And so my life became one where I stayed at home. For years my days’ rhythms were controlled by how my body felt at any given moment. The only certainty was knowing that I was unable to stay awake past 5 p.m. My cognition, including the ability to finish sentences and remember basic words like milk, declined throughout the day. Under these wretched circumstances, the world shrank to my bedroom. While I’ve since become more critical of social media, Instagram and Twitter enabled me to make connections with other writers and live vicariously through people who could go to far-off lands. Instead of being jealous of strangers’ jaunts to Italy and South Korea, I gratefully soaked in their photographs of lapis blue oceans, and I marveled over international cuisines so unlike the bulk packages of Ensure protein shakes I relied on.
When it comes to my own place in the world during that time, the story is best told by the private investigator’s report, requested by my insurer to determine whether or not I was “actually disabled” enough for my disability insurance benefits. For much of his report, he describes days of sitting outside my house and not seeing anything for his entire shift. He wasn’t able to observe me, in other words, because I was sick in bed.
***
By the end of 2018, I’d improved enough that my plans for 2019 were more ambitious than anything I’d been able to do in years. Some of my symptoms had abated and my energy had partly returned. I’m not sure what did it. Was it the low-dose naltrexone, the automated hemotherapy, the tiny injections I received weekly, or something else? But it was certainly good timing. I’d had a limited book tour in 2016 for my debut novel, The Border of Paradise, in part because my body simply couldn’t handle it. By the time my second book, The Collected Schizophrenias, was released, I’d become well enough to travel abroad for a small UK tour.
Once I was in London, I felt forged from fire, emerging fresh-faced and gleaming. Being at home for so long had removed me from the world, but as soon as I stepped outside the lobby of my hotel near the West End, I flowed back into the cacophonous land of people.
When I wasn’t being ushered around the capital by a representative from my publisher, I wandered this same city—acutely aware that I had bypassed it on my last trip. I followed the stream of bodies hurrying to their Very Important destinations, my ears immediately tuning in to English accents that ranged from the broad to the pert; felt the whoosh of a car passing that nearly killed me when I’d neglected to first look right instead of left; basked in the lovely banter of couples and stern warnings from mothers to their children. Though my body still had limitations, I’d forgotten what it was like to slip into a life where I experienced a relative sense of freedom. I could go anywhere; I could do anything. I could stop at a fish-and-chips shop and douse my battered cod in malt vinegar. I could stop at a bookstore and browse familiar books with unfamiliar (and, to me, superior) foreign covers. I still had a schedule, dictated by my tour responsibilities, but even that felt like freedom from the life to which I had been previously confined.
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