affirming


I have to confess that I was rather nervous about my Dublin trip beforehand. It was the first time I’ve been away on my own since my stroke and, though I feel embarrassed to admit it, this was the source of some trepidation. While I am perfectly happy pottering about alone in my locale, every time I am in an unfamiliar public space, I am produced all over again as a person with a brain injury. In public spaces, one becomes hyper-conscious of the annoying slowness and awkwardness of one’s body, and the difficulty of one’s brain in coping with a confusing range of stimuli. There is an awful lot to do (manage bags, negotiate doorways, steps, and other people’s bodies) and there is an awful lot to take in (lighting, background noise, different voices, spoken and written information). Before my stroke I was a person with an able body and brain, and, though I didn’t think of myself as such, I was intrepid, fearless, energetic. Now I am a person whose brain is quickly exhausted by auditory/ visual stimuli, and who also has a few minor disabilities. All these things accrue into a feeling of intense vulnerability in public spaces. One of the worst things about a stroke, it seems to me, is the way in which it can undermine one’s confidence and sense of independence. But I value my independence immensely, and, 18 months after my stroke, it was time to give things a go in Dublin. Was I going to be OK?

Of course I was. I travelled on planes, trams, buses, and taxis. I got myself to and from a hotel. I walked about the streets of an unfamiliar city. I pottered around the sights and shops just like I used to.


(I am still becoming accustomed to this camera, which is lighter and much easier to carry than my heavy canon).

I am not saying it was all a breeze, because it wasn’t. But things were made infinitely more breezy because of the lovely folk at This is Knit. I immediately felt not just welcome, but completely at home.

After you walk through the door and meet Jacqui and Lisa, it doesn’t take very long to spot that This is Knit is the very best kind of yarn store – one that acts as the supportive focus of a whole knitterly community. I got to meet that community at a special event – their annual yarn tasting!

This is the loft before:

and after:

Everyone settled down to enjoy some tasty yarn

I had a great evening, and even managed to say a few words to the assembled throng (this was another significant first for me, since I’ve not spoken in public since my stroke). It felt important that I was able to thank the knitters who made my blanket. It was amazing to spend time with them – they really are a lovely bunch of women.

Another highlight of the evening was getting to meet Carol Feller, whose designs I’ve long admired. Carol was launching her new book — Contemporary Irish Knits (of which more another time).


(With a little help from Eimar, Carol demonstrates Kilorglin’s neat and ingenious construction)

I am sure everyone who was at the yarn tasting enjoyed themselves in their own way, but for me it was an incredibly affirming occasion. Not only was I taking a significant step towards regaining my independence, but it was the first time I’d attended an ‘event’ of any kind as the designing, writing, post-stroke me. It felt quite momentous and was, at times very moving to meet people who read my words and knit my sweaters. It also means a lot that I was able to do this among a group of people that I really like, and know that I will see again. So a massive, affirming THANKYOU to Lisa, Jacqui, Siobhán, Elana, Roseanne, Karen, Keiko, Eimar . . .


. . . and, of course, José.

limbo

Now, I don’t want to moan, but this space is somewhere where I like to be honest about my experience of recovery, so, to be frank, things are a bit rubbish at the moment.

1. We’d planned a short break this week on Barra and Harris, but one of Calmac’s ferries broke down; they cancelled our sailings, so no Hebrides for us. Boo.

2. With just a few days notice, the hospital have moved the date of my heart procedure back to the end of the month. I had mentally prepared myself for this to be happening very soon, and it seems strange now that it is not. Indeed, I feel rather at a loss for what I should do mentally: put it to the back of my mind? Remain in this weird state of expectant limbo for a further fortnight? I had also made plans for several happy things that were to happen after the op, and these have now been disrupted.

3. According to the government, I am not disabled. This seems rather odd, since I find it hard to walk, cannot lift or carry, need Tom to help me in and out of the shower, and spend entire days poleaxed with fatigue. I was paralysed by a stroke five months ago; my entire time is taken up with rehabilitation and rest; and my GP has declared me currently “unfit”. But apparently none of this equates to disability in the eyes of the current administration. To explain: after I was discharged from hospital, my care team instructed me to apply for DLA, as it is the key to certain government services I now need, such as return to work assistance. DLA is not a benefit – it is not related to income, and is not means tested. It is there for those whose mobility or mental health means that they need certain kinds of help or care. Someone like myself, whose mobility problems have meant we’ve had to adapt the bathroom, buy a new bed, and incur considerable travel costs as I am unable to walk or cart myself about to rehab, would normally be considered eligible for the lower level of DLA, which would also enable access to aforementioned government services. But not in the brave new world of Cleggatron’s big fookin society.

This is not about money. It is about being disabled. At the moment, I am a disabled person. Anyone who has read what I’ve written here since February will know that I am trying my utmost not to be, but unfortunately, right now, I am. I do not intend to be a burden on the state. I am not claiming, nor shall I ever claim any government “benefits.” I am not the Tory Press’s mythical nemesis, sitting on my arse all day, draining the public purse. But there are certain services – specifically those which are going to help my transition back into the workplace – for which I should be recognised as a disabled person. Now I know that I am a disabled person, but the government does not recognise me as one. So what am I, then? My reaction to this news about my identity and social status has been extremely complicated. I hope the academics among you will excuse me when I sum it up as a sort of reversal or failure of Althusserian interpellation.

Filling in the sixty pages of that berloody DLA form was a thoroughly humiliating and evil experience. I would say, with the exception of actually having the stroke, its the worst thing I’ve been through. Actually, I take that back — the worst thing is that, after the grueling task of listing and quantifying in insane detail all the things I unfortunately cannot do, I then receive a letter from the government that effectively says that I must have been lying, because actually, I can do them. This is how the government go about telling you that you are not, in fact, a disabled person.

“From a seated position, you can prepare a main meal for one person.” (gee, thanks. Would you like to see just how hard it is for me to bend down to get into the cupboards or oven? And pray tell me, how does one sit down to use a stove designed for upright human beings?)
“You can carry a laden tray to and from the kitchen” (with this arm? can I? would you like to see me try?)
“Outdoors, without assistance, you can walk X hundred metres” (unfortunately, there are days when I can’t even haul my ass from room to room)

Right now I cannot face what an appeal involves – effectively going cap in hand to that clueless wanker at the DWP explaining, “sorry, guv, actually I am disabled.” I imagine this is probably the case for many people in my situation and that the hideous process of being recognised as a person with a disability is simply too much for them to go through. It is certainly too much for me.

Apologies for this extremely ranty post, and for frequent reference to state apparatuses which readers from other nations will no doubt find inexplicable. I hope you do not feel that I am griping, or asking for sympathy, or insisting on government hand-outs or anything. I am not. I am a proud, and very independent sort of person who would simply like to be recognised as someone who currently has a disability. I’ve been unsure whether or not I should mention any of this here – but I am so berloody angry, and have been so brought down by the whole thing that, short of turning this space entirely silent, it would be impossible to hide. And, as I said, I am trying to write honestly about what recovery from stroke involves for me, so it would be wrong of me to disguise how I am feeling, out here, in ideological limbo.

new limbs

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.

if you are interested. . .

. . .in what recovering from a brain injury is really like for someone of working age like me, go and read this excellent article by Tim Lusher in today’s Guardian. It provides a very telling account of the effects of vertigo and fatigue, attitudes toward visible and invisible disabilities in the workplace, and the particular challenges of recovery when no-one can ever really tell you how much better you are going to get. It spoke very powerfully to me. Thanks, Tilly and Julia, for the link.

invisible metaphors

I have been thinking a lot this week about what is invisible. If you looked at me now, what you would see was myself, looking (I hope) pretty much as I did before all this happened, save for a stick; a wonky leg and some sadly uncoordinating footwear. What you perhaps wouldn’t be aware of are the host of less visible and tricky-to-deal-with symptoms that mean that the stroke and its effects are always present to me. I am troubled by dizziness and vertigo pretty much constantly; my body feels uncomfortable most of the time; it takes tremendous effort and concentration simply to remain upright; and performing small everyday tasks induces a fatigue that is crippling and all-consuming. I think about these things a lot not just because they are really annoying but because I am, here in the hospital, surrounded by people who all carry about their own very different invisible things. I encounter a cheery person in a wheelchair, but what I don’t see is her double vision, her loss of spatial awareness, the trouble she has finding words, or the daily difficulties she faces dealing with the loss of bowel and bladder control. And the problem is compounded by the fact that all these symptoms and feelings are not just invisible, but often seem beyond language. In the attempt to describe and get at what’s going on inside — to make the invisible visible — we reach for different kinds of tropes and figures. I’ve recently become very aware of some of these. For example, I notice that I roll out my own stock set of similes when I am asked to describe how I feel: in the days before the stroke I felt like a coiled spring; the stroke itself was like a gun going off in my head; the effort of my damaged brain trying to “find” an inaccessible muscle feels as though I’m on a roller coaster. I first used these figures entirely unconsciously, but then started to realise that that they all relate to machines and contrivances. In their reference to mechanical volition, these tropes are perhaps a way of suggesting how inhuman and dissociating I find my recent experiences — how much the stroke is not me.

Through talking to other people with brain injuries, I have noticed just how many metaphors describing the invisible parts of their experience involve dissociation or separation: dividing one’s sense of essential you-ness from what is emphatically not you. For example, I have a pal at the exercise class who, when he is having a bad day, mentions the misbehaving “beasties” in his head. I had a good chat with my friend about his “beasties” and what his account first put me in mind of was an episode of Spongebob Squarepants where evil Plankton, in an effort to steal the prized Krabby Patty recipe, takes control of Spongebob’s brain. Much hilarity from Spongebob’s altered behaviour ensues, but the recipe remains elusive.

I then also remembered The Numskulls, who I was intrigued and not a little troubled by when I was a kid. Beezer readers will recall that the Numskulls were tiny folk who inhabited the head of “our man”, controlling all his neurological functions and behaviour. Failures in communication between “our man” and his numskulls were the source of much of the surreal mild “humour” that characterised that comic in the late ’70s and early ’80s. . .

I think that what bothered me about the Numskulls was much same thing that terrified me about the original version of the Invasion of the Body Snatchers when I first saw it as a child: the loss of free will and one’s identity being subsumed by forces that are not you, but are nonetheless inside your head. This is very much how my friend with the misbehaving “beasties” feels: it is as if his head is full of malicious presences who are willfully impeding his speech and his cognition. The trope of being colonised does not in any way capture his interior experience, but it is nonetheless a very powerful way of expressing it. I think that this feeling of one’s identity being invaded, usurped, or controlled is probably the most hideous and frightening of the invisible effects of brain injury (at least it seems so from where I’m standing). To me, it raises very tricky philosophical as well as neurological questions: can the injured brain become integral to one’s sense of self? Is there a “new” you post injury, or is recovery really about restoring the “old” you? Are there ways (or perhaps metaphors) of dealing with those invisible feelings of dissociation and the loss of control that are better or more helpful than others?


(beware the beanpods!)

For a few days immediately following the stroke, I experienced things in much the same way as my friend does now: as if I were being invaded or controlled by an alien thing. Though I was always fully aware of what was going on (and was often very scared of it) I felt as if my mind had been emptied out or blanked. I couldn’t concentrate on anything at all — even looking at a fashion magazine was impossibly stressful — and it seemed as if there were something inside me blocking the movement of my thoughts and ideas. I was also a little prone to what the neuropsychologists call “inappropriate behaviour” — in my case laughing uproriously at things that weren’t funny. It may sound odd, but at the time it really helped me to think about these things in figurative terms as possession or colonisation. Separating the invisible symptoms from my own sense of self, and describing them through metaphor as being caused by an exterior force or agency, meant that I could hold on to the idea of what my identity should look like. What is really interesting to me, however, is that, as time has gone on my attitude to my own numskulls (or what I have described here as monkeys) has radically changed. It may sound daft, but I think that figuratively visualising my own brain-monkeys has helped me to adjust to the stroke as a process to work with rather than a thing to be fought against. I hesitate to tell you this, but I regard the monkeys as essentially benign presences. I often envisage them and sometimes even address them (though, you will be glad to hear, not out loud). I imagine them toiling along with me during my exercises and working away while I rest and sleep, rerouting my damaged neural pathways. They are a little unpredictable, and perhaps a bit confused right now, but I think that, fundamentally, they are really smart monkeys, and that they will figure it all out eventually.

I have only just started to think about these issues: I am sure they are discussed in the writing of Oliver Sacks and that of Jill Bolte Taylor who I have yet to read (I am really looking forward to Bolte Taylor, but the experience of stroke is so raw to me right now that I confess I am a little afraid of reading about other people actually having one). I’ve also been put in mind of Elaine Scarry’s groundbreaking Body in Pain which I read a long time ago and which (to my mind) knocks the socks off anything written by Susan Sontag on the topic of the body and figurative language. I’m always grateful for your recommendations, and if you know of good books and essays to read about describing mental or bodily experience through metaphor, please do share them and I shall chase them up as I explore this topic further.

In other news:
I am getting out and going home. Hurrah! More on this later!

hares and tortoises

This is the design that I was working on five weeks ago, and that I was actually carrying with me in my bag when I had the stroke: a wee sweater in shades of natural Shetland, inspired by Aesop’s fable of the Tortoise and the Hare. I’ve been thinking a lot about this project, and about how appropriate it seems in my present situation. You will recall that the hare, (loud, over-confident, thinking it knows best), rushes ahead, tires, naps, and loses the race, whereas the tortoise, (slow, steadfast, assiduous) takes its time and wins. At the moment, I am trying very hard indeed to be the tortoise but unfortunately my personality is such that the hare often prevails.

Regarding my left arm, the hare in me feels that nothing is happening : I still cannot shrug my shoulders, nudge someone, or do the funky chicken. The tortoise keeps trying to remind me that each day the hair plaiting is just a little easier, and that it is brilliant I can knit and write at all, yet from time to time, the hare dominates in its obsession with these pointless and impossible gestures. And the hare often comes into play where walking is concerned. So impatient was I to get up and motor about by any means, that I’ve actually spent several weeks reinforcing some terrible physical habits, despite my physios’ best efforts. The situation is such that I must now expend my energy undoing the pernicious work of the hare through a more careful, focused and tortoise-like approach to mobility.

Last weekend, you may remember, I was walking with a springy toe-up leg brace and no other support. Yet my gait was, apparently, terrible: I accomplished a step by swinging my left leg out sideways from my hip, launching it forward by hoisting my whole trunk, and planting the leg, plank-like, a yard out in front of my right one. I could certainly move (and at surprising speed) but I was neither using or stimulating the correct muscles. I would clearly have ended up with a terrible limp and an award from the ministry of silly walks if I had carried on like that. This week, I went back to moving about slowly, supported by frames and sticks, and the physios have spent hours trying me out with different splints and braces –devices that do not keep my knee stiff as a board, and which encourage me to use the muscles that I can. Annoyingly, at the moment, there are not many of these to call on: the front of the hip and the quad both work a little, and this is good. However, the gigantic muscle inside my left arse cheek is not playing at all; nor is the hamstring, and there is not a single flicker of activity yet below the knee. I spend a lot of time trying to get my brain to “identify” the muscles that operate in various ways through moving the right leg, and to apply the same identification methods when attempting to move the left. The whole process is really difficult, tiring, and, indeed, often painful. But despite this, I enjoy my physio, look forward to it, and, when I’m on my own or with Tom, run through my exercises several times a day. The tortoise knows that it is important to work its hardest at those exercises that are the hardest, even though the hare only wants to perform those that it can already do well.

From the hare’s perspective, I have spent seven days going backwards. Last weekend, I moved independently and at speed: now I move hesitantly, slowly, while leaning on an elbow crutch. I will be honest and say that I am at times very frustrated with the tortoise’s approach: it is, quite simply, much more difficult trying to inch forward with muscles that cannot move, than it is to heave oneself about through the power of those that can. The deft and nimble hare also finds itself annoyed by the heavy hunk of meat that my left leg has now become. Teaching the left hand to move again was a very different matter. One could work hard at part of a gesture before accomplishing the whole, and every day brought the rewards of a visibly increased dexterity. But while a hand makes small and detailed movements, a leg makes giant, crude ones. I seem to spend an awful lot of time breaking down the components of a step, and working on those components in isolation. Yet, despite this focus on detail, in some ways the only way to take a step is to actually take one. And once a step is taken, those component movements seem to get lost in the continuum of motion itself. I hope I’m explaining this clearly: put simply, I find working on gait really hard because I can neither see nor feel whether the muscles are working or not, and because moving my leg also involves lumbering a whole heavy body about, rather than (as with the hand) developing a detailed and relatively independent action.

So I am working steadily like a tortoise and am, for the most part, maintaining the tortoise’s measured attitude to mobility. I take heart from the small improvements that I see, but, in the background, the impatient hare is becoming a little frustrated and frankly bored with what seems to it to be no progress at all. And, I am sorry to report that the know-it-all hare is also becoming bored with other aspects of its institutional recovery.

Now, I am not usually someone who bores easily: I can generally find something diverting in most activities or objects. Like many knitters, for example, I generally think of a long journey not as a hideous stretch of empty time but as a happy opportunity for more knitting. I have also found that, in many non-knitting-related contexts, knitting has nonetheless proved useful in its simple lessons of patience and forbearance. But despite these knitterly, or, perhaps, tortoise-like aspects of my personality, I am now really very bored indeed of medical professionals introducing themselves by asking me where I am, what the month and date is, and the time of day. Happily, folks, I am not confused. I am also exceedingly bored of the puzzles. To explain: two weeks after I had the stroke, I was introduced to the puzzles by a pleasant neuropsychologist who, in his dusty office, assessed my ability to draw a clock and geometric shapes of two and three dimensions. I had to name as many animals as I could in a minute, remember long lists of unconnected objects, count in multiples of seven, and identify the men I had “seen before” from a surreally brylcreemed line-up of 1950s faces. I rather enjoyed my time with this neuropsychologist, and was very happy to receive a clean bill of cognitive and communicative health. Despite this, since moving to my new institution, I spend disproportionate amounts of time puzzling it up to the max. Now, I understand that a key element of the rehabilitation programme is to assess each patient fully to ascertain which parts of the brain have or have not been injured. Believe me, myself and my brain are extremely grateful for the thorough nature of this system. The approach is, however, rather one-size-fits-all and, at its worst, also tends to heighten the sensation of being alienated and patronised that one already feels as a patient in an institution. I fear that my perhaps hare-like and certainly rather snippy academic nature means that I have limited tolerance for the puzzles: their quality, their sheer quantity, and their seemingly endless repetition. It has taken me five days of puzzling to complete the (to me) inane tasks that comprise the Chessington Neurological Assessment Battery — a Kafkaesque series of “tests” that build to the tortuous and pointless activity of constructing an unuseable coat hanger. I am dubious of the efficacy of any system that uses averages based on age range as a test of the patient’s ability, whether or not said test is forty years old and much of its equipment and activities arcane. Surely a more appropriate and accurate test of function would be to assess the patient against their abilities before they had a stroke? But perhaps (unlike, say, making a cup of tea), this is difficult to do with things cognitively associated. In any case, as I spend the precious free parts of my day reading, writing, and following Estonian knitting charts, I feel reasonably confident that my cognitive skills are pretty much at the level they were before all of this happened, and that this would be quite obvious to anyone who might happen to be passing.

All of this is, as I say, symptomatic of a perhaps unpleasantly hare-like attitude to certain aspects of rehabilitation, and I do not want to appear ungrateful. I am, indeed, extremely grateful for the combined professional efforts that are being put into making me well, and more beholden than I can really express to the good old NHS. Comments from Wendy and others about the comparative theraputic situation in the US has reinforced for me just how lucky I am to be where I am. But I wouldn’t be me if I didn’t gripe just a little about having to move more coloured blocks about or being asked to name yet another asparagus spear or pyramid; about the stool chart that is pinned to the bottom of my bed, or the part of my “care plan” that reads “Continent. Goal: to remain at this level.”


© Eleanor Grosch

In my opinion, some of these hare-like qualities are indispensable in helping one to maintain a sense of control, identity and basic reality in what is a very unreal situation. The impatience characteristic of the hare can also be useful if it can be channeled and transformed into determination. But I think that frustration and boredom are generally pretty useless. In this context, they simply heighten the sense of being disempowered, which is never a good thing. One can really achieve a pleasant, zen-like calmness when one is working like the tortoise. With the slow, steady, and measured approach, one can take one’s time, one step at a time, thinking about stages in the process rather than the impossible hurdle, the bigger end in view. Yet while all of us, I imagine, find the tortoise a much more appealing figure, we may also admire the hare’s unrestrained energy and vim. I know that I do, and I would like to bring just a little of that vim to the long, tortoise-like labours that are still ahead of me. And I certainly have to retain the hare’s propensity to snooze.

Follow

Get every new post delivered to your Inbox.

Join 6,204 other followers