On Easter Monday I reread A Spoke In The Wheel. ASITW, as I shall refer to it henceforth, was my second novel, which dealt with the coming to terms of a disgraced cyclist and a disabled cycling fan. Easter Monday was day 18 of my convalescence, if we’re counting from the first day I tested negative for Covid, and was, like many of the previous 25 days, spent mostly lying on the sofa.
While my main reason for rereading was being in a mood for more cycling after watching both Paris-Roubaix races in the afternoon of Easter Day, and also to see if there was any mileage in a spin-off story for the B couple, it was quite an interesting experience. This is, if not the most ill I’ve been in years, certainly the longest duration of illness I’ve had, and I couldn’t help looking out to see what I’d got wrong.
Of course I’d done my homework at the time, getting two ME sufferers of my acquaintance to check and double-check for errors and faux pas, but this is as close as I’d want to get to experiencing chronic illness for myself. I’m very thankful indeed that I do seem to be getting steadily better. I’m noticing tangible improvements from week to week, if not necessarily from day to day. On Monday I went into the office for the first time since the middle of March. Yesterday I had to have a lie-down as soon as I’d shut down my laptop. Tomorrow I’ll try riding my bike to the station.
So what did I find? Actually, not all that much that spoke directly to my comparatively short experience of illness. The whole point of ASITW was that it was talking about long-term conditions. I was writing about two people who spent most of their lives at the limits of their physical capacity, who were intimately familiar with that territory. It’s new ground for me. Anything I might have added from my current experience would be part of a prequel, or, just about conceivably, a flashback.
My limits are changing all the time. Not, perhaps, so fast as I’d like, certainly not so fast as the Protestant work ethic thinks they should be, but they’re changing. I know about as much about chronic illness from a month of post-Covid as the person who does a one-night fundraising sleepout knows about what it’s like to live on the streets. Which is to say, not much at all. If I were writing ASITW now I’d still need my specialist editors. Maybe even more so than I did before, lest I think I know it all now. (A little learning is a dangerous thing…)
And the other thing is that it came from the point of view of someone who had been disabled and now wasn’t, with all the assumptions that implies. Ben’s experience of disability is far in the past even if his experience of not being able to do everything he wants to do is very recent. He was always going to start out as a clueless git, and being a clueless git is, I would argue, not something that one needs personal experience to write. (I have often been clueless. I have tried not to be a git.) If I’d had this month of fatigue when I was writing ASITW I wouldn’t really have had anywhere to put it. Or, if I had, it would have been a very different book. And, you know, rereading the one I actually wrote, I’m pretty happy with the way it ended up.
Autistic on Wheels – Katherine’s advice and comments were immensely helpful to me when I was writing ASITW. She’s doing important advocacy work.
The rise of sensitivity readers – an article from Independent.ie quoting the formidable Susan Lanigan