More MS news articles for May 2002

My Body, My Prison, My Dreams

May 28th, 2002

The warm breeze embraced me as I left earth on that shining morning. I ran down a gentle hill, legs stretched forward, my arms extended out as wings. I soared in perfect flight.

Lifted gracefully above a flowered hill, my body was strong, my vision flawless, and I could see forever.

I waved to a farmer below as I gained altitude without effort. The grace of elegant motion was mine, and I was accepted into the billowy clouds.

Suddenly awake in the predawn chill, I stumbled on imperfect legs to a desk to record every detail of my glorious dream. Patting the surface, palms stretched wide, I searched madly for my thick glasses so I could try to read my own writing. Eyes that barely see and limbs that function imperfectly had made my improbable flight a magnificent metaphor for my search for physical power and that elusive grace.

A diminished man lives upstairs at my house. Multiple sclerosis and colon cancer have taken their toll on my body.

My psyche was not far behind. The battle for the body inevitably spreads to the mind. Hanging on to self-esteem becomes the endless struggle of the sick. Skirmishes are fought with invading cancer cells and myelin sheaths that peel from motor and sensory nerves, but another conflict rages in my head.

My old swagger, my boundless self-confidence are missing, and I want them returned to me.

The world was mine, once, and I traveled it widely, covering news for television. The lens was true, the focus sharp. Now I am gone from the business, and the shot threatens to fade to darkness.

Producers produce and are tough and independent, expected to jump from airplanes without parachutes and hit the ground running. I was young and foolish enough to do just that. My world is smaller now, as am I. My camera is turned inward, and I do not feel good about what I see.

I am a creature of a limited life, a man who cannot see clearly or walk strongly and, so, cannot participate in all too many of life's pleasures.

I no longer compete in the marketplace, and my relationship with my family has been altered.

The pursuit of self-esteem is a dangerous journey across emotional minefields. Coming to grips with who I am means redefining myself by highly personal and subjective standards.

Finding my way is measured by the distance between once realistic expectations and cold reality.

The long march is reflected in the eyes of my children, the arms of my wife. I am not in this alone. Loved ones map my life because our journey is together.

Objectives are no clearer than feeling better about myself tomorrow than I do today and seeing that level of comfort mirrored in those who matter the most. We make it up as we go along.

My children know what I can no longer do. When I throw a ball with Ben or Gabe, the ball is slowly rolled back on the ground, where it can be seen. My weak right arm tosses endless wild pitches that are forgiven and retrieved in good humor.

The kids never bother asking me to bat.

What tears at me is that I must appear to be so flawed in their eyes. What matters to them is that we are playing ball in the backyard at all.

"Let's go to a movie," Lily suggests. "We can take a cab," she adds in her upbeat way before I can remind her that I no longer drive. I am forever strapped into a passenger seat, riding shotgun as another holds the reins.

The shortest errands are not mine to run, a never-ending burden for my wife. I cannot stop feeling the child.

Dependence is dreadful for me, though only a routine for the others. To feel weak is to become vulnerable and feel bad.

What defines a diminished person?

Kicking a ball and pushing pedal to metal seem too trivial to make a satisfying life.

I want to believe that teaching my children about history and music, acting as role model and showing grace and humor in the face of adversity mean more than driving a car.

Being a good person must carry more gravitas than the ability to run, jump and play.

When my children are grown, what will they remember about living with me?

I worry that memory will focus on the diminished man I think I see staring out from the mirror.

I hope not.

Perhaps my children will forget to remember what I cannot put behind me. What I could not do may not have the staying power of what I did.

Those who love us do see past the problems. Who we really are stands not in our sneakers but in our souls.

Copyright 2002 The New York Times Company