MS is some scary stuff. There’s no getting around it. You can insulate yourself in medical research, armor yourself with objectivity, and shield yourself with detachment, but at its core, MS is still some scary stuff.
The disease itself is terrifying, the impact it has on people’s lives is horrifying, and the treatments used to combat it are frightening. As much as I try to keep a lid on it, every so often the lid cracks open just a little bit, and fear comes blasting in, like pressurized water through a breach in a dam.
People with MS must live with the disconcerting knowledge that some unidentified enemy is chewing away at their nerve cells, literally eating holes in their brains. We talk about “lesions” and “myelin” and “white matter” and “gray matter.” But when you strip away all of the clinical medical jargon, you’re left with “holes in your brain.”
Our brains are who we are, the storehouse of all of our knowledge, and the repository of our personalities. They’re what make us human, so in a very real way, MS threatens our very humanity.
Out of sheer self-preservation, we do our best to avert our eyes from these realities, but they’re our constant companions, always just a momentary lapse in vigilance away from sneaking in and slapping us hard.
The destructive potential that the disease has on the foundational elements of its victims’ lives is without doubt appalling. Careers can be extinguished, relationships smashed, dreams and expectations laid to waste.
At the time of diagnosis, most people with MS lead seemingly normal lives, driven to seek medical help by either the gradual or sudden onset of symptoms, which often manifest as nothing more than what initially appears to be a mere hiccup in the flow of daily routine.
Soon enough, though, that slight limp, that blurred vision, or that annoying numbness comes to be understood as an ominous harbinger of the possible physical cyclone to come, the implications of which, when stared at straight in the eye, can be overwhelming.
The medical procedures and treatments that come bundled with an MS diagnosis are also fraught with trepidation. I distinctly remember the jolt of fear I felt when my mind slowly deciphered the phrase “lumbar puncture” to mean “spinal tap.” Although I’m not particularly claustrophobic, I know many people with MS for whom the idea of being stuck in the confines of an MRI machine for 90 minutes is panic-inducing.
The drugs offered to us have side effect profiles that sometimes seem worse than the disease itself. Who among us relishes the idea of having the intricate workings of their immune system — that poorly understood and delicately balanced product of millions of years of evolution — fundamentally altered by chemical compounds whose mechanisms aren’t fully comprehended even by those who invented them?
Taking it day by day
How, then, does one not collapse quaking under the fear factor of multiple sclerosis? Of course, each of us reacts differently, and we all cope in our own unique way. Some go into deep denial, preferring to simply make believe that everything is OK. Others, like me, choose to go toe-to-toe with the thing, and immerse themselves in the research and realities of the disease, sometimes obsessively so.
We all eventually learn to take it day by day, often with a large dose of gallows humor thrown in. Most of the fellow people with MS that I’ve met are a pretty funny lot, whistling past the graveyard determined to have a good laugh at the expense of the disease, raising a sharp-edged middle finger to the illness and the universe that provided it.
Some find solace in religion, others turn away from it. Mostly we soldier on, unwilling members of a secret society whose personal rituals and behaviors remain unknowable to outsiders, no matter how well-meaning they might be.
We adapt, sometimes on a daily basis, to the changing circumstances within, subtle changes that aren’t so subtle to those going through them, but often seem maddeningly invisible to those on the outside looking in.
Thankfully, I’ve found that in almost all things MS, the anticipation is far worse than the reality turns out to be. That spinal tap, the prospect of which made me light-headed with fear, was really no big deal.
I know there are others who disagree, who’ve had a hard time with their lumbar punctures. But for whatever reason, the procedure hardly fazes me. Not that I’d recommend one as a recreational activity, but I’d rather have a spinal tap than dental work.
Conquering the wheelchair
The prospect of abandoning my career filled me with dread, but when the moment finally came, the overwhelming feeling was that of relief. The sudden freedom from the daily grind allowed me to rediscover myself and tap into talents and parts of my personality that had long lain dormant and neglected.
If I’d been told 10 years ago that within a decade I’d be forced to rely on a wheelchair, I quite honestly might’ve said that I’d prefer suicide. I put off actually getting the contraption far beyond the point that I needed one, and when the day came that it was delivered and sitting in my living room, I sat alone looking at it for quite some time, mulling my new normal with a mixture of defeat and resentment.
But the infernal chair turned out to be liberating, my ticket back into the world, a transformational vessel that changed my perceptions of myself and my predicament, and allowed me to pursue creative passions that I thought the disease had stolen for good.
And, much to my surprise, driving the thing turned out to be (dare I say it) fun, whizzing past startled pedestrians on the streets of New York the perfect outlet for the naughty 5-year-old that was cooped up inside me, bound by the constraints of adulthood for far too long.
When I was a kid, I was an anxious and neurotic little boy, and my mom would often sing me a song from “The King and I” that went like this: “Whenever I feel afraid, I hold my head erect, and whistle a happy tune, so no one will suspect, I’m afraid.” Mom had her own troubles and reasons to be afraid, but she too soldiered on. Sometimes, the only way to be brave is to act brave.
MS is some scary stuff, and fear might as well be listed as one of its symptoms. But fear can be conquered, and every day, in the people with MS I know online and in real life, I see a quiet courage that’s constantly put to the test but rarely wavers.
In the end, we live each day as best we can — MS and the fear that comes with it be damned.
This article originally appeared on Wheelchair Kamikaze.
Marc Stecker is the author of Wheelchair Kamikaze, and has been living with multiple sclerosis since 2003.