In the summer of 1994 I was living in York. I was twenty one; had finished my honours degree; and was looking forward to beginning my masters. I had a job in a pub that paid the bills, but, when one of my professors asked me if I would like to make some money from reading aloud to her uncle, I agreed. This chap had recently had a stroke and was living alone in Los Angeles without the security of a good insurance plan. My prof – who was a brisk, demanding, and can-do sort of person – had flown over to California and brought her uncle back to the UK. He was an aging actor who was by then in his 80s: very proper, very thespiae, and very camp indeed. My prof felt that literary conversation would improve his rehabilitation and that’s where I came in. Three times a week I cycled along the river bank to spend the afternoon with Richard. I read T.S Eliot’s Four Quartets aloud to him, and then, if he wasn’t dozing, we would talk about books. I recall that he was very fond of the early novels of Aldous Huxley, in particular Crome Yellow. Occasionally, I would cross paths with a pleasant OT who got him up into the kitchen, making tea and toast. Richard’s was a similar sort of stroke to mine, but by that point (a few months after the event) his leg had regained more function than his arm. He was able to move about unaided in a wobbly sort of fashion, but I recall that his arm didn’t do much. In fact, I remember feeling that, apart from the OT (which he actually seemed to resent) Richard really wasn’t doing much at all. Outside, there was a glorious English summer going on, and he was just cooped up indoors.
So one day I decided Richard and I should go outside to read. A short distance down the road from his flat were the lovely tree-lined banks of the river Ouse. He wasn’t keen, but I think I lured him out with tales of the New Walk, where York’s fashionable elite promenaded two hundred years ago. Once we were outside the front door, I realised that this was going to be more difficult than I thought. The distance to the river was only about 400 metres, but for Richard the going was very tricky. There were steps and kerbs to contend with, and he had to take my arm the whole way. We made it to the river bank, but he was clearly completely exhausted. I found a bench and Richard asked if he could borrow my cardigan. Using it as a pillow, he lay down on the bench and promptly fell asleep. I sat down next to him and pretended to read my book. To anyone observing the scene, it must have looked as if I were consorting with an elderly tramp. I felt completely out of my depth and knew I had done something very wrong. I was 21, full of beans, and a little frustrated that I was missing out on the good weather while I spent time reading to the old feller. I also, entirely naively, felt that he clearly needed a bit of a walk and would benefit from being outdoors. I had no idea, because he hadn’t told me then, what it was like being inside his skin: that a distance that to me was a mere hop, skip, and a jump away would to him be the equivalent of several miles; that while I possessed boundless energy, to him, the mere activity of rising from his chair to select a book from the shelf was completely exhausting. Richard was fast asleep on the bench next to me, and stayed that way for what seemed an interminable time, but was probably only twenty minutes. When he woke up, he was groggy, and wanted to go back. We accomplished the return journey in the same halting, tottering fashion. Later on, over a cup of tea, he told me that the fatigue he felt was completely overwhelming and like nothing he had felt before.
I now have some understanding of what Richard must have experienced that day on the New Walk. There is something quite insane about post-stroke fatigue. It is blow-to-the-head, room-spinning, muscle-shaking stuff. It consumes and it devastates. Sometimes I am so tired that I can’t even raise my “good” arm to reach for a cup of tea (the horror!). When I am exhausted (and this can happen very quickly) it becomes difficult to move, to get words out, or even to think in a straightforward, logical fashion. The emotional lability that I understand is common with stroke sufferers is much, much worse during such periods of fatigue. I am managing (I think) to tackle most of the challenges the stroke has posed in an affirming sort of a fashion, but when I get tired I become incredibly weepy and frustrated. (I also become very irritated by my over-emotional self, so clearly the fatigue doesn’t affect the intolerant part of my character). I read about those spoons (thanks, Sarah) and Christine Miserandino does a good job of conveying just how it feels having to take fatigue into account. If you are well or able-bodied (like my 21 year old self) it is perhaps difficult to see just how hard it is to apportion out one’s available energy every single day. My problem is that I am more likely to use the one spoon I have, like Robert Bresson’s Fontaine, to attempt to carve my way out of the prison cell.
As a consequence of this, as you might imagine, I have developed a profound appreciation for sleep. Tom has a good story about when, aged thirteen, he was asked by his art teacher to design a coat of arms depicting his favourite activities. In one of the quadrants, he drew a picture of himself in bed, blissfully asleep. This elicited an angry reaction from the teacher, who told him that he couldn’t include sleep on his coat of arms because it wasn’t an activity. Tom, however, felt that sleep was not a negation of action, but was rather something to be positively enjoyed in its own right. From my post-stroke perspective, I would definitely agree. In fact, I would like to include sleep on my own activity-related coat of arms, along with the consumption of good home cooking, regular physio, and tent stitch, to which I have recently become addicted. I sleep for a good nine or ten hours each night, and have to factor one or two naps into each day. The sleep I experience now is totally unlike sleep before. I would say, much like the adolescent Tom, that I actually, actively, enjoy it. Sleep is delicious, restorative and transforming. And, of course, it is when I’m sleeping that my brain has time to heal itself, so I have to make sure I get enough of it. Until now, I have found that I can cope with the crazy fatigue as long as I recognise that as soon as it comes on, I have to just give in and have a snooze. As yet, a bed has always been available in this eventuality, but what will I do when there is just a bench? Or, indeed, nothing? The first thing that coming home has taught me is that I have to plan ahead to conserve my energy. This is annoying, but entirely necessary if I want to do things independently, and to enjoy what I am doing. Anyway, today’s plan is to do nothing remotely physically demanding in the morning, as I intend to try to walk a couple of miles this afternoon. Hopefully there won’t be any lying down on benches and I can show you a pic or two later on . . . after I’ve had a nap. . .