the last burnt sienna crayon

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.

And then. . .

. . . The joy of life.

Day 3, injection 3

oops.

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.

Tomorrow I must face the inevitable.

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.

Everything’s changed now, anyway.

Today was confusing.

Today I talked.

A lot.

I was nodded at.

A lot.

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.

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’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.

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?

today i made an upopular decision. a decision which i felt imediately ailienated me from and lost the respect of one of the most powerful people in my life. . . my neurologist.

he told me i was wrong, but he had to support me in my decision. there was no argument or forcing of hands. he simply told me that my decision was dangerous, may as well have called me reckless. he blinded me with science and looked disappointed. he was obviously not expecting me to have a case so prepared and to be so unshakeable, so set, so decided in oposition to his recommendation and his statistics. i don’t really blame him, as statistically my decision was dangerous, but i just felt it was right. he possibly felt threatened and ceased to make eye contact with me, choosing to address husband instead.

that felt bad. and now i’m doubting myself and my insistance to flout an immensely more experienced professional than my little self. i feel small and arrogant and vulnerable. for so long now i have been so convinced in so many situations that i have known what is best for me, that the object of the game has been to stand ground rather than be led. but where has that got me, but most often a lot of pain and difficulty, and why should i know so much better now? the experience has left me feeling unsure, vulnerable and more than a little disempowered, when yesterday things seemed so clear.

disempowered, not because i didn’t stand my ground to make my decision and get what i wanted in the end, because i did, but disempowered becuase now i’ve been made to doubt myself and my decision so much that i have lost the confidence i had in my decision and reasoning to begin with and now feel a bit stupid, indeed a bit reckless, and honestly a bit scared. i have lost that confidence which occasionally something somewhere indicates must still be there in me, somewhere deep in the labyrinth of hidden perspective, but that currently eludes me.

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…