Illness (and other reflections on the body)

on Constellations: Reflections from Life by Sinead Gleeson

I have never had a very good relationship with my body. Not a special predicament – especially for girls. Friends around me, slender and striking, complain about the fat that gathers around their thighs or their tummy (exactly where they should be), about the grey beneath their eyes and the length of their noses. Our concept of beauty was constructed by images of the cruel and blissful union of Whiteness and patriarchy and capitalism. There is no escape – only revelations to be had as we age and expand. My great revelation was that part of what we believe to be beautiful is utility: for our legs to walk, our fingers to grip, our senses to be intact and interpret as they should. It is a concept that makes us stare and wince at disability, one that makes us shudder at illness and pity the sick. Many of us would go on in life safe within this precept of beauty. Some are born in its peripheries; displaced, dislocated, a refugee of a convention on normalcy. But we might all encounter sickness: short, long, benign, malicious, remediable or fatal—all sources of maddening incapacity to differing extents. There is little to feel beyond helplessness when your body malfunctions and rebels against your physical balance. Your body is at once an outcast and a tyrant, like a rogue AI gaining unwelcome consciousness.

Sinéad Gleeson’s reflections on the body and the journey it travels made me nervous. I did not know if I was ready to confront, once more, my pain, illnesses and insecurities. She started with a tale about bones, and told us of the arthritis in her hip that made her limp throughout her teenage years. She wrote: “What I felt more than anything in those years was overwhelming embarrassment. Ashamed of my bones and my scars and the clonking way I walked. I wanted to make myself smaller to minimise the space I took up.” She was mortified by her own body as it failed her; morphing from a competent vessel to an inconvenience. She brings us through doctor appointments and hospital visits – each one leaving her more powerless than before. “The patient is never in charge,” she wrote, “The kingdom of the sick is not a democracy”.

Her hip deteriorated when she became pregnant. She experienced pain around the clock, but her doctor waved it off as “baby blues”. Eventually, she was granted a total hip replacement, but only after much convincing, and even then it was “granted as if it was a privilege, rather than something essential.” I winced as I read her passage; the familiarity of her frustration creeping under my skin. This experience of having to convince a medical professional of pain, of having to beg them for treatment is common among women. Three years back, I went to see an internist for a discomfort in my right abdomen. It was painful, and it had kept me from sleep for a few months. “Is it my appendix?” I asked as he slid the transducer across my stomach. “Nothing seems wrong here. It’s probably just your muscles,” he told me, and I had on my face a look of utter disbelief. I jumped off the bed and sat back down beside my mother, silent and thinking as the doctor muttered something about it being psychological and scribbled on his pad a prescription for pain relievers. “I can’t sleep,” I half-shouted, my impatience building. “Something is wrong, and I don’t know why the ultrasound can’t see it, but something is wrong, and you need to find what it is.” I pleaded for a scan, any kind. He relented and sent me for an MRI. A few hours later I was back at his desk, and my brain sputtered as he circled a grey blob in my pelvis and referred me to an ob-gyn. “There’s a cyst in your ovary,” he said, and when my ob-gyn patted my hand and told me it’s benign, I still felt weak at the knees; afraid that this might transform, advance and hijack my body. I was lucky, I was grateful. But at the age of 23, I already share this experience with multiple other women. I feel the layers of helplessness thicken.

Then Gleeson proclaimed: “My body is not a question mark, and pain is not a negotiation.” My blood thrums.

Gleeson was diagnosed with a rare, aggressive form of leukaemia in adulthood. She recounted the time she spent undiagnosed (“to be an undiagnosed patient is to be in a constant state of fear, of waiting for the revelation. Offering a hazarded guess is in an attempt to compute, or accelerate the truth.”), blood clots she coughed up, the countless doctors and interns that surround her bed like a picket fence, the smell of the hospital, cycles of chemotherapy, self-administered injections, and the boredom that stretches further each day. She reflected on the blood in our language and etymology: “cold-blooded killers or hot-blooded lovers; blood magic and blood diamonds; blood moon, blood rain and blood lust. Blood – as we’re repeatedly told, is thicker than water.” She becomes acutely aware of the fluids pumping in and out of her body, the cells that form and break, the abnormality that flow inside her veins. “Breast cancer, a broken limb, cirrhosis are localised,” she wrote, “but a blood disorder is a whole body issue. Unanchored, migrant–blood is its own diaspora.” Gleeson’s lexicon is instinctive. I found myself marvelling at her brevity and the humbleness of her sentences. Each passage overflows with calm, and even in tales of urgency there is no clamour, only beats of agitation, and – at times – despair. It is a style that mirrors life around the cancer patient. I have seen a loved one weep when her mother was diagnosed with breast cancer, her voice heavy with desperation. Yet her protests were said not in complaints but in prayers, and each cycle of chemotherapy that her mother must endure she met not with misery but with swelling affection. It is resolve of the highest order.

When Gleeson stepped into a reflection on death, it was unlike anything I have ever encountered. She recalls the moment she learned the sudden death of a good friend and former lover: “How do you line up words and put them in the right order when you know they will never be adequate? That they are a flimsy version of everything felt in that moment. The world bends backwards, a sinister hallucination.” Suddenly the space she had taken from him seemed malign. Distance is a bitter tonic to death, I’ve learned. There is no remedy.

Gleeson’s lament reminded me of what Susan Sontag wrote on death in her essay Illness as Metaphor: “For those who live neither with religious consolations about death nor with a sense of death (or of anything else) as natural, death is the obscene mystery, the ultimate affront, the thing that cannot be controlled. It can only be denied.” Gleeson experienced this in her grief. “Grief is bewilderment,” she wrote, “Grief is circling rooms and talking to unnamed relatives. Grief is a permanent headache and knotted stomach. Grief is sluggish time, staring at strangers on the street and thinking, how can you act like nothing’s happened? Grief is being angry that the sun is still shimmering away, smiling in the sky.” Elsewhere, she talked of the body before and after the illness; the wall that separates reality from normalcy. Somewhere in that wall is a large brick of grief: Interminable anger at the vessel that fails; alarming fear about a world that will classify your body as wrong and unsightly; pulsating sadness at the loss of “beauty”. We will all encounter sickness, and a different body – an after – will greet us in the morning, strange and unrecognisable (Sontag again: “The body’s treachery is thought to have its own inner logic.”). Each treatment then is an act of reversal; an attempt at restoration of the body to revert it to normalcy – to beauty. Gleeson wrote of artist Barbara Hepworth, whose practice transverse the medical and artistic professions. Hepworth claimed both careers had similarities:

The medical profession, as a whole, seeks to restore and to maintain the beauty and grace of the human mind and body; and it seems to me, whatever illness a doctor sees before him, he never loses sight of the ideal, or state of perfection, of the human mind and body and spirit towards which he is working.

Many of us would go on in life safe within this ideal, and though all of us will encounter sickness, many would come back to embody this image: “If you are fortunate, illness is a car that leaves the road and ploughs harmlessly into a ditch,” Gleeson wrote, “If luck deserts you, the car drives over the cliff into a ravine below.” And we must remember still that some are born in the peripheries of this image; displaced, dislocated, a refugee of a convention on normalcy.

Gleeson’s Constellations is a spirited reminder to exercise what we can while we still can and to care for what we have for as long as we are able to. She does not insist that we fight: there is power in resignation, as you would find in her words, and all of us do, sometimes, she wrote, want to disappear, “to eschew all demands made, to release ourselves from technology, to hide from grief.” There is no escape, no remedy. Only possibility.