July 7, 2009
After decades dueling with multiple sclerosis and attempting to live gracefully with the ambiguity of uncertainty, my dance of denial has ended. The music has stopped. For the first time in my long siege, I am facing myself and am terrified. The MS has turned treacherous.
My vision is slipping away, piece by piece, fading to opaque at modest distances. The exquisite detail of life is gone. The world blurs with a new momentum. I do not know where or when, even if that free-fall will hit bottom. Multiple Sclerosis attacked my optic nerves many years ago. Peering through fog feels old and hits hard as new every day. And my spirit suffers.
I am a journalist. Eyes and ears on the ground. I have covered wars in the Middle East and Central America and reported events as diverse as the flight of the first space shuttle and the rise of the Solidarity trade union movement in Poland. Always, I found turf on the edge. I needed to prove to others – or more likely, to myself – that I could do what others so ably took on. I wanted to know life in the crucible.
And I learned to live by my wits. Isn’t that what the seriously sick do everyday? Twice I have survived cancer, which only made the MS more difficult to control. At the end of that ordeal, I walked away, damaged and feeling emotionally indestructible. I was determined to win, never willing to admit to myself that long ago, the deck had been stacked against me, and happy endings were unlikely.
What is winning, anyway? My vision may be deeply flawed, but in my mind I see clearly. Winning is living a good and productive life. Winning is enduring trials with grace and dignity. My family is healthy, intact and successful. Doesn’t that constitute victory?
Stay positive, I advise, in endless conversations with myself.
I believe I am not the only ailing individual who feels fear. More than 135 million Americans live with chronic conditions. These illnesses may be managed but never cured. Our ranks swell as we age. The ability to cope may reveal who we are and what construction materials were used to make us. I want to be earthquake proof. Yes, I am shaking now. Maybe that is my new dance.
I have written two best sellers about coping with chronic illnesses. They sold well because people want to hear each other’s stories, and we care about issues of illness. This column is devoted to mapping the journeys of the chronically ill as we navigate rough waters.
We fight on many fronts, reaching beyond the chronic conditions themselves. We must grapple with our own demons, the frequent loss of self esteem, lagging confidence in ourselves that should tell us to face the world and seek what we need in life. Go get it, we all want to say.
Long ago, I vowed that limitations in my life would not be self-imposed. I am a resourceful fellow. I would lift my life above my problems. Too often, self-confidence ebbs. And we stop challenging ourselves. I traveled the world in the news business, searching for great stories and high adventure to broaden myself and keep pushing forward.
To live well with a chronic illness largely is a mind game. When asked to counsel young people with any newly diagnosed chronic condition, I say to frequently panicked persons, your first appointment should be with yourself. Think about who you are and how you want to live. How will you make the most out of your life now? Do not define yourself by a disease or stifle your dreams with visions of possible outcomes.
When I married Meredith Vieira, I was the big senior producer, she the promising little correspondent. We all know where things went from there. I am lucky Meredith still has time for me, though it most certainly is not in the morning. Illness is a family affair, and children of any age humble a person who is sick. Self-absorption can follow closely behind illness and cannot be allowed.
I lost my bearings with my family when I had colon cancer. My anger at the world hurt my children. Too often, we, the sick, withdraw and feel isolated. Illness can be a lonely experience. I am here to say we are not alone but a community, and we stand together.