More MS news articles for July 2001

Patients Define M.S. in Their Own Words

July 17, 2001

Writing about multiple sclerosis, the chronic neurological disorder that can impair movement and coordination, is no easy task. For one thing, this debilitating disease varies in symptoms and severity from person to person. Making matters worse, the underlying cause is unknown, and a drug that seems to help one person may not do much for another.

This book, a collection of essays edited by Margot Russell, a former television producer and broadcaster who has the disease, approaches the task by focusing on 17 patients who, without self-pity, describe their passages from diagnosis to acceptance. In doing so, they air their concerns, frustrations, anger and, ultimately, acceptance.

"When do I bring up M.S. when I'm dating?" muses one man.

"I must have created M.S. because I am no good at positive thinking," worries a young mother with the disease.

Another woman whose M.S. was diagnosed when she was 33, after she had gotten married and had finished her master's lashes out at the disease as one "with only one purpose in mind, to sabotage my spirit which had been lively and bright."

Ms. Russell's collection is about how some people cope, how they make their way through hostile territory and how they survive. A scientist in his wheelchair is strapped to a bobsled behind a team of dogs in Alaska, hoisted by crane from a research boat above the Arctic Circle and lowered to the bottom of the sea to research fish migration. A woman has conversations with her disease, pleading with it to go easy on her, then whispering a promise to develop her creative side. "He looks cynical," she says, "but doesn't advance as I pull myself from the swamp."

Still another woman (M.S. afflicts twice as many women as men) vows to "rebuild" herself after coming up with her own version of the Humpty Dumpty nursery rhyme. She asks: "What if the rhyme ended with our dear old egg picking up his own pieces, pulling them all together and becoming whole again?"

Perhaps, Ms. Russell suggests, people are most defined by moments of adversity. She writes: "Many people have come to see disease as a gift in their lives. Often, they learn that they are more than their disease, and once freed by that certainty they go on to live the rest of the story."

Typical of such definition was one woman who had lost her medical certification and could no longer work as a pilot or air traffic controller. She pursued the Federal Aviation Administration until she was recertified. Five years after learning she had M.S., she was flying again.

"All thoughts of disease are left behind me as we leave the ground," she writes. "There is nothing in my life at that moment except for the flight, the inextricable roar of the engines, the feeling of freedom in the air. I think, this is what is meant by living in the moment."