Richard M. Cohen is an Emmy award winning television producer and best-selling author.  His new book,  “Strong at the Broken Places,” tells the intimate stories of five people living with serious chronic illnesses. “Strong at the Broken Places” was born of the desire of many to share their stories in the hope that those who are ill and those who love them will see that they are not alone.  Richard and his wife Meredith Vieira, co-host of NBC’’s “Today’” show,  sat down with Editor-in-Chief Gary Barg to talk of their lives as parents, professional communicators, and partners in care.

Gary Barg:  Why do you think language is so very important to people living with chronic illness, and to their families? 

Richard Cohen:   Well, I think language is a powerful weapon.  People who have chronic illnesses have a constant battle with how people see them.  And I always say, when I’m talking to groups, that you’re really fighting on two fronts.  You’re not just fighting an illness, you’re fighting public attitudes and public perceptions of the person with the illness, and many times that can be worse than the illness. 

Meredith Vieira:   I wanted to pick up on what you were saying, Richard, because perception also applies to the people who are with someone who is chronically ill.  We have been fighting the perception that I am somehow the, woe is me, burdened selfless martyr.  Almost every article starts out referencing that in one way or another when that couldn’t be further from the truth. 

GB:  Yes, those articles make me cringe and the word that gets me usually is “victim.” 

RC:  It’s hard enough for people who are dealing with serious illness not to think of themselves as victims.  I think that you’re all but giving up when you see yourself as a victim, and then to have people relate to you that way is a psychological burden. It’s hard enough to keep yourself from thinking that, especially when everybody around you seems to want to think it. And I think people who don’t deal with illness imagine that we sit around here all evening wailing and beating our breasts and suffering or something.  I’m not suffering.  I have a great life.  I may be dealing with an illness, I may live with an illness, but I’m not suffering.

GB:  How do you keep your communicative partnership going?

RC: The larger issue in a relationship, and it’s so often unspoken, is how do two people continue over years to see each other as whole people when one is severely disabled?  How do people who were one thing physically when they got together, when they started going out, when they got married, evolve into something else over the years?  How do you see that person the way you used to see that person in terms of being strong, or being attractive or whatever your criteria are?  To me, that’s the biggest challenge to a couple. 

GB: What about reaching out and talking to others outside of your immediate family?

MV:  We’ve learned to rely on friends when we need friends.  I think many caregivers don’t have a fear of accepting help, but they are embarrassed.  They don’t want to put people out and are reluctant to ask for help. I think it’s important to ask for help when you need help; not to shy away from that.  People want to help; so when we’ve needed friends in times of any kind of crisis, we ask.  And I think that’s real important for caregivers not to feel that it’s all on you at any given time, because it’s not. 

GB:  I agree with you that one of the biggest challenges we have as family caregivers is to reach out and to ask. People want to help. 

MV: Exactly, people want to help.  I agree a hundred percent. 

GB: Richard, you’ve coined some really great phrases regarding an area that we find challenges our readers as well.  I’ll give you a few of them: communication copout, physician-assisted denial and keystone docs.  How do we better communicate with our doctors? 

RC: I think that doctors need to recalibrate how they operate.  And patients need to insist to their doctors that they be seen in a human way and treated in a human way. I wrote that too often we are seen as cases and not people.  We are collections of symptoms and not human beings. 

GB:  What advice can you give a caregiver or someone living with chronic illness about how to improve their communication with their doctors? 

RC:   I think that we shop for consumer items with more care than we shop for doctors and I don’t think any of us should hesitate to say to a physician, who is such an ongoing important part of our lives, that this isn’t working.  I think that people give doctors too much power.  I laugh when I hear the phrase “doctor’s orders” because I don’t think of anything a doctor says to me as an order; I think of it as a suggestion.  I think we have to take more responsibility for our own relationships with doctors.  I think people are very passive and I think the days of putting doctors on pedestals, hopefully, is coming to an end. 

GB:  So partner with your doctor, don’t fear them. 

MV:  I think that a caregiver has to ultimately be the advocate for the person with the illness and that means being their ears.  It wasn’t the MS, it was with colon cancer when at the end of the doctor’s appointment, it was clear that Richard had missed so much of it.  Because he was hearing it, but it wasn’t sinking in.  I think it’s fair enough for the caregiver to be there with the pencil and the paper and asking the questions because when you’re the one with the illness, it’s so overwhelming sometimes that you don’t hear what’s being said to you. 

GB:   Tell me about strongatthebrokenplaces.com. 

RC:  Well strongatthebrokenplaces.com is the website that we set up to go online when the book was published. On the last page of the book, we invited people to tell us their stories, including caregivers.   It would be great to have this national dialogue without sounding grandiose about it, with patients and caregivers talking to each other; because if there is anything both Meredith and I have learned in the wake of me doing this book, and I didn’t really know this before, but people who are sick draw a tremendous strength from each other.
 
MV:  People reveal their stories and they open up about what they’re going through. They help other people and it actually comes full circle in terms of caregiving. 

GB:   If there were only one piece of advice you could leave family caregivers with, what would that be? 

MV:   I believe in taking it one day at a time and seeing it as a family affair. As much as you give, you get back.  I think when you keep it in that perspective, it’s much healthier for everybody involved and it makes it, in some ways, light lifting because you’re not doing the lifting alone.  

RC:   I guess it would be for patients and caregivers to believe in themselves.  I think that people are stronger than they think they are.  I think that we all stand at intersections or sit in coffee shops and overhear other people talking and I wish I had a dollar for every time I’ve heard somebody say in any context, “Oh I couldn’t ever deal with that,” or “I couldn’t possibly cope with that,” and I always want to turn to them and say, “How do you know?  You’re probably much stronger than you know.  How do you know you wouldn’t rise to the occasion?” 

I think that people sell themselves short. People have a reservoir of strength and resilience that is invisible to them.  It’s something that they cannot see, but it’s available to them and I think that if people believe in themselves and their strength a little bit more, the rest can fall into place.  Whether it’s getting through a bad time or whether it’s confronting a doctor, both of which can be daunting.  Both are doable; people just have to believe in themselves enough.  So, I guess that would be my hope for anybody.