the last burnt sienna crayon

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.

“I am but mad north-north-west: when the wind is southerly I know a hawk from a handsaw”

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 tried to run away once.

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

I get the urge for going but I never seem to go.

“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”

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.

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.

So why did I post that poem?

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.”

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. . .

“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.

“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.

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.

“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 sit back and take a sip of my glass of merlot, click onto my favourite live radio stream from back home and look at the scattered mess of papers, books, laundry, phones, plates, camera lenses and blister packs of various tablets. i didn’t use to be this disorganised or this much a mess. the fatigue has hit an all time high (or is it low?) this year.

i relise now that i’m listening to the seemingly endless pleadings of a public radio fundraising drive, though the promise of it giving way to music is ever present yet never delivering. i switch it off

this is my first weekend completely alone since the Flower Child came to me in January. She and her dad have gone to Granny and BawPaw’s for the weekend leaving me to my own devices. my own devices tonight include a tub of ben and jerry’s, a laptop and the aforementioned glass of wine. yes, it sounds both decadant and pathetic at the same time, and to me as well. actually, the weekend also includes a trip to London and a trip to be seen by a private Dr who seems to be the only person in this country who will stick his neck out to perscribe a treatment that has been FDA approved since the mid 80s in America. . . but being British, we like our tick boxes. if a treatment doesn’t cost much, drug companies won’t fund research because there’s nothing in it for them or their stakeholders. if there’s no research, there’s no NICE approval. no NICE approval, no treatment.

the treatment i’m after (low dose naltrexone) has few side effects, has reams of anicdotal evidence (foul words in the NHS) is well known and an an approved treatment for MS in America and an approved treatment at higher doseages for other, unrelated problems in the UK. so the lack of British run drug trials doesn’t really concern me. my GP has even told me that if I can get the first perscription from this Dr. and I do well on it, she’ll perscribe it for me herself. but as it is, she won’t touch it with a 10 foot barge pole.

seeing the Dr. tomorrow may not be wrong, or risky, or even illegal. . . but it does feel nicely rebellious.

i keep telling myself not to get my hopes up. i keep telling myself not to focus on false hopes or the last three years of progression. i keep trying to remind myself that i accepted all of this a long time ago and that i finished that cycle of grieving and what’s the point of going back there now? but this isn’t a static disability. everyday i wake up to the same demands but with a continually fluctuating (and mostly waning) set of resources. you don’t usually notice the progression until one day you wake up to a lightning bolt. usually it starts with a memory, something you once did, places you used to go, things that used to be a part of you but are no longer. now when your friends go hiking, you sit in the pub with a book and wait for them to meet you afterwards. now when you go shopping you take the car into town rather than walk. you haven’t sat on a bike or walked a dog in years. now you hold books and letters closer to your eyes to read, and that’s just occasionally when the words aren’t moving all over the place. you can’t put your finger on it, but you feel different, older than you think you should feel. tired and weary and fatigued.

and you suddenly realise in that lightning bolt of memory. . . . . . it didn’t use to be like this.

i promise i’ll never be one who wastes her life waiting for ‘the cure’ that the majority of the MS community hangs their hat on. i’ll never adopt the old Society slogan of ‘Fight MS’ (i always said it would only mean fighting myself). but every now and then. . . someone breathes the hope of getting something back, just a little bit, and i guess i’m willing to take the risk of being disappointed. . . again.

the cat starts to scratch the wicker basket in the corner. i click the radio stream back on and thankfully hear music. jeff buckley sings cohen hauntingly to bring me back to myself and the mess of my bedroom. i pull myself back together, stop remembering or imagining or hoping, and start to gather together the laundry.

baby i’ve been here before
i’ve seen this room and i’ve walked this floor
i used to live alone before i knew you
i’ve seen your flag on the marble arch
but love is not a victory march
it’s a cold and it’s a broken hallelujah

hallelujah…