I Win: 20 Years of MS
Last week marked the 20-year anniversary of my MS diagnosis. As a society, we place extra emphasis on round-number anniversaries like the 20th. But for me, this one is significant for another reason.
Before I met my diagnosing physician, another doctor had broached the subject of MS with me. When I asked him for a prognosis, he said, “You have a good 20 years left.” So, for most of those 20 years, I set out to prove him wrong. And I’ve done it. I win.
Anticipate wonders, not misery
A couple of years ago, I began to question whether I had heard that physician correctly those many years ago. He may have said, “You have 20 good years left,” which is a whole different thing. That would speak to how long before MS might kick my ass and make life “not good.“ Did he get that right?
Despite everything, I still anticipate each day more for the wonders it may reveal than for the misery I might endure. So, I proved him wrong on whichever prediction he was making. I still win.
MS is unrelenting
My MS is quite advanced. It hasn’t killed me, but it will, directly or indirectly. The form of the disease I have, primary progressive MS, has rendered me immobile. I’m okay from the neck up, and for the time being I can manipulate my right hand enough to operate the joystick in my wheelchair, but that’s it.
Through the media, I’m constantly reminded that mobility and exercise are keys to a long, healthy life. Flip that the other way, and we can conclude that my life expectancy is lower because of my immobility, because of my MS. If you wanted to play over/under on another 20 years, I would put money on the under.
I’m a lucky guy
How have I made it work these 20 years? I think I’m supposed to say, “I learned that I’m stronger than I ever thought I could be.” But that doesn’t ring true. In fact, I never doubted my ability to take this on. Does that make me sound arrogant? I don’t feel arrogant but isn’t that exactly what an arrogant person would say?
It's just that I'm one lucky guy. I couldn’t have been better prepared for what was to come. My mother became a quadriplegic when I was five years old, due to an accident. She lived a remarkable life and proved to be the perfect role model, given what would befall me later in life.
Where you can find it, support makes a difference
I have a natural, neutral disposition that wards off depression and negativity. I haven’t suffered the depth of emotional trauma that most people would associate with my condition. On top of that, I'm not otherwise ill, financially strained, afraid, abused, hungry, or lonely. I’m definitely not lonely.
I have the best support team in the world. My friends, relatives, and medical team — I couldn’t ask for anything better. But it’s my primary caregiver, my wife, Kim, who has the greatest impact on my well-being. We met when she was 15 and I was 16. Pure luck. I happened to fall in love with my ideal life partner on the track team in high school, and that has made all the difference.
The art of practicing gratitude
I’m hesitant to advise others to be thankful for what they have when I have so much. But I’ve come to realize that a sense of well-being not only fosters gratitude; the practice of gratitude can foster a sense of well-being. And don't we all have things we can be thankful for?
MS is kicking my ass, make no mistake about that. But, 20 years later — I’m still here. And I’m not done yet.
Do you ever feel like your feet and ankles are burning on the inside but cold to the touch?