Losing full use of my hands as I finished my novel

IIn the spring of 2004 I started what is now my second novel, Night without brothers. In mid-2022, I finished it. This span of time, nearly two decades, is also nearly half my life, and most of those years have been an ordeal, especially as I began to figure out how long it could take me to complete the book, which includes both the began that the end of Sri Lanka’s complex and brutal civil war. Even so, the final stretch was completely different, as a task that had been intellectually and artistically daunting also became physically demanding.

In 2020, I started using Google Docs’ speech recognition occasionally to deal with sore hands and arms, which I’ve had on and off for years. Then in April 2021, I looked down and noticed that my right forearm seemed to have a different shape than my left. When I showed both arms to someone else, they confirmed I wasn’t imagining the weird curve under the little finger of my wrist. My hand felt swollen, but I had no idea why.

It didn’t hurt…yet. But within days she was throbbing. That was the beginning of the end for me writing completely with my hands. If I grabbed, lifted, or typed, that section under my wrist swelled. I saw a doctor at 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 who tried to understand me. I’ve had all kinds of pictures when my right hand got worse and my left joined.

On the right side the swelling affected a nerve. My extensor carpi ulnaris tendons, the ones that run from under my little finger down the back of my forearm, were inflamed. I had bone spurs, forearm tendonitis, tennis elbow (again) and now golfer’s elbow, on both sides. The pain has spread to my biceps. Expanding and moving, it found the muscles, joints and tendons that I was trying to use in my daily life to compensate for the original injuries. No matter which movement I chose, I couldn’t get past the inflammation.

The pain was related to the times I picked up my 11-pound dog, a small black schnoodle named Kunju. So I stopped holding her. I joked with friends about yachting elbow and sailing elbow and country club elbow and other middle-class elbows I could aspire to.

But the reality wasn’t very funny: I had days where I couldn’t even lift a cup of coffee or grab a doorknob. The pain made it difficult to sleep. Kunju looked at me sadly. The kitchen was gone; I could not cut or mix. Bourgeois jokes aside, I had actually played tennis, and that was definitely in the past. I couldn’t dig a hole to plant a flower. I bought a waist leash to walk Kunju and developed a system to wear the backpack without hurting myself. Teaching, one of my jobs, seemed nearly impossible, and my class load was temporarily reduced, as the office of disability at the University of Minnesota, where I teach in the MFA program, has worked to address my difficulty.

Read more: What I learned from the generation of disabled activists that came after me

Above all, writing, my primary calling, has changed forever. I’d never really written by hand because I was too slow with the pen; I had always typed, and the way I thought about the structure of my sentences was intimately connected to the movement of my fingers across the keyboard. Due to a history of hand injuries, I had had previous training in speech recognition software, but had always considered it temporary. This time, it dawned on me, maybe I was trying to learn and remember something I should always be using to manage my workload and definitely should be using to finish my book. So, once again, desperate to meet my deadlines and feeling like there was no going back, I started talking to my computer.

I had another set of training sessions with the speech recognition software and learned my own hacks as well. I learned how to create 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’s camera, but the machine hissed, the processor was working too hard. Inevitably it brought everything down; I asked for an update.

I found that I preferred Mac voice control and Google Docs voice typing because the delay 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 slightly better performance with non-Anglo-Saxon proper nouns, I chose Google Docs for my novel. Sometimes I closed my eyes and mumbled scenes on the screen, my former copyeditor unable to bear the typewritten transcript. Sometimes, when I couldn’t resist tapping the keyboard, I ended up wearing ice sleeves. Sometimes I’d open my eyes only to find that the dictation had stopped working mid-sentence. If I used a phrase that was also a song or movie title, Google would sometimes capitalize it. (“I haven’t found what I’m looking for yet,” one character might have said to another). It felt too intimate. But eventually that self-awareness faded. He had to: the software could compose, but when it came to review, the amount of time and skill needed to get things done was beyond me and my looming deadline.

For some time, my partner and some friends wrote for me, making corrections. Eventually, the university hired two students to work with me as scribes. I tried different strategies, sending them voice memos, sending them a draft copy, but it all felt terribly awkward until I hit the Zoom remote, which lets another user in a Zoom meeting access your desktop. Over time we got used to each other. Kunju and I watched the students and their cats on our webcam. I read my entire novel aloud to one of the students and they patiently entered the corrections into Adobe Acrobat. The students helped me meet deadlines for a short story and a poem. Things were getting more doable. But it all took longer and required more upfront planning.

These things—patience and preparation—had never been my strength, and so somehow ended up being assets. I have long advised my students to read their work aloud, but like many teachers, I am an occasional hypocrite, and it is doubtful that without my scribes I would have done so with the entire novel. The act of acting cleaned up more than I would have ever picked up on otherwise. And I also had to make appointments with my scribes, which meant making book appointments. Procrastination was no longer an option. If you want to joke when you should be texting, but have to say aloud to another person, “Open Twitter in another tab and see what’s going on,” you’re much less likely to do that. In the presence of the students, the tunnel of my concentration became longer and less penetrable. I also had to trust myself; if I stopped too long, I lost the path the sentences were tracing for me.

When clocking in with students, I had to clock in or risk getting hurt. All of these strategies and resources helped me rest. And so I improved slightly. As I did so, I couldn’t help but think of older versions of the technology and the support I had been offered when my hands were first severely injured two decades earlier. Everything – the attitudes, the expectations and the software – had improved so dramatically. However, I knew I was working in a place of extreme privilege. The disability resources I drew upon and allowed me to complete Night without brothers—they are not affordable enough, especially for the growing number of remote workers and freelancers in today’s economy. How are people with disabilities assisted in decentralized work situations?

I am grateful for the voices that have sustained me and also for the discovery of a different narrative voice. When my editor asked me to add one last scene – a tense conversation between two characters who have surrounded each other – I could have written it myself. But I decided not to. I closed my eyes, opened my mouth and told the story.

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