What If…?

Originally published March 2001

leap-into-mysteryby Philip Simmons

I was 35 years old in 1993 when I was diagnosed with ALS, or Lou Gehrig’s disease. Until then, life was going great. I was on the tenure track as an English professor at Lake Forest College, had a wonderful marriage and two beautiful children, ages 2 and 4. My lawn had the proverbial greener grass that always seems to grow in someone else’s yard.

But this pretty summary, the sort of thing you’d read in a college alumni bulletin, didn’t tell the whole story. It didn’t tell of the sour stomach, bleary eyes and unsettled sleep with which I’d purchased success. And my spiritual life, important to me in my earlier years, had been pushed aside. I just didn’t have the time.

Age 35 is a hinge year, half of our biblical allotment of threescore and ten. Especially for many men, it’s a year when — I’ll be polite — “stuff happens.” It’s the age at which Dante makes his journey into the inferno.

I guess it was time to make a journey of my own.

Update

Philip Simmons left as his legacy the wonderful book Learning to Fall: The Blessings of an Imperfect Life, which received wide critical acclaim for its clear-eyed journey through “the harrowing business of rescuing joy from heartbreak.” Dubbed “a spiritual handbook for mortals” by one reviewer, the book is still in print and available from Amazon and other booksellers.

A few months before the onset of my illness, I found myself pausing on the landing of my stairs, looking out the window at a gray November day, cold rain soaking the ground, saying these words to myself:

Rain is falling on the earth.

Surrender your ambition.

If that was my spirit whispering to me, I didn’t listen. Amid the din of success, my spirit had to do more than whisper.

It took the patient explanations of several Harvard-trained neurologists to get my attention. I’d be dead within five years, they told me. My muscles would waste away while my mind remained intact, leaving me trapped in a body that could not move, speak, or, finally, breathe. Welcome to the inferno.

By now I’ve outlived the doctors’ most dire predictions. And though I’m currently in a wheelchair and can’t lift a Kleenex to my nose, I’ve also outlived the sense that my situation is so unusual. We live in bodies, after all, whatever their condition. And it is the nature of bodies, soon or late, to fail. Even the healthiest of us is, as the poet William Butler Yeats says, “fastened to a dying animal.” Those of us with terminal illnesses merely are the blessed — and I mean blessed — with having the facts of our mortality held constantly before us.

So now I’m asked, if medical science could cure my ALS — through gene therapy, perhaps — would I want to be cured? Because the answer to that one is a quick, emphatic “yes,” I’ll ask a more difficult question. Suppose a cure had been available at the onset of my illness. Knowing what I know now, would I choose to avoid this illness, losing all the valuable lessons I’ve gained through living with it?

From an ethical standpoint, I must once again answer “yes.” I’m not in this life alone, after all. As a responsible husband and father, I couldn’t choose to suffer this illness, no matter the transforming personal growth it has brought me. One of the things I’ve learned is that we’re here to serve others. When the words “surrender your ambition” bubbled up from my subconscious that day, they were calling me to set aside the needs of my ego. That didn’t mean I had to stop working or doing or accomplishing things in the world. But it did mean recognizing that service to others is the highest form of service to oneself.

So the very wisdom I’ve gained by living with my illness would make me choose, if I could, to avoid that illness, hoping that I could learn my life lessons in some less drastic way and thus live a longer life of service.

But I try not to play these “what if” games. Peace comes from accepting my condition and moving forward from there. The journey goes on. Dante made it out of the inferno, through purgatory to paradise. Mostly, I’m in purgatory, I guess, stuck in a body that doesn’t answer the body’s needs. I have days, plenty of them, when I mope and moan and wish I could more effectively kick the dog.
But there are moments, ordinary ones — watching my daughter comb her hair, my son read a book, my wife settle a cup in its saucer — when I’m filled with a gratitude that lifts me beyond my limitations, and I feel I’ve already gained my perch in paradise. At such times I wouldn’t trade my life for any other.

UPDATE
Philip Simmons left as his legacy the wonderful book Learning to Fall: The Blessings of an Imperfect Life, which received wide critical acclaim for its clear-eyed journey through “the harrowing business of rescuing joy from heartbreak.” Dubbed “a spiritual handbook for mortals” by one reviewer, the book is still in print and available from Amazon and other booksellers.

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