Words of experience
Plenty of people believe their lives are captivating enough to be page turners, but transforming their impressions into book material can be a harrowing tale.
Although the prospect can be challenging, some people with neuromuscular diseases have pushed their experiences into publication. Writers who understand the stages of the process and the potential rewards have an advantage.
Traditional publishers pay for their books’ editing, design, production, and marketing through bookstores and advertising. But a growing number of small publishers offer only some portion of these services. Self-publishers must pay all costs themselves. Other authors have chosen the e-publishing route — publishing the book online where readers can download it for a fee.
Those who want to share their stories can learn from the experiences of others who’ve put their words on paper, or on screen.
Utah Assistant Attorney General J. Stephen Mikita, 49, is one such person.
It took him six months to write his book, The Third Opinion, about his life with spinal muscular atrophy type 2. Soon after completing his manuscript, Mikita lost his physical ability to write. He edited his work by computer, however, through dictation to an assistant. It took three years to get his book published, in 2001.
“The most challenging part was getting a publisher interested in the manuscript. I received many rejections. That was discouraging. But, as I have learned throughout my life, it only takes one opportunity,” Mikita said. “I had faith in my voice and my perseverance. I knew it would get published by someone, somehow. It was a matter of when, not if.”
Mikita had met television personality Leeza Gibbons at the 1992 MDA Telethon when she, as a co-host, presented him with the Association’s first National Personal Achievement Award. Later, in 1999, Gibbons invited Mikita to appear on her talk show. Having become fascinated with his story, she devoted much effort and energy into finding Wings Publishers, which took on Mikita’s book.
Authors probably will want to exhaust as many companies as possible that will pay for all of their book’s design and editing work as well as its marketing, said Ginger Watkins, president and owner of Wings Publishers. Authors with the highest success usually accept a percentage of the royalties and the fact that the publisher temporarily holds the copyright.
Wings Publishers didn’t cover the cost of producing Mikita’s book, nor did it participate in any of the sales process. That effort, for several thousand copies, Watkins said, can take many, many hours of work and some luck.
Mikita used as many angles as he could to sell copies of The Third Opinion. Gibbons came to Salt Lake City for a day of book signings. He also capitalized on his own celebrity, he said, and convinced both major Salt Lake City newspapers to review the book.
Mikita also did several radio interviews, and every time he gave a motivational speech in Utah or elsewhere, he sold books after the speech and included the publication of the book as part of his written introduction.
From his perspective, Mikita said, authors need to hold steadfastly to certain convictions:
“Believe that you have something to say. Remain optimistic and persistent. Have faith in yourself. Communicate your ideas firmly, candidly and concisely.”
He hopes his book stands as a beacon that life is worth living no matter how pronounced a disability or what stage of a progressive disease the person is experiencing. “You can still touch, contribute and participate in the American dream, which, I believe, I continue to live,” he said.
Mikita said his story has the capacity to reach a broad range of readers because it touches on fundamental qualities we all share. “We all have adversity and challenges in our lives. It is how we choose to address those challenges that define who we are and the type of life we ultimately live.”
Joe Martin, 64, who was found to have amyotrophic lateral sclerosis (ALS) in 1994, has a similar viewpoint.
In describing why he wanted to write a book about his experience with ALS, Martin said, “I was convinced that people can recover life after any trauma, including a diagnosis delivered as a death sentence.”
Martin began writing in March 1997, using the Eyegaze augmentative communication system from LC Technologies. He e-mailed drafts to his co-author Ross Yockey, who, in turn, e-mailed his critique and editing to Martin. The book, On Any Given Day, was ultimately published in September 2000.
Martin relied on an agent to connect him with a publishing company. John F. Blair Publishing in Winston-Salem, N.C., doesn’t typically publish stories related to disability, instead focusing on books about the Southeast — travel guides, folklore, history and cookbooks.
But Carolyn Sakowski, president of Blair, said her staff knew of Martin’s many contributions to the Charlotte community and wanted to help him. Plus, the arrangement included a guaranteed order for several thousand copies of the book, which Martin's previous employer, Bank of America, wanted to distribute to employees for inspiration.
It was important to Martin, he said, that the book “include experiences and perspectives other than just disability.”
Anyone who has experienced any severe disappointment, like a fatal diagnosis, divorce, failure in school or termination from a job, is a potential reader for his story. The message Martin hopes people take away from reading his book: “To cherish life in any circumstance.”
Karen Jorgensen, 63, of Berkeley, Calif., can relate to a live-in-the-moment philosophy. Having received an ALS diagnosis in April 2002, she spent some months seeking a publisher for her manuscript, Falling Practice. She started a publishing company, Silent Press, which is slated to publish the book in mid-September.
Jorgensen’s book not only tells her story with words, but also represents her daily routine in pictures captured by professional photographer Erin Lubin. They ultimately chose to self-publish to ensure that the images in the book are of the highest quality.
Writing this book was a natural approach to making sense of her experience with disability, Jorgensen found. She said, “I have to take my life back and I think writing does help you do that. Writing is a process of thinking for me.”
Publishing, in general, is a process Jorgensen understands after developing several curriculums during the 20-plus years she spent working in education. Still, securing a publisher for her memoir proved to be a tumultuous feat after distributing about 60 proposals.
“Rejection is the hardest part,” Jorgensen said. Knowing that the market for her book may be small, she understands that fact doesn’t reflect on the merit of the work.
“The piece is quite universal, I think, even though it’s about ALS, it really isn’t. It’s about living and dying,” she said. For her, the number of people who read the book is secondary.
When writing about your life, Jorgensen said, “The goal is to make sense of your experience. It’s really done for you. You release yourself.”
Writing can be an ideal activity for people with disabilities because, she explained, it can be healing for someone whose physical strength is becoming increasingly limited. The effort Jorgensen described is freeing: “It is simply going as deep as possible, giving yourself the time and space and just knowing that your audience, if nothing else, is your family.”
The audience may be small for personal accounts about life with a disability, but Jorgensen believes people will read.
The Advocado Press in Louisville, Ky., publishes books about the disability experience — usually one or two titles a year with political themes.
“A book about life with a disability would have to focus on the political or social aspects of being disabled in order for us to consider it,” Editor Mary Johnson explained. “We'd love to see work from writers exploring the intersections of ethnicity and disability, sexual identity and disability, writing that's experimental; work in which it's clear that the writer has thought about disability culture and aesthetic practice.”
To work with the established publishing firms, Johnson said, it’s crucial for a writer to have an agent. Another reality is that many authors end up doing most of their own marketing — no matter whether their publishing company is the Advocado Press or Hyperion.
Identifying the potential reader is the key to finding an appropriate publisher, Johnson said. She advised asking yourself: “Why would people who don't already know you want to read your book? What will they get out of it? What will make them pick it up in a bookstore?”
“The stronger a case a writer can make that the book will interest a large audience, the better shot at finding a publisher,” Johnson said.
To proceed with the process, she suggested studying books about publishing and finding an agent. Diligent Web searching, Johnson said, can lead writers to small, independent presses. With desktop publishing programs and retail outlets like Amazon.com, she added, writers can go far, but the complication always relates to marketing.
Lana Wegeng, managing editor of Columbia Publications in Champaign, Ill., offered parallel advice: “I believe it is very important for the writer to consider the potential reader, the true purpose for writing the book (to make him/herself feel better, to inform others, to generate pity or to whine, and to make money), and the writer’s ability to market the book and the cause.”
Among the 75 titles Wegeng has published since starting her business in 1995 is Look Beyond This Cover: The Bryan Pratt Autobiography. The book relates how Pratt leads his life with facioscapulohumeral (FSH) muscular dystrophy.
Wegeng served as an ideal subsidy publisher — someone paid for services to edit, produce camera-ready copy and design a book cover, for Pratt, not only because of her publishing experience, but also because she understands disability. She has rheumatoid arthritis, fibromyalgia and osteoporosis, and her mother had ALS.
“The writer should try to find a publisher that will give the client personal attention and one who is genuinely interested in the writer’s life story as opposed to the project being just another job,” she said. “I try to build a rapport with my authors.”
Pratt, 32, said finding a publisher was the most challenging part of the entire book process. In the end, Columbia Publications enabled him to help others with disabilities.
He initially started writing as a way to come to terms with his muscular dystrophy, but, he added, “It became a book about how to deal with the curve balls that life throws your way. You never know who will pick up the book and find the inspiration they need!”
Author Pamela Walls, of northern California, had a comparable desire to help people, but her approach was different from Pratt’s.
Rather than developing a memoir, Walls wrote fictional books for 8- to 14-year-old girls about a character named Abby, who has Charcot-Marie-Tooth (CMT) disease, a condition both Walls and her daughter live with.
“I hoped it would be an encouragement to her and others that we can be successful in spite of disabilities,” Walls explained. “I wanted to 'show' how that might look — when a character relies on her other talents, like a quick mind and a compassionate heart, instead of a strong body.”
Having written eight books about Abby, Walls said she isn’t writing more for the Abby Adventures series, but the reader response is rewarding. She’s received fan letters from people with disabilities ranging from an amputated leg or a bad heart to depression.
“I can honestly say we all deal with something in life, but friendship, imagination and kindness go a long way to helping us survive and thrive!” The message Walls tries to convey is positive: “Someone with spunk and enthusiasm can overcome hardships.”
Walls discovered she had CMT as an adult, about 12 years ago. Initially, she considered writing articles about her condition, but she was unable to get published. Her Abby books gave her an opportunity to educate and entertain.
For others who want to write about their disabilities, Walls advised, “It's important to be the best writer you can be. We have to earn the right to be heard through study of writing techniques, so I'd encourage potential book writers to go to classes, join a writers' group and attend seminars to learn all they can.”
She concluded that living with a condition such as CMT can almost be an asset when writing: “Every story is about challenges of some form, and having a disability gives you a challenge that will add to your story.”
Bethany Broadwell lives in W. Bloomfield, Mich. A freelance writer and Web designer, she has spinal muscular atrophy.