The year my girlfriend’s wife had cancer, she stopped visiting me, overwhelmed with increased responsibility and risk in every realm of her life. I watched her wear down until she had nothing left to cushion her bones, grinding out hope labour for a future she couldn’t bear to imagine becoming unachievable.
Kathleen Kuehn and Thomas F Corrigan define “hope labour” as “un- or under-compensated work carried out in the present, often for experience or exposure, in the hope that future employment opportunities may follow.” Kori Allan describes it as work “premised on the logic of investment” and the neoliberal imagining of the self as an improvable portfolio of skills and employability. To quote Sasha Constanza-Chock, it’s the often “unacknowledged, un-valorized, un-remunerated, and uncredited” work we do in the hopes of future work that is all of the above.
In the beginning, long before COVID, I took my skills for granted. I didn’t have a childhood ballerina’s precision grace but I had an everyday trust in my own physical capabilities and coordination; my body bouncing back from most collisions. Objects at rest near me tended to stay at rest if I desired and I never seemed to need any. I worked on my feet, strong-arming stacks of VHS tapes, sacks of muffin flour, and platters of banquet dinners. My soccer coach said her right D could run like a deer but on the left I had a foot like a truck – an immoveable brute force.
There is no predictable pattern to it after COVID. I bike or swim or skate or kayak, climb stairs, make breakfast, or wash my face, and then sometimes, the next day, or two days later, I collapse for an afternoon or a week, or a month, or a season. The medical terms for this are post-exertional malaise (PEM), post-exertional neuro-immune exhaustion (PENE), or post-exertional symptom exhaustion (PESE), all suggesting not just energy depletion but a mechanistic failure to effectively labour and repair. My acupuncturist describes it as a shortage of coolant for an overheated engine, not a lack of fuel. My physical rehab therapist describes it as starting every day with the glass already too full.
In me, it presents like combination flu, jet lag, hangover, and concussion; every frailty in my body flickering like street lights before a power outage, seemingly long-dead symptoms returning to haunt me like Christmas ghosts. Once, I take my girlfriend on a golden hour hike and then sundown in her bed for three days, overstaying my welcome but too delirious to make an exit strategy; brain moving thick like a bad blood draw or a stuck zipper. Once, after days at the cabin snowshoeing without ill effects, I lift a single kettlebell overhead and spend two months underwater. The pattern means that loved ones often see me mid-air and pre-collision, thrilled to be aloft, not in the aftermath.
Research suggests that repeatedly hitting your body’s invisible threshold can cause a downward spiral, further degrading the mechanisms of repair and reducing your capacity, the opposite of heathy endurance-building. Pacing guides suggest using biometrics like staying below 50-60% of your max heart rate or setting a daily step-count. One long covid rehab program I tried suggested burning a maximum of 1400 calories/day, misunderstanding both the inaccuracy of caloric estimates under tachycardia and the impossibility of reducing energetic expenditure when you are nearly bed-bound. Alex Haagaard has written about how one function of chronic conditions is the bodies’ ability to tune it out, ignoring internal alarm bells so that we can move through the day. To combat this, I kept the colour-coded spreadsheet from hell: tracking symptoms, exertion of every kind, medical interventions, sunshine, diet, sleep, and human contact, trying to make sense of the noisiest data set I’ve ever analyzed. A researchers’ approach to hope labour, combined with the infallible logic of fevers.
In part because of this potential trajectory, my condition makes me eligible for Medically Assisted Death (MAID) in Canada. The criteria, the assessor explained, is that my condition be unbearable to me, and unlikely to be remediated by available, affordable, treatment. Some patients have used the assessment process to highlight the lack of treatment options or broken social service design. A quadripelgic mother of four reported that her 90-day waitlist for non-terminal-track MAID was 2-3 times faster than qualifying for disability income assistance. Another patient reported that she qualified in part because there were no gastroenterologists in her province willing to treat her. Eligibility does not unlock access to experts, funding, or palliative care that might make our conditions more bearable or our outlook more hopeful, it only documents medicine’s unwillingness to try. The assessor said she hoped I would chose otherwise, but procedurally she had to approve me.
COVID has always been an occupational illness, often caught at work or while commuting, environments where it is difficult to avoid infection without policy interventions to reduce spread. When I first got sick, I was working on a project mapping exposure risk to occupations and demographics, the results of which were later used by my local government to model distribution for personalized protective equipment and vaccines. As a labour researcher, I’ve written elsewhere on the workforce implications of increased disability and the invisible labour of care work in quarantine. The UK Office of National Statistics found that self-reported Long COVID was highest in social care, teaching, education, and health: care professions where in-person work was the norm through much of the pandemic. Access to paid sick days, disability assistance, remote work, and workplace accommodations varies wildly across occupations, imperative resources for an illness in which sufficient and early rest may be preventative. Three years out, some of the best estimates of prevalence come from occupational studies, including soldiers and medical professionals, but patient forums suggest significant disruption to every occupational skillset: chefs losing their sense of taste and smell, pilots with slowed reaction times, musicians with tinnitus, hairdressers losing dexterity, and software developers unable to tolerate screens.
In a world where care work is undervalued, chronically ill bodies need more labour than most. An enormous amount of labour goes into the work of bodily maintenance or preventing decline; the work of research, advocacy, and medical system navigation; and the work of learning and adjusting to an often changing body. Hope labours in waiting rooms and bathtubs, changing catheters and filling pill boxes. Leah Lakshmi Piepzna-Samarasinha writes that “disabled people have a full-time job managing their disabilities and the medical-industrial complex and the world—so regular expectations about work, energy, and life can go right out the window.” One could extend this to caregivers, whose lives reorient to absorb new responsibilities.
In my own relapsing/remitting body, I think of this work as labour in the hope of stabilizing symptoms and improving function, crawling out of the rubble of relapse and back onto even ground. It is labour to fill in the gaps that AP Biology and a single intro to infectious disease class left in my medical expertise; proof of my condition for an incurious medical system. It is labour done in hopes of staying able to work for remuneration, which maintains my access to health insurance, rehabilitation programs, sick days, and nutritious groceries, the building blocks of keeping my body alive.
I’m not a patient person, but in illness I affirm I am a persistent one. I stubbornly restart the same sequential cognitive and physical exercises over again dozens of times, building up strength and endurance and then crash-landing for days or weeks. I wash the fever sweat off every morning for months only to drown the next night. I walk around the block, lying on the pavement to keep from passing out when the hourglass that is my cardiovascular system turns over. I complete and then fail multiple staged return-to-work plans. I research and re-research medication and supplements, ordering something new only to forget what it treats. I write incoherent eulogy-long texts explaining my incoherence to friends who long blocked me in frustration. I’ve thought often of all the things I could have learned if I wasn’t trying to reanimate my corpse: the hobbies and skills and volunteering and creative side projects I might have taken on, the relationships I might have deepened in the era when we all had more time. Part of this project, The Impairing Curse, is to make something useful or meaningful or beautiful out of that lost time in which I could make nothing but promises.
In the worst seasons of sickness, I fell asleep promising myself that tomorrow might be the day symptoms lifted like a storm. When my girlfriend grieved so hard she could feel nothing but, when she lost track of her edges, like a dim room or a chemical reaction, I tied my tongue in strangle knots to keep from speaking ill, fed her days with distraction, held her night’s sleep in cool hands. I promised this would all end and we would not end with it, that she would be blameless as the weather.
The Impairing Curse is a long-form, serialized experiment. To start at the beginning and read it in order, go to the first essay.
Thanks for your articulate description of the challenges that so many of us have faced. Looking forward to your future posts.