By Marc Stecker
Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”
Among the countless aspects of life impacted by the MS are our relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.
Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being.
Nothing defines the notion of mortality more sharply than being diagnosed with a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.
For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche.
When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs for the illumination of self-awareness. As the Persian poet Rumi wrote, “the wound is where the light enters.”
MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those adornments often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world?
I discovered facets of my personality that had been long neglected and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.
Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns-and-rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within
*Marc Stecker lives with his wife in New York City. He was diagnosed with Primary Progressive multiple sclerosis in 2003, and started writing his MS themed blog, Wheelchair Kamikaze, in 2009. As the name of his blog implies, Marc enjoys scaring the bejeezus out of pedestrians on New York City streets by zooming past them in his power wheelchair. To date, there have been no fatalities.