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Going for a long walk after living so narrowly By Tom Parker Special to the WC News Sometime during the two hellish years she lay immobile in a hospital bed, unable to look out a window or read or watch television or do anything other than inhabit the prison of her mind, Phyllis Burdge made a vow. If she ever got better, through force of will or spontaneous remission or act of God, she would do something wild and crazy. Like skateboard across America. Considering that she was near death's door, her body decimated by multiple sclerosis, skateboarding seemed the most improbable thing she could think of. It was more than traveling, something she had always enjoyed, and more than mobility -- it was freedom. And all through the long night of her thoughts, through the years when the disease relented and pulled back, when after 12 years she took her first tentative steps, demanding that her nurses let her do it herself, even during physical therapy with her hands and feet taped to the handlebars and pedals of a bicycle, the idea stayed with her. Nor did it fade or in any way diminish as she learned how to live again, her marriage shattered, alone, discovering the subtle, and often not-so-subtle, means of discrimination healthy people project toward those they deem diseased, or different. If anything their prejudice strengthened the idea, giving it form and substance, broadening its scope so that the improbable idea wasn't just for her but for all those other marginalized people, too, the ones who, like her, felt as if they'd lost their usefulness. The wild and crazy idea coalesced and solidified until years later -- last year, in fact -- she said to herself, "No, not skateboard. Walk." "That was the first time I wondered, why?" Burdge says. She walks with the help of a cane and a black Lab named Justice, but her steps are measured and stiff, and the careful observer will note the strain on her face as she maneuvers a body that doctors once said would never leave a mattress. Walking across America seems as ridiculous as skateboarding, maybe more so. She's had a good run since she left the hospital, helping pass the first legislation in Kansas directed toward the protection of handicapped people, spreading awareness of assistance dogs, making a life on her own accord, so why bother? Why go through the hardship? Hasn't she been through enough? She says it's to tell her story, to let others in her position know there's help. To spread the word of assistance dogs and awareness for people with handicaps. And as she tells you this her eyes take on a glow and a thin smile brightens her face, and she pauses for a few seconds before breaking into a wide grin, and behind that grin is a lot of emotion, a lot of steel, it's right there in the open for anyone to see, like how pinched her face gets when she walks only different, sort of a reverse thing, something almost fiery and defiant about it, and she says, "Because I can." And you think, I do believe she can. With that kind of will, that kind of message, hell, there's no stopping her. . . . A native of Rochester, Minn., Burdge had the kind of life most of us expect to have: graduate from high school, fall in love, get married, find a career. But unlike most of us something went haywire with her immune system. It was three years before doctors were able to put a name to her steadily-worsening condition, and by that time it was too late to do anything about it. Not that there was much they could do anyway. MS ravages her. She's down for the count and expected to remain there, locked in her thoughts and none of them good. Her husband leaves. Her thoughts grow darker. Her body corrupts. A miracle occurs. Spontaneous remission! A second chance of life! She isn't doing handsprings across the room but she's moving, or at least one side of her. The other side remains paralyzed, but she isn't giving up. Not now. She's in a wheelchair, learning the ropes. It's tough because fatigue is the worst factor, trying to move the contraption with only one hand. She hears of Support Dogs, Inc. in St. Louis, Mo., applies for an assistance dog, finally meets Alex. From the get-go it's a miracle all over again. "It profoundly changed my life," Burdge says. Alex opens the door to a new existence. A restaurant owner promptly slams the door -- his door -- and refuses to let her in. Burdge is incensed. The owner says he'll call the cops. Says he doesn't have to let her dog in, she's not blind, there's no law that says he has to. Cops arrive and side with the owner. Burdge and Alex wheel away, but after what she's been through you know this is far from being over. "If I don't fight for my rights, what good is my dog?" she asks. She takes the police report to the Kansas legislature and drops it in their collective lap. Congressman Jerry Moran takes special interest in her story. One year later, Senate Bill 36 passes, amending the law to state that "Every person with a physical disability shall have the right to be accompanied by a support dog." Period. It's 1989. One marginalized person, half-paralyzed, whose only companion is a dog, just reopened the door. And not just for her but for everybody. . . . Every grand adventure needs a title, a name, an identity. Burdge settles on the PB&J American Walkabout. No, it doesn't stand for Peanut Butter and Jelly, though she admits that if people want to provide pb&j sandwiches on the road she'll gladly accept them. Combine the initials of her name and that of her dog and -- you get it. She's also decided that walking the entire length of the journey isn't feasible, not with her disabilities, so she'll bike part of the way, some in the early morning before the heat of the day drags her down and the rest in the evening. On bike, on foot, four hours minimum. All the way across Kansas, Oklahoma, Missouri, Arkansas, Texas, Tennessee, Alabama, Georgia, South Carolina and Florida. She's hoping people will turn out to hear her tell her remarkable tale, that they'll walk along with her and Justice, or limp, or hop, or wheelchair, or use their crutches. She's hoping they'll provide some of the necessities of the trip -- lodging, food, gas money, whatever people feel is important. She's hoping for clear sailing. She's hoping for a lot of things, but one thing she isn't is anxious. Three years ago she had to have both shoulders replaced. She's in the hospital filling out forms with the help of a nurse when she notices the nurse has filled in a few blanks without her askance. When the nurse steps away for a moment Burdge tilts the form and reads it. One question asks if the patient is anxious. There's a yes checked in. Nurse comes back, Burdge tells her to cross it out. "I just assumed anybody going in for surgery would be anxious," the nurse stammers. "My guess is that she was wrong," Burdge says later. "I think a lot of people make their peace with something, and when they're ready to do it they don't have the nervousness. "I think my family and a few close friends are a little nervous about the walkabout," she admits. "I'm as excited as I can be. What an adventure! The people I will meet, the country I will see, the experiences -- ." She falters, as if overcome by the enormity of her journey. "Look, I know there are no castles in America," she says. "I've always said I wanted to go to England to touch a castle. I don't want to take my camera to take pictures, I want to experience it with my senses. I want to feel, and smell and hear. And I've said that for a long time. My close friends sometimes joke with me, 'Have you touched your castle yet?' Well, I'm not looking for castles on the walkabout, but I am looking for that sensory celebration of life. I embrace my senses so fully after living so narrowly. And I think the passion I feel for life is only going to grow." . . . Through her work as a VISTA volunteer at KSDS, Burdge has made a lot of friends in Washington County. Some have donated already to her venture; Temple Bible School provided a bicycle trailer to house Justice when Burdge is riding, and others gave Justice a new harness. But she has one more hope she adds to her long and growing list of hopes: "I'd love to have them come out and walk with me at the start of the trip." It won't be far, a mile or two or three, mid-autumn (Nov. 19), the weather cooler. Her steps, stiff and measured, will take her toward Hays, where she plans on officially beginning the trip at the hospital where she took those first steps seven years ago. It'll be just her and Justice and the long empty road stretching to the horizon like a living thing, like a promise or the fulfillment of a vow once taken when locked in darkness, and if more friends are there to walk with her then the stronger her steps will be, and the lighter her load, and the miles will be nothing compared to what she's already overcome. "It's not unlike those first few steps I took," she says. "I didn't know if I'd be able to keep standing or fall on my face. I just kept going, one step at a time. Same way now. One step. Just see where it leads."

permission given for release on Aug. 23, 2005 by Dan Thalmann, editor of Washington County News (785.325.2219
211 C. Street / P. O. Box 316, Washington, KS 66968-0368)

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