I am not the first to describe keeping a chronically ill body alive as playing biohacker or necromancer: a mix of prescription and over-the-counter substances swirling in a caldron of side effects and unintended consequences; A/B variables tested against a fluctuating cursed baseline; a medley of mobility aids altering my shadow. I am still the most complex research project I’ve ever run: both scientist and monster*, threat and rescue, a patient incapable of passive direction.
Jillian Weise, writing in Granta on disability as being a common cyborg says: “They like us best with bionic arms and legs….They like exoskeletons, which none of us use. They would never consider cyborg those of us with pacemakers or on dialysis, those of us kept alive by machines or made ambulatory by wheelchairs, those of us on biologics or anti-depressants. They want us shiny and metallic and in their image.”
In spin class, while we all breathe deadly pathogens in a poorly ventilated room, the instructor will say something like, “when you feel like you cannot push any further, when you feel like you cannot catch your breath, add more (resistance) in”. Most mainstream fitness classes have a version of this rhetoric; encouragement to “leave it all on the bike” or on the mat, to use bodily discomfort as a gauge for effort, sweat as perseverance.
It is a strange space to be in as someone that still sometimes keels over if there’s no seating on the subway, and can never risk pushing to the limit recreationally. The things my body has undergone post-COVID would break most fitness instructors or athletes, confound most exercise scientists. A different slant on endurance athlete: to both suffer something difficult and to outlast it. To quote Taylor Swift, a spin class playlist staple: “you wouldn’t last an hour in the asylum where they raised me.”
Hanif Abdurraquib’s book, There’s Always This Year, begins with the lines, “You will surely forgive me if I begin this brief time we have together by talking about our enemies. I say our enemies know that in the many worlds beyond these pages, we are not beholden to each other in whatever rage we do or do not share, but if you will, please, imagine with me….that at least for the next few pages, my enemies are your enemies.”
In an interview with Furquan Mohamed at his Toronto book launch, he said the first line came to him in a dream, and became, along with the invocation “we” and “our”, a pact with the reader, that he could not move through this book alone. It is not a book about disability per say, but it is a book about sport and survival and ascension to success, the ephemeral and permanent collectives of place and fandom.
I have not written this series with an ounce of the craft or planning of Hanif’s book — the whole purpose was to write swiftly and on my own timeline — but I did make the decision early on to write both the intimate invitational I, and the classic scientific passive that allows the speaker to hide behind what “the research says”. To both hold out and withhold, to be both patient and researcher, poet and pardoner. To forgive myself for what I, and capital S-Science, did not know then or could not interpret. Later in the book he writes, "I have sat at the feet of poets who told me that there is power in withholding. In not offering the parts of yourself that people are most eager to see.”
Lately, I have been particularly enraged by poor methodology and research design among my fellow scientists, medical and otherwise. I sat through a conference on antisemitism in which researchers presented egregiously poor surveys and interpretations cloaked in math as misdirect, unwilling to acknowledge the real world variables impacting their experiments and their own bias. I read papers every day on Long COVID that fundamentally misunderstand the nature of the disease and the research and medical needs of patients. The structure of most medical research requires a healthy comparative norm who could not ever cross the line into the realm of the sick, something that disability advocates argue does not exist in real life.
I am angry about methodology because it is a safer target that the violence and violent beliefs underlying it, a problem that feels easier to fix compared to the violence of a social science that will not acknowledge genocide, or a medical science that cannot conceive of it’s own historic and present harms. An experiment that needs adjusting, instead of a monster in the dark.
Hanif writes “One way sports works is because of the fact that many of us do, in fact, survive on the miracles and mercies of others”. I’ve long longed for a mainstream workout class or sports community that considers disability outside of the starched rehab of hospital out-patient programs. One that tones down the flashing lights and cranked speakers and unstable temperature, makes space for canes and wheelchairs between the aisles, has adapted equipment that fits into prosthetics and closed captioning for instructions, that does not presume that what you endure there will be the hardest part of your week or that pain is a signal of success.
To be included in the collective “we” of sport instead lumbering my way in like a monster from the shadows and hoping today’s experiment lets me endure what’s required without miracles. To take my body out of enmity with itself and the abled world.
*Citations as always to Dr. Lucia Lorenzi for this concept
The Impairing Curse is a long-form, serialized experiment in personal essay, science journalism, policy analysis, and poetry. To start at the beginning and read it in order, go to the first essay or read about the aesthetics and labour of illness, the science of salt, and the failures of public health. To support this project, share it online or subscribe. The series is intentionally not behind a paywall, to ensure broad access to patients and timely circulation of information in our evolving public health crisis, but paid subscriptions are welcome.
Grateful, as always, for your perspective and analysis. My post-Covid body is barely threaded together with mast cell stabilizers, grit, and a lot of attention to pacing, although I’m seeing slow improvement over time. I’m grumpy about Haraway for some of the same reasons Jillian Weise is, so thanks for that link. Just so appreciative of this project.