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by Susan Dion
January 1, 1999
[Note: This article was written by Susan Dion, author and founder of the WRITE NOW program.] I quietly work from home on the small project, WRITE NOW. For several years, it was literally run from my bed. Files and orders remain at the bedside, but I manage a bit better on most days. I consider WRITE NOW a work-in-progress. Someday I may get it "right," but in the interim it appears to fill a need. Written from my own experience with illness, pain, and disability, the book also incorporates the voices of others. It was pieced together very slowly and test readers provided comments on early drafts. Test readers were not professional "experts" or writers but ordinary people coping with the extraordinary circumstances of disability and illness.
WRITE NOW often assists folks in shock -- people struggling with a whirl of emotions as they confront a life-changing illness, disorder, injury, or disability. Many face penetrating, immobilizing grief from the losses sustained (in body/health, income, work, identity, skills, former expectations, intellect, friends, etc.). Many are medically fragile (some confront a terminal prognosis) and emotionally "down" (often depressed, sometimes hopeless and suicidal). Numerous individuals feel isolated and alone. Many suffer from a lack of support and scant resources.
While WRITE NOW was initially envisioned and developed as a resource for the ill and homebound, it has reached a much wider audience. The book appears to provide hope and help to diverse folks of all ages (including children and teens) dealing with a broad range of conditions and varied levels of debilitation and disability (both long- and short-term). Health-care professionals and agencies, patient organizations, libraries, schools, advocates, and varied facilities and programs have creatively utilized or shared WRITE NOW with people living with disability. In addition, loved ones and caregivers sometimes use WRITE NOW to improve their own understandings and methods of coping. Each week, I'm surprised to hear from someone on yet another new use of this little book. In February [1998] for example, two sets of parents reported using suggestions from WRITE NOW to help their school-age children. The children are all healthy but they'd lost a sibling to cancer and they were trying to somehow make sense of their emotions and thoughts. (In one family, a three-year- old sister had recently died.) Clearly, assisting kids who'd lost a brother or sister was not an intended goal of WRITE NOW but it points out the universality of some elements contained in its pages.
Writing can be transformative -- regardless of how fragmented, ugly, or incoherent the words. No matter how basic or simple, writing allows one to grapple with life issues. It provides a safe place to slowly confront conflicting and confusing emotions. Writing may offer comfort and escape. It has the potential for fun and recreation -- an often forgotten and neglected part of life for a segment of those sick, debilitated, and disabled. While writing may appear to be selfish or self-indulgent, it is one accessible, free, flexible tool for coping with illness and disability -- on many levels and in numerous forms. (For those unable to write, alternate methods are suggested.) While transformations are painfully slow and usually complex and grueling, writing offers a means to better coping. Along the way, many folks start to live again -- though their lives may look weird and different to "outsiders." (In fact, for those impacted by life-altering conditions, their new lives are typically a radical, disheartening departure from their earlier healthy experiences.) The movement forward is tentative and frightening, irregular and frequently circuitous, and very tough.
To receive a free print copy of WRITE NOW, please send a self-addressed and stamped ($1.26 in postage) 6"x9" (oversized) envelope. (For print requests outside the U.S.A., send six international postal coupons or $5.00, U.S. funds.) The guide is also available for desktop publishing or personal use on a Macintosh in Microsoft Word v. 4.0 or v. 5.1 in consecutive-page and printer's saddle-stitch forms. To receive, send a 3.5 in. disk (DD or HD) and self-addressed, appropriate-sized return mailer with correct postage.
Address requests and all correspondence to: S.Dion/WRITE NOW, P.O. Box 341, Penns Grove, New Jersey 08069-0341 U.S.A.
New in 2002: The Renal Network, Inc., of Indianapolis is the generous web host of a large-print version. Visit www.kidneypatientnews.org (go to "Resources" and click WRITE NOW).
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