Michael - 55

Three days before I sat for this photoshoot, in the late evening of yet another day of physical and emotional turbulence, while my now-former boyfriend was somewhere enjoying after-work drinks with a friend, I sat at the edge of my bed, in the shared apartment he and I will soon be vacating in order to live the rest of our lives apart, and cried like a wounded animal.

While I’ve always been the sort who surrenders easily to tears, the howls of grief blazing from my throat surprised me; I didn’t know my own body could produce sounds so feral, unrestrained, bereft of the smallest shred of hope. It was the sound of someone who, in that moment, felt a loneliness more intense than he had ever thought possible. From head to toe, I was an exposed nerve, red and raw and discharging angry sparks. It was my most explosive expression of grief yet in response to two and a half years of misfortune and suffering, the root cause of which may, barring an extraordinary reversal of luck, remain with me for the rest of my life.

In late 2022, I contracted COVID for the first time. It was an unremarkable experience, the symptoms easily controlled with rest and Tylenol; I tested negative seven days after it began. But within two months, the seemingly resolved infection brought about the relapse of an excruciating movement disorder in my neck that had been dormant for six and a half years, as well as a cascade of horrific long-COVID symptoms that ravaged my body and mind for the better part of a year.

Compared to many of the estimated 40 million people worldwide who are known to be, or have been, afflicted with long COVID, I’ve been lucky. My primary symptoms — which included an autoimmune condition that rendered me allergic to almost all food (I lost 35 pounds in three months, despite being sedentary the entire time), and fatigue so fierce that filling a kettle left me breathless — either mostly or fully resolved over a year ago. But my movement disorder, a rare condition called cervical dystonia, remains. Shortly over a year ago, I seemed to have recovered enough that I made an appointment with my doctor to determine a tapering strategy for the medications I was taking. But then I caught COVID again — so mild that I initially mistook it for a common cold — and the severity of my neck spasms almost immediately returned to square one. Despite transient periods of improvement, I’ve made almost no progress since.

It wasn’t long after this “relapse of a relapse” that I sat my boyfriend down, having observed that he hadn’t seemed his irrepressibly exuberant self for some time. “Are you happy?” I asked. And for the first time in the history of our relationship, he had no words. He simply stared, nervously, into the middle distance, and his silence provided as comprehensive an answer as if he’d pulled a prepared statement from his breast pocket. He still loved me, he said, but he couldn’t live the life he wanted, as an individual or as half of a couple, if he remained tethered to me and my physical restrictions. As much as I didn’t want to, I agreed with him: Life is short, and no one should remain in a relationship because of guilt or perceived obligation. We cried, we hugged; I walked alone to a nearby park where I’d spent time almost every day throughout the preceding year and tried to process the sudden knowledge that after four and a half years (some of which were the happiest of my life), we were done. But for various reasons, including my almost depleted bank account (my employer had laid me off several months earlier), it would be almost another year before we began making concrete plans to find separate homes. That time has now come. My heart remains shattered. Also during this period, for reasons related and unrelated to my health, four of my most valued friendships abruptly ended, a family member assaulted a facet of my character so explicitly that it probably scarred me for life, and a pair of antidepressants I reluctantly trialled did nothing more than amplify the crush of sadness I live with almost every day.

Dystonia is the third most common movement disorder after Parkinson’s and essential tremor — but the drop-off after essential tremor, if it were illustrated in a line graph, would look like a vertical plunge from the top of the Matterhorn. For this reason, very few studies exist; it’s too rare for most researchers to be bothered. But among the research that does exist, it appears that (1) onset occurs in the midst of, or shortly after, a traumatic event or a prolonged period of stress; (2) it afflicts a disproportionately large number of Ashkenazi Jews, of which I’m one (“chosen people,” my ass); and (3) the afflicted tend to share specific personality traits: highly emotionally sensitive, perfectionist, self-critical, hyper-vigilant, inclined to prioritize the needs of others ahead of their own…

Check, check, check, etc.

I’ve found that people within the dystonia “community” — fellow sufferers and specialists alike — often try to impress upon the afflicted that they shouldn’t blame themselves for their illness. But I struggle to accept this well-meaning offering of self-compassion. I’ve recognized the above characteristics in myself for decades, and experienced plenty of early warning signs as to how disruptive they can be if I don’t address them, including a period in my early forties when I was incapacitated several times a week with panic attacks and vertigo. I can’t help but feel that if I’d only taken steps to try to quash the self-loathing that has defined my inner monologue since childhood, if I’d loved myself enough to seek help, if I’d made it a personal policy to say no to people and situations I knew wouldn’t serve my best interests, this monster that has set up home in my brain would never have found the entrance. Instead, I sought solace in denial, avoidance, material acquisitions, and giving unconditional love to people who I knew had no interest in reciprocating.

Eventually, my nervous system had no more energy to defend itself and short-circuited in protest, and I have no way of knowing if it will ever have the capacity to repair itself. “Don’t blame yourself?” I don’t recall entrusting the steering wheel to anyone else before the car that is my body drove itself off a cliff.

Because I’ve never looked my age, and because I was a late bloomer in terms of many life milestones (I didn’t come out, have my first serious relationship, or gain traction in my career until my thirties), I’ve never felt my age. I never felt the sense of urgency many others would have, had they been in my position. It never felt as late as it was. But now, newly 55 (the first birthday whose number truly rattled me), I find myself thinking almost daily about the ceaseless rotation of the clock, despite the knowledge that members of my extended family — including many who haven’t taken particularly good care of themselves — tend to live into their late 80s and 90s. It doesn’t help that I now wake most mornings feeling 90-something myself, wracked with neuroplastic pain in the back of my skull, throughout my neck and back, and into my hips. There isn’t anything structurally damaged in me; my brain is simply sending unwarranted distress signals to my body, which results in the feeling of being broken in multiple locations.

The medical community is slowly beginning to understand that chronic loneliness and unhappiness are potential catalysts of physiological toxicity, and I don’t want to one day feel that something within me isn’t quite right, only for a medical practitioner to discover a malignant tumour the size of a Cornish game hen attached to one of my organs. To whatever extent mindset influences the presence or absence of disease, I’d like to think I’ve learned my lesson, and I’d now be very appreciative if I could put that lesson into practice and once again find love, open my mind and heart to experiences I might previously have avoided, and run to the top of a hillside and look down upon a picturesque expanse of nature and humanity, knowing that my life is once again mine to live to its fullest.

Less than a month from the time of this writing, I’ll be standing in my new apartment, surrounded by unopened boxes, knowing that in many ways I’ve once again returned to the starting gate. I hope I won’t be able to hear my neighbours through the walls, and that I’ll acclimate quickly to an otherwise unoccupied living space, knowing that no one will be coming through the door at dinnertime to distract or uplift me with anecdotes about their day. I hope my new neighbourhood, where I’ve never lived before and which I know almost nothing about, comes to feel like home.

But more importantly, I hope I soon come to feel at home in my body and my circumstances, whatever they may be. I may or may not be responsible for the events and decisions that caused my well-being to drive so wildly off course. Regardless, I’d like to believe that doesn’t mean I can’t, eventually, find my way back to the road upon which I’m meant to be travelling.

Music - Michael’s music choices during our photo session included Paul Weller, The Pretenders, Everything But The Girl and Kaidi Tatham.