the last burnt sienna crayon

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.

I am still learning how to be patient.

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.

And then. . .

. . . The joy of life.

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. . .

. . . wasn’t it?

(to be continued. . . )

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.

(to be continued. . . )

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.

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?

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.

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?

I rely on people. Often.

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.

If I had my life to live over again, I wish:

• I had flown home for Grandma’s funeral
• I had flown home before the family house was sold
• I had flown home more often
• I had never tried to do many things
• I had never tried and failed to do many things
• I hadn’t allowed myself to be manipulated so frequently
• I hadn’t been so naive whilst thinking that I wasn’t
• I had tried more illegal drugs and steered right clear of the legal ones
• I had never left the job at the Uni, no matter how ill I was going to get
• I hadn’t been so over confident that I would get another one
• I had been more patient
• I had shown more forbearance
• I had had more fortitude
• [edit]
• I had waited a bit longer to buy property
• I had gone to more gigs and fewer protests/lobbies
• I hadn’t said some things and that I had said some other things
• I hadn’t kept some friends and that I had kept others better
• I hadn’t kept so much
• I hadn’t lost so much
• I hadn’t forgotten so much
• I had had more fun
• I hadn’t been so serious
• I had loved better
• I had valued better
• I had studied better
• I had managed money better
• I had travelled more
• I had practiced my more music
• I had worried less
• I had drunk less
• I had argued less
• I were less ambitious
• I were more content with not getting what I want
• I were more thoughtful
• I were more grateful
• I were more graceful
• I had been more gracious
• I had broken more learned behaviours
• I hadn’t changed
• I had changed
• I hadn’t grown so cynical
• I had read more books
• I had been a better Christian
• I had been a better mother
• I had been a better wife
• I had been a better friend
• I hadn’t thrown so many pearls to so many pigs

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.

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. . .

. . . to stop trying so hard.

At least for a few minutes, anyway.

it’s a strange thing.

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.

It will be good to meet you all. . . again.

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.

“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.”

t.s. eliot

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.

But I’m tired.

I feel your pain.

No, actually, I do.

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.

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.

my friend lies dying in a hospital bed, 3 weeks after giving birth to her 3rd son.

and i’m finding it hard to care about much else.

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.

(incidentally, that’s a metaphor.)

i have a friend who used to call me “radar ears”.

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!