Neurology Now:
doi: 10.1097/01.NNN.0000286026.36036.c6
Feature: Richard Cohen

Living in Denial

CAJIGAL, STEPHANIE

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Richard Cohen's Strong at the Broken Places: Lifting Lives Above Illness is due to be released in January 2008 by Harper Collins.

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Abstract

Journalist and producer Richard Cohen has built a career around uncovering the truth. But he knows as well as anyone the power of refusing to accept “reality.”

Sigmund Freud called it a defense mechanism, a self-deceptive technique to manage stressful situations. Denial, according to the father of psychoanalysis, is usually unhealthy and destructive.

But for Emmy award-winning television news producer and veteran journalist Richard Cohen, who has battled multiple sclerosis as well as two bouts of colon cancer, denial has also been a great coping device.

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“Letting the disease get to you, letting it define you, putting up limitations even before they exist is all going to keep you down, to keep you from living the life you want to live,” he says.

Cohen was diagnosed with MS in 1973 at age 25, just as he landed a plum position with ABC News as an associate producer covering the Watergate hearings.

“I don't deny that I have the illness,” he says. “I did for a while, and I think everybody does. But you come face to face with the symptoms soon enough. You'd be really out of touch with reality if you tried to play that game.

“Still, what I denied then and what I deny now is the inevitability, the certainty of possible outcomes. I know I deteriorate because it's a progressive disease, but I'm not going to make assumptions about wheelchairs and not being able to go up steps and not being able to work—things like that,” Cohen says.

Conflicted about whether or not to tell ABC about his condition, Cohen turned to his father, who also had MS, and whose mother had MS. The elder Cohen told his son to keep his news a secret.

“I thought he was overreacting and that it was a generational difference between us. I believed people would be accommodating, flexible, and decent about it,” he says.” I've got to tell you, that hasn't been my history.”

When he was laid off from ABC because of budget cutbacks, Cohen attended Columbia University's Graduate School of Journalism. After graduation in 1976 he was denied several jobs because of his MS, he says. It was then that his father's advice began to sink in.

“Once I got jobs it was never a problem, but it was because I worked hard to go a distance perhaps no one else would go,” he says.

Later, when he landed a producing job on CBS Evening News with Walter Cronkite, Cohen, who had lost vision in his right eye in 1973, had to devise a way to pass the company's required physical. He recounts the episode in his memoir, Blindsided: Lifting a Life Above Illness (2004): “I took the exam, patch over my right eye first. ‘Now cover your left eye,’ the nurse instructed. ‘I just did,’ I answered sweetly. ‘My mistake,’ she responded, with a smile. ‘Then cover your right eye.’

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He waited a year before telling his superiors about his condition. “I worked really hard that year and made myself indispensable. Then I went to my bosses and I said, ‘I have to tell you this because you're going to find out sooner or later.’ They were shocked, but I was already well established so there was no talk of getting rid of me,” he says.

Cohen says he never turned down an assignment, no matter how stressful or dangerous. His hard work and determination to not let MS get in the way of his dreams has taken him to assignments all over the world, including covering apartheid in South Africa, the Solidarity movement in Poland, and war in Beirut, Lebanon.

But while he eventually figured out how to handle his career, dating was a different struggle. Knowing when to tell the person you're dating about your medical condition isn't easy, Cohen admits. “I joke that I used to do it earlier to save the price of dessert in case they bolted,” he says.

While on a second date with his future wife, Today host and former View co-host Meredith Vieira, Cohen was surprised by her composure when he told her he had MS. “She's a pretty tough journalist and asked me a lot of pertinent questions and there were no answers to most of the questions,” he recalled during a presentation at the American Academy of Neurology annual meeting in April, 2007. “It was a leap of faith we were happy to take, but there was always the uncertainty.”

“She looked me in the eye and asked questions for which, of course, there were no answers,” he recalls in his memoir. “There were pauses and stares into the distance. ‘I don't care,’ she finally said.”

Vieira showed the same compassion during Cohen's battles with cancer. In October 1999 Cohen was treated for colon cancer, only to have it return a little less than a year later. Talking to his three children, now teenagers, about his medical troubles involved a balancing act, he says. “Kids know when they're being kept in the dark.”

He doesn't let his disease get in the way of spending time with his family. “I was very conscious as my kids were growing up of what I could not do with them. I have boys and I could not do a lot of athletic stuff with them. My daughter does that stuff now and I can't do that with her, either. But what I realized is that you compensate by giving them other things, spending time talking with them and sharing things with them…When my older kid was going through the whole college process I went and looked at all the schools with him. It was stressful because it was hard to move around and everything, but I was glad to do it.”

Today, Cohen is cancer free and busy at work as a writer. He eventually retired from television news, a decision he says was not based on his health but on his disappointment with the direction that news coverage was headed.

Every Monday through Friday Cohen takes the train from his home in the New York City suburbs to his Manhattan office, where he has penned two books: Blindsided, and Strong at the Broken Places, scheduled to be released in January. The new book profiles five families dealing with chronic illness: a woman with ALS, a man with non-Hodgkin's lymphoma, a young woman with Crohn's disease, a college freshman with muscular dystrophy, and a man with bipolar disease.

Despite his vision impairment, Cohen uses the subway to travel—an activity that can be daunting enough for any physically fit person. As he states in Blindsided, he relies on the help of a cane, his hearing, his sense of smell, and what's left of his vision to navigate.

“People can't believe I still take the subways. Family friends say, ‘Why do you do it?’ My answer is because I can, because it's me and I can do it and I'm going to do it until the day I can no longer do it. I think that a large degree of stubborn determination to keep going and do things the way you want to do them is a healthy thing. Anyone with common sense will know when they've crossed the line into being reckless, dangerous, and irresponsible.”

Though Cohen is yet to find an assistive reading device that he likes, that doesn't stop him from reading the daily paper, using e-mail, or setting strict deadlines to complete his writing projects. “I get my glasses and prism and just read—slowly and painfully.”

He admits that being disabled in a “culture that can be very anti-illness” is a constant challenge. Employers often perceive people with chronic illness as a risk, he says. “I had a professor in graduate school who was famous for saying ‘Don't tell me your troubles.’ I think that's how people feel.”

The same apathetic attitude can apply to the way the medical profession communicates with the chronically ill, he says. He urges people to be selective in choosing their physicians. “In initial meetings with doctors I think we should be open about what we're looking for and how much emotional support we need and feel comfortable with. If you don't like your car, or your TV, or microwave, you get another one. Why wouldn't you do that with a doctor?”

In the end, Cohen proves that a healthy sense of denial, no matter what the prognosis, is one way to face adversity. (Sorry, Sigmund).

“I guess my attitude is that I've lived with a lot between the MS and the cancer,” he says. “I look back on my life—which is hardly over—and I think, I've got a great life. I've got a great family, I've had the opportunity to cover news all over the world, I have a new book, and I think, life's not so bad. I think what we all have to do is look beyond our illnesses and see what else we can build in our lives.”

MULTIPLE SCLEROSIS is a chronic disease that causes the immune system to attack healthy tissue, experts think. Symptoms result when an attack affects myelin, the protective insulation surrounding nerve fibers of the brain and spinal cord. People with MS can experience pain, difficulty walking, and vision loss.

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From Blindsided

Timidity and self-consciousness have been slowly overcome, replaced by today's casual nonchalance at walking into undesirable situations, not to mention a wall, and spending a lot of time lost. Just learning to ask for help or directions took work, but now the ability to do either has become an invaluable coping skill. The best is saved for underground.

Slowly came the skill to survive the New York City subway system, a proving ground for the visually impaired.

My regular forays into the subways become descents into an unsettling fog that envelops the vague forms of humanity in motion. The rumble and vibrations of thundering trains on the move add their punctuation. I struggle to stay on my feet and see where I am going. I often cannot read the numbers or letters on trains as they enter the station.

I use my other senses as a hidden guidance system. My ears tell me when a train is approaching, when there is an argument just up the platform. My nose says where to sit. Some subway riders also happen to live down there, sleeping on trains or behind wastebaskets, panhandling and parading their fumes, not the sweetest companions for an outing on the number 1 train.

The primary rule of the subway is: Do not make eye contact with anyone. It holds true even for people with impaired sight who have to stare intently to take in and make sense of the images of life. Ogling a woman can be mistaken for engagement or worse.

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Aboveground, the circus continues. Walking in the city is running the gauntlet. I watch for traffic because I move slowly in the street. Yet I may be the only legally blind jaywalker in the city. My radar is technically perfect, with ears that guide, helping me gauge speed by the sound of the engine. This is when eye contact counts. The hard stare at drivers is unflinching. I dare them to run me over. They always back down. So far.

I get there. I just leave a little early. Traveling my world is a negotiation without end, an ongoing bargain with myself. To keep my cool is to honor the agreement. Living with disability requires quiet resolve.

©2007 American Academy of Neurology

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