every thread is stitched and bound together in infinite patterns and colours
I have sat here all day, trying to digest and compose the thoughts my heart has been pondering. I listen to the radio and mentally file the public service announcements and decide that I will not worry about them until later. I listen to a piece of music I used to be able to play on the piano before … well, before what? There are answers to that, but I just keep making stitches and counting in the round, one stitch at a time to get through the day. It is the only way I can do it. If I ruminate on my losses, they overwhelm me. If I create something new, I might be able to accept that I am worthwhile and allowed to inhabit this little planet. Especially if I can give that something new to someone else.
One friend writes to ask if I am ok. Another writes to say they are not. One Tweet says that someone is struggling. One facebook status says that an acquaintance has died. She had MS and was part of an online community I was a part of and I met her briefly about 5 or so years ago. She had a chest infection and MS had rendered her body too weak to fight it. I decide to mentally file it and after a few tears, both for her loss and my own fear, the decision not to think or ruminate takes over once again. I think about them all, but I never used to be quite like this. I used to face things. But now I have learned how to cope by:
One text asks for me to ‘call a work type person’ for a chat. Another ‘work type person’ calls to ask me to be involved in an ‘access group’. I begin to wonder which threads of my life now need to be cut now that my mobility is severely cut and my health falters and changes from day to day. Sadly threads have been cut that I would not have chosen. And now I have to work the frayed ends of changing friendships and dimmed hopes and lost opportunities into a new garment for my life. One I had never thought that I would wear.
I can barely remember things like remembering to renew my daughter’s passport or to pursue a reassessment of my disability benefits so that I am able and allowed to continue doing “permitted work” let alone to take medication at 4:00, a most inconvenient time in the afternoon.
I plunge my hands into bags of textiles, soft colours and textures to escape from the nagging suspicion that there are things I “should” be doing, that there might be someone that I have let down. I try to stop thinking about the fact that I am unable to leave the house on my own, or pick Flower up from school for lack of ramps and dropped curbs.
I have begun to hate asking for help. Just because I have to do it so often. Everytime I feel like I’ve made progress towards my own independence, I feel like I must humble myself yet again. One step forward, two steps back. I mostly answer the “what have you done to your leg, dear?” questions with love and grace, but I am beginning to find the camaraderie of disabled strangers in the centre of town more uplifting than the honest concern of those I have known for years.
join colour into chain 1 space, chain 3, 2 double crochet, chain 1, 3 double crochet, chain 2, 3 double crochet. . . and so on. . .
swing low sweet chariot, commin' for to carry me home
After 15 years with this dreaded, progressive, neurological condition, I have in the space of about 2 or 3 weeks gone from a walker who occasionally uses a wheelchair a little to a wheelchair user who occasionally walks a little.
It’s been a fast and fierce change to my life on many levels.
One one level, I’ve been kind of in the process of getting used to the idea of using a wheelchair to get around for 15 years, so it’s not an entirely new idea. On another level, it’s a bit of a pain Practically and literally, even. Drop curbs aren’t always forthcoming and my legs have been really quite sore most of the time.
On the one hand I see the transition as a positive one that will allow me to function and move more easily than my body will facilitate alone. On the other hand, I was not expecting the ongoing grief that began to envelop me over the last weekend.
I tried to get across the street by walking (SLOWLY with a stick) to the duck pond at lunchtime yesterday. The effort finished me for the rest of the day. I couldn’t even face the online grocery shop. There’s that squeezing feeling around the centre of my chest I so often get when someone dies, though nothing so tragic has actually happened.
When I am met with people who shake their heads, not knowing how to respond, saying “I’m so sorry”, on the one hand I want to say “Well, what did you think was going to happen to me? Did you think I was kidding about this whole MS thing because you didn’t used to be able to SEE it?”, on the other hand, I accept their sympathy gratefully and value their appreciation of the weight of the matter.
I guess, after juggling and wrestling with disability and equality for 15 years of working and living in and with the issues and problems and positives and disability on all kinds of levels, I just need to hold my head up high, hop on my chariot and put my ethics where my wheels are and ride off into the sunset.
I may be trying to be super, mega, uber strength woman. . .
Had a rejection letter for one application that I put in recently (no reply from the other). And in light of the fact that I am generally struggling to stay positive lately, for various heavy life reasons, I thought I would try this affirmation thing that the self help gurus rave so much about.
affirmations for today:
I can do this.
I am liked.
I am intelligent.
I am creative.
I am able to see a world in a grain of sand.
I am secure.
I have plenty.
I care.
(ok, running out of ideas. Am I suppose to be super confident and happy now? [waits] . . .)
Sitting and waiting for a delivery, day 2 of Flower being back to school, wasting time, feeling guilty, looking out the window craning my neck to see the front door every ten minutes to make sure I have not missed the knock. Empty house, except me and the cat sleeping in a box that is at least a size too small for her, fur poofed out over the edge, paw hanging over the side, propped as a pillow, snoring contentedly.
Thinking about wheelchairs and school/work uniforms and morals and friendship and weight control and spirituality and the differences between mexican and spanish culture/pronounciation and where we all come from and why we’re all here and where we’re all going to and how to best live until breakfast and form filling and whether Azathioprine may improve or ruin my life.
Scattered web browsing to match my scattered thoughts, a thousand things to do, a thousand words to write, and a thousand thoughts to think, dreams to dream, but as I can’t possibly decide where to start, can’t possibly decide what to do, how to sort myself from a thousand tangled and sticky, webbed and knotted threads into a neat and orderly accountant’s spreadsheet, i may just immerse myself into the burgeoning mass of yarn and crochet hooks that is covering the sofa and sink luxuriously into a Mind that is only counting stitches, not burdens, and consequences.
The delivery is finally here now, and gone. I’ll go shopping.
Day 2 off of the steroids, and my body’s fighting back. It doesn’t seem to like feeling well.
GAH! bad time for an application deadline. Feel faint. Can’t think. Hard to try to convince someone that they want to employ you when all you want to do is crawl back under the bed covers yourself.
I was only half listening, so I couldn’t tell you what they said about it, but I didn’t give what they were saying much credence. Why should I, after all I have seen and learnt? For what I have learnt is that the word doesn’t mean much to most. Most of the world doesn’t seem to know what it is to trust let alone know what it means to be trusted. Most of the world can not value what they do not know about.
Which I have learnt. Only too harshly.
Because in my naivety, I have gone through my life mostly in a state of trust. And up until recently, I have been truly blessed by those who have offered me their trust worthiness.
And so I also learnt to give. To give of myself. Practically, emotionally, spiritually, intellectually. . . I have grown up mostly fearless of being my authentic self to all. How could I be anything else? I did not know it could be used against me. I did not know what it was not to trust.
When I was a very young emerging woman seeking enlightenment, about the world, about life, about other people, about God, I remember being aware that others seemed to close down. Others, it appeared to me, didn’t want to talk to me, be honest with me, didn’t want to trust me, or anyone, anymore. And I made my innocent, possibly flagrantly naive, decision that I would not be like that. I was unwilling to pretend, to lie, to hide my honesty. From anyone.
And now it has been too many years of living this path of brutal honesty and authenticity for me to know how to live any way else, even for the sake of my own protection. That very young emerging woman decided that she would not shy away from the risks involved in living authentically, honestly, openly, with a hand reaching out to the closed vessels around her.
So that now, even though experience may inform wisdom to act differently. . . she can not.
And you get everywhere. It’s not even like you’re polite about it. Not a single “I’m sorry” or “excuse me, I didn’t mean to step on your heart”. No, you just go wherever you want to, and it’s almost like you put on your steel capped boots and stamp hardest wherever you damn well please, on *purpose*.
I mean, my memory is generally getting worse as I get older, but the long term is painfully still intact. And what does it take for something to move from short term memory to long term? Only to mean enough.
And you know you meant enough, you ghosts. I think you’re enjoying this. This game. This watching of your adversary suffer under memories. Memories and losses. Game over, you win. I may have had half a fighting chance, had I known that I was actually playing a game with you. All of you. But I was too naive to realise that. Too naive and too late. My fault. My loss. Never again.
Or so I say, now.
So how do I come out of this on top again. Can a person pray like this? Can God hear me through such bitterness? Or does such a prayer fall to my feet, like the black leaden emotions it contains, rather than to float skyward towards the heavens and a purer intention?
Ghosts wear such leaden shoes. That’s why they’re so hard to get rid of once they plant their feet in the tent of your soul.
That’s why I have always preferred to run barefoot.
Nine days before his death Immanuel Kant was visited by his physician. Old, ill and nearly blind, he rose from his chair and stood trembling with weakness and muttering unintelligible words. Finally his faithful companion realized that he would not sit down again until the visitor had taken a seat. This he did, and Kant then permitted himself to be helped to his chair and, after having regained some of his strength , said, “Das Gefühl für Humanität hat mich noch micht verlassen.” – “The sense of humanity has not yet left me.” The two men were moved almost to tears. For, though the word Humanität had come, in the eighteenth century almost to mean little more than politeness and civility, it had, for Kant, a much deeper significance, which the circumstances of the moment served to emphasize: man’s proud and tragic consciousness of self-approved and self-imposed principles, contrasting with his utter subjection to illness, decay and all that is implied to the word ‘mortality.’
– Erwin Panofsky from The History of Art as a Humanistic Dicipline1940
Taste of chocolate trickles down my throat
Slowly coating my tongue like bitter words remembered,
Chiselling away at the sweetness I knew before.
But all I see is changeable,
Like the chair that didn’t hold.
Changeable,
Like the sun that gave no warmth.
Unlike this room,
This constant table
Holding my hopes on display
In a notebook,
On a platform,
In a handful of words that didn’t make any difference at all.
Spoken, not tasted.
Spoken and dissolved.
I dust these words off once a week
And offer them up,
As a sacrifice,
Offer them up,
To you for rejection.
More ghost than substance,
More rainbow than pot of gold.
Like the sacrifice I offered to those
Who didn’t understand.
I think Ive recently had a “do over”. you know, when you start over because something has gone horribly wrong. But I don’t know. I certainly didn’t call it, or at least I don’t think I did. I just don’t recognise the rules, the settings or the players anymore. I didn’t understand them before, but at least I recognised them. I feel like I’ve very quickly gone from being a team player to going it all solo. Which could be either my finest hour. . .
Charlatans don’t really seem to have changed their methods much in the last 150 years of preying on the vulnerable for either money or for the satisfaction of the feeling of power.
The first English language newspaper that was published in my Chosenland ran from 1804 – 1930. On the 6th of December, 1850, the following advertisement appeared:
My Fellow-Sufferers – I sympathise with you under your Nervous or Mental Affliction. But having discovered the means of cure myself of a deep-rooted Nervous Complaint of fourteen years’ duration, I take this method of informing you that I am both able and willing to cure your Nervous Suffering; – especially
Depression of Spirits. – This is one of the most distressing symptoms. It prevents riches, learning, society, &c. [from] making man or woman cheerful. It is the chief cause of suicides.
Involuntary Blushing – This keeps the Nervous out of Society or renders them uncomfortable in it.
Sleeplessness. – This treatment never fails to restore sound sleep.
Restlessness. – This prevents the sufferer from settling to anything, or finding contentment or satisfaction anywhere.
A dislike of Society; Unfitness for Business or Study; Failure of the Memory; Confusion of Thought; Giddiness; Delusions; Blood to the Head; Groundless Fears; Indecision; Hysterics; Wretchedness; Blasphemous Thoughts; Thoughts of Self Destruction; Fear of Insanity, &c. &c.
For those and other Nervous or Mental Sufferings and Insanity, no other CURE is known. I challenge the Nation to produce any other. And I offer a REWARD of ONE HUNDRED POUNDS to remove these Mental or Nervous Afflictions by any other means. And another HUNDRED POUNDS to cure as many of Insanity in the same time as I have. These Cures have not been effected by Pills, Powders, Draughts, Bleeding &c., nor can any such means cure diseases of the mind. No, my great Doscoveries consist in means that act on the nerves, and enable me to restore the brain to perfect health, which is the organ on which the correct working of the thoughts and feelings depend. Having for thirty years been successful in the cure of these Complaints, it is no matter of surprise that thousands have applied to me from all parts. . . Indeed, the time has arrived when the feeling is general that no other means of care are known; and that all who cannot avail themselves of the EXTRA MEANS at my house, or the ordinary means at their own, may give up all hope of a cure. I therefore advise Nervous Sufferers and Friends of the Insane, to come or write. Thirty years’ successful practice, leaves no doubt but they can but be cured unless malformation prevents, and this is a rare case. Let none therefore be discouraged by the idea of expense, as benevolence rather than gain is my motto.
I also find it quite astonishing that the description of “Nervous or Mental Sufferings and Insanity” can have changed so little in the last 150 years or so. I know that I, for one, can relate to these descriptions of the constituent elements of “Nervous or Mental Sufferings and Insanity” (well, apart from the Blushing bit) all too well. Perhaps I should look for a descendent of “Mr. W.M. Willis Moseley, A.M.L.L.D. &c.” to see if they still have his oh so secret recipe and appeal to their “benevolence” in the hopes of “Curing” myself of my own “Nervous or Mental Sufferings and Insanity”, which seem to be so overwhelmingly present at this current time, since to be perfectly honest, my personal experience of the modern Pharmaceutical industry has not been much better than I would imagine Mr. W.M. Willis Moseley, A.M.L.L.D. &c. ‘s clients had of him!
For about a year I used to live in what could be termed a ‘suburb’ of a big famous city. This city had a big famous art museum. The art museum had a big famous fountain.
The year I lived there was not a happy one. But I would take refuge in front of my favourite painting (incidentally, it too was big and famous) and sit there looking for ages and ages, taking in each individual brush stroke, each flash of colour, each texture of paint, standing near and then far, thinking about the man who had created such joy out of his own sadness.
Then there was the fountain.
The first time I experienced severe mental breakdown (not the first time depression had entered my life, but the fist time sanity left it) I ran to that fountain. I sat and stared at the water almost willing it to heal me. I had been baptised earlier that year and found healing then. It was as if I thought that water could do it again.
Alas, Time and Distance were the only things that were able to do that.
Still, all of these years later, water continues to draw me, to soothe me. I realise on mornings when I find myself sitting on the shower floor allowing the water to simply wash over me and when I shake my head and come to and realise that I have no idea how long I have been sitting there, that most likely, my mood has dropped again, and I’d better start to take care.
I found myself in this very position yesterday morning, sat on the shower floor my arms linked around my knees, not sure what to do next. I just knew I didn’t want to stand up.
But eventually, water will make one’s skin appear a bit more like that of a raisin, and some kind of call of responsibility of some sort will chime through my brain and move me on. I find it very difficult to completely forget my responsibilities. Perhaps this is the very fact that so often pushes my mood over that precipice and sees it plummet down low, the remembererance and weight of responsibility.
But perhaps I need to think back to a younger me who ran to the soothing healing I used to find in water, in art, in the hallowed private spaces that I would consecrate for myself. Perhaps I need to think back to that younger me and the things that used to bring me joy. I have forgotten so much of what once seemed so important.
Important and joyous. Joy in the midst of trial. It did exist. It always did. Once.
The Flower Child quickly flipped through the pages of her Life Story book and gave brief descriptions, as we have taught them to her, of the various photos and clip art that her former Social Worker had thrown together three years ago from whatever information and relics from Flower’s past that they had. (and we are eternally grateful that they had so many)
“That was ME when I was a baby! That was ME when I was in a buggy! That was ME swimming! That was the judge! He said I could live with Mummy and Daddy forever! Mummy and Daddy and Flower. Forever. And I was in HER tummy! [pointing to a photo of her Birth Mother with excitement]”
Yes, yes Flower, you were in “HER tummy” not mine. It had never made me stop and pause over the fact before. It just was. I wonder why it should today. I always wanted to adopt. I always wanted to make my family this way, even when I was little myself.
I certainly never wanted to suffer through the physical demands of pregnancy, not after all of the other painful things that my body has made me go through. A friend wonderfully told me once in her first pregnancy that she had “complete confidence in [her] body to do this”, but I never had that same confidence in my own. For that matter, I usually don’t have the basic confidence in my body to do the mundane tasks I ask of it every day. Whether I was right or I was wrong, even if I could have succeeded through pregnancy, I wanted to adopt.
So what a surprise I had, that my heart should take a tiny little leap, just a tiny, little one, but still perceptible, when my darling little girl, who is as much a part of me now as if my body had carried her inside, has come to understand and accept (as we have always wanted her to) that she was in another woman’s tummy once.
And it kind of makes me smile and half chuckle to myself to claim the experience of that emotion. I don’t know if I could explain it any better. But it makes me happy, both for her, and for me.
I have been known to leave my house keys under the door matt so that you could let yourself in and make yourself comfortable.
I have been known to trust too readily, give away too much too easily, offer my shelter to those who might not return the favour.
I have been known to leave myself exposed, to put myself at risk in the hope of gaining more than I might lose. In the hope that by not holding on too tightly to my treasures that they will be multiplied.
And they have been, I’ve gained so much. I stood teetering on the cliff edges and gained the wind, I jumped off and gained flight. I have opened the doors to my heart and watched the people crowd themselves inside and bring me warmth.
But I have hurt too. I have felt the cold, I have hurt and lost and cried and fallen over the edge and watched the treasures within my house fall prey to thieves in the night.
And then returned to place my key under the matt.
And those are the times that I have to ask why. Why should I risk so much when I lose so much? Why should I welcome in the ache along with the joy, the danger instead of the safety? It is too easy at those times to forget the feeling of flying, to forget all that I still have. But still. . . is it worth the risk?
This morning I went back to what is perhaps my favourite place in the world. At least it is when I am standing on the cliff edge and feeling the wind at my back, watching the birds play in the sky and hearing the waves rolling in beneath me. I went there to find a peaceful place, and I did, in the sunshine.
I also went there to play with my new DSLR, a Pentax K-5, which incidentally has movie capability.
Now, I’ve never been a movie maker. I haven’t tried makking a movie since 1995, and then it was with a clunky, old style, VHS camcorder and edited on 2 track equipment in a studio. It was kind of bad. But it was kind of fun. So today I wanted to experiment. So, that’s all the following video is, an experiment.
But also, it’s a way to share my morning and this wonderful place with you. As I stood on the cliff top I looked down to adjust my tripod for a minute at most, and when I looked up again, the features, the sea and the beach were gone in a shroud of mist which blew in very suddenly. The sun still shone on the fields behind me, but out on the cliff edge it had become eerily dark. Knowing that the weather here is completely unpredictable, I quickly turned to head back to the bus stop.
There are conversations that, as parents, we must all have someday with our children.
These are necessary. And we dread them. They are the conversations that move our children further along the road of development and maturity. Conversations about death, about sex about right and wrong. And we dread them for many reasons. We dread them because we want to make sure that we get it right. We dread them because we want to give them the emotional resources to deal with heavy things. We dread them because often our parents met these conversations with dread that was obvious to us as children. And now we see them as scary things.
Personally I dread them, because they will begin to remove my child’s innocence.
At the moment, my daughter has no concept of death. She is blissfully unaware of the fact that everything will someday cease to be. My daughter loves life, she loves other people, she loves everything in this world in an innocent blaze of happiness that is almost unheard of in a child of 4 and 1/2 years. Yes, she has known loss, but she can not remember it. I dread bringing loss back into her life. I want her to be happy forever.
Forever.
When she was very little, in the toddler years, sometimes when she did something that she needed to learn that she should not do, and we were experimenting in which parenting techniques worked for us and which ones did not, we would say that if she “did that again” she would lose a privilege or a favourite toy for a day or two. Sometimes the punishment worked, and sometimes it didn’t. But I now wish we hadn’t used her toys to try and teach her. The memory of her realisation of the loss of something she had felt secure of, even for that brief time, is impressed on me. At least she always got them back. Someday she will not get something back. And mummy will be there for her. Just as mummy looks for others to be there for herself when she loses something/one.
But now, our old and much beloved cat is dying. He has reached the end of his days, but the sad and cruel thing that must happen with a pet is that we need to make the decision that his quality of life is so low that it will be kinder to end his life. We need to actually do the ending. And we don’t want to.
We haven’t done it yet. We want to prepare our Flower Child. We want to let her say good bye. We want to say good bye to our companion for the last 11 years. How do you prepare a child who has no concept of death for a death that you are planning to happen, when of course your own sadness is involved in the story too?
I have been talking with Flower quite a bit recently about emotions, identifying them in other people, talking about our own, about feelings being ok, no matter what they are.
But in terms of learning how to handle emotions. . . that’s a bit harder. I’ve had to be careful around being clear that “honey, it is ok to cry when we are sad, or when someone has hurt us or when we are sick or in pain. . . but it’s not ok to cry because mummy has given you chicken for dinner. That’s just not that big of a deal.” And then the parental worry that, actually she will learn that “it’s not ok to cry” which is not what I want her to hear? I want her to hear that we can be strong when little things happen that we don’t like (like chicken for dinner) but it’s ok to not be strong sometimes too.
Phew. It all feels so big.
So somehow I need to open up the discussion about “you know Heathcliff has been very sick, and we have had to take him to the vet quite a few times. Well someday, he isn’t going to come home again. No, never. And that’s because. . . ”
What next?? She just doesn’t know about it yet. I just never want her to have to know. I just want her to be innocent of death and loss forever. But that can’t be.
Sending her to school was not difficult for me, as it is for some parents who experience it as their baby growing up. As I never had a baby, I didn’t really have that marker. Telling her about death, however, is going to break my heart.
She will never be a little girl, at least in quite the same way, again.
Last week I gathered together my scattered strands of Hope, stuffed her into my bag along with my Kindle, my keys and my glasses, and headed to the hospital. That day, I would see my opthamologist and he would look into my eyes, right back to my optic nerve, and tell me what damage had been done, what was still ok and what could be done to improve or better live with my reduced sight.
Those strands of Hope were restless and squirming around as I clutched the bag closed, hoping to contain them as I waited. There must be something I didn’t know and I just knew that if anyone did know, this man must. Could things get better for this inwardly ambitious, but physically fatigued photographer who was just beginning to feel her feet standing firm in the field she had always always dreamed of?
I knew I would wait a very long time for this appointment, because I was requesting to see the consultant rather than a registrar or junior doctor because today I wanted to be sure that what I was told was the answer, if indeed there was one. I didn’t want to let go of the hope that there was one.
My wait was indeed long, over two hours in the waiting room, but eventually I was told “you are next.” I watched an elderly woman with a cane and thick glasses go in to the consulting room with her friend and waiting for them to come out again felt like an age. For they stood between me and my answer. Hope started jumping around like an unruly child.
Finally my time came. My distance vision tested worse than last year, but that was never the problem, and could be easily sorted with glasses anyway. That was not why I was here. My answer came quickly as my colour perception tested obviously worse than last time and by my own admission my depth perception was mostly gone and I needed to rely on those stripes they paint on steps to aid people who are visually impaired. Pressure around my eyes and headaches always came when there were too many objects/people/things to look at in a place.
“Well, loss of colour and depth perception are obvious signs of optic neuritis, but then you most likely already knew that.”
But. . . yes. . . but . . . I never had optic neuritis. I mean I did once, for a couple weeks or a month, but it went away and. . . but, I didn’t think I had that, they always said my optic nerve looked fine but. . . now it’s pale. . . I . . .is there anything I can do to make it better?
shrug, “No. Just common sense, which you are already using.”
Why was I finding this so hard to hear? Optic Neuritis, two words that have been in my consciousness for so many years, two words that are so synonymous with Multiple Sclerosis that when you say “I have MS” it is almost excepted that you continue with “and optic neuritis was my first symptom”. Why did I feel surprised? I must have thought that because it wasn’t the first symptom for me, that I must have escaped it. Why should I have escaped? What made me think that I was ‘different’? Why was I finding this hard? I have accepted MS, why not ON? Why was ON feeling more difficult than the tingling I get in my right foot or the drag that sometimes happens to my left leg or the crippling fatigue and depression that some days won’t allow me to leave the house?
I have never been afraid of a wheelchair. I have always dealt with nerve pain and electric shock sensations with an “oh well” and a grumble. But my eyes. My sight. My precious sight. My world has always been so colourful, so vivid, so full of things to see to discover, my wonder is in the scene that displays itself before me. I had hoped that the colours would come back, but now I know they will only continue to degenerate. I had hoped that it was all just temporary as the stats seem to say, that I just had to know the right things to do to make it better. But not everyone fits the stats. And whatever my problems were, they weren’t going away.
I got home from my appointment. My bag fell open on the floor and Hope ran out, unconstrained, like the unruly child she is.
What’s wrong with me? Optic Neuritis. I had already known the answer. I didn’t need the consultant opthamologist to tell me. I just needed him to make me begin to realise and accept the truth that I already knew.
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.
Why recently have I delved back into my blog archives and brought things back out to parade in front of your eyes instead of delving into the recesses of my soul to find something new for you?
Because if this blog, as a means of communication, as a mirror reflecting my own life and heart as in life, if it can be truly said that everything is cyclical, then all that has been true, remains. The thoughts, intuitions and feelings that I have chewed over and tasted in days past, turn themselves over and over again, burying their heads under the surface only so long, before they bubble up to the fore again.
So perhaps, if my art, my writing, my heart, my self, reflect my life, as it must, then to turn over these thoughts again, like a pebble washed by the surf, is only natural. Perhaps to remain authentic to you, dear reader, I must remind myself of who I have been before I can understand who I am now, who I am becoming. Because, of course, they are one and the same. To wipe away the past and ‘replace’ it with something totally ‘new’, is only ever a delusion.
Everything that is, is in me now, only because it has always been. And here I turn my heart to seasons past to understand where I am going and how to come through.
Song of a Man Who Has Come Through
by D.H. Lawrence
Not I, not I, but the wind that blows through me!
A fine wind is blowing the new direction of Time.
If only I let it bear me, carry me, if only it carry me!
If only I am sensitive, subtle, oh, delicate, a winged gift!
If only, most lovely of all, I yield myself and am borrowed
By the fine, fine, wind that takes its course through the chaos of the world
Like a fine, an exquisite chisel, a wedge-blade inserted;
If only I am keen and hard like the sheer tip of a wedge
Driven by invisible blows,
The rock will split, we shall come at the wonder, we shall find the Hesperides.
Oh, for the wonder that bubbles into my soul,
I would be a good fountain, a good well-head,
Would blur no whisper, spoil no expression.
What is the knocking?
What is the knocking at the door in the night?
It is somebody wants to do us harm.
No, no, it is the three strange angels.
Let them come in
And:
Originally posted by the last burntsienna crayon on June 10, 2009
assassinations or assessments of character?
I had a long conversation with a friend once.
I was about 18 and as we were both from one of those ‘small towns where nothing ever happens but everybody listens’, for some reason, we often found that sitting in the middle of my street (i mean actually on the street) was as good a place as any to have a long conversation at 3 am. I don’t know why, but then I don’t know why we did half the things that we did when I was 18. There really wasn’t anyplace else to go.
He was the kind of friend who didn’t pull any punches. And neither did I. (I probably still don’t, for that matter) After several hours of him telling me (in the kindest possible of ways) exactly what he thought of me and what my place in the world should be I said “D, is there anything good about me?” (remember, this was a friend. just an honest friend. And I actually liked that about him. You never had to wonder where you stood.)
He thought for about half a minute and replied, “You care. . . You care about things, but you care too much.” And I couldn’t begin to even comprehend what he could possibly mean by that. How could it even be possible to care too much? Is there a “too much”? It bemused, perplexed and stayed with me for 15 years.
However recently, I began to understand, and I now accept his assessment of the character of my former self. Because I am completely aware that it could also describe my current self. I don’t think I’ve really changed that much.
I had a conversation with my husband not long ago. And somewhere in that conversation I remember him concluding that “Unfortunately, you’re a bad kind of combination. You’re a nonconformist who is sensitive to rejection.”
I understood and accepted that assessment of my character from the start. Some things can’t be denied when they’re as plain as the nose on your face. And again I think it all comes down to caring too much. And it has caused me a lot of grief over the years. If I could manage to be a ‘nonconformist who didn’t care’ then I could just get on with doing and saying things that confuse people in a parameter outside of the norms, and being different wouldn’t cause me any bother and I would be perfectly happy.
But I can’t. And I’m still not sure that I’d really want to. I don’t think I’d really want to stop caring. I’ve tried, completely unsuccessfully. Perhaps there’s just a way of doing it better? I don’t know.
When shadows pull the answers up
From frosted soil distractions
Dry leaf lined beds of winter anger
Crackle underfoot,
Then there is nothing to be done.
The answers turn to stone.
And so do I.
When answers rise from pavements
And eyes look down to reason
With sandstone and asphalt,
Pebbledash my brightness
Chisel down my wholeness
Turn back to soil pavings
Unfinish the foundations
Rising from below.
nb: just to note that the way I usually write poetry (not always, mind) is a combination of sounds and images put together to convey feelings, rather than words and symbols put together to convey explicit meanings. The images, the sounds and the feelings are the point, not the “now what does that mean?” of it all. What do the words, the images intuitively make you feel? Don’t get too hung up on meanings.
A man sat and swayed giddily with his head in his hands, alone at the McDonald’s table, three bags of Things around him. No coffee. No Bagel. No Morning After Lover. Nothing.
The regret for last night’s whisky dripped from the furrow in his forehead. I felt there should have at least been a cup of black coffee in front of him. As it was, it was only a tatty old duffel and a paper bag from Primark.
I have imagined his story. Who he was. A despondent and broken man. He was leaving home. No! He was not allowed to go home. He was hungover. He no longer had a home
Or was his story less traumatic than that? Was he just some jerk who had partied too hard the night before? No, the way he looked, the way he presented himself to the world, could only be justified by some trauma. I wondered if I should feel for his broken heart, or if I should be angry for the heinous crimes he had committed, the hurt he had caused, or if I should reach out and show him compassion, or if I would just be refused and growled away with spits of anger and resentment. The blame for all this pain, the broken dreams, to end up here, in McDonald’s, alone.
Just go away.
Leave me alone, to sway to and fro in my drunken misery. Do not touch me. Do not soothe me. I do not want your kindness. I do not know how. Don’t make me learn.
Why are people so often scared of other people? Why is approaching and being approached neither something we do, nor something we want done to us? What are we afraid of? We are, none of us, alone. . . yet all of us are alone. Alone as a man with a duffel bag seeking the warmth of McDonald’s on a cold January day.
We look at people, other people all the time, we even stop and stare. But we never connect. We build walls. “Good fences make good neighbours.” We never try to join our situations, our hearts, our compassion with other living creatures.
Or do we?
Perhaps that is why we all sit despondent at empty tables. Perhaps we try and perhaps we have only found rejection. Perhaps the tearing apart from our fellow mankind is what hurts so much, when our longing is to be whole, completed, connected. So we spit it away if offered to us, before we can taste rejection again. We hurt before we can be hurt.
Is it not to be expected?
How are we to break through these walls? How are we to bring down the barriers the barred windows, looking out on the others from our safe, locked cells.
Perhaps the most despondent of all are the only ones who have tried.
I say “used to know me” rather than “who know me” because in fact that may be closer to the truth than I would like it to be. It must be difficult for those around a person, who have learned about a person, who have developed a particular way of being with a person, being friends with a person. . . to suddenly be asked to adjust and change to act/be/behave in ways as yet unknown to the relationship.
I know it is difficult to be the person herself, the person inside, who knows what is happening, who knows what is being asked of her, and I imagine it must be that much more difficult to be the person on the outside, who does not know what is happening nor what is being asked of them.
So I thought I’d just try to let you in. Bring you from the outside to the inside. Let you know what is being asked of you by letting you know what is being asked of me. Let you know what is happening. It’s the least I can do.
I’ve only begun to understand it myself.
I was speaking to my friend’s father in my busy church hall several months ago after not having seen him in awhile and he leaned closer to hear me and said “Say that again. I can hear everything and nothing.”
And I completely understood. Everything and nothing. Yes, that’s what I can and can not see.
My eyesight has been giving me problems for many years, but usually intermittently. Usually I would just sit back and wait and everything would clear up. I have had bouts of Optic Neuritis, Nystagmus, Oscillopsia, and Diplopia (if labels make anything easier to understand), and in the last 3-5 years things have been a bit more unstable than they could have been, but it has really only been since the relapse my MS had in July that I have had to admit that, hey, we have a serious problem here. It has been what I would call a significant disability. I’ve had meds that have somewhat improved things, but essentially, this time, it ain’t going away!
But most people around me don’t know that. Firstly, because it is not how they have met and known me it has been such a gradual decline (even those who have been close can not be expected to fully know), secondly, because it has not been so sudden as to announce and explain itself. There has been nothing (if I had become completely blind in a car accident or something, it might not be so unexplainable) and also because, well, the doctors don’t understand it themselves.
So here, I will write “The Idiot’s Guide to Burntsienna’s Eyesight (and other MS mysteries)” (or at least I will try. This is a combination of neuroscience and social etiquette/survival. . . it’s not easy for anyone ).
MS causes gradual (in varying degrees) deterioration in the nerves in the body, the white matter of the brain and the spinal cord. Almost anything can happen.
Glasses can not help this. I am only very slightly short sighted and only have a very slight prescription pair of glasses. These can only help in that when focal length is corrected, it puts less strain on brain/nerves to do what they need to.
I can see everything and nothing. Everything in my attempted field of vision will appear on my Retina. There are no lesions on my optic nerve (the doctors promise, they’ve seen it).The problem happens either somewhere in my brain or on the way from my eyes to my brain.
This must mean that my visual problems are somehow cognitive. It is most probably a problem in understanding what I see rather than the actual seeing. This does NOT mean that I am imagining a problem or that I could see properly if I just tried harder!
Nothing is constant. There are a million variables affecting the severity of my vision/cognition at any given time (e.g. movement, medication, viruses, infections, diet, colours, number of objects looked at, what I did in the last 5 minutes, the height of the ceiling in the room [no, seriously], etc…).
Assume the worst but know that it just may happen to be better than that at the time you encounter me.
I am not good at recognising people. Even people I have known well for years. I am very good at working out who my friends are from their voices. Speak to me if you see me and recognise me walking toward you. You don’t have to say much and I won’t grab you for a long chat if we’re just passing. But something longer than “Hi,” is preferable. Some people (esp tall people) I am quite good at recognising due to body shape. Hair style/colour works too.
Children are particularly hard for me to recognise because they move fast and movement confuses the nerves/axons/brain cells/vision/whatever. If I don’t acknowledge your kids, don’t take offence. If they take offence, maybe just explain to them that “Auntie Sienna probably just didn’t see you. She didn’t mean to walk right by you and not say hello.”
If I ask where something is, don’t answer with something vague like “over there”. Specifics are crucial. “over there to the left of the red car parked by that pine tree” is brilliant! Colours are really really helpful. I can still see/understand them, so they help bring a scene into my understanding. Pointing helps and is good, but only when accompanied by words to describe.
If I ask you a question like “what time is it?” and it’s no skin off your nose to actually say the words “8.30,” then say them. Don’t point at the clock or show me your watch.
If you do show me something (or even if I ask to see something) and I don’t respond or I act blank or confused or silent, please don’t, even jokingly, mock me for being vague/dazed/confused/stupid/thick/etc. You have to be really very close to me before it’s ok to say “Oi, right in front of you, stupid!” Yes, there are one or two who could do that and get a shared chuckle out of me. . . but it’s probably not you. So don’t.
This is a bummer of a problem for someone who has chosen to pursue photography as her chosen future career path. I don’t think it means that I will be unable to do it. But it will take me longer to do everything.
Sometimes I don’t feel safe. I probably and usually am safe at those times, but sometimes I don’t feel it. So I may like you to just tag along with me sometimes.
I am good at asking for help when I need it. If I say I don’t need it, I’m not being over confident, so please don’t over fuss or predict my doom before I’ve tried something. I like trying things. It’s just that sometimes I may feel that I can’t. Be as flexible as I need to be and allow me to say either yes or no, regardless of whether it was the thing I said the last time I was in the same situation or not.
And finally, I’m just a little bit scared. And very frustrated. But I’ll cope. I always do.
So here i sit on a cliff edge overlooking a sea of something new. A new year, a new sea. The waves, the tide, what was here before, they have all moved places.
Once upon a time I was frightened by the cliff edge and of a decision that I was standing on at the time, but I made the decision to simply jump off and see if I could fly. I took off and soared for a few months, at least, which was better than immediately crashing to the foot the rocks below. It probably made my eventual landing a bit softer in the end.
And I think it helped mould the way I have approached my life ever since.
This method of decision making may have become somewhat of a habit over the past 17 years or so of my life. I have become more determined to actually make the decisions set before me than perhaps I have been to weigh up all of the consequences and take my time.
Which, in many ways, this has been a better way for me than would have been simply sitting on the rocks below and waiting for the tide to rise and cover me while I sat incapacitated with indecision.
New Year has always been a more hopeful time for me than the pressure and grief of Christmas. (pressure by the whole world to “Be happy!! It’s Christmas!!” grief for the loss of the friends and family I used to have around me at this time.)
I am one who likes to get things done. To just jump off the cliff and be done with it and deal with the consequences after. I don’t enjoy the sludgy, slushy bog of limbo and liminality.
Liminality is defined by Google as: “(from the Latin word līmen, meaning “a threshold”) The liminal state is characterized by ambiguity, openness, and indeterminacy. One’s sense of identity dissolves to some extent, bringing about disorientation.”
It is a concept that I am still trying to grasp, and one that I am grateful to my dear friend World Without End for introducing me to.
I would link the amazing post he wrote once about it, but his posts have a frustrating habit of disappearing.
Because it reminds me that I am travelling. It reminds me that I am on a journey and that, yes, I will be between the start and the finish so many times in my life. I don’t like the feeling. I don’t like the uncertainties the unknowns.
But anything can happen and it is up to me, me and no one else, to determine that I reach journey’s end. I can sit on the rugged and weather beaten bench of limbo and liminality on the cliff edge looking out to sea in a lovely daydream, sinking into the soft boggy ground, out to the horrizen in the far distance, isn’t it pretty?
. . . OR I can stand up, put on my my parachute and jump, jump, jump, trying my hardest to hit the water and start swimming like mad rather than making no effort at all (oh doesn’t it feel nice to just sit a while?) and allowing the wind to blow me hard against the rocks.
A vague acquaintance said to me once, “stagnation is death”. Yes, it was a bit pretentious of the guy at the time (and I think he might have been trying to chat me up!), but when it comes down to it, i have always agreed with him.
The letters that I never sent to you
were much more interesting
than the ones that I did.
More raw,
more real,
more honest,
They told you things.
Then got consigned to the recesses
of a place so deep inside me
that there would never be any fear of
recall,
judgement,
rejection, of
misunderstanding.
So now, I write more simply,
I write fewer words with
lesser meanings, no need this time
for recall,
nor for fear of raw communication,
connection.
I write.
I send.
I am misunderstood,
judged,
rejected.
Perhaps I put the wrong letter
into the envelope.
It was seven years ago, that in
Looking for that lighthouse near the cafe called The Rock,
In Devon or Cornwall (I always forget
Which it was) I slipped into a silence.
It didn’t just happen, but slowly rose
To my side and took my hand.
Stunned, I didn’t hear when asked to hand
The waitress the leftover cup which, like me, now had nothing in.
And clumsy, not thinking, knocked over the vase of roses,
Felt my heart sink like a rock,
Or like the sound of angry cursing in a room of proper silence.
Those feelings one tries to forget.
And I did forget,
Seven years ago, looking away from the task at hand
I once more took my old friend, Silence,
With me to the water’s edge, hoping that the tide was in,
And at the shore picked up a small rock
To skip across the first wave that rose.
It was then that a new (or was it old?) feeling arose,
Though no sooner than felt I began to forget,
And the earth began to rock,
To crumble like dried petals in the giant’s hand
Bringing forgotten ways of life rushing back to settle in,
Along with memories of the desire for a voice not silenced.
I hadn’t remembered a time before the silence.
The memory went the minute that I rose
To my feet to see the old friend who’d come in.
It had been years since we last spoke and I’ll never forget
How cold it was once again there standing hand in hand,
By the bay at low tide our bare feet on sharp rocks.
But now alone. Alone, and not alone, I ask the sea a question for each rock.
Will I spend my life here, wrapped in this web spun of silence?
Could I still hold my voice with these cold callused hands?
Could silence pierce me like thorns on a rose?
But the sea interrupts, and it begs me “forget,”
Undecided, distracted, I return and walk in.
It was seven years ago, in rock cold silence,
That I rose from my ashes and threw up my hands.
In Devon or Cornwall. . . I always forget.
A day
A week
A year
They are all the same to me
The frost
The rain
The snow
They hold no opportunities for tomorrow
Nor the day after
Yet they come
Chill like empty pockets
Shivering to keep a promise
Shuddering to mask their purpose
Trembling to forget their duty
No more empty than
A day
A week
A year
Deceiving your understanding
Just as I do
Chill
In the frost of mourning.
Oops, I did it again.
__________________________________________
I’ve been thinking a lot lately about vulnerability.
An old friend (we met at university when I was still living in the Homeland about 15 years ago) called me the other evening. We hadn’t actually spoken (other than e-mails) in a long time, hadn’t seen each other in about 5 years, so we talked for an hour and a half. . . internationally. We talked about some difficult things, and it surprised me how easy it was to confide. When I hung up I briefly worried that I shouldn’t have been so honest, I mean, at least here on the blog, I know that if people didn’t want to know, then they wouldn’t bother clicking, but on the phone. . . well, you know how the ‘worst case scenario’ thought process works.
But my concerns were soon alleviated when I quickly received an e-mail from my friend saying that it had been good to talk and a very kind and empathetic comment on some things I had said. Acceptance from my friend, and relief from me.
I don’t lose friends easily or lightly.
You see, a very long time ago (shortly before I met my friend who phoned me, actually) I had another friend, this time from as far back as childhood, who I had thought would ‘stick around’. But when our lives travelled different paths, the communication stopped, though I tried to reestablish it many times. No responses. None. I had thought that whereas you could ‘dump’ a boy/girlfriend, that you couldn’t dump a ‘friend.’
I was wrong.
I had, in the distant past, confided many things to this childhood friend, but when life changed, when we suddenly were no longer children or even ‘youth’, those confidences didn’t seem to matter anymore. Perhaps he needed to sweep the past away. Perhaps I have been unfair to not understand my old friend’s side.
I saw this earlier friend when I recently travelled back to the homeland. I hadn’t seen or spoken to him in over 15 years and it surprised me how easily we slipped back into conversation. We talked for 3 hours over lunch about many things, about music, about our marriages, about mutual friends, about the old days. Almost like neither of us had ever left home or lost touch. . . but I have had no communication or replies since, and again I have tried.
No contact. None.
I heard or was told somewhere along the line that there can be no true communication between two people, no real friendship, no love, familial or otherwise, no meaningful interaction with God, and no honesty without mutual vulnerability that stems from trust.
On the whole, I agree with that. You, reader, of all people, if you visit here regularly, know that I can be quick to risk vulnerability, and I’m sure I do it for that reason. And generally I have trusted you with that vulnerability, though I may not even know you. Perhaps too quick to trust in strangers, too quick to establish impossible relationships between writer and reader. But for the most part I have found that in doing so, I have been greatly rewarded with the friendships that I have both reinforced and have found. By friends that see my blemishes, and ‘stick around’. I’d rather show those blemishes, as I’ve never been any good at hiding. I’m always found out.
But where there is trust, there is vulnerability and where there is vulnerability there is a risk of rejection, like with my earlier friend, and where there is rejection, there is hurt. I guess I got my hopes up after the reconnection.
There’s a part of me, actually, that doesn’t mind being rejected, as long as it’s early on in getting to know someone, as long as it happens before I have made myself too fragile in the face of the prospect of that rejection. If I say “this is who I really am” and you reject me, before I have a chance to lose too much, that’s ok. I can accept that. But if I spend years establishing a friendship, I will feel like my vulnerability has been trampled on under foot if they suddenly turn and walk the other way. (Thus an old, perhaps bitter, poem, written to an old friend, who didn’t ‘stick around’.)
So why do I put myself out there? I guess, because I think that if I do, put myself out there, warts and all, and you keep coming back to read, or to speak to me, or to waste/spend your time with me, then perhaps you won’t reject me. But there’s always a chance with friends who aren’t honest with each other that the secret of warts will be found out and the rejection is sure to follow. That kind of rejection hurts because it is never expected. So, I guess I’d rather show my warts. Because I know they’ll be found out anyway.
—————————————————-
“Time it was and what a time it was it was,
A time of innocence a time of confidences.
Long ago it must be, I have a photograph
Preserve your memories, they’re all thats left you.”
There are times that it becomes difficult to see past today, this moment, even. I have been as guilty as others. And when red joy fills my senses, when the moment is beautiful and precious, of course I never want it to end. My aim in life has so often been to collect beautiful or precious moments, a colour, a sunset, the cold crisp air, the sea…
But life is not so limited as to only contain the beautiful. The crisp air turns to bitter chill, the sunset turns to the dark and empty night, how does one endure these moments? I so frequently think I have mastered the strength to endure… then sadly find myself tested and shaky once again.
But I have said before, I would rather feel the sting of the chill wind on my face than never to have stepped outside at all. I would rather dive into the open sea and be swept adrift by the waves than never to have tasted the fresh salt air. I want to live my life. I want to fill it to overflowing, and I want to get drunk on moments. Beautiful, precious, fleeting, joyful moments.
Such a choice has consequences. The strength along the journey to find shelter in the wind, or an anchor in the undercurrent becomes tested and tried, over and over again. Life is not safe. Life is risky. You don’t have to live it and take the risk. It is your choice. But if you do choose to, it could be beautiful. Be warned, you may face potholes along the road.
And I suppose we never really know if we have had the strength to endure, to pass all of these tests, until we reach our journey’s end.
Originally posted on 8 Feb, 2010. . . I’ve always said life is cyclical. And now I am most definitely looking at a sculpture rather than a table. I just need to come to terms with deciding whether it’s art or simply junk. Right at this moment in time, whatever it is, it certainly doesn’t feel beautiful.
____________________________________________________________
Who am I?
You tell me, because I’m not sure anymore.
I’ve tried to collect together all of the things which I’ve known myself by over the years, but it just doesn’t seem to make a coherent whole. It doesn’t make any sense. And then I try to collect together all of the things that have influenced or even directly caused those things which I have known myself by and I realise that for a large percentage of my life, I have come up with some excuse or other for “not being myself today/this week/month/year/decade/etc”. And if percentage wise I’m spending more time making excuses than actually ‘being myself’, then how can I really claim that the me that I am less of the time is the ‘real’ me?
For a large percentage of the time, I have always felt that my life has taken ‘time outs’ and I, the ‘real me’, was just sitting in waiting for whatever influencing factor that was masking me to go away, or for me to finally achieve the back to the real me’ state.
But I must have been mistaken. Because the mask never comes off. It only seems to change. It changes from day to day and year by year. And saying that makes it sound like it really must just be that ‘changing thing’ that we’re all supposed to do as we go through life anyway, but for some reason it doesn’t quite feel like that. It doesn’t quite feel authentic. It doesn’t feel like a natural evolution.
My striving has always been to be my most authentic and honest self, like some mythical, unblemished, Platonic Form or something, to all and particularly to me. However, whereas I used to think I knew who or what that authentic Form was and what she liked and how she thought and how she acted, I’m just not so sure anymore. When do the blemishes become no longer something to sweep away and make excuse for, but become the thing itself? What if all my blemishes aren’t something added to cover up me, but are actually now me?
If you start with a table and break off one of it’s legs, you can probably fix it back on, with the right glue and nails. No harm done in the end, it’s still a table. But once you start to take a chisel to the table and gouge out some big gaping holes, it starts to become something a bit different. And you no longer wait for it to be fixed back to its ideal state, you have to accept that it is now either a sculpture or junk, and not useful as a table any longer.
And lately I’m starting to feel a bit like that chiseled table, starting to accept that there is no ideal Form for me to become anymore. And I’m wondering how much I get to control what the finished sculpture of me will look like. Or do I simply call it junk, throw it all out and start from scratch? But if that were the case, what do I do with all the stuff left over, from everything that has gone before, the thought patterns, the beliefs, the dis/likes, the behaviours?
I think in the end I just have to keep chiseling. But without my Platonic Form to model myself after, how do I know what my eventual goal is anymore?
A murder of crows gleaning
Amongst the bookshelf houses
Throughout half-timbered pretences
Of history gone to seed
And futures denied
The crisp and dying grasses
Fade without sun
But nourish and feed
In death and explanation
Hands that flake and crumble
Against hands that hold such strength
The things we have gleaned
Serve to restore, to abide, to hold,
That which never was.
Conflicted
Folding chair lives
Fourth of July
Grey hair extending
Concrete garage
Same old transparencies
Holding onto images
Instead of each other
Uprooted fading pictures
Constructing memories
Consecrating stories
Smiles’ security
Laughter, defiance
Enough to hold onto
Perpetuate meetings
Fill up the porch swings
The lives
The ghosts
The anger
Turned from death to rheumatism
Changed from poverty to politics
Grown from demands of obedience
To pumpkin pies and cranberry jello salad
Melancholy’s sweetness
Close to memories of memories
Accessed from generations
Lost before my birth
Enduring
Not yet forgotten
Anger
Life stolen by children
Chaos
Violent grasping
Throwing
Hitting
Shouting
Arguing
Control dissolving
Locked in the closet
Along with
The pain
Loss never planned on
The War to end all Wars
Wasn’t
Interrupted survival
Around the dining room table
Clutching their brandies, their memories
Jangling their Martinis to Glen Miller
Disease in Father’s fields
Disease in Father’s body
Disease in Mother’s mind
Something to laugh about
Fond memories
Work that gave him a woman
Images, pictures of her beauty
Blazing eyes across a crowd
Preserved in black and white
Forfeited, traded for necessity
Practicality
Survival
The crumbling farm house
The model T
Work that stole the beauty from her soul
Work that gave strength to her body
And escape to her mind
He hid, stayed silent
The love of his life
Locked in a pregnant, tired body
A raging woman
Fading into the panic of continual childbirth
Pain
Turned to anger
The love of his art
An art to make memories, not food
An art to fill concrete garage studios
Folding chairs, respectful audience
Remembrance
Years disolve into
The War that stole sons from the table
The son that stole guilt from sanity
The children who met photographs and stories
Now come all to the garage gallery
Around the table
Folding chairs
Thirty years on the table is new
Shiny melamine to reflect any remnants of pain
Lace doilies to catch any drips of gravy
Forty years on
Forth of July
Lights out, slide show
Concrete garage
Laugh
The road they’d walked down
The road I walk still
Conflicted
Creating images, pictures of my beauty
Seen through my blazing eyes
Across a crowd
Remembrance
To carry me back to the table.
I had given it up completely. I was free, and even my body felt lighter and moved easier. A contentedness I had not known since childhood crept up on and began to carry me.
Then. . . oh what a change a day makes. An hour, even.
I was told, hastily reassured, that I, in fact, had nothing to grieve for. That everything was fine. That I was overreacting. Then why did I, do I, feel grief? How can I feel burning once again in that gnawing hole that is chiselled deep into my abdomen where all of my loss and past pain have gone to be locked away.
Somehow it all got lose.
Somehow the voices of my past heard something they thought they recognised. And in response, they started to shake and pull at the bars of their painstakingly forged prison. My past was stronger than the prison I had made for it. It was stronger than even the uniformed, thick set, muscled and armed guards that keep watch around my heart could beat back down into place.
I can’t cage them again. I am not strong enough to knock them over with the featheryness of my touch. A strong voice could woo them back into their prison and close the door on them once again.
I went to a poetry reading (a really good one) the other night and just loved hearing ‘readings’. So thought I might just try something a bit different. I’ve actually been complimented on my voice recently, so I thought I might try reading some ‘oldie but goodie’ posts audibly for you and see what happens.
However, the five minute limit on audioboo was a bit of a constraint, so had to do two parts. But don’t worry, It’s only about 7 in total. Enjoy.
God is Love. God is above and below us, inside and around us. God created us and we outnumber the stars. I too often find myself longing to be consumed by the stars and immersing myself within them.
The stars are fire. The stars are the Others. The stars are you.
And them. And myself. . . we are the multitude, the created, the mirrored image of the Creator, filled with Love, with God, with each other. All of us, in the fire. Within Love.
In my frailty I have surrounded myself, suffocated myself, with the Others and with little understanding, when I have wanted to hide from God. And in doing so have unkindly smothered them in turn. In my catalogue of errors, my hoard of rejections, vain assertions, I am left facing the Fullness of Things. The Fullness of my Solitude. The dark and open, starless sky of my night.
Oh Solitude, will you be mine again? Once the fickle adoration of the giddy crowd has gone from me, will you forgive, accept and have me back?
Faithless, inconstant, the multitudes are, and I have learned not to trust in the opiate of their esteem. Though I am drawn to their drug and I know how to fawn. Yet vanity is childish. I am no longer a child and when I became a woman, I put childish ways behind me.
So again, I must seek out my Solitude and stand strong and joyful against the barren void of unpeopled emptiness. For God chose to appear to Moses, not in the midst of the crowd, but in his Solitude.
2 There the angel of the LORD appeared to Moses in flames of fire from within a bush. Moses saw that though the bush was on fire it did not burn up. 3 So Moses thought, “I will go over and see this strange sight—why the bush does not burn up.” 4 When the LORD saw that he had gone over to look, God called to him from within the bush, “Moses! Moses!”
And Moses said, “Here I am.” 5 “Do not come any closer,” God said. “Take off your sandals, for the place where you are standing is holy ground.” 6 Then he said, “I am the God of your father, the God of Abraham, the God of Isaac and the God of Jacob.” At this, Moses hid his face, because he was afraid to look at God. Exodus 3:2-6
Moses hid his face, because he was afraid to look at God.
And God is love.
Who, if I cried out, would hear me among the angels’ hierarchies?
and even if one of them pressed me suddenly against his heart:
I would be consumed in that overwhelming existence.
For beauty is nothing but the beginning of terror, which we are still just able to endure,
and we are so awed because it serenely disdains to annihilate us.
Every angel is terrifying.
And so I hold myself back and swallow the call-note of my dark sobbing.
Ah, whom can we ever turn to in our need?
Not angels, not humans, and already the knowing animals are aware
that we are not really at home in our interpreted world.
Maria Ranier Rilke The Duino Elegies from the first Elegy
God is Love and he meets me in my Solitude.
Love is God and I hide my face from the annihilating flame of Love. Can I trust that it will not burn me, and therefore find Love in the hearts of Others, rather than only the heart of myself? A shared Solitude, perhaps.
I will only have strength enough for others when I find strength enough to face it. For the others I must face hold such Love in their hearts and if I am to face the multitudes, I must learn to face God.
This is my sleepy hello after getting to my lovely guest house near Glasgow Airport where I stayed for the first night of my trip. The owner was a nice man who made me an excellent cup of tea!
This is my slightly nervous entry just before going for my Doplar scan. Here I am now in my second hotel where I stayed for two nights. No one to make me a lovely cup of tea here. not even any framed IKEA prints on the walls here!
Incidentally, the Doplar scan I was having was basically an ultrasound that is taken with specially calibrated scanning equipment that allows the technician to see and monitor blood flow in the Jugular and Vertebral veins in the neck and also to measure their width and see if there is any stenosis or narrowing that would prevent the blood from moving freely.
And here is my final Vlog, for now at least. I’m home now. Those are my trees that you see behind me. (OK, technically they belong to the City Park, but I know better, that they are, in fact, my trees!
You may or may not have gathered (depending on how much you have looked into it, so probably not) that there is a trend among people who have decided to be scanned and treated for CCSVI of posting video diaries on YouTube to map their progress from before to after and through any improvements that may happen. So I thought I’d jump on the wagon. It will be a good log for me to look back over anyway as any treatment comes about.
This is a bit of a break away for me in this written blog, but here, i present to you my first attempt.
Well, it was about 5th or 6th attempt because I kept stopping and rerecording it when I made a pig’s ear of it. So here I introduce my real face to you (my real name’s still under wraps!) in all of its nervy “I don’t like having myself recorded, but this is for posterity” realness.
I will endeavour to continue to post, more interesting, Vlogs as things happen.
(please don’t laugh at me. I’ve never laughed at you. Well, I guess I have, but only when you were trying to be funny and you wanted me to. . . ok, I’m stalling.)
ok, today i am going to take off one hat and put on another. I am aware of the confusion it can cause you when I am not clear about which part of me is speaking to you, so today I am going to take of ‘the writer hat’ and put on ‘the hum drum everyday this is what i had for breakfast’ hat.
Except, I didn’t really have any breakfast. I had two cups of tea then opened my graze.com box about half an hour ago and ate three punnets in one sitting, withtout really stopping. (one of the problems I’m finding on gabbapentin is that I am very very hungry.)
Anyway, on Sunday I fly to have my CCSVI scan. The first scan is just a doplar ultrasound, so there are no nerves there, except for the plane to get there itself. This whole thing brings about a few points that are making it difficult to focus this week:
I haven’t travelled on my own for a very long time. And although I managed to get myself all the way to this country by myself transporting most of my worldly goods with me, I’ve had a few knocks since then and this level of travel makes me nervous.
This (domestic) clinic hasn’t really worked out a route to having the final procedure to fix the problem if it’s found yet. Nor how much it will cost when they do. which also makes me nervous.
They might find out that my jugular veins are not blocked or twisted closed. Which also makes me nervous. If it ain’t broke, it can’t be fixed.
I’ve already spent a lot of credit to get to where I am going and to have this scan. Again, nervous.
The one thing I am spectacularly not nervous about is having the angioplasty procedure to open my jugular veins if in fact they are closed. That’s a big deal for someone who has only recently overcome a needle/dentist/invasive anything phobia!
I don’t mean to try too hard.
But I do.
I don’t mean to be presumptuous.
But I am.
I don’t mean to make you roll your eyes at me.
But you do.
I am archaic inside of my naivety.
I know it.
I don’t mean any of it.
I never have.
making excuses
is a way of hiding
behind the shouting
behind the crying
in front of the honesty you couldn’t face
when coming to meet the one who
knows your coded
shouting
shouting
becomes no more than silence
speaking
becomes no more than silence
trying
becomes no more than hollows
echoing silence
dusty emptiness
cluttered vacant
looking
Aren’t they the most important things in the world?
Aren’t people the things which bring us most joy and pain all in the same instant? And the things which make us worry, more than any other things on this Earth, that we are actually completely insignificant?
Why do people break my heart? Even now, when I am meant to be older and to have gained some wisdom about my World and my life, people, all kinds of people, still break my heart. Why?
That’s not even to yet ask, how?
Perhaps I hadn’t had my heart broken enough when I was younger. Perhaps I deserve it now. Perhaps, I deserve it for walking away so coldly, from loves I no longer wanted, from the life I no longer wanted, the Land, the people I no longer wanted. Yes, perhaps I deserve it.
Do I deserve it for no longer wanting those things and people, or do I deserve it for actually walking away?
What if I didn’t actually have a choice? What if I hadn’t actually wanted to? Would it still be my fault? Would I still deserve it, the broken heart?
And what is a broken heart anyway? What can justify claiming that name?
And who am I ,anyway, to have thought that I ever had anything or anyone to lose to begin with? Haven’t I been taught that nothing is truly mine, it is God’s alone, and only lent for a time? Why should I be so possessive?
And is there a difference between people who don’t want you and people who you didn’t want? And people who went away because they don’t want you and people who were taken away against their will, but as they weren’t yours anyway, they would have never even have considered to have been leaving you, if they could have thought that, but they can’t because they’re distant or dead or apathetic?
and what about the people who aren’t dead? they’re not mine either! not you, nor you, nor those people who like me and make me think that i have people, nor those people who thought they liked me but don’t anymore and have given up trying to make me think that I am not alone.
Maybe a broken heart has the most to do with realising that we are, despite all appearances, really, alone.
I told a friend last evening that writing does not have to be useful or good to be worthwhile. I do believe that. I believe that the act of moving words, any words, from the inside to the outside of one’s head is a good practice that will serve one well in all interactions. It is necessary. And as all practice will have good and bad results, you must just put up with the useless, pointless and bad as a means of achieving the useful.
so I am only putting my keyboard where my mouth is when I say that I have:
Lots to say, no time to say it.
Lots to do, no energy to do it.
Lots of guilt for not getting things done, no focus to turn it into motivation.
The Flower child in summer holiday, my time and “energy” are rightly hers.
But I have deadlines that are already exceeded. I have physical and emotional things that need to be seen to, and they always seem to overtake the practical requirements and deadlines. . . however the undone practical things make the physical and emotional states worse.
There I said something. Maybe tomorrow I will be more useful. Maybe getting the practical, physical and emotional things wrong is just practice. Seems like an awfully long apprenticeship though.
As inspired by Prompt 2, Writing Workshop on Sleep is for the Weak
(note: this is from one of the subsequent Prompts, not the main Prompt of this week)
————————————————–
I know they say it’s False Hope,
but they also say it’s Hope.
Hope. Cruel Hope. Any Hope. Better than No Hope. I’ve known them all. Particularly the last one.
No Hope.
Dreams and Hope. Dreams are Hope. Dreams come from Hope. And I’ve been a Dreamer.
Been.
As a younger person, I was a Dreamer. I had Dreams and because I believed in Hope, because I had Hope, because I lived and breathed Hope, because I courted Hope, because of that, I created and held onto my Dreams.
For awhile.
But I woke up from those Dreams. I grew up from those Dreams, I was torn from those Dreams. I turned the movie in my mind off and started down the path of my Real Life. I told myself I wasn’t a Pessimist, I was a Realist and what Really happened to me was Real, and not Imaginary, not a Dream and I would have it. I didn’t want the False, I wanted the Real. So Real I could touch it, feel it, taste it, see it, hear it, hold it. And I watched Dreams sift through my fingers as if they were no more than sand.
But I didn’t know that the Real I could see, and touch and hold would not always be a Benevolent Parent. I didn’t know that the Real was not planning to be Kind. And I also did not know that by letting go of my Dreams, the Hope that made them would then betray me.
So when I Lost, when I woke up, when I Buried the Dead, went through the Fire, closed the Door, found myself in a different World, when I stood up and shook myself off and assessed the Damage, I found less of me then there was before. And I couldn’t get it back. I tried, God knows, I tried, but I never got it back. Whatever it was. I thought it was just the Dreams. . . but I found out it was the Hope.
You see, I found out that you couldn’t keep the Hope if you let go of the Dreams. I fond out, and i threw a tantrum. I found out I had no Hope left and I cried. I cried and screamed and wailed and pounded my fists and panicked and anything else I could think of to get my Hope back. But she no longer wanted me. She felt betrayed. I had forsaken her Dreams, so she forsook me.
Fair enough.
But then Somebody, somewhere had a Dream. Somebody took their own Hope and created a New Dream with it. and Somebody offered it to me. At a price. But I wondered. I wondered if I grabbed this Dream, though my Realist friends, though my Pessimistic sensibilities, though my hardened Heart all told me it was useless, there was Something left that Remembered.
And the Memory was alluring.
So I’ve decided that I want my Hope back. And if that means grasping at somebody else’s Dream, well, then I’ll have to do it. But that might just mean that those Realist friends, Pessimistic sensibilities and hardened Heart may have to go. I may have to Lose again.
And although it is hard to lose what is certain, secure and comfortable, it may have to happen. Although it is hard to reconcile with Dreams, it may have to happen. It may have to happen, if I am to have a chance at winning back the Heart of Hope.
When I was 15 or 16 I took a personality test in a psychology class in school. One lasting memory of that test was that it told me a set of people/characters who shared my personality.
Snoopy
Will Rogers
Don Quixote
Ok, the first two I knew, but the third. . . ??
I have actually started the book. . . um, several times. And I didn’t find it dull either, I actually laughed out loud at times. But I will admit that I never finished it. Hey, it’s big. Really big.
But most people at least know an allusion to the scene where Don Quixote plans to fight the windmills.
Just then they came in sight of thirty or forty windmills that rise from that plain. And no sooner did Don Quixote see them that he said to his squire, “Fortune is guiding our affairs better than we ourselves could have wished. Do you see over yonder, friend Sancho, thirty or forty hulking giants? I intend to do battle with them and slay them. With their spoils we shall begin to be rich for this is a righteous war and the removal of so foul a brood from off the face of the earth is a service God will bless.”
“What giants?” asked Sancho Panza.
“Those you see over there,” replied his master, “with their long arms. Some of them have arms well nigh two leagues in length.”
“Take care, sir,” cried Sancho. “Those over there are not giants but windmills. Those things that seem to be their arms are sails which, when they are whirled around by the wind, turn the millstone.”
—Part 1, Chapter VIII. Of the valourous Don Quixote’s success in the dreadful and never before imagined Adventure of the Windmills, with other events worthy of happy record
Why do I tell you all of that? No, I’m not trying to get you to understand some deep and troubling complexity to my personality. In fact, for once I’m going to take you in the opposite direction with this post. For once, I am going to put complexity down, at least for a short while, and point you towards a very simple concept that came and enveloped me the other day.
I had an epiphany the other day. I’d known the truth of it for a long time, but it never really sunk in before, I could never process it. Not quite like I did this time. Perhaps the thought was only for a moment, or a few moments gathered together, but…
And the thought made me calm,
And I felt all pressure lifted,
And I felt content,
And even relieved,
And I was able to be still and soak in the world around me without allowing it affect me malevolently for once.
My thought that occurred, as I sat there in my damaged, weakened and confused body, was that
I am dying.
And so are you, for that matter.
For some people it just takes longer than others.
And in the light of that understanding, the Importance of Things began to fade. As I gnash and claw my way through to get to the other end, to battle those grand, wicked giants, I understood that what happens to me today really doesn’t matter in the scheme of things.
And the giants sat down in their places and reformed into windmills.
And suddenly I was able to see the woods through the trees. Suddenly my own self importance and ambitions and desires lifted away and a heavy weight was thrown off of my chest. The burden of that yoke of a lifetime of belief in my own personal responsibility to everyone and everything and every principle, every law, to be responsible, and therefore liable, was at least momentarily, cast aside.
And I looked at the mess of my house, the mess of my head, the mess of my body, and all the treasures and memories that I have stored up within them all to hold onto and trip over as I stumble through this life. And suddenly, I saw them all from the outside rather than trapped from within. For once, I saw my own life as a stranger might, and I knew it would all dissolve and disappear in time and return to dust.
And it wasn’t a sad thought! Don’t misunderstand me, it wasn’t even an “enjoyable melancholy” moment of indulgence, there was no sadness in the thought at all. It was almost joy, it was a relief. Perhaps it’s my current awareness of my body in all of it’s dysfunction and failure that makes me throw up my hands and wilfully release what I have clutched at to hold onto my whole life. Maybe once you are able to release your hold on one little thing that you have no control over then other giants begin to fall into rows like the windmills that they really are.
It’s kind of funny how doing something so unpleasant can start to mean something to you. So much so that you really don’t want to let it go.
Since early February this year, I have been self injecting myself (supposedly everyday, but I’m too honest to claim I managed every day.) with a drug called Copaxone (see, the website says, just there, “WORKS”!), one of the main “Disease modifying treatments” prescribed for MS, all of which are currently taken by injection. I was on a different one last year and the side effects sent me loopy. I had been on yet another one years earlier, and it just made me sick. But for better or for worse, I was willing to try again, to grab that hallucination of a pair of reins on my spiralling life.
These are not cheap drugs. They were hailed 15 years ago as revolutionary. “This will STOP your MS from progressing! This will STOP your relapses! (and then in tiny tiny print “in 33% of the people who take it.”)
But 15 years later, it looks like the statistics aren’t quite working out so well as that. 10 years ago, I was getting political and campaigning for the ‘right’ of all People with MS to have access to these drugs, as it had been blocked on the NHS. I participated in the media campaign and hauled myself off to parliament for a major lobby, and in the end we got what we wanted. We got our drugs!
But we felt like we were doing something about it! We felt like we were working towards stopping the unstoppable. None of us thought we would suddenly not have MS anymore, none of us thought we’d be ‘cured’, but damn it, it wasn’t going to take us lying down!
No one can accuse me of lying down to this illness.
So I haven’t injected myself in over a week and a half. I can’t see the point. I relapsed. I did that which it was supposed to stop me from doing. It hardly seems worth the pain and the welts, the time and the (warning: safe pic, but a little bit squeamish, you don’t have to look) two inch in diameter bruises that come after each injection, if it’s not going to ‘do what it says on the tin’.
You’d think I’d be glad, that I’d be relieved of the lifting of such a burden. You’d think that I wouldn’t miss the time it took or the pain it cost or the hassle and uncertainties (what does this stuff do to me anyway?! no one knows!), or the unsightly bodily ‘mutilation’.
But it doesn’t quite work like that. You see, it was just like when I was marching up to the front doors of Westminster Abby with several thousand other people who were “like me.” I felt like I was doing something about something that can’t have anything done about it. The nightly routine, the almost ritualistic method of preparation, the needle, the injector, removing the bubble, the hot pad, the ice pack, the diary recording the details and data after each shot. . . maybe it felt like it kind of legitimised it, maybe just a little bit? Maybe it made me feel strong, in control? This is a hard thing, but I’m doing it, maybe?
But again, when it all boils down to it, that was never the point of doing it. The point of doing it was to stop me from having a relapse. And here I am. And I still don’t really know what to think or how to feel about it, as I’ve let go of those imaginary reins and now let the waves and the tide move and take me where it will, knowing, not only, that I can no longer control it. . .
well, saw the neurologist of oz yesterday and am now on a pretty hefty dose of steroids (short course, though), and consequently am a bit loopy just right now. (no wisecracks, if you please! )
Realised yesterday that I hadn’t left the house unaccompanied in a week. I’m managing to put one leg in front of the other now, more or less, and have even mostly stopped dragging my left leg behind me as I go, but legs really feel like hollow tree trunks that fill with lead weights with every step. My hips burn with pain after trying, because the nerve response in the muscles is so poor that I’m having to put a lot of strain on my joints for the movement. I’m getting such cabin fever. I want to get out, I want to see people, I miss even my generally low state of independence, because at the moment, it is even lower.
Problem is, even if I do manage to ‘get out’, right now, and see anybody, I’m just not quite human. There is very little going on in my mind because my brain and body have taken all the resources. And, of course, any interaction with other human beings is currently filtered through a drugged haze. One moment I’m euphoric, hyper, excited and energetic (without the bodily capacity to do anything with that apparant energy, though I have found out that feelings of energy wile on these steroids is really only an illusion. There is none, you just think there is.) and the next moment I’m blank and sullen, empty headed and robotic, waiting for something to happen or someone to do something, either with me, or to me, or for me.
I have constant little floating black specks in front of my eyes. my acupuncturist has always said that this is a sign of an imbalance in one’s liver.
My balance and spacial awareness are completely wrong, though I’m not too bad at getting around my own house, probably just because I have things to hold on to and I know the layout so well. The dizziness has kind of changed into light headedness with a constant headache of varying levels. I feel cognitively broken, empty, very apathetic and wholly pointless, useless, futureless, though not depressed about it. It is just taken as an unemotive and plain fact. Yes, at times I think that I must be a bit sad, but I don’t really care. It doesn’t make much difference really, in the scheme of things.
My legs hurt, my hips hurt, my calves hurt. They burn and ache, but I can’t really be bothered to take any pain killers. They barely help anyway, and it just fatigues me to move to fetch the tablets and get them out of the packet. I feel like I’ve run for miles, yet I’ve barely left the house.
I have started to look at wheelchairs, not because I won’t be able to use my legs at all when I’m out of this relapse (I mean, I don’t know how much use I’ll be left with, but I’ll probably still be able to walk with a bit of physio), but because I’m really starting to accept the realisation that just because i can put one leg in front of the other, doesn’t necessarily mean that I should. It causes too many other problems, fatigue, eyesight, pain, etc. And it has done that, really since 2008. I never had a full remission from the relapse I had that year. That’s the year that things stopped getting better, fully remitting.
And I have always sorely regretted it.
It is a strange thing to be so blank in the head. I’m used to having lots going on in my head. But I’m simply in limbo. I don’t know where I stand right now (if I can stand at all!) so I can only wait to find out.
In a way, I’m really fairly numb. And I currently don’t care if I’m ever not numb again someday.
Ok. I suppose I should post a new entry at some point.
If nothing else, it would be rude not to say hello to all of my new visitors who have been popping by ever since the love bomb hit.
The only thing is, I’m not feeling very eloquent at the moment. You see, since that migrane last Thursday, my MS has gone into relapse. When a relapse happens, I generally become very practical, head down, plow through, try to survive, and think about the implications of what has happened later. In the midst of relapse, I don’t have the luxury of thinking about it. I know from experience that this will pass, so lets get it to go away and then I assess the residual damage and cry about it. But not now.
Thinking has to come after survival, but realisticly, writing can only come after thinking.
Does that make sense? Anyway, that’s why I’m being a bit silent on the writing front at the moment. Everything’s ok, because nothing is, just right now.
You may notice the unusually high number of comments on my last post. This can be explained by clicking on the link above.
This is just a very quick post to acknowledge and thank everyone, both who I know and who I don’t, who made the effort to reach out and encourage me particularly this difficult week. I can not stop to reflect or feel right now because I can’t write or think or type on stay on the computer anymore because I’m recovering from a severe migrane that came on last night when I was on the late train travelling home. And I’m still in quite a bit of pain, though at least upright now.
Needless to say, I am completely blown away. It’s obvious that most of these people, whoever they are, really did read my blog, and often not just the last entry, but often several and my “about” page. I’m still open jawed and a bit bewildered and confused. And well, to be honest, drugged with painkillers at the moment, which prob isn’t helping my ability to process it.
Thank you. And particular thank you to World Without End. Thank you for being a friend.
This morning I went into town, birthday shopping for the Flower Child. And my legs “cut out” on me. That hasn’t happened in years. I sat down for a coffee and when I stood up again, I was too weak to move my legs. They felt hollow and a bit painful. A feeling I am well familiar with from old relapses, but things are different now. It used to come and go, everything used to go away. The legs snapped back into place today. But other things don’t. And I’m starting to face up to the fact that this may be downhill from here. I got incredibly lucky there for awhile, and it made me complacent.
I walked passed the mobility shop, gazed at the scooters sitting outside and my heart shuddered. I had a simple task to complete this afternoon, and I just couldn’t do it. The eyes, the dizziness the weakness; I just couldn’t do it. I feel heavy with the realisation that “this is real. this was always going to happen. I just hadn’t admitted it to myself.”
Has it finally happened? Have I turned Secondary Progressive? This Armageddon moment that I’ve been convincing myself for 14 years that I could keep from happening? And I did keep it from happening for awhile. My doctors all raved about how well I was doing. But the relapses don’t really happen anymore, not quite like they did. I just don’t function in general. And I barely notice it getting worse until I think about things I did last year or even six months ago, and realise that it’s not just a case of just trying harder anymore. I really can’t do them now.
I can see everything and nothing. I don’t even know my friends when they’re standing a nose away from me anymore. The vertigo and dizziness are so bad. I can’t read anymore. I can’t walk a few hundred meters without making myself ill. I can’t describe it. And it feels unfair that I begin to emerge from my depression and trauma from recent years, only to reap the effects in my body so severely. I just want to enjoy my life for once. I’m tired of things being so hard. I’m tired of it. I’m tired of not being happy or even just functional. Life has Things in it. I want those Things. I’m tired of sitting on my ass just because I can’t do anything else. I’m tired of only going to “safe” places that I know well and that aren’t new. I want something new, but new isn’t safe. If I don’t know the escape routes (public toilets, cafes, bus routes, benches, air conditioned shops. . . where my friends are. . . ) then I just can’t go there. Going into the playground with the Flower Child suddenly becomes threatening and dangerous because I can’t see the faces of the parents around me. I don’t know if I know them, I don’t know their expression and can’t judge what to do because of their mannerisms. I can’t read people anymore. It’s a lost sense to me to not be able to read people, to not be able to read their faces.
I can’t read books anymore. I try, and I fail. I want to. I want to read. I miss reading. The combination of eyes, cognitive issues and fatigue closes that door. I want to read.
And cognitively I can’t remember anything, even seconds after the prompt. I think I was doing something yesterday that I managed in the end, but it took me so long to do it, but I can’t even remember now what it was. I remember thinking at the time that it was taking me a long time.
Yes this is a whinge!! What have I been playing at for 14 years?! Did I really think this wouldn’t happen to me? No. . .
I just wasn’t ready yet. Things are different now. Somewhere, I know that. I don’t want to do this. I don’t want this. I want to enjoy my life and if I can’t enjoy it, I just want to live it. I don’t want this. I don’t want to go here.
He said I seemed a bit “wary around politics,” and that I’d tended to say “…but anyway, that’s politics,” and changed the subject occasionally.
This is true. He was correct. I run away from talking about things political or issue based or idealogical. I hadn’t thought about the fact before that this probably leads people to think that I am apathetic.
I am not apathetic. About anything. That’s a large part of my problem. It’s who I am. I simply care too much.
I think I learned that several years back. Perhaps I learned that I did not have the energy to be effective at anything I was attempting to do. I was an “activist” once. I joined campaigns, I wrote letters, I talked to the media, I was loud and vocal about my beliefs, I was part of a lobby on parliament for Pete’s sake! I CARE about things. But why has all of that turned into “…but anyway, that’s politics.”
Because as the years have gone by, I have taken emotional journeys that I never expected to take. I have been continually bowled over by your comments telling me that I have been strong, because I really do have the Robbie Williams response in my head of “You think that I’m strong. You’re wrong. You’re wrong.” Because I guess, although I have taken a light to the dungeons of my life so you can have a peak, at times, although I have been uncomfortably honest with you, at times, I don’t give it all away. And if I did, you might change your minds about me. I don’t want you to change your minds about me.
Because, you see, depression reacts to stress. MS reacts to stress. And politics and ideology contain a hell of a lot of frustration and failed hope. Being involved, even in the discussion of it (and I’m not just talking party politics here, I guess any ideology, or thing one wants to see become better), contains the despondency of “will things get better, or not?” And if the answer is “not” then I have to deal with my own responsibility within that. (as any good existentialist would!)
If I were a stronger person, if I succeeded at being more single minded and focussed on the prize, then maybe I could have continued to do it. Maybe I could have continued to beat my head against those brick walls until they fell down despite my bloody forehead. But throw depression and MS into the mix and the stakes get personally higher. A deterioration in either camp can have insurmountable consequences.
And right now, it’s all I can do just to make sure that my relationships don’t fall down around me. I think my avoidance is about focus, actually. Prioritising what I might be able to change, my own life, and accepting what I feel that I am helpless to change, the lives of others. It never occurred to me that that might be a selfish thing, but now that I write it out in black and white, it does seem to appear that way. Perhaps I need to think more about it. Perhaps I need to learn who will not reject me and my views and admit to having them.
I guess the whole thing comes down to two simple facts. 1. Politics and ideological viewpoints are always going to be rejected by somebody, and somebody will decide they don’t really want to know you when they find out what you think. And 2. I can’t handle rejection.
Yesterday was difficult. Tiring, full, frustrating, demanding, feeling ill. . . well, all of those kind of ‘bad day emotions’ that i really doubt I need to explain to anyone. Thus the lack of entry for you.
But the point is, I held it together, and return tonight to try and write something. Accomplishment #1. A year ago, I would not have managed so much. And although I am physically more progressed than I was then, I’ll take this for now.
Now I am at home alone, except for the Flower Child, tucked up in her bed, and, so far, sleeping well. Have been skimming through old journals looking for inspiration for something to write about. (and when I say ‘old’ I’m talking about many books stretching back to when I was six.) The problem with doing this is it invariably brings on nostalgia and delicious melancholy. Add a respectfully sophisticated glass of red wine and a continuous stream of Laura Marling playing on Spotify, a sky approaching twilight and a poorly cat slouched by the window and the recipe makes for a gluttonous meal of navel gazing. Not terribly conducive to the best of writing, really. But I will allow the indulgence if you will.
Singing along with one of the tracks I pleasantly discover that my voice actually quite suits her vocal range. Shame there’s really nowhere to sing those kind of songs for me.
The journals contain, not so much a progression of my personality (I seem to be a pretty annoying and ‘uncool’ child, but suddenly take a quantum leap into social acceptability when I turn 14 or 15), but they focus mainly on much factual information. Until I started to think about things rather than to simply document things.
My very first journal was a small hard covered book with a red spine and diamond checker board pattern on the front with a red heart in each diamond. It was a gift from my 25 year old sister who was managing a book store at the time. The very first entry I ever wrote was “Feb 7, 1983 nobody wants to play with me!” Ripped up and taped back together notes from school mates on school notepaper giving evidence to various fights and arguments are folded and stuck into the front covers. What a way to begin my written history! Between the ages 6 and 10 I wrote mostly about “what I did today” or complex social problems (complex for 8 year olds anyway).
Several crushes dominate the years between 10 and 15, and enough “he loves me, he loves me not” over-drama (trauma?) to make the Sweet Valley Twins feel sick.
At 15 my documentary style seems to change suddenly with both my first boyfriend (“And that’s when he kissed me.”) and my all time, favourite teacher. She was an English teacher (grammar, writing composition and literature) and I thought she was wonderful. I started a journal for an assignment where I took a quote each day and wrote about it, for a month. Looking back, it wasn’t far off from my blogging style. At least I got a good grade on the project.
My boyfriend introduced me to art and poetry and my teacher introduced me to writing, abstract thought and the expressing of emotion in words. At the same time my sister began to try to reduce her burgeoning library of books, mostly literature and philosophy, by giving many of them to me. I had always read, but I began to read.
It is interesting, then perhaps, to realise that the age I was when I first became depressed was 16. At 15 I learned to think, to read, to write, to appreciate art, and at 16 I became depressed. At 15 I began to look at the world, not just myself and my own little bubble; the following year I became depressed.
Now I really don’t think that that’s an unrelated coincidence. And to be honest, I would rather know how to think and to appreciate the world and its treasures around me while being depressed by it, then to go happily through life being blissfully unaware. That’s just me, and of course it’s probably a completely nonsensical and irrational idea. I should probably rather value happiness. But I don’t think I could give up the art and the books, the thinking and the writing.
So the last few posts have been slightly, er, um. . . morbid. Don’t worry, those aren’t my overriding feelings at the moment. It’s just all of the cluttered up blamange that sits in some kind of waiting room somewhere in the back of my head and when i open it up to take a look, these are just the things that happen to come out. That’s the funny thing about a blog, it’s so immediate, so momentary. You write it, and then it’s gone. I’m ok with that. Everything I write is ‘real’. . . it’s just not ‘everlasting’.
Thanks so much to everyone who has left comments recently. i’m loving it and whether you mean it to or not, for a moment or two, at least, it helps to dispel occasional, overwhelming, empty feelings brought about by any isolation and disconnection.
Today was one of those “humble[] and most indifferent hour[s]” that I wrote of last week. One of those “i can’t always be bothered with capitals” days. You know one of those days that I said would not keep me from writing.
was today so difficult because i’ve been awake since 2.30 this morning with insomnia and am steadily approaching delirium? or was it because we took the cat to the vet with a torn knee ligament and found out she has that AND advanced degenerative arthritis at the young feline age of 6? Possibly the sun and heat reacting badly with my MS in the park earlier making me weak and shakey? or was it the meeting with the bank manager? or the Flower Child’s over-sensitivity and tantrums at dinner and before bedtime?
Yes, yes, yes, yes and yes!
And that is also why this is just about as much of an entry that you’re going to get today.
Yeah, ok. So I left a few days between posts. I actually did that on purpose, but I will spare you my reasons. So, as I now have several days of abstract thinking piled up in my head stopping me from writing anything coherent, I am going to take the decision to allow myself to just open my head and see what’s in there, in a stream of concious.
Unfortunately, it may be a load of . . . well, I’m sure that it could be edited down.
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About two weeks ago I saw my therapist.
And as usual I spoke of many many things, but this time, somewhere along the path of formative patterns of thought, we somehow got onto existentialism.
I think I’ve worked out what my problem is.
It would seem that the entire last 18 years of my life have been wrapped up in some sort of long term “existential crisis” of varying degrees.
The Wikipedia entry states that “An existential crisis is a stage of development at which an individual questions the very foundations of his or her life: whether their life has any meaning, purpose or value.”
But that’s not been a “stage” for me. . . that is me.
It’s not that I’m doubting the existence of God or the reality of Things, it’s that I continually come to question the worth of things. I suppose I was raised by a very strict “Fundamentalist Christian” type of thinking which, although I have moved my doctrines away from it over the years, has still had, at least, two lasting noticeable effects.
1. No matter how hard I try to battle the misguided (at least I believe it to be) doctrine of the elevation of ‘the spiritual’ above ‘the physical’, I was steeped for too long in the culture of it to break away from the “worthlessness of physicality” as it doesn’t last, it dies. no matter how often I remind myself that I know better than to separate the physical and the spiritual.
and,
2. that when I am confronted with number 1. I begin to question “whether [my] life has any meaning, purpose or value” being that it’s the life of a physical being. who is going to die someday, anyway.
When I was about 6, my Aunt died. I would ask my mother questions like “what does death feel like?” and I think she replied “Well, it feels like nothing.” So I have vivid memories of lying in bed at night after my Aunt’s viewing (which is more or less an open casket viewing of the body before burial) and closing my eyes and trying very hard to not feel anything. I tried not to think or feel or want. I suppose what I was attempting might actually be called meditation, but that wasn’t my six year old intention.
Then I realised that I would never see her again. I don’t remember whether my childhood tears were because she was dead, or for the realisation that someday I would die, and feel nothing, too. That someday you will die. That someday everybody will die. I kept trying to close my eyes to feel nothing so that I would know what death felt like before it happened.
That may have been the deep, far-away roots of my existential crisis. If we’re going to die, then why bother? (so is this also the root of my reoccurring depression??)
What does death feel like? Nothing.
Now I certainly don’t know if that’s true or not, but I was told that when I was 6 and it surely got into my way of thinking and I am certain it influenced something in my development.
Is ‘connecting’, this thing I keep trying to do with other people, actually possible?? Have I always just been fooling myself that there is a way of interacting with others that means that we are not essentially completely alone?
If at the end we are left with “nothing” then what is the “something” before it worth? I used to cut across the graveyard when walking to a school friend’s house, and so many 19th century stones simply said “Here lies Mr. Smith…and his wife.” That’s ALL that’s left. All of their love, joys, hopes, pains, sorrows, decisions, work, everything. . . “Here lies Mr. Smith. . . and his wife!” That’s it.
Is it true, then, that we live and we die alone? Therefore what is the worth of any of it? Why do I keep bothering to try and “connect” with somebody/anybody/everybody/you if I, as a completely independent and lone individual physiological/psychological being, will never completely share that experience (of being alive, of being me) with anyone else nor will it last. If it won’t be remembered past a two line engraving, if I am as small as I know that I am, and if you are as small as I know that we all are, and we’re all these little bubbles of life/thoughts/pain/love/joy/feelings/etc. that can’t ever truly know anyone else, then what’s the freakin’ point?!
I have often been reminded that, when I was little and learning how to speak, my toddler word for “fix it” was “ficcit”.
“can you ficcit for me?”
My mother still uses the phrase.
I have learned over the years that no one can ficcit for me.
My dad tried and tried. He was a “fixer”. He fixed my car, he fixed my bike, he fixed my first university dorm room, he fixed my boyfriend (well, he would have done. as it was he just scared him.), he fixed my car… well, my car was the most frequent thing he had to fix. Between 1992 – 1996 I drove a bright orange, 1972 Volkswagen Beetle named Sid. (after Sid Vicious, of course.) He bought it for $300 in 1991 and rebuilt the engine and reconditioned all the bits and bobs and added a decent stereo and gave it to me when I turned 16 and passed my driving test.
Dad fixed things.
My dad was also slightly obsessed with health/body/well-being/weightlifting/vitamins/miracle cures/body builders/biofeedback/chiropractic/protein drinks and anything that could fall under that kind of category. In other words, he spent his life, trying to perfect his body so that he could cheat death. He believed in taking as many painkillers or teaspoons of cough syrup as needed. Doctors and hospitals were for fixing people and he believed they could do it. The rooms of our house had humidifiers in the winter and dehumidifiers in the summer. He was scared of illness and scared of death. He was scared that no one would miss him when he did die. He was scared of being separated from me and my sister forever. (cue personal guilt for having moved 4,000 miles away from him 2 years before his death…nevermind, another story for another day.)
His “obsession” with bodily perfection and freedom from all illness/disease/bacteria/excess weight apparently began during the War (WWII that is). My uncle (dad’s youngest brother) documented in his written depiction of our family history that my father was in the Army in 1942 just before his countrymen were called up to fight. In the barracks syphilis was rife and this, so says my uncle, is where dad’s paranoia about his health began. He was discharged from the Army on mental health grounds (I have never been clear as to whether the diagnosis was genuine, or a desperate attempt by him and his mother to get him out of the Army. I suspect a bit of both. He never talked about it, and the stories of old men [i.e. brothers] change and evolve over the years).
He left the Army only months before Pearl Harbor happened. Three of his brothers fought in the War. Two fought in Europe andd one died in the South Pacific. Dad never got over the guilt of not going with them to fight. He didn’t know what was about to happen. Who did?!
So if he could control anything, he was going to control his body. He was going to control his house, his work shed, his engines, his electrics, his plumbing, his heating, his gutters. . .
He was a mechanical engineer and designer by profession, but, being a bit older, he retired when I was 4 and opened his own gymnasium. He had no formal qualifications, but he became a physical trainer and was so respected that the local hospital started suggesting that some of their physio/crash victims go to him. And he rehabilitated people. He taught people what to eat, how to exercise. He taught people how to walk again.
He fixed people!
His life began to spiral out of control again when both he and his wife (my mother) got cancers, but still he was triumphant when they both received the all clear after chemo and radiation treatment. Again, fuelling his mistaken idea that if something “went wrong” it could be fixed.
Then, one summer, I came home to visit.
It was just for the summer, for three months. I was 20. He was nearly 80. But something happened that he couldn’t fix. He tried to find the right foods, the right supplements, the right exercise regime, the right tablets, the right injections. . . he couldn’t fix it, he couldn’t fix me. And, quite literally, I have always feared, it almost killed him. One of my lasting memories of my dad was the night he stayed awake with me all night because I was in too much pain to sleep. And he let me cry. That was all. But I’ll never forget it, and looking back on this man of ‘bodily perfection’, I think I can see now what it did to him to see me suffer in my body. His understanding of his entire world began to crumble, because no matter what anyone would ever do for me. . . I would never be fixed. They said that, and they meant it. MS. Incurable. Unfixable. He didn’t want to believe it. I did believe it. I never planned on or hoped for getting fixed.
I’ve learned that there will always be someone offering to “fix” me, and I’ve learned that maybe sometimes they can help, but nothing ever truly does “fix it”.
But I’ve still got a stubborn spark of dad’s determination and faith and I dream of the person who someday will. And that someday might happen, this side of the Jordan.
So if I’m going to do this posting everyday until I connect thing, does that mean that I can only post once a day? I seem to have thought too many Things today and they won’t all fit.
Just the act of having purposed myself to write again has meant that, once again, I am going through my day and noticing Things again. Life loses so much flavour when you stop noticing Things, and I find it interesting that I seem to be more likely to notice Things if I might be likely to write about any of them.
I find that about photography as well. I notice more if I look at the world around me with intent to Do something with it. Being someone who reads books and loves art and has studied histories I am all too aware that for some, the only things that this world will continue to hold of them and their lives are their gravestones. But others will never be forgotten because of their words, their art, and the places where they have crossed paths with others. Perhaps my soul holds a vain, self centred narcissist, obsessed with immortality? Someone who just doesn’t want to die. Perhaps I can not bear to go through life’s difficulties without feeling that they were at least worth something more than an epitaph.
This noticing of Things, however, means that I start to write things in my head, lots of things in my head, so many things, in fact, that some would accuse me of not really experiencing or living my life for its own sake, but only for the sake of a piece of writing or a photograph to convey to other people.
Hmm, maybe that’s it. Other people, who haven’t seen what I have seen or experienced what I have experienced or understood what I have understood. Is it that I want to try and make myself less alien to you and you less alien to me? Perhaps that’s why I love your comments so much. Where we cross paths, where we “connect”, is where I stop feeling alone. Too much of my pessimistic personality is extremely existentialist (every human being is essentially alone in this world and must make their own choices and decisions to create a valid life etc. etc. etc, you know that kind of thing). It’s just that I want someone to prove to me that that isn’t the reality of how things work, that we could be more of a collective entity than that. I don’t know, collectivism may just be a fantasy. Maybe we are really alone. Maybe the only existence, the only “reality”, that I have is in what I write or what I create.
I think it was in a philosophy lecture at university, all those years ago, that I began to doubt the solidity of reality. How do you know that what you see is actually there? How do we know that what we have said or done was not just a personal illusion? Perhaps I have simply gone through my entire existence (“existence” being a “fact” to be debated anyway) fooled into thinking that there are actually any concrete realities that can link us together has human beings.
Ok, pull brain back into “functional mode” and find a rock to sit down on for a minute.
Ok, I hear you. But that’s just it. Because my head seems to go off on one of those tangents every now and again, I need to hear you! I need to ground myself in something, in you, friends, even if I don’t agree with you. At least I would have something to judge what I do think by. I need to look at the Rock that I find myself sitting on and look at it thoroughly next to yours just to make sure that what I perceived as a Rock isn’t actually a bowl of jelly, because it certainly doesn’t look like what you call a Rock. It looks more like, well, a bowl of jelly.
I am aware that in one sense that is me always assuming that I must be the wrong one and that your Rock must be more real than anything I will find myself sitting on. Nevermind, I’ll save the psycho babble for another day. What it comes down to, is that whatever it is that I’ve sat down on, the only way for me to look at it and decide what it is, is to write, or create, it into being.
So, as I stated yesterday, I am going to attempt to kick this kindof ‘writer’s block’ by, well, writing. I have full intention to connect and find myself and you again by simply writing, perhaps everyday, at least for awhile. Whether it is worth tuppence or not.
“There is only one thing you should do. Go into yourself. Find out the reason that commands you to write; see whether it has spread its roots into the very depths of your heart; confess to yourself whether you would have to die if you were forbidden to write. This most of all: ask yourself in the most silent hour of your night: must I write? Dig into yourself for a deep answer. And if this answer rings out in assent, if you meet this solemn question with a strong, simple “I must,” then build your life in accordance with this necessity; your whole life, even in its humblest and most indifferent hour, must become a sign and a witness to this impulse.”
–Ranier Maria Rilke
So here I am. Looking to my muse (Rilke, of course) to guide me back to my “pen” and to help me find colour and life in the most “humble[] and indifferent hour.”
I certainly have plenty of humble and indifferent hours to use for my blank canvas.
I keep starting entries and not finishing them. I’ve gotten myself out of the habit of writing. This, I believe, is not really a good thing. Though perhaps the break was necessary in order for me to ‘recentre’ myself.
But, unfortunately, it does mean that I’ve got writers’ block.
I suppose the only way to break a writers’ block is to just write. I trust you’ll forgive me if I write and have little to say, as of yet. I’m feeling a bit disconnected and need to reconnect. To people, friends, places, thoughts, emotions, myself. . . and past experience has shown that I can connect those things through writing them into being.
Or at least I was told that when I let an old friend know that I got a 73% (first class mark or an A for countries where the university percentage points are a different scale) on my most recent photography project!!
I am really very unmitigatedly excited.
Some quotes from the tutor:
“You’ve submitted an excellent body of work, very well presented and realised.”
“Your final project is highly successful, and the darkroom production of your images, along with the final presentation shows your chosen selection off perfectly.”
However she did say that my last print was still too dark (changed it a few times), but that was the only fault she could find!
I had fully intended to go to London for this event today, I even booked myself a place, but knew that I would end up pushing my luck healthwise if I did a 4am to 10 or 11 pm length sized day and then had another late night out on my photog course tomorrow evening.
So I will be watching it on the live webcast from home instead. The meeting is taking place between 1-3 pm BST (British Summer Time), 8-10 am EST (Eastern Time Zone, U.S.) and I think that makes it starting at about 11 pm Sydney Aus time. Sorry, I’m not great with time zones. It involves numbers and calculations!
anyway, here’s the link if you want to join me in watching, or at least some of it. I’m really hoping that there will be a useful discussion here, that the UK MS Society is open to listen, not just preach. I very much fear it will be the latter.
That link will take you to a page of explanation from the MS Society (UK), then click on the link that says ‘click to watch the webcast’. You may have to unblock your firewall for the site for it to work.
My Life Transplant was sadly being rejected. So instead ‘they’ suggested trying something a bit different, not new, just new to me, just to see what happened. Would things go well, or not change at all? It didn’t seem like too much of a risk, so I thought, well, if I never try, I never know.
Just over a week ago, I tried. But I immediately lost my voice.
No, not my speaking voice, but the voice you hear here, when I delve into my soul and pull out what dregs of experience, emotion, thought and life I can find. The voice by which through words I vomit up whatever it was that I found onto the page. It all left me. I couldn’t find it, I couldn’t dig for it, I couldn’t use it, there was nothing left to find anyway. . . I didn’t even want to.
I didn’t want anything anymore. I didn’t want other people, I couldn’t understand them when they spoke to me anyway. Best to avoid them completely. I was confused, I was dizzy, I was short of breath, and tired, sleepy, so sleepy. I slept for hours each afternoon. So confused. What did it mean those sounds that happened when others moved their mouths. I didn’t want things, they didn’t help. Did I mention the confusion? I didn’t want to go anywhere or do anything, I didn’t have the energy, and besides I couldn’t risk encountering other people, a bit of a change for this extrovert. I stopped being able to feel anything, other than a pain in my abdomen and chest that told me that somebody I loved must have died. I didn’t really care about anything and I didn’t really care that I didn’t care anymore.
I’ll spare you, and me,the details of the other strictly physical effects. Not that I really cared anyway, but…
It took one prescribed tablet to remove my personality, my emotions, my wants, my desires, my ambitions, my society my intelligence my humour and any emotion other than grief. It happened within 12 hours of taking one tablet at the lowest dose. I took 5 tablets in total over 5 days, as prescribed, before I was able to string enough thoughts together and make sense of them to decide that I could just stop.
That was just over a week ago that I stopped taking them, and I think I have mostly returned, at least to the way I was just after the Life Transplant got rejected. It was a very gradual process coming back. I regained just a little more each day and now the confusion and grief are no longer constant, but only occasionally leap up when I least expect them. But only for an instant or so. I can just about handle that.
I just thought I’d let you know. It’s more or less over now, but I feel a bit funny trying to remember how I did things before. I guess it was just a minor blackout, a couple weeks lost (one diving down, one climbing back up), but no more. A lot worse has certainly happened, so I’m not particularly bothered. I’m just not completely sure that I’ve remembered completely how to speak again. So I just thought I’d try and use you as guinea pigs.
Oh, what was this noxious poison they gave me, I hear you ask??
None other than bog standard, lowest dose, tested and tried, millions of people have taken it over the last 30 years and benefited, to the extent that being on this drug has become a cliché. . .
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. . . Prozac.
I have this little list to help me, because some/many days I find myself standing under the water for heaven knows how long and have to ask myself what I’m doing there.
Honestly, I can’t remember.
So first I try to remember how many things I have on my list. At the moment there are 4 major steps to having a shower.
sponge and soap
face cleanser
shampoo
conditioner
Because I repeat the list to myself every day, I seem to remember how to perform this essential self care task. But I have no lists or procedures for other daily life tasks.
making lunch
getting dressed
paying bills
feeding the cats
making tea/coffee
writing letters/emails
buying things from the shop
using public transport
organising a babysitter
taking tablets
social interaction
timekeeping
writing a blog entry
I know that each of these tasks can be broken down into little steps, like my shower list, but I haven’t really done that yet for everything. I’m used to intermittent cognitive issues being caused by MS, but I’m not quite used to them being a constant thing. Usually I’d just wait til things started to work a bit better in both my head and body and just allow myself to slip a bit and ask for some extra help as a one off thing, hibernate a bit. . . but this time it ain’t going away, and really I just need to get on with things.
Everyone has cognitive “blips” (“where did I leave my keys?” “what did I come upstairs for?”) andI have had those and sometimes, but these “blips” are different. they’re more frequent some times than at other times, and it can be caused either by nerve/myelin damage/inflammation, or medication side effects. So it can be progressive or only temporary, one never knows. But currently, and at least for the past six months, if not year, I really have to think about every little action. The things that I used to do without thinking.
making a cup of tea:
pick kettle up
walk to sink
put kettle under tap
turn on tap
*!stop when full!* (very important step also when pouring into the mug)
and so forth
I get on fairly well and I’m pretty good at keeping up appearances (a friend told me yesterday “well, you’d never know you’ve not been well!”), and I’m more likely to push myself than to give up. . .
. . . it’s just tiring, having to think all the time. And I leave so many things undone. It felt ‘normal’ when it was occasional or temporary. But I’ll be honest, it doesn’t feel ‘normal’ anymore. And to be honest, I am asking myself to do fewer and fewer things because of it.
Just thought I’d let you know. This is the only place I feel I am actually allowed to talk about it. I do talk about it, but then I feel bad when I do.
So, the clinic in my country who can perform the doppler scanning to find out if CCSVI is present opened their waiting list for people to try and book appointments at 12 pm, my time this afternoon.
It took me an hour and a half of page crashes (they were only accepting bookings through the website, not on the phone, because of the number of people trying to get through). But in the end, I managed to book a place on their waiting list. So later this year, I will at least know if I have this thing or not, and can start thinking about the possibility of treatment.
It seems hope isn’t quite as far away today as it was. Still more hurdles, but at least this is a step.
I thought Heather was joking when she said that today was Global CCSVI Day, but actually it is.
I guess because deep down, at least for me, it only ever remains the suggestion of hope. It only resides in that ethereal realm of imagination and supposition.
I guess deep down, when I confront my realities. . . I don’t really believe that the suggestion of hope could ever pass through the imaginary realm into a more solid and concrete place.
And it’s cruel to have that imagination when it is unable to cross over into the real. It is cruel to have seen a better place. . . and know you can’t go there. It’s leading me on. It’s not wanting to ever say “never” but deep down believing that “never” is true.
It’s seeing the better place in your head and having the gate shut on you in waking up that is the cruel thing. And then thinking once again “never say never”, but believing it. It’s the back and forth between definitely and maybe.
And then getting tired and thinking of something else instead.
As my friends, I would just like you to take a few little minutes and see this, please (the 2 vids together are only about 4 min.).
Because I want you to know that this is what I want. This person is not me, but this is what I want to happen to me. I watch a lot of these miracle before and after videos. . . and hope. Hope that someday I will be “Liberated” too. And I hope it will be before I am too old to really start again.
Ok, just watch. Please journey with me on this one.
If you have a few more minutes (than just 4) you can also watch the videos on my earlier post for the background, history and explanation of what this woman had done. This is a different Person w MS than the earlier entry about CCSVI.
This is a short video of some of this woman’s visible MS symptoms before she had vascular angioplasty.
This is a short video of the same woman demonstrating her capacity less than 24 hours after having vascular angioplasty (known in the MS community now as the “Liberation procedure”)
I wasn’t quite sure what, I wasn’t completely sure how, but it seemed that I had a thought that really I wanted to tell you about or that I thought you might want to know. . .
But, then I thought I’d take all those lessons from past experience that I keep talking about and actually use them. . .
well, I told myself that I wasn’t going to post about ‘me’ anymore.
I would talk about this and that and the other things, the medical community and issues rather than a medical ‘me’ or my experience. I could speak of parenting in general rather than ‘parent me’ and ‘child her’. I’d write about what I had for breakfast and how many trips I made to the shops today and I would revolutionise both this blog and this person into something more ‘normal’, more ‘acceptable’, and less difficult to handle for you my readers and my friends.
But I don’t think I know how to do that.
When it comes down to it, this is my blog. I’m not sure what to talk about if I don’t talk about ‘me’. I don’t really pay attention to what I eat for breakfast or my trips to the shops. What I do pay attention to, is how I feel about waking up in the morning or what happens to my eyes when I walk down the street to that shop and how that makes me feel on the whole. That’s really all I’ve ever known about, the relationship between feelings and the language to express that. I feel things and then try to find a way to convey that through words so those feelings don’t stay trapped.
But through doing so, I think that I have realised something.
I’ve realised that most people don’t do that. I’ve realised that that makes me a bit weird. I’ve realised that that makes you a bit uncomfortable.
I got an email from a friend recently trying to explain why it had been so long since I had heard from him. He explained to me that most people have normal lives and do normal things, they have cornflakes for breakfast and go to the shops and do that sort of thing (that’s not, obviously, verbatim, but you get the idea). He didn’t say it specifically, but I felt that my honesty in the way I write (both in letters and in this blog, for I have always really only ever seen this blog as a letter, to you, whoever) had resulted in my friend feeling under a pressure not to write about his everyday things, as my life has been, particularly over the last few years, so categorically unordinary. And I felt bad. I am interested in everyday things if they’re important to people and their everyday. But I am aware that I write too much in the first person. . . maybe because it’s the only person I’ve ever really known. . . at all.
So I don’t know where this leaves me, or this blog. I don’t know what you want to read from me anymore. I try to keep my ramblings down to “what I had for breakfast. . . ”
. . . but I just can’t make myself care about that enough to tell you about it.
I think about my veins, jugular veins in particular. And I think and dream about Poland, Italy, Buffalo NY and hopefully soon Glasgow and London.
A few months ago I finally started to remember the order that the letters went in, and even more recently I started to remember the full name of the newly discovered condition that statistics would seem to say that I probably have and is probably able to be treated… except that not enough is known for all the Big Cheeses who control our medical destinies to be happy about it.
Chronic Cerebrospinal Venous Insufficiency — CCSVI
I think about angioplasty and stents and warnings but also about the evidence so far and getting a life back, and the people who have done it and how I can’t have it, at least not yet.
I think about people with MS and their stories. I read their blogs, their tweets, and watch their YouTube videos. I see people walk and see and feel again, and I start to hope. For the first time I start to hope, until I remember that no one is going to help me to do something new and expensive and unproven however low risk it is and however many people have gone ahead and done it and started to get their lives back.
In the country where I now live, we are even more scared and cynical and doubtful about new discoveries than in my last country, which isn’t much better.
Time is brain, they say. And they’re right. It’s so hard to wait.
I get lonely without the company, but I also know I should learn to stand more solitary and independent. I’ve been wanting to make contact, to connect, to say anything. . . but it never seems important enough to immortalise it in typescript. The reality of “this too shall pass” has been so present in my mind, and even my body, lately that it simply hasn’t felt worth sculpting something concrete from my words to pin down what I know is only passing.
But the thoughts are there. The feelings are there. The guilt, for not having taken care of my friendships better in the midst of my own crises, is there.
And so, tonight, I remind myself of where I have been, the places I have travelled through and the people who have been important to me. and it seems like someone else, not me, who has done and thought these things. I remind myself of where I was nearly a year ago, and it feels like someone else’s story, not like my life.
this too shall pass.
Am I that inconsistent? Am I that unreliable, unpredictable, indeterminate, indecisive, scatty, changeable, flighty? Have I changed that much, and why, in that case, do some agree that I am all of those things and some say I am exactly the same as ever I was?
A year ago, I needed to go back there. . . But today, I’m hoping I don’t have to. . . again.
Today has been a bit rough. Had to take a “tiny red tablet” break for a few days for various reasons, and now I’ve got that old fist lodged in my chest again that feels like someone is trying to tear my lungs apart. I have tons of thoughts fighting for their way out of the window in my head trying to beat each other to the keyboard to be the first to get onto the screen. But I can’t cope with their arguing, so I’m simply going to ignore them and hope they go away.
Went to Big City today. That’s where the darkroom I use is. It’s about an hour on the train. Today was the first time I actually remembered my iPod, so I got to shut out all the noisy people in the carriage around me.
I’m a lyrics person, I’m a music person, I’m a voice person. . . subsequently, that makes me a Peter Gabriel person.
There’s just something about that guy that makes me want to weep.
I don’t, I never do anymore, but it makes me want to all the same. Today I wanted to, that’s not a bad thing. Perhaps it’s that I find an intensity in the music, that voice, mostly that voice, that although I find the same in myself I can’t allow myself to open my mouth and express it. Or at least I have never had the chance, never allowed myself the chance, have never had the complete lack of inhibition (always halfway but always just this side of decorum), have always been too bound by the convention that I try so hard to stand up in the face of, but never quite succeed enough to get a full acceptance from the world that that’s just who I am. . . because I’m not.
I just want to be.
Instead of seeing my intensities as an acceptable eccentricity (because the friends of an eccentric always seem to find a way of accepting them, but the friends of an oddity always seem to find a way of accepting them “in spite of”), I always get the feeling that the world only sees my intensities as inappropriate and uncomfortable.
To keep in silence I resigned
My friends would think I was a nut
Turning water into wine
Open doors would soon be shut
So I went from day to day
Tho’ my life was in a rut
“Till I thought of what I’d say
Which connection I should cut
I was feeling part of the scenery
I walked right out of the machinery
My heart going boom boom boom
“Hey” he said “Grab your things
I’ve come to take you home.”
Nice bit of lateral thinking from my daughter aged 3 1/2. Yesterday in her dance class as they were playing that game (not to music) where the leader calls out ‘port’ and the children run one way, ‘starboard’ and they run the other, ‘scrub the deck’ and they get down and pretend to do so, ‘captain’s on deck’ and they salute, the leader added in ” now, when I say ‘crowsnest’ you’re going to have to take both feet off the ground at the same time. Now how are you going to do that?” Several children suggested jumping in the air, another said to sit on mummy’s lap and it seemed that they couldn’t think of anything else. Then my little Flower Child breaks away from the group (a frequent “I’ve lost concentration and am going to do my own thing” tactic). But she runs to the back wall and climbs up on the bench, puts her hands in the air and shouts “up here!!”.
And yes, there from on top of the bench, her feet were indeed, not on the ground.
This is as much, no it’s more, a ‘check in’ and evaluation of/for/with myself as it is an update for you. But it’s a nice thing to have friends along on the journey. No, let me rephrase that. I need to have a few friends along on the journey. I can’t do this (‘this’ being just about anything) alone. I may be making more of an effort at exploring Solitude (and I am, I’m trying), but that’s not to the exclusion of others.
This morning I peer into my big yellow sharps container with a sense of accomplishment as I can no longer count how many needles are in there. The neat glass syringes are piled on top of each other now. It’s going fairly well. The pain varies from injection site to injection site (thighs and arms are OWWWW, but stomach is more of a dull ache) and it subsides fairly quickly (in about 10-20 minutes, unless it’s a nasty one). If I could, I’d use the stomach sites every day, but I think I’d develop a bit of a body image problem in no time at all with the increased risk of lipoatrophy and the welts and scar tissue. So I’ll keep rotating sites, and try the save the painful ones for the nights I have a bit more time and energy. The preparation of the auto injector, syringe, and injection site takes about 20-30 minutes, but I’m told that will reduce as my routine gets better. I do still kind of resent it for eating into my evenings.
The problem that I’ve always had with needles has greatly subsided with using the auto injector, though I’m not quite able to manually inject yet, though I have done it in the past. So, as this treatment does not increase anxiety as a side effect, like the last injectable I was on last year, I’m not doing too badly. I may come back and delve a bit further into the topic of ‘anxiety’ later, but today I’m in a focused practical mode, so it will have to wait.
Dear self,
Just because you are doing fairly well and better than you have been in many years, please remember that this does not make you invincible. Just because you haven’t had a panic attack since July last year, it does not mean that it is no longer possible. A word of advice, if in the future, you happen to notice that a bus is overly crowded, next time it might be an idea to just be patient and wait for another one to come by. Perhaps find a way with dealing with people who think you are unreasonable, I doubt that will change. Well done for stopping to close your eyes and breathe even though you were in the middle of a busy street, and people were probably staring at you.
Don’t worry, it was just a stumble, not a fall. Just wanted to say, I’m looking out for you.
love,
self
It’s amazing how when the penny drops and we realise that her behaviour is stemming from fear and abject terror at the prospect of losing someone/everything again (as she did when she was only 18 mo old), how much easier it is to bear that behaviour from her, how much easier it is to keep cool. It’s frustrating feeling so thick sometimes and thinking back on all the times I have lost my temper with her, if I could just remember, if I could just hold on to the fact that in all of her willfulness, in all of her stubborn, selfish, sometimes seemingly nasty outbursts, that she is just a scared little girl who needs me to stay calm and reliable, more than anything.
And that I love her more than she could ever imagine.
Flower and I didn’t have the easiest of times last week. So many of the old behaviours and rejections came rushing back to test my still very new found and a bit shaky stability.
A conversation we had, several times last week:
Flower: I’m scared of you mummy.
me: What was that?
Flower: I’m scared of you mummy.
me: oh! Why are you scared of me, Flower?
Flower: Because I love you.
me: What??
Flower: Because I love you.
ouch.
The first time she said it, I thought it could just have been a confused mush of words (she’s very good at confused mushes of words and concepts that don’t go together so well), but after several times, and the context around when she said it, I am certain she knew exactly what she meant. Even if she could not completely understand it.
Today it doesn’t feel like Solitude. In the sense that Solitude should (and does) have a fullness and wonder to it, in the way I can/should/try to relate to the world and those around me. But today Things don’t seem abundant and the wonder of all that is around me, esacpes me.
Today is the other end of the spectrum. Today, and so early already, I just feel lonely. And a bit raw and sensitive. I’m ok, I’m fine, I’m not depressed, it’s no big deal. And I really don’t feel like grumbling, so don’t worry about me. But I could use some simple cheer. I’ve not been very good over the last few years with keeping track of things that just make me happy and of simple pleasures. I’ve never found many simple pick me ups, so I’m not sure how to lift my mood when it’s just grey. Not black, not immovable, just grey and muddy and heavy.
And I think today, I just need to shed some weight. I’m just never sure how.
I’ve not studied these poems, the Sonnets to Orpheus. Not in any official way, I have just read them. And I have no literary criticism of worth (Rilke didn’t believe in the worth of literary criticism anyway), or at least I have none that would be wholly approved of by the academics. I just know when an image appeals to me. And these images appeal to me. The particular things that strike a chord with me in this particular poem are the first stanza and the first sentence of the final stanza.
Sonnets to Orpheus Part 2, XII by Rainer Maria Rilke
Want the change. Be inspired by the flame
where everything shines as it disappears.
The artist, when sketching, loves nothing so much
as the curve of the body as it turns away.
What locks itself in sameness has congealed.
Is it safer to be gray and numb?
What turns hard becomes rigid
and is easily shattered.
Pour yourself out like a fountain.
Flow into the knowledge that what you are seeking
finishes often at the start, and, with ending, begins.
Every happiness is the child of a separation
it did not think it could survive. And Daphne, becoming a laurel,
dares you to become the wind.
Do you know the story of Orpheus? At least skim through the link if you don’t (don’t bother looking it up on wikipedia, it’s too cold, academic and detached) and try to imagine the utter despair of winning back your love, your life, from the grip of Hades then losing everything in an instant through the accident of your own impatient desires, because you couldn’t wait.
There is much more than a lesson in romance here. I suppose it applies to all the passions of our lives. We try too hard, we can’t wait, we grasp . . . and we lose.
The first stanza is full of the depth of loss. But within that an urging to find some kind of beauty and inspiration through it.
The artist, when sketching, loves nothing so much
as the curve of the body as it turns away.
“as it turns away.”
Then in the last verse with:
Every happiness is the child of a separation
it did not think it could survive.
Is this a line of hope in the midst of utter tragedy?
“Want the change.”
“What locks itself in sameness has congealed.”
“Flow into the knowledge that what you are seeking
finishes often at the start, and, with ending, begins.”
So now I have a new companion and a constant friend.
Solitude.
My companion is not yet often an easy one, nor one that I have always wanted or desired to be with, but I am told that the relationship will be worthwhile, that it will be something rewarded if worked at. And if I learn to accept my friend, that I will find richness in the world and the life around me.
Solitude.
Solitude is now to be my companion, not my loneliness, which should be displaced in time. I am told that Solitude is not an absence of friendship, but the very core of the abundance of Things. I think I did accept it once. . . but as I have said, I have forgotten and need to be reminded how.
I have returned to the Old Places (those words, those thoughts that manifesto that I told you about) that I left and forsook so long ago. I returned to to an ideal, an essence, an emotion to look for my Solitude, to see if they could still hold any affinity for me. And I see it; those sparks of life, of love, of creativity, of abundance; I do. . . but only yet for a moment here, or a reverie there.
How is it, that we learn things, yet so easily forget? How is it that something becomes a part of us, how we think, how we grow, what we believe, what we feel, how we live. . . and yet, we forget? Does it happen at the point of some trauma, that we throw out all of that which has gone before? Or is it simply carelessness, the dropping of our manifesto into the crowds and busyness of daily life?
And am I just assuming that it happens to more than just myself? Is this collective “we” accurate, or is it just me who is the forgetful one?
Recently I saw that an old friend had posted a quote, something written by Rilke, and something in me leaped. “You know Rilke!” I said to him, excited to find that my old friend shared some kind of sensibility of mine.
“Yes,” he replied, “You were the one who introduced me to him.”
Oh. I had forgotten. So many years ago. How could I have forgotten? There was a time when I was practically evangelistic about the German language poet/author. I carried a pocket sized copy of Letters to a Young Poet with me everywhere like a tract or a Bible for several years. I discovered his Letters first (where anyone should start with Rilke) and reading them felt like the first time anyone had ever truly understood me. For the first time, someone was telling me what to do, how to live, in a way that seemed strangely comforting, helpful and relevant. (Does it reflect badly on me that that was something I felt that I could gain from a dead Bohemian poet and not from the Church or from my own parents?)
I moved on from his Letters to his other (dense, but beautiful) prose, then his poetry (both certainly a development in the relationship), and even though I have to admit to struggling through the density of reading German in English translation (and in various levels of success of the translations), for the first time I felt that I had encountered another human being who felt things quite like I did, as strongly, as intensely, a bit of an alien in this world, and who struggled through his life because of it.
It felt like being understood.
The encouragement, was that he always said that life was worth it. Difficulties, and particularly the difficulty of solitude (which at the time I felt that I knew so well), were to be sought out instead of avoided. There was something I could accept in that. I heard him say:
“It is good to be solitary, for solitude is difficult; that something is difficult must be a reason the more for us to do it.”
and I took comfort. I was told:
“The purpose of life is to be defeated by greater and greater things”
and I believed him enough to get onto an airplane and leave my country and look for life. In all that confused me about my life I heard:
“Be patient toward all that is unsolved in your heart and try to love the questions themselves. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions”
and I no longer cared for security. In those days, I lived, I mean I really lived. Because someone who felt and failed and hurt like I did told me that it was still worth it.
Any easiness in life was worth risking, for the attempt at something better. Life was worth living at all, because of its wealth and intensity. But I’ve forgotten. My fear and pains smothered that hope and joy, my failures crawled on top of me and wrenched the manifesto out of my hands.
Like Leonard said, “We’ve got to remind them how good it is.” Wouldn’t it be nice, to try to remember again? Difficult. . . but perhaps worth it.
Leonard’s story is a true one. In the years between 1917 and 1928 there was a worldwide epidemic of Encephalitis Lethargica (EL) which left patients in a seemingly catatonic state. (Warning: If there is anyone who has not seen or does not know the story of Oliver Sacks and the EL patients as told in the movie and book Awakenings, this post will contain plot spoilers.) In the summer of 1969 neurologist and author Oliver Sacks (renamed Dr. Sayer in the movie, as suggested by Sacks himself) was the wizard who experimented with the brand new, in ’69, Parkinson’s drug Levadopa (L-Dopa).
And they woke up.
People like Leonard who had been asleep for 30 years since childhood or young adulthood — they-woke-up!
Can you begin to grasp the enormity of that? To fall asleep as a child and wake up in your 40s? What the world must have been to you after all that you had lost! What emotions would you have to deal with, and would you be ecstatic to be alive or angry for the life you had lost? What about the family you had left behind in your illness, then regained as a different person? What about the griefs, the loved ones who died, after you had fallen asleep, to wake up and find out they were gone, but you were here? What about the new technologies and culture which you didn’t see evolve slowly, but were introduced to in a flash? What about discovering life in a very post pubescent body having never been old enough perhaps to even fancy someone before? Well, Leonard and the other EL patients treated by Dr. Sayer/Sacks went through all of these confusions.
What does that have to do with my own story? Anything at all? Maybe.
You see, those little red tablets The Wizard prescribed for me, although they weren’t L-Dopa, are used for the same thing, to increase dopamine in the brain. The two drugs are sometimes used in combination with each other for Parkinson’s patients. Dopamine is one of the three neurotransmitters thought to play a role in clinical depression and it is the neurotransmitter responsible for pleasure and motivation. Dopamine has to do with energy and rewards and is implicated in the ability to experience love. I have read that we are all dopamine addicts.
I don’t want to describe the life that I had wanted to replace, that’s another story and not for here, but if you can imagine a life with absolutely no motivation and no pleasure, no reward and therefore no will, though it doesn’t constitute catatonia, it’s not really something that you would prize. The difference within 5 days of taking a dopamine agonist was not only startling, it was a bit scary too. As the EL patients, I was both ecstatic to be alive and angry for the life I had lost. And I was now awake enough to be aware of how much I had lost. I thought I had been before. But there was more. More I hadn’t seen before. And having played with my brain chemicals it has taken me a little while to find my feet again when it comes to relating to other people. I still don’t feel that I’m getting that part right. I can’t seem to read people, situations, emotions quite like I used to. I hope I get used to it.
My general pessimism hasn’t completely gone, either. That’s developmental and too entrenched. So the thought can’t help occurring that if it’s too good to be true it probably is.
Sadly, Leonard’s story does not have a happy ending. He began to develop a tolerance to L-Dopa, as all the EL patients did. His condition began to deteriorate until he reentered a catatonic state. And his mother had to watch. She lost him again. And he lost everything. Again.
I’ve been traveling this road with MS and depression for more years now than I haven’t, and I am aware of the instability of things. I am aware that everything changes, life is gained and life is quickly lost. I don’t know what will happen next in my story. I don’t know if I will continue to find a balance (it hasn’t been very long like I now am, anyway). I don’t know and sometimes I get scared. Will I simply “forget how good it is” “what it is to be alive”? I will probably “need to be reminded about what [I] have and what [I] could lose.”
And I’d like to find a way, with all of my gains and my losses, with all of my joys and my griefs, with my new life and the lives that I have known to make them one life and not many. To make them an integrated me. Not one that bounces back and forth between this and that.
And you, my friends, help. You do. You are able to remind me how good it is. Because if it starts going back to my old life again, like it did for Leonard, I don’t know what I’ll do.
Don’t reject me today, dear reader. Please. At least wait ’til tomorrow.
You see, I put myself out on a limb last night, and today I’m feeling just a little bit vulnerable. I don’t know why I did it, I’m not 23 anymore. I haven’t been for quite a long time. And of course I felt it.
So tomorrow I’ll go back to being your storyteller. But today, I plan to lie low and lick my wounds.
So I walked away from the pharmacy clutching my little red pills, dubious that something so simple could metamorphose the ruptured life that I had so carefully placed on my shelf for safe keeping, storage and dust collection into a new jumping, singing and dancing life that would get up, hop down and make itself known.
Day 1 — I knew it wouldn’t work. What do I do now?
Day 2 — hmm. . . then again. . .
Day 5 — this isn’t my life! OHMYGOSH I have a new life!!!
Each day, I seemed to gain a new feature. At first I was ecstatic! All my old life ever did since it got dropped was sit on that shelf and get dusty. My old life was a constant disappointment to myself and to others, never living up to the manufacturer’s grand claims of what it would be able to do. But this new thing. . . this new person I seemed to be becoming. . . well, it just worked. It got up and moved almost like it was supposed to. And oh, the freedom of leaving the house! Oh, the places beyond my front step! I was shaky on my new legs, but learning to walk quite quickly.
And I was loving it!
But by Day 10, the post transplant confusion had begun to set in. Waking up one day and finding that you’re in a different body after having spent so long in the old one creates a bit of whiplash. Everything happened so quickly. Everything had changed, in such a short time, but the memory was still in tact. I still had the old memories and the old experiences, but they no longer fit the new person and I didn’t know what to do with them.
I began to suspect that I might have noticed a few unwanted aspects to this new life, but decided to ignore them. I was probably just overreacting, and besides, it was better to have a working and fully functional life with a few unwanted characteristics than it was to simply be broken. . .
About a month ago I decided that I didn’t like my life and I didn’t want it anymore. So I went to my doctor and asked if I could have a new one transplanted in the place of my existing one.
We discussed all the different lives that medical science could make available to me, and having done my research, I knew which one I wanted to try.
But my doctor said, no, they had never transplanted that kind of life before and wasn’t confident enough to try it. But I could have this other one, over here.
So thinking that it was my only option to get rid of the life that I had, I agreed. Doctor wrote me a prescription and said that my new life should start to become evident in about 2 to 4 weeks.
Dubious, but obedient, I took the script to the pharmacy, got the little tablets and took them home. Still dubious, I wanted to look up what the features of my new life would be before I committed to it, and. . .
. . . NO!!! I don’t want that kind of life either!!! So back I went to my doctor, and asked once again for the original type of life that I wanted to transplant mine for. Doctor’s head shook, and I was sent to the transplant consultant,
The Wizard of Oz!
who would give me further recommendations and take responsibility for the proceedure.
So off I travelled down the Yellow brick road, wondering if I was truly going to be seeing a wise and grey bearded, old man who would fix my life for me, or simply a short little coward behind a curtain who was pulling levers and shooting flames up to make himself look bigger.
Again, we talked about the various lives that I could possibly trade my failing one for, decided that whether he was wise or not, I would have to take his advice as the only way I could trade the old for the new, so I said yes.
The wise and/or presumptuous wizard wrote his recommendations to my doctor, who sent me off to get more little pills, and told me that he would send some needles in a few weeks time to make the transplant permanent. Pills would perform the transplant, syringes would prevent rejection. All of these things, I was told, would start to transform my old unwanted life into a shiny new one.
A lot of people believe there is “a way” to do things.
A lot of people are afraid that they haven’t found that “way” and are afraid that something bad will happen if they have done something “wrong”.
A lot of people are afraid to follow their own instincts and so look to others to “show them the way”, and eventually feel trapped between choices that they are not happy making and a feeling of helplessness in the face of some fatalistic dictum. It causes an awful lot of people an awful lot of anxiety.
Of course, I’m talking about me here and assuming it applies more widely. I write that from my own experience, not really from observation. For, I have most frequently been one of those people. In fact, I believe that I have probably most often been [allowed myself to be] subject to the feeling that my role on this planet was was simply to carry out someone else’s orders, not to make my own. So far I have always been the vassal, not the master. I think I was always waiting for that mythical time when having paid my dues, that I would get my reward and gain some kind of power, and suddenly be respected and listened to.
But to be quite honest with you, I’m not really feeling like waiting patiently for something that probably isn’t going to happen naturally in response to any kind of dutifulness on my part. I’m not in that kind of mood at the moment. I feel more like throwing out the rule book because I’m starting to realise that there was never an agreed contractual end to my serfdom. So I’m going to institute my own little personal peasant’s revolt, and see how it goes in maybe doing things my own way for a little bit.
One of the most helpful things someone said to me recently (besides all of your lovely and supportive comments here, that is. thank you!) was to remember that this is all just “trial and error”. The topic of discussion was MS, living with MS, treatments for MS, and “the way” that you are maybe “supposed” to do things. He just said “remember, no one actually knows anything for definite about this bloody illness anyway, or about most of the drugs used to treat it for that matter. You just have to try things, come up with your own thoughts and adjust accordingly.”
There was a lot of freedom in that idea. If I “do it wrong”, what does it actually matter anyway?
Realise that I am aware of how medicalised I have become in a such a short time frame, and also that I am aware of how boring that actually is. But being aware of my past history of bouncing between espousing and rejecting the medical as a part of me, makes me inclined to allow it, for now, for a time.
But only because I know I won’t be here for good. So if you’re willing to put up with and indulge me for a little bit while I find my bearings, then I may just be able to relax about the whole circus. And then will try to get back to not needing to talk about it so much, and perhaps even try to be interesting.
Much less painful than last night (I’m certain I must have jabbed through a nerve to get that much pain. Everyone I speak to on the stuff says it hurts, but not to that extent!). But then the reduced pain tonight probably has something to do with me reading the auto injector wrong and thinking that the syringe was empty and removing the needle before it was done discharging its contents.
There’s enough pain and redness there presently, however, to reassure me that a fair amount has reached my system even though a fair amount was wasted.
I didn’t do it quite properly, but I did it. And after last night, that’s kind of a big deal.
I wrote last night in anticipation and nerves of what was about to come. This morning I have a known quantity, and am feeling very disheartened about it.
I can deal with many things. But when it comes to pain, honest to goodness pain, I’m a wimp. And the disheartening comes from the feeling of having to live out a kind of prison sentence, a set punishment (for what? what have I done?) of an indefinite length. I am going to have to do this every day, perhaps for many, many years to come.
I feel sad and immature like a child yelling at their teacher who has put them in the corner for something they didn’t do, “It’s not FAIR!”
After 14 years I would have hoped that I’d have come further along the road to accepting my lot than I have done, and am ashamed at my childishness.
There are no more questions to ask or decisions to make about it, it’s no longer a question of ‘do I or don’t I’, or of making the right or wrong choice, no more worry, no more denial. It’s a done deal. Despite all fear, regardless of positive or negative results, it is going to happen. It is meant to become as much a part of my everyday life as eating, and to be done with just as little thought. Just something to do and get on with.
It feels a bit like a turning point to be back here. I’ve demonised and avoided the drugs as long as possible. And now I just need to find a way to accept it.
I’ve tried to collect together all of the things which I’ve known myself by over the years, but it just doesn’t seem to make a coherent whole. It doesn’t make any sense. And then I try to collect together all of the things that have influenced or even directly caused those things which I have known myself by and I realise that for a large percentage of my life, I have come up with some excuse or other for “not being myself today/this week/month/year/decade/etc”. And if percentage wise I’m spending more time making excuses than actually ‘being myself’, then how can I really claim that the me that I am less of the time is the ‘real’ me?
For a large percentage of the time, I have always felt that my life has taken ‘time outs’ and I, the ‘real me’, was just sitting in waiting for whatever influencing factor that was masking me to go away, or for me to finally achieve the back to the real me’ state.
But I must have been mistaken. Because the mask never comes off. It only seems to change. It changes from day to day and year by year. And saying that makes it sound like it really must just be that ‘changing thing’ that we’re all supposed to do as we go through life anyway, but for some reason it doesn’t quite feel like that. It doesn’t quite feel authentic. It doesn’t feel like a natural evolution.
My striving has always been to be my most authentic and honest self, like some mythical, unblemished, Platonic Form or something, to all and particularly to me. However, whereas I used to think I knew who or what that authentic Form was and what she liked and how she thought and how she acted, I’m just not so sure anymore. When do the blemishes become no longer something to sweep away and make excuse for, but become the thing itself? What if all my blemishes aren’t something added to cover up me, but are actually now me?
If you start with a table and break off one of it’s legs, you can probably fix it back on, with the right glue and nails. No harm done in the end, it’s still a table. But once you start to take a chisel to the table and gouge out some big gaping holes, it starts to become something a bit different. And you no longer wait for it to be fixed back to its ideal state, you have to accept that it is now either a sculpture or junk, and not useful as a table any longer.
And lately I’m starting to feel a bit like that chiseled table, starting to accept that there is no ideal Form for me to become anymore. And I’m wondering how much I get to control what the finished sculpture of me will look like. Or do I simply call it junk, throw it all out and start from scratch? But if that were the case, what do I do with all the stuff left over, from everything that has gone before, the thought patterns, the beliefs, the dis/likes, the behaviours?
I think in the end I just have to keep chiseling. But without my Platonic Form to model myself after, how do I know what my eventual goal is anymore?
Thank you for your message. I will endeavor to reply just as soon as I take a deep breath, count to 10 and stop wanting to grab you by the shoulders and shake you.
much love,
burntsienna
I find little that’s more enjoyable to fill an evening on my own with than putting on my pajamas, sitting with my cat, sipping a glass of red wine and watching the Andy Williams Show reruns on iPlayer.
Ok, so suddenly, almost in an instant I have more motivation than I’ve had since high school, and more energy than I’ve had since emigrating and have kept it up for over a week. FANtastic!
. . . but unfortunately, as I was like when I was an energetic, motivated high schooler, I seem to lack the focus and ability to usefully apply myself to accomplish anything effective. It’s a bit more like I’m wearing a caffeine patch than it is that I am a highly successful and healthy woman.
Oh well, one thing at a time, bird by bird, baby steps to the goal post, etc, whatever…
So I slowly, gently, gradually peak my head out from behind the the wide, old oak tree that I’ve been trying to hide behind (it is all there, if you look for it) and glance across the way to the little pool of water in the distance where the others are splashing and playing.
Maybe if I just creep over and dip my little toe in and see if it’s too cold and whether or not jumping right in would hurt too much or shock my system into a regression?
Have been visiting a well known MS forum over the past few years, but not posting much. Occasionally, particularly upbeat and well meaning members post encouraging comments to the others. Tonight I read somebody’s post that said, basically:
Don’t let it get you, keep going! Don’t let it stop you from functioning everyday. Remember, it doesn’t control you, you control it!
Which is all well and good. . . except when it does and you don’t.
But I’m not completely certain about the level of actual communication that we were able to achieve.
I had made decisions, presented my cases, then was offered other choices, then stuck to my decisions, then didn’t, then considered other options, was allowed only certain routes, fully allowed others, was looked at like I was insane (how I hate scrunched up faces), until I’ve traveled back and forth so much, that I’m not even sure what happened in the end and what will come of it.
But I’m not very hopeful. Whatever it was that happened.
Words are sticking in my fingers this evening. And a lump forms out of the weight of everything that I am trying to carry on my own, rising from the middle of my chest to my throat. . . and stops there. Stifling.
These are the images that I am told can make great poetry, great photographs, great music. But I am not enough of an artist to bring forth any riches there.
So I sit and stare at the blank page, writing wordless poetry. Only feeling, not articulating, the verse pouring out of a locked up chamber, too full to be still, yet silent, by consequence and necessity.
Tonight I’m thinking about going back on my word. I thought about it last night, and for several nights before that. I’ve been thinking about it for quite some time now, and I hate that. I think about it, then can’t face it, then can’t face anything else, then can’t face it again. I’m thinking about breaking my word about going someplace I vowed never to go again. And how do I live with myself if I do? I’ve always seen myself as someone who keeps her word, who learns from her mistakes. How do I expect any of you to live with me if I sell out? How when I’ve learned that I will regret it, at least eventually, but what else can I do when I haven’t learned a better way to allow me to avoid it?
I guess if I do, then I won’t have to live with myself anymore. . . because I won’t quite be me anymore either. I’ll be something a bit different, perhaps a bit less human, something a bit flatter. But, as someone once told me, the last time I wrestled with this angel and/or demon, ‘Perhaps that’s just a sacrifice you’ll have to make.’ I guess it’s better than the alternative(s). (??)
I’m not very good at self sacrifice, especially when it involves compromising my principles. I know you wouldn’t see it that way if I was able to tell you more, dear reader, but it feels that way to me, right now. It probably won’t after I do it. If I do do it.
Well, it’s a new year. And unlike my usual tendancy, I have not made much mark of it. In fact I have tried my hardest not to make too much mention of myself, not to be too visible. I figure that if in other years I have generally not tried to quell my natural extroversion, and other years have been stressful and difficult, then perhaps I should try something different this year and perhaps the year will go differently too.
Perhaps not. Everytime I try to wear this invisibility cloak, it ends up inadvertently slipping off. It’s very slippery. Or perhaps it just doesn’t fit too well.
On a practical note about this blog, you may have already noticed, that if you now approach this blog directly by entering it’s url, you will only see the two existing pages that have been posted (just not static on the front page until now) for many months now. However if you click on the link for an individual post, as listed on the wibsite.com homepage, you will be able to read it.
I know that my reasoning for doing things is usually only comprehensible to me, myself and I, so I won’t bother to try to explain.
It’s perhaps ironic that the subject that I have been chewing over in my head for awhile now (to speak or not to speak/the nature of talking and vulnerability) is beginning to “take voice” at the same time as my decision to give in and make an appointment with the speech therapist.
I lost my ability to speak once in an MS relapse. I mean that I lost the ability to control and use the muscles around my mouth and throat, not my will to. The only person who could understand what I was trying to say was my husband, and that took a little while. The sudden removal of my ability to communicate verbally with others left me a bit shell shocked and terribly frustrated and it left the others i tried to speak to simply stunned, sad and not knowing how to respond to me. I will always now have the possibility of problems with the muscles in this area as there is now scar tissue/inflammation in that area of my brain. (My current decision to refer myself back to the speech therapist is because of the number of times I find myself choking on my food and drink recently. Had a particularly frightening episode last night.)
But that’s not exactly what I’ve been thinking about on the subject of ‘talking’. I’m a pretty chatty girl, and in many ways, I wish I weren’t. I really wish I didn’t feel such a need to express what goes on in my head to people, mostly as I’m convinced that people don’t really want to know (which is perhaps why I blog it instead, if you didn’t want to know, you wouldn’t click! And besides, it keeps me quieter in ‘the real world’, therefore avoiding that whole “did I just offend you? What did I say wrong?” feeling that I’m so good at creating).
I wonder how I would adapt if I lost my ability to speak again, I rely on my words so.
I remember deciding to go to my weekly Bible study one week during that relapse, even though I knew I would not be able to contribute in any useful way. Unfortunately, that evening the study dissolved into argument and bad feeling around a particularly heated discussion on the Pauline teaching on women and I felt completely helpless. I watched my friends saying things that upset each other and upset me terribly and I felt completely helpless, both in my ability to express my thoughts/feelings and to wade my way through the murky waters. I felt out of control of my relationships in the midst of bad feelings, and I didn’t like it one bit!
I rely on my voice to ask questions, to discuss and to understand the people and the world around me. I rely on my voice to try and make other people understand me. Without my voice there would be a barrier between you and me.
Silence generally makes me uncomfortable, visible and vulnerable (although talking makes me feel pretty vulnerable too, so I guess I can’t win). I feel a perpetual need to fill the gaps when the conversation stops. I often feel a great responsibility to carry the conversation, to be interesting or funny or witty (which has been more difficult lately with my aforementioned cognitive issues). And I have an inordinate fear of being misunderstood, so I say as much as I can to explain myself, as I have learned over the years that words and actions that seem completely natural and normal to me, aren’t natural or normal to most everyone else in this New World. So I talk, perhaps more than most, to attempt to explain, excuse and exonerate myself, to prevent such possible misunderstandings (I am still floundering in my “two countries separated by a common language” cultural divide).
And besides all of that, I love conversation. I love connecting with other people and finding out about them and sharing something of myself, and I can just never figure out when that happens to be a welcome thing to others and when it happens to be annoying. I just don’t love being dissolute, obtuse and irksome.
I guess I feel if I’m uncomfortable in the silence, then whoever I am with must be uncomfortable too.
Apparently, that is not true. Apparently, there are people, who find silence a normal and ok thing. I guess I didn’t grow up that way. So I am trying to curb this need to speak. Apparently it’s not always polite, where I live now. I don’t like to annoy people and like Eliza Doolittle taking lessons in how to be “a lady”, perhaps I should try a bit harder not to say so much. Perhaps only speak when I am spoken to??
But on the flip side, and perhaps from a more positive perspective on the subject, isn’t silence between friends an indication of security and to be valued? Yes, I am certain that and a balance between the speaking and the silence is the ideal and to be sought after. This will come, perhaps slowly but surely as I learn to relax into my life more.
However, for now, the thought continues to occur to me that I have not been able to find that balance yet. The thought continues to occur to me that I had better work harder at not saying so much, for I would rather be heard through my silence than ignored through my words; I would rather be conspicuous by my absence than invisible by my ubiquity.
It was necessary for the sake of self preservation.
A brief and probably inaccurate summary might go something like this (inaccurate because my perception of what goes on around me and my ability to engage and communicate with other people, both personal and professional, is currently greatly hampered by cognitive problems caused by my MS):
me: I think the chest infection is back, the cough is worse, it keeps me awake at night, I’ve had it for about seven weeks now and when it starts I can’t breathe and I can’t stop coughing because my throat goes into spasm. I feel ill and tired and my throat hurts. Everything is a bit unpleasant and green.
he: When I saw you last week, you were looking a bit anxious, and today you seem a bit low and depressed. We really need to look at things as a whole, and perhaps consider a different kind of treatment.
me: Well, the other day, I was bringing my daughter for her injections, so of course I was a bit anxious. I don’t think I’m any more depressed than usual at the moment, and I absolutely refuse to go back on antidepressants!
he: Well, then we can look at other options.
me: I already have a therapist, since 2007, and am very happy with her. Can we get back to looking at my cough?
Ok, that’s not exactly how it went, except for the bit where I said that I wasn’t depressed and refused to go back on medication.
Well, the second part of that is true, so therefore I needed the first assertion to facilitate my refusal.
I just so often get the feeling that I am no longer seen to have any illness or bug or problem that isn’t directly connected to having MS or depression. And whereas I will be the first advocate of the wholistic “mind and body are intrinsically linked” approach to medicine, and ok, to be fair, his assessment of my mood was fairly accurate, but I would like to shake off the labels and expectations sometimes. Give me a chance. Ok, I might have a history of depression. . . but I’m sure I can have a simple bug too. I wish they would stop trying to shove pills down my throat!
And I have known them all already, known them all. . .
Have known the evenings, mornings, afternoons,
I have measured out my life with coffee spoons,
I know the voices dying with a dying fall
Beneath the music from a farther room.
So how should I presume?
And I have known the eyes already, known them all _
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawlling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?
And how should I presume?
You see, what Heather commented on that poem, although I know it was a bit tongue in cheek, is precisely what I’m talking about. A poem is, I feel, as much about the reader as it is about the writer, because all readings and meanings can be valid. I read it one way, she read it and, because she’s a different person with different things in her own head, she imediately thought of something different. (whether tongue in cheek or not, the image occured to her.)
I’ve been in so many discussions where people try to say “this is what this means” or “this is what the writer wanted you to think”, and I suppose just as all readers are different, all writers are different and I suppose some writers do want to “force your hand” and make you think and feel a specific thing by what they write. I suppose, if I’m honest, of course there’s a bit of that in what I write too. But the older I get, the more I try not to do that, and the more I try to just ‘let it be’ without forcing anyone to ‘get it’.
Because isn’t that what is ideal to be like with other people? Just ‘letting them be’ who they are, with all of their myriad meanings and interpretations, rather than forcing them to be and do and communicate just what we want from them?
In all of my recent fatigue and grumpiness, I left the Flower Child unsupervised by anyone but the television and the cats for a bit and slumped upstairs for a 10 minute break. Upon returning I found my little Flower sitting on the cream sofa with her Thomas the Tank Engine Advent calendar ripped into shreds and the plastic tray of chocolates that lies beneath the cardboard windows excavated and on her lap with a tall chair pulled in front of the high point that we had placed it.
Yes, it’s time to hibernate. Hibernate, eat, hide and drink mulled red wine. And besides, mulled wine doesn’t count towards your weekly allowed alcohol units. . . does it?
The fact that I have written so little as of late (both on and offline) is evidence to this fact (the hibernation, not the alcohol units). Long nights, evening skies at noon, cold rain and wet, rotting leaves. I find December difficult and Thanksgiving to Christmas a bit teary. And I guess also this year getting flu (probably Swine flu) which turned into chest infection (bronchitis/pneumonia – was actually a bit frightening at times. One gets attached to the act of breathing.), and not getting treated quickly enough hasn’t helped my usual “happy go lucky” general life attitude. (HEY! No heckling in the back there!)
I came down with it was the day after my vaccinations, so therefore I only assumed it was a side effect of the jabs and didn’t get checked until I really was in a bit of bother, which delayed my treatment for the infection.
I love antibiotics. No really, I do. I’ve been on them almost 10 times this year, and I always just feel safer once they’re in my system. I guess having a damaged immune system can be a bit scary at times, especially when you just can’t seem to fight something off. So an “immune system in a pill” is a great idea, I think (even taking into consideration my usual reaction against all things tablet shaped!).
My cat is ill, my mom is too far away, my husband is travelling, and my friends must all want to be hibernating as well.
I’m in a bit of a resentful, self pitying, “i love you, go away” slump just right now and I am sorry. I’m sorry both to you, Reader, and to those who must encounter me in the everyday, that I am a bit of a “little black rain cloud” at the moment. I am trying, I promise. I’ve just got my head down and mostly trying to direct as much of my tunnel vision and non existent energy as I can at the Flower Child, who has been such a star while mummy has been ill.
(aside: toddler tip for ill mums: create a small gentle set of “duvet games” with your little one. Hide and Seek works well. They will love hearing “where’s Flower gone?!” until you flip back the duvet and exclaim “There she is!”, and it allows you to be vaguely horizontal for as many minutes as you can squeeze out of it. Hide and seek with toy animals works well too. Also the game “the one who moves first looses” is a good one. Anyway, it worked for us.)
I can’t see how to shift this fatigue or cough or lassitude or blue mood for the foreseeable future, and Christmas has always been a tough time for me anyway (at least since coming here from there).
So please show some forbearance with me, and I’ll try to at least act vaguely positive. Maybe by next week, at least.
It’s days like today that make me feel like I perhaps should have never come here, and then I would never have to wrestle with the question of going back. Can one ever go back?
Days like today that are filled with memories, happy ones, important ones, trivial ones. It wasn’t always wonderful, but it always happened, and could be relied on. Days like today are filled with traditions, that perhaps mean nothing in and of themselves, but mean everything in the observation. Days like today used to be filled with people who are no more. People who weren’t always easy, but they were reliable, but now will never be again.
Memories and traditions and people. that I now feel that I have thrown away. That had been my intention, wasn’t it? Starting over can’t be done half heartedly.
And I didn’t do it half heartedly. It’s only that some days it just hurts a little more than others.
Happy Thanksgiving, my friends. Believe me, I am thankful.
The fact that I have remained so quiet recently is more evidence to the fact that there is too much to say, rather than too little. Don’t be fooled into thinking there’s nothing going on in this mental filing cabinet of mine. I am just trying to find the appropriate ways of saying them rather than to just say anything for the sake of it.
Also, so many blog entries are written mentally in my head at 3 in the morning while lying awake in bed and then refined at the keyboard later, after waking up. And as I have been too ill lately to allow any 3 am wakings (is that a good thing or a bad thing?), I have “pre-composed” less than usual.
I always liked the idea, as I have said before, of being a hermit. Of self reliance. Of being a wholly capable woman.
But that’s not how my world works. And I suspect yours doesn’t either. People need people. People need other people, and many times, we don’t even realise how much we may need the people who are already there, in our lives, until they are gone. There is a kind of loss, a gap, an emptiness when other people, even the “unimportant” or distant ones disappear out of their lives. As human beings we are built for homeostasis, and when something happens to change that stability in our lives, to any degree, particularly by subtraction (although addition can often throw us too), we can be left a bit in the lurch.
Often even when a minor cast member of our lives leaves by stage left just when we didn’t expect them to, right at a point that we hadn’t rehearsed, we become a bit flustered, like a director who can’t control his players and doesn’t know what to do.
When I was very little, my mother took me for my first haircut. About 12 or 13 years later, the same woman was still cutting both of our hair. Then, one day, we came to an appointment and were told that she was leaving her job to go back to college and retrain. She gave us a book entitled All I Really Need to Know I Learned in Kindergarten by Robert Fulghum. The Inscription she wrote inside the front cover was: “To ____ and ____. With special attention to pages 76 -78. Fondly, Donna. (the following quotes are taken from this)
Hair grows at the rate of about half an inch a month. . . That means that about eight feet of hair had been cut off my head and face in the last sixteen years by my barber. I hadn’t thought much about it until I called to make my usual appointment and found that my barber had left to go into building maintenance. What? How could he do this? It felt like a death in the family. There was so much more to our relationship than sartorial statistics. We started out as categories to each other: “barber” and “customer.” Then we became “redneck ignorant barber” and “pinko egghead minister.” Once a month we reviewed the world and our lives and explored our positions. We sparred over civil rights and Vietnam and a lot of elections. We became mirrors, confidants, confessors, therapists and companions in an odd sort of way.
February 2002, I was in a bit of a state. I was back in hospital again. I was back in physio and psycho therapies again. I was back on crutches and sometimes in a wheelchair again. Someone, probably against his better professional judgement but in an “I haven’t got anything else to offer you, so I’m going to make a personal suggestion” moment, suggested that I see this acupuncturist that he knew, and he handed me her card. I was in an “I’ll try anything once” kind of place and booked an appointment.
7 years and 8 months later I am still continuing to see her on a frequent and regular basis. In that time I can count the number of MS relapses that I have had on one hand (as opposed to nearly the same number per year before) and have not sat in a wheelchair since. And whereas any medical relationship really needs to stay that much more distant than that of hairdresser/customer, she has become a “mirror[], confidant[], confessor[], therapist[] and companion[] in an odd sort of way.” She has been there through ups and downs, griefs and joys of the last 7 years of my often soap operaish life. She has supported me through things that no one else knew about. She has always listened and never judged.
Last Monday she told me she was leaving to set up a practice in another town. Not an impossible distance away, and if I could travel, then I could continue to see her, but I wonder in all practicality if I will be able to do that. I haven’t completely decided what I will do yet, but I always knew that professional relationships can’t last forever. I have enough of them to know. But it always leaves me feeling just a little sad when I lose one. Then not knowing how to feel, because I’m self aware enough to acknowledge the feeling of loss, but mature enough to be sensible about keeping a healthy personal distance from my professionals.
My neurologist left in July and didn’t even tell me. (I’m talking about the good one who supported me in everything from my illness to bureaucratic nightmares to managing my daily ups and downs to being able to become a mum. Not the earlier bad neurologist who should have been struck off and lost his licence to practice if he hadn’t already been retired, for those who know the story.) When I found out, I was left sitting in his nurse’s office feeling crushed and open mouthed and wanting to say “B…b… but he didn’t even say good-bye!”
I was even a bit thrown when the nice lady with the spiky hair at the local pharmacy I always used to chat to seemed to have left that job. We get used to people, and at least I like a kind of homeostasis about my life. The reality is that nothing really ever stays the same.
Without realizing it we fill important places in each other’s lives. It’s that way with a minister and congregation. Or with the guy at the corner grocery, the mechanic at the local garage, the family doctor, teachers, neighbors, co-workers. Good people, who are always “there,” who can be relied upon in small, important ways. People who teach us, bless us, encourage us, support us uplift us in the dailiness of life. We never tell them. I don’t know why, but we don’t.
And of course we fill that role ourselves. There are those who depend of us, watch us, learn from us, take from us. And we never know. Don’t sell yourself short. You are more important than you think.
Well, the orange/yellow leaves have mostly blown off of the trees across the street now and the view out my window gets decidedly darker earlier and earlier in the day now. The view will hold considerably less interest very soon, so i turn to sounds instead. The purring cat beside me, the whir of a motor, the fireworks popping in the distance, my daughter laughing. Now is the time for hibernation, the time to burrow down and pull up the covers and clasp a mug of hot chocolate between my cold hands.
I used to be more hardened in this kind of weather and would simply wrap up and go outside anyway. But now, more things start to go wrong in my body at this time of year, not big things, just more things, and I’ve learned that any energy spent unnecessarily is energy wasted. I’m tired and fatigued, I do less, I enjoy less, I smile less. The seasons of my life are changing and I realise how unappreciative I have been of the time past that I shall have no more.
Of course along with that knowledge comes the knowledge that I am not appreciating my time here at the moment either, and that I will soon look back and wish I had spent it and cared for it better. It all seems such a hopeless cycle from this stage in the year. Unrelenting cold and dark and the endless replay of the same themes again and again. All I can do from this point in the year, is keep warm and wait for spring. I always do, and spring always comes. . . but it looks such a long way to there from the beginning of the winter.
Yes, I realise that winter is not really here until mid December, and now we are only beginning November. But in my chosenland, as I have said so often before, I feel as if I have been robbed of my seasons. They blend together for me now because of where I came from. What was once four, for me, is now only two. And both of them grey and rainy. Only one is colder. And I know you will find my viewpoint a bit unkind and unforgiving, but the truth of it is how I feel and how I see it. And I can’t be any more honest than that.
Because I remember younger days in the homeland over summertime nights, in green country fields with friends, lying on our backs, the fresh fragrance of hay and grasses in my nose, looking up at the stars in a pitch black sky and watching meteor showers, listening to crickets and watching fireflies. I remember winter snow days off from school, building snow forts and tobogganing down the steep hill behind the cemetery by my friend’s house, and trudging back up again, knee deep in crisp white snow that would last for days. I remember mountainsides hemming in the river valley, completely covered with autumn colored trees, a delicious quilted carpet of red and orange and yellow and brown. I remember the spring flowers, the sweet smell of lilacs most of all, and my mother’s crocus that would greet me by the front door in March and tell me that things were moving on and it was time.
Moving on was exciting to me then. And now I resist it, I push back and bolt the door to keep it out, along with the cold of a new season. I don’t look for new seasons now, in the trees and in my life both. And I can see myself sitting here wrapped in this warm fluffy blanket with this hot mug of chocolate for quite some time, and not noticing the crocuses when they reach out of the ground to point me where I am to go next. Maybe I missed them already?
The fireworks sound louder through my curtained window, and I realise that I left my attic window viewpoint too soon. . . It’s too late now to see them. By the time you hear the bang, the pretty sparks are gone.
So this morning I’m booked in for not just one flu jab, but two. The regular one plus the swine flu vaccination. And as of right now, I’m not sure I’m going to go through with the swine flu one today, as I’m on my own with the Flower Child all day today and tomorrow (husband is travelling with work), and from what I hear from all corners, my arm will be rendered pretty useless for awhile afterwords.
Three year olds and any immobility of the parent don’t go well together.
Oh yeah, plus my fear of injections doesn’t really help me make a dispassionate and practical decision.
I’ve been so eager to get vaccinated, particularly against swine flu, as everything I get knocks me for six, and could actually be a bit dangerous for me, with my ‘house of horrors immune system’ and all, and taking care of said three year old will be impossible if I get flu, which would immobilise me even more.
I’m very thankful really that I have the opportunity to get the vaccine, with my reaction to illness and all, but then there’s my reaction to drugs too. The question is weighing up do I risk delaying it (possibly a substantial time, knowing my surgery and their general approach to appointments) and therefore risking getting flu (there’s so much of it going round, as you may have heard) or going ahead and having it today, likely not just getting the sore unusable arm, but probably running my system down and being fatigued for the next three weeks until I can see my acupuncturist again? Remember, my body doesn’t like or react well to drugs, and I’ve been really run down lately anyway.
I didn’t know what I was doing or where I was going and I didn’t take anything with me, I just ended up under the bridge over the old creek bed behind the school and cried and didn’t know what to do.
I was probably about 10 or 11, and I failed miserably in my attempt to run. In fact, each time, still, I fail in my attempts to run.
But actually, I was certain I had it all worked out a long time ago, and my failure to carry it out has not put a stop to it once and for all.
I’ve known the answer of how to live without feeling sad or troubled or sorry or judged or hurt or worried or. . . well, add your favourite negative emotion.
I realised when I was about 9 that my friends could make me feel sad because they were mean and disloyal and that they said things behind my back and excluded me from things. I realised when I was about 12 that I was a sponge and I could feel the sad of others. Then I started realising that bad things happened to other people too and it made them sad and so I would feel sad because I didn’t want them to be sad and I was helpless to change it. When I was about 16, I thought that I finaly realised that all of that was probably more likely than not, my fault.
It took me a bit longer to realise that there was probably only one option left.
I was going to become a hermit.
Absolutely, that was the best way to live, I decided, being alone I could do and be whatever and whoever I wanted and no one would make me sad because no one else would be there. I wouldn’t be sad because of something they had done to me nor sad for them becasue of something somebody/something else had done to them. I would choose not to care about anybody, be nothing but a bit lump of introspection and no one else had to get involved.
When I ruled out a mountain cave in Tibet, I decided that I would never get married, never have any close friends, never talk to anyone, I would have an apartment full of cats and floor to ceiling books and would earn my living by being an anonymous author with some cryptic but vaguely mysterious and intriguing pseudonym. Me, myself, and I. . . and the cats. Yes, I had always known that running away was the answer.
And all that stays is dying, all that lives is getting out
Well, so much for my grand plan at life. I joined a church and settled in a community at 20, got married at 21 and now have a daughter at 33. And although I do have two cats and a lot of books, I have never been published under a false name (other than this blog) nor have I ever succeeded at locking myself away from other people. When it comes down to it, I’m a bit of a people addict.
So I have lots of people in my life and I get it wrong. . . and they get it wrong and other people get it wrong and all the things we can’t control or stop from happening so often make it wrong and I have spent a lot of time sad. Because in this world nothing seems to work the way it should, and like I’ve said before, my storybooks said that there would be happy endings galore. And there aren’t. There just aren’t. I don’t like that.
On top of that, people hurt other people and there’s nothing you can do about it. And even when you’re not hurting there is probably someone that you love, or at least care a lot about, hurting which invariably makes you sad because you really don’t want them to hurt and there’s nothing you can do about it. When it comes down to it we all just want to be happy and want everyone else to be happy and for fortune to smile and be fair and for all of our stories to have happy endings.
There’s a part of me that has given up the happy ending, but there’s a bigger part that keeps waiting for the surprise ending where everything is happycheesyok.
But it’s that first part of me that every so often still toys with running away. It’s toys with that mountain cave in Tibet or even better that cat and book filled apartment in another place or a busy buzzing city where no one would ever find me through all the people.
And all that stays is dying, all that lives is getting out
It’s the part of me that rails against the tragedy of life, the part that wakes up in the morning and says “No, No, NO!” to everything that isn’t happy, the part of me that is all too aware that as long as I have friends and family and care for anyone else, that I’m going to be unhappy, regardless. My personal sense of denial is big enough to fantasise about being able to run away and not accept this vision of life, but not big enough to ever actually do it.
So instead I try to keep to myself for awhile. I try to run away. Mentally far away while being bodily present. I try to step out of the bustle and the ties and the responsibilities and don my invisibility cloak, because in my woeful, selfish, vanity and pessimism I know no one will notice.
But every time I try to shut everyone out, I tend to get lonely. It never works, I go looking for where everyone has gone, then realise that it was probably me that shut them out, and I couldn’t really expect anyone to come looking for me, as I’m not 10 anymore. So, I always fail in my attempts to run, just like I did when I was 10. Then they looked for me. Now, I always end up looking for everyone else.
I’ll ply the fire with kindling now,
I’ll pull the blankets up to my chin
I’ll lock the vagrant winter out and bolt my wandering in…
When the sun turns traitor cold
and all the trees are shivering in a naked row
“awoke today and found the frost perched on the town
It hovered in a frozen sky, then it gobbled summer down
When the sun turns traitor cold
and all the trees are shivering in a naked row
I get the urge for going but I never seem to go
I get the urge for going
When the meadow grass is turning brown
Summertime is falling down and winter is closing in
Now the warriors of winter they gave a cold triumphant shout
And all that stays is dying, all that lives is getting out
See the geese in chevron flight flapping and a-racing on before the snow
They’ve got the urge for going, and they’ve got the wings so they can go
They get the urge for going
When the meadow grass is turning brown
Summertime is falling down and winter is closing in
I’ll ply the fire with kindling now, I’ll pull the blankets up to my chin
I’ll lock the vagrant winter out and bolt my wandering in
I’d like to call back summertime and have her stay for just another month or so
But she’s got the urge for going and I guess she’ll have to go
She gets the urge for going when the meadow grass is turning brown
And all her empire’s falling down”
And they were always quite clear that I might not be able to keep it. They said that I could only have it if I was fully aware that the something might change or even be taken away completely. And I agreed. I knew it was more important to have the other things that went along with that ‘something’ and to just enjoy the ‘something’ for as long as I could. The whole is more important than the part, and I know that.
But that was before I had the ‘something’, that part of the whole. That was before I fought to have it. That was before it became the most precious thing to me once it was mine, and now I don’t want to give it up. Now because I fight for it still and sometimes win, now because in my failure I don’t always value it as I should and when I don’t I regret it, now because I love seeing it more than anything else, now because I have a choice whether or not to put the effort into the fight to bring out my ‘thing’, I fear the day that I may not have it to bring out. It is the most beautiful thing I have ever seen and I love it.
I might not have to give it up, all this worry could be for nothing. And ‘they’ could warn me, ‘they’ could let me know if I have to. ‘They’ could tell me that I never have to worry or think about such loss again, or ‘they’ could help me prepare for it, quite easily ‘they’ could open the future, but ‘they’ won’t allow me to. ‘They’ tell me that it’s wrong, that I should just enjoy my ‘something’ for as long as I can and then deal with it if it happens. ‘They’ tell me it’s the principle. The future was never mine, nor is it any of ours, to know. Even if we could.
But I find myself like a dragon guarding my treasure and lashing out at anyone who threatens to take it away prematurely, even for a moment. I want to keep my ‘something’ and there is nothing I can do about it if I can’t. And I agreed to this, this contingency. I always said that it was better to have loved and lost than never to have loved at all. But I never knew.
I never knew what a wonderful, valuable, precious, intoxicating ‘thing’ a smile could be. Someone gave me a smile, only for a time, maybe, and it’s not the only thing that counts, and the value should be on the whole treasure, not just the gold trinket. I know it’s selfish to want to keep it when it might only have been a loan. But the truth is, I don’t know how to let it go. I didn’t expect to be so impractical.
Yesterday taking one of my frequent walks in the park with the Flower Child we turned down a wooded path near the stream. The light was beautiful and the leaves were organge and yellow and the sunlight was shining through the gaps in the trees and shimmering on the water. Suddenly Flower stops, gasps and clutches onto my leg.
Me: What’s wrong?
F.C.: I think I’m a bit scared.
Me: What are you scared of, Flower?
F.C.: There’s a Walrus.
Me: There’s a Walrus down the path??
F.C.: Yes. He’s down there.
Me: Well, let’s go find him and make friends with him!
F.C.: Oh! He’s up there now.
Me: In the trees?
F.C.: Yes. He’s autumn Walrus.
Me: Oh. What is his name?
F.C.: Hippo.
Me: Well, say hello to him.
F.C.: He’s walking again. He’s down there.
I couldn’t get her to say hello to Hippo and make friends, but If I had met him, I know I would have!
I generally try not to make a habit of taking my clothes off in public. But that’s what seems to have happened yesterday.
I mean, swimming was bad enough on Saturday (I said to some friends afterwords, “So why is it that if we dressed like this in any other public venue in any other context we would most definitely be deemed as, at least vaguely, offensive, but put a huge vat of water in the middle of us and push us in, and suddenly it’s ok??), and I at least try to forget when my skirt fell off during coffee time after church a few weeks ago, but bursting into tears in front of a large group of people from my church yesterday was not in my plan. It feels a bit like taking one’s clothes off to testify to something personal.
It was actually a beautiful communion service. And I suppose, I was the one who said:
I heard or was told somewhere along the line that there can be no true communication between two people, no real friendship, no love, familial or otherwise, no meaningful interaction with God, and no honesty without mutual vulnerability that stems from trust.
but in a way I’d made myself really very vulnerable over the last week, and I had been feeling it since then. When becoming vulnerable, I usually get scared of ending with the consequence of regret, loss, offense and error.
What I said that made me cry was very short, very simple and didn’t nearly express what I wanted to say (I still can’t seem to do that). I said, to a group of people from my church who contained some of my dearest friends, some slightly less close friends, some complete strangers, and some empty spaces where other people who could/should have been there but weren’t, “I lost my first family. But God brought me here and gave me you. You are my family.”
I didn’t get to say why that meant so much or how it happened, and I don’t know whether or not I feel better for saying it, but I was surprised by the response. Two friends approached to put their arms around me as I cried, a man I am not close to gave me a hug after the service, a woman I had never spoken to before told me that I was very brave, another friend kissed me on the forehead and served me the communion glass, and one of my oldest friends put a hand on my arm and said something I can’t quite remember except that it touched me.
I’ve made pretty clear that to me family is a bigger thing than the one that lives and moves inside the four walls we inhabit. It overwhelms me that after nearly 15 years, I still have this second family and they haven’t kicked me out yet. I need my family.
I found out this morning that my friend’s dad died.
When did my father die? I can’t remember anymore. Was it the 3rd or the 9th of October? I remember the year, at least, 1997. Twelve years ago, not quite 2 months after my wedding, which he couldn’t attend.
It’s all a blur. The wedding, the new house and the landlord’s cat, dad’s death, visas, immigration, the funeral and the three months living with my mother, sister and husband all together afterwards, the unemployment, the lost university course, the relapses, the wheelchair, the steroids and anti-depressants, the generous gift from an anonymous stranger so I could get afford my visa and return to my new home. It all seems so distant and like it happened to somebody else. And the strongest memory of the day that he died is is not of the phone call but of our friends M and J buying us fish and chips so we didn’t have to cook.
I think he had already died to me, when his brain became too damaged to know anyone, remember or understand anything. He wouldn’t have known if I had managed to fly back before he died. I tried, but I didn’t make it. And he wouldn’t have known. The last time I had seen him was at the airport nearly a year before when I had to turn my back and walk away from him, wondering if that was the last time. I hardly knew how soon.
I walked myself down the aisle when I married. He wasn’t there, he was too ill, though I barely knew how ill. I had always said that it was either both my parents or me alone. So as it was, it was me alone, sobbing to Pachelbel’s Canon, part because at that stage of my new illness I was overwhelmed to be walking at all, and part because of an immigrant’s overwhelming experience of the simultaneous experiences of the joy of marital gain and the grief of homeland loss. And I knew he would die. . . though not so quickly. I knew I was leaving and losing everybody for good. . . though not that it would become so irreversible and sealed by so many deaths and changes. So I sobbed the whole way, clumsily knocking pew ends off with my massive bouquet of sunflowers.
I never really held the anniversary of his death, and so I don’t remember the date. I’m sure it was early October. I have a feeling he died on the 3rd and the funeral was the 9th. The time that reminds me of his death every year is not October, but actually in June when all of the shops start advertising for Father’s Day. People in the country where I now live scoff at the holiday as a fake capitalist construct by Hallmark, but it meant something to my dad. It took me many years to pass a shop in early June and stop thinking “Oh, I need to get a card for dad. Oh, I can’t.”
He just missed his 80th birthday, and his 25th wedding anniversary with my mom. That was 12 years ago, so that means that this month, had he lived, he would have been 92. wow. His birthday was at the end of October, either on Halloween or the day before, I never remembered. I just knew how much he hated Halloween. Not because of his birthday or for any principle or religious reason. . . it was just one of the many things in life that annoyed him.
Like the NASDAQ. He just hated the sound of it. He was obsessed with the news, but complained each and every time he heard a financial report, because he hated the pronunciation and the sound of the NASDAQ. Which I only mention at all to demonstrate that he was a strange man with many quirks. I inherited many of his quirks. I am bound by so many of them. We are so subject to what our parents give us, for good or for ill.
Dad was born in 1917. Which meant I had a somewhat different kind of upbringing for someone born in the mid 70s. The early 20th century in my home country (any country), was a very different world to the one I was born into, and he struggled to parent a child in the late 20th century. He saw so much. His brothers fought in WWII (one died in the Philippines), he was medically discharged with a diagnosis of schizophrenia (or at least I was told once). He was in the army air corps, he ran his own garage, he kept and remodeled classic cars, he drag raced other drivers on the highway, he snored loudly, he was in a country band that played on the radio in the 1930s, he got thrown out of university for walking a girl home and standing on her porch, he was reinstated and became an engineer, he started his own gym/training centre in his 70s, he had been electrocuted so many times that when he tried to teach me to use a compass, the needle would point to him, not north, he would come looking for me at 3 am when I was 18 and out with my boyfriend, telling me to come home, or else, and when that little girl of his came home a few years later from a foreign land and could no longer walk or pick things up or write or see and could not even lie in bed at night for the raw, heavy pain of the sheets on her legs, he stayed up all night and let her cry. So much happened to and around him. I can hardly blame him for the things he got wrong.
I have not been to his grave since the day of his funeral (now that was a strange experience! The service was run jointly between my mother’s Evangelical minister, my sister’s high Anglo-Catholic, gay priest and a an old friend of my father’s, a man who had spent time in jail for militia involvement and tax evasion as he believed the money belonged to God and not Cesar!). My mother has moved on and can’t go back. I wanted to go there when I recently travelled to the homeland, but there was no one to take me, and I never dared ask anyone. There were too many memories to drag anyone through.
Dad didn’t want me to go, but he knew he couldn’t/shouldn’t stop me. And now, just as I never knew my grandfather, my daughter will never know hers. I wonder if he had lived, if I would have stayed here, in my chosenland quite as long.
I wonder what a person is willing to give up for their family. He gave up so much. Family was everything. It was the only thing.
I’ve had a rough afternoon. I’m not going to shout about it here, in fact, I am learning more and more that, especially in regards to issues like these, where I must stand alone in my opinions, but find a way to stand up for them all the same. It is best not to say anything at all. I know it just invites invalidation. But, once again, my definition of what is right, doesn’t match everyone else’s. But I still think it’s right.
I’ve had a rough afternoon, and the love I feel for my daughter has almost never been stronger than it has been recently and my wanting the best for her has almost never been stronger, and my fighting spirit, like that Momma bear protecting her cub, has almost never been stronger. It’s just hard when a mum defines ‘the best’ differently to how everybody else does, when they simply can’t see what I’m talking about.
But then I’ve felt a bit lately like someone who has been trying to cope having lost one of their senses that they usually rely on. I’ve felt a bit lately like I’m not ‘clicking’ with other people quite right. I’ve felt like I’ve lost my social awareness. I’ve felt a bit like an alien again.
I’ve had a rough afternoon, and all I can think of is this song. And reading it, I am crying again. And I haven’t actually done that in awhile now. Until today.
Flowers are Red
by Harry Chapin
The little boy went first day of school
He got some crayons and started to draw
He put colors all over the paper
For colors was what he saw
And the teacher said.. What you doin’ young man
I’m paintin’ flowers he said
She said… It’s not the time for art young man
And anyway flowers are green and red
There’s a time for everything young man
And a way it should be done
You’ve got to show concern for everyone else
For you’re not the only one
And she said…
Flowers are red young man
And green leaves are green
There’s no need to see flowers any other way
Than they way they always have been seen
But the little boy said…
There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one
Well the teacher said.. You’re sassy
There’s ways that things should be
And you’ll paint flowers the way they are
So repeat after me…..
And she said…
Flowers are red young man
And green leaves are green
There’s no need to see flowers any other way
Than they way they always have been seen
But the little boy said…
There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one
The teacher put him in a corner
She said.. It’s for your own good..
And you won’t come out ’til you get it right
And are responding like you should
Well finally he got lonely
Frightened thoughts filled his head
And he went up to the teacher
And this is what he said.. and he said
Flowers are red, green leaves are green
There’s no need to see flowers any other way
Than the way they always have been seen
Time went by like it always does
And they moved to another town
And the little boy went to another school
And this is what he found
The teacher there was smilin’
She said…Painting should be fun
And there are so many colors in a flower
So let’s use every one
But that little boy painted flowers
In neat rows of green and red
And when the teacher asked him why
This is what he said.. and he said
Flowers are red, and green leaves are green
There’s no need to see flowers any other way
Than the way they always have been seen.
I just wanted to point you all to a link to a friend’s blog. Although, in many ways, our families are very different, I couldn’t express these particular sentiments better myself.
I worry a lot about my Flower and her frustrations and what she may have to go through in her life and how I will manage to go through them with her. Her uncertainties are my uncertainties. Her future is my future. And likewise, my struggles are hers.
So like my friend’s little boy, I know Flower needs me to hope. She can’t do it for herself. Not without me. Not yet anyway.
Sometimes, just sometimes, mind you, I begin to suspect, only slightly, that it might be ok, just ok, you understand, not desirable or right or rewarding, and certainly not auspicious, but just simply ok. . .
I’ve been wanting a chromatic tuner. You know one of those little electronic things where you play a note and it tells you if you’re sharp or flat so that you can tune your instrument. Problem is, to buy one of these things you have to go into a music store.
Now what’s wrong with a music store you might wonder. Isn’t it just a place that one buys things musical? Isn’t it it a place where one buys tuners and sheet music and metronomes? Isn’t it a haven for someone like me?
No! It is a Mecca of cultural sub-sets where buzzers and alarms start to sound when I come near it. It is a place where I don’t speak the language of the initiated or wear the uniform. When it comes down to it, it’s just a place where I-don’t-fit. before reading on you could refer to the first 1 minute of the following clip to clear up any questions on the matter:
I knew I was in trouble, first when I walked into a place that immediately reminded me of the the above clip, but with no satire involved, and then when I was looking at the tuners presented to me and the assistant asked me “So what is it you want to tune?”
I almost squeaked my reply like the mouse that I felt that I was:
“hamm-ered dul-ci-mer ?” and the look on her face confirmed that I would need to get out of there fairly quickly. “Um, I think I may just tune to my piano a bit longer, thanks.”
I had a similar feeling last week when my dentist asked me what kind of music I was listening to on my iPod and the only response I could honestly give him was “umm, indie/folk that has a bit of electronica and traditional eastern European folk influences thrown in?”
The look on his face was a winner too.
Most of the time, I’m ok with being different. Most of the time I’m ok standing out. But sometimes it seems like it might be nice to fit occasionally. Boring, but perhaps nice.
Ok, I realise that I was begging the Nirvana question, and I’m awfully pleased that you didn’t let me down. I’ll fess up, I was just waiting for someone to make that comment.
However, I had to rush the ending of that post because I got a phone call while finishing up the post and had to leave straight away. So, in the end, I never did really explain why I titled the post Nirvana.
I mentioned the whole “freedom from suffering, craving, anger and other afflicted states” thing, briefly, but didn’t get a chance to explain what it had to do with playing the hammered dulcimer, for me.
It’s the same thing I got from playing Bach (either on flute or piano). In Bach (or any baroque music for that matter, but particularly Bach) and in much of the note patterning on the hammered dulcimer, you get patterns that repeat themselves over and over again in different sequences and starting on different notes and changing between major and minor keys, but still based on the same pattern. This is one reason why people can play some of these sequences so quickly. If you master the first pattern and repeat it, then you just need to get yourself “ticking over” so to speak, and the momentum carries itself.
I find this kind of playing wonderfully meditative. It takes up all of my head space and I don’t have any room left to be worried or anxious or angry or afflicted.
The problem is, that it’s always a chicken and egg debate. I’ve spent a lot of time over the last decade or so of my life in some kind of ‘afflicted state’ or another, which didn’t leave any room for the music. When at the same time, if I had been able to concentrate on the music, I might have found a way out of my ‘afflicted states’.
But it’s never that simple, is it? The transition of moving oneself from afflicted state to being lost in the music is a difficult leap to make, which I believe is why I stopped being able to make it.
However, I think if I can just find that window of head space that allows me to jump into the music, then all of those meditative, repetitive patterns can take over and do their job. At least, I’m finding a way to crawl through that little window opening in the big wall of afflicted states at the moment. And hopefully, having done so to begin with, will keep me there for longer.
Many of my friends have spoken whistfully over the years about that ‘great time in their youth’ when they had the time and energy to sit and practice _______ [fill in the blank with appropriate instrument] for hours on end.
I never relished that time.
I always tried to make myself practice, I did. But I was young and, like most young people, more concerned about my social development than my musical one. I wanted it, I really did, I dreamed about it, planned for it, and chased after it. . . but the only thing that was going to get it for me, was the one thing I wasn’t doing and no one was making me do: Practice!
I began to learn piano when I was 8, flute when I was 10 (both of which I completely botched up the opportunity to perfect through such practice times) and started studying serious classical vocal music when I was 13. I took every oportunity to audition for whatever stage show/play/musical/choral/competition that I could get myself into, and had some fantastic experiences. I spent long hours rehearsing with my fellow performers. I began a degree at my first University in Vocal Music Education (which I also botched up mainly through lack of practice and an aversion to Theory homework) when I was 18/19, at which point I emigrated and changed to a university who had no musical or vocal programme. Then at 20, I got MS and my priorities changed. Then even more so when I got married at 21.
And there went a lifetime of music.
I occasionally tried to find a window to open to crawl through back into it all (voice/flute/piano teachers, amateur stage groups, choirs, church music) but nothing seemed to ever legitamise the former levels to which it all used to mean to me.
Then, for barely any reason at all, I bought a hammered dulcimer. An instrument I had learned about in my music classes at school and always liked the look/sound/thought of, but wasn’t an instrument anybody would really consider learning how to play, would they? Students chose pianos, trumpets, and flutes where I went to school. In my school, violin and stringed instruments weren’t even an option! So once a violin becomes an exotic instrument, you don’t seriously consider a hammered dulcimer!
So after all of these years I found myself at a bit of a loose end. Unemployed due mainly to medical reasons for five years, increasingly ill due mainly to stress for the last three, and determined to rebuild something through some kind of convelescence. Enter the hammered dulcimer.
Why on earth would anybody chose the hammered dulcimer? Why not?
So now that my daughter is being looked after most days by a playgroup and the school system (at the moment anyway… we’ll see) I have found it wonderful, as my more accomplished musical friends have already attested, to throw myself into several hours of practice a day.
The Wikipedia article on Nirvana describes it as “the state of being free from suffering” or “the perfect peace of the state of mind that is free from craving, anger and other afflictive states.”
Now, I’m really not a Buddhist, and I wouldn’t make a terribly good one at all, but I’m starting to wonder whether that’s what my friends were talking about.
the one I’m working on at the moment:
[youtube]http://www.youtube.com/watch?v=XvxSuuxv7N8[/youtube]
One of those mornings that starts out all lovely and happy and agreeable with talk of sleepy ogres and polor bears wanting to drink mummy’s tea and smiles and laughs and then somewhere halfway down the stairs heading for the Cheerios the ever present battlefield rears up its nasty, all consuming head.
NO I don’t want it!
NO I don’t need it!
NO I can’t DO it!
waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah!
What happened to Makka Pakka just needing some tea? What went wrong? I have no idea! It was on about step number 4 that we lost it. Does step number 4 house some kind of blip in the space/time continuum? And now mummy is left feeling terrible because not only did she never get it back, but she lost it even worse than the three year old!
Mummy has never excelled in the specialist area of Patience. What chance did I have? When I grew up “NO” was simply not an option (and of course we had to walk 10 miles to school, everyday, knee deep in snow, up hill, both ways, and we were just eternally grateful to even have a school!! yeah, I know…) so that now when I am confronted with it, I simply don’t know how to handle it!
NO, I’m the mummy.
NO, you’re only three.
NO, you must listen to me!
I feel horrible.
And although I managed to get the kiss and the cuddle of reconciliation from her before I left her with far more patient women than I (who don’t really need it because she’s always sweetness and light for), I still feel bad about it because I won’t see her again ’til 20 past 3 . . . when it will all start again.
It’s almost comedy these days to have a ‘therapist’.
Two friends came to take me strawberry picking, when the phone rang and held us up.
“Who was that on the phone? ”
“Oh, just my therapist.”
I wasn’t sure whether I was supposed to be embarrassed or not. I was honest about it, eventually, but I had the feeling like you weren’t supposed to admit to something like that. It seems that it places you firmly as someone who’s watched one too many Woody Allen films and took them to heart. You look into the mirror of your self assessments and the caricature emerges with half a bottle of red wine, or something vaguely worse, droning on with a long drawn out and overwrought monologue on anxiety and/or religious persecution.
“I don’t go to therapy to find out if I’m a freak
I go and I find the one and only answer every week
And it’s just me and all the memories that follow
Down any course that fits within a fifty minute hour
And we fathom all the mysteries, explicit and inherent
When I hit a rut, she says to try the other parent
And shes so kind, I think she wants to tell me something,
But she knows that its much better if I get it for myself…”
I am very aware how easy it is to become a caricature, and I both shudder at the thought and relish my uniqueness, if indeed unique I am. Maybe all of my friends actually have therapists, but feel that they’re not supposed to admit to it. I felt once that I wasn’t meant to. I don’t know why I actually fessed up in the end, but I did.
Like I said, I’m no good at hiding.
I’ve had them before, ‘therapists’ and I used to feel guilty or wrong or broken. The leaflets in the reception area of x, y, or z venue always say something like “A typical course of treatment is usually 4 to 6 sessions.” So always sometime after my 4th or 6th month or so, I start to think “What’s wrong with me?! Not only am I broken, but I can’t even get fixed in the same length of time as everyone else!”
I had to try all kinds before I actually had a positive experience. I don’t know what kept me somehow convinced that someday it might pay off.
I’ve tried Christian counsellors who would smile and give me a platitude and a Bible verse. I’ve had self important new agey types tell me to close my eyes and breathe deeply and imagine that I control the universe. I’ve been told by institutionally clinical CBTers to write down all of my wrong thoughts and change them into something that I clearly didn’t believe but something that would clearly be more acceptable to everybody else. I’ve been long suffering with volunteers who thought that the answer to an anxiety disorder was the added pressure of an action plan every week (because that’s what their training course taught them to do) and then got clearly frustrated and annoyed with me when I wasn’t making any progress. Why did I keep trying? I guess, a person just gets to a point where they’re willing to try anything. I guess I just had.
And as I’ve said before, I obviously have a brick wall in my front room that needs using for banging my head against, or it will be wasted.
I’ve found two good therapists out of many more I could have done without. My last successful ‘stint’ (before my current one) was between September 2001 and May 2002, and was the first time I had found any help from a saint who let me talk and talk and talk and talk and. . .
“And when I talk about therapy, I know what people think,
That it only makes you selfish and in love with your shrink.
But oh how I loved everybody else
when I finally got to talk so much about myself. . .”
This time I’ve been warming the proverbial couch since May 2007 and I don’t really feel bad about it anymore. I stopped worrying about going past my six sessions somewhere back in 2008 when I realised that all of that ‘unconditional positive regard’ stuff was one little thing that helped keep me going for another ‘one day at a time’. I thought I’d ‘come out’ in a bid to try and just accept who I am, where I’ve been and how I got here. I thought that I’d stop trying to squeeze myself in the box of people who pray every night “Dear God, thank you that I’m not Woody Allen,” who probably don’t actually exist, but that we all tell ourselves do.
I don’t feel bad about it anymore. . . but I do still often wonder if I’m supposed to.
It had been posted a time ago on somebody else’s blog (because they actually liked it), but I had it taken down and thought that it made more sense to have it on my own, but more than that, I’ve been thinking a lot lately about vulnerability.
An old friend (we met at university when I was still living in the Homeland about 15 years ago) called me the other evening. We hadn’t actually spoken (other than e-mails) in a long time, hadn’t seen each other in about 5 years, so we talked for an hour and a half. . . internationally. We talked about some difficult things, and it surprised me how easy it was to confide. When I hung up I briefly worried that I shouldn’t have been so honest, I mean, at least here on the blog, I know that if people didn’t want to know, then they wouldn’t bother clicking, but on the phone. . . well, you know how the ‘worst case scenario’ thought process works.
But my concerns were soon alleviated when I quickly received an e-mail from my friend saying that it had been good to talk and a very kind and empathetic comment on some things I had said. Acceptance from my friend, and relief from me.
I don’t lose friends easily or lightly.
You see, a very long time ago (shortly before I met my friend who phoned me, actually) I had another friend, this time from as far back as childhood, who I had thought would ‘stick around’. But when our lives travelled different paths, the communication stopped, though I tried to reestablish it many times. No responses. None. I had thought that whereas you could ‘dump’ a boy/girlfriend, that you couldn’t dump a ‘friend.’
I was wrong.
I had, in the distant past, confided many things to this childhood friend, but when life changed, when we suddenly were no longer children or even ‘youth’, those confidences didn’t seem to matter anymore. Perhaps he needed to sweep the past away. Perhaps I have been unfair to not understand my old friend’s side.
I saw this earlier friend when I recently travelled back to the homeland. I hadn’t seen or spoken to him in over 15 years and it surprised me how easily we slipped back into conversation. We talked for 3 hours over lunch about many things, about music, about our marriages, about mutual friends, about the old days. Almost like neither of us had ever left home or lost touch. . . but I have had no communication or replies since, and again I have tried.
No contact. None.
I heard or was told somewhere along the line that there can be no true communication between two people, no real friendship, no love, familial or otherwise, no meaningful interaction with God, and no honesty without mutual vulnerability that stems from trust.
On the whole, I agree with that. You, reader, of all people, if you visit here regularly, know that I can be quick to risk vulnerability, and I’m sure I do it for that reason. And generally I have trusted you with that vulnerability, though I may not even know you. Perhaps too quick to trust in strangers, too quick to establish impossible relationships between writer and reader. But for the most part I have found that in doing so, I have been greatly rewarded with the friendships that I have both reinforced and have found. By friends that see my blemishes, and ‘stick around’. I’d rather show those blemishes, as I’ve never been any good at hiding. I’m always found out.
But where there is trust, there is vulnerability and where there is vulnerability there is a risk of rejection, like with my earlier friend, and where there is rejection, there is hurt. I guess I got my hopes up after the reconnection.
There’s a part of me, actually, that doesn’t mind being rejected, as long as it’s early on in getting to know someone, as long as it happens before I have made myself too fragile in the face of the prospect of that rejection. If I say “this is who I really am” and you reject me, before I have a chance to lose too much, that’s ok. I can accept that. But if I spend years establishing a friendship, I will feel like my vulnerability has been trampled on under foot if they suddenly turn and walk the other way. (Thus an old, perhaps bitter, poem, written to an old friend, who didn’t ‘stick around’.)
So why do I put myself out there? I guess, because I think that if I do, put myself out there, warts and all, and you keep coming back to read, or to speak to me, or to waste/spend your time with me, then perhaps you won’t reject me. But there’s always a chance with friends who aren’t honest with each other that the secret of warts will be found out and the rejection is sure to follow. That kind of rejection hurts because it is never expected. So, I guess I’d rather show my warts. Because I know they’ll be found out anyway.
I write all of that because I was reassured by my university friend after our phone call the other evening, that my warts aren’t so repugnant and there would be no rejection today. I write this, not to mourn a lost friendship, but to celebrate a good one. When I wrote that poem so many years ago, a rejection was fresh and raw, and I was still willing to reestablish a friendship. But after talking to and being reassured by my other friend, it has reinforced the idea that I think I’ll just concentrate on the friends who ‘stick around’.
—————————————————-
“Time it was and what a time it was it was,
A time of innocence a time of confidences.
Long ago it must be, I have a photograph
Preserve your memories, they’re all thats left you.”
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
1. The illness I live with is:
Multiple Sclerosis
2. I was diagnosed with it in the year:
1996
3. But I had symptoms since:
1995
4. The biggest adjustments I’ve had to make is:
the fatigue, the loss of complete independence. the necessity of energy conservation.
5. Most people assume:
that I am “well” in between relapses
6. The hardest part about mornings are:
the opening my eyes bit, never feeling like i woke up.
7. My favorite medical TV show is:
i hate them all
8. A gadget I couldn’t live without is:
the car
9. The hardest part about nights are:
insomnia
10. Each day I take __ pills; vitamins:
a largely varriable amount of
11. Regarding alternative treatments I:
judge my practitioner very carefully, currently i have an acupuncturist (since 02) and a psychotherapist (since 07) but have recently ‘dumped’ several others.
12. If I had to choose between an invisible illness or visible I would choose:
visible, hands down!
13. Regarding working and career:
have had to give up the prospect, but have enough denial left to occasionally entertain the thought of what to try next, usually end up discouraged, then give up.
14. People would be surprised to know:
well if i haven’t tried to tell you yet, then i’m probably not going to. but you’d probably be surprised how fatigue is really nothing like being tired.
15. The hardest thing to accept about my new reality has been:
that once something is gone it’s gone. it’s not coming back. and you don’t realise that it’s going until after it has happened.
16. Something I never thought I could do with my illness that I did was:
on the contrary, i always thought I would do a lot more than I have.
17. The commercials about my illness:
make me feel angry, objectified, pitied and patronised.
18. Something I really miss doing since I was diagnosed is:
hiking, dancing
19. It was really hard to have to give up:
hiking, working, travelling, dancing, stage things… didn’t we already have this question?
20. A new hobby I have taken up since my diagnosis is:
well, i took up cross stitch once, but then i lost too much eyesight to do it anymore (besides getting bored). does hammered dulcimer count as a hobby?
21. If I could have one day of feeling normal again I would:
hike into the Grand Canyon
22. My illness has taught me:
things I’d rather not know.
23. One thing people say that gets under my skin is:
“But you’re so young!” oh wait, no they don’t say that one anymore, cause I’m not. So how bout, “But you look so normal, I would have never known!”
24. But I love it when people:
empathise rather than pity.
25. My favorite motto, scripture, quote that gets me through tough times is:
The Letter to the Church in Philadelphia Rev 3: 7-13 (personal reasons)
26. When someone is diagnosed I’d like to tell them:
don’t waste your life waiting/looking for ‘the cure’. don’t fight your body/illness, you’ll only be fighting yourself. try to work with and accept it.
27. Something that has surprised me about living with an illness is:
how many people have huge misconceptions.
28. The nicest thing someone did for me when I wasn’t feeling well was:
bring me banoffee pie in hospital and then washed my very long hair in the sink for me when I couldn’t move and the hospital nurses hadn’t done it for me for two weeks. and also bossing the ward sister around when I had been left alone in my own sick because they were too busy to bother with me. (thanks E, I’ll never forget it.)
29. I’m involved with Invisible Illness Week because:
I have an Invisible illness
30. The fact that you read this list makes me feel:
I’ll come back to that question if I ever find out that somebody has actually read it.
Funny how being away for only a few days can disrupt one’s centre of gravity, make one lose foothold and unshakable stability.
I am still well and still feel secure in that, and thank you so much for all of the comments. (I often think that I only write for the comments). However, just right now, I need to rebalance, re-root myself now that I’m home.
It just might take a few days.
After all, I did better this time than I would have done not long ago.
it’s a strange thing to wake up one morning after twelve years in a practical drug induced coma and find that nothing hurts anymore. Just that quickly.
No, not a coma, because there was still life there, just an altered one. More of a zombie, than a coma. It’s a complex explanation, what I mean by that, but it doesn’t feel that urgent to elucidate right now. Suddenly, I don’t feel that I have to.
My friends haven’t even relised. People are still acting towards me as if I worry, as if I’m anxious or sad. They say “oh don’t worry… blah blah blah” and pass on pieces of advice to help me through the crisis. . . when I’m no longer actually in one. They mean well. But’s it’s clear that my old state of anxiety made others anxious, and I am sorry to have been a burden. I don’t know who I am yet, myself, so I don’t say anything and I smile and nod. . . and wait until either I’m better at explaining or anybody wants to know enough to ask me something about it.
I have very little memory other than things that I have written either on my blogs or in my journals, and I don’t necessarily currently want to review.
Recently, after I woke up, I got curious as to what had happened, so I went to my doctor and asked to be made a print out of every perscription drug that I had been perscribed since 1997 and the date ranges that I was on each. This is a small charge, but my right to ask for under the Data Protection Act.
The print out came to 50 pages.
450 individual perscriptions, some repeated for years, some one offs.
I counted 38 oral medications, 22 topical skin allergy treatments, 20 individual perscriptions for 7 different antibiotics and 6 different anti depressants perscribed over 12 years (one of which, I had been on for several years and at several different times, but is now removed from the market, because patients started dying of liver failure while being on it).
Some of the drugs were as benign as moisturising lotion and ibuprofen, others as strong as pethidine, immunosupressants, an anti-narcoleptic and 3 different antipsychotics (percribed to me not for mental health reasons, but because they were known to have helped in various MS symptom treatment, like pain and virtigo. And no, they didn’t help me.) just to name a few.
Plus the list did not include any medication that I had been given during my 4 or 5 lengthy stays in hospital or scripts written directly by my consultants.
I have researched the side effects of each one and looked at the number of various ‘drug cocktails’ I was on and also tried to align what I was taking when different things happened in my life, and the pattern is shocking. I feel like I can be less hard on myself for having achieved so little over that time. I am aware that several of the things that I was on, and combinations thereof, nearly killed me. Litteraly, not figuratively. It feels a bit traumatising to realise that, and I’m not fully able to think about that yet.
This morning I sneezed and took an anti-histamine and my daily multivitamin. That was all I took. I’m ‘clean’.
I’ve weaned off of everything else, even the self injections.
It’s all out of my system and my brain and body has now got used to making and using it’s own chemicals again. (brains stop doing it for themselves after having it done for them after awhile.)
I feel good.
I haven’t had a panic attack since 18th of July, and I’m not even anxious about possibly having one anymore. I barely remember what it feels like. That doesn’t sound like a long time. But the difference is amazing!
I can pray again for the first time in a very long time. I won’t get into the spiritual side of all of this right now, but there is one. I don’t recognise myself, but I’m happy to wait… because for the first time in 12 years, I’m calm enough to do that. I’m hoping that I actually have another 12 to wait in.
… but tonight at dinner, the Flower Child picked up a piece of watercress, twirled it around and said, “oh look! it’s like a tree! it’s a plant! you can eat it!”
three distinct concepts, restated in different ways (like a tree, a plant, can eat it) but linked together to describe one object, including a similie to aid thorough and varied description.
My faith story has been more of a “crawling towards the finish line, panting for water, clutching hold of whatever I’ve got left and trying not to drop it or get hit by a car” kind of experience rather than a “thunderbolt, zap, bang, Damascus Road, WOOHOO, Word from God” kind of “wow everything’s so different now” kind of experience. . .
. . . until about two weeks ago. But I kind of think that if I had met Jesus on the Damascus Road, it would have been a lot easier to talk about than what actually happened.
I just wanted to say that. That’s all for now, but I just thought I’d say that.
A friend charged me recently with being cryptic in this blog. I know that his accusation was just, and thus the grin to myself as I recall it. So why should I write at all, if I’m not going to tell the whole story?
Memory is fickle and understanding is unreliable. If these memories read as a fiction to you, then I look forward to the day that they will also look so to me.
This chapter to my story is coming, perhaps even has come, to a close, yet my naivety is not grand enough to be fooled into thinking that the book will be shelved and forgotten for all time. That is not how the book of life works, but then, I know now that I never did know how life works.
At all.
I have discovered fatal flaws in the memories that I had once believed that I had. And strange to find that I’m not that bothered to have been wrong. For when everything had looked so bleak, to have the slate wiped clean can be a relief.
I had not known that the bags I had been carrying had never been mine to carry, and that I had never been meant to lift them onto my shoulders.
It is all a bit lighter now. And starting the journey over, though daunting, is ok.
I feel like i’ve been gone a long time. I feel that I have not spoken to you in an age, dear reader, though it has been only days, not even a week. Though when so much can happen in one afternoon (not today, nor yesterday, but not long ago), it feels that you have not seen others in a long, long time. if ever before. and it will require new eyes, in both directions, to see at all.
I think that I have been gone longer than anyone could have known. For 17 years, I have been gone, but just as the wrongly accused is released from prison late in life, one can not walk free as the same person who was arrested in their youth.
It is good to be back, to be here. . . and to know the place for the first time.
. . . through the unknown remembered gate
when the last of earth left to discover
Is that which was the beginning. . .
Had to share this. Dee shared this earlier and I just love it! Have been very interested in the mind recently and how it works in relation to all sorts of things anyway, and the fact that this happened so easily and naturally with no rehersal with, I assume, an audience full of people who generally didn’t know each other shows me that there is some comment thread among us all, really.
Of course, yes, you can make all kinds of excuses about cultural expectations and how those present were probably all of a similar mindset but . . . just watch it and don’t look for the holes. ok?
(I had a choir master do this kind of thing once, and it’s surprising how easy it is to follow.)
“Time present and time past
Are both perhaps present in time future,
And time future contained in time past.
If all time is eternally present
All time is unredeemable.
What might have been is an abstraction
Remaining a perpetual possibility
Only in a world of speculation.
What might have been and what has been
Point to one end, which is always present.
Footfalls echo in the memory
Down the passage which we did not take
Towards the door we never opened
Into the rose-garden.”
Attended a portfolio day to discuss my work with ‘a professional’ on Saturday. Why is it that I left disappointed that she only had good things to say about what I had produced? (I know I’m not ‘there‘ yet, so I guess I was hoping she could tell me all of those things I had left to do, enough critisism to give me something to work on.) Why were her suggestions to go ahead and do the future things that I really want to do and try for the thing I want to try for and that she thought that I was good enough to do them so disheartening? (I want what she suggested so badly, but know it’s not possible.) Why was it that when I used to be such a believer in grasping the impossible, that when I used to be so willing to try anything that I could imagine because what have I got to lose anyway, go anywhere, have faith that something will work out, never give up, why was it that when she only half jokingly suggested that I write to Annie Liebowitz and ask if I could go on several weeks work experience with her, just for the hell of it, that this once upon a time dreamer, crazy risk taker wanted to cough and say “Shyeah, RIGHT!” Are you mental?”
It has been a long 15 years. And I’ve gone a lot of places I didn’t want to go because of both circumstance and of cruel fate and sometimes because of the very risks that I took, and I never in all that time stopped trying.
I received something in the post yesterday, I assume from either the health visitor or the docotr’s office that said “Congratulations, your child is 3! Now that your child is 3, she should be able to:…” and then listed all manner of developmental things like kicking a ball and standing on one foot etc, many of which the Flower Child can do.
However, I don’t know of any parents who actually appriciate these kind of mailings, as it always points out those things that are ‘different’ to the ‘norm’ in your child, and makes you as a parent feel that perhaps you have not encouraged all aspects of your child’s development well enough. ah, underachievement in the child, failure as a parent! (of course in all rationality, we know this isn’t so, but…)
As I tried to remember if I had ever seen Flower walk on her tiptoes, and decided that she may have some trouble achieving this, along with a few other milestones on the list, I said to myself and to the piece of paper:
“Yes, but my 3 year old can correctly aurally identify and name the difference between flute, guitar, trumpet, drums, violin and piano when heard in a given piece of classical music. Bet yours can’t. HA, so there!!”
Now we just have to work on Sonata composition, and we could have a budding Mozart.
There’s another piece of writing I need to work on for a bit, and as the flower child’s morning group breaks for the summer on Wednesday, and I can’t seem to get my wordpress template working quite right, I am intending to take a bit of a little break from blogging. . . well, that’s the intention anyway. We’ll see if it happens.
“One’s life has value so long as one attributes value to the life of others, by means of love, friendship, indignation and compassion. ” – Simone De Beauvoir
I have realised recently that I might start to like myself better, if I started to like other people better.
Have been reading curiously through an old journal from 1997. What a facinating journey! Have just read:
Monday, January 13, 1997
As I was standing at the pier watching the waves on the rocks, I looked up and saw M and A standing a way off. I know that A saw me, but he said something to M and they both turned and walked the opposite direction. I think I would have turned and walked away too had I been them. The ‘me’ they knew was a strange creature. . . problem is that she is no longer me. So I do not mind having been snubbed by them, for I know they only snubbed the person they thought they saw standing there. . . not me.
I took a lot of photographs when I was back there. Snaps, mainly. And most of them from a moving car or plane window. But none of them were of places that really meant something to me. Except for a few snaps of the house I grew up in and called my home for 20 years, speeding past from a car window so as not to stand on dodgy ground longer than needed. And that is so different now anyway, as if it had been built again. All the trees are gone, the two towering blue spruce where the blue jay made it’s nest each year, my mother’s flower beds and the peonies– all gone. Even the windows and siding are different colors. . . that house wasn’t mine. It was a facinating specimen to photograph, but it wasn’t saving a memory. That house was never my home. Those snaps were of nothing sacred.
The sacred places would have made better proper photographs. But were perhaps too risky to attempt. I dared not.
My camera has lain dormant for several months now, so recently I have bartered in the old style currency of words. I wonder why. Even the simple swan photo I posted the other day was from my archives. In part I know why, and am confident of my photos returning someday soon, but right now, even though words are a somewhat riskier endeavour, in a way, they fill a space that the images left, and at least prevent a complete block.
And besides, there’s really nothing at stake anymore anyway.
Let me explain. How many times have you said that? Most often, in my experience it is often said, if not in jest, but with a tinged, edgy sarcasm. But what if it was real? What if someone really meant it? How could someone live with it? How could a person deal with not only their own emotions, but try to deal with everyone else’s as well. We can’t, not really. Our own collection of pains, issues, excitements and worries are just about enough for any one person. It drives us into ourselves, and takes us away from the rest of the world.
When I was studying philosophy at university, we often discussed a problem which I’m sure had a proper philisophical name, but I left that dicipline so long ago that I can’t remember what it’s called. Anyway, the discussion was as to whether or not any particular person can ever truly know another person and what they experience. I seem to remember that the most accepted argument leant towards “no, no one can truly know another person.”
I’m not sure I ever really came to my own personal conclusion, I just know that I’m quite sensitive, and sensitive to what other people are going through. I realised recently that when my friends and family hurt, or are frustrated, or are annoyed, or are disappointed, or are nervous that I am hurt or frustrated or annoyed or disappointed or nervous. (yes, sometimes it works with positive emotions too, but not as often. )
My therapist would say “Do you think that in some way that actually helps them?” and of course the answer is “no, of course not.” But for some reason it’s not something so easily rationalised out of. Basicly, when other people hurt, I hurt. And I think, essentially, it was the way I was brought up. We should bear one another’s burdens. Somewhere along the line that got translated into “we should experience one another’s burdens instead of them,” as if that were possible and all of my vicarious hurting for everyone else will somehow lift someone else out, save the world, stop all the wars and seal up the hole in the ozone layer! Somewhere along the line I became responsible for the smooth runnng of the planet.
Which, if I’m honest, and I’m too often not honest enough about it, I’m not really strong enough to handle. But truly, old habits are hard to break, and I’m still trying.
Today I discovered words again. Last night I wrote them, today I listened to them. I now have a working and useful screen text reader installed on my computer and it is like a whole new world has been opened up to me! Yet now that I am able to once again read the words of others, I don’t, just right now, seem to be able to write them myself. Last night I wrote that poem a friend had assigned me awhile ago. After not being able to even approach writing poetry for so many years, perhaps I used up all of my words in doing so.
Instead, today, all I can do is offer an image. Images are the same thing as words anyway, they just sound different.
This morning, the sky outside was completely black with clouds and the rain drove itself hard into my window. Yet, somehow there was yellow sunlight reflecting on the trees in the park. Where does that come from? it seems to happen a lot in this part of the country. black sky, sunlit trees. The dichotomy suits me.
A few months ago now the phone rang. “Ro died yesterday.” it wasn’t a shock, she was 93 and had been poorly for a while. But the familiar sinking feeling that comes along with the death of a friend was inevitable. I guess, when a person dies, sometimes it’s a sinking feeling, and sometimes it’s an implosive collapse. Sinking doesn’t last as long and is more easily recovered from. I’ve experienced both. I am sure it makes no comment on the worth of a life how the living react to their death.
I found out a while ago that TL died. She was 29 and died in a car accident. I didn’t really know her very well, and had never been in touch since school, but had volunteered working in summer camps with her when we were in high school. Again, that sinking feeling. Our lives had brushed against each other enough to have torn something out of me when she was gone from this sphere.
Two and a half years ago, my friend M was killed. he was 23 and had his young life forcibly taken from him while working with displaced children and communities in northern India. We don’t know who we don’t know why and even the mere mention of his first inital will cause so many who read here to recall that implosive collapse so I will say no more.
Oliver Postgate died recently. He will live on in his creations that meant so much to so many children (and adults). Michael Jackson? His body gave up the fight. The list of celebrities stretches on. We didn’t know them. We thought we did, but we didn’t. We thought that they had given something to us, and perhaps they did. Perhaps enough so that we felt the rip of something being gone.
My grandmother died 10 years ago, my father, 12. My aunts and uncles, I’ve lost count of the number and of the years and the ages. I am certain that it makes no comment on the worth of a life to us if we can no longer, nor any longer do we try to, remember the history or the particulars.
Ro went to my church and was a stallwart member of my community. I looked up to her and can not forget her.
In fact, I don’t think I even would have rememberd TL but for a photograph that i have in my albums. But as her image is in my book, I will never forget her.
M was my friend and a friend of my friends. He ate at my table and played my piano. We talked about photography and when I see his face in snapshots from parties, I always feel slapped. That face does not inhabit this earth any longer.
We are not allowed to forget celebrity. It isn’t that we ever knew them, but we did know something of them. They were a part of the jigsaw we have appropriated into our lives and is now missing a piece.
Then most recently there was Ra. Ra was in her early 30s and the mother of three young children, one of whom was newborn. Ra was a part of my life, and now she isn’t. I didn’t often see Ra and now I will never see her again. Only weeks before she died, I was posting baby congratulations onto her photos online. Only weeks before she died I was thinking of her, of her family. Now I think of them for different reasons.
Thinking of Ra reminds me, more than the others, more than I am comfortable with, that someday I too will not inhabit this earth, none of us will. That someday, as I can no longer talk to or see or touch my own father, my daughter will no longer have me.
I wonder about you, dear reader, and whether when I am gone too you will still remember me? Did you know me well, did we speak, do you remember? Have you seen my picture, or something I have created and did either stay with you? Was it discarded or held onto by you? Are my words remembered, or will they die with you too? What will my legacy be, or will it be wasted? What have I done that will touch those who come after? And on the last day of the world, would things have looked at all different if I had never been here, and what does it matter? If a butterfly flaps its wings in the 21st century, will the world look different in mellenia hence?
Am I only flirting with an unobtainable immortality by bringing my life near to anyone else’s, in the fruitless hope that my memory will live when I do not? Is that why I write here, is that why I take my photographs, is that why I allow my life to brush with anybody? And in that meeting am I passing on anything real or true or worth saving? Is that even possible, or will it all disappear and die? It is a mystery too big for me.
Every day a little death in each of us, that’s the way we were created, though we live for so many years not knowing or realising it. Something is torn out of us when we confront it, when too many people are no longer with us to go on pretending that there is any kind of earthly permanance. We clutch onto our photographs hoping in someway that it can put something back that is now gone, we write down our memories hoping for these changes to halt themselves through our rememberance and our stories.
The fragility of life is entrusted to the living, in the words and memories and photographs that remain. Though words will be forgotten and photographs will eventually be turned to ash. At least presently, I know that the butterflies who have flapped their wings in the midst of my own life, have made this world a very different place.
Selfishly, and vainly, I find myself wondering about my own wings and of their ability to imprint a picture on the world, from any angle or any distance.
I’ve had insomnia since I was 18. It’s been much better this past year, but worse in the mornings lately, and so this morning. I’ve been waking up at sometime between 3.30 and 4.30, lying awake worrying about my role in all of the calamaties of the universe until about 6.45, then falling asleep and being woken up by the alarm at 7, then lying in bed, sometimes falling back to sleep again until 8 or 8.15, by which time, I really should have been awake.
Anyway, in one of those falling asleep bits this morning I dreamed bitty dreams. I don’t often dream. It takes deep sleep to dream, which I don’t often manage. But usually when I have a dream, it’s longish, and with some kind of scenerio, as I assume most people’s dream’s are. But this morning, I just remember seeing my mother who pointed and said, more or less,
“Act your age! You’re not 3, you’re 33!”
And that was it. I woke up and needed a cup of tea.
But she’s right, you know? And I think it sunk in. I’ll try harder, mom. . . and the rest of you. Sorry.
I never thought that I would do that. I never thought that I would stop appriciating what I had. But perhaps one only knows exactly what they have when it begins to fade.
I know now that I never fully appriciated my first family until it began to die, disappear and break apart.
Then, I chose a new family. A new family, not of blood, and not of marriage, and not of relation. It was bigger than any of those. Family was suddenly wider and all emcompassing. Bigger than a surname, than even a way of life. It was extended family in the truest sense. How could I have found a new family so large without those natural ties? I took for granted that it could stay the same forever, and I would never lose that again.
I know now that I never fully appriciated them.
My first family used to gather, and tomorrow would have been one of those significant dates to gather. Gathering was a way to reaffirm that family is family, blood is thicker than water, that despite the rest of the year, at least we still gather on this day and ‘do this’, because we are family and this is what we do and this is who we are, whether we like it or not. It wasn’t always pleasant (because family isn’t easy), but it was affirming.
My second, chosenfamily, as well, used to gather. Again, it wasn’t always pleasant, but to me, it was reaffirming, a way to define ‘this is who we are’ and who I am. I knew who I was in the midst of them. But now the whole looks a lot smaller to me, a bit more fragmented.
And rationally, I know that’s ok, and I know that moving on is a normal and grown up thing to do. But emotionally I fear the segmentation. The move from defining that ‘we are we’ to ‘I am me’ looks scary from this angle, because suddenly there are fewer landmarks, fewer guideposts. And I continue to try to find a cord to tie the parcel back together again. Whether it’s the right thing to do, or not.
It may be the grown up thing to do, but for this disabled woman, who has spent so many years leaning on the crutch of her new family, going out into the big wide world looks a bit scary and I simply want to have some chicken soup and go back to bed where it’s safe.
Don’t it always seem to go, that you don’t know what you’ve got til it’s gone?
But, again, rationally, I know that the best families help their children to stand on their own two feet. To leave their father and mother and do their own thing instead.
Thing is, when I left my father and mother, the thing I chose to do. . . was to form a new family.
… I’ve added a new flickr account RSS feed to the right, though I had been hoping it might upload at least thumbnails rather than just text. And if anyone knows why my photo frame (at the top of the blog) won’t let me upload and customise anymore, or what I can do to fix it, just let me know. Ta.
Reverse psychology actually works on my three year old!!
The insights into baseline human nature that looking after a toddler gives is not only frustrating, but frightening. The natural instict towards opposition and rebellion is truly one I’ve never understood. But suddenly when she thought she was doing something I didn’t want her too (“Flower, DON’T eat your toast!”), she did exactly what I wanted her to. . . but only so long as it was the very thing that she actually wanted to do, but didn’t want to do it if I wanted her to do it!
Sometimes I just feel like, why did I struggle all those years to get through my own childhood/adolescence to become a fully mentally and socially functioning grown up, only to turn and walk straight back into the midst of the irrationality of the phase I worked so hard to leave.?! Do I have to wait another 20 years to find sanity, only to find I’m too late to do anything with it?
Have been determined to discover some new music lately. Not just newly released, but new to me.
About a year ago, husband and I stumbled into some music, so to speak. We have a LOT now, not that we were really hurting for music before, but this is a LOT of stuff and a LOT of it is good and a lot of it is classic. (that’s not to say that there isn’t bad stuff too) It has made me aware of how much that I’ve only exchanged passing glances with and really needed to explore a bit deeper. So at the end of May, I had a major photography deadline and wanted to shut myself away in my room with no one and nothing else but a bunch of musicians, a laptop, a printer and a slew of jpegs.
So I’ve been telling myself that I’d write out some of my discoveries. These are not all the albums that I tried out and not the best or fullest of descriptions (I’ve never been good at writing reviews), but just thought I’d get it down, at least in part, before I forget.
I’ve just decided that I could keep writing and writing about this tonight, but really don’t have time, so I could always come back to it later. But here is some of my musical discovery of late, at least in part, and all of it is influenced by the fact that I was looking for something I could work to. So my assessments might be very different, when listening at rest.
Albums discovered that I could listen to as a whole over and over again. (Couldn’t work to these, they were too good. kept listening to the lyrics):
1972 – Neil Young – Harvest
1977 – Peter Gabriel –self titled (Car-album cover)
(What can I say about these two albums?! I think my loss for words says enough.)
1999 – Divine Comedy – A Secret History (an album where everybody probably knows a good proportion of it, but hasn’t listened to the whole thing. So I did listen to the whole thing. And really enjoyed it. Lyrically clever, always liked his voice and singing style, all around pretty fun.)
2007 – Beirut – The Flying Club Cup (This is my ultimate musical discovery of the year! Suggested listening by a friend, I read the sleeve notes first and it immediately intrigued me and it reminded me of Rilke’s prose [a favourite], though Rilke wasn’t any actual influence on the album. The album was actually inspired by an old photograph of hot air ballooners found in France. The photos in the album are lovely. The music was intriguing, different, powerful, emotional, descriptive and just plain good. Lyrically the songs made for good poetry with or without music and Zach Condon’s voice could melt marble! The sound of Eastern European folk brass along with French accordion was actually beautiful. The lyrical imagery was as well.)
1984 – The Smiths – Hatful of Hollow (but anything Smiths will do. These, actually, were pretty good work albums too, really. They’re just good albums.)
Album discovered that I could listen to as a whole, but once was enough for one day:
1999 – Penguin Café Orchestra – When In Rome (enjoyable. I really liked this, like the first time I heard it, but didn’t want to stick it on ‘repeat’.)
Tried, but I’ll pass:
Camper Van Beethovin (might try again, might not)
California Guitar Trio (kind of got bored)
1976 – Phillip Glass – Einstein on the Beach
1982 – Phillip Glass – Koyaanisqatsi
(These two upset my cat. I wasn’t far behind.)
Albums I discovered that were good, but I couldn’t listen to for more than a few tracks at a time:
1975 – Patti Smith – Horses (great album, great performer/artist, but started to twitch with nervous energy after about 4 tracks. I think perhaps this is one to listen more to the individual tracks than as a whole. for one’s own sanity’s sake.)
1973 – Pink Floyd – Dark Side of the Moon (again, great album, and there are individual songs I’ve always liked, but as a whole, and with an impending deadline looming, I opted for something a little less unstable, more calming and encouraging. It was kind of like when my roommate and I lay on the floor in a darkened room in university and listened to the Beatles’ Number 9 (on Revolution 9) and totally tripped out, stone cold sober. Anyway, I will give Dark Side of the Moon another listen as a whole album, but not when I have anything pressing or nerve wracking, I think.)
1983 – Police – Synchronicity (Actually, I’ve always really liked this album, but again was getting a bit anxious. Some tracks better than others.)
Album I just didn’t like:
1997 – Radiohead – Ok Computer (don’t know whether I think it’s good or not (I can admit to something being ‘good’ even if I don’t like it), I couldn’t get past the first track!)
I found these Good albums to work to:
2006 – Cat Power – The Greatest (I think I actually enjoyed her, but would need a few more listens before assessing whether or not she’s actually good.)
2008 – Ting Tings – We Started Nothing (ok, this was a bit of a surprise to me. I didn’t expect to be ok with or cope with it, but the sheer energy was conducive to a deadline, which is why I think I went for it in the end. I don’t think I necessarily think it’s good, or that I would go out of my way to listen to it again, but it was ok and it would be good for house cleaning to. House cleaning needs something with energy.)
1959 – Ray Charles – The Genius of Ray Charles (was surprised that it was all instrumental And just simply, he was a genius.)
1988 – The Clash – The Story of the Clash (2 CDs) (couldn’t listen to it everyday, but good stuff.)
Talking Heads – all of it (I love Talking Heads, have for a long time. discovered them late on, really, in ’94. I don’t know why, there’s just something cathartic about David Byrne’s style that I can relate to. . . no, don’t think too hard about that!)
Things I used to listen to a lot, but on revisiting, didn’t really want to revisit. Not bad stuff, just for then, not for now. At least, for now, now.
Waterboys –made me sad and nostalgic
Smashing Pumpkins – could take it or leave it this time
Indigo Girls – who wants to be 17 again?
Tori Amos – who wants to appropriate all that angst? (also, see above comment)
Fiona Apple – didn’t realise she was so angst ridden too.
Seal – this one actually fared best of this section for listenability. He’s pretty good. Actaully, yeah, I still liked this one.
Would, of course, as always, be interested to hear what you think.
I fear I may have given some of you a skewed impression.
An impression that what you read or see here is a picture of “me“. And whereas that is not untrue, it’s not completely accurate either. It is, it isn’t. You decide.
This blog is a reflection, a dark mirror, an impression of a carved relief, a place to store the tapes that run through my head, especially in the mornings and especially as of late, to allow for a less noisy approach to my day. It is a place to leave it, so that I stop carrying it, hearing it.
That’s all.
And you may or may not have an out of focus picture. It is all true (I would never offer you lies, my reader, only truth), but it may or may not be fact. Because this photographer can only take and present these pictures in whatever way she chooses. You, reader, will take from them what you will. The viewer always does.
When I was little, I used to feel, as you did too probably, that my parents misunderstood me a lot. When I would do something and get in trouble for it, I would often be bemused and perplexed. How could they have misunderstood what I was trying to do?
My daughter’s look of absolute shock and confusion when I told her off the other day for drawing on her wall, reminded me all too well that, like me, she was probably innocent of any willful wrongdoing, and I felt chastised in not understanding her.
When I was a teenager, I used to feel, as you did too probably, that everybody misunderstood me a lot. I was figuring out that I was this person with all these thoughts and opinions and hopes, feelings and aspirations. But I was often perplexed at the fact that other people, friends, family, teachers, audition panels, universities, employers, didn’t ‘get it’. How could they have misunderstood what I was trying to do with my life?
When I’d stay out all hours of the night, when I’d get into trouble with my father at three a.m. for being out with my friends, the accusation was that I must be doing something wrong. Taking drugs, drinking, being reckless. When really, all I ever did was talk, try to find a place for me. The accusations hurt. Didn’t they know that I wasn’t as bad as all that?
Now that I am older, I often worry, as I have no idea if you ever do, that I have been misunderstood, misinterpreted, mistaken. Things that to other people might be water off a duck’s back, to me plague and unsettle me, still believing people think wrongly of me. I remember how often I felt wrongly accused as a child and even more as a teenager and react in fear that it has happened once again, that once again, it has only been a ‘misunderstanding’. The fear of accusation sometimes withers me.
I have learned that I am ‘different’, and I do/think/behave/mean differently to the people/culture around me. Often being ‘different’ leads to my expectation that others will misinterpret me, and getting into trouble, when, at least I believe, that my intentions have only ever been the best.
burntsienna is dropping everything
burntsienna is clumsy
burntsienna is not as well as she has been recently
burntsienna is looking out the window
burntsienna is often loquacious, but not this week
burntsienna is is in pain, but only slightly
burntsienna is listening to Classic FM
burntsienna is only trying to break the silence
burntsienna is nostalgic
burntsienna is lethargic
burntsienna is stuck
burntsienna is looking
burntsienna is many things
burntsienna is provocative
burntsienna is inert
burntsienna is disappointed
burntsienna is sorry
burntsienna is concerned, not worried.
burntsienna is restless
burntsienna is bored
burntsienna is ineffective
burntsienna is not depressed
burntsienna is . . .
The window envelope sat on the bed waiting for, daring me to, face it.
“To the parent(s)/guardian(s) of ______ ”
Of course it’s a standard, administrative way to address correspondence to the parent(s)/guardian(s) of a child, but after our/my struggle to become the parent(s) of _____, I’d really rather not be referred to as the guardian(s) of _____.
Call me picky, but. . . some things still just rub the wrong way. some things still hold the memory, and I’d rather not.
I knew what the contents of the letter would be, and I knew I would have to open it. I knew that if I opened it I would have to read it, and I really didn’t want to, but thought I may as well get it over with.
Yes, it retold all the gory details of that unpleasant meeting in May, where it was made perfectly clear that I am completely wrong, though he, our professional correspondant, was aware of how controversial the argument was, though he was aware of how passionately I felt about the issue at hand, and how he could understand how i felt and how stressful the whole thing was, but in the end. . . i was wrong. A room of two senior professionals (one, top in the country), one junior, and another adult all stood on one side of the line drawn in the sand, and I slid my chair back, quite literally, to the other, ganged up on, and standing out. Was I that strong to stand on my own there? Am I still? No, I don’t think I can be that certain. Passionate, convinced, but not certain. This nonconformist not only has a sensitivity to rejection, but a fear of standing alone, and of being wrong.
He didn’t use the word “wrong“, per se, because when it comes to philosophy and ethics, you can’t really, and you can’t prove anyone as being “wrong“, you only really have the majority and what they say to prove your case. But he and his collegues made themselves perfectly clear. No one in this country would support me in my opinion, and as I live in this country, that’s what any respectable and responsible parent/guardian would do. . . in their opinion. And as far as anyone is concerned, their opinion is what counts, as I am not a top professional of this kind in the country, only a parent, for what it’s worth.
I still don’t think he is “right” but he is not “unfair”. I am sure I must conceed. Everything tells me that his arguments are hypocritical. . . but I’m not interested in arguments anymore. I’m done arguing.
Who decides what “right” we have to anything?! He was as much making a decision for her as I was. When it comes down to it, no body has any “right” in this matter anyway, not me, not him, not even HER, as God has all the rights and has made all the decisions already. We simply don’t get a choice. Facts are facts. What right do we have to pretend they aren’t so. Don’t we do a child a disservice in teaching them denial, in teaching them that everything is ok, when it may not be. The line in that sand has a row of ostrich on one side, and me on the other.
But I must learn to quell my passion when it gets shaken up. It would seem that it, the things that it holds to, and I, are “wrong”. And I can’t in all honesty say, swear, that those on the other side of that line are not “right”.
So I went shopping and bought myself a tub of Ben and Jerry’s.
The keener eyed of you will have noticed that I wrote a story last week that I then went on to delete. It wasn’t quite complete and felt a bit too raw to share in such a level of my incomplete description. The problem being that so much of the description lies in the experience, which none of you could ever have had. At least not in exactly the same way, as it’s mine. You didn’t know my family. I’ve put the story back up, but know I may be the only one to undertand it quite.
I get updates from NPR (national public radio) which give me interesting photography stories, high quality news and tips on new music. Yesterday I was sent some links to listen to Moby’s new album. This track struck a chord with me and when I found the video, even more so. The simple line drawn alien conveys more to me about how it feels to be outside of one’s country, one’s culture, and one’s family perhaps more than I could have expressed in writing. Notice that the friends he imagines and draws for himself do not only look like him, but move like him too. He smiles, until they fade away.
I didn’t know a line drawn alien could break my heart.
Difference is good. Difference is important. But understanding is comfortable. And death is so final. I didn’t realise, until recently, that in embracing difference that I would be giving up so much understanding.
I left without realising that I could never go back. And without realising that no one would wait for me to try.
“Put me on the train, send me back to my home
Couldn’t live without you when I tried to roam
Put me by the window, let me see outside
Looking at the places where all my family died”
I stood on the old whitewashed, wooden, wrap around porch with the two squeeky porch swings and the chimes blowing gently in the breeze and felt something well up in my throat. And the ancient general store next door where I used to run my fingers through vats of nails, bolts and washers as a child, as so many generations of children did before me, stood empty with a large “For Sale” sign in the window. The soda fountain, deserted.
The place, the old towering Victorian mansion, I had so often played there as a little girl. Just as I had on the farm accross the river, with the acres of cornfields and rusted, antique machinery, the hummingbird feeder and the stray cats, the dog lead, belonging to collies long dead, lying limp on the gravel.
And the family. The family were always there. The family were always there, and difficult.
The women collecting in the kitchen, to swap gossip, coupons and recipes. The men in the livingroom by the wood fire arguing politics and religion, with a freshly piqued anger that could strip the wood panelling with their curses, determined to win their battles at all costs. When nobody won, the misery of failing health and old age was always a comfortable armchair to retreat to. The children looking for cats and dogs and playing hide and seek in the barn, blissfully unaware of consequences of the battles that were being engaged in in the liiving room. The women pretending that their lives were not engulfed in the wars fought by elderly men and their slightly younger apprentices in these matters, who looked to the faltering wisdom of years to guide them as they clung to their Budweisers and foul mouths for ammunition. The children just accepted and ignored. Until they were older. I left. Most didn’t.
Both places were void of human life on that day that I returned, but the ghosts came in their cavelries to trample the unfaithful heart who had left them so many years before. I never had said good bye. And now there was no one to say good bye to. No one was at home that day, and I stood breathing the memories with dry and silent tears invisible on my cheeks. I held it back, partly for the sake of myself, partly for the sake of the woman who uncomfortably journied with me that day.
I don’t quite know why it overwhelmed me that day, but something happened. Something changed. I think I said good bye.
I had a leaving party before I left on my recent trip. It was kind of a strange thing to do, as I was coming back, and I knew it at the time, but I still felt like I had to do it. I knew that there was a good bye in this trip somewhere, but to feel it so soon, before I had even stepped on a plane, was odd and confusing. It was decisive. It felt as large as the final battle.
I didn’t understand it at the time, and was aware that I was acting strangely to everyone; the party, saying good byes, hugging people, sitting on my own in the park, looking whistfully at the ducks and feeling so sad, like i would never come back. It felt like I was leaving, like the little death that I had to die to come here to begin with. I had a return ticket and my travel plans and knew that realisticly and sensibly, it was rediculous, but still it felt somehow like i was leaving, like what I had done so carelessly before.
I know now that I was just feeling, experiencing, what I was always going there to do, but would not be allowed to express while there. I know now, that I did leave here for the last time, because now I am somehow different.
You see, the first time I left the homeland, I never said good bye. I just got on a plane and left. I never looked back. I convinced myself for practically a generation that it had never exsisted. Now that I’ve been back there and have felt the ghosts, recognised their monuments and paid hommage to their memories, I can no longer deny any part they have in my own history, the part they played in making me.
The soldiers in that war have almost all died. But those places, those battlefields remain. They’re where I came from. And I’ve finally begun to say a propper good bye.
I am trying to teach my daughter about saying sorry. I wonder how it can be such a natural thing for a child to not want to say “i’m sorry”. and for that matter, I wonder at why so many adults have it in their nature to avoid it too.
I wonder at the reluctance, when my own inclination is to say it so often. I have been told, I say it much more than needed. I suppose I want to fix everything, and even though I know that I can’t, I want people to know that if I could, I would.
I’m probably going about it all wrong. Whatever I’m trying to do to teach this little girl about saying ‘sorry’ will probably see her end up in therapy in 20 years time with a guilt complex.
What good is ‘sorry’ anyway? It doesn’t change anything. Perhaps I’m just too cynical now? Why say it anyway? Habit, perhaps? It can’t fix anything or heal anybody or undo what has been done. So why bother?
I guess I just wish it could, so I keep hold of the importance of saying it. While all the time not believing it will do any good.
Sorry for me is a desperate attempt to undo the state of things. Sorry for her is simply the overwhelming and uncomfortable confrontation that the state of things is because of something she did. Is there any kind of healthy balance in between guilt and denial?
haven’t been able to write much today. lots to say, three entries begun, just can’t seem to complete them right now.
I run to where you will not be
Amongst the shelves of poetry
The dusty worn out libraries
That live inside my mind
I’m here but hope you will not see
I hide from you and look for me
Where silence and the voice agree
For once I understand
Have been scouring my old writing books, notepads and journals, and the journey has been facinating. Perhaps I’ll find a starting point? Perhaps I kept them to begin with because I used to think that there was something there worth not throwing out. I’ve thrown so much out.
I don’t mind looking back. Sometimes I find it more hopeful than looking forward.
I was about 18 and as we were both from one of those ‘small towns where nothing ever happens but everybody listens’, for some reason, we often found that sitting in the middle of my street (i mean actually on the street) was as good a place as any to have a long conversation at 3 am. I don’t know why, but then I don’t know why we did half the things that we did when I was 18. There really wasn’t anyplace else to go.
He was the kind of friend who didn’t pull any punches. And neither did I. (I probably still don’t, for that matter) After several hours of him telling me (in the kindest possible of ways) exactly what he thought of me and what my place in the world should be I said “D, is there anything good about me?” (remember, this was a friend. just an honest friend. And I actually liked that about him. You never had to wonder where you stood.)
He thought for about half a minute and replied, “You care. . . You care about things, but you care too much.” And I couldn’t begin to even comprehend what he could possibly mean by that. How could it even be possible to care too much? Is there a “too much”? It bemused, perplexed and stayed with me for 15 years.
However recently, I began to understand, and I now accept his assessment of the character of my former self. Because I am completely aware that it could also describe my current self. I don’t think I’ve really changed that much.
I had a conversation with my husband not long ago. And somewhere in that conversation I remember him concluding that “Unfortunately, you’re a bad kind of combination. You’re a nonconformist who is sensitive to rejection.”
I understood and accepted that assessment of my character from the start. Some things can’t be denied when they’re as plain as the nose on your face. And again I think it all comes down to caring too much. And it has caused me a lot of grief over the years. If I could manage to be a ‘nonconformist who didn’t care’ then I could just get on with doing and saying things that confuse people in a parameter outside of the norms, and being different wouldn’t cause me any bother and I would be perfectly happy.
But I can’t. And I’m still not sure that I’d really want to. I don’t think I’d really want to stop caring. I’ve tried, completely unsuccessfully. Perhaps there’s just a way of doing it better? I don’t know.
We don’t have a large back garden. It’s overgrown, a bog and a mess. It could be worse, but I’m not all that happy for Flower to play there, as there are some very toddler unfriendly bits. But the two parks accross the street may keep me living in this tiny Victorian servants’ house longer than is practical. We often refer to the parks as “our grounds”.
“Would you like to come for a walk around our grounds with me?”
One park has a large duck pond, a playground and an open ground where kids play ball and students have picnics. The other park has botanical gardens, tree covered paths and large open green fields.
I really love these parks. I feel like they’re an extention to my home. It helps that I can practically step out of my front door directly into either of them. It is a wonderful place for Flower to run and play and explore and they are all neatly landscaped, manicured and kept up for me by the pleasure of the city council.
For the past year and a half the Flower Child and I have ventured out together almost every dry day, to the duck pond, or the gardens, or the ‘squirrel walk’. I love the hidden wisteria tree and she loves the hidden paths. This year we have cygnets. At the appropriate times of year she loves to pick daisies and buttercups, or collect pine cones, or chase dry leaves and splash in puddles. She’s a good walker for not even quite being 3 yet.
Currently, a month before her third birthday, she is suddenly becomming more aware of the world around her. Today she was impressed with the ‘big treees’ and said ‘look up! there’s hundreds.’ A couple of weeks ago she discovered her shadow. We had pointed out and explained shadows before, but she actually noticed it for the first time a few weeks ago. Now she is very much attached. she looks back when her shadow is following along behind her on a sunny day and says ‘c’mon shadow!’
and when the sun goes behind a cloud or we walk under a tree she says, worried, ‘where’s shadow gooone?!” So I explain that when we walk in the shade under a tree, shadow goes to meet us in the sunshine on the other side. today as we stepped under a tree into the shade she leaned toward the path, made a kissing sound and said “bye, shadow. see ya LA-ter!” (i wish i could type the vocal intonation.)
I don’t think I’ve had a normal emotion in 12 years. Until now.
Grief is a normal emotion.
Grief is a normal emotion, and this time, I am experiencing it in a different, ‘normal’ way. And I’m finding it very confusing. I don’t know what it’s meant to feel like. I’m not quite sure what to do with these ‘normal’ emotions yet. It’s very new.
As kerensa commented here awhile back, grief looks and acts very much like depression. And, as I have written here before, over the years, I’ve experienced a lot of grief. Now, I’m not claiming that I’ve not been depressed as well (that started 16 years ago, and besides i have an illness that takes chuncks of tissue out of my brain, so something’s got to get muddled up in there along the way), but if you look at those last 12 years, they are peppered with death, loss and ill health.
8+ deaths (including my father and grandmother), 4+ house moves, emigration, several unrenewed job contracts, 5 years of unemployment and application/interview rejections, 2 unfinished degrees/qualifications, diagnosis of chronic, lifelong illness, 3 lengthy hospital stays with following convalescence and housebound times, loss and recovery and loss then recovery again (etc.) of eyesight, walking, speaking etc. . .
I’m not going to go on, but it does. And this isn’t a pity party, and I’m not looking for you all to read that and heap loads of sympathy and kind words and such, i mearly list all that there to make the point that it never stopped! And everytime I began to go through the grief process, for whatever loss I was trying to grieve for, a dr. jumped up and said “You’re depressed! Better give you some pills! We can make these things better now, you know.” Maybe I was meant to be feeling depressed. God knows, I’ve had enough reason to be. Maybe I needed to feel the pain, the denial, the anger, the depression if I was ever going to accept anything about this painful world we live in at all!
Because when I was a child the storybooks told me that everything had a happy ending, and it doesn’t. Because every dr. I’ve ever met has told me to take a pill and I can magically have that happy ending.
It’s a ****** LIE! (sorry, all this grief stuff must be starting off in the ‘anger’ stage. thank you, i’ll try to control my outbursts from here on.)
You see, they have never fixed it, they can’t. I’ve spent 12 years popping various different pills and suffering the consequences and in the last 3 years it litterally ruined me and took something so important away from my daughter, her new mum, any possibility of her having a new mum.
How was I supposed to have normal emotions?! How when the chemicals were quite literally pulling my strings? I do have anger about that. But something tells me that that’s normal. I don’t know anymore. I don’t know what’s ‘normal’. But I think I’m going to try to find out.
I left something behind when I came back from my journey to my homeland last month. I knew when I left on that trip that something would change, and it did. But I have imposed on your time for long enough, so that’s a story for another time. I’ll probably delete or edit this later anyway.
But a few weeks ago, I started to feel like a mother for the very first time. And that feels so good, so normal.
Then R died. Now I’m grieving again. And I’m not sure if what I’m feeling is normal, because I’ve never felt something quite normally. I’m not sure what it’s suposed to feel like. Because there was always a dr. saying ‘well, this isn’t normal, so we’d better fix it.’ Ok, it was painful, but I suspect that it was normal. This time, I’m determined to let it happen, ‘normally’, somehow. No matter what happy ending the doctors try to offer me.
And I feel like I’ve been kicked in the stomach. And I’m trying to understand, and I feel a bit like I did 2 and 1/2 years ago when I had another friend who died, and I grieved and I cried and I felt like I had no right to be grieving so, as I was not as close to him as others were, but I did, I grieved, and I felt guilty back then for doing so. Perhaps I didn’t (and don’t now) so much feel guilty for grieving but instead for not having taken the time to know him then or her now better. And now I will never get that chance.
no. . . i feel/felt guilty for grieving so much.
My friend died last week and something hurts, but at the same time keeps reminding me that we were not close, that I rarely saw her, that we never spoke on the phone, or had a heart to heart or even sent Christmas cards. But I keep thinking of her voice and how comforting it was in a crowd of strangers and how I always thought that she had the most beautiful speaking voice of anyone I ever knew and how I will never hear it again. She had often been a comforting presence to me, and how much pain she had just been through, and how unfair.
I dare not think about her husband, her three children, her newborn son. Yet I try, when I can, to pray for them. I try, but, it’s shaken. What good does prayer do? It couldn’t save my friend. It was never meant to save my friend, but we hoped that it could. We all prayed. Those who knew her, those who never knew her but only cared for someone who cared about her or even cared for someone who cared about someone who cared about her. I Corinthians 12:26 says “if one part [of the body, of Christ] suffers, every part suffers with it.”
I don’t think I ever prayed so hard, for two weeks we all prayed. All over the world, we prayed. Why did we pray? My friend is dead.
Now I look at all of my friends. I look at them and try to be normal, I try not to speak of it because perhaps one is not to mention the unmentionable? I try to be normal with my other friends, because most of them never knew of her, and I don’t really want to speak of it, or anything else really, anyway. I look at all of my friends, but wonder if in two weeks they will be dead too? And that hurts. We never expect this to happen. But it does. The last time I saw her, I did not expect it to be the last time I would ever see her. The last time I saw my other friend who has died, I did not think that it would be the last time. Why did I know them, when now it is done? Why do I know anyone? When will be the last time? Was it today?
And what is death anyway? I know what my faith has taught me. But I don’t understand. Perhaps right now, I don’t believe. Perhaps the question is not, ‘what is death?’ but in the end, ‘what is life?’
It was seven years ago, that in
Looking for that lighthouse near the cafe called The Rock,
In Devon or Cornwall (I always forget
Which it was) I slipped into a silence.
It didn’t just happen, but slowly rose
To my side and took my hand.
Stunned, I didn’t hear when asked to hand
The waitress the leftover cup which, like me, now had nothing in.
And clumsy, not thinking, knocked over the vase of roses,
Felt my heart sink like a rock,
Or like the sound of angry cursing in a room of proper silence.
Those feelings one tries to forget.
And I did forget,
Seven years ago, looking away from the task at hand
I once more took my old friend, Silence,
With me to the water’s edge, hoping that the tide was in,
And at the shore picked up a small rock
To skip across the first wave that rose.
It was then that a new (or was it old?) feeling arose,
Though no sooner than felt I began to forget,
And the earth began to rock,
To crumble like dried petals in the giant’s hand
Bringing forgotten ways of life rushing back to settle in,
Along with memories of the desire for a voice not silenced.
I hadn’t remembered a time before the silence.
The memory went the minute that I rose
To my feet to see the old friend who’d come in.
It had been years since we last spoke and I’ll never forget
How cold it was once again there standing hand in hand,
By the bay at low tide our bare feet on sharp rocks.
But now alone. Alone, and not alone, I ask the sea a question for each rock.
Will I spend my life here, wrapped in this web spun of silence?
Could I still hold my voice with these cold callused hands?
Could silence pierce me like thorns on a rose?
But the sea interrupts, and it begs me “forget,”
Undecided, distracted, I return and walk in.
It was seven years ago, in rock cold silence,
That I rose from my ashes and threw up my hands.
In Devon or Cornwall. . . I always forget.
last week a poet friend sent me an assignment. i mean an actual writing assignment, like the kind you’d be set at school. It wasn’t just to me thankfully, and he was very relaxed about whether or not anyone took up the challenge, so by now he probably assumes that i’m not going to.
thing is i keep thinking about it and mentally composing snippits, but of course when i am not in convenient proximity to pen and paer or laptop.
that never used to be the case, i was never far from a pen or a notebook. i used to write my mind much more than i do now.
Some (most) old journals are self indulgent nonsense and sickly nostalgia and most of them should be burnt. but there are others that retain some worth, others that can remind us of someone who we used to be. . . especially when that was a person who, in many ways, we like better than the reflection we confront in the mirror everyday.
half term week means no playgroup for the Flower Child. this half term week, i’m convinced, exists solely to test my ability to multitask. and whereas since returning from my trip, i have been better, more myself, healthier, calmer, more motivated with slightly more energy and more than a touch more confidence than in so many years, i still think that succeeding with everything i have to do this week is going to be a bit of a stretch of the imagination. (am singing Cbeebies songs with Flower to keep her amused as i type this… how’s that for multi tasking?)
am still processing events from abroad, but i will close that box for now and set it aside until it is more conveniet to sort through the contents.
in this life we make choices. we make choices based on hope. sometimes a hope for something better, sometimes simply hope that we’ve made a good choice. we then live with those choices in whatever way we find ourselves able to do that.
some people never live with their choices. they refuse to and stand against the world in a blockade of denial.
other choices are made for us. in that case we either have to find a way of living with it, or find a way of changing it. otherwise, we get stuck behind the blockade again.
(by the way, Hamlet is my favourite Shakespearian play.)
I want to teach my daughter [how to] to make [good] choices. I also want to give her a way of living with [accepting] the reality of the world that we live in.
they say that the best way to teach children is to model the behaviour.
the first 3-5 years of our lives are the most important for a child’s development. this is the time when our brains and bodies go through the most dramatic changes (the teenage years being the other developmental hotbed of activity). these early years are when patterns are formed in our brains that hardwire (a word i find i use quite a bit recently) us to act in certain ways and expect the world to respond in certain manners.
i believe this is one reason why we are so territorial. i believe this is why we have comfort zones.
many years ago now, i left my comfort zone. there were many reasons, and there were many reasons why i never returned, at least never for good. and now i have a new comfort zone. but that hard wiring in my head, that was forged before i was three, living in another land, still expects things to happen and people to respond in a certain way. particularly the people. they just respond to me differently. and in turn i’m never sure how to interpret.
but when i left, i gave that up. things don’t happen here in my chosenland in that way. the chocolate tastes different here, and it’s good chocolate, but it’s not how i expect it to be.
it’s not the only chocolate. there’s no ‘right’ or ‘wrong’ way for it to taste, as so many people would have me believe.
and i’m starting to relearn that, and have the occasional bar of ‘the other kind’. and that’s ok.
“But when from a long-distant past nothing subsists, after the people are dead, after the things are broken and scattered, taste and smell alone, more fragile but more enduring, more immaterial, more persistent, more faithful, remain poised a long time, like souls, remembering, waiting, hoping, amid the ruins of all the rest, and bear unflinchingly, in the tiny and almost impalpable drop of their essence, the vast structure of recollection.” — Marcel Proust – Rememberance of Things Past
I returned to my homeland to find, to my surprise, that strange things, small things, unimportant things, were suddenly strange, big, important, distant and annoying things to me.
Friendliness. Speaking. I hated being approached in a shop. Something that my chosenland has taught me. We do/should not engage in conversation with others unless we want or need something from them, and therefore should generally avoid making too much contact with the outside. There are people who speak a lot. . . and we’re not meant to like or trust them.
“Hello! Can I help you?” I felt violated.
“Those are two for one today, by the way.” I was certain I would be exploited.
“Isn’t it hot today? I can’t believe these temperatures in April!” No, I’m not going to buy whatever it is you want me to in order to make me cooler!
Why had I become so suspicious, so skittish, so warry, so paranoid, so certain that friendliness was only a mask to cover manipulation? Did I act like this most of the time now? I do. I don’t speak to anyone unless they are ‘approved’, ‘vetted’, ‘ok’. How did did friendliness for friendliness’s sake become “hello my name is… what do you do? weather’s terrible isn’t it? well, mustn’t grumble.” Certain of the worst. And so used to mistrusting people that I even suspect the worst from vetted friends now.
what a way to live.
by the middle of my second week in the homeland, i began to fall easily back into my old way of acting, of being friendly. i began to realise that random conversation was no more than random conversation, and we all have to make it through the day in some way, and being friendly sure beats being stand-offish.
and i began to chat back. no one asked me to buy anything.
“ok, just let me know if you need any help.”
I got chatting to the lady in the candle shop and told her that I was only visiting, told her where I came from and where I live now. More information than some people I’ve known for months or years know. I told her: “I don’t need to have ‘things’ from my home country around my house, I don’t need to speak the language or eat the food. I just want it to smell like home.”
And I do, I realised, I want the smell of hazelnut coffee and scented candles and cinnamon and apples and lilacs and books in the air when I walk through the door. Those smells have more power to strike a chord with my heart than any story or even photographs.
I bought some candles from her. And she never once asked me to.
just wanted to bump up this post, as i was interested to see if there were any further thoughts out there. thanks to chas and smudgie for comments so far.
Here is a tale of the trees in a wood
They were never that pleased on the land that they stood.
So they upped and they walked as far as they could
‘Til they felt the sun shine on their branches.
I was little boy lost, and I was little boy blue
I am little Jack Frost but I am warm through and through
It’s not easy to hide when your heart’s on full view
Oh, tonight, cruel world be forgiving
Oh, for once in my life I am living.
There they did stand and there they did stay
When there came a young boy who was running away
From a mad world, a bad world, a world of decay
And it’s comfort he sought in their branches
I was little boy lost, and I was little boy blue
I am little Jack Frost and but I am warm through and through
It’s not easy to hide when your heart’s on full view
Oh, tonight, cruel world be forgiving
Oh, for once in my life I am living.
There we found love and there we found joy
And the warmth in his heart oh, it filled the young boy
And his friends taught him magic and secrets of old
While the trees kept him safe with their branches.
I was little boy lost, and I was little boy blue
I am little Jack Frost but I am warm through and through
It’s not easy to hide when your heart’s on full view
Oh, tonight cruel world be forgiven
I was little boy lost, and I was little boy blue
I’m little Jack Frost but I am warm through and through
It’s not easy to hide when your heart’s on full view
Oh, tonight, cruel world be forgiving
Oh, for once in my life I am living.
in the field of medical ethics, can i really be in such a complete minority? and does that actually indicate that i’m as wrong as everyone else here seems to think i am? for, when everyone else is actually more qualified than me, do i have a right to differ so strongly in opinion, when it affects more people than just me? but if i do what everyone else is wanting me to do and i don’t feel that it is really the right thing to do, then am i wrong to do it because i’ve not followed my strong gut feelings, or am i right to do it because i’ve followed the opinion of the more qualified majority?
when in the end, it’s not really my decision anyway, i just have to come to a decision to put to the person making the decision which may or may not affect his decision.
well, i’ve been back in the homeland for nearly two weeks now. it has been the most overwhelming trip, and i will need some time alone before i can attempt to think about or describe it. i will return to the chosen land in just a couple days now, and it will be interesting to see what ‘changes’ (in how many ways) may come about because of my time here.
memory can be difficult to understand or explain, but let me tell you, it’s palpable to experience.
had one of those evenings tonight where i felt like i had a lot to say. i had about 3 people to write lengthy e-mails to, several phone calls to make and a blog that hasn’t been updated for awhile. i didn’t have much to do, so could aford the time in front of the laptop. and to make things even better, i saw the orthoptist today who gave me a prism lens to corect my double vision (which has been absolutely fantastic, by the way) and consequently, i can read the words on the screen without struggle for once. have been thinking and mulling over a million thoughts it seems, which in one way has been nice, as i don’t always have my capacity for thought completely intact it sometimes seems, but in another way could probably use curbing, just a little bit at least, as it means that i’m not sleeping so well again.
but anyway, the whole point is. . . somehow, i didn’t manage to do it. i wrote one e-mail, but accidentally deleted it, started a longer blog entry, then got stuck thinking about it and couldn’t finish. i didn’t attempt the phone. so i wrote this quickly before going to bed, for no apparant reason really.
that was because i learned at a young age how to pick up on what other people were saying. in case they were saying it about me. because most often, they were.
i would sit in assemblies with my vision turned forward toward the stage and whoever was speaking to us, and my ears focussed backwards towards whoever was sitting in the chairs behind me whispering about me. making fun of my clothes or hair or about how they were glad they didn’t have to sit next to me or talking about who they would invite to their new secret club. . . making sure to say ‘but NOT sienna, OUR club is only for cool people.” whenever there was a birthday party, more often than not, i would not be invited, though the invitations were always handed out right under my nose. there was a girl called A who would rally the troups at the playground. they would sit on top of the climbing frame and look down on the world around them (both literally and figuatively) and she would say “now, who should we make fun of today? oh look! there’s sienna!”
the school counsellor was even called in by a teacher. she pulled me out of class one day and tried to ask me what all the problems were about. i really didn’t have anything to tell her, because i really didn’t know. then she called all the other girls out of class for another meeting without me. to talk…about me. then she had a third meeting with all of us involved, obviously creating a big unhelpful ‘us and them’ situation. (or more accurtately ‘me and them’)
one of the girls even said “maybe it’s because she doesn’t go to church. maybe if she came along with one of our families we’d be able to get along better” well, isn’t that rich?! bullied becasue i didn’t go to church!
so i developed my ears. in a way it was a defense mechanism, but in another way it was a pretty useless one, as there wasn’t really anything i could actually do about it. i supose i always would rather know what accusations were being brought against me than to live in blissful ignorance.
so we all grew up, like all children do, and we all moved on, like all human beings have to, and along with maturity some of those girls are now stil very good friends. (believe it or not, i’ve even had the odd appology as an adult!)
but i’m still pretty paranoid about being left out of a party. and i promise you. . . i still have very good ears!
so why after 8 weeks of self injecting 3 times a week with very little problem at all (big step for this needle phobe!), am i starting to freak out about it and go through the whole old panic routine? maybe the mass of black and blue flesh that i’m accumulating might have something to do with it? maybe the increase in dose and flu symptoms might have something to do with it? maybe having done it for three weeks without the auto-injector pen might have something to do with it (which means it doesn’t hurt so much for the few hours after, but hurts more when the needle goes in)? maybe it has something to do with getting tired of having to plan my life around always being a bit sore and achey?
maybe i’m just tired of it?
maybe i’m just getting too used to the chocolate and it’s losing it motivational effect? perhaps i shouldn’t keep the entire box of lindor on my bedside table?
at least it was broken for a short while. i broke it and passed it on to someone else to fix, which admidtedly was a fairly irresponsible thing to do, not gluing up after myself and all. but i was young, and young people do this. you’ve probably done it too. it’s not an unusual occurance of the human condition.
there was nothing acrimonious about it. i didn’t throw it accross the floor at him, or at least that was never my intention to do so. it was just that, well, like i said, we were young. and people do this. people learn in childhood how to do jigsaws, and by the time we are young adults we generally have a pretty good idea which pieces fit and which ones don’t. we try some pieces, but of course sometimes they simply don’t fit.
So as life moves on, in time we all try to arrange ourselves into the chaotic jigsaw we call ‘life’, and generally we try to stay near to the other pieces that fit. pieces that fit into us, and us into them. and we generally lose track of those that never fit. all friends and lovers work this way, or at least i believe them to. even friendships sometimes don’t fit, always through all time, and we lose track.
we may not want to, but we do. and sometimes it makes me sad. along with jigsaws when i was a child, i was read books and was taught that all stories have a happy ending. in my childhood world, you could break someone’s heart, and if you said sorry and picked up the pieces and glued them back together, everybody could be friends and happy again.
and of course we know, that simply isn’t true. not every story does have a happy ending and everytime i am reminded of that it makes me a little sad, because that isn’t how i wanted my world to be.
i am returning to my home country next month for a visit. for the first time in nearly five years. I thought I would get to see him again for the first time in about 12 years, and maybe even say sorry, and i never meant to, and have a coffee and a laugh and a lets all be friends and happy because we’re not young and foolish anymore and we’ve found the right jigsaw pieces that fit together and we don’t have to worry anymore and isn’t it nice to be all grown up and everything (which i know, is an ironic thing to say to end such a childish and fantastical picture).
but i won’t get to. i found out this morning that he gets shipped out to afghanistan the day before i arrive. and i was a little sad.
i was actually pleased with my last photography assignment. of course the difference came in just doing what i do, rather than trying to create unnatural situations to meet someone else’s brief.
– NO mummy
– no mummy today (usually acompanied by shoving me away)
– no [whatever it is i want her to do] today
– it’s MINE
– i WON (usually coming after declaring NO to something or a tantrum)
– daddy daddy daddy daddy daddy daddy daddy daddy daddy daddy [with adoring worshipful gaze towards him usually said after declaring 'no mummy today' with a shove]
things i love when my daughter says:
– pick – YOU – UP [with arms upstretched] (this is most often a declaration of her feeling a bit vulnerable and wanting reassurance that i’m there for her)
– i did it!
– mummy mummy mummy mummy (this always comes in conjunction with the ‘daddy daddy’ phrase, but whereas the daddy daddy phrase mostly stands alone as a declaration of preferance and as such is unwelcome, the two parental phrases combined are a welcome occasional acknowledgement that the three of us make a whole. . . it doesn’t happen often, but i love it when it’s there)
and most of all:
– luff you. (i don’t think she quite understands what it means yet, but she’ll only ever say it in response to me if she’s in a happy mood, so i think she’s getting the idea that whatever ‘luff’ is, is a good thing.)
i sit down for a rest and there is a knock on the bedroom door. Suddenly the door pushes open and a presence enters the room. I am greeted in the friendliest of manners, but with slight annoyance that I did not respond sooner to the request to open the door. The presence jumps up on the bed next to me, lies down with a meow and starts to purr.
I envy her. Though she is no stranger to anxiety and the experience of being a tad ‘high strung’, right now she is the most peaceful creature in the world.
My thoughts turn to jobs, careers, money, disabilities, benefits, mortgages, recessions, goals, health, Flower, attachement, tantrums, creativity, success and failure, rights and wrongs, acceptance and rejections, friends and less than friends, beginnings and ends. . . all at once. I don’t know that Minerva (the cat) does not have any of these concerns (well, ok, I’m pretty sure she doesn’t have a mortgage, but I wouldn’t like to comment on her feelings of acceptance or failure within her feline social structures), but I doubt that she would be sleeping so peacefully if she did.
Learning from experience would be so much easier if we were always dealing with the same rule book in life, if the rules didn’t change so much. If there ever was a rule book to begin with. Which there never has been. If it all just went “ok, x didn’t work last time, I tried it again and it still didn’t work, so this time I’ll do z instead. Sorted!”
In fact that’s what I had determined myself to do. Then x came back, tapped me on the shoulder and said, “hello, wanna try again?”
You see, I don’t really. But I haven’t actually got any better alternative at the moment, and z is evading my grasp for the time being and if i don’t give x a go again, well, then I’m just stuck in limbo.
a lot of people have asked me over the years if i can swim. i usually tell them ‘no’. but to be fair, isn’t swimming simply the oposite of drowning? who said anything about being a gold medalist? i can dog paddle with the best of them. i’m particularaly good at treadding water. you know, not drowning in one place. keeping your head above water, even if only just. yeah, i can do that, and if doing that is the oposite of drowning, and the oposite of drowing is swimming, then, ok, i can swim.
i guess that kind of works (in a round about kind of way) both in the literal and figurative senses. i never claimed to be a gold medalist at this whole life thing, but i’m pretty damn good at keeping my head from going under, at least not for too long. that’s not to say, it never goes under, it just never stays under for long enough to kill me. at least not yet.
but like i said, when people ask you if you can swim, i’ve never heard them qualify that by saying “no, i meant ‘are you a fantastic swimmer?’ ”
So, this whole life thing. . . no, i’m not fastastic at it. but i’ve not completely drowned yet.
“You have been my friend. That in itself is a tremendous thing. I wove my webs for you because I liked you. After all, what’s a life, anyway? We’re born, we live a little while, we die. A spider’s life can’t help being something of a mess, with all this trapping and eating flies. By helping you, perhaps I was trying to lift up my life a trifle. Heaven knows anyone’s life can stand a little of that.” — E.B. White (from Charlotte’s Web)
I’ve always found the cross a difficult story to relate to. It is meant to be the centre of my faith, and it is, but . . . how do I relate to it. How could I? It feels so distant from anything I’ve ever known. And the whole idea of sacrifice is one I find dificult anyway. I think in all honesty, most people would say that they do. Accepting sacrifice, understanding sacrifice, and especially understanding sacrifice as a way to redemption. Most of the time I find it more overwhelming than freeing.
Redemption is something I have thought about a lot over this past year – redemption and how could it be possible, especially when it seems so far away, redemption and can i even think to hope of it, redemption and longing for it. Redemption and losing faith in it. I don’t just mean redemption in a spiritual sense, but a real physical, everyday, reach out and touch it sense. I’m one of those Christians who stubbornly can’t let go of the whole “we believe in life before death” concept. I just find it difficult to experience.
It’s usually me standing at the foot of the cross, and not understanding, being too human, too logical, too hurting right now to see anything further reaching. It’s me who can’t accept that this is all for everyone’s own good, especially mine. It’s me who finds it hard to cope with the messyness of it all. I’m the one left saying “But where is he?” and when they answer “He’s on the cross.” I’m the one who is left finding the sacrifice difficult to accept. I know that’s not what he meant for, but . . . I’m too shortsighted, too anxious, too human.
“. . . This was unexpected,
What do I do now?
Could we start again please?
I’ve been very hopeful, so far.
Now for the first time, I think we’re going wrong.
Hurry up and tell me,
This is just a dream.
Oh could we start again please?
I think you’ve made your point now.
You’ve even gone a bit too far to get the message home.
Before it gets too frightening,
We ought to call a vote,
So could we start again please?”
“No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing. At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. . .”
C. S. Lewis begins his notebook on grief this way. He wrote these journals on the subject, not as a detatched academic exercise, but as a way of helping him to cope after his wife’s death from cancer. I read this small book for the first time the year I was diagnosed with MS. It wasn’t a person who had died in my life, but my own life and future as I had always imagined it, as I had always planned and hoped for it. So I grieved, I reordered my expectations, I found new hope for a different kind of future, whatever that might be, and I came to some kind of acceptance. I was ready to face a different kind of future. “Your will be done”. I trusted that back then. I trusted that His will, was a good one. I hadn’t made enough mistakes to have been discouraged yet.
I didn’t relise that grief, once accepted, does not always stay accepted. What I mean is not that the original grief becomes ‘unaccepted’ once again, but that the original grief will always change a bit every so often, a day, a month, a year, or whatever, so that the new grief must go through the same process as the first one did in order to come to the same acceptance of it. That’s pretty exhausting.
For example, when my father died, I grieved, I went through the stages, I came to acceptance. But that grief changed. My loss of my father was a different loss when I was 21, newly married and an immigrant in a new country than it is today when I’m more than a decade older and I know he will never sit in the living room of my house playing with his grand-daughter. I didn’t have those things yet, so I did not experience the loss of him not being a part of them. But now I do have them, and his absence is made real in a way that it could not have been the first time I grieved for him. Does that mean that I must go through the whole grief process again each time something new comes into my life for him to not be a part of?
And what about MS? I might have been able to appropriately grieve for my future as I had imagined it when I was 20, but now must I go through the list of more concrete things to wrestle with? So today I may grieve for the mountains I will never climb (both physical and symbolic), but when I come to accept that and my body changes, deteriorates, further yet again, must I then grieve tomorrow for the roads I will never walk the length of, and then the day after that for the things I will never see at all? Wouldn’t it be nice if we could get it all over and done with and grieved for in one go, complete and totally accepted? Perhaps those of stronger faith have been able to do that. Perhaps that is how I was able to accept things so much faster in the past? I was younger, more trusting?
But I’ve been collecting my losses over the years, and have never been quite sure what to do with them. They haven’t spaced themselves out so neatly and tidily as to allow me to confront them one by one, and I’m tired and a bit short tempered with it all.
And what about faith in the midst of it all? Yes, I know it is there, but right now (and much of the time) I am more likely to relate to what Lewis says near the beginning of his book “Talk to me about the truth of religion and I’ll listen gladly. Talk to me about the duty of religion and I’ll listen submissively. But don’t come talking to me about the consolations of religion or I shall suspect that you don’t understand.”
I doubt Lewis had any intention as he wrote of ever having his thoughts published (I still haven’t decided about this post). How could he be so brutally honest if he had ever considered sharing his thoughts with the rest of the world? How could anyone not remain academically detached in order to speak publicly of such things (I am being candid now, because I doubt that I will hit the ‘publish’ button)? Honesty with the rest of the world is difficult. Honesty reminds us that God is there and knows our shame, our shame at being human, anyway. We know that he knows us completely, but it (our grief, our deeds, our shame, our failings, our humanity) still somehow remains private and even a fiction until we share it. Perhaps that’s why we write these confounded blogs. Somehow, though we must believe He is not, God always seems to remain stuck there in our heads. Somehow, though we are aware that we only need confession to Him and Him alone, it never really becomes real until our darkest wrestlings are made public. Until we are made public, and forgiven and loved. (Yes, I am aware this doesn’t stand up theologically, but on a different level, perhaps it does emotionally?) Perhaps that is why He didn’t stop at Adam and made all of these other people as well, even though, on the whole it made things so much more complicated and messy. Perhaps in order to grieve, to accept and to return to joy, one must find and recognise and trust where God’s Spirit walks on earth now. One must remove him from the cofines of our own heads?
I don’t know. I’m only writing a notebook. Just like C. S. Lewis. And tomorrow perhaps I won’t be lost in my head anymore because perhaps I will have indeed hit ‘publish’ and told you. and perhaps I won’t because I will realise that one way or the other, ‘this too shall pass’ and it probably doesn’t matter anyway because something else will happen to take the place of these thinkings.
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Words are sticking in my fingers this evening. And a lump forms out of the weight of everything that I am trying to carry on my own, rising from the middle of my chest to my throat. . . and stops there. Stifling.
