“Illness is a Family Affair”: Interview with Meredith Vieira

I am so excited to put out this month’s interview with Meredith Vieira.   As most of you know Ms. Vieira is a journalist and TV personality.   She was the original talk show host of The View and co-hosted the Today show, the NBC early morning news program.   She currently hosts the TV game show, Who Wants To Be A Millionaire, as well as being a frequent contributor to other news shows.

I had the pleasure of meeting Ms. Vieira at a book event at the JCC in Manhattan where she interviewed  her friend/author of a new book.   At the reception afterwards, she graciously accepted my request for a blog interview.   Speaking to her on the phone was like talking to a good old friend.

The issue I focused on with Ms. Vieira is one that is unfortunately all too prevalent – that of chronic illness;  and more specifically its impact upon the family.  Richard Cohen, Ms. Vieira’s husband, has been living with multiple sclerosis for more than 30 years.  Mr. Cohen is a TV producer and writer.  He writes a most reflective and insightful column on chronic illness for AARP Magazine.  He has also writtentwo books. (referred to later on)

It becomes a ‘family affair’ to live and cope with the daily struggles and difficulties of a chronic and debilitating condition.  The challenge here is to live as best as one can, with it and despite it; and Ms. Vieira and Mr. Cohen do it well together.

I hope you get lots of take-aways from this most down-to-earth interview.   I am appreciative of Ms. Vieira’s openness and authenticity as she brings us into her family’s life, providing insight and inspiration on coping and living with chronic illness.

1. What personal qualities have helped you carry on and move in a positive direction?

For me what has helped is for Richard to be open about his illness. For a very long time he was closed.  Partly that was out of concern about how people would react to him, professionally and personally.  He kept his disease from people. That made it harder to deal with as a couple.  You knew you were part of this masking and I don’t think that’s healthy for the other person involved- the partner.  I understood it and I didn’t force the issue but I was glad when Richard decided to be honest with people.  That was the result of our older son as a very little boy,at 6 or 7, asking me late one night when the lights were off in his room, ‘what’s the matter with Dad?’  Kids are so smart.  I don’t remember what I said exactly in the moment to comfort him-something like that Dad was fine and in the morning we’d all talk about it.  The next day we did; we explained it in terms a child could understand. It was after that that Richard realized, “I want to be open about this now.”  So I think the openness has helped me.  I’m all for not burying feelings.  I think it’s much better to get it out.

A sense of humor:  We both have a pretty good sense of humor.  We can laugh at the absurd.  And when you have this kind of illness, there are moments that are really absurd.  You can either get very depressed which is understandable or you can try to shake it off as best you can, put it in perspective and move on.  I think humor helps us put things in perspective.  That has been a great coping mechanism for me as well as for Richard.  He often will lead the way.  He’ll have an episode where maybe he drops something and he gets very angry at himself.  And then he’ll make a joke; and that allows me, that gives me permission to make a joke back.  Nine times out of ten we reach that point and I think that has been tremendously helpful.

Friends:   This comes with openness. I am totally comfortable leaning on friends. We have wonderful friends who not only ask Richard how he is doing, but will ask me how I’m doing.  This speaks to the whole notion of family illness.  This is  an important message, if I was to get out anything, it is –  for those who know someone with chronic illness, ‘don’t be afraid to ask’.  We appreciate it.  A lot of people are scared to bring it up because they may feel they’re walking on egg shells around people who are chronically ill. My experience has been that most people in that situation like when it’s acknowledged and they have that opportunity to speak about it.

      2.   Did you go through a period of self-pity?  If so, what helped lift you out?

 Sure I have days when Richard will say ‘why me’ and I’ll say to myself, ‘why me’?  I knew about Richard’s illness before I married him; it wasn’t sprung on me.  He was diagnosed with MS when he was 25.  And I married him when I was 33.  He’s five years older than me.

We used to run all the time together.  We can’t do that anymore.  I love things like skiing, things that he can’t do.  There are moments when we’re talking about a vacation and we’re limited and then I’ll feel , ‘oh I really want to do that’. It’s one of those passing things.  But I also think that’s O.K.  It’s O.K to have a pity party every once- in- a-while, just let it out.  Because there is loss–  there’s physical loss and emotional loss. There’s that kind of day-to-day loss and it’s alright to feel bad about that as long as you can put it in perspective; in the scheme of things that ‘ain’t’ the biggest issue.

      3.   Please speak here to the issue of caretaking 

Caregiver is the word I use.  Richard is not in the position where he needs that kind of attention.  Because he has secondary MS, he has less ability to use his hands and eye-sight than he used to. So there are times when I am his hands or his sight – for reading a menu, tying a shoe or doing that top button on a shirt.  But I’m certainly not a full-time caregiver.  We sort of take care of each other.

I think a lot of people who are caregivers feel tremendous guilt when they allow their personal feelings to rise above those of their spouse.  It’s sort of like ‘how dare you.  That’s the person who’s ill, not you; so what right do you have?’  And I think you have every right, whatever your emotions are.

      4.   Was there a specific moment or epiphany that helped guide you to a better place mentally and psychologically, or did it evolve?

 I understood enough about MS going into the marriage in part because my dad was a doctor.  I went to appointments with Richard and I saw people younger than him who were already  wheelchair-bound.  I knew the potential progression of the illness.  It’s so unpredictable.  Will Richard end up in a wheelchair or worse – bedridden?  Is it possible; sure it is, but we have no way of knowing that’s going to be the outcome.  Every individual is different.  I knew a possible trajectory of the illness heading into it.  It sounds so trite but that expression about being hit by a bus tomorrow.  You just don’t know in life.   He could dive off a diving board and break his neck and be a guadrapalegic.  I could get ill.  You can’t live your life on the ‘what ifs’.   Because you’d never do anything.  So to me it was worth it.

This is just a part of what we deal with.  Everybody has their stuff.  This is our stuff.

There’s that wonderful story of everyone putting their troubles in a bag and throwing them all in a pile, and all you want is your own bag back.  Because it’s familiar.

Richard especially has had a bumb deal because he also has had two bouts of colon cancer.  It hasn’t only been MS for him.  I did have a little conversation with God after the second bout of cancer.  I said, “really, really, this guy doesn’t deserve all this.” I thought that was a cheap shot, just really unnecessary; we got it.(the lesson)

Take away that part of our life and there are unbelievable pluses.  It’s led Richard to a point in terms of his own reflection where he was able to write two beautiful books about chronic illness.  Write what you know.  And help people.  His books have really helped people.  To be able to have that gift where you can actually change somebody’s life, that’s a pretty amazing gift.  It came at a cost, but it’s still an amazing gift.

When he wrote about it, he was able to release and let go.  I think it was very empowering for him and I think it gave him a strength he didn’t have before.  MS does a real number on you where you feel like less of a man.  This gave him some of his self-worth back.  It allowed him to articulate it.  He had buried it.  When he started to write about it, it helped him deal better with his illness and face it. He talks a lot about denial and he thinks denial is a very good thing.  For the longest time he denied the illness and said, “I don’t care; they say I can’t be a producer, I’ll be a producer.”  It worked for him up to a certain point; but by burying it he wasn’t allowing himself to feel everything he needed to feel and to face everything he needed to face.

Writing his first book, his memoir, Blindsided, allowed him to do it in a safe way because he is a writer.  It was like therapy.  His second book is Strong at the Broken Places is a profile of five people with chronic illness.   His third book is coming out in October and it has nothing to do with illness.  It’s called, I Want to Kill the Dog.  It’s hysterical.  It’s about our history with our pets in our family.  It’s freedom again.  He said, “I don’t want to be known just as the disability author.  There’s more to me.”  He’s almost come full circle.  “MS doesn’t totally define me; it’s part of my life, it’s not all of my life.”  He’s a very funny guy and so he wrote this very funny book.

      5.   Any specific day-to-day coping skills?

 I just kind of live day-to-day.  Today was a good day or maybe today wasn’t the best day, but tomorrow might be better.  That seems to work best for me.  We’re still in that stage where that’s doable.  When you are living with any kind of illness, you really learn to appreciate the here and now.  It takes on an added value because you’re lucky to have it.  If there’s any coping mechanism  that’s what it is: try to be as much in the moment as you can be and enjoy it; or understand  if it’s not great, then this too shall pass. 

      6.   What advice would you offer people going through their own difficult situation?

In our family it has been sense of humor and honesty.

It’s important to be able to communicate.  Illness is a family affair.  You need to keep the communication going and open on all sides.  And certainly if you have kids as well.  As I said, keeping this from our kids was a little off because kids in general are so attuned to things.

Build that group of friends, that support system around you.  Go for it.  Don’t be afraid.  Don’t feel that you’re a burden to other people.  And don’t be ashamed of illness.  What you’ll discover is everybody else has their own thing.  People don’t like to talk about stuff.  They hide it but if you’re open and you say you need help, people will be there for you.  It’s important to know they’re there.  It’s like it takes a village; when there’s illness it takes a village too. Most people have been phenomenal.