Tuesday, December 19, 2017

An Alternative to Hope

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.

26 comments:

  1. Well said! Thank you!

    Linda Safran a.k.a.

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  2. This is your best post yet, Mitch. Fifteen years from diagnosis, I agree completely. It doesn't mean we stop using all the tools available to make our lives as good as we can, whether technology, medicine, the arts or entertainment. Acceptance puts us squarely in the mainstream of life, and that's just how I always wanted to live, but didn't know it.

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    1. I hope you don't Mitch: I put a link to your article in my Facebook timeline.

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    2. Daphne, I'm glad you liked this post. "Acceptance puts us squarely in the mainstream of life." Well said.

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    3. Ted, I certainly don't mind you sharing my link. The more people I can reach, the better. Thank you.

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  3. That's me. Acceptance is what I'm left with. It's sad in a way, I guess, but I enjoy what I can.

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    1. Ted, the only alternative is hopelessness, which makes acceptance looked pretty damn good.

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    2. Mitch, you have the best support system and the best damned attitude. Roll on. And Merry Christmas to you and Kim and your family.

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    3. Judy, I can't argue with you on the first part, and on the 2nd part… I do what I can. Merry Christmas!

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  4. Mitch, what you say makes a lot of sense. For any of us that have been dealing with this for years, Acceptance is an important part. We can refuse to accept what is happening, but that does not lead to a pleasant life. Until there are real answers to a better life, we need to find a ways to make THIS life acceptable. Thanks again for wise and comforting words, carry on Mitch, love your writings. Ken

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    1. Ken, living in the moment, in the present, "find ways to make this life acceptable." So true.

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  5. Mitch,Most eloquently profound piece that you have ever written. Deeply inspired.
    Hilda

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    1. Hilda, I'm glad you connected with this piece. I hope it brought you some measure of comfort. Thank you for the kind words.

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  6. Change the changeable, accept the unchangeable, and remove yourself from the unacceptable.

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  7. Well said, Mitch. Realistic. That said, for me, there remains a sliver of hope, if only so I inhabit a world of possibility, elusive though it might be.

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  8. A realistic and encouraging post. Thanks, Mitch. After seventeen years, I feel that 'acceptance' is a far better and stronger word for what sustains me.

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    1. Roland, I think hope may be the wisest approach for some other conditions, like an acute form of cancer that may either kill you or you will survive it. For chronic diseases, acceptance is more appropriate. I'm glad you have found some level of peace.

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    2. That is possibly true, Mitch. I accept my MS but I hope that my blood cancer stays at Stage Zero. (Yes, I have both diseases having thrown some bad dice or something.)

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  9. Such a great read on acceptance and moving on. I have been on my PPMS journey for 25 years and I let the disease just be a part of my life; making life adjustments along the way. However, I haven't given up on hope yet and even signed on for Ocrevus treatments, which should begin in the Spring of 2018. The biggest struggle I have is separating my religious hope versus my hope in medical research. Some believe you can't have both in your life when you are dealing with a disease that is incurable.

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  10. Diana, thanks for writing. I started my Ocrevus in July 2017. Long shot, but worth a try.

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  11. Great post! Hope to progressive MS is like an abusive lover. It draws you back in, again and again, with the promise that this time it will be different. Acceptance is like a comfy blanket-not earth shattering, but it will never break your heart. My well-meaning, compassionate neurologist, though, takes great offensive to my acceptance-he offers more and more toxic modalities with no real chance of improving my condition. But after 30+ years and dozens and dozens of treatments costing well over 50,00 dollars, I find acceptance is the most powerful medicine. Free and with no side effects, except a sense of calm.

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