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This body, my body

A reflection on life with a chronic illness
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IRIS DENG/THE VARSITY
IRIS DENG/THE VARSITY

The sun hung heavy-lidded in the sky as I rested on an outcropping of rock overlooking one of the shallow valleys that dimpled the woods outside the ancient village where I’d been staying. I’d sprinted through the vineyards outside the house, chasing a runner’s high over the steep and twisted hills surrounding our small corner of the world. But something in the air had told me it was time to stop, time to rest for awhile.

Fifteen years old, a year from high school graduation, two hours outside of Paris, and 6,000 kilometres from home, I turned a corner and came up short. Tentatively, I explored my mind, coming up with something unfamiliar: freedom. I had finally managed to outrun it all: the father who told me I’d only ever be loved if I made myself small. The mother who seemed to be fading into black and white. The sense that I was destined to disappoint and to be disappointed.

It fell away — all of it. All that was left was peace, clarity, the beauty of the dusk-painted valley, and the exhilaration of a reckless run through an unfamiliar forest that just as well could have ended in a broken limb.

As I sat there, two simple truths settled over me: I was grateful for my body, and I was grateful to be alive.

The pain arrived nearly four years later.

IRIS DENG/THE VARSITY

As the snow retreated and the wind blew more kindly, agony hit me like a hammer. It fell upon my joints, neck, limbs, and hands in unpredictable, asynchronous beats. There was fatigue too: a heaviness I couldn’t shake. Suddenly, this body, my body — this thing that hurt and protested and was both me and not me — became an enforced horizon, an inescapable vantage point on the world. This pain — what causes it, worsens it, calms it — has come to shape every facet of my life and my thoughts. It ebbs and flows, but even in its absence, its echo is resounding.

I have fibromyalgia. It’s a chronic disorder characterized by widespread muscle and joint pain, fatigue, cognitive issues such as ‘brain fog,’ and, although their exact source isn’t known, depression and anxiety. Most people with fibromyalgia have a litany of symptoms; no two people experience it exactly the same way. For me, I have a lot of the usual suspects: widespread pain that oscillates chaotically between dull, localized aches and lightning-fast lashes of agony that splinter across my body; extreme fatigue, as though I’m swimming through Vaseline in a space suit; and a wooly mental fog that descends at random.

Fibromyalgia is a chronic illness; it persists over time and has no known cure. There are only ways to manage and minimize the symptoms. Like many other chronic conditions, fibromyalgia is an ‘invisible illness’: its impact typically isn’t visible to the naked eye. All else being equal, sufferers tend to look perfectly healthy; there is nothing visibly amiss.

Though every person experiences chronic illness in a different way, I hope that my experience can shed some light not only on what it’s like to live with a chronic illness, but also on a deeper issue. Most of us, especially at a competitive university in precarious social and economic environments, are terribly unprepared to treat ourselves with kindness. At the end of the day, we all have to ask ourselves this question: are you ready to love yourself when everything, including everything you think you are, goes to hell?

I wasn’t. I’m still not ready.

IRIS DENG/THE VARSITY

When it comes to fibromyalgia, the idea of living ‘with’ a chronic illness can get quite literal. It’s hard to explain, but it’s rather like sharing a body with another person. There’s me — the reasonably well-adjusted, high-achieving, and with-it student — and the other one, my illness. It’s far from an even balance. I’m stuck in my body with something like an apocalyptically emotional two-year-old who’s prone to random meltdowns which rival the dynamism of unstable nuclear reactors.

A simpler metaphor: living with this pain is like being on the wrong end of a voodoo doll.

One way to think through the constraints of chronic illness is by looking at the number of ‘useable hours’ a person with a chronic illness has in a day. Before I got sick, I’d say I had between 10–12 usable hours total each day. These were hours in which I could study, attend classes, see friends, take care of myself, make food, read books, or exercise, with energy to spare. This was the time I had to live the way I needed and wanted to, effectively and healthily.

Now the number of usable hours I have in a day is unpredictable and, typically, fairly limited. On an uncommonly great day, I’ll have eight. On a normal day, I have six. And on my bad days, I have anywhere from two usable hours to none at all. Exceeding this vague limit every day has a ratcheting effect, decreasing my baseline of health and charging interest on the time I spend trying to function as a human in this world.

I often wake up with a sense of panic, wondering how on earth I am going to get through the day. Having a chronic illness involves making an unexpectedly high amount of mathematical calculations, though none of them are precise. My already-depleted energy minus class, readings, work, meetings, human interaction, getting from point A to point B and back again, equals an emphatically negative number.

Sometimes it is possible to take a step back and rest. Within the intense, demanding, and often de-personalized environment of this institution, I have often had to make a conscious decision to push myself to a place I know will cause me days of pain.

Bad days can happen at random, but they tend to cluster in periods of high stress. Indeed, almost all my symptoms are tied to stress, both physical and emotional. This is, of course, highly inconvenient; ‘stress’ is the university’s unofficial slogan. The periods with the highest stress of the academic year coincide almost perfectly with the periods in which I am least equipped to handle them.

Now, every semester, I play chicken with my body. The goal is to reach the finish line, in an ever worsening state of health and morale, without falling apart entirely. It’s not a very fun game, and it can’t go on forever; one day, I know I’ll lose.

IRIS DENG/THE VARSITY

Before I developed fibromyalgia, I had internalized all the worst ideas about personal value and success that advocates of mental health reform at U of T, myself included, critique as emblematic of our toxic campus culture and academic environment, not to mention our society and economic system at large.

I worked for the sake of working and I wore my exhaustion proudly, habitually pulling 12-hour work days. I stuffed my résumé with commitments and achievements in the hope that, one day, I’d look in the mirror and see someone I thought mattered. I sacrificed relationships, activities, and experiences for my GPA, waiting for a payoff that, it turned out, would never come — not like that.

I thought that if I pushed myself hard enough, I’d finally be happy. And not only that: I’d finally deserve to be happy. And then I got sick.

If I’d gotten 50 steps down the path, it isn’t that I’ve gone back 51. It’s just that I’ve been suddenly transplanted — quite violently, and with no small amount of protestation — to a different path entirely.

The achievements I’ve earned at university still matter; I just can’t cash them in. I can’t continue to push myself like I used to. But that’s the thing: I was pushing myself. I was harming myself, in a way, because I was convinced that it was what I had to do to earn the approval of others, this university, our society, and ultimately myself.

Now, I have to slow down. Indefinitely.

Slowing down, however, is far from easy — not in this society, this economy, or this mind.

We live in a world that prizes and rewards productivity and individual achievement, regardless of the cost. There are no institutionalized accolades to be won for treating oneself with kindness. A body that cannot meet the demands of the current system is, we are told, a body without much value.

The story of my illness is in many ways a struggle against a system that hasn’t made room for bodies that need rest. This also applies to essentially every other kind of body that isn’t white, able, neuro-typical, cisgender, thin, straight — need I go on? It is also a story of my own struggle to resist the ways in which I’ve internalized these ideas. I’ve long decried the way in which neoliberal capitalism and a world centred around work demand inhumane things of our bodies and minds. I’ve long held that a person’s value is intrinsic: it has nothing to do with what they can produce.

I was, however, saying these things from the privileged perspective of an able-bodied person. I still hold these convictions — more strongly, now, for having directly experienced a very visceral physical manifestation of the negative effects of the way the present system values productivity. Yet, actually applying my convictions to my personal circumstances has proven difficult to say the least. I have been routinely enraged at my body for its refusal to do what society demands of it; I have called myself worthless more times than I could count.

Overcoming this paradigm, however, is an immensely powerful act, both personally and politically. Or so I hope. In all fairness, my body hasn’t really given me much a choice.

IRIS DENG/THE VARSITY

I often hate my body. This hate is more than the passive and socially mandated displeasure I’d so far learned to feel as a woman. It is not me saying: “I hate my thighs,” or “I hate the shape of my eyes,” or “I just hate my right earlobe.” No, this hate consumes me, directing itself toward everything I am. It is also hopeless: the force of my anger only causes more hurt. And in any event, how wrong and pathetic — how small-minded and mean — is it to rage against something whose only crime is sickness?

I often hate my body, but I am learning to love it, too, like a child learning to walk: often falling and failing, descending into tears, perhaps feeling too scared to try again. And, yet, instinct drives it to do just that. Though I typically fail, I am likewise driven to treat my body and self with kindness by an instinct — a memory of a time before.

Before bodies — whatever they happened to do or not do — were something to be ashamed of. Before I expected anything more of myself than what I could give. Before I learned to see my body as my enemy, as something to be managed and overcome. What I wouldn’t give to be six years old again, tracing the lines of my palms with wonder. Or 10, cross-legged beside the soccer pitch at half-time, tearing into orange slices and letting the juice slide down my fingers in small rivulets of invitation for waiting honeybees. Or a baby, flexing my fingers and toes with a curious joy.

I remember what it was to be friends with this body.

IRIS DENG/THE VARSITY

In recent months, this illness has become less of a novelty in my life. The scars are turning to birthmarks; it has begun to grow with me, like two trees pressed together from the roots. Over this time my thoughts have often strayed to that day in the forest, nearly five years ago. In my worst moments, I have wished for nothing more than to return to that time, that place, that feeling of comfort and camaraderie with my body. But I cannot go back.

And there is good in this, I think, even though it came at an unfair price that I shouldn’t have had to pay.

I am learning a new language of success. It no longer means only a perfect GPA or being ‘busy.’ Each time that I rub my aching muscles without frustration, without anger at them for their pain, is a victory. I am learning to tell my body that I know we are both hurting, and that it’s all right. “What can I do to ease your way?” I ask. “I don’t blame you,” I say. “I’m going to do everything I can to not hurt you.”

This new language I am learning? I think it might be called kindness, or what Sonya Renee Taylor calls radical self-love: a return to our original state, before we were taught otherwise, of open and loving companionship with our bodies and selves. And although I am by no means an expert, I’d recommend you try to learn it too, or at least pick up a few phrases.

Now, as I write these words, my mind returns to that day in the forest once more. I cannot go back to that time. The place itself still exists, though, and there are many others that are equally able to touch my soul. Next time, I may take a bit longer to get there. I may have to rest on my way up, and maybe this body will hurt. Perhaps I’ll have to ask the people with me to slow down, to walk with me at my pace.

But I’ll get there. I know I will.