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Richard Cohen's network television news career spanned 20 years, during which he covered wars and politics for ABC News, CBS News, and cnn. He received numerous awards in journalism, including three Emmys, a George Foster Peabody, and a Cable Ace Award. Richard was diagnosed with Ms. When he was 25 years old and has been living with Ms. For four decades. He's also a colon cancer survivor. He's the author of two New York Times bestsellers. Blindsided is a revealing memoir detailing his struggles with Ms. And cancer. Strong at the Broken Places follows the lives of five individuals living with serious chronic illnesses. Richard has a new book, Chasing Hope, in which Richard writes about his experience with stem cell therapy and insights into the concept of hope and its relationship with chronic illness. My name is Jan Weaver, Operations Manager for the Accelerated Cure Project. I had the pleasure of interviewing Richard about his journey with Ms. And his new book. What follows is a recording of the conversation we had on Monday, March 19, 2018. Richard, thank you for your time today. You've lived with Ms. Since you were 25 years old. For some, Ms. Has periods of remission in which symptoms improve or even disappear. However, in your case, Ms. Symptoms have slowly and permanently progressed. How do you best cope living with progressive ms?
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Well, there's an inevitability to the journey because as you say, it's a one way trip. You know, you don't get better and then just slowly get worse. So I think you've just got to come to grips with, deal with. The fact that things are going to deteriorate doesn't mean that it's going to happen at any particular rate of speed. It doesn't mean that tomorrow is the end of the world. It's just a fact of life you've got to deal with.
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A
Right? Right. In your book you state that chronic illness is a family affair. Can you tell me what you mean by that?
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B
Well, yeah, I mean, when you are, let's say in a hospital bed, you're not really there alone. Your family's with you, you know, your spouse, your partner, whatever, your children. Everybody in the family is affected by illness. Everybody in the family somehow shares in it. And because it can be so limiting for the sick person, very often the rest of the family tries to help as best they can and, and everybody sort of gets involved. You know, it's an odd thing because even with a loving family surrounding you, even with an empathic infrastructure under your roof, there's something very solitary about illness. I'm not contradicting myself here. It is a family affair, but there's Something very lonely about being sick. You know, it is not anybody else who's going to suffer with it. Only you feel the physical effects, only you feel the fatigue or the pain for that matter. And in the end, in the end, you know, we really are alone with this. But it's wonderful. Having said that, it's still wonderful to have a family around you just because they become part of the battle, you know, and, and they, I've noticed in my life as my kids have grown up and they're all in their late 20s now, that they watch over me, they watch out for me. You know, they, they're there with me. You know, if there's rough footing, you know, they sort of take my arm without my saying anything to them. They're just very tuned into it. And I always say, you know, on one hand you don't wish it on your children, and on the other hand, I really do believe that kids become better persons for growing up in a family with illness. They learn very early that life is not fair. They understand on a very basic level that it can be painful. They're fully aware that they're in a position to help. And I think it just becomes second nature too them. And I've seen it and, you know, I've seen decisions they've made in their own lives that I think had everything to do with growing up in a house with sickness. You know, for example, our oldest son, before he went to business school, had a coding project and he mapped out all of the handicapped accessible entrances to the New York subway system, which nobody had ever done. And he didn't do that by accident.
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No, he was sensitive to that.
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B
Yeah, he did that because it was very much on his mind. And so it's not entirely just the downsides you've got to deal with. I think there's an upside too.
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A
Now, when you and your wife were guests on Deborah Norville Tonight, the title of the segment was Living a life above Illness. How do you do that?
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B
Well, the title of my first book, Blindsided the subtitle was Lifting A Life Above Illness. And what I think that means is that you've got to learn to rise above the difficulties, the physical impediments that lay before you and find a way in, a way to soar, you know, to lift yourself up to be bigger than the. Bigger than your disease.
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Right?
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To do something with your life, to live gracefully, to be a good person. And those may all happen more because of the illness than anything else.
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A
You've had a renowned network television news career and your wife, Meredith Vieira, is an American television personality and a journalist. Have you found your positions of prominence to be difficult in your journey with ms?
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B
You know, not really. Not really. We're very ordinary people. You know, I mean, I. That may sound funny, but, I mean, yes, Matt is a celebrity for sure, but we live in a town along the Hudson river, and we're just like everybody else in the town. It's, you know, it's a small village, and nobody is treated like a celebrity. We know people, and we're just regular people. We're on the streets of New York. You know, people come up to us and say things or ask questions or somehow react, and by and large, they understand boundaries and don't really bother us, and it's really not a big thing usually.
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A
Now, being a parent with ms, how do you broach the subject of Ms. With your children?
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B
Well, it started early because they saw me take a fall, and they were old enough. Our oldest, Ben, was old enough to start asking questions. And we had always. We had always said that we were going to be open about it, but you have to wait until the time is right to do it. And. And this was thrust on us because the question started and we started giving them answers, including putting a name on my problems. And, you know, if you want your kids to be, you know, happy, if you want your kids to be secure and feeling like they live a normal life, be open with them. You know, kids are the smartest ones in the house.
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A
Very true.
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B
You know, I mean, they. They have eyes and ears, and they're always working. They're always working overtime, and they hear everything and they see everything and they want to know everything. And I think. I think you're really doing a disservice to them if you keep secrets. And we've been very open about it. And when I had cancer, we sat them down and told them what was going on very calmly. And kids take their cues from us, you know, I mean, you know, we. You know, if we were. If we were hysterical, you know, climbing the walls, they would be hysterical climbing the walls, too. But we were just very understated, as reassuring as we could be without being dishonest. And once you create a culture of openness in the house, then they're not afraid to ask questions, you know, and. And they don't even have to be prompted by any bad events. They just may be interested in knowing something. And our kids, and I'm sure this is true in plenty of other families, too, feel free to answer, to ask Any question, questions they have. And so it becomes, it all becomes very casual and second nature, you know, and it's not hard to be honest with them because I know they having grown up with it, they can handle
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A
it no matter what their age. People in general would like their kids to just be kids and not have to assume caregiving responsibilities. What advice on ways to prevent this from happening would you give other people with Ms. That have children?
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B
Well, of course everybody's circumstances are different, you know, and you know, people with one child versus two or three children are going to have different experiences. You know, certainly we try not to lean on the kids in any way that I think is going to the make their lives difficult. You know, the fact of the matter is there are no caregivers in this family. Meredith would be the first to tell you that their families or couples are automatically caregivers. I mean, we're emotional caregivers. We get involved and you said there's lines and we look out for each other and that's what a caregiver does. You know, I, I'm not at a point where I need people to, to feed me or get me to a bathroom or anything like that. I'm pretty self sufficient. So I don't think there's been any kind of a burden on anybody in this house.
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A
Now, how do you deal with thoughts or fears about the genetic component of ms? I know that your father had Ms. And was it his mother also had ms?
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B
His mother had too?
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Yeah, yeah. How do you know?
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B
You know, there's nothing, look, there's nothing you can do about it if you've made a decision to have kids. And I don't think we knew the genetic realities before we, you know, before we got married. I mean, it is what it is.
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Right?
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But having said that, you know, I've done quite a bit of research. I've been on a couple of boards at Harvard Medical School and know a lot of the people on the front lines of neurology and one person told me that if never there's in the literature, there's no case of a disease in four generations of a family.
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Right.
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B
You know, if my kids had it, it would be the fourth because I'm the third and you know, they're all older than I was when I was diagnosed. So. Do you ever put it totally out of your, your mind? No, but it just, it's there but just doesn't seem to get much way. And by the way, there is so much work being done on research on the illness and different things to help you deal with it that, you know, every year that goes by is a better time. If you've got to be diagnosed with a disease like ms, sure. You know, better now than when I was diagnosed. When I was diagnosed, it was nothing.
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A
Yeah. In your book you talk about being tired of needing the assistance of other people. How do you preserve your sense of self once you allow yourself to ask for help?
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B
Well, you just gotta do it.
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A
Yeah.
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B
I mean, it's. I say that as if I do it with ease because I don't do it with these. And I didn't do it very gracefully for a whole lot of years. But. But it's. It's crazy to struggle with something, you know, tying your shoes, buttoning buttons, stuff like that, when there are people around who can help you turn. I mean, if I put on a shirt with buttons, it might take me a half hour to put the shirt.
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Mm.
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And if there's somebody there, the shirt can be buttoned in about, you know, 30 seconds.
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Right.
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So it just, it seems crazy to push people away and insist on doing it yourselves. I think we all feel self conscious asking for help, but it's crazy. I mean, we announced it situation. And I don't think anybody around us in our lives thinks less of us for asking.
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A
And they're probably more than happy to lend a hand.
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B
Absolutely. And they sure don't want to hear me complain.
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A
Many people with Ms. Find that they're labeled by the general public if they use an assistive device for getting around, whether it's a cane, crutches or a wheelchair. Have you ever found this to be the case?
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B
Yeah, I have. I mean, I use whale chip wheelchairs at airports or very large places. And people don't want to deal with you when you're. People don't want. People don't see us. They see the wheelchair. They don't see the person in the wheelchair. I mean, even when I've been on a cane, you know, I. We went up to. Went into a house of worship to see something and I walked in first while Meredith was parking the car. And this woman, an usher, stood maybe 10ft from us, from me, and looked at me but said nothing and didn't walk over. Sure. And so I just stood there very quietly and then wouldn't miss Meredith came in. She walked over to Meredith and said, ask where does he want to sit?
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A
So she knew you were there, but she didn't acknowledge you?
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B
No. But, you know, and I said, I just learned to talk, you know, that kind of Thing has happened more than once, but I don't think when I'm, you know, I walk with the cane and with a walker sometimes and I don't feel self conscious anymore. Maybe I used to, I don't know. But it's just people. People don't pay any attention to me and I don't seek any kind of attention. Sure, it all seems pretty easy.
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A
That's great. Do you have feelings of bitterness or anger towards healthy people? I know you've referred to them as the chronically healthy in your, in your writings. Do you have?
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B
I do that, yeah. When I'm referring to people who, who I think just don't want to see us or refuse to see us or make remarks to us, which doesn't happen that often.
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A
Yeah, that's good.
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B
But no, I'm not angry on that bidder. I mean, I. Look, there are so many diseases out there and if you start to go, if you go over the range of diseases that you could have, I'll take the Ms. Anytime. I mean, seriously, there are just horrible, horrible diseases that you can have. So I just don't feel sorry for myself, you know. You know, when I've been asked, do I ever, do I ever ask why me? You know, my answer is, why not me? You know, I mean, people get diseases and I got one and some people don't get one. And it is what it is and
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A
deal with it Right now, turning our attention to your book Chasing Hope, I thoroughly enjoyed it. I enjoyed its message. I think it offers wonderful insights, inspiration for those with Ms. And for those who don't have Ms. Now, the epigraph in your book by Paul Tillich is Hope is easy for the foolish but hard for the wise. Everybody can lose himself into foolish hope, but genuine hope is something rare and great. Why did you choose that particular quote?
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B
Oh, I think just because hope as a word is thrown around and it means a lot of things to a lot of people. I mean, for example, I hope I win the New York lottery this week. Now, it probably isn't going to happen, but maybe, but I mean, that's the kind of thing. I mean, it just. I think if you're going to hope, you've got to be smart about it. You've got to be realistic about it and not waste your time hoping for things that will never come to be.
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A
You did a lot of research, interviewed quite a few people investigating the source of hope for many different religions, even in the field of sports. And I think you learned that the source of hope is an Individual, Individual thing. What was your favorite interview about hope or the favorite view about hope? What reached you?
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B
Well, I think, I think, I think that my favorites were people who talk about hope in terms of their families. You know, maybe it's. That is just easy for me to relate to.
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Right.
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B
But, but there were people who are immensely. For example, Tom Brokaw, who's immensely successful, has been and is really fighting cancer. His, his hopes are all to be. To spend time with his family.
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A
Right.
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You know, and, and I think for me, that's what it's all about too.
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A
Sure. Yeah.
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B
So I, I related very completely.
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A
Completely to that one. Yeah. What is your source of hope?
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B
Oh, I think hope is something that you, you have or you don't have. You know, I'm, I don't much believe that it has to be tied to anything in particular. I'm not a believer myself. And so the idea that you need faith to have hope doesn't work for me. I think faith is organic. I think faith, I mean, hope is organic. I'm sorry.
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Yeah.
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Hope just sort of feeds on itself and, you know, it's a way of approaching life. You know, it just, you know, it doesn't have to be in any particular context.
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Right.
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If you're sick and hopeful, you're probably also just generally an optimistic person and hopefully about all kinds of things in your life.
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A
Sure. So in some senses, hope really is self fulfilling then.
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B
I think so, yeah. I think it's a whole mindset
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A
now. It seems like you and Meredith have a great sense of humor, which I think has probably carried you through a lot. Does this play a role in your coping with ms? Sure.
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B
With Ms. Or anything else.
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A
Yeah.
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B
When I had cancer, Meredith came into the hospital one day and said, you know, I found the cutest black dress and I bought it just in case.
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I love her.
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B
And we have, we've spent time laughing hysterically about that. That's awesome. So if Meredith hurts her leg or something, I always tell her, time to get the dress out.
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A
That's great. Each of your children spoke publicly about the impact of Ms. On their lives for the first time at a sold out luncheon at the Vatican. Now you must have been very. Yeah. You must have been very proud of them, watching them speak.
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B
I mean, I, we, you know, we had talked privately about it and I had asked them some questions for articles I did in the New York Times and the Science Times or for my first book, Blindsided. But this is the first time we ever sat in a room at a big lunch Table. I mean, this was. This was not only a well attended luncheon, but it was on closed circuit TV all over the Vatican.
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A
Oh, my goodness.
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B
Oh. I mean, that sort of. The venue was sort of intimidating to begin with. And I thought they were fabulous. They didn't blink. And I. They talked very openly about their experience growing up with the illness, and I was just immensely proud of them for their composure and their willingness to share.
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A
I can only imagine. Now, you weren't officially in the clinical trial, but Dr. Siddiq treated you with stem cell infusions regardless of.
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B
Yeah, I could not be because I had cancer.
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A
I see, I see.
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B
And they're very afraid of comorbidity. And that means that, you know, if I were in a trial and died suddenly, even if it had nothing at all to do with the reason I was in the trial, everything would stop and it would take time and money to get back on track. So nobody wants to take a chance like that.
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A
I understand. Yeah.
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B
So he just very. Was terrific and just treated. Treated me next to the trial, I think that's what it's called. But I. I found out that that's very commonly done and so. So I was able to take part in that way.
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A
That's great. Did you have any hesitation at all about proceeding with the infusions?
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B
I had no hesitation at all. I mean, first of all, if you have an illness like Ms. Or many, many other illnesses, and if you want to deal with it, if you want to fight it, you can't be risk averse. I mean, you can't be totally risk averse. You know, you have to be sensible.
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A
Right.
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B
But you have to be willing to take chances. And I knew what I was up against here. I also knew that they were using what's called autonomous cells, meaning my own cells. And when you're using your own cells, it's. It absolutely minimizes the risk of rejection or any other kind of reaction. So I thought the risk was sensible, manageable, and I didn't give it a second thought.
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A
Okay, that's great. Now will you have additional infusions or are they finished?
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B
Well, they're in a phase three now. I mean, I'm sorry, Phase two now. And we're talking. We haven't really figured it out.
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A
Sure, sure. Did you see any benefit from them?
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B
Not as much as other people. Some people got up from wheelchairs. I think the fact that I had a lot of other things going on physically, including a blood clot in my lungs, that. That had an effect on my response to the Stem cell.
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A
Did they ever determine that your blood clot was a consequence of the infusion or was it independent?
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B
No, it had nothing whatsoever to do with that.
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A
Yeah. Okay. The potential promise of benefit from stem cell infusions is very tempting. Would you recommend them for other people with progressive ms?
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B
Well, I'm not in a position to recommend anything.
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A
Sure.
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B
But having said that, I think that cell therapy, not just stem cells, but all kinds of cell therapies, are the wave of the future in medicine. I think they are the future of medicine. And I think that we are very close to the starting line. You know, I mean, it's not brand new, but it's pretty close to brand new. And I think over a period of time, you know, even in our lifetimes, we're going to see tremendous strides that I, neither I, nor you nor anybody
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A
else can predict right now. You've seemed in your book somewhat jaded about neurologists and conventional Ms. Treatments. Do you feel differently about Dr. Siddiq and will he continue to be your Ms. Care provider?
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B
Yeah. No. I think Dr. Siddiq is very unusual and he's very open to new ideas. I think neurology very often sort of cooks from the same old, tired old cookbook. And I think Siddiq tries different things. He wants to experiment and he's just. Well, actually, he laughs a lot, which is a lot of why that's great.
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A
It seems that you have a close knit family. It's wonderful how you and Meredith sat down with them to talk through the difficult times your family has experienced. Does hearing that they are doing okay help you to have peace and therefore hope?
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B
Yes. Yeah, absolutely.
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A
Yeah.
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B
Absolutely.
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A
Yeah.
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B
And I do have hope for the next generation. I do. And I'll be fine. Whatever happens, happens. As long as they're okay, I'm okay now.
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A
Chasing hope delivered a very strong and wonderful message at the end that no matter what the source, it's crucial not to lose hope. How do you keep your sense of hope alive?
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B
I don't think it's something you consciously do. I just think it's something burning inside of you. And sometimes the flames high and sometimes it's a low flame.
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A
Right, but.
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B
But generally it endures, is not extinguished. And, you know, I'm happy that I'm the keeper of my own flag.
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A
I'd like to mention your blog in the article as a way for readers to keep in touch with the author. Now, you call yourself the journeyman in your blog. Why do you call yourself that?
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B
Because I'm on a journey like, everybody, help. And the drawing, you know, at the top of the blog is someone with a cane walking toward the skyscrapers of New York. And that's sort of how I see myself, which is, you know, a member of a very big city and a large community, and at the same time, on a solitary journey.