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Unmasking blessing October 1, 2000 Joan E. Blessington Snyder gets excitable, but it can be hard to tell. Where once the most vivacious waitress/bartender at Peoria Pizza Works might wink and smirk and laugh raucously, she now nods and crinkles her eyes. Where once she might juggle three mountainous plates of salad while tiptoeing sideways through close-set wooden chairs and hollering jokes with five tables of patrons simultaneously, she now struggles to speak above a whisper. And where once she would stay up and party to help promote Peoria's late-night blues scene, she now needs a nap before bed. Getting to middle age is a long road for all of us, but it has held some extra bumps and turns for Joan. She still gets excitable. She still tends to generate a party wherever she goes. But these days most parties must come to Joan. For the last 11 years, since she was 38, Joan has been grappling with symptoms of Parkinson's disease. A particularly sad and vicious illness that affects more than 1 million Americans, it gradually robs people of their physical abilities while leaving their mental capacities intact. Parkinson's has replaced Joan's once-animated face with its own flat mask. It has taken her liveliness and made her confront death. It has taken her wide-ranging interests and shrunk her world to her own four walls. It also made her co-author a book reviewed by magazine editor Helen Gurley Brown, sparked friendships with people around the world (including a pair of multi-millionaires), and got her picture taken with actors Richard Dreyfuss and Ted Danson. Once again, just last weekend, Joan was the toast of the party. This time it was a seven-day fete in New York City - and Chillicothe's Joan E. Blessington Snyder was one of the guests of honor. Being diagnosed with a progressive neurological disorder is not party-inspiring news. No one wants to think she is going to have trouble walking and talking, that she needs brain surgery, that she may shake and drool, that she may die. Fortunately for Joan, she was diagnosed during the advent of the Internet. Not only is it a valuable source of medical information, but also computers can erase many of the problems generated by slurred speech and difficult movement, and ease the depression that often follows the disease. As you might expect, Joan logged on and made friends. During the past decade, she has been able to share the grief and challenges of Parkinson's with others who understand, including poet/writer Dennis Greene of Perth, Australia. "It seems as God takes away some of your talents, you turn to other things," she says. Writing vents the anger, the fear, and the frustration, but it is not the only creative outlet unleashed by Parkinson's, and the Internet is not the only way to make connections. Joan was sitting in a Chinese restaurant when someone overheard the conversation and introduced herself. The woman's name was Jane Scott, and her father, Claude Scott, had been a teacher in Chillicothe for many years. Jane and family friend Marc Esser had chronicled Claude's decline and death from Parkinson's in an exhibition of paintings and photographs they called "The Letting Go - A Parkinson's Story." When Joan found out there was no money to exhibit the artworks and they were confined to storage at Caterpillar Inc., she had "a fit." Her fits usually turn into action, and that art became a key part of the first Parkinson's Awareness Day, staged in 1999. Since then, she helped set up a second Parkinson's Awareness Day, arranged for a dozen others with Parkinson's (including Greene) to meet in person for the first time and became one of five national board members for People Living With Parkinson's. Oh, yes. And she co-edited a book. Voices From the Parking Lot It wasn't easy, but in retrospect it seems inevitable. In seeking money to exhibit Scott and Esser's work, Joan got to know Princeton, N.J.-based Parkinson Alliance vice president Margaret Tuchman. A key figure in the fight against Parkinson's, Tuchman was diagnosed with the disease in 1980, and helped lobby for the Morris K. Udall Parkinson's Research and Education Act. Four years ago, her symptoms had become so severe that she was falling down in the family's real estate management office where she worked. Since then, Tuchman and her husband, Martin, have devoted much of their time and fortune to finding a cure by 2005. Martin Tuchman is CEO of an incredibly profitable cargo container supply company called Interpool. The New York Times reports that with 125 employees worldwide, the company had $22.6 million in profit last year, which was an off year. Obviously, the Tuchmans have resources to mobilize, and they've done it in a cunning way. The Parkinson Alliance works to coordinate information between the varied Parkinson organizations. And every dollar it raises is matched by a dollar from the Tuchman Foundation they started with Martin's brother, Herbert. The money is used strictly to fund pilot studies on the cutting edge of research. So when Margaret Tuchman learned of all the art and the writing and computer connections, she saw what Joan had not: A book. "I was always struck by the talents and sensitivities of people with Parkinson's," Tuchman says. "When I saw the pictures that Jane Scott and Marc Esser did, the whole thing fell together." Joan and Dennis Greene collaborated, writing some pieces and compiling contributions from other people. Poems and reflections on the disease were selected from central Illinoisans - like Tom Kelly of Peoria and Claude Scott's granddaughter Sarah Ragains of Eureka - as well as contributors around the United States. The first version, like Parkinson's itself, was stark. When local photographer and author Jack Bradley heard about it, he bluntly told Joan to forget the whole thing. She cried, then decided to make him read it anyway and stuck the manuscript on his doorstep at 3 a.m. A sudden onset of gout in his toe had kept Bradley awake and feeling bad about the encounter all night long. Finding it outside, he sat and read the entire book, then called Joan back. "This is amazing," he said, shifting immediately into one of her biggest supporters. That was many changes ago, and the evolution has been painful at times. The final version, now called "Voices from the Parking Lot" and subtitled "Parkinson's insights and perspectives," has been toned down considerably, in an effort to make it more palatable. As Parkinson Alliance executive director Carol Walton says, the book provides information that was once hard to find "in not a negative, not a whiny way." Dennis Greene sees it as a book that can apply to anyone. "The book is not about Parkinson's, it's about people. It's about how people respond to life-altering circumstances. ...' We all happen to have something." The Tuchmans believed in the project so much that they contributed $50,000 from The Tuchman Foundation to print the books. Their involvement persuaded Helen Gurley Brown, editor-in-chief of Cosmopolitan International Editions, to write a review in the front of the book. "As an editor I marvel at the writing ... so beautiful," her review says, in part. "Voices from the Parking Lot" was launched Sept. 24 along with the Parkinson's Unity Walk in New York City's Central Park. Joan and her husband Stan Snyder were guests of honor at several special events. "It's like we won a contest or something," Stan says. "We were treated like stars." Joan saw a few, too. "So I was sitting at the table, selling books," she says. "Up walks this short little guy, bald head, freckles ... He started talking about the book. I realized it was Richard Dreyfuss." She met Helen Gurley Brown and Ted Danson, as well. But there were so many people around that husband Stan missed all three. "And I wasn't 50 yards from her the whole time," he says. Jane Scott was unable to go to the book launch, but she is still pleased to see her artwork become public in a book dedicated to her father. "I think that's a very big honor, for both him and my family," she says. "It's been a long time coming, since we did this exhibit, to see it leap forward like this. Joan has done so much for that." There's plenty left to do. Five thousand copies of the book were printed, and 2,000 must be sold to break even. Although Harvard University bought 100 copies and Martin Tuchman bought 600, there are plenty left to go. The book costs $25, plus shipping and handling. Net proceeds will be used to finance pilot study grants under the name "Voices from the Parking Lot." Copies can be ordered from The Parkinson Alliance, 1-800-579-8440. "We are eager to continue," says Margaret Tuchman. "This is not a one-shot deal." It may not show, but Joan E. Blessington Snyder is excited to be onboard. by Terry Bibo [log in to unmask] The Peoria Journal Star 1 News Plaza, Peoria, IL 61643 USA (800) 225-5757 http://pjstar.com/news/bibo/cop2663a.html janet paterson 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd TEL: 613 256 8340 URL: http://www.geocities.com/janet313/ EMAIL: [log in to unmask] SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada