about the experience of chronic illness

December 28, 2002

i KNOW OF A FELLOW WITH ms AND i FORQWARDED THIS; THANKS. MARIE

Crew,

While our NF2 may not be exactly invisible, I thought some of you might appreciaite this article from the NY Times, as I did.

Barbara B.

Diseases That Stay Out of SightBy RICHARD M. COHEN

lean at last. The third colonoscopy was a charm. Two bouts of colon cancer have ended, the curtain fallen. The houselights are up. Nobody has noticed that I am still on stage. A chronic illness remains. Multiple sclerosis, my longtime companion, has resumed its lowly position in the hierarchy of suffering.

Chronic illness is driven from the stage by the acute threat. Its plotline is tedious because action is slow and the story rarely varies. Attention spans are short, and the drama can take years to play out. The brush with the white hot health crisis puts the chronic condition in its place. When recovery from a life-threatening illness comes, that tired old standby remains.

Turning tragedy to comedy is one option for coping. The morning I tried to walk through a large mirror, thinking it was an entrance to a dining room, entertained the boys behind the bakery counter. They knew nothing of my legal blindness. I could write a guide to women's bathrooms I have accidentally visited. Creeping, crawling illness takes me to the theater of the absurd. Belly laughs sustain me.

There is a plodding quality to the slower struggle, one that frequently lasts a lifetime. Chronic illness becomes prosaic, made clear by the contrast with more exciting cancer, which wins in the ratings every time. Cancer brings a sick glamour to its victim

Cancer survivors, and I am one, are wrapped in a cloak of tinsel that wears thin soon enough. Life-threatening cancer tends to resolve itself. The chronic condition is a journey without end. Many cancers today are treatable and become chronic more than killer conditions, to be managed and endured and survived.

Orphan afflictions become the long haul. They have little cachet but afflict the many. These diseases are boring, not the stuff of movies and plays, so usually they must rest outside the culture. Actresses succumb to unidentified cancers regularly. The Big C is a proved box office winner. Remember the last hot big-budget film about a man with crippling arthritis or a woman with excruciating shingles? I don't.

One president endures M.S. in prime time and we learn little about the disease. Talk of his shredding brain and a presidential blackout do not ring true. No matter. M.S. is but a television device, meant to entertain. And a public does not understand or appreciate the pace or pain of slow sickness.

Many diseases compromise the ability to eat and digest, to walk and speak and a host of other functions. These conditions remain private because most of us tire of talking, and no one can see the truth of another person's life.

My friend Don Gibson, a senior executive at the National Endowment for the Humanities, left his job because of a digestive tract ailment, Crohn's disease. Later, his open heart surgery became the front page story to friends and acquaintances. No one has bothered to pay much attention to the Crohn's, and everyone is quick to jump to conclusions. "It goes one of two ways," Don says. "If you appear weak, people think you are useless. If you are functioning, they think nothing is wrong." Neither is the case.

"If more of us died," says my pal es, who also has M.S., "people might sit up and take notice." , a lawyer and political strategist, gave up a career in the law because of complications of M.S. "The disease is slowly stealing from me. You know. We just live with it."

That, we do. We are left to battle insurance companies that resist the steady costs of endless care and the employers who quickly tire of our bad days. We are compromised. We do not want to be wretched refuse. We do not demand the concern of others. Benign neglect would be just fine.

We become a hidden population. We are invisible, except to our bosses and colleagues and others we engage. Folks do not want to know. Those who love us do but cannot intercede.

I have trouble walking. Don can barely eat. has memory problems. We will live another day, but the routines that others take for granted will challenge and occasionally conquer us. We can only acknowledge our difficult journeys to ourselves in a whisper and move forward with humor and grace.

December 28, 2002