Sometime last year, I was diagnosed with a spinal defect.
Illness, in both physical and mental forms, is an oddly lonely process; one that is hard to articulate because the experience is unlike all the others in early adulthood. In fact, it could be considered a milestone of its own, but one that is reserved for later in life, at least for those fortunate enough.
As I found out, grief is part of illness in many ways; but instead of the death of somebody dear, it was mourning the loss of who I used to be, and who I thought I would become. Joan Didion writes in A Year of Magical Thinking, “Grief turns out to be a place none of us know until we reach it. […] We might expect that we will be prostrate, inconsolable, crazy with loss. […] [but it is] the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself.”
In my life, independence and self-sustenance was a mindset I had assumed at a young age and thought I would never have to let go. I went on a 61-hour bus ride across the Appalachian region in America because it was the cheapest way to travel from Detroit to Atlanta. I went to Brussels by accident (I had taken the wrong train going to Lille) and returned to Paris in a car share with a stranger. I backpacked Iceland when I was 19.
As a young person, and even more so a relatively naive young person, illness was a foreign feeling. We are consistently aware of our mortality and yet utterly and completely blindsided by it all the same. We know, in some distant future, our knees will make sounds when they move and our hair will get thinner and our back won’t work like it used to. But these were all myths when I was just 20, 21, 22, or even younger—and a reality I didn’t imagine facing before even hitting the fabled quarter life crisis.
In many ways, my life has had its fair share of extreme emotions, extreme experiences in my life. And despite the very beautiful highs and lows I have been granted, the possibility of my autonomy being violently removed from me was one of the most debilitating moments of all. I had been privileged enough to assume and expect that I would be well for the rest of my life.
On the surface, I looked healthy; active, even. I mean, I was. I played team sports and I went to the gym. I solo travelled, that much was evident. I love(d) life with a dizzying intensity. I love to say good morning, I love to meet new people on whim, and I love everything life had to offer; big or small. To put it simply, I was still functioning, even if it was sometimes painful to do the things that I loved to do. It was jarring to even read signs promoting “not every disability is visible” and have it be relatable, because it seemed like a notion that was simply reserved for someone else.
Every doctor I met found nothing inherently wrong with my physical health, reducing my symptoms to mere coincidence. I hit all the targets on paper, so—of course—nothing could be wrong. Pain was one feeling, but to have that very same pain be denied was another anguish entirely.
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But it couldn’t be ignored how horrid, how very real it felt. The growing inability to sleep through the nights, and the dull aches that would be randomly triggered. I would walk and randomly lose feeling in one leg. If I laid flat on my back it would become unbearable. How was it possible that these were mere symptoms? I fell down a rabbit hole of all things related to the lower back, the possible diagnoses. Sciatica, slipped disc, herniated disc at worst. The ambiguity of what it was catapulted my stress. What nobody warned me about grief and loss is how it would absorb my whole world, how futile I would feel in the face of it all, and how everything else is reduced to mere inconvenience.
After a whole year of following up with several doctors and begging for something to be done, an MRI finally confirmed my worst nightmare: there was an issue with my spinal cord that had been unexpectedly triggered. The diagnosis rendered my feelings into fact, and gave my imagination a fractured form that I never actually wanted to believe to be true.
How do I explain to my fellow 20-somethings how numbered my days now felt? That it was a very real possibility that I would no longer be able to go to the supermarket on my own, or spontaneously meet at the bar, or even walk? The loss of autonomy was a harrowing prospect—with the worst case scenario being permanent damage, and the slightly less fear-inducing alternative being spine surgery.
If the best course forward was physiotherapy, then I might as well start on my own. Down the rabbit hole I went: nerve flossing, hip mobility, sciatica stretches. Terms I had never heard before, and words that sounded vaguely familiar strung together. I read medical journals, accounts from others who had gone through similar cases. An all-consuming fixation on everything and anything—for, if I could understand my prognosis in some way, then perhaps I would have more control over the result.
In grief, in loss, and in the conceived “hard times”, there is a perpetual need to search for the facts; to make meaning of it all. If I could account for all the possibilities, then perhaps I could control the outcome. It’s a mortal, futile way of being; and as illogical as I knew it to be, the equally mortal response was that I simply couldn’t help myself.
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The result was as follows: one hour of mobility training, followed by an hour of strength training. Four times a week. It was a mix of flexibility and a very apprehensive addition of weighted movements; enmeshed in the fear that I could risk making my back worse, and overridden by the notion that if I didn’t do anything at all, I definitely would.
Outside of training, I had so many follow-up visits that I could even track my progress and muscle growth through the frequency of my MRIs, no need for the gym mirror. I even had a stint in medical school, back to being a first year student for one week (I did have classes on mobility, where I was called upon by an unknowing professor). I became surrounded by other ladies going through the same process, albeit the age difference I shared with most of them. I watched women with greying tresses sustain their muscle mass, using only ten kilogram weights. Group Zumba lessons bled into gossip sessions about somebody’s grandchild over yoga. I became excited by the prospect that, if I made it out of this nightmare, I could be like them too.
Perhaps it was borderline obsessive, but for all the tumult, something was working. I stopped waking up in the middle of the night from the numbing, seemingly unavoidable pain. I stopped randomly cracking my hips and knees and back. I could go to the gym or to training or for a walk without fear of losing the feeling in one side of my body. Fear no longer consumed my every move. I felt alive! I am alive.
They say death is a galvanising experience, if you make it out on the other side. It renders the material meaningless and brings gratitude to simpler pleasures. I had no interest in being able to experience this life only as a so-called young person. The prospect of that was now unfathomable, and that I should even consider it was absurd. By coincidence, my own paradigm shift aligned with the newfound online mantra that 30s were the new 20s, except my 20s were now perennial. Truthfully, I found myself no longer resonating with the idea, at all, of maximising my youth. What I wanted now was to simply protect what I had regained.
My lust for life had only been renewed tenfold. I had witnessed the possibilities of what my life could look like in my 50s, 60s, 70s, and a little beyond that if I were lucky. Living well at every age—moving, experiencing, being alive—would be the most wonderful prospect of all.
