'Healthy Self-Delusion' Joins Regimen to Fight M.S.

[Guest guest]

'Healthy Self-Delusion' Joins Regimen to Fight M.S.

New York Times

By MARY DUENWALD

Published: February 3, 2004

With every step, M. Cohen hitches to the left, bracing himself

against his wooden cane. It is a rather long cane, as it has to support

a man who is 6 feet 2. His uneven gait, caused by a feeble right leg, is

only his most obvious symptom of multiple sclerosis.

There are many others, accumulated during 30 years of living with the

disease. Mr. Cohen's right arm hangs motionless. Like his leg, it is not

fully paralyzed, but it has lost enough feeling to be useless, as he

puts it. Both limbs have lost their ability to function as the

insulating layer of myelin that surrounds certain nerves in his brain

and spinal column has disintegrated.

" Picture an old-fashioned switchboard, " Mr. Cohen said. " Insulation

peels off the wires, and it short-circuits the system. "

By the same process, M.S. has so impaired his vision that he is legally

blind. It has weakened his voice so that it sounds uneven in tone and

pitch, like a very old man's. It has made sleeping difficult, leaving

him constantly exhausted. And it has given rise to chronic pain in his

right knee.

" Because my thigh is atrophied, I can't do what exercises need to be

done to fix the knee, " Mr. Cohen said. " And I have disk problems, again,

related to the way I've moved for years. One thing affects another,

affects another. "

M.S. has not been his only problem. Two bouts of colon cancer in the

past five years have left his intestines in disarray. And though he is

currently cancer-free, he still lives with constant discomfort. " Once

they mess with your intestines, it's never the same, " he said.

For all these ailments, he looks surprisingly ordinary: a clean-shaven

55-year-old man with soft brown hair and blue eyes.

Mr. Cohen spent his early adult years as a television producer, working,

among other places, at the " CBS Evening News " with Walter Cronkite and

Dan Rather.

Now, his days are taken up with the effort to cope with a life that is

largely defined by illness. His many maladies are the basis of his new

book, " Blindsided: Lifting a Life Above Illness " (Harper). It is,

as the second subtitle says, " A Reluctant Memoir. " It is also an

extended treatise on the psychology of coping.

As he has done to some extent before, in columns written for Science

Times, Mr. Cohen imparts in the book his insights into the mental

challenge of chronic illness, insights that he believes may help others

in similar predicaments.

" I regularly get calls from people who've been diagnosed with M.S., " he

said last month, as he sat in an Upper West Side restaurant. " I always

tell them that the one thing that's in your control here is what's going

on in your head. Don't panic. You've just signed up for a lifetime.

First, learn about the illness. Second, start to think about who you

are. "

The basic challenge, Mr. Cohen said, has been to find ways to live life

as he wants to. The first strategy he found was denial.

" To me, denial is not seeing the possible consequences of illness as

inevitability, " he said. " Denial bought me time to get my bearings, to

learn about the illness. "

Yes, from the time of his diagnosis, in 1973, he had to admit to himself

that he had M.S. That fact was made evident by his occasional stumbles

as well as the sudden loss of sight in his right eye. But he did not

plan his life around it.

Instead, after finishing graduate school at Columbia University, he took

a producing job at CBS News and for the next few years, traveled to the

world's war zones, working in the thick of battles in Beirut and El

Salvador. The symptoms of M.S. came on over the years, so he was able to

manage the work. Still, his impaired vision intensified its dangers.

It was, he writes, a form of " healthy self-delusion. "

" I believe in that, " he said. " That's how you keep going. When you have

this kind of problem, you've got to push and push and push. "

In the early years, Mr. Cohen also found that silence helped. When he

applied at CBS, he kept his illness to himself. He even faked his way

through the required company physical. In later years, one of his bosses

admitted that Mr. Cohen would not have been hired had he disclosed his

disease.

In his personal life, he said, " I went from obsessive secrecy - I mean I

told no one - to being less secretive about it. But it was still nothing

I really talked about. "

Another strategy Mr. Cohen has used to advantage, though sometimes

regretfully, is anger. He calls it " the polar opposite of denial, " when

frustration overflows, he said.

For example, there was the day when no one was home to help him unbutton

a shirt he wanted to take off. With no assistance, buttoning or

unbuttoning a dress shirt can take him 15 to 20 minutes. Cuffs and the

top button are impossible for him to manage alone. " I just tore it from

my back, " he said. With a smile that seemed wistful, he added, " It was a

nice shirt. "

" It was really stupid, " he added. " I don't do that that much. But

occasionally, for better or for worse, I need to just let the steam

off. "

At times, his anger has been directed at doctors: a succession of

neurologists who have been unable to fully explain or provide treatment

for his symptoms.

A few times a week, Mr. Cohen injects himself with medicines intended to

retard the progression of M.S. But these do nothing to relieve the

symptoms he already has.

" You know what? " he said. " I will die never knowing whether these shots

did anything for me. "

In the weeks and months after his second surgery for colon cancer, Mr.

Cohen fell into an intense and persistent state of anger that took a

toll on his family. " My desperation filled the house, " he writes.

Mr. Cohen is married to Meredith Vieira, a host of the ABC program " The

View, " and they have three children, ages 11, 12 and 15.

But along with the excruciating postsurgical pain, the worst of that

anger has subsided.

Denial, too, is not as strong as it once was, Mr. Cohen said. About

seven years ago, long after he had left CBS, when he had just gone to

work at the Fox cable channel FX, Mr. Cohen decided that he could no

longer work as a producer. He quit his job. And he bought his cane.

" Nobody told me to get the cane, " he said. " I didn't ask the doctor. The

time was right and I was literally walking by a cane store. I needed the

help and I was ready. "

Coping has meant zigzagging between wisdom and shame. Mr. Cohen writes

of the regret he feels at not being able to drive, so that all the

errands and transportation of children falls to his wife. He describes

how difficult it is to face the fact that he, a man who used to run 10

miles a day, cannot take weekend hikes with his family.

" I am, by any objective standard, less of a person than I used to be, "

he said.

On the other hand, Mr. Cohen finds that his ordeal has made him a wiser,

better person. " I do think that with all of the physical challenges and

all of the emotional pain has come a sensitivity about people and my own

personal sense of what's important in life, " he said. " I'm involved with

my children on a different level. I just think - I want to think - that

we learn, that we become deeper people for the pain we endure. "

If his self-recrimination and his pride seem contradictory, that does

not surprise him. " I really think that keeping your emotional

equilibrium is like standing on a rolling ship, " he said. " I mean,

you're going to slip. You're going to grab onto things. You're going to

feel yourself falling. And it's a daily - not just daily, but constant -

challenge. "

He has chosen to cope on his own, without the help of a psychologist or

other counselor.

The coping is not over, to say the least.

As the son and grandson of people who also had M.S. (his grandmother and

father), Mr. Cohen worries that one of his children may one day also be

afflicted. His children have asked him about their risk, but he cannot

assess it for them.

Though doctors have come to recognize that some people have a genetic

predisposition to M.S., they have not identified a gene connected to the

disease. Various doctors have told Mr. Cohen that his children's chances

of getting M.S. are about 13 to 15 percent. But one expert in San

Francisco said that because of his pedigree, his children's chances are

probably higher.

" It's very much an open question, " Mr. Cohen said. " Could my kids get

it? Of course they could get it. Do I think they have a far greater risk

than I have been told? Yeah, I do. "

He said he hoped that others living with chronic illness, numbering in

excess of 90 million in the United States alone, would find a measure of

comfort in reading his story.

" I know that I closed myself off when I was very sick with cancer, " he

said. " And I have a feeling that people who are ill tend to isolate

themselves. It's almost instinctive. The more people who deal with

illness can speak to each other, share their experiences, and share

their pain even, it's very useful. We can all feel better knowing we're

not in it alone.

" I'm not sure I'm high-minded enough to have written this for that

reason, but it would be nice if it were true. "

http://www.nytimes.com/2004/02/03/health/03COHE.html

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org