Mel asked me the other day about what it actually felt like trying to get my left arm and leg to move again. I found it quite hard to describe, and it struck me what a very peculiar thing it must seem to those who haven’t experienced it, so I thought I’d try to write about the process.
I should start by saying that all strokes are different and mine is in no way typical: though I lost all movement on my left side, I mostly retained sensation – my foot was, in fact, the only area in which feeling disappeared. And while I had a few auditory and sensory oddities, I was lucky in that the stroke did not affect my linguistic abilities, block out my visual field, alter my personality, or injure areas of the brain involved in planning and volition. I can only imagine how much harder the work of physical recovery is made by any of these eventualities. I am also lucky that my post-stroke experience is not painful (well not in conventional terms anyway). My limbs are often stiff and uncomfortable; sometimes they judder uncontrollably (a common neurological symptom) and, because it is weak and lacks control, my hip joint has an unfortunate tendency to slip in and out of place, but, my body doesn’t actually hurt . Again, I can only imagine how much more difficult learning to move again would be if the process was coupled with pain management.
Probably the easiest way to describe recovery from stroke paralysis is to think of something you physically cannot do (for example, to roll your tongue if you are a non-tongue roller), and then try rolling your tongue over and over again, hour after hour, day after day. Now imagine that your non-rolling tongue is a paralysed arm or leg. You are thinking about this thing that your body cannot do; but are you thinking about it correctly? Are your thoughts the right ones, the thoughts that will finally inspire your brain to make a connection and force the limb to move? Until you actually see a flicker of movement – until there is that tiny sign that the limb isn’t just completely dead – the process is incredibly dispiriting. But you have to just stick at it, and couple your thinking efforts with showing the brain what it actually needs to do. For example, when working on my arm, I would think very hard about reaching up for something; perform that action a few times with my “good” arm; then Tom or one of my physios would move the “bad” arm in the same way, while I tried to move it with them. It also helped if the arm had something to aim for. For example, my parents brought a massive tub of haribo sweeties to the hospital (I have a disturbing fondness for those foamy fake fried eggs). Tom would hold the egg out of reach, while I tried to get the left arm to move to grab it. Eventually, I found my fingers making a grabbing motion like the pincers of a lobster in response to my instruction to reach for the egg. Bingo! Once my brain had “found” this pincer action, I discovered I could use it to make the limb to do other things. So though I found it impossible to make the arm reach up by itself, if I pumped my hand back and forth in a lobster-like fashion, I could force it to judder unsteadily upward in search of a sweetie. In this manner, I consumed a lot of fried eggs!
I described the brain “finding” the paralysed limb and being “found” is really what it feels like: a sort of physical equivalent of something quite common and mundane – like remembering where you left your keys or recalling precisely when you heard that tune before.
But this physical act of finding is not, at first, consistent or reliable: in the same way that you might have to repeatedly probe your faltering memory for the recollection of that tune, you have to constantly remind your brain exactly what it needs to do to reach for something or to put it down. And in my case, this act of “finding” a new movement in the paralysed limb was often accompanied by a strange sensation: the kind of thing you feel when a roller coaster is about to plummet downward, or a lift starts moving unexpectedly. In other words, I felt an unpleasant loss of physical control – as if something were being done to my body – which is interesting, since what was happening was precisely the opposite (ie, my brain and body were both regaining control.)
After the eureka phase of “finding” a particular action, comes the long and tricky work of physical “learning”. And this learning phase is really hard: remember that recovery after neurological damage is not a question of movement coming back but of the brain figuring out everything again from scratch. Effectively, my brain has had to re-invent my left arm and leg (no wonder I am bloody knackered!)
So the difficulty of the learning process is increased because the simplest of gestures – things you don’t even think about in everyday life – no longer make any sense to the brain. An apparently straightforward left-handed action like using a fork is, when you think about it, incredibly complex: your fingers have to position themselves around the fork in a particular way; your hand must be held at a precise angle to successfully spear a mouthful of food, then your wrist (weak and unreliable post-stroke) has to raise and turn in order to lift the fork to your mouth. Mealtimes, in the weeks immediately following the stroke, were very weird. I knew I had to use the fork , so I watched how my fellow patients went about it and tried to imitate them. My first efforts were as clumsy and unsteady as an infant’s. It was impossible (and amusing) trying to spear or scoop up vegetables. I persevered, but when I failed and tried to transfer the fork to my right hand in order to eat, my left, white-knuckled from its efforts, remained gripping the fork and refusing to let go. I had to mentally shout “DROP IT” before the hand would finally obey.
If you want to have an inkling of what this not-making-physical-sense feels like, try this : sit on the edge of a chair, lift your right foot off the floor a little, and rotate it from the knee in a clockwise direction. Now, at the same time, put your right arm in front of you and try to rotate it in an anti-clockwise direction (as if polishing a table). Hard, isn’t it? Tom came up with this analogy and it seems a good one to me: the particular combination of coordinated movements seems to be something the brain simply cannot make sense of – but that’s not to say that with practice the brain wouldn’t eventually figure out how to do it, and that one day you might well be able to rotate your right arm and leg in opposite directions. This making-sense-out-of-what-seems to-make-no-sense is what physical recovery from brain injury seems to be about to me. My hands were constantly coming up against things that they just didn’t know how to do (plait hair, hold a knitting needle, use a fish-slice), and, more irritatingly would often seem to want do things of their own accord (much as your arm wants to rotate the same way as your leg in Tom’s example). Physical effort in one part of my body would inspire weird jolts and movements in another; the hand or leg would fire off in a random direction, or try to join in with what another limb was doing. This, when you experience it, is not only extremely annoying, but heightens that already uncomfortable feeling that one no longer has any physical control. But I have come to realise that these random movements are also obviously part of the brain just figuring out how to do stuff again and they do seem to go away with time and re-training. But even now, if I bounce a ball with one hand, the other will spontaneously join in.
Another example: it has taken me almost five months to teach my left arm to swing back and forth when walking. This is something that everybody does, and that you wouldn’t necessarily think of as a learned action, but when the brain has lost the part that used to control the arm, and has to rewire it all over again, all the arm’s “natural” movements become “acquired.” When I began to walk, the reciprocal movements of my left arm with my right foot seemed bewildering and nonsensical. It made my head spin when I tried to do it, and so my arm would just give up and hang limply at my side. So Tom walked with me while holding my hand, and, after I’d got into my stride, he would start to swing my arm forward for me every time I made a step. From there I progressed to constantly telling the arm to swing as I walked along, mentally shouting “MOVE” at it every time my right foot took a step. The resultant exaggerated swing was similar to that of a soldier in a communist regime, but a few months down the line, these constant instructions have clearly done the trick. Now my left arm swings naturally as I walk; I no longer have to instruct it to MOVE; and the only time it looks limp or droopy is when I am exhausted.
The “finding” and “learning” process of recovery is ongoing and with my leg and foot there’s still a very long way to go (you’ll note that everything I’ve written here has been about my arm: this is because the physical function of my leg is still very patchy, many of its movements remain puzzlingly incomprehensible, and I’m still at the “finding” stage with my toes and ankle). Rehabilitation is incredibly hard, unbelievably tiring, but often fascinating, and it has completely changed my understanding of my body, the relationship between the mental and the physical, and, by extension the way I look at selfhood itself. Back when I was a student in the ’90s, many fashionable theories of THE BODY abounded, and I remember writing pretentious essays in which I railed against the old Cartesian dualisms, dismissed the brain as being of no material importance, and hymned the praises of physical Sensation and Desire. But I am now of the opinion that Descartes probably had something there: my body is just something that my brain has invented. Bloody hell!
Unless one is a philosopher or psychiatrist, one does not have to reflect on what the brain is actually, physically doing until a part of it goes seriously wrong. Watching it figure things out again, and reflecting on its processes and behaviour at first-hand is both enlightening and remarkable. Indeed, the realisation that the brain can re-wire and re-model itself is so damned incredible that I wonder if this is what is behind that strange vein of megalomanical optimism that seems characteristic of many accounts of brain-injury recovery, like that of Jill Bolte-Taylor. (I hope that if I start sounding like that, you will all stop and tell me). So while I certainly don’t think that I am all-powerful because my brain has re-fashioned my body and got itself a whole new bag of neurological tricks, it is true to say that I am pretty much constantly wowed by what my limbs can now do. I find myself standing over the stove and thinking “just look at that hand! Check it out making an omelette! IT CAN MAKE AN OMELETTE!”
And while my hand now feels like it is “mine” again, it is still to me a miraculous gift – a brand new limb that my brain has just made up because I told it to (now do you see what I mean about the megalomanical stuff?) I suppose when it stops feeling like that – when I start taking it and my brain for granted again , I can think of both as being ‘recovered.’ And that’s something else to look forward to.