How Losing the Ability to Write Made Me Want to Write the Book That Matters Most

In 2019, just a few months before Covid shut down the world, I contracted a rare autoimmune disease called Guillain-Barre syndrome that left me completely paralyzed. It all happened very quickly. One day, I felt some mild tingling in my legs, and the next day I couldn’t get out of the bathtub without help. Less than 24 hours after that, I could no longer blink.

(Making Peace With Your Writing Pace.)

It took the ER doctors a few hours to puzzle out what I had, but when they did, I was told my paralysis was not likely to be permanent. There was just no way to know how long it would last. Recovery from Guillain-Barre can take up to two years, and there are some patients who never fully get everything back. This, as you might imagine, was a devastating situation for many reasons.

For one, I had young kids, and they seemed to enjoy having a dad who could battle with balloon-swords and teach them the ancient art of the Macarena. My incredible wife also seemed to like having me around, at very least to reach that vase in the highest cabinet. But, perhaps most relevant to this particular story, I am a novelist who has been writing almost every day for the better part of 25 years.

So, when I returned from an initial weeks-long delirium and could almost think clearly again, I started to think about writing. A friend and fellow writer who came to see me when I could talk again, pointed to me in my hospital bed and said, “You realize this is like four books, right?!” A nurse who was taking care of me at night, found out I was a writer and watched the movie adaptation of my first novel. “Are you going to write about this?” she asked me the next day. I didn’t know how to answer that question, and I can’t remember what I said. But she was in charge of my painkillers, so it was probably something agreeable.

The question I was asking myself, though, was, “Will I be able to write anything again?” Getting the full return of feeling to my fingers, or even a clear voice for dictating text was not a given. And I wasn’t sure, given my daily buffet of medications, if or when I’d be able to return to the kind of sustained concentration it took to write a coherent sentence, let alone enough of them to constitute a book.

But there was another, deeper question haunting me, as I spent my afternoons listening to the hospital’s helicopter landing and taking off on the roof beside my room: What would I write about if I could actually do it again? Maybe it was because I was imprisoned by my illness at the time, but writing about ventilators, catheters, and the demonic doctor who told me I wouldn’t walk for years, didn’t exactly seem like the project I wanted to lose myself in.

I also didn’t want to write pure escapism, as tempting as the idea sounded. I felt like, if I actually got to do the thing I loved again, I wanted to make something I really cared about. And this brings me to the other, more subterranean part of my illness: the mental part. I’ve been diagnosed with Anxiety Disorder since I was teenager, and I’m really proud of the work I’ve done to keep it from controlling my life. By the time I got sick, I had so many tricks and ways to cope that, most days, my condition was an afterthought.

This all changed when I was trapped in my body. All the work I had put in: the breathing exercises, the self-talk, the hours of therapy, they all abandoned me. And the panic roared back in to fill the void. There were times when I had over 20 panic attacks in a single sleepless night. I felt like I was right back in the early days of my condition, a teenager who thought he’d be terrified forever. Not an ideal place to live.

But it was the place that eventually led to my next book: a young adult novel about grief, anxiety, and finding your way through unimaginable hardship.

Through treatment and intense physical therapy, my body was slowly restored. And, in turn, so was my writing life. I learned to type again, my fingers returning reluctantly to a familiar rhythm. The ideas came next. Some people were surprised that I didn’t want to mine everything I’d been through for a book about my illness and recovery. Who knows, maybe someday I will (if anyone reading this wants to pay me a million dollars for my suffering, I am open for business!).

But, when I actually started working in earnest again, the story I chose was not my own. It was a book about five anxious teenagers bonding and surviving in the woods on a therapy trip. A book now called How to Lose Yourself Completely. Each of the characters in the novel is a captive to their anxiety and looking desperately for a way out. And when something happens to their guide, they must work together and overcome impossible odds to make it out alive.

Readers might be surprised to know of this story’s origins. But it makes sense to me. After my illness, I knew the feeling of no longer recognizing my own life. Of being lost and desperate to find a way out of the fear and uncertainty pressing down on me. I chose to write the book in the second person (“extra years in purgatory for the second person!” a writing teacher once shouted at me) to capture this feeling of disassociation and loss of self. I wanted to excavate the sensation of being outside your own life, searching for a way back in. An experience I had nearly every day in the hospital.

My own road back was a long one, but mercifully short by Guillain-Barre standards. I have some lingering health complications, but they’re small and, at this point, nearly indistinguishable from the daily afflictions of middle age. On the whole, I’m astonishingly lucky that almost everything I lost in those first terrifying months was ultimately given back to me. My hope is that the book that came out of it all will give something back as well. We’re all recovering from something, and sometimes finding the right book can help us get our footing again.

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