Hello, dear friends,
here I am, checking in with an update on my progress.
I am doing really well, and throwing myself into the physio with gusto, but it is fair to say that what I am now engaged upon is the strangest and most difficult task I have ever undertaken. When I wrote a couple of weeks ago that movement was beginning to “return” to my left hand, I had no sense of what the stroke had done to my motor function. I thought that all that was required for my limbs’ recovery was for the movement to “come back.” But movement does not “come back” at all: rather, what returns – inching slowly, by degrees-, is the basic capability of movement. The stroke has completely wiped the memory map of my left side from my brain and it now has to learn the simplest actions from scratch. Thirty-six years of walking, waving, eating, washing, and all other unconscious gestures were erased from my limbs in an instant when I fell over on the way to work three weeks ago. So while the arm and hand are moving again in a halting sort of fashion, they have entirely “forgotten” their everyday movements. The hand finds it difficult to lie naturally at my side, and either balls itself up into an annoying claw, or rises up into the air in a disturbing, spontaneous gesture that resembles a fascist salute. Sometimes my brain will “tell” the hand to move, and it obliges, but moments later I find it floating uselessly in the air awaiting further instruction. The most mundane of tasks have become completely mystifying. It took me days to be able to successfully instruct the hand to just drop a piece of rubbish in the bin. And, after several defeated attempts, I had to watch Tom’s two hands working together to ball up a pair of socks before this sequence of deft movements made any sense to me at all.
At times, it really is as if my arm and hand are someone else’s. Emptied of a lifetime’s experience of familiar movement, they no longer seem like mine. And it is really, really hard making them seem like mine again. Because there is no muscule tone or oomph on the left side, my body is uncomfortable pretty much constantly. It requires a ludicrous amount of effort for me simply to sit upright and maintain my balance. But I am focusing all the energy I possess on making that effort. Basically, all of my time is spent attempting to throw shapes, and eating and sleeping enough inbetween times to throw those shapes again. I sleep and eat an awful lot, and I throw an awful lot of shapes. My physios are brilliant, and so (of course) is Tom, who, every evening, runs through my full exercise gamut, encouraging and helping me, and making me laugh. It is amusing to us that it is the most “fun” (and possibly the most useless) arm and hand shapes that are proving impossible to execute. For example, despite repeated daily attempts, I cannot master the simple bilateral movement that would make my elbows flap up and down like a chicken (think birdy dance) or make both arms go round and round as if imitating a train.
I have put an unbelievable amount of effort this week into teaching myself some basic fine finger movements and here I am finally typing – very slowly and stutteringly, but typing nonetheless – with both hands. And even better (O joy of joys!) I have actually managed to cast on and knit a little. If you knit “English” as I do, you probably think that your right hand does all the throwing work, and that the left does nothing but steady the needles. But this is not the case. To execute a single stitch successfully, the left hand must play its part with its own series of tiny but crucial accompanying movements. Working 8 rows of messy bramble stitch almost made my head explode and required a cake and a revivifying nap. I shall never think of “P3tog” in the same way again. But I have cracked it now, and am determined to be churning out colourwork in no time.
One thing I am finding very frustrating is not being able to plait my own hair. For me, this is a singularly identity-reconfirming task. At the moment, I have to ask a nurse or care worker to do it for me every day. Now I can wash and dress myself sucessfully (albeit very slowly), my hair is one of my last traces of physical dependency, and it is very annoying. I hate having to ask, and I hate not being able to do it myself. A few days ago a care worker who was plaiting my hair said to me that perhaps I should think about wearing it in a different, less labour-intensive manner. Now, it may seem ridiculous, but those plaits are integral to my sense of self. Regaining control over my hair, in precisely the way I like to wear it, is an important stage toward being me again, and I shall not change the way my hair is styled simply because a part of my body currently finds it difficult to style it. (None of this, by the way, is meant as a criticism of this particular individual or of any of the staff on ward 31, who are tremendously encouraging, supportive and enlivening presences. But I’m sure you realise that some of the interactions between the giving and the receiving of care are quite complex and difficult, and that things are sometimes seen differently from a patient’s point of view). I’ve tried plaiting every day this week, using a mirror, watching other people, working with these strands of wool, and yet styling my hair myself is still, at the moment, weirdly impossible. I think there are a few reasons for this: first, unlike knitting, it is something I do entirely unconsciously without thinking about technique; second, one doesn’t usually watch one’s own hands when plaiting, which makes it harder to learn again; and finally, because the process requires a heavy arm to be held aloft, the elbow to be bent up next to the head, and the wrist and hands to be moving all the while, it is something that is really very difficult to accomplish. This combination of actions just seems too tricky at the moment for an unruly limb with little strength or co-ordination. But , I am practising hard, as you can see.
Despite inevitable impediments and setbacks, beginning to learn these basic things is interesting and rewarding. I am focusing on actions not as discrete things, but as processes and combinations of movements. The realisation of the mutual reliance of my two hands upon one another for the smallest thing is a startling, eye opening one. One appreciates and understands the use of a fork, the ease of a buckle, in a totally new way. And each day there is some small improvement, some thing that I can do that I could not do before. Three days ago, I put on a pair of tights for the first time. Two days ago, I managed to force my unwilling foot in it’s brace into a shoe. And now I have learnt to knit again. I can’t tell you how excited and overwhelmed and moved I am by the process of teaching myself these things. It is quite ridiculous how thrilling it can be to simply pull up a zip again. Despite the intense difficulty and frustration, then, there is something amazingly reconfirming about finally figuring something out, and doing it slightly better each time. In a very basic way, it really makes one feel as if anything is possible or within reach. And it is very thought provoking, as I say. These small actions and processes are parts of a complex physical language. A gesture integrates itself into one’s physical vocabulary in just the same way as a word works its way into one’s everyday lexicon. And, just like a word, once a movement has become part of that vocabulary, one forgets about its subtle inferences and meanings. One just starts to move again, without thinking. And then today’s small miracle becomes tomorrow’s unconscious gesture.
You have no idea how very heartening it has been for me to read your encouraging and caring comments. It really has made a tremendous difference to my energy and focus to know that you are thinking of me and willing me on. When I reach the bottom of the emotional roller coaster (which happens more than you might think) I see another comment which raises my spirits. Some of you have kindly asked if you might send me a a card. Next week I hope to be moved from ward 31 to a residential rehab place (the sort of place where all one does is physio and OT– brilliant!) so I will certainly let you know where I am when I get there.
cheers, everyone. Onward and upward. x