edited to add: if this is being read by Colin, the piping cabbie with a penchant for fairisle, the remarks that follow do not apply to you!
It has been a tough few days. After the windmill walk, I really was totally whacked and spent several days resting and doing very little. As well as being physically exhausted, I confess that during that time I also became rather tired of just being disabled. I imagine this is a common feeling, and one familiar to anyone in this or a similar situation. Overall, its not been a bad week: I spent a lovely afternoon in the Botanics with a friend and I managed to read a few books (this is progress) but there were certainly some low points. Tom had booked opera tickets for our nominal anniversary. Being among a tightly packed crowd of the opera-going Edinburgh bourgeoisie was sheer hell, and there was also an incident during the interval in which a woman was incredibly discourteous. This rather upset me, and I was also bothered by being physically uncomfortable during the performance. My foot was giving me jip; my leg kept seizing up and my neck and shoulders were in agony. This is run of the mill sort of stuff: theatre seats are unpleasant to sit in, people are just eejits, and, at the best of times, I’m not that fond of crowds. But the experience came at the end of a week in which I’d been allowing myself to become frustrated by everything: my limited choices of clothes and footwear; planning out each day around potential nap times; having to ditch something I’d been knitting for several days because of a dye-lot issue; the annoyance of not being able to reach up or down for things, get things out of cupboards, or put them back again; the fact that I am so damn tired most of the time that I can’t do very much at all. And last Wednesday, I was taking my daily turn around the park when I was filled with an overwhelming urge to break into a run. The urge in itself is perhaps a positive sign, but my inability to put it into action felt sort of terrible.
I have also been troubled this week by the fact that, as a young person who has suffered a major stroke, I appear to be inhabiting a sort of a script. The script is one which I do not actually feel myself to be acting out, but which the rest of the world assumes I am performing. I can read the script on the faces of taxi drivers when they ask what has happened to me, or on those of the adolescents who watch the way I walk in the park. According to the script, having a stroke at 36 is a tragedy, and I am now a tragic person. I have to take a cab to my physio appointments twice a week, and the encounters with the different drivers are very interesting. After the palaver of getting me and my leg into the car, the driver always asks what happened (expecting me, I think, to have a story about a broken leg or ankle). Now, I am quite used to the idea of having had a stroke, and it bothers me not a jot to talk about it, but other people’s reaction to the information can be peculiar and unpredictable. One cabbie immediately closed down the conversation by telling me he wished he hadn’t asked; another apparently dour and hardened chap actually wiped away a tear. Whatever the particular nature of their reaction, every bloke is terribly shocked by the news that I – a young woman – have suffered something that they assume happens only to old people. In their eyes, I am immediately transformed from an ordinary person who they think may have a couple of broken bones into a tragic disabled woman.
The script the cabbies think I inhabit is summed up in the first two lines of a tune by fey Scottish songsters, Belle and Sebastian: “He had a stroke at the age of twenty-four / It could have been a brilliant career.” This song is a pointless piece of whimsy about youthful promise and lost potential, but what gives it force is the idea that something that should occur in the elderly has happened to the very young. Strokes occur in individuals of all ages – including fetuses – and are much more common in women under 40 than you might think. The shock I see on the faces of the cabbies says more about their lack of information than anything else, but I confess that the repeated experience of pity and/or lack of understanding from complete strangers is really starting to get to me. After one of the most tricky of these encounters (in which the sheer weight of the cabbie’s freaked-out sympathy was just unbearable) I met a woman in the physio waiting room who had a stroke eighteen years ago when she was in her twenties. Almost the first thing she told me when we started discussing our situations (as you do) was that it had been almost as difficult for her to cope with other people’s reactions to her stroke as it had been to deal with the implications of the stroke itself. She described being in the weird position of having to comfort people who assumed her life was over. This, she told me, made her a very angry post-stroke patient. I’m happy to report that, so far, the only reaction that has really annoyed me was from a nursing assistant who told me that “this must have happened for a reason” before spouting some gubbins about guardian angels and suchlike. So in general, I am not at all angry, but I do find these encounters with ill-informed folk hard to deal with. Part of this, I imagine, is that I am only now starting to come to terms with the difficult reality of being a disabled person in public; and part of it is probably that the trajectory of my own script is still uncertain. Perhaps, in fact, I am just a wee bit afraid of inhabiting the script that the cabbies and Belle and Sebastian have written out for me. I know I am not going to be the-person-whose-life-was-ruined-because-she-had-a-stroke-aged-36 and I really do not feel in the least bit tragic (I would laugh at myself heartily if I did) but it is true that I am not sure myself what my disability means yet. Dealing with that lack of meaning is hardest on days when one feels weak and wonky, and is made more difficult when the rest of the world seems to have already made up its mind.
Next time I am going to write about a completely different kind of human encounter — ie — the heartening and affirming effect of your correspondence. I’m about to begin responding to everyone who wrote to me while I was in hospital. This will probably take some time – everything takes time – but it is a process I will really enjoy.
In other news:
* I have set myself another goal. The windmill walk was entirely flat, and I feel it is time to attempt some proper inclines. Like Rome, Edinburgh is famed for its seven hills. Over the next seven weekends, I intend to ascend all of them in turn, concluding with the most tricky — that is: Mead Mountain. (Hurrah!) I am looking forward to this, and will begin with Castle Hill. I intend to walk up from Holyrood and negotiating bumbling crowds of tourists will, I imagine, prove more hazardous than the actual ascent. . .
* To manage the hills, I really need to work on my balance, my hamstring and knee strength, and the old dorsiflexion. I am going all out with the foot exercises and have acquired a balance board – fun!
* I visited the neurologist and asked to see the pictures of my brain. I’ve been reading all sorts of things about neuroplasticity and brain injury, and it was really fascinating to take a three dimensional look inside my own head! I could see all the areas of damage in my motor cortex — very interesting indeed. I just wish I could now take a look at all the repair work my neurological monkeys have performed over the past few weeks (what did they do with that blocked artery and to where did they re-route all of that lost stuff on my left side?) but I doubt the NHS budget extends to this.