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August 7, 2003 ALS battle inspires healing tool, The Turtle
Journal In a case of tragic irony, it took one of nature's most insurmountable illnesses to ravage Bob Mendenhall, a man described by family and friends as seemingly indomitable. Mendenhall, a longtime Jamaica Plain resident, was diagnosed just over a year ago with amyotrophic lateral sclerosis, a disease better known to many as ALS or Lou Gherig's Disease. What started as muscular weakness, evolved rapid-fire fashion to a nearly complete loss of muscle control that stole the ability to walk, move, swallow and breathe without assistance. Unlike paralysis, which takes away sensation with mobility, his particular variety of ALS provides the living hell of full sensations. The painful experience of having a raging itch that he cannot scratch, is an almost daily frustration. Though some would consider dementia to be a way to surrender quietly, the disease offers no such respite. But, for Mendenhall, being alert and vibrant, even if he is immobile, has been a life-affirming blessing. An avid musician and audiophile, Mendenhall didn't let the disease keep him from his career as a music teacher. A specialized wheelchair, and the help of friends, have helped him keep doing what he loves, even if his voice has been reduced from a commanding voice to soft-spoken . Now, well aware that the remainder of his time is limited, Mendenhall has taken stock of his life and made peace with death. It is symbolic, perhaps, that he and his wife, Ginny, recently paid a visit to Lake Hibiscus, a watery vista at Forest Hills Cemetery, for the annual Lantern Festival. That event is a Buddhism-inspired ritual that celebrates those who have passed on with a unique mix of glorious spectacle and reflective tranquility. For his finale, Mendenhall has orchestrated a similar approach. For several months, he has written The Turtle Journal, an online site, www.turtlejournal.org, that documents his life and the disease that is stealing it. Such a collection of photos, letters and stories might easily have been a mere exercise in "blogging" intended for a close circle. But in Bob's hands, the journal has taken on a life of its own. E-mails and letters come from all over the world, many of them from terminally ill readers who have found solace in his writing and poetry. There has been interest in turning the site's content into a book and it is currently used as both a teaching and healing tool at schools, hospitals and hospices throughout the country. Janet Cromer, a JP resident and longtime friend of Bob and Ginny, said that she is constantly inspired by his ability to reach out to others, even as he faces an internal struggle. She added that Mendenhall's efforts to reach out to his friends, rather than withdraw, has led to the formation of a "Circle of Support," a dozen or so people who regularly gather at his home to share stories, offer assistance, and simply enjoy the company of their good friend. Because many of Mendenhall's close friends are musicians, there have been living room concerts and intimate performances by soloists. Last week an a capella group serenaded him with an afternoon performance. Mendenhall is grateful for the tremendous support he has received. "An outpouring of support is exactly what it has been," he said. "At the end of each Turtle Journal we close with a phrase that Ginny came up with, 'Love and support is all around." It has been truer and more abundant that either of us could ever imagine. It has offered us many, many lessons in receiving, opening one's heart to let the love in. More than anything else, this illness and situation has been, for Ginny and me, about learning lessons about love and light. It shows the enormous potential of the gifts that we have in us. It makes you believe in hope, faith, and love."
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