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.

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. . . )

So I slowly, gently, gradually peak my head out from behind the the wide, old oak tree that I’ve been trying to hide behind (it is all there, if you look for it) and glance across the way to the little pool of water in the distance where the others are splashing and playing.

Maybe if I just creep over and dip my little toe in and see if it’s too cold and whether or not jumping right in would hurt too much or shock my system into a regression?

brr

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.

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.

Words are sticking in my fingers this evening. And a lump forms out of the weight of everything that I am trying to carry on my own, rising from the middle of my chest to my throat. . . and stops there. Stifling.

These are the images that I am told can make great poetry, great photographs, great music. But I am not enough of an artist to bring forth any riches there.

So I sit and stare at the blank page, writing wordless poetry. Only feeling, not articulating, the verse pouring out of a locked up chamber, too full to be still, yet silent, by consequence and necessity.

Tonight I’m thinking about going back on my word. I thought about it last night, and for several nights before that. I’ve been thinking about it for quite some time now, and I hate that. I think about it, then can’t face it, then can’t face anything else, then can’t face it again. I’m thinking about breaking my word about going someplace I vowed never to go again. And how do I live with myself if I do? I’ve always seen myself as someone who keeps her word, who learns from her mistakes. How do I expect any of you to live with me if I sell out? How when I’ve learned that I will regret it, at least eventually, but what else can I do when I haven’t learned a better way to allow me to avoid it?

I guess if I do, then I won’t have to live with myself anymore. . . because I won’t quite be me anymore either. I’ll be something a bit different, perhaps a bit less human, something a bit flatter. But, as someone once told me, the last time I wrestled with this angel and/or demon, ‘Perhaps that’s just a sacrifice you’ll have to make.’ I guess it’s better than the alternative(s). (??)

I’m not very good at self sacrifice, especially when it involves compromising my principles. I know you wouldn’t see it that way if I was able to tell you more, dear reader, but it feels that way to me, right now. It probably won’t after I do it. If I do do it.

help.

I lied to my doctor yesterday.

It was necessary for the sake of self preservation.

A brief and probably inaccurate summary might go something like this (inaccurate because my perception of what goes on around me and my ability to engage and communicate with other people, both personal and professional, is currently greatly hampered by cognitive problems caused by my MS):

me: I think the chest infection is back, the cough is worse, it keeps me awake at night, I’ve had it for about seven weeks now and when it starts I can’t breathe and I can’t stop coughing because my throat goes into spasm. I feel ill and tired and my throat hurts. Everything is a bit unpleasant and green.

he: When I saw you last week, you were looking a bit anxious, and today you seem a bit low and depressed. We really need to look at things as a whole, and perhaps consider a different kind of treatment.

me: Well, the other day, I was bringing my daughter for her injections, so of course I was a bit anxious. I don’t think I’m any more depressed than usual at the moment, and I absolutely refuse to go back on antidepressants!

he: Well, then we can look at other options.

me: I already have a therapist, since 2007, and am very happy with her. Can we get back to looking at my cough?

Ok, that’s not exactly how it went, except for the bit where I said that I wasn’t depressed and refused to go back on medication.

Well, the second part of that is true, so therefore I needed the first assertion to facilitate my refusal.

I just so often get the feeling that I am no longer seen to have any illness or bug or problem that isn’t directly connected to having MS or depression. And whereas I will be the first advocate of the wholistic “mind and body are intrinsically linked” approach to medicine, and ok, to be fair, his assessment of my mood was fairly accurate, but I would like to shake off the labels and expectations sometimes. Give me a chance. Ok, I might have a history of depression. . . but I’m sure I can have a simple bug too. I wish they would stop trying to shove pills down my throat!

Yes, it’s time to hibernate. Hibernate, eat, hide and drink mulled red wine. And besides, mulled wine doesn’t count towards your weekly allowed alcohol units. . . does it?

The fact that I have written so little as of late (both on and offline) is evidence to this fact (the hibernation, not the alcohol units). Long nights, evening skies at noon, cold rain and wet, rotting leaves. I find December difficult and Thanksgiving to Christmas a bit teary. And I guess also this year getting flu (probably Swine flu) which turned into chest infection (bronchitis/pneumonia – was actually a bit frightening at times. One gets attached to the act of breathing.), and not getting treated quickly enough hasn’t helped my usual “happy go lucky” general life attitude. (HEY! No heckling in the back there!)

I came down with it was the day after my vaccinations, so therefore I only assumed it was a side effect of the jabs and didn’t get checked until I really was in a bit of bother, which delayed my treatment for the infection.

I love antibiotics. No really, I do. I’ve been on them almost 10 times this year, and I always just feel safer once they’re in my system. I guess having a damaged immune system can be a bit scary at times, especially when you just can’t seem to fight something off. So an “immune system in a pill” is a great idea, I think (even taking into consideration my usual reaction against all things tablet shaped!).

My cat is ill, my mom is too far away, my husband is travelling, and my friends must all want to be hibernating as well.

I’m in a bit of a resentful, self pitying, “i love you, go away” slump just right now and I am sorry. I’m sorry both to you, Reader, and to those who must encounter me in the everyday, that I am a bit of a “little black rain cloud” at the moment. I am trying, I promise. I’ve just got my head down and mostly trying to direct as much of my tunnel vision and non existent energy as I can at the Flower Child, who has been such a star while mummy has been ill.

(aside: toddler tip for ill mums: create a small gentle set of “duvet games” with your little one. Hide and Seek works well. They will love hearing “where’s Flower gone?!” until you flip back the duvet and exclaim “There she is!”, and it allows you to be vaguely horizontal for as many minutes as you can squeeze out of it. Hide and seek with toy animals works well too. Also the game “the one who moves first looses” is a good one. Anyway, it worked for us.)

I can’t see how to shift this fatigue or cough or lassitude or blue mood for the foreseeable future, and Christmas has always been a tough time for me anyway (at least since coming here from there).

So please show some forbearance with me, and I’ll try to at least act vaguely positive. Maybe by next week, at least.

Oo. And I mustn’t forget to get some ice cream.

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 to 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 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 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.

I’ve had insomnia since I was 18. It’s been much better this past year, but worse in the mornings lately, and so this morning. I’ve been waking up at sometime between 3.30 and 4.30, lying awake worrying about my role in all of the calamaties of the universe until about 6.45, then falling asleep and being woken up by the alarm at 7, then lying in bed, sometimes falling back to sleep again until 8 or 8.15, by which time, I really should have been awake.

Anyway, in one of those falling asleep bits this morning I dreamed bitty dreams. I don’t often dream. It takes deep sleep to dream, which I don’t often manage. But usually when I have a dream, it’s longish, and with some kind of scenerio, as I assume most people’s dream’s are. But this morning, I just remember seeing my mother who pointed and said, more or less,

“Act your age! You’re not 3, you’re 33!”

And that was it. I woke up and needed a cup of tea.

But she’s right, you know? And I think it sunk in. I’ll try harder, mom. . . and the rest of you. Sorry.

I don’t think I’ve had a normal emotion in 12 years. Until now.

Grief is a normal emotion.

Grief is a normal emotion, and this time, I am experiencing it in a different, ‘normal’ way. And I’m finding it very confusing. I don’t know what it’s meant to feel like. I’m not quite sure what to do with these ‘normal’ emotions yet. It’s very new.

As kerensa commented here awhile back, grief looks and acts very much like depression. And, as I have written here before, over the years, I’ve experienced a lot of grief. Now, I’m not claiming that I’ve not been depressed as well (that started 16 years ago, and besides i have an illness that takes chuncks of tissue out of my brain, so something’s got to get muddled up in there along the way), but if you look at those last 12 years, they are peppered with death, loss and ill health.

8+ deaths (including my father and grandmother), 4+ house moves, emigration, several unrenewed job contracts, 5 years of unemployment and application/interview rejections, 2 unfinished degrees/qualifications, diagnosis of chronic, lifelong illness, 3 lengthy hospital stays with following convalescence and housebound times, loss and recovery and loss then recovery again (etc.) of eyesight, walking, speaking etc. . .

I’m not going to go on, but it does. And this isn’t a pity party, and I’m not looking for you all to read that and heap loads of sympathy and kind words and such, i mearly list all that there to make the point that it never stopped! And everytime I began to go through the grief process, for whatever loss I was trying to grieve for, a dr. jumped up and said “You’re depressed! Better give you some pills! We can make these things better now, you know.” Maybe I was meant to be feeling depressed. God knows, I’ve had enough reason to be. Maybe I needed to feel the pain, the denial, the anger, the depression if I was ever going to accept anything about this painful world we live in at all!

Because when I was a child the storybooks told me that everything had a happy ending, and it doesn’t. Because every dr. I’ve ever met has told me to take a pill and I can magically have that happy ending.

It’s a ****** LIE! (sorry, all this grief stuff must be starting off in the ‘anger’ stage. thank you, i’ll try to control my outbursts from here on.)

You see, they have never fixed it, they can’t. I’ve spent 12 years popping various different pills and suffering the consequences and in the last 3 years it litterally ruined me and took something so important away from my daughter, her new mum, any possibility of her having a new mum.

How was I supposed to have normal emotions?! How when the chemicals were quite literally pulling my strings? I do have anger about that. But something tells me that that’s normal. I don’t know anymore. I don’t know what’s ‘normal’. But I think I’m going to try to find out.

I left something behind when I came back from my journey to my homeland last month. I knew when I left on that trip that something would change, and it did. But I have imposed on your time for long enough, so that’s a story for another time. I’ll probably delete or edit this later anyway.

But a few weeks ago, I started to feel like a mother for the very first time. And that feels so good, so normal.

Then R died. Now I’m grieving again. And I’m not sure if what I’m feeling is normal, because I’ve never felt something quite normally. I’m not sure what it’s suposed to feel like. Because there was always a dr. saying ‘well, this isn’t normal, so we’d better fix it.’ Ok, it was painful, but I suspect that it was normal. This time, I’m determined to let it happen, ‘normally’, somehow. No matter what happy ending the doctors try to offer me.