Writing with Chronic Illness

This week I came right up against a wall. Writing can be tough for anybody. Writing a book is even harder. But attempting to write a book with chronic illness? Even Flannery O’Connor said screw it when she was diagnosed with lupus and had to move back home, trading her fabulous life among Manhattan’s literati for writing from bed in her hometown. No more novels, she decided. Short stories from here on out.

So that can be the right call. One of the greatest American writers made that choice.

But I really do want to write a book, or at least finish the one I started 13 years ago this month. O’Connor had finite time. Her father had died from lupus when she was only 16. So she knew she had limited time to complete her work. She wanted to do as much as possible.

And she did.

She wrote masterpiece after masterpiece of short fiction before she died at age 39.

But my 39th birthday is only two months away, and my migraines can be terrifying with all the fainting and heart palpitations and temporary blindness. But it is not life-threatening. I’m sure it’s shortening my life a little, with all the prescriptions and the reduced physical activity. But only a little. I still have decades and decades. Plenty of time for a book or two at least.

So the question is: How on earth do I make that happen?

*             *             *

For two years, I barely touched the novel at all. I couldn’t. I mean I physically couldn’t. I would finish a few hours of teaching from my computer, and then I’d pass out on the couch or, on occasion, puke and then pass out. I had my groceries delivered. I reheated food. I shouted obscenities at the sun when it slipped through my carefully drawn curtains. It was an exciting day when I could walk the trash to the dumpster. But too often, if I did that, I ended up worse off than before. And I whined to my husband that if I ever wanted to be happy, I had to accept that I would never write again.

Those were not a good two years.

But then I began to learn how to manage my illness more effectively. Managing chronic illness, or any kind of disability, is a skill all its own. And like any skill, it takes practice. I spent those two years in deep practice, not even knowing that’s what I was doing.

I learned that writing on a computer could make a tough day so much worse. The refresh rate, at any setting, is a nightmare for the migraine brain. So I went back to spiral notebooks and my grandfather’s typewriter.

I learned that my usual writing marathons of 45 to 90 minutes were no longer doable and perhaps never would be again. So I tried tackling things in five or ten-minute chunks.

At first, I resisted. Ableism is so many things. But one part of it is this assumption that there is one right way—the best way—to do everything. And if you can’t do something right, then don’t do it at all.

Or so we’re taught.

But I learned.

I learned I was wrong.

I could still write. Just not the way I wanted to.

*             *             *

I still can’t. It’s not cool when I’m hot into a project, and it’s burning through me like molten steel.

And then I think I’m going to puke. The room starts to spin. Scintillating scotomas pepper my vision like snowflakes. If I try to push through it, pretty soon I can’t see at all. My heart starts racing. I get so weak it’s hard to stand up.

If I try, I can squeeze out an extra three minutes. But those three minutes will cost me days.

It’s never worth it.

Fine.

So I’ve figured that out.

This compromise—having to stop writing before I’m ready to stop writing—no longer causes me to go into a meltdown. Some days (lots of days if I’m honest) I have to walk away before I want to.

But the hard part is coming back. How do I come back when I’ve needed rest for weeks or months? How do I come back if I was working on two projects and decided to prioritize the other one when I became unable to balance both?

That I haven’t figured out.

*             *             *

Over the last two months, I have focused exclusively on a short story. I find it more productive to put short stories through critique groups than novel chapters. People get the whole picture, and they can respond to every part of it—from language to theme. They’re also easier to progress with in those 10-minute spurts I get a few times a week.

But now I’m nearing the final draft with this short story, and it will be time to submit it in another week or two.

So it’s back to the novel. Trouble is, I have no idea where I am with it.

It’s not because I don’t know what I wrote.

Or rather, it is because I don’t know what I wrote.

I have chronic migraines.

This means I’m usually living through some degree of brain fog. Everyone complains about faulty memory and absentmindedness as we age. But in a migraine state, I can put a carton of milk in the cupboard. I can pour freshly made coffee down the sink and put the mug in the dishwasher before I realize what’s happening. My brain sees it as a dirty dish, and at least I remember where dirty dishes go. When speaking, I may forget words or swap their beginnings so that a “quick grocery run” becomes a “rick quocery gun.” I have, at the most inopportune moments, forgotten my address and phone number.

I still remember my categories.

I just can’t remember the information that is supposed to fill them.

So you can imagine that juggling the characters, events, themes, and motifs of a novel just isn’t going to happen some days.

Especially if I’ve been away from it.

*             *             *

Migraine does in fact alter the brain. People who experience migraines with aura have a 68% higher risk of brain lesions and other structural changes than control groups. So, until or if we find an effective treatment, this is my life. It’s a disability. And like any disability, I have to find a way to work around it.

So here’s what I’m trying.

Outlines.

Don’t get me wrong. I’ve always loved a good outline. And outlining a novel before writing a draft is imperative for me. Always has been.

But now, after each extended break, I’m experimenting with a skim through the manuscript (264 pages so far, and yes, I’ll be cutting loads during revisions) and outlining all over again.

This is because, for me, the novel changes as I write it. This is partly because it takes me so goddamn long now. But it’s also a common experience for creative writers. Characters change in ways we didn’t plan. The plot sculpts itself into a new shape. Things change.

It’s a good thing.

It just means my original outline becomes obsolete.

And chronic migraine means I cannot remember the points at which it is obsolete.

So?

New outline.

So far, this is a huge help. It’s working wonders for reminding me what’s in this behemoth. And it has an added benefit of giving me loads of ideas for revision when I finish this draft (10 more scenes to write). It even helps me continue brainstorming possible endings before I get down the final scenes.

There’s nothing groundbreaking about any this. Tons of writers, disabled and able-bodied, outline throughout the process.

But it’s a first for me.

I’m excited to see how this works out. Maybe I’ll need to add some more tools to manage a book. Maybe I’ll have to write shorter books (probably). Or maybe this will be all I need to get this done.

I’ll keep you posted.

4 thoughts on “Writing with Chronic Illness

  1. Thank you for this! I suffer from chronic pain (and migraines for most of my life so I can relate) and my writing suffers. I have horrible brain fog from severe anemia that I was diagnosed with at the beginning of this year and between no iron and chronic pain, my brain and body don’t allow me to write like I’m running the Boston Marathon. I end up frustrated and forgetful and just plain tired. I repeatedly throw in the towel and exclaim that I shouldn’t be writing!
    So this long-winded comment (that ended up being way too much about me) is a thank you and a bravo in one. Keep on doing you!🥳☀️

    1. Oh I feel you. Our triumphs may be smaller than we think they “should” be, but every single word you get down is a win. It’s always lovely to meet a fellow “spoonie.” ❤ Thanks for the comment, MadMeg, and you keep doing you, too!

  2. Hi Melanie! If you ever want to chat about novel writing or MFAs, just send me a note through my contact form on my website (I don’t have your email address for some reason). I’d like to share with you my good experience with outlining my novel, but I can’t really put all that in this comment box. Anyway, I keep reading your fascinating posts and learning so much about the world through your eyes.

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