I haven’t worked for two years. By which I mean only that I haven’t had a job. I am sick and, for the time being, my body is not fit for work. I have the time to think about the work we do when we’re not working—when we’re not competing in that arena of fixed matches. The fact of my unemployment also affords me the time to write. So, let me get to work.
In April 2012, at thirty-three, I fell ill in a nightmare of vertigo. It began as lightheadedness walking up the stairs one Wednesday morning. By Friday night I was nauseated by the passing scenery outside the car window. By Sunday night I was convulsing in bed, and each turn of my pounding head sent the room spinning and my stomach churning. There was no sleep, no rest, no comfort. My life and everything in it tilted away from me. In a blur, my mother dragged me to after-hours clinics and emergency rooms. The first diagnoses were varied and benign. Positional vertigo. One week to recover. Viral labyrinthitis. Three weeks to recover. Vestibular neuronitis. Six weeks to recover. Three weeks in, I scheduled an MRI at a private imaging centre even though every doctor who had seen me had assured me that, at the moment, the measure was unnecessary. The same afternoon, my GP called me at home where I lay in bed on my towel, dizzy and sick from taking a shower. Brain cancer, he said. Possibly multiple sclerosis. “I know you are familiar with multiple sclerosis from your job at the MS Society.” I worked at the Cerebral Palsy Association, and in that moment I had no familiarity with anything. In fact, I was a body that literally did not recognize its self. A cerebellar lesion (the abnormality spotted by the MRI) meant that I could not accurately locate my self in space. I had no bearings. I felt only my body in pain.
When the initial trauma ebbed slightly (a second MRI showed an area of demyleneated nerves rather than a malignant tumor), I began the work of recovery. I have done much of this work unconsciously, through the continual minute firings and misfirings of nerves trying to work around brain damage. Despite assurances from specialists of a full recovery, it became clear I was dealing with something long lasting. Whatever it was that assaulted my nervous system in the spring, whether a violent and indiscriminate virus or the first attack of a chronic disease, it left an indelible mark on my brain and permanent damage.
The lesion appears on the MRI as a light gray area surrounded by the darker gray matter of my cerebellum. It manifests in my life as obvious deficits (I fall over as soon as the lights go out); as domestic frustrations (I can’t load the dishwasher); as intimate indignities (I need help showering); and as solitary grievances (I fall asleep to the screaming of my ears). The injuries to my nervous system demand extra work of my brain; deficits require compensations. My brain works overtime to keep me orientated in space, and my nerves labour persistently to create new pathways around the damage. I feel very acutely the moments when my brain is trying its hardest. At the hospital, the neurologist tests me: run my heel down my shin (I fail), follow his pencil side to side (I think I pass but I fail), walk heel to toe (inconclusive), walk heel to toe with my eyes closed (I fail and fall over). Outside of the hospital, there are moments when I know my brain is trying harder than it ever has before: standing still, sitting still, looking up, looking down, turning around in small spaces, standing up for the first time after waking, and most other activities that require keeping my balance or that involve a rotational motion. I know these activities are taxing for my brain because they give me headaches or nausea.
I feel my unconscious labour all the time. In fact, perhaps my greatest conscious effort since getting sick has been accustoming myself to a body ever at the forefront of my awareness. Waking to an unfamiliar interaction with space terrified me afresh every morning for a long while, and still does from time to time. These days, there is more between me and my environment; a field of signals, once invisible and crossed in a millisecond of firing synapses, now appears to me in exaggerated dimension, as a distance to travel. I push through a variety of bizarre sensations, which are the smoke of shorted circuits, to reach the world. The lack of immediacy is enough to make me feel slow, a little behind, and very much removed. I work at taking things slowly, at being patient, at giving my brain the chance to do its own silent work. Sometimes I work on my anger—cultivating it mostly—but calming it too, when it becomes too much to bear.
Chronic illness requires a balance between the work you do to improve your symptoms and the work you do to live with them. In the hopes of improving symptoms, I do a kind of physical therapy called vestibular rehabilitation. To begin the session, I wear blackout goggles fitted with tiny cameras that project onto a screen the involuntary movements of my eyes, drifting and beating irregularly, as they try to situate my body. The therapist charts the abnormalities, looking for signs of improvement or further deterioration. I work on balance exercises, as well as visual exercises to help my brain learn to rely on the spatial information coming from my eyes, along pathways of healthy nerves, rather than from my inner ear, the pathway where the damage lies. I repeat these exercises. Look up to the left. Repeat. Now to the right. Repeat. Walk in a straight line while looking side to side. Repeat. Walk down the hall with eyes closed. Repeat. Fall. Repeat. For the time being, the symptoms don’t change much with repetition. My body doesn’t feel different, it’s not learning even though it’s labouring. But with repetition, I learn to feel differently about my body. I learn to let it be. I learn to see it from the outside rather than only to feel it from the inside.
I function somewhat well in public; I believe my slight sway is imperceptible to my friends. Maybe the one public signal of my insulted brain is how quickly I get tired, or that I’m usually looking for a chair or some other perch to steady myself. I function well enough to socialize, to cook slowly, and to ride in a car. But not well enough to drive a car, to eat in a crowded restaurant, or to have a job. I stopped working as a grant writer for the Cerebral Palsy Association the day of my first emergency room visit, and I receive disability pay from a private insurance company. Lisa, the claims examiner, calls me periodically to check on my status. Where am I on the “road to recovery”? What can my body mean now to the market? It seems so unfamiliar and variable that I can’t imagine a place for myself in the world of “work.” But the market is constant, able, so insolently healthy that my new and, I thought, irreconcilable body seems to Lisa no challenge for its appetite. She effortlessly redefines my labour. All my work becomes, or has been all along, the work of getting back to work. To the insurance company, my work has always been in service of the market imperative to Be Well. The pervasive ideal of self-care and the “Health and Wellness” industry that creates, manages, and fulfills that ideal, is also always in service of capital’s ultimate requirement of good health. We owe it to our Selves to be healthy; the self here being the productive, vigilantly independent, goods-accumulating subject that is both the hero and beneficiary of market capitalism. This is not the self I have been working on, or for.
One doctor told me, once cancer was no longer on the table and I could walk without nausea, “You are on the frontier of life!” The frontier—an archetypal site of labour. The idea of the frontier (of breaking hard ground far from home, of the enormous effort implicit in starting again) does seem more appropriate to imagining life after illness than the idea of recovery (of regaining the old, of returning to past health). Recovery itself is something of a misnomer—illness is so transformative that there is none of the going back that recovery promises. At the onset of my illness, I saw my personality shatter under the weight of my sudden and total embodiment; my life, my mind, now held fast to my body by the web of my injured nervous system. “I” was divested. Dis-integrating with the increasingly faulty sensory input that sustains the coherence of the subject. Such was the fear and such was the terror of an unrecognizable existence that I experienced what psychiatry terms “disassociation.” I said on the phone to a doctor, as I gazed out a window a-slant and swimming, “I don’t think my ‘I’ will be coming back from this.” And although the end of selfhood may be conceptually interesting and even full of promise and potential, I looked for ways to pull my self together; I looked for ways to rein in a mind that, along with my body, appeared to be fleeing with all the hurtling momentum of a runaway train.
When I could walk and sit with a measure of composure, I began seeing a therapist. He does not talk to me (as is his right as a psychoanalyst). He is at work and I am working. He looks at his shoes or at my shoes, which makes it easier for me to do my work of speaking. I can’t make him speak, or answer my questions, or in any way make his work visible (he would say invisibility is the product of his labour). But I can make him laugh, which feeds my suspicion that the analyst is ever and always the true beneficiary of this exchange. Telling stories, whether true or untrue, fragmented or falsely unified, is a labour of construction—a labour of the frontier. But in my effort to build (or rebuild—the frontier’s emptiness and newness a well-known illusion), I am not looking to resurrect my old self, nor to pick up my narrative of a self-same subject where I left it on the eve of illness. I want something different now, less constrictive, less rigid and so less vulnerable to breakage. I want only a modest hemming, a provisional delineation to carry me with a degree of containment the rest of the way to the grave (not to be too morbid). I believe I have achieved that.
Rebuilding on the frontier of life has not been an effort towards identity. In fact, I remain utterly unidentified: unidentified body, unidentified disease, unidentified market value, unidentified future. I can’t find anything in the mirror anymore. I can’t see myself in the future anymore. The past is as far away and obscured as if behind a whole mountain range of time. Despite the structural unity I’ve created here, I find myself somewhere on the outskirts of narrative identity. Driving back to Edmonton in January from a doctor’s appointment in Toronto, I watched a moose run in a deep prairie snow. Her dark hulking shape shocked through the white landscape beside the Saskatchewan highway. Her gait was violent, thrashing, erratic, dangerous. It was a movement I had never seen, an unexpected shape I couldn’t have invented. It was the first time since getting sick that I thought, “Yes, it is maybe almost like that.” I welcome this new state of not quite self-recognition. It leaves me open for fresh solidarities, for unpredictable interactions. I don’t need to identify my self at all to recognize the value of a new shape. ♦
“Body of Work” is from our spring 2014 issue, Women’s Work