All About Multiple Sclerosis

More MS news articles for August 2003

MS and the ordinary life

Codorus Township author shares everyday wisdom on living with multiple sclerosis

http://ydr.com/story/living/12018/

Monday, August 4, 2003
Karen Muller
Daily Record staff
York Daily Record

Dean Kramer has lived two lives.

The 52-year-old Codorus Township woman has lived a life of a musician, trained in composition at Mannes College in New York.

She has played strings, keyboards and percussion.

She landed jobs writing music and playing five-string banjo with a square dance band.

She wrote the lyrics for an off-Broadway musical on the life of Will Rogers. Her work on the documentary film “Me” earned her a Golden Eagle award from the American Society of Cinematographers.

She was not only a musician; she also took pride in her athletic ability. She skied cross-country, cycled the Pine Barrens in New Jersey and played volleyball competitively.

“What did the world owe me?” Kramer says of her philosophy.

Her 14-year-old West Highland terrier Griffin dozes at her feet under the kitchen table.

The quiet is broken by the soft chirping of birds in the trees outside her windows and an occasional car passing by her home on Bonnair Road.

“What could I get from the world?” she repeats, still remembering the first life, nearly two decades ago.

She shakes her head in disbelief.

Then there was the second life, which she says taught her that the first one was a selfish existence.

As she says, her life on Cripple Creek.

She moves slowly through her kitchen. Her gait is awkward, but her expression and manner are open, gentle, self-assured.

She speaks of the writing of her everyday experiences and lessons learned after contracting multiple sclerosis in her book, “Life on Cripple Creek,” published by Demos Medical Publishing in December.

The book is a collection of essays, written through four seasons of having MS. She discusses topics such as stress — something that may worsen the symptoms of MS — and the challenges MS poses for relationships and mobility in daily living.

The essays were first published in 1998 through 2002 as monthly columns for the MS World Web site, http://www.msworld.org.

Some of Kramer’s essays appeared in “When the Road Turns: Stories By and About People With Multiple Sclerosis” by her friend Margot Russell.

Afterward, Russell encouraged Kramer to write her own book and served as her agent.

Kramer never thought of herself as a writer. She still doesn’t think of herself as an author.

“My writing was always for a purpose,” she says.

The columns, then the book, were meant to encourage people with MS to do more than cope with the disease, she says.

“This book is an invitation to people with MS to get off their front porch and have adventures,” she says.

But when she says adventure, she doesn’t mean sky diving or running marathons.

She means the ordinary, day-to-day life kind. She speaks of being able to mow the grass when she is in remission, shovel snow to make a path for her motorized scooter in winter, enjoy the company of friends year-round and relax in her peaceful sanctuary — the rural surroundings of her home next to the Centerville Creek.

She writes of accepting her need for adaptive devices and her need for other people. As the disease progressed, it affected her mind, body and spirit.

The title of her book partly came from a song she used to pick on her banjo, “Cripple Creek.” And from another favorite song, “Up on Cripple Creek,” by the 1960s group The Band.

She says she prefers the word crippled to disabled, because disabled calls “able” to mind as an opposite.

She gives thanks for the things she is still able to do, instead of thinking of what she can no longer do. Even if the “can’t” list grows longer than the “can.”

Of course, she didn’t always see MS as the “blessing” she calls it now.

This was a lesson she had to learn on Cripple Creek.

When she first felt a numbness in her foot, then her leg, in the mid-1980s, and a doctor made the initial diagnosis, she ignored it. It didn’t fit in with her first life.

And the numbness went away, so it was easy to “forget” that she had MS, a progressive disease of the brain and spinal cord.

She lived 10 more years in denial. She writes of this dark time, somewhere in between the first life and the second, in her chapter, “The Abyss.”

Not willing to accept MS, she investigated carpal-tunnel syndrome, vitamin B deficiency and allergies. She pushed herself to continue living at the same breakneck pace she had lived before.

“Remember those cartoons in which a character runs off a cliff and keeps going, legs churning in mid-air over the chasm?” she writes. “When he notices he’s no longer on solid ground, he plummets. I was like that character for a long time, until my symptoms reasserted themselves.”

She grew angry with her leg, which began to drag and interfere with skiing, playing volleyball and her social life. She dealt with sudden, horrifying physical problems, such as a temporary blindness in one eye.

She fell through her abyss for several years, she says. Then, for whatever reason, she decided she wanted to be different. It was in the choosing that she found strength and emotional healing.

Perhaps MS was not a curse, but a blessing, she writes. Never knowing how she would feel from one moment to the next and dealing with the struggles of the disease was a gift, teaching her and those close to her to accept the uncertainties in life.

“We get discouraged, frustrated, angry and defensive,” she writes. “But many of us do learn to let go. Heck, many of us can’t even count on getting out of bed from one day to the next and putting our pants on one leg at a time . . . .

“And tomorrow, whether or not I can get out of bed and put my pants on one leg at a time, I and my loved ones will continue learning the lessons of MS here on Cripple Creek.”
 

Copyright © 2003, York Daily Record