Talking with Richard M. Cohen.

In his acclaimed memoir, Blindsided, Richard M. Cohen wrote about his long struggle with MS and two successfully treated bouts of colon cancer. A journalist and award-winning television producer, he is married to Meredith Vieira, who has just joined NBC's Today Show as co-anchor. Richard and Meredith have three teenage children.

Both Richard and I have had MS for more than thirty years, so we had much to discuss when we met last fall at the Southern California Chapter. The first part of the interview appeared in the February--March 2006 issue of InsideMS. Here is more from our conversation:

Is your forthcoming book--tentatively titled Strong at the Broken Places--a sequel to Blindsided?

It's an extension. It profiles five families dealing with serious chronic illness: a woman with ALS, a guy with non-Hodgkin's lymphoma, a young woman with Crohn's disease, a college freshman with muscular dystrophy, and a very interesting guy with bipolar illness.

These illnesses wreak havoc in all kinds of different ways, but there's enormous common ground in the emotional impact of illness and the need to rise above it, grab your life, and go where you want to go. I think all of us with chronic illness have something to say to each other.

How do "civilians" react to the subject of illness?

Very benignly, civilians don't want to be bothered. I can't say I blame them. I don't think it's malicious; I don't think it's evil. I just think that people who are healthy, God bless them, want to go on and live their lives.

But I also know we live in a culture that celebrates physical perfection. You see it all around you in Southern California. Without really thinking about it, most people push away the idea of illness. We don't want to see, we don't want to know. I believe that part of advocacy is making people realize that today's healthy person can be tomorrow's suffering person. It's well understood that as people get older they are more at risk for a chronic illness. We all have a stake in this. This is real. This is our lives and our future.

What is your reaction when people say MS isn't hereditary?

I'm the third generation in my family to have MS, a direct line, and you're telling me it's not hereditary? [Cohen's 87-year-old father lives with MS as did his paternal grandmother.] Virtually everybody who knows about this illness concedes that there's at least a genetic component. If they're not prepared to say that it's directly hereditary, they may be right, what do I know? But there's clearly a component.

How is your father doing?

He has lots of problems. He's been using a walker for a long time. I think he's going to need a wheelchair, but he goes on. He's an extraordinary role model. I talk to him all the time. We just shoot the breeze, we don't talk that much about MS.

Are your kids worried about getting MS?

I think it's in the back of all three kids' minds. How could it not be? I wrote in Blindsided that my oldest, Ben, looked at grandpa and then looked at me and asked if that was going to happen to him. He was about ten then.

How do they handle the uncertainty of the disease?

I think they keep it in perspective. I don't believe they live in fear. For one thing, they see that you can live a good life with MS.

I talked to them and to Meredith about my ideas for the book and for columns I planned for the New York Times. I wouldn't have gone ahead unless they agreed to it. But I also said that writing about this is all about helping other people. If we can help other people deal with their problems by talking about our own, isn't that a good thing to do? And they agreed.

Growing up with illness is not all negative. I'm not saying you wouldn't spare your kids if you could. But I think they learn important lessons early on.

Has "coming out" helped you?

After you've run into the wind long enough, when you start suddenly running with the wind at your back--well, to run with it instead of against it makes for a smoother journey. Part of that process is coming out of the closet. Many people talk about how long they tried to keep their MS a secret. There are many practical reasons for being quiet, discreet, and selective about who you share it with. But the longer it stays inside you, the longer you live your life without sharing. That's a strain. I kept it in for a long time. I found it [coming out] to be an enormous relief.

Do you still keep an office in the city? Wouldn't it be less fatiguing to work at home?

I do keep a studio in the city. I can't stay home. I got up and went to work for twenty-five, thirty years. I'm not going to suddenly start staying home. I may get a ride in, but I'm a creature of the subways. I take a train home and do a lot of walking. You have to. People ask me, why do you do it? And I say, because I can? You do it until you can't do it.

Does MS get easier over time?

For many years MS was the outside force that I was trying to keep out of my body. It was like beating off an assault. But personally, I needed to reach a point where I could accept it as part of me. It's not outside getting in, it's inside, and it never was outside. I came to realize if I didn't get used to it, if I didn't just sort of deal with it and stop fighting it, I was never going to know any peace. I can't live my life that way. So, yes, it finally became easier for me.

A family affair

Nobody knows the importance of getting news into the hands of the people who need it better than two news veterans like Meredith Vieira and Richard Cohen.

Vieira, who joined the Today Show this September, has long been involved in the fight against MS. Married to Richard Cohen for twenty years, she and Richard cope with MS together.

This summer, Vieira and Cohen donated their journalistic acumen to develop the Society's newest education piece--a DVD that accompanies the "Knowledge Is Power" kit that Society chapters give to people who have just been diagnosed. The DVD is now in the first installment of this series of fact-packed brochures about living well with MS. They are mailed out one at a time over six weeks.

Cohen provided input into script development and Vieira is the on-camera narrator. She shared her own spin on what it means to live with MS in her introduction:

"MS is a part of our family. All of us live with the illness as if it is our own. MS truly is a family affair. But everyone with MS is different. There is no one face of MS. It is as unique as each person it affects. Yes, MS will become a part of your world and your family's everyday life. But illness does not have to define who you are or how you live."

--Becca Kornfeld

Alison Dale's most recent contribution to InsideMS was her article "Isolation" in the August--September issue.