Life on Cripple Creek: Essays on Living with Multiple Sclerosis
By Dean Kramer
Demos Medical Publishing
149 pp $18.95

Dean Kramer first learned she had multiple sclerosis in 1984, but she didn't take the news well. Refusing to acknowledge any weakness in her 30ish body, she immediately joined a high-level volleyball team. "I was very gung ho, played through any injuries, and ran the legs off my teammates like a distressing combination of Gidget and G.I. Joe," she writes. Sure enough, her symptoms started to fade and then disappeared entirely. As the years passed, she convinced herself that her doctor had made a mistake. She was too healthy to be sick.

Over a decade later, Kramer found herself in a department store, shopping for socks, riding a motorized scooter because her advancing MS had given her numb feet and spastic legs. As she slowly motored through the narrow aisles in the lingerie department, a dangling brassiere got wrapped around her handlebars, locking the scooter into drive. She lurched forward helplessly, festooned with an entire carousel of bras. She eventually managed to escape the store, but not before knocking over a rack of sunglasses, a pile of glass-topped patio tables, and a display of barbecue utensils. Kramer calls it "demolition shopping."

Nobody would ever laugh at MS, but feel free to laugh at Kramer. She invites it. After all, she isn't the disease. She's a woman who's doing her best to keep up with her social life, her interests, and her chores on her small Pennsylvania farm. She calls her experiences Life on Cripple Creek, a reference to both her current condition and her favorite fiddle tune. It's the title of her monthly column for MSWorld (http://www.msworld.org), and now it's the title of a new collection of essays. Her life has its rough patches, its moments of uncertainty and sadness, but it is ultimately rewarding and enriching, both for her and for her readers.

As a general rule, any book that features a still pond on the cover can be counted on to be slow-paced, introspective, and, most likely, boring for long stretches. A reader might expect 20 pages of meditation on Kramer's raspberry patch or her observations of the local squirrels. But Kramer quickly shatters the expected calm. In the fourth essay, we discover how her wheelchair becomes a "catalyst for the character flaws of her friends." Her friend Twink pushes her down a hill at a crowded crafts festival yelling, "Get out of the way! Disabled person coming through!"

"I was used to people sighing in irritation over having to make room for my chair," Kramer writes. "Now I grinned at the novelty of people fleeing for their lives."

Life on Cripple Creek isn't a self-help manual or a survival guide. Kramer rarely provides direct advice to her readers. Instead, she expertly pulls together details of her everyday life to portray a disability mixed with undefeatable optimism. As she describes her collection of canes -- business casual, dress, and sporty -- you know she has made a certain peace with MS.

Even at the best of times, it's an uneasy peace. Kramer doesn't shy away from the many pitfalls of her disease. On one page she struggles to find shoes that are both comfortable and accommodating; on another she describes her fear that someone would have to take care of her -- and her even greater fear that no one would want the job.

Kramer has a relatively mild case of relapsing-remitting MS, but she's had the chance to become acquainted with just about every potential symptom and complication: numbness, spasticity, vision problems, muddled thinking, urinary incontinence -- the list goes on. As she puts it, "I walk like a person who's had too much to drink -- either too much alcohol, as when I stagger, or too much liquid, period, as when I am staggering quickly to a public restroom with my neurogenic bladder."

Kramer is surprisingly frank about her clouded thinking, a symptom that many people with MS don't want to discuss or even acknowledge. As her disease progressed, she went from being highly organized and reliable to a little bit scatterbrained. She started making lists, only to lose them a few minutes later. Some of her brain glitches were so strange that she couldn't help but laugh. One day, she spent several minutes trying to remember which gear she should use to back her car out of a parking space. She was trying to narrow it to D, never giving much thought to R. (After all, she was getting ready to DRIVE somewhere.)

Like other symptoms of MS, thinking problems tend to come and go. Kramer knows that "bad brain days" are only temporary, and she no longer panics when her mental wiring gets a little loose. But as much as she enjoys her occasional respites from the disease, she knows that the off-and-on nature of relapsing-remitting MS poses special challenges for patients as well as their loved ones. People who don't have MS have trouble understanding how a person could ride in a wheelchair one day and shovel snow the next. "Often we with MS are felt to be malingerers, outright liars, or totally delusional," she writes. "Sometimes, we are accused of using the disease to manipulate others." Surely many readers can relate.

Despite the hardships of MS, Kramer maintains an infectious positive attitude about her life and her disease. She doesn't claim that positive thinking can slow down MS, but she knows it helps her feel better. "Feeling better generates an energy of its own, and can carry you quite far indeed," she writes. At times, readers may feel that Kramer is pushing her upbeat approach a bit too far, especially when she refers to MS as a "gift." It's a gift that most patients would gladly return in a second.

For now, MS is nonrefundable. Until doctors find a cure, patients will have to go through their own versions of Life on Cripple Creek. There will be moments of humor and stretches of grief. And, for anyone who follows Kramer's lead, there will a time of acceptance. That's a real gift.

-- Chris Woolston, MS, is a health and medical writer with a master's degree in biology. He is a contributing editor at Consumer Health Interactive and was a staff writer at Hippocrates, a magazine for physicians. His reporting on occupational health for CHI earned him an award from the Northern California chapter of the Society of Professional Journalists.

First published October 24, 2003
Last updated October 30, 2008
Copyright © 2003 Consumer Health Interactive

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