Featured books by people affected with neuromuscular diseases include: A Sloan Product: A Memoir of a Lost Boy by Neil Selinger who has ALS; Learn Thai with Me by an author with CMT; and Zagrobelny’s Way, a book about a community leader who had muscular dystrophy.
Other reviewed books include: a book by a woman with mitochondrial disease; a memoir about the secret shame of having a disability; a guide on buying a mobility scooter; a coloring book for kids; and a developmental disabilities dictionary.
Note: Books mentioned in Quest usually can be ordered through local bookstores or online through retailers such as Amazon.com or BN.com. Reviewed books are not available through MDA.
This lovely little book takes a very small thing — a snail munching a leaf — and gracefully weaves it into a meditation on illness, strength, perseverance and biology. Bailey wrote the book during a relapse of a mitochondrial disease that sapped her vitality and left her so weak she couldn’t sit upright for more than a few minutes. Worse, she was an insomniac, her thoughts flying furiously and helplessly within her head.
“When the body is rendered useless,” she writes, “the mind still runs like a bloodhound along well worn trails of neurons.”
Knowing Bailey’s love of nature, a friend gives her a woodland snail whose pace perfectly matches her own. Lying on her side, watching the snail on her bedside table for hours, Bailey finds “my often frantic and frustrated thoughts would gradually settle down to match its calm, smooth pace … the snail was the quintessential tai chi master.”
Who would have guessed that snails could be so fascinating? Bailey is inspired to study up on her new roommate and shares the details — about snail slime (a chemical wonder), snail love habits (they’re a lusty bunch), snail shells and feet, even snail intellect — in prose so gentle that reading it soothes the mind.
The snail — which she never names — was “the best of companions,” Bailey writes. “I had watched it adapt to changed circumstances and persevere … leading me through a dark time into a world beyond that of my own species ... [I]ts tiny existence had sustained me.” She concludes with the essential wisdom she’s gained: “Lots to do at whatever pace I can go.”
Bailey lived out that philosophy in the writing of the book, which she called “sheer torture” due to the effects of her mitochondrial disease. She struggled against a mental fuzziness that made it hard to find words and if she sat at her computer longer than 15 minutes, her blood pressure dropped. “I would write at night because otherwise it would ruin the day,” she says. “It took me four years to finish — it was a very slow process.”
Her hard work paid off. The book has received numerous honors including the 2011 John Burroughs Medal Award for Distinguished Natural History and the American Library Association’s Top 10 Adult Science and Technology Books for 2010.
This well-written but emotionally difficult memoir dissects the secret shame of having a disability — and of having a child with a disability — during the first half of the last century, and the ways in which that shame trickled down to multiple generations.
Author Anne Gross, a clinical psychologist specializing in disability and chronic illness, based the book on her own memories, interviews with relatives and the late-life journals of her mother, Carol, who was paralyzed from the waist down by polio as a toddler in 1927. Reared to be a “good cripple” in the cheerful, can-do, hide-your-disability mold of Franklin D. Roosevelt, Carol was forbidden by her parents to discuss polio’s effect on her life; her mother was particularly embarrassed and guilt-stricken by Carol’s disability and was emotionally unavailable much of the time. But at the same time, Carol’s parents proudly encouraged her talents and found ways to accommodate her disability. They staunchly maintained that, other than her inability to “dance or play tennis,” Carol was no different from anyone else — if you overlook the pinching heavy metal leg braces, aching painful shoulders, accessibility challenges, constant curious stares, limited romantic options and occasional public fall. Later, as a successful musician, socialite and married mother of two, Carol, and her husband, similarly choked off any mention by their children of any feelings about their mother’s disability. This emotional slipknot was particularly hard on Carol’s daughter, author Gross.
“After years of looking into my family history, I’m convinced that just as my mother could only appear connected to her mother by appearing nondisabled, I could only feel connected to my mother by being emotionally disabled: both of us were shamed, anxious and isolated,” Gross writes. The problem, she says, was not her mother’s (or her grandmother’s or father’s) admirable refusal to let Carol’s life be limited by disability, but their refusal to acknowledge the uniqueness of her situation. Denying the impact of Carol’s physical disability created emotional disability — a hidden handicap that was far more destructive of personal happiness.
“… [I]ndividuals with disabilities need to advocate for equal worth — a phrase used by other minority groups — to define their needs on their own terms, for it is impossible for an individual with a disability to be like a nondisabled person,” Gross concludes. “… [I]ntimacy with others derives from our ability to reveal both our strengths and weaknesses, attracting generous people who care for our genuine selves.”
Baffled by Mobility Scooter Choices? How to Guarantee You’ll Pick the Right Mobility Scooter and Not Be Disappointed, Glenn Coleman, 2011, 72 pages, $17.95 (also available as an e-book), www.mobility-scooter-reviews.com. Available through online and local booksellers.
Glenn Coleman runs Mobility-Scooter-Reviews.com, a site packed with information for scooter buyers and users, including buyer’s guides, defensive driving tips and side-by-side comparisons of major scooter brands. This book includes checklists for dealing with pushy salespeople, Medicare coverage and finding financial help if you don’t have it, buying scooters online, scooter maintenance and storage, driver liability information and more.
Capable Kids Clubhouse Coloring and Activity Book by Altimate Medical is a free coloring book featuring pictures of children using wheelchairs and standers. The book is designed to be used by parents, therapists and teachers with children of all abilities, and can be used to educate and promote interaction with able-bodied siblings and classmates. Activities include coloring sheets, "Kids Like Me" trading cards, word finds, dot-to-dot pages, mazes and more. Request free copies by calling (800) 342-8968. All pages from the book can be downloaded at kids.easystand.com under "Printables."
Dictionary of Developmental Disabilities Terminology (third edition), Pasquale J. Accardo and Barbara Y. Whitman, 2011, 536 pages, $39.95, Brookes Publishing. Available online and through local booksellers.
This professional resource contains more than 4,000 disability terms and clear, jargon-free definitions. Features include streamlined entries on assessment tools; updated information on rapidly changing topic areas such as genetics and speech-language pathology; definitions of new medications and their uses, a guide to recent legislation and established laws, and terminology used in a broad range of fields, from education to medicine and therapy.
This is a book for anyone who’s ever wondered, “How can I be related to these people?” Selinger, a retired New York securities attorney, introduces readers to his younger self: a too-smart, dreamy Jewish kid growing up in the 1950s and 60s in Matawan, N.J., who is alternately smothered and ignored by his extended family of 13, all of whom live under the same roof and work night and day at Sloan Products, the family restaurant-supply and novelties business housed in the backyard. His family stories include tales of family vacations guaranteed to make adolescents curl up and die. Selinger received an ALS diagnosis in 2009, and currently is at work on a collection of essays about his experiences with the disease.
Learn Thai with Me, R.J. Huddy, 2010, 224 pages, $12, XPat Fiction, www.xpatfiction.com, (800) 322-2665. The book can be previewed or read in its entirety for free online.
As in his previous novel, The Verse of the Sword, Huddy places his story in an exotic, dangerous and isolated part of the world — in this case, Saudi Arabia, Afghanistan and Thailand. Set in the 1980s, it follows two young American men — one a black hunchback, one a gay man just coming out of the closet — who are coming to terms with their personal demons while teaching English on a base in Saudi Arabia. Touching on AIDS, religious extremism and oppression of women, the novel also explores self-esteem, friendship and loss. Huddy, a Kentuckian who has lived in Africa, Asia, Europe and the Middle East, has Charcot-Marie-Tooth disease.
For 21 years, the mainstay of the North Port, Fla., MDA fundraising committee was local restaurateur and community leader John Zagrobelny, who had a form of muscular dystrophy. “John Z” died in 2007, and this book is a collection of nearly 100 testimonials from people whose lives he touched. “He taught an entire city to live, grow, love, accomplish, do, be beautiful, great, proud and dedicated to what is important,” says one entry. “He taught by living.”
Wobbly Legs on a Firm Foundation: Finding Stability through Life’s Circumstances, Nia Stivers, 2011, 175 pages paperback, $13.95 paperback; $30.95 hardcover; WestBow Press. Signed copies available at www.wobblylegs.com.
This memoir from a young woman with facioscapulohumeral muscular dystrophy (FSHD) describes her challenges, adaptations and compromises, and the role that faith played in sustaining her on her journey. Stivers describes her FSHD diagnosis — made at age 11 even though she was a cheerleader and softball player at the time — and how it devastated her mother, who also had FSHD. Teasing in school ensued as her walk became more affected.
Stivers — who at age 30 seems too young to have accumulated enough experiences for a memoir — describes her ups and downs through college, marriage, career, foster parenthood and two surgeries: scapular-thoracic fusion surgery for her winged scapula and tendon transfers for foot drop. Throughout, she recounts the ways in which her faith helped her not only to accept her disease but to find the blessing in it.