All About Multiple Sclerosis

More MS news articles for April 2004

Reluctant memoir

April 13, 2004
Joy Victory
The Journal News

Although multiple sclerosis ended Richard M. Cohen's career as a broadcast news producer, he can't deny that it has given him the chance to be a caring, if not doting, father and husband.

"I've never heard anybody say 'Damn, I spent too much time with my family,' " he says. "One of the interesting sidebars to illness is that it helps people see through the fog a bit and gives an enhanced view of reality. ... You fix your eyes on what's important."

In his case, what's important is his three adolescent children and his wife, Meredith Vieira, co-host of ABC's morning show "The View." The family lives along the Hudson River in Westchester County, in a cozy but spacious home filled with family snapshots and artwork by Ben, 15, Gabriel, 13 and Lily, 11.

But that's not to say Cohen is idle while the kids are at school and his wife is at work: He's now an acclaimed author. His memoir, "Blindsided: Lifting a Life Above Illness," (Harper Collins) debuted on several bestseller lists in January and is still selling strong.

In the book, Cohen describes his trials with illness and cutthroat broadcast journalism, which he sums up expertly with this passage from the preface: "I have passed from newsrooms through operating rooms to a more reflective existence."

He focuses on his struggle to accept living with MS, a lifelong disease that progressively damages nerve fibers. Over a 30-year span starting in his mid-20s, Cohen lost the sight in one eye, has had off-and-on muscle weakness and underwent lots of clinical experimentation by doctors, who still don't have many definitive answers for people with MS.

While the physical ailments were aggravating, he says learning to rise above them was altogether more difficult an effort otherwise known as coping.

"The final battle of illness is for the high ground of emotional health, to accept limitations and pursue the dream of a successful life," he says in the memoir. "More succinctly, my crusade is to make peace with myself."

He also learns that life is uncertain, and sometimes extremely unfair: In addition to having MS, Cohen suffered through two bouts of aggressive colon cancer, enduring such embarrassments as an ileostomy bag, which is used to collect waste. ("This was no goody bag," he jokes).

In addition to dark humor, Cohen describes the inexplicable medical attacks with declarative candor. Here's his reaction to a second diagnosis of colon cancer:

"The cancer indeed had come roaring back, to the site where the surgeon had gone, cutting out the malignancy and calling me cancer-free. This turn of events was hard to believe and almost impossible to put into perspective," Cohen writes. "I had not made it a full year. I just sat, feeling paralyzed and staring out at the river. A barge was struggling up the Hudson. I always seem to be moving against the current, I thought."

Yet, somehow he refuses to fill the book with lamentations, deciding instead to share his methods of coping. Anger and denial only fully give way to acceptance when Cohen started writing a periodic newspaper column in The New York Times on his experiences in 2000.

"That process was enormously useful. I sat down with the kids to interview them. They opened up and said a lot of tough things to me about how I had been," he says. "I only saw my despair, and not their needs."

In the book and even now, Cohen does not hide his disdain for doctors, who frequently treated him "like an inanimate object," he says. He blames this on medical schools that give students few skills to deal with depressed, angry or confused patients.

"I don't think doctors spend much time working with patients to anticipate the emotional fallout. Illness touches every facet of your life relationships, spouses, careers, kids," he says. "You are dealing with anger, disappointment and frustration. Doctors too often, in this high-tech world, are stretched thin. They become Volvo mechanics. They're great at keeping the machine going, but they don't take a qualitative approach, and they could involve families much more than they do. One of the great lessons I've learned is illness is a family affair."

His book may help change the doctor-patient relationship. Harvard Medical School approached him about being part of an education program on what it's like to be a patient, he says. But that wasn't his goal. He wrote the book for people with chronic illness.

Its rapid success emphasizes the vast number of patients and family members coping with a lifelong disease, he says.

"I have gone to (book promotion) forums where a surprisingly large group of people showed up. And they were in walkers, in wheelchairs," he says. "They were there to share their story and hear mine. ... Although the specifics of the illnesses are different, the emotional battlefields are very similar.

"People who deal with these problems, to a large extent, share the struggle to cope and live lives that are normal."

Copyright © 2004, The Journal News