Hello, happy Tuesday.
After last week’s post, all about my speech impediment, I realised that despite talking about disability literally all the time, there’s a lot of stuff that even the people around me don’t really know about. This is mostly because to me, it’s too mundane to be worth mentioning. I tend to stick to the Big Bad Stuff or the Why It’s All Fine stuff, but ignore the day to day stuff. But I saw from the reaction to last week’s post that talking about the run-of-the-mill experiences can be illuminating and help spread understanding. And, from a personal perspective, it’s nice to take what’s rattling around in my brain and put it to paper - it makes said rattling a bit quieter.
So this week I want to talk about something I’ve been struggling with for, if I’m honest, the past few years: exhaustion. I hesitate to use the word fatigue, because fatigue is an actual medical condition, but when I say exhaustion, I don’t mean tiredness. It is so much more than that.
Let me try to explain, although actually it’s quite hard to put into words - we don’t seem to have come up with the language this experience requires. It starts, for me, with feeling a bit run down - that sense you might be getting a cold. But then the cold doesn’t come. Instead, everything starts to ache - a sort of undefined soreness that hovers between phantom and real and has no cause. At the same time, I stop being able to filter out the actual muscle pain in my back; what is usually background noise takes on the qualities of a screaming toddler. I cover myself in Deep Heat and carry on.
And then the slightly weird stuff starts. My body starts to feel heavy, as if someone has tied weights around my limbs. Typing (the basic act of doing my job) becomes harder and harder, as my already rather limited co-ordination breaks down. Time slows, frustration grows. If, at this point, I don’t stop and rest - and I often don’t - I will eventually find myself light-headed, staring at words that don’t quite mean anything. The world takes on a strange pale green tinge. At this point, I am obliged to lie down.
Now, let’s be clear, I’m not telling you this for sympathy. I am extremely fortunate to be able to just lie down when I need to. No, I am much more interested in the accompanying feeling of guilt that appears when I finally allow myself a rest.
I went freelance partly so I could rest without feeling like I was letting anyone down. And yet, when I’m slouched on the sofa with the TV on at 4pm on a Tuesday, often after finishing all the work I need to do, I feel like I’m letting myself down. The problem here is that I have the brain of a workaholic and the body of… not a workaholic (only this week, I apologised to an editor because I filed copy at the deadline, rather than early). And there’s the problem of comparison: my friends are all workaholics too (I don’t even need to name names here, you know who you are) and I always feel like everyone is trying harder than me. I feel, deep down, lazy.
Which, rationally, is crackers. I do produce less work than others, but that’s because it all takes quite a lot of effort, not least because I’m always battling my hands just to get words on the screen. Of course it’s more tiring. Of course I can’t work all hours of the day. And of course, that’s fine. But I have a hard time convincing myself it is.
I know I’m not the only one. There’s whole sections of the online disability community dedicated to convincing ourselves of the value of rest. Self-care is the new going out, or something. But more importantly, as many point out, productivity has been made a moral value by a capitalist system that itself continuously excludes disabled people (hi, pay gap), so it’d really make more sense if we didn’t buy into the rubbish. I find this more political argument much more useful than anything about being kind to yourself, because it places me in a bigger struggle to make society less ableist, rather than being about me and my own hang-ups. (I don’t know what this says about me, but probably nothing good.)
Of course, there’s a wider problem here to do with society’s accepting of disabled people based on their jobs. I cannot tell you how many times someone’s patronising attitude has transformed into respect at the mere mention of what I do for a living. And I’m ashamed to say I’ve used this phenomenon to make my life easier - shoehorning my career into a conversation just so the rest of it will go better. Am I contributing to the problem? Probably. Anyway, what I’m saying is this: it’s hard not to ascribe moral value to how hard you work when the message is that your job is the one thing guaranteed to get people to treat you like a person. But I do often find myself wondering what I would do if I happened not to work.
I’m trying to get better at resting. Luckily for me, the PAs I have at the moment see the signs of exhaustion and give me a stern talking to when I insist on carrying on. I wish I didn’t need this sort of external validation, but it does help. And so do all those Instagram posts. After all, the rest is part of the work. If you need me, I’ll be on the sofa.
See you next week,
Lucy
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Links of the week
I had pieces in The Guardian and Tortoise this week and I’d love if you’d give them a read
Turns out I am not the only one to have called it quits this summer. This piece in The Atlantic unpicks the Great Resignation
In a similar vein, I really enjoyed this piece by Sirin Kale about ‘time millionaires’ (The Guardian)
We’ll see if there’s any links next week or if I just get sucked into Succession. No promises.
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