A Woman of Action

Dr. Lucia Lorenzi writes, about being a scholar in convalescence: “The brain is trying so hard to make everything have some sort of meaning, some sort of theory, some sort of poetics. Not every illness has to result in a memoir or some sort of poignant monograph from which one learns a thing, and yet my inner monologue narrates things as such.” Long COVID broke every component of my writing process, reading mechanics, and meaning-making. I couldn’t imagine the future or recall the past, couldn’t make narrative links or draw conclusions or see the whole from the parts. I lived in a terrifying, indescribable, eternal present. My notes from this period are a stranger’s: enlarged handwriting looping through thoughts I don’t remember having and nonsensical symptom logs of mis-recorded dates and dyslexic vital signs (temp: 69.8; blood oxygen: 19%). Writing was like working with a meter-length artist’s brush, or in a dark room in black ink on black paper. 

Studies of brain injury use lagging or disjointed eye movements as an indicator of impaired cognitive function. My girlfriend used to tease me for reading too quickly, for being a poor close reader of the books we loved to dissect, but in truth I had an excellent memory. Now my brain couldn’t fill in the blanks when I scanned a page: I forgot plots, character names, how to spell everyday words. I took sick leave and traded my day job for the work of filling out medical paperwork and research studies. Alice Hattrick, writing about her own and her mothers’ illness in Ill Feelings, describes it like this: “...unable to go to her job as a lecturer in History of Design, she has found only more work: phone calls and confusing meetings with HR, days spent compiling documents with names like ‘Letter to Sussex Wide ME service.doc’ and ‘Ill Health Retirement Factsheet.pdf’. My mother must write her own medical history, over and over again, like a doctor, except she is also the patient.”

The curse is that before I got sick, my girlfriend called me a ‘responsible monster’, internal alliteration brightening the tease of being on top of my shit. The curse is that her wife called me a Woman of Action, a matchstick between commitment and action, the queen of follow through, out the door before anyone else finds their coat.

The curse is that before I got sick, my girlfriend called me a Responsible Monster, internal alliteration brightening the tease of being on top of my shit. The curse is that her wife called me a Woman of Action, a matchstick between commitment and execution, the queen of follow-through, out the door before anyone else finds their coat. In illness, my entire system of life admin falls apart. Economists talk about poverty taxes or the cost of being poor. Disability researchers and advocates talk about disability taxes: the extra costs of supplies, services, and supports; the penalty of dropping the ball. But it’s not just this: I cannot recognize household objects, remember how to answer the phone, or comprehend why turning the sink tap doesn’t illuminate the bathroom. The scrolling list of necessary items for every task, the colour-coded calendar that used to live effortlessly in my brain, are gone. I have lived alone for nearly a decade but suddenly I am brushing my teeth in the dark and getting lost walking to the corner store.

In the first months, no one knows how sick I am. The whole world is in lockdown, research is nascent, and I am a feverish, unreliable narrator. My girlfriend lives in another city, perfecting her at-home workouts and becoming a sourdough bro, and our polycule is not a “household” in the public health definition. It will be, for some months, against public policy for us to see each other. At the end of the first month, I am briefly hospitalized with a cough like a serrated knife pulled from my throat. It is the only way to get a CT scan to rule out secondary infections and blood clots, to pinpoint which torso organ is causing the chest pain scaring everyone around me. No one seems to know what’s wrong but I am not dying. If I were, surely they wouldn’t let me leave? 

The first time my girlfriend put me to bed in the guest room, early in our relationship, I was too feverish to have feelings about guest-ing in her marriage. Glad only for someone pulling the emergency cord, for the ordinary sounds of someone else’s family, to be the object – not subject – of worry. I think of this often in the first months of illness: the comfort of being the passenger in a crisis, of domestic care forbidden under public health orders meant to protect the population, not individuals.

In the 2nd month, after 4.5 years of dating, my girlfriend tries to break up with me long-distance. She says she’s too busy to see me and that our lives are diverging: hers to trying to get pregnant and to renovations, a castle to protect her family from the pandemic, and mine into the unknowable future that is illness. A Woman of Action, I take the train to say goodbye and come home sicker than I left but our relationship survives.

In the 4th month of illness, in the 4th month of the pandemic, my girlfriend’s wife is diagnosed with breast cancer: the kind that makes the medical system move swiftly. In their living room, visiting in the murky period between diagnosis and treatment, her wife and I work together to lighten our shared partner’s worry: that the at-home prescription delivery is delayed, that it won’t work or will cause unbearable side effects, that other unknown calamities are at the door. Her wife, as usual, is optimism, and I am pragmatism. Since I could not be a wife, I once asked my girlfriend for an exemplar all my own. She said of all her loves she would eat my thighs first. That I am cheeks, hair, and eyes, and her wife is brows, breasts, and teeth, the balance of opposites in everything but affection. Together we are an artist’s rendition of a good bet; the complete package of home team and away.

In polyamory, there is a saying that your problem is never with the other party, but with the hinge partner, how they bend and rust, take action and freeze, balance between you and the inequitable systems all relationships live in. And so, despite my own situation, despite institutional and social inequities, I am thankful the medical system knows how to treat cancer, that there are private surgeons and a whole interdisciplinary team to manage her care. But even if you have the less-scandalous title, even if wedding invites are addressed and family, even with best intentions, the law does not consider you anything but a mistress. You have no rights, no recognition, no expectations, no recourse, no emergency contact, no health insurance, no severance, no permanence, no promise, no priority in the division of resources.

Nothing makes sense but nothing about cancer, or the pandemic, or my illness, or public health policy makes sense in this moment. Anne Boyer in her book The Undying writes: “As soon as a patient lies down on an exam table, she has laid down her life on a bed of narrowed answers, but the questions are never sufficiently clear.” There are no books yet about fevers or tachycardia or neuro-inflammation that lingers months post-COVID, no research showing the parallels between chemo brain fog and long covid cognitive impairments, no evidence-based actions to take, no grand gesture to save my relationship. I don’t yet know that this is what viruses do sometimes, and have done, throughout history: dysregulate vital functions beyond repair.