Struggling to stay standing

I’ll be on my feet as long as I can.

by Richard M. Cohen

Multiple sclerosis becomes a process of elimination. We do. Then, we cannot. Many of life’s little tasks or treasured activities go missing in action, often lost for good. Progressive diseases progress — what a rude awakening. We are traveling a one-way highway. The changes can become deep disappointments that linger for a lifetime. We are barely seen by an indifferent public. The chronically healthy too often avert their eyes.

Yet some of us are fighters. I am one of those, and I do not know why. I suppose it is in my DNA. I was knocked down by the diagnosis in 1973. I have had plenty of time to cultivate my frustration over the years. I have written angry books and articles, throwing down the gauntlet, as if that makes a difference.

I cannot run or walk normally, and I continue to be blind as a bat. We can adapt, but we cannot overcome. I am not sure what the point of the struggle is.

Still, those who dig their own graves and play dead perplex me. I know good people who see themselves as victims. They feel sorry for themselves and wonder, why me? I ask, “Why not me?” Someone will be dealt that card.

I hid my condition as I built my career. Eventually, the “CBS Evening News with Walter Cronkite” hired me. A poll had decided Cronkite was the most trusted person in America. I felt dirty but was not about to reveal my illness until I proved myself. I waited one year before coming clean. By then, I had built strong relationships with my bosses. Still, the process was nerve-wracking. I promised them I would not take on any assignment I could not handle.

My years in the news business, covering wars and presidential elections, were powered by my drive to succeed. That required a healthy dose of denial.

I passed myself off, at least to myself, as normal. I took a lot of chances and loved it. That denial allowed me to live my life. What is wrong with that?

Some of us learn to be fighters. That is instinctive. I have no illusions about beating this neurological nightmare. I do know that in the end, I cannot win.

Yet MS, in part, is a mind game. If we believe in ourselves, we can go the distance. We are more resilient than we believe.

I have no intention of going gentle in any passive posture. I believe in the fight. Many do not understand. Attitude is a player. Some see how difficult moving around — merely walking — can be for me. I have graduated from cane to walker and occasionally the dreaded wheelchair. I hate them all.

Sometimes, family and friends suggest that I cut myself slack and sit. I don’t think so. I am fighting to stay on my feet. Every time I agree to sit in a wheelchair, I think I am losing ground. It is psychological. I believe staying on my feet, even stumbling along, toughens me and keeps me going. I regularly get up from the computer and just stand. If I can make it for five or six minutes, that is a victory. It is small, but I take what I can get.

I know how much family and friends care. Members of my family are securely joined. They have license to speak their mind. We are bonded. Friends can find themselves on thinner ice. I guess my mind only opens so far. Many times, their gestures feel like well-intentioned coddling.

There is nothing fragile about my family. Our well-defined culture celebrates the freedom to express ourselves freely. But when friends advise me on how to live my life, I get testy. I do not tell them how to live.

I mind my own business and, in my head, I urge them to do the same. Frankly, I believe people often project their own fears onto me. I don’t need that.

I just want to live my life. That is all. My common sense is intact. I trust myself. When my first book, “Blindsided,” was published in 2004, Barbara Walters interviewed my wife and me for a segment on “20/20.” Barbara just could not understand why I continued to take subways to move around New York City.

“Why do you do that?” she asked disapprovingly.

I paused. “Because I can, Barbara,” I answered calmly.

I cannot challenge myself the way I used to. Occasional car services have replaced the underground railroad for me. I miss my subterranean adventures. I do know the time has come to get used to my limitations and move on. Don’t hold your breath.

Richard M. Cohen is a New York Times bestselling author who lives outside New York with his wife, Meredith Vieira.