A man looking out over the ocean in his custom wheelchair

When Hope Is Not Enough

I was diagnosed with primary progressive multiple sclerosis in 2001, purchased my first wheelchair in 2008, and by 2016, I could best be described as a quadriplegic. I’m in rough shape.

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.”

I need something more than hope

Hope. It is a concept no less hallowed than peace, love, or 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. Hope is not enough. I need something more, and I’ve found it.

I don’t wake up each morning hoping it will be the day they find a cure. In my long list of motivators and coping mechanisms, hope ranks squarely in the middle of the pack.

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 endeavors, 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. Instead, it led me to acceptance.

Finding acceptance

Acceptance should not be confused with surrender. Surrender carries a negative connotation. “I give up. Do with me what you will.” Acceptance carries a neutral connotation, “If this is my life, then so be it,” or even a positive connotation, “If this is my life, I will make the best of it.”

Hope is the sexier cousin of acceptance. On occasion, hope produces spectacular results. Books and songs have been written about its power to uplift and motivate. But while hope entices us with its siren song, it can be capricious and unreliable.

Acceptance, on the other hand, does its work in the background, steady and true, humble and earnest.

I find the value in my new life

With acceptance, I don’t expend emotional energy lamenting what might have been, envy what healthy people can accomplish, or ask “why me?” With acceptance, I don’t long for my old life. I find the value in my new life.

I haven’t given up all hope. I continue to keep one ear to the MS research world. I evaluate each potential treatment on its merits. But I don’t rely on this hope to motivate me. I’m not emotionally invested in it. I keep hope around for practical purposes, so that I don’t miss an opportunity for a treatment that may work.

The challenge for all of us is to occupy that space where acceptance and hope happily coexist, and where we can draw from each as needed. Acceptance is about today. Hope is about tomorrow.

I spend most of my time living for today.

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