Remitting
In an interview filmed as part of CRIP ARTE SPAZIO, artist Abi Palmer says, “You get told over and over again you have to write every day…that’s the way you make art, you keep doing the same thing every day. I have a lot of chronic hand pain, there are a lot of days where I can’t even lift a pen and there is nothing I can do every day, everything fluctuates. So I started to ask myself the question, how can I, as an artist or a writer with a fluctuating body…have a sustainable practice that works with me? If ever I try to meet the metrics of every day mastery…you have to keep grinding, I was always going to be slightly more shit. That shouldn’t be the metric by which you determine if my practice is successful.”
Four years after my initial COVID infection, on a good day, I appear healthy. The aesthetic ravagings are mostly resolved; the remaining functional limits more discreet than daily fainting or the air hunger of lung tissue cells that cannot catch a breath. As long as I’m not pressed to move too quickly, I look like a somewhat optimized, well-designed vehicle, bodily functions working mostly as intended, aided by a few targeted pharmacological interventions.
I puppet this illusion through innumerable calculations, adjustments, regimes, and as much flexibility as capitalism and society will allow me. But I am still uneven ground for anyone to walk on. My action potential is variable; my reliability an illusion and a balancing act of competing priorities.
Limited spoons are the usual metaphor for this, allocated in deficit to the sick and disabled and used up before the day’s activities are over. But while this is helpful to explain limitations to the healthy, or to pace yourself, it isn’t medically accurate. Long COVID patients don’t have less units of energy, they operate inefficiently physiologically. They flip over into anaerobic exercise too soon, fail to effectively transfer blood oxygen, over-respond to stress, build longer workarounds in a damaged brain, rev their engine to compensate for a failing autonomic nervous system. They might have too much of one ingredient (a neurotransmitter, a clotting factor) rather than a deficit. I am a manual car, run by hand hydraulics, and a jalopy at that, not a Ferrari.
Long COVID is an episodic disability, its mechanisms and symptoms and the condition of its patients are relapsing-remitting, in medical terms. Remitting, meaning to pardon (a sin), to diminish (a problem), to set aside (a mood or disposition), to desist (an action), to cancel or refrain from inflicting (a punishment), to give relief (from suffering), to defer or refer (a decision for judgement), to restore (to prior condition), to send (money and messages). Not all patients experience remission periods. Some would describe the overarching curve of their condition as a steep or gradual decline, but even in that arc there is often variation and periods of partial reprieve, whether due to medication, management, or the body’s fluctuations.
In an interview with the Rumpus on her book Sanatorium, on the logistics and labour of managing disability and the spas and baths we’ve historically offered as places of rest, Palmer says, “What’s going on in the head of a disabled person is far more logistics and interruption-based. For me, I wanted those intrusions to be the jumping off point for the practice.” I am cognizant that in a health crash, when my condition relapses, I am not myself and that language and higher-order functions of the brain are the first to go when the alarms go off and the body prioritizes emergency response. I avoid phone calls in which my deficiencies will be glaring and while I might text back, it is through narrowed eyes at a screen that is suddenly too bright and incomprehensible.
Long COVID comes with the type of neuro-inflammation and cerebral blood loss that unstitches coherent thought; an all-consuming symptomology that demands both directed and metabolic attention. It is terrifying to live inside, or to be proximate to, to see your loved ones’ usually well-ordered thinking fall away like scales. In Sanatorium Palmer writes, “when your body is a stringless puppet, lifted by a giant invisible hand and thrown — THROWN — against the walls, lifted again, and hurled to the floor, it doesn’t take a genius to understand you are being punished.”
When this happens, I often drop out of life for fear I will misspeak and damage more than just my own body. I return when I am able and hope doors have not closed in my absence, that I will be remitted from the sin of unreliability. The pattern belies my self-concept as a person-who (who shows up, who can be counted on and trusted, who thinks and moves quickly). The world is not particularly welcoming to maybe-ifs, to the noncommittal, to people who cannot grind out each day and recover overnight, who struggle to keep a mental bookmark in important memories or instructions, even if the forgetting has a medical cause.
A recent systemic review of Long COVID studies concluded that while there was ample evidence of both short and long-term cognitive impairment, including executive function, memory, attention, visual-spatial functions, and processing speed, “language is an area that has not been sufficiently investigated”. There is evidence of impairment on both expression and comprehension, but it is under-researched: six of the 36 studies included in the review evaluated language function, borrowing tests from other illnesses that cause aphasia such as stroke or Alzheimer’s.
One of the challenges of testing this is it’s variability: patients might get through an evaluation and then collapse wordless in the privacy of their home, might test higher if they pulled all the right strings that day to puppet their inefficient body. My own brain is so clearly different now post-virus, even reconstructed, even running at it’s most optimal, but not necessarily in ways that the designers of the Boston Naming Test or the Peabody Picture Vocabulary Test intended to capture. I did a study once using magnetoencephalography, a scan that measures the magnetic fields produced by electrical activity in the brain. My brain was not working normally, but nor did it mirror the electrical activity of someone with PTSD or traumatic brain injury. In the scan, I recited poems to myself, a skill I had newly relearned and wondered after if this skewed the results.
It is challenging to communicate at the best of times. We tangle our words, rush to speak out of perceived urgency and the feeling that if we don’t DO something or say something, the other party will not. We build intimate languages and shorthand together and then use them to hurt. We leave each other on read or unread, avoid calls and conflict, duck attempts at repair, interpret and misinterpret, trip and tiptoe trying to toe the line of preferred communication styles and cadence. We withhold other forms of communication, keeping ourselves out of arms reach or not turning on our cameras. In illness, when my world shrunk, even my typo-filled texts and their responses I struggled to comprehend were a lifeline out into community and resources as the world moved on from lockdown, a bell I could ring for help from my tower, a window into the endurance performance art project that was my sick room. This project is, itself, an attempt at sense-making what I could not say then; a remittance back to my sick(er) self. Not a judgement, or compensation, but a restoration.
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, the aesthetics and labour of illness, or the role of patient-research. To support this project, share it online or subscribe.