Adaptation: How I Relearned to Write in the Thick of Chronic Illness
Over on Bluesky, a fair few people have asked how to start writing again after a bout of illness, tussle with a new disability, or a marked shift in capacity. I don’t know that there’s a particular right answer, but I do know that I personally had to make a good number of changes in how I work.
I have spoken often about the impact of ME/CFS due to long COVID in my life, personal and professional. Seriously. Too many articles to link. I have the added benefit of having previously been disabled. I knew what it was to have my physical world rocked so hard that I had to make changes to just about everything I did. Writing wasn’t really one of them at that time.
Now it is. I want to acknowledge that it’s really, really hard. Writing is an intrinsic part of my identity. I have always, always done it for fun, for expression, for connection, for love. To look at it and realize that the way I had done it had to change hurt. I was struggling to do something I really loved, was always good at. Suddenly I didn’t feel good at it anymore.
That low point is where I would encourage people dealing with new limitations to examine their process. Yes, I used the word limitations. This always gets people’s hackles up around disability. The sooner we all, including people living with new disability, get our heads around the fact that yes, there are physical barriers imposed by our conditions, the sooner we can turn our attention to adapting.
Because there are ways around many barriers. They’re tricky sometimes, hidden, but small changes can open up new ways of doing what we’ve always loved, so we can get back to the business of ourselves. We’re always talking about how inspiring it is when people “overcome” illness or disability to do impressive things most nondisabled people can’t do.
Bullshit. Every story you find inspiring is not one of someone pushing through despite their disability. They have found ways to work with it. To coexist, internalize it, acknowledge and bypass the barriers when possible and adapt when not.
And sometimes it isn’t. The sad truth is sometimes we do lose things we love to disability. I was a library worker, but right now there is no adaptation that allows for the fact that I cannot be physically present in a building for more than a small amount of time. It’s a heartbreak, and I grieve it sorely, and continue to look for ways to adapt as conditions evolve, both personally and worldwide.
But not always. Sometimes the things we love are hiding behind these barriers, waiting to be rediscovered. For me, writing was one of those. This year, I was able to put out two books I’m very proud of after a long drought. I don’t know if that makes me “inspirational”, but frankly I’m not interested in that. I’m interested in living my life fully, my whole self, with everything that means, and that very much includes my disabilities.
I cannot give you a road map back to writing (or any activity you loved). What I can do is tell you what worked for me.
Acceptance
At the risk of sounding like a self help novel, nothing budged until I did this work. There is a grief for loss of capacity that we don’t get to “get over” until it’s sat with and given its time. I raged. I used to be able to churn out pages in a day, and now I had problems opening a document? It wasn’t fair.
No, it’s not, and while understanding that life isn’t fair is pretty important, there’s a child in each of us crying about the hypocrisy of life, and they’re not wrong. That they notice and feel it deeply is insightful, actually, and dismissing them to get to the platitude about unfairness is paving over a problem.
Nondisabled people love to ask how we keep going. The answer is we don’t get a choice. How do you keep going in the face of cosmic unfairness that we all live with? We’re just pretty damn aware of our portion of it, and that’s what you’re responding to, the fact that it can’t be paved over for your comfort.
If you’re asking what this philosophizing has to do with writing, it’s everything. Writing and all art is about grappling with some piece of the human condition, joyous or doleful or horrific or playful. You can’t do it if you’re stuck tangled with that unfairness. Give it its space and let that child grieve.
The great news for creatives is time you spend chewing that over is absolutely usable when you get back to it. Okay, now the craft and practical stuff you were probably expecting.
Examining and rethinking the physical workspace
As I mentioned, before long COVID, I had a spinal injury. It hurt (and still hurts) like the dickens, and I had to say goodbye to the idea that writers love to share like a truism that one should have writing time at a desk in order to get in the proper mindset. Lemme tell you, the only mindset you get in when you’re grinding your discs together includes a ton of four letter words.
Happily, I was able to transition to a laptop. All was well.
Except now, with long COVID, the laptop was proving a problem. I just hadn’t realized yet. I went from spending most of my leisure time in an overstuffed recliner to needing to spend most of my waking time horizontal, propped up with pillows to avoid dislocating things. (I still can’t get them to test for EDS.)
So here I was, trying to strain myself to kind of sit upright enough to type on a laptop, wondering why spending five or ten minutes writing in the glow of a bright screen was absolutely wrecking me. Yes, ME/CFS does come with cognitive strain, so writing does tire me out, but I found even on days when cognitive stuff seemed easier I was really struggling.
I don’t know what made me think of it, but one night in bed I glanced at my husband, who’s also my partner in publishing. “Remember when I used to work on an iPad?” Out of college, I couldn’t afford a new laptop, but a used iPad was right in my stretch range. I wrote on an iPad for years, until pandemic shutdowns meant I needed a dedicated computer for work. “Probably cuddlier than a laptop,” I joked.
I realized slowly that that wasn’t so much a joke. The laptop had been physically stressing me, and even on days I felt good, writing was really hard.
I want to pause and acknowledge that up and ordering an iPad isn’t possible for many disabled people. Heck, it wasn’t really a good idea for us, still waiting for my disability (still waiting now), and the only reason it was possible was a sale on older models. But it immediately changed my quality of life. A book that had been stalled for months suddenly had new chapters, because I wasn’t fighting my physical reality every time I had an idea.
The right tools for the job
The next bit was addressing the two other stages of writing. I found the iPad really doesn’t handle revisions well; my own or my editor’s. So the laptop still has a place in my process, which meant I needed to closely observe something super familiar to ME/CFS and long COVID patients: pacing. The point of pacing is not to increase tolerance to activity. It’s to note the body’s signals during activity and rest before you get into a crash scenario.
Crashing is kind of like how people get sick after a period of prolonged stress, only for our bodies, it can be pretty minimal or unexpected kinds of activity. Crashing, or post-exertional malaise, is a marked, physical period of illness that can absolutely become a cycle if left unattended. In trying to use my laptop for all of my writing, I kept depleting my baseline over and over, making things worse. It is very important to me to not get there, so revisions are slower than they used to be, and maybe than what I’d like, but it’s more important to be able to sustain doing them than it is to try to push through.
The other thing that had to change was my outlining strategy. I have always kept journals of ideas and developed them by hand. Guess what? ME and its delightful comorbid friends come with all over joint pain, including my hands. Handwriting, even with a stylus, wasn’t going to work anymore. Sad day for my collections of journals and inks, but important for me to learn and acknowledge.
So I experimented. I became a lot looser in my outlines, in the documents of the works in progress themselves, usually a couple of chapters at a time. Sometimes notes have gotten sparse, and I’ve discovered my pacing is actually better when I’m not hitting these imaginary benchmarks I set for myself. Speaking of benchmarks:
No more arbitrary rules
The most damaging thing to me as I reasserted myself as a writer were these writing truisms handed down from commercially successful authors or the ghosts of my professors whispering in my ear. You must write eight hours a day. No! Ten minutes a day of mandatory writing, then see what unfolds! No! Write Monday through Friday and give yourself weekends off!
When I finally realized these were all people turning what worked for them into writing myth, it was like the heavens opened up to me. I don’t have to do this. Neither do you. We’re free.
What it did mean was that I needed to figure out what works for me, and understand that what used to be true no longer is. I can’t (usually) write hours at a stretch anymore. Tried the pomodoro thing; wasn’t for me. What seems to be good so far:
Me to me: Try to write a little every day if you can. If you can’t, be chill about it. No self-flagellation and trying to make up for it and setting unreasonable goals. If you’re in the zone, indulge it, but pay attention to signs of strain.
What’s worked really great is writing right before bed. I know there are people who can’t do this, and that’s okay. My point is this works for me. I can wear myself out all I want; I am literally in bed. I can just go to sleep.
Acceptance, again
Hey, guess what, you didn’t think that was a one time deal, did you? Oh, no. Grief is a cyclical bitch. You don’t really go through stages so much as go round and round and some days it’s noisy and some days it’s soft, but you’re not done.
I am constantly aware of the fact that this used to be easy and joyful, like running downhill. And some days, now that I’ve done this, I have that feeling back. And other days it’s shutting the iPad and going to sleep after three straight days of nothing because my spine is trying to murder me.
But there’s no point, is there, to trying desperately to get back there. I can’t. This is reality. I get to live with it. I am going to do it as joyfully as I can, which means appreciating those good days and remembering it’s nonlinear. A setback isn’t so much a setback as a “oh look, we’re here again.” There will be days like that, and there will be better ones, and not futilely wearing myself out trying to have more ironically leads to having more.
I can’t fix your writing life. I haven’t really finished sorting out mine. But it’s better because of this, and we take better where we can, because that’s how we keep going, sweet inner children raging against the unfairness.