There is nothing that focuses the mind more on the realities of being disabled than filling in forms about it. I completed the worst of these on Tuesday — a hideous 59 page epic. There are whole sections in which which one must list the activities one used to do, and can no longer. Writing about these was rather grueling. However well one feels one is doing, whatever small improvements one sees, ticking the box that states that you need help getting in and out of the shower is singularly depressing. I blame that form for the insomnia from which I have been suffering since. As I usually sleep like The Log, and require a couple of daily naps to keep me ticking along, the effects of this have been pretty devastating. Unfortunately, there have been no days this week that I could say were “good” (in the sense that the energy I possess is equivalent to the tasks at hand).
As you know, I am determined to get well and be mobile. This is different from “being positive” or “thinking positively”, because there appears to be no element of choice about it. In this context, determination seems to me to be a sort of basic – even desperate – will to life. I often found myself musing on this in the early, rather terrifying, days following the stroke when I couldn’t move at all. The way I felt then was philosophically similar to a character out of Beckett who “can’t go on” but “will go on.” Since then, the struggle to recover – and it is a struggle – seems to me to to be a sort of process of vacillation between those two points: between how much one ‘can’t’ go on and how much one ‘will.’ I’ve found that the only way to deal with recovery’s pendulum-swinging effect is, again, like a Beckett character – with resignation and with humour. And I mostly find myself on the ‘will’ side of the equation. But the bureaucracy of disability is, by necessity, focused entirely on the ‘can’t’. And tiredness not only heightens ones sense of incapabilty, but also – as one lies awake for the third night watching the inane antics of Mapp and Lucia – makes one weirdly self-absorbed and fearful. (At least, that’s what it does to me). Next week I am going to see the cardiologist to finalise plans to close up the hole in my heart. I am really looking forward to getting this sorted (at the moment I often feel like a sort of time bomb in which another stroke might occur) but obviously at some level I am worried about it too, because it has been preoccupying me during these stupid, sleepless nights. Overall, then, it has been a thoroughly rotten week, and the sole focus of this weekend is getting my sleep patterns back to ‘normal’. Tom will help me stay awake all day, and I shall knock myself out at night with a couple of jellies. I am hoping that two days of this will restore my Beckett-ian balance. Anyway despite being totally exhausted, many things are cheering, including these peonies that turned up from my colleagues at work. They are just coming out of the closed-fist stage, and I am really enjoying them.
Today I intend to get out in the fresh air with Tom and to sleep very well tonight.
* the title of this post comes from the closing moments of Waiting for Godot, but has a double resonance with Arthur Askey that my sister (who it was nice to see this week ) will appreciate.