For the Chronically Ill Who Are Afraid of Simply Being Lazy

an updated essay

I once had a rub-on sticker that I placed on a wall in my study: BE PRODUCTIVE. For years now, it’s been covered up by a framed, treasured Sylvia Plath poem that she typed ages ago for submission. BE PRODUCTIVE is covered up. I can’t bear to see the exhortation because for most of the day, almost every single day, I am in bed. Much of that time, I’m lying with my eyes closed and listening to an audiobook or podcast. While I rest, my work ethic is not in evidence. I am a chronically ill woman on the sidelines, and I am, for the most part, left out of the hustle and grind.

In 2012, I became convinced that I’d developed tendonitis or perhaps carpal tunnel syndrome. I was visiting my company’s home office in Pittsburgh, where my wrists and hands began to twinge with pain. My colleagues, who also worked all day at their computers, clucked with sympathy at my discomfort; many of them wore wrist braces, and ergonomic keyboards were available to employees who requested them. I thought the pain was a natural side effect of my habitual overachievement, self-imposed work ethic, and ambition, which meant that I awoke at 4 a.m. every morning to write for four hours before getting ready for work, and drank enough coffee to cause spontaneous, caffeine-sick vomiting up to three times a day. The pain in my hands, I assumed, was like the vomiting. I could put up with it. I was, after all, ensconced in a culture of creatives in the tech industry with big dreams—people who humblebragged about how little sleep they’d gotten the night before and used the phrases “lean and scrappy” to describe not only our company culture but themselves as well.

But other things began to happen. In 2013, the pain appeared in my feet and legs as well, earning me the diagnosis of peripheral neuropathy. On an autumn flight back from England, I unexpectedly fainted in the aisle. A seizure was suspected but never proven. I began to have trouble walking in a straight line. I developed delusions. My psychiatrist, who had never seen me so ill, suggested the possibility of anti-NDMA receptor encephalitis, a neurological disease most notably chronicled in Susannah Cahalan’s memoir, Brain on Fire: My Month of Madness. During a neurological exam, I was given three minutes to say as many words as I could think of that started with D—I came up with five or six at most—-and was asked to remember a series of numbers that I’d have to recite later. My husband Chris accompanied me to the elevator afterward. “She didn’t even ask me about those numbers,” I complained. He paused and then said, gently, “Yes, she did. You knew all of them.”