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Thursday, February 2, 2023

I Spent Years Writing My Novel and Then I Lost the Full Use of My Hands

In the spring of 2004, I began what is now my second novel, Brotherless Night. Partway through 2022, I finished it. This span, almost two decades, is also nearly half my life, and most of those years were an ordeal—especially as I began to understand how long it might take me to complete the book, which includes both the beginning and the end of the complex and brutal Sri Lankan civil war. Even so, the final stretch was something else entirely, as a task that had been intellectually and artistically daunting became physically challenging, as well.

In 2020, I began occasionally using Google Docs voice recognition to cope with sore hands and arms, which I had off and on for years. Then, in April 2021, I looked down and noticed that my right forearm seemed to be shaped differently than my left. When I showed both arms to someone else, they confirmed that I was not imagining the strange curve beneath the pinky side of my wrist. My hand was swollen, but I had no idea why.
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It didn’t hurt—yet. But within days, it throbbed. That was the beginning of the end of me writing completely with my own hands. If I gripped, lifted, or typed, that section below my wrist inflated. I saw a doctor in the bustling hand clinic at the University of Minnesota. He was followed by two hand surgeons, two physical therapists, and a host of other specialists trying to figure me out. I had all sorts of imaging as my right hand worsened and my left joined in.

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On the right side the swelling impinged a nerve. My extensor carpi ulnaris tendons—the ones that run from underneath the pinky down the back of the forearm—were inflamed. I had bone spurs, forearm tendinitis, tennis elbow (again), and now also golfer’s elbow—on both sides. The pain spread up, all the way into my biceps. Expanding and moving around, it found the muscles, joints, and tendons I was trying to use in my daily life to compensate for the original injuries. No matter which motion I chose, I couldn’t seem to outrun the inflammation.

The pain correlated to moments when I had picked up my 11-pound dog, a little black schnoodle named Kunju. So I stopped picking up her up. I kidded with friends about yachting elbow and sailing elbow and country club elbow and other bourgeois elbows to which I might aspire.

But the reality was not very funny: I had days when I couldn’t even lift a coffee cup or grab a doorknob. The pain made it hard to sleep. Kunju looked at me mournfully. Cooking was gone; I couldn’t chop or stir. Bourgeois jokes aside, I really had played tennis, and that was definitely past tense. I couldn’t dig a hole to plant a flower. I bought a waist leash to walk Kunju, and developed a system for getting my backpack on without hurting myself. Teaching, one of my jobs, seemed nearly impossible, and my course load was temporarily reduced, as the disability office at the University of Minnesota, where I teach in the MFA program, worked to accommodate my difficulties.

Read More: What I Learned from the Generation of Disabled Activists Who Came After Me

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Most importantly, writing, my main vocation, was forever changed. I had never really written by hand because I was too slow with a pen; I had always typed, and the way I thought about the structure of my sentences was intimately connected to the motion of my fingers on the keyboard. Because of a history of hand injuries, I had had some earlier training in voice recognition software, but I had always considered it temporary. This time, I realized, I might be trying to learn and remember something I would always have to use to manage my workload and would certainly have to use to finish my book. So once more, desperate to meet my deadlines and with the sense that there might be no turning back, I began talking to my computer.

I had another set of training sessions with voice recognition software, and I learned hacks of my own, too. I learned how to build custom commands. I tested vertical mice and roller mice and a foot pedal. I tried Mac Head Pointer, which turns your face into a mouse via your computer camera, but the machine wheezed, the processor working too hard. It inevitably crashed everything; I asked for an upgrade.

I found that I preferred Mac voice control and Google Docs voice typing because the lag between what I was thinking and what the software was typing was shorter; even if the difference was infinitesimal, it mattered. Because of its speed and its slightly better performance with non-Anglo proper nouns, I chose Google Docs for my novel. Sometimes I closed my eyes and muttered scenes into the screen, my former copyeditor’s self unable to bear the typo-written transcription. Sometimes when I could not resist touching the keyboard, I ended up having to wear ice sleeves. Sometimes I opened my eyes only to find that the dictation had stopped working partway through my sentences. If I used a phrase that was also a song or film title, Google would sometimes capitalize it. (“I Still Haven’t Found What I’m Looking For,” one character might have said to another.) As when I had typed for myself, I found that I could not write fiction in the presence of others. It felt too intimate. But eventually that self-consciousness fell away. It had to: The software was capable of composition, but when it came to revision, the amount of time and skill it would take to get things done was beyond me and my looming deadline.

For some time, my partner and a few friends typed for me, entering corrections. Eventually, the university hired two students to work with me as scribes. I tried different strategies—sending them voice memos, sending them draft copy—but everything seemed horribly awkward until I hit upon Zoom remote control, which allows another user in a Zoom meeting to enter your desktop. With time, we became accustomed to each other. Kunju and I peered into our webcam at the students and their cats. I read my entire novel aloud to one of the students, and they patiently entered corrections into Adobe Acrobat. The students helped me to meet deadlines for a short story and a poem. Things were becoming more doable. But everything took longer and required more advance planning.

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These things—patience and prep—had never been my strength, and so in some ways ended up being advantages. I had long advised my students to read their work aloud to themselves, but like many teachers, I am an occasional hypocrite, and it’s doubtful that without my scribes, I would have done it with the entirety of my novel. The act of recitation cleaned up more than I would ever have caught otherwise. And I also had to make appointments with my scribes, which meant making appointments with the book. Procrastination was no longer an option. If you want to screw around when you should be writing, but you have to say out loud to another person, “Open Twitter in another tab and see what’s going on,” you are much less likely to do it. In the students’ presence, the tunnel of my concentration grew longer and less penetrable. I also had to trust myself; if I paused for too long, I would lose the path the sentences were making for me.

When I clocked out with the students, I had to clock out or risk hurting myself. All these strategies and resources helped me to rest. And so I improved slightly. As I did, I couldn’t help but think about earlier versions of the technology and support I had been offered when my hands had first been seriously injured two decades earlier. Everything—the attitudes, expectations, and software—had improved so dramatically. Still, I knew I was working in a place of extreme privilege. The disability resources I drew on—and that made it possible for me to complete Brotherless Night—are not nearly accessible enough, especially to the increasing number of remote and freelance workers in today’s economy. How are those with disabilities supported in decentralized working situations?

I’m grateful for the voices that advocated for me, and also for the discovery of a different storytelling voice. By the time my editor asked me to add one last scene—a fraught conversation between two characters who have been circling each other—I might have been able to type it myself. But I decided not to. I closed my eyes, opened my mouth, and told the story.

from TIME
via Time.com

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