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Consider Yourself Lucky, More On Living with Chronic Illness

(By Terry Schaefer, TODAY Producer)My name is Terry Schaefer. I  have worked for NBC NEWS since 1981 and have been a segment producer at the Today Show for 16 years. As incredible as it may seem, I have been paid to meet remarkable people all over this country and tell their stories to a national audience, with our anchors and correspondents. People who are not necessarily famous, but who are oft

(By Terry Schaefer, TODAY Producer)

My name is Terry Schaefer. I  have worked for NBC NEWS since 1981 and have been a segment producer at the Today Show for 16 years. As incredible as it may seem, I have been paid to meet remarkable people all over this country and tell their stories to a national audience, with our anchors and correspondents. People who are not necessarily famous, but who are often brave and kind, talented and tenacious.  People who live ordinary lives in extraordinary ways. 

Ben Cumbo is a one of those people. A 19-year-old sophomore in college, he worries about how to muster enough nerve to ask a girl for her telephone number, or how to write the best possible paper he can. (His passion is writing.) He says he is a lucky guy who thrives on the support of his family and friends. In fact, he says, he is blessed.

Ben was diagnosed with muscular dystrophy when he was 3 and a half years old and has been in a wheelchair since he was a junior in high school.  He can’t walk or play sports or even take care of all his own needs. Living with his crippling chronic illness has been a fact of his life…and the lives of his family and friends, since he can remember.  He is different than most kids his age and that, he says, can be very lonely. 

Tyler, Ben, Debi, & Ben Cumbo at home

Muscular dystrophy is one of 40 neuromuscular diseases, is degenerative, and is slowly but surely wasting away his muscles. Medicine has slowed the progression of his disease, but it cannot cure him…yet. 

But like so many sick people, Ben and his family rely on hope. It fuels them. It staves off fear. It empowers them and enables them to go on when times are toughest. Ben’s mother Debi reminds him over and over again that everyone has a bump in the road to get over, that their bump just happens to be living with his disease. 

In January of this year, Meredith Vieira and I did a story for the Today Show on living with chronic illness, which 90 million Americans do every year. WATCH VIDEO  This is an intensely personal reality for Meredith and her family, because her husband Richard Cohen was diagnosed with multiple sclerosis when he was just 25. Years later, he survived not one but two bouts of colon cancer.  MS is also a degenerative disease, which has left him legally blind and less and less mobile.  The after effects of colon cancer have made digesting certain food a challenge, one he deals with daily.

Ben Cumbo and Richard Cohen acknowledge that living with illness has changed their lives irrevocably.  And the lives of the people they love.  Sometimes for  worse, sometimes for  better.  They did not choose illness, it chose them.  But learning to live with it has made them better people. And it has strengthened their families in ways they could never have imagined.

Richard, an award winning television producer and writer, published his first book on being sick in 2004 – it is called Blindsided – Lifting a Life Above Illness.  He is now working on a second, Strong at the Broken Places, in which he profiles 5 other chronically ill people. Ben Cumbo is one of those.  We are going to follow Ben and the others, who have a wide range of illnesses, this year, and we will air their stories when Richard’s book comes out.             

So yesterday I went to the Cumbo’s suburban Maryland home outside Washington, D.C., to check in on Ben, who was home from spring break, and his family. His mother Debi and father Ben had taken a day off from work, and his almost-18 year old sister Tyler had just gotten home from school when we arrived. Young Ben and Tyler were playing the latest version of John Madden’s video football game, laughing and talking - chilling. Earlier in the day Ben’s dad had taken him to yet another doctor’s appointment, and Debi was enjoying having everyone home.

The camera crew, Buddy Hollenbeck and John Blackman, and I did an interview with them all together, because living with Ben’s disease is a family affair. I was reminded how lucky I am.

Once again, I was being paid to learn…the Cumbos’s have so much to teach: that life is hard but if you stick together like glue as a family, in community with your friends, there is nothing you cannot handle. That illness is brutal, but when it is your reality there is no point bemoaning it. Accept it and move on. It can make you cry, it can make you angry, it can surprise and terrify you, but you can live a good life anyway.

You’ve got to laugh along the way, and live in the moment because it is pretty much all you can be sure of.  And as Debi says, this is not all there is in life, living with illness, but if it is, it is still pretty good.  Young Ben says so many people have it worse. He is not poor, or at war, he says.  He is lucky.

He hates to be a burden to anyone, but his mother has taught him that people are inherently good – so ask for help, she urges, when you need it, and don’t apologize. His father uses tough love sometimes. He pushes his son to go to the college party everyone else is going to, to be in the world, however tempting it may be to stay in the safety of his own dorm room. And his sister Tyler tells me that her brother is a great motivator who gets her through her own challenges because everyone has them, sick or not sick. “It’s not just about Ben”, she says, smiling. Debi says  they all have their hard days. She gets furious when a building is not accessible to her son or when someone parks in a handicapped spot when they shouldn’t.  They all agree that Ben is the glue that holds them together. He is one of the strongest people they know. They draw from him.

Do they live with fear, I ask, fear of what the future might bring? Ben smiles and ever so calmly says, “Everybody is scared but sometimes you gotta just learn to saddle up for the ride…fear is something to be conquered and if anything deserves to be conquered in this life it is fear.”

Ben Cumbo is not even 20 years old.  He is sick and he is lucky.

And so are we all, to know him and his family.

We will continue to follow Richard’s people this year.  And thank you to everyone who e-mailed us about chronic illness after Meredith’s piece on the Today show aired. We hope to be in touch with some of you soon.