The van appeared at just the right moment. A few of you guessed that I’d been going through a difficult patch. It is important that I continue to keep track of my recovery, so I’m going to try to make sense of this ‘patch’ in this post. A few weeks ago, I was signed off from physio. Perhaps I should have been pleased, but it merely left me with a number of unanswerable hanging questions- did it mean I was ‘cured’, ‘recovered’?’ had my physical improvements now come to an end? Was this wonky, uncomfortable body as good as it was going to get? For the past 14 months, I had treated physio and exercise as my ‘job’ – and I was now forced to think about what the future looked like without it. What was I going to do with the rest of my life? During my final physio meeting, we talked about the many limitations and problems I still deal with, and I asked about approaching Headway (the charity whose literature I mentioned in this post). The response to my suggestion rather shocked me: in effect, I was told that I was not disabled enough to approach that organisation. “Stick with Chest, Heart and Stroke or the Stroke Association,” I was told, “they know the score.” I kept schtum at the time, but this exchange has stayed with me, and has been the source of much anger. In no sense was it my intention to access much-needed services that are there for folk who certainly require them more than I. But I have suffered a serious brain injury, and I spend every day dealing with its after effects. Why shouldn’t I contact a charity which is there precisely to support people with such problems, and whose provision, unlike the other two organisations mentioned to me, seems specifically geared toward younger people?
Then a couple of things rather dented my physical self-confidence. In the first Buster Keaton style incident, I became stuck in an “automatic” door. I was unable to extricate myself chiefly because of my weak left arm, and had to ask a bemused bystander to assist me. In the other incident, I lost my balance and fell against a wall. It was a nasty fall, and has left me with a badly bruised hip, and a painful lower back. In fact, my back – never a problem before my stroke – is now the source of perennial pain and discomfort, largely, I imagine, because of the general weakness of my left side, and my over-dependence on my right. I have found myself becoming increasingly frustrated with my body, the weakness, the wonkiness, and particularly the unpredictable refusal of my left leg to do what I tell it. My left side does not feel like “me” at all, and I have found myself repeatedly wishing that I had my “old” body back or even, in some very dark moments, that I could just get rid of the unruly leg. (I am ashamed to confess that there have been times when I have felt that I would rather have no left leg at all rather than the one I now have).
All of these things have brought home to me that the many problems of having a stroke are chronic rather than acute. Perhaps some things will still improve, but I am likely to have to deal with my physical weaknesses, auditory problems, terrible fatigue, and annoying impairments in what neurologists call ‘information processing’, for some time to come. It might seem bizarre to say that the easiest part of stroke recovery is the acute phase, but I really think this is the case: I experienced total left-side paralysis, but this was followed by improvements that were dramatic and in some respects exhilarating. There was a terror in having basic functions destroyed by the stroke, but a wonder that accompanied their reacquisition. I found a particular joy in my renewed physical understanding of the use and design of tools, in my ability to teach myself to use them, in my discovery that my body was infinitely adaptable and resourceful. Fourteen months down the line, I feel that I have rather lost that wonder and that joy, and, finding myself the owner of a body that remains painful, uncomfortable, unpredictable, and woefully lacking in energy, am left only with an unhealthy sense of physical frustration.
I suppose all that I am saying is that dealing with the acute phase of stroke is one thing; addressing stroke as a chronic condition is quite another. To be truthful, one of the things that kept me going while I was in hospital was the thought that my condition was not going to be chronic, that, unlike the clearly depressed folk I saw around me who were dealing with long-term neurological problems, I was going to get better. By working hard at my recovery, I decided, I would, in effect, make myself well. I now feel that, though they might well have helped me in the short term, such assumptions were really rather shallow and self-deluding. I think I thought that through the force of will, and hard physical effort, I was somehow able to recover the ‘old’ me. What I didn’t acknowledge was that there was no ‘old’ me anymore. I might have had the volition to work at the physio, but I was ignoring the massive rupture that the stroke had caused in my life. I remember a doctor telling me, about two months in, that he felt the facts of my stroke had not ‘sunk in’. I was very annoyed by this at the time – of course I knew I’d had a stroke – but perhaps, in a sense, he was right. I certainly wasn’t addressing the fact that my life was going to look very different.
The “old” me barely thought about her body. It was just there, unacknowledged, doing its thing, enabling me to walk two hundred miles across the North of England, get up and down Scottish mountains, and generally be in the places I loved. But now my body is intrusive and annoying. Why is my leg not working today? What does that peculiar headache mean? My eyes won’t focus – here comes the fatigue. Do I really need to rest again? The unpredictable body (and brain) are very tiresome, and dealing with them also has the effect of privatising one’s perspectives, compounding the loneliness associated with any chronic condition, and, at times, making one unpleasantly selfish. To be frank, it is hard to think about the bigger picture or other people’s feelings when you feel like shite.
To be short, then, I was in a fug: a fug produced by the pressing awareness that the many problems of my body and brain are, to one degree or another, chronic, and the fact that, in the absence of regular physio or other support, I was just going to have to get on with it on my own. A few interconnected thoughts have helped me to get out of the fug. The first was reminding myself that I am not on my own at all.
There are many, many wonderful things about Tom, but one of the best is that he is full of fun. Indeed, it is very hard not to have fun with him and Bruce about.
Watching Tom and Bruce this weekend, I thought about the sheer joy and exuberance they both find in physical experience, particularly outdoors.
I said in my third paragraph that I felt that I had lost the joy and wonder of the physical. But why? My body, although annoyingly different to what it was before, is still infinitely adaptable and resourceful. Like all bodies, it is still, in fact, in a process of becoming. And my legs, though unreliable, are certainly capable of hauling me up and down a hill. In fact, if I stopped thinking about how wonky and uncomfortable I was for a moment, I appreciated the pleasing this-ness of being outdoors — the sun on my body on a warm day, the crazy coconut smell of the gorse — probably more intensely than I did before my stroke.
Perhaps this all sounds trite and Pollyana-ish. Indeed, I have been irritated myself on more than one occasion by medical professionals telling me that one of the most important things I could do was to enjoy the moment and the simple things etc. I suppose it makes a difference if you arrive at these conclusions yourself, rather than having someone inform you, in terms that seem rather patronising, that it is amazing you can make the bed at all, or telling you to chew a raisin, and appreciate the raisin-ness of the raisin (this actually happened). Perhaps the point is that these things lacked context for me: I was really not arsed about whether or not I could make the bed, and the raisin-ness of the raisin meant nothing to me at all. Gorse-ness, however, is something else entirely.
It has helped me to turn a corner, anyway. And how nice to look forward to a Summer in which, with the help of Tom, and Bruce, and our new van, I shall enjoy much more of it.
And while we are on the subject of bodies and physical endeavour, please spare a thought for Tom on Sunday, when he will be running the London Marathon. We Northern rubes are praying for a cool day, and a good run. We’ll see you when we return from Babylon.