Ishmael, Ahab, and I: Why MS is My Moby Dick
I approach managing multiple sclerosis in the same way I approach writing in that I instinctively lean towards my strengths. Hindsight is one of my best, as is learning all about something of which I know nothing and then teasing out the subject as though I invented it. Mine is a searching, integrating internal process equipped with a reliable editor. That said, procrastination and intellectual laziness are up there, too. I know my limitations and can therefore wholeheartedly embrace humility once I get around to it. Writers walk a fine line between self-aggrandizement and self-loathing. So, too, people with MS.
Decisiveness is a strength that has always taken a high slot, though I am no trailblazer. I boldly go where most writers have gone before, but with my own little twist. Like Ishmael, the mysterious, journalist-like narrator who took to the sea in Moby Dick, I saw monster-wrangling as an adventure, something I could embark upon thoughtfully and report on as both observer and participant. I am generally open-minded and flexible, as an observer must be.
Starting Copaxone shortly after diagnosis was easy and novel. But four-and-half years later, in 2009, with most of my seven injection sites covered with lipoatrophy craters and hard-to-inject painful lumps, I had the worst relapse thus far and abandoned Copaxone for Rebif. I rejected that one after barely four months, too, fed up with the painful injections that I could only execute in a few remaining healthy patches anyway. Burned out and disillusioned, my mind banged shut on all injectables after that.
Starting Tysabri was a risky decision since death was a possible outcome, but I wasn’t intimidated. Others had gone before and lived. It was new territory, uncharted terrain my reporter’s mind could chronicle. I could once again be the biblical Ishmael, the desert wanderer, as well as Moby Dick’s Ishmael, the wanderer on the open sea. But new discomforts eroded my journalistic detachment. It took hours to locate a vein and as many as nine punctures to get the IV going. After a year of that nonsense, I became petulant, taken charge of my quest for the ideal weapon--and come up short. My objective Ishmael-like detachment gave way to single-minded obsessiveness and not a little paranoia. Not only was MS taking bites out of me, the innocuous injectables were disfiguring and the riskier treatments could rear up with an even worse bite. Now I was like Ahab, scarred and crazed and poised on the foc'sle, harpoon in hand, waiting. The whale had taken his leg and now he would take its life.
Unlike Ahab, I knew I wasn’t alone. The problem back then (2011, a mere five years ago, before the advent of oral therapies) was that the choices beyond the CRABs (Copaxone, Rebif, Avonex and Betaseron) were so new that there were no long-term studies showing how they might trouble us down the road. New drugs such as Tysabri dazzled like high beams on a late-model Mercedes. I felt like an over-the-hill deer that had no business standing in the middle of the road at night.
Crouched at the foc'sle, harpoon in hand, waiting for that chalky mug to break the surface. What was I waiting for? Not the monster, I had no fear of that, it’d been taking small bites out of me for years. For the first time, I was empty-handed. I waited, peering into the mist, searching for the biggest, baddest (but safest) harpoon insurance could buy. It would be two years before Tecfidera was released to the public in 2013. That’s the one that ended my two-year moratorium on DMTs. I took the blue pill and re-entered the Matrix.
Now it is late 2016 and my aspirations have morphed yet again. For me, everything is now in a gray area. I am 100 percent compliant with my DMT and symptom medications. Disease management is as banal and boring as watching grass grow. The pride I once felt by executing these small acts of compliance now barely registers at all. Like an illicit street drug, what had once sent me into the stratosphere with a single hit of doing right now feels as thrilling as a feather drawn across a numb hand. If I want to feel joy ever again, I’ll need a bigger hit. But there is none.
My life goal used to be happiness. I’ve always known what that means for me. It’s a centeredness, a calm, like a plumb bob that always hangs level despite how skewed everything is around it. Now my goal is to get through the day and maintain some semblance of a routine. Chaos is stressful; routine disarms it.
Most of us need some kind of buffer against the rawness of life. I know I do. I can still get completely absorbed in a story be it fiction or documentary, a funny interview on late night television, or a vintage jazz performance on youtube, and have it suspend the sulfurous, corrosive winds of reality for a few minutes. Thank goodness I know what entertains me, what I love, what I loathe, and what is best for me.
I am not like Ahab, after all. He hunts the whale in a misguided attempt to achieve peace through vengeance. He dies as his vengeful act catches him in its ropes, binding him permanently to the flank of the whale and drowning him.
Though I am bound to MS much like Ahab is to the whale, I’ll never drown. Somewhere along the way, I learned how to breathe underwater.
How many specialists did you see before finding "The One"?