Health and Hope: Living With Chronic Illness

WebMD Live Events Transcript

To live with an illness that has no horizon takes more than a physical toll; it challenges one's emotional strength, tests relationships, and can make any goal seem impossible to reach. Richard Cohen has learned this and more in his battles with chronic illness. We discussed his experience, chronicled in his book, Blindsided: Lifting a Life Above Illness, on March 31, 2004.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

MODERATOR:
Welcome to WebMD Live, Richard. What is your definition of coping?

COHEN:
The simple definition of coping is this: Whatever gets you through the night. Coping is a learned art; you won't find anything credible in any textbook; you can't find it on a matchbook cover. Coping is the mysterious process of taking a breath, putting life into perspective, understanding what's important, and cutting through the underbrush that I think frequently gets in the way of smart emotional responses to difficult situations, not just health situations, but personal dealings. That can be job problems; it can be marital problems; it can be difficult kids. Coping is coping, and I think we all find our way in the dark as we grow older.

MODERATOR:
I have been reading your book, which is remarkable in that you do not present a solution for coping with chronic illness; you simply present your story of coping. For those who haven't read your story, can you give a brief background of what you have been dealing with?

COHEN:
When I was 25 years old, I was an aspiring television producer at ABC News. Suddenly, with very little warning, I was diagnosed with multiple sclerosis. That was 30 years ago. In the late 1990s, as a result of routine age-driven screening, I learned I had colon cancer. That cancer came back in less than a year. So I've had my share of high winds and pounding surf and turbulent waters.

In the course of these 30-something years, I've learned a little about coping. I'm no expert, I write no prescriptions, and I'm no smarter than the next guy. I've just paid a lot of attention to my responses to illness, my professional and family situations, and I've come to learn that coping is a major part of anyone's life, and perhaps mine in particular.

"I think that people are far stronger than they think they are. I hear people say about various contexts or issues they see in front of them, 'Oh, I could never cope with that. I could never deal with that.' I think they're wrong."

MODERATOR:
Your father and your grandmother both lived with MS. What did you learn about living with chronic illness from them?

COHEN:
My grandmother probably had MS, though it was never diagnosed. My father, who's now 86 years old and a retired physician, has MS and has lived with it for 60 years. I've watched two generations before me deal with MS with spectacular strength and a determination to live their lives fully as best they can. I've learned from that.

My grandmother never complained once in all the years I knew her. The very clear statement from my father about his illness was very simple: Don't be a victim; don't foist your problems on other people; keep going. My father really taught me a great deal about coping and I never knew it. I thought I was oblivious to issues in his life, such as how he handled MS. But when the problem arrived on my doorstep, it occurred to me that I was lucky enough to have a reservoir of strength, because I had learned from him.

The lessons of learning to live with chronic illness come slowly, and they're not the big issues that one would think confronts somebody in that position. Really, the meaningful lessons come from all the smaller issues. Sometimes they're unspoken; sometimes they're simply observed and sort of taken in.

I think that people are far stronger than they think they are. I hear people say about various contexts or issues they see in front of them, "Oh, I could never cope with that. I could never deal with that." I think they're wrong. I think until a person's tested, until a person comes up against a serious problem of any kind, he or she doesn't really know what the response will be. I really do believe people possess more strength than they give themselves credit for. I hope they're never tested. I think if they are, they will surprise themselves.

MEMBER QUESTION:
In your chapter called, "The Kids and Me," you talk about anger being necessary but hard to deal with. Can you talk about blowing off steam as a necessary evil?

COHEN:
There's a fine line there, and I don't think I saw that line until well after I crossed it. The line separates constructive anger. It keeps apart the anger that I think does allow any individual a relief. There's tremendous pressure that builds up from the anxiety and the discomfort of being sick. The danger, however, I came to believe, grew from crossing the line into a territory where anger became destructive. Unchecked anger, I found in my own life, imposed a terrible burden on my family.

One of the strongest lessons I learned about chronic illness is that it's a family affair. We did not lie alone in our hospital beds. Our families are there whether we see them or not. Whenever I know I am suffering, my wife and children suffer with me. My anger, as I wrote about in the book, caused them to suffer even more.

It took my wife telling me that I was becoming a monster; it took her sitting me down and saying "Don't do this to your children" to shake me awake. When I finally realized what I was doing to the people in my house, arguably the people I love the most on this planet, I was stunned. It was as if I was learning what somebody else had done. I found that I was blind to my own anger. It took too long to realize, but at that moment the healing could begin.

MEMBER QUESTION:
Can you talk about how living with illness has affected your role in the family? Has it affected your role as a co-parent or does it make your wife more of the leader? Or is your illness the leader?

COHEN:
The multiple sclerosis, over the years, has had a profound effect on family dynamics. I was once strong. I ran 10 miles a day. And though my sight has been compromised for decades, I was a pretty fit parent in terms of being able to assume my share of the day-to-day responsibilities of parenting.

But in recent years, perhaps the last 10, my vision has grown worse. It means I need help seeing things, finding things, and reading things. My hands don't work; I need help buttoning a shirt, tying a tie, and there are life's little tasks that anybody with a progressive illness affecting limbs finds terribly difficult. All of that changes the burden of the people in the family. The cancer came and went. It certainly had its own impact and lingering effects, but really it's the MS that becomes the gift that keeps on giving. Everybody in the family ends up having to pick up the slack.

The downside of that is clear; everyone has to do more to compensate for what I cannot do. But I truly believe there is an upside, which is that my children are growing up seeing human frailty and physical imperfection close up. I think my kids have a keener sensitivity toward the needs of other people, and I want to believe that we, as a family, are kinder people because we have a full sense of how tough life can be. I think that's a great message to give to kids as you send them out into the world.

MEMBER QUESTION:
How do your children deal with your illness? You can't do things that many dads can do. Do they understand or resent the situation? Or is it their "normal" and so they accept it?

COHEN:
I think my kids have different expectations of their father than their friends do. I used to think that it was very important to throw a ball with the kids, shoot baskets, go running -- do physical exercise together. Somehow in my head it took on tremendous importance. When I could no longer do those things I found it very difficult. But over the years I have come to believe that children care less about throwing a ball to a parent than about talking to that same parent about being able to relate to a parent, and having a parent relate to them.

I think it means a lot to my kids that I'm there for school plays. I'm there for soccer games. Even though I'm legally blind and can't fully see what's going on, on the field, they can see me better than I can see them, and I'm there rooting for them. I think that's what matters. In the end, I think if a kid feels the love and support of a parent, a physical problem is of little importance.

"I think my kids have a keener sensitivity toward the needs of other people, and I want to believe that we, as a family, are kinder people because we have a full sense of how tough life can be. I think that's a great message to give to kids as you send them out into the world."

MEMBER QUESTION:
Are your children concerned about getting an MS diagnosis one day, given that their father, grandfather, and great-grandmother had it?

COHEN:
Sure, sure. They see their grandfather, who's on a walker; they see their father, who uses a cane and can't see very well; they know their grandmother was sick. They can't help but wonder about their futures. People wonder whether I should have put this in my book or not, but the fact is these issues were on the table well before the book came along. When my oldest asked me if it was going to happen to him I said, I don't know. No one knows.

It's very hard for kids, unless you believe in lying to your children, which I don't. There can be no assurances. But I think they have a pretty good perspective. We've told them the experts are telling us that their chances of getting MS are not appreciably greater than those of anyone in the general population -- that being 3% to 5%. So they live with it.

But I don't think they see my life as a tragedy, because I don't see my life as a tragedy. I think they take their cues from me. I do think they're going to face whatever comes their way.

MEMBER QUESTION:
As a journalist you were all over the globe covering hard news. How did your colleagues react to your illness? How did you deal with the change in your ability to perform those work tasks?

COHEN:
Most of my colleagues were not aware of my problem. I was very secretive about it for years, because if I had told people indiscreetly, I believe I would never have gotten the jobs I did get. When I joined the CBS Evening News with Walter Cronkite in the late 1970s as a producer, which was a coveted position, I have to admit I lied about my health and faked my way through a company physical. I didn't tell my bosses the truth for close to a year. Even after that I didn't say much to my colleagues, and there didn't seem to be a lot of questions.

I covered war in the Middle East, in Central America, and I covered the rise of the solidarity trade union movement in Poland, which spelled the beginning of the end of communism. It was in hostile territory. Television was a collaborative medium. I was with camera crews and correspondents whose eyesight compensated for my lack of eyesight. I never put anyone in danger, and somehow we muddled through it. A person can be good at what he does, even in a demanding profession, despite physical disability. I wish more people understood that.

MEMBER QUESTION:
I find that guilt plays a big role when my condition flares up. I feel like I'm dumping all my familial duties on my spouse. Any tips on getting rid of guilt?

COHEN:
I've had that same problem. When I have fallen in the street I apologize to everyone. I very often feel bad that dealing with me places an additional burden on my wife. I can only say that if we struggle to be better people than we were, if we can be nicer people than we might have been, it probably more than compensates for the burden we're imposing. I think we tend to see that burden as larger than it is, and probably too often we don't take for granted how much we're loved in our families. I think all we can do is go out of our way to be appreciative.

MEMBER QUESTION:
When my brother was dealing with AIDS the thing that he missed the most was driving a car. He said it was a guy thing. What about you?

COHEN:
I lost my ability to drive an automobile in the mid-1970s when I was in graduate school. I would guess that it took me about 15 years to stop thinking about what I had lost. To me, driving was independence. For me, getting behind the wheel of a car was an escape. Not only that, but when you cannot drive it places this awful dependency on other people. I treasure my independence to whatever extent it even exists. I found it psychologically very difficult not driving. I think the only reason I stopped ruminating about it was that my anxiety simply ran out of steam. It's one of those unhappy adjustments some of us have to make.

MEMBER QUESTION:
It sounds as though you had found a way to deal with living with MS. But then you were hit with colon cancer. How did you manage with that on top of everything else you were already dealing with?

COHEN:
I was one of these people who thought that having one serious illness indemnified me against getting any more. That, of course, is preposterous. I don't know how I got through the colon cancer, except that the first time around, at least, because it was caught so early, I thought there would be a surgical solution and the cancer would go away.

When the colon cancer returned in less than a year, it did so viciously. I endured close to seven hours of surgery, was stuck with a temporary ileostomy, and discovered that the trauma of the surgery kicked in a number of the MS problems. I was barely able to stand and walk. I had to sit to brush my teeth. I discovered that two illnesses can feed on each other, each making the other one worse, and it was certainly the low point, physically at least, of my life.

I cannot pretend that I coped with it well, but I think the question is not how well do you cope with it immediately, but what do you take from it; what do you learn about yourself; what do you decide is important to you in your life. Coping isn't going to work for anyone who demands immediate gratification. I think coping is the art of the possible, and it plays out over a period of time. I got through the cancer just fine, but it took a while. I still live with some of the complications, problems with my gut, but I manage. All in my life is in perspective. I'm fine.

"The challenge for me is simply to accept my own life and live it with grace. I want to feel a sense of purpose. I desperately want to feel that I contribute, and ultimately I do believe I'm at peace with myself."

MEMBER QUESTION:
Has faith or religion played any role in your life and how you cope?

COHEN:
Religion has played no role in my efforts to cope. Faith in me and in my family has. I believe in the extraordinary strength of the human spirit that does not need to be in the framework of organized religion. My dealings with my family taught me lessons about ethics, my perspective on how I want to treat other people was sharpened, and if all of us or most of us believe in something larger than ourselves, I do believe that we are all a family, that we owe each other, and that we can help each other get through very difficult times.

MEMBER QUESTION:
Have you ever been a part of a support group?

COHEN:
I never chose to be part of a support group, because I was so busy denying I had anything that would require support. I rightly or wrongly, smartly or stupidly, chose to go it on my own. I have, in recent years, spoken to support groups. I talk to anyone who calls me, especially those who are recently diagnosed with either MS or colon cancer, and I do reach out to other people.

For me, it's not that any individual has anything particularly useful to say to me; it's that I really do believe that we can support each other and that there is emotional support to be drawn from others who are struggling to cope with the same problems. So I think I made a mistake. I think I pushed people away, and now I do whatever I can to embrace them and draw them near.

MEMBER QUESTION:
I understand about the two illnesses feeding on each other. I have migraines, depression, and bad results from a procedure. It is so hard to think about anything else when you're in the midst of the pain and suffering. Knowing that you can cope helps and proves that you are strong, but the psychological issues are difficult to overcome. Are you saying that you really enjoy life now? Or is it to the best of your ability?

COHEN:
I really enjoy my life. I am aware every day of the limitations. I know what I can no longer do. But I think the task for anyone in life, not just the sick, is to adapt to new circumstances and find joy in whatever we do. I have a great family. I enjoy what I do for a living. I'm beginning another book and I'm writing columns for The New York Times . I feel that, to some extent, I make a contribution to the dialogue of disease, and I take satisfaction in that. I truly celebrate my life. I think it's a tragedy when an individual does not.

MEMBER QUESTION:
What kind of balance do you strive for between accepting yourself and your physical condition and hoping for a breakthrough that will offer a cure or a reversal of your problems?

COHEN:
I have no hope of a breakthrough that will reverse any problem that I have. I think the future is all about identifying what probably is more than one gene that explains a predisposition for getting MS. I have great hopes for future generations. I'm getting involved with a Harvard University consortium that is searching for the genetic link to MS. That's where my hope lies. The challenge for me is simply to accept my own life and live it with grace. I want to feel a sense of purpose. I desperately want to feel that I contribute, and ultimately I do believe I'm at peace with myself.

MODERATOR:
We are almost out of time, Richard. Do you have any final words for us?

COHEN:
Only that people who discover that they have serious illness, not just MS, but any chronic illness (and the CDC estimates there are 90 million Americans that suffer with chronic illness), need to learn how to cope, and an essential piece of coping I discovered in my own life was thinking through who I am, how I want to live, and how to get around my problems. There's no time for hysteria. I have little patience for high emotion, at least in my own life, and I do believe we can all live well with whatever comes down the pike at us. It truly is a matter of determination and the discipline to keep moving forward.

MODERATOR:
Thanks to Richard Cohen for sharing his experience with us today. For more information, please read his book, Blindsided: Lifting a Life Above illness .

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