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.
Your father and your grandmother both lived with MS. What did you learn about living with chronic illness from them?
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.
Are your children concerned about getting an MS diagnosis one day, given that their father, grandfather, and great-grandmother had it?
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?
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.
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?
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.
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?
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.
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?
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.
Has faith or religion played any role in your life and how you cope?
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.
Have you ever been a part of a support group?
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.
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?
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.
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?
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.
We are almost out of time, Richard. Do you have any final words for us?
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.
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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