Silent Treatment

In the worst seasons of sickness, I went silent. Unable to draw the names of loved ones or my doctors out of the magic hat of my mind; unable to assemble the breath to sustain a sentence. Attempts to communicate with the outside world shook the closed captions of my brain, words swapped shifts, a glitching vocabulary vending machine spitting misspelled homonyms. I stopped answering the phone, canceled all non-vital appointments, and gave up miscommunicating my condition to an audience that could not compute it without my translation. Somedays, I removed words from my environment altogether, listening only to lyric-less music that did not take extra cognitive energy to hear. The brain, inflamed, under-oxygenated, malfunctioning, shuts down all but the most necessary processes and mine decided silence was preferable to further damage. 

Hospitals are never quiet. Everything hums and beeps, gossiping like pond ice. Every visit, I am struck by how poorly designed the buildings and protocols are for rest or healing. Their blueprint is coded for sanitation and emergency efficiency; beds built for easy stripping of bodily waste and lit for patient observation, not for good sleep. The times I have been most ill-treated are the ones I came alone, or with a friend, too sick to articulate, fainting repeatedly and accused of overdosing out of health anxiety. The triage desk, understaffed and sifting urgent from the surge of supplicants, screening for ailments treatable with platitudes and patient education, knows only what family looks like on paper. They take you less seriously if you come without evidence of nuclear anchoring and people legally empowered to speak for you, or file a complaint. 

Once, when I didn’t answer the phone for days, a friend in another city called a wellness check, convinced my silence was an augury of suicide, my illness a hallucination, my once girlfriend’s rumours about me true. I learned the hard way that police can track your phone and enter without permission if someone calls wolf, the number of blows to break a door, that if self-harm is suspected they can demand you undress or withhold your cane, remove you from your bed. I learned that my city’s new Community Crisis Service still sends police first, without nurses, crisis counsellors, or harm reduction staff, that they still threaten jail if you do not comply. On my intake notes, the state of my apartment and failure to get out of bed to answer the door was listed as rationale; too sick to fold laundry or do dishes, to maintain a proper appearance in the home I did not give permission to enter.

Before I got sick, no one would describe me as ever at a loss for words. I used them strategically and imaginatively to weave webs: to affect, amuse, articulate, describe, defy, declare, endear, entertain, evoke, invoke, instigate, inform, horrify, narrate, negotiate, question, plead, please, probe, and tease. A precision of terminology alive in my brain at all times, swimming in orchestrated schools. A poet’s love of the lyric world; a bureaucrat’s love of their powers of manifestation. I could talk my way in and out of the best and worst of situations; describe anything I wished with vivid accuracy. 

I spent a day against my will in the ER waiting room, feverish and strapped to a gurney, coughing into my mask, eye-cover and earplugs to stopper the sensory overload, forbidden from eating or taking medications, fielding questions I refused to answer, monitoring my vital signs with my own portable devices while the unmasked police watched only for rules broken. Elaine Scarry, writing in The Body in Pain says, “The goal of the torturer is to make the one, the body, emphatically and crushingly present by destroying it, and to make the other, the voice, absent by destroying it.” She says, “at the end of war, opened bodies and verbal issues are placed side by side… in most instances the verbal assertion has no source of substantiation other than the body.” Nothing I said that day, especially about my body and it’s vulnerability to destruction, meant anything to the people with the power to protect or harm it. 

Concerned I might be biased against cops or think I was ill-treated, they kept up a constant stream of lectures. They said they were trained professionals, and I should not judge them by their peers’ action. They said I could not see my own medical specialists because I was too sick to judge my own sanity, could not go to the hospital that had my medical files, could not follow my doctors’ prescriptions, no matter how clearly labeled. They said they were adhering to every protocol on the books but could not point to a documented source; I had to take their word for it. They said someone unnamed in another city was worried about me and their word was louder than my silence.

It took six hours to get a quiet bed and a closed door, to dismiss the police, to see a doctor with the power to approve me to eat and take my cardiac and pulmonary medications. Four more to send me home to rest thanks to a shift change and overcrowding gumming up release protocols. Not a single test conducted, not even for COVID, despite coughing wildly through every consult, unable to walk to the bathroom unaided. Six weeks for my health to begin stabilizing after.

As I was leaving I saw my escort, uniformed at the end of the hall, haunting another patient’s bed. I was released to the court of public opinion and the care of my actual doctors, hands bound only by prayer, grist for the heady rumours grinding my community. No apology for the false alarm. No follow-up offered because they determined my illness belonged to other wings of the hospital, under the care of other specialists.

This is not an uncommon experience for post-viral patients. Porochista Khakpour writes: “Women simply aren't allowed to be physically sick until they are mentally sick, too, and then it is by some miracle or accident that the two can be separated for proper diagnosis.” Every week, I see letter-writing campaigns and fundraisers to save patients trapped in the part of the hospital where their real health conditions are ignored and worsen for the silence. Patients with severe gastrointestinal disease accused of eating disorders and denied feeding tubes, heart conditions misdiagnosed as anxiety, careful care plans discarded in favour of exercise and fresh air — a 19th century prescription for an imaginary illness.

There is an accusation people (and doctors) make of those that centre their illness in their public persona, social media bios, and their work: that we are making ourselves sick by focusing on our sickness. That if we were silent we would suffer less, that our symptoms worsen for naming, and we infect others by speaking openly. But Long COVID, like AIDS before it, affected large swathes of people simultaneously, who are incentivized to compare notes on doctors, clinics, symptoms, and treatment in the face of public health misinformation and poor clinical guidelines. Patients have kept each other safer through refusing to stay silent and our labour has prevented both new infections and worsening conditions. Much of medicine’s Long COVID care protocols amount to wait-and-see: withholding diagnoses or tests out of frugality or fear that informed patients will ask better questions; hoping the body will silently repair itself. If you ask, I’ll tell you the magic words to unlock the doors to specialist referrals and treatment, passed from patient to patient.

At home, I pawed a protection spell in paced steps around my apartment, rehung the mezuzah, installed a security bar even a trained body wrapped in kevlar couldn’t break through, slept the broken fevered sleep of a post-exertional crash. I thought about every wellness check that ended in worse things than a health crisis and rumours, the many deaths in the silent hands of the police. I stopped trusting people to know how sick I was, for a while, for fear they’d decide it illegal for me to stay unsupervised in my own accessibility-friendly home, but offer no care themselves. Carly Boyce, in their zine helping your friends who want to die maybe not die, asks: “when do we feel okay about overruling someone’s body autonomy?” How can we avoid “grabbing the wheel” and launching into detective work or jumping to fixing actions? They write, “it is important not to convey judgement for the strategies someone needs to use to survive.”* 

Years earlier, when my then-girlfriend said my illness made her sick with self-loathing she left no air-time for rebuttal or amelioration. She’d all but stopped speaking to me months before we broke up, a slow motion withdrawal after a long year of dropped balls. There is a kind of silent treatment that is intentional punishment in intimate relationships. There is a kind more akin to an under-resourced doctor’s office that never answers the phone; the possibility of care on the horizon if you try hard enough to get through. I sleeping beauty’d through hell and woke to a lover who wished she’d left before the spell broke.

Her love language was touch and service, and she put me firmly out of reach of both for fear of failing either; stoppered her ears to my words. She didn’t want to say what she wanted to say and so she said nothing, avoiding visits and phone calls, unopening texts that couldn’t be unread, adhering to the strict limit of pandemic households and her in-laws’ definition of family. She said she could not bear to see me sick and thus could not see me at all. Scarry writes: “to hear that another person has pain is to have doubt,” to distrust someone’s else’s description of the problem. The three-body problem of our polyamory erased by no longer speaking my name; the problem of my own, sick body, out of sight to be out of mind, in the hospital it was not safe to enter alone. Nothing I said, especially about my body and it’s vulnerability, was comprehensible.

*For more information on anti-carceral suicide resources, I highly recommend Carly Boyce’s compiled list.

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 fainting, water therapy, and the aesthetics and labour of illness. To support this project, share it online or subscribe.