The issue of my worsening disability rarely comes up in polite conversation. On those occasions when it does, well-intentioned people, restrained by propriety, offer sentiments like, “One day they’ll find a cure, Mitch. Don’t give up hope.”
Hope. It is a concept no less hallowed than love, peace, kindness, and for some people, faith. I don’t question anyone’s sincerity when they prescribe it for me. Because I suffer from a chronic, incurable disease, however, I find hope routinely over-promises and under-delivers. In my long list of coping mechanisms, hope ranks near the bottom.
I was diagnosed in 2001, purchased my first wheelchair in 2008, and by 2016 I could best be described as a quadriplegic. My tormentor is a nasty strain of MS called primary progressive multiple sclerosis, and it’s kicking my ass.
By our nature, humans are drawn more to stories than statistics. We are motivated by narratives that touch our heart, rather than truths that constrain our dreams. Here’s the truth: modern medicine is chipping away at the edges of illnesses like MS, Parkinson’s, ALS, Alzheimer’s, and more, but we are not finding cures. Our narratives still don’t produce happy endings. For people with chronic, incurable diseases like mine, hope is not justified by reality.
I have subjected myself to so many treatments over the years — several out of pure desperation — all to no avail. My disease marches on. If I had invested emotionally in the success of these trials, I would have had my heart broken time and again. After one of my early treatment failures, I discussed the concept of hope with a fellow MS patient who suggested, “If you don’t have hope, you don’t have anything, right?”
He could not have been more wrong. As the years passed, and the disease ravaged my body, I remained in relatively good spirits, even though I knew I might never get better. I came to understand that a lack of hope does not necessarily lead to hopelessness. Sometimes acceptance fills the void.
Hope is the sexier cousin of acceptance. On occasion, it produces spectacular results. Books and songs have been written about the power of hope. Yet it is capricious. Acceptance, on the other hand, does its work in the background, steady and true. I learned the power of acceptance from my mother. She lived in a wheelchair for 39 years, not because of MS but a spinal cord injury.
With acceptance, I don’t waste emotional energy lamenting what might have been, envy what healthy people can accomplish, or ask “why me?” With acceptance, I no longer consider my old life as the normal I must return to. Instead, I consider my current life as the normal I must adjust to.
I’m grateful for having enjoyed as many healthy years as I did, for my family and friends, for technology, which helps me navigate the world without the ability to move my muscles, and so much more.
Despite my pragmatism, I am not devoid of all hope. I keep one ear to the MS research world. I evaluate each potential treatment on its merits. During these assessments, I sometimes, against my better judgment, imagine what success would look like. Hope is such an opportunistic emotion that it injects itself where it’s not wanted. But, to the extent I can, I keep hope at arm’s length. Yes, I’m confident that a cure will be found one day. I just doubt it will come soon enough for me. If I’m wrong, and a cure bursts upon the scene, I’ll gladly recant my position on hope, admit my mistake, and make a heartfelt apology to anyone I led astray.
Give hope a chance? Sure, if you are so inclined. But if you’re in a situation like mine, I say give acceptance a chance. It’s a powerful alternative.