Richard M. Cohen is an Emmy award winning
television producer and best-selling author.
His new book, ďStrong at the Broken
Places,Ē tells the intimate stories of five
people living with serious chronic illnesses.
ďStrong at the Broken PlacesĒ 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
NBCíís ďTodayíĒ show, sat down with
Editor-in-Chief Gary Barg to talk of their lives
as parents, professional communicators, and
partners in care.
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 Iím
talking to groups, that youíre really fighting on two fronts.
Youíre not just fighting an illness, youíre 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 couldnít be further from the truth.
those articles make me cringe and the word that gets me usually is
RC: Itís hard enough for people who are dealing with serious
illness not to think of themselves as victims. I think that
youíre 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.
Itís hard enough to keep yourself from thinking that, especially
when everybody around you seems to want to think it. And I think
people who donít deal with illness imagine that we sit around here
all evening wailing and beating our breasts and suffering or
something. Iím not suffering. I have a great life.
I may be dealing with an illness, I may live with an illness, but
Iím not suffering.
GB: How do
you keep your communicative partnership going?
RC: The larger issue in a relationship, and itís 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, thatís the biggest challenge to a
GB: What about
reaching out and talking to others outside of your immediate family?
MV: Weíve learned to rely on friends when we need friends.
I think many caregivers donít have a fear of accepting help, but
they are embarrassed. They donít want to put people out and
are reluctant to ask for help. I think itís important to ask for
help when you need help; not to shy away from that. People
want to help; so when weíve needed friends in times of any kind of
crisis, we ask. And I think thatís real important for
caregivers not to feel that itís all on you at any given time,
because itís 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, youíve
coined some really great phrases regarding an area that we find
challenges our readers as well. Iíll 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.
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 donít think any of us should
hesitate to say to a physician, who is such an ongoing important
part of our lives, that this isnít working. I think that
people give doctors too much power. I laugh when I hear the
phrase ďdoctorís ordersĒ because I donít 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.
partner with your doctor, donít 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 wasnít the MS, it was with colon cancer when at the end of the
doctorís appointment, it was clear that Richard had missed so much
of it. Because he was hearing it, but it wasnít sinking in.
I think itís fair enough for the caregiver to be there with the
pencil and the paper and asking the questions because when youíre
the one with the illness, itís so overwhelming sometimes that you
donít hear whatís being said to you.
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
didnít 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
theyíre going through. They help other people and it actually comes
full circle in terms of caregiving.
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, itís much healthier for everybody involved and it makes
it, in some ways, light lifting because youíre not doing the lifting
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 Iíve heard somebody
say in any context, ďOh I couldnít ever deal with that,Ē or ďI
couldnít possibly cope with that,Ē and I always want to turn to them
and say, ďHow do you know? Youíre probably much stronger than
you know. How do you know you wouldnít rise to the occasion?Ē
I think that people sell themselves short. People have a reservoir
of strength and resilience that is invisible to them. Itís
something that they cannot see, but itís 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 itís
getting through a bad time or whether itís 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.