[bksvol-discuss] Author with MS doesn't suffer in silence
- From: "Shelley L. Rhodes" <juddysbuddy@xxxxxxxxxxxx>
- To: <bookshare-discuss@xxxxxxxxxxxxx>
- Date: Mon, 21 Jan 2008 17:29:10 -0500
This sounds like a great book for the collection.
New York Daily News, NY, USA
Sunday, December 30, 2007
Author with MS doesn't suffer in silence
By GINA SALAMONE
Sunday, December 30th 2007, 4:00 AM
Cohen says the seriously ill share 'almost an unspoken language.'
Caption: Cohen with the people he interviewed, including Buzz Bay (top r.),
Denise Glass (seated, l.) and Ben Cumbo (foreground).
Richard M. Cohen once shied away from sharing the pain and frustration of
living with two serious illnesses.
But the three-time Emmy-winning producer and journalist finally let it all
out in a memoir published four years ago. Now he's allowing others to do the
same in his book "Strong at the Broken Places: Voices of Illness, a Chorus
of Hope," in stores Wednesday.
Cohen traveled the country, spending quality time over three years with five
men and women suffering various chronic diseases. Coaxing them out of their
shells by relating his own suffering, he got them to talk about the most
feared facets of sickness - everything from coping with embarrassing side
effects to facing an early death.
He was diagnosed with multiple sclerosis at 25. Three and a half decades
later, the disease of the nervous system has left Cohen legally blind and
unable to walk without a cane. He has also fought off two bouts of colon
cancer.
Married to "Today" show co-anchor Meredith Vieira, Cohen had trouble talking
to his wife and their three kids about his anguish. In his autobiography,
"Blindsided: Lifting a Life Above Illness: A Reluctant Memoir," he disclosed
all the details.
"I really was reluctant because I fought tooth and nail against revealing
myself," Cohen admits. "I didn't want to tell my own story because the
thought of actually laying open my life was unthinkable. But it became
apparent to me that that was the only way the book was going to get
published."
So Cohen told all, but then realized there were others who needed to do the
same.
"I always had this interest in learning how other people cope with illness,
and it was something I couldn't explore in 'Blindsided,'" he says. "When the
book came out and I attended a number of forums, I was quite taken aback
that so many people showed up in wheelchairs and on walkers and canes. Three
hundred people would come with their own stories. And I was totally
mesmerized by what they were saying."
More than 90 million Americans have chronic illnesses, according to the
Centers for Disease Control.
"Chronic illness is a snapshot of America now, as we become the oldest
population in the history of the country," Cohen points out.
And the coping mechanisms used by the sick are as diverse as the diseases
they have.
Cohen couldn't understand why Denise Glass, who's featured in his new book,
was so adamant in her "no help" attitude.
Glass has ALS, an incurable, usually fatal disease that breaks down neurons
and causes complete paralysis. While she's far from that point, her speech
and movement have slowed, and she has lost some coordination.
But Glass, who's divorced and lives alone, dismisses any suggestions to get
a caregiver. Her biggest fear is losing her independence.
She has given up looking for a love interest, insisting she's better off
without a husband and kids to leave behind or watch her suffer.
And Glass isn't close to her parents and siblings, either - saying they
never told her they were sorry about her diagnosis, and that they didn't
even sit next to her or hold her hand when the doctor told her.
"Denise was a tough nut to crack," says Cohen. "Because she's so grievously
ill, she's a bit hardened and a little defensive about the lifestyle she's
chosen, the solitude."
With patience, Cohen eventually got Glass to introduce him to her family,
and to admit that her cats comforted her in a way that the humans around her
never could.
"There's almost an unspoken language among people who deal with serious
illnesses," he says. "It made it a little bit easier and a little more
palatable for the people in the book to know that I'd been there, too."
Taking time to build a level of comfort also worked with Buzz Bay, a
46-year-old from Indiana who remains optimistic about his fight against
non-Hodgkin's lymphoma through his steadfast belief in God and heaven.
Unlike Glass, Bay has a spouse and son to find comfort in. But he still
spoke about how isolating illness can be.
"Even when you're surrounded by a loving family and an infrastructure of
support, in the end, you're really in it alone," Cohen explains. "When
you're in pain or discomfort, my tendency, and the tendency of a lot of
people, is to retreat a little bit. It really is a lonely feeling."
Ben Cumbo knows it all too well. He was in college during his meetings with
Cohen. While his peers were mingling and coming home late, Cumbo avoided
parties and was afraid to talk to girls.
Confined to a wheelchair by muscular dystrophy, he admits he's angry and sad
about his plight, and that his disability has made him self-conscious.
"Ben went through a very difficult process of trying to work through his
hangups about what other people thought about him," says Cohen. "He always
instinctively thought people saw him as less of a person and held him in
lower regard."
But Cumbo actually worked this problem out through his discussions with
Cohen. "In our last meeting, he said that the book had forced him to look at
himself and the way he responds to other people and deals with his fears,"
Cohen says. "We sometimes make things darker than they are."
http://www.nydailynews.com/lifestyle/health/2007/12/30/2007-12-30_author_with_ms_doesnt_suffer_in_silence-1.html
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