On Writing with Chronic Migraines

How do you build a creative practice around chronic pain?

It’s one of those writing nights where I am able to sneak away from family responsibilities to work on my novel, so I’m up in the attic trying to cram in a few words before I wear out. In the scene I’m working on, my fictionalized grandfather, the hero of the novel, gets drunk and has an epiphany. Or at least he thinks it’s an epiphany until he gets sober again. But for tonight he’s staying drunk because I have a headache, and this scene is as finished as it’s going to get.

In an hour, I’ll be pressing my head against the wall of the shower under blazing-hot water while I try to decide which drug to use next. I’ll have a flash of feeling sorry for myself before I accept the situation. Then I’ll go lie in my bed, a pack of frozen peas on my eyes, and listen to an episode of BoJack Horseman for the third or fourth or twelfth time.

I deal with migraines every week. I have a drawer full of migraine drugs. Under my bed is a mishmash of hats and bandages and massage blocks and room-temperature ice packs. My shelves are full of books on chronic pain and headache healing. Each of these objects once provided a week of hope, followed by a week of suspecting that it might be working, followed by disappointment.

It used to be easier for me to write. I didn’t have to think about the clock ticking down to the moment when the pain burns away my words, when even my bad mixed metaphors turn to mush. For a time, I thought the chronic pain would mean the end of my creative life. It’s hard to create things if I’m constantly in pain, or brooding about the pain I’ve been through, or worrying about the pain to come.

It’s hard to explain chronic pain to someone who doesn’t experience it, the way the physical pain blurs together with the psychological toll it takes. I mean, the actual pain is plenty painful—sometimes so bad that it’s hard to want to live. But a lot of the time it’s more about the accumulation of the pain. It’s like listening to that leaf blower outside that isn’t too annoying for one minute but grows maddening after two hours. It’s hard to imagine that the leaf blower will ever stop. Or when it does stop for a moment, you’re just brooding, worrying, waiting for that asshole to start it up again.

For a time, I thought the chronic pain would mean the end of my creative life.

After years of cycling through remedies and doctors, a few—very few!—things have actually helped take my headaches down from daily to weekly. Even so, I’m no longer waiting around for a magical cure. I know each week will involve some level of pain management. I still work a full-time day job and raise a kid, and I write novels and create YouTube videos (a few on chronic pain) and make mobile apps and occasionally produce a podcast. Some of these projects move more quickly than others, but regardless of the speed, or how successful any of it is, I’m appreciative that I’ve learned how to remain a chronic creator while also being a chronic migraine sufferer.

One way I’m able to keep creating things is by developing and maintaining a tiered system. It’s similar to the Spoon Theory (coined by writer Christine Miserandino): Every task requires a spoon, and when you run out of spoons, you’re out of energy. People with a chronic illness or disability have a smaller number of spoons to begin with. In a related way, I’ve mapped all my possible creative tasks in terms of how demanding they are on my mind and body. The hardest and most intense task is to work on new material. Also in this top tier is doing a major overhaul of something I’ve already created, like when I want to fix the structure of a story or reimagine the storytelling voice or change the point of view—that takes a lot of spoons, and sometimes a few knives. The next tier down is for basic editing, cleaning up, or tightening some existing content, maybe plucking out all the times I say “ummm” in one of my Neurotic Tornado podcast episodes. The next might be to have the computer read aloud something I wrote, so I can assess the story and perhaps take a few notes. All the way down to the easiest task, which is to lie down, close my eyes, and listen to an audiobook or a video that is somehow kinda sorta loosely related to something I’m trying to create.

With this system, I can adjust at any moment based on what I have the strength and stamina to handle. If I’m working on a new scene in my novel and a headache starts coming on, I can quickly switch to a lower tier. Since my pain doesn’t always follow the same trajectory, this shift isn’t quite as clean as I’m making it sound—and sometimes I just want to set fire to all the tasks on all the tiers—but I still find it useful to have this plan in mind in case I can take advantage of it. I mean, it’s flexible enough that I can even listen to an episode of BoJack Horseman using some contrived explanation for why that washed-up, drunk, self-sabotaging horse can help my creative process.

And if I feel better the next day, I can get back out of bed and return to the novel that I’m stumbling through about my grandfather.

In real life, when I was a kid, I was scared to be around my grandfather. He always smelled weird to me, sweet and sour from the liquor and his dirty gray beard. He spoke a broken mixture of English and Yiddish and Polish. He tried to connect with me, and I always tried to avoid him, didn’t ever look him in the eyes. He cried so much after my grandmother died. I didn’t want to be near his pain because I didn’t know what to do with it. He died when I was thirteen, and I never got a chance to know him until I started writing this book three decades later. This man drank moonshine and could bullshit with anyone who set foot into his little, failing dry goods store. Whereas I can barely make it halfway through a drink before the pain is too fierce to continue. I get the hangover long before I can drink enough to get a hangover.

While the tiered system is organized enough to fit on a spreadsheet, I had to learn a few other things that are less easily defined and more about having the right mindset. For one, I had to lower my expectations. I am no longer that immortal twenty-five-year-old. I’m an achy, chronic pain–ridden fifty-year-old. Part of my suffering came from thinking I was supposed to get a lot more done every day and that I had a bottomless source of energy to draw from. I’d lie in bed hating myself for not being strong enough to write those fifteen hundred daily words. But one day, staring at myself in the mirror after a hot headache shower and seeing the exhaustion under my eyes, I stopped waiting for the better me to appear in that reflection. I accepted (mostly) that this is who I am right now, with this face that can’t hide the years of pain and frustration and exhaustion. It’s okay if it takes me longer to produce less. There’s no word count or a deadline for being a decent, creative human, even if I end up missing some real-world deadlines.

The pain has forced me to be more attentive to how I hang on to the happiness and the creativity.

Another thing I had to learn, completely counter to what I just said, was that I also needed to raise my expectations. If I chose not to do creative work whenever I was in pain, I’d never get anything done. So I push myself. Just a little. This is a tricky balance, though, because I don’t want to push myself into feeling worse. I still have to be alert for that tingle in my temples, the burn around my eyes, the tightness in the forehead or neck. Even so, sometimes I just need a little nudge to remind myself that I’m not dead yet, I can still do a little bit more work before I go lie down or do some work as I lie in bed.

I sure don’t love the messiness of dealing with the headaches. But looking back on the past few decades of my life, the weird thing is that overall, I’m just as happy (maybe even happier) and almost as productive as I was before they began. The pain has forced me to be more attentive to how I hang on to the happiness and the creativity.

In the book I’m slowly writing, my fictional grandfather drinks too much because he doesn’t know how to deal with financial failure, with his failure as a husband and a father, and with his grief over the family he lost back in Poland. The alcohol pushes away the shame and the guilt and the loss. Just like my real grandfather, he drinks to cling to the sweetness in his life. I wish I could speak with him today. Now, I understand enough about managing pain that maybe we could have one real and connected moment together, talking about pain and joy and how it’s all intertwined.

Chronic pain is a constant, blurry background noise. It doesn’t have a beginning or an end. It takes a toll in many messy ways. And it’s so hard to explain without a giant pileup of inadequate metaphors about clocks and fires and roller coasters and leaf blowers.

I’ve been dealing with migraines for close to a decade. It can still feel like trying to write while a scary, grumbling monster hides in the corner of my attic telling me to give up. But now, there’s something even more astounding to me about the act of stubbornly choosing to create something, however crooked and incomplete and flawed.