Note: Unless other contact information is given, books mentioned in Quest can be ordered through local bookstores or online through retailers such as Amazon.com or BN.com. Prices are subject to change and so have not been quoted here. Reviewed books are not available through MDA.
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|The author with his family as passengers (from left): wife Sue and sons Shane and Andrew.|
The Sidecar Kings, Jon Burcaw, 2011, 100 pages, $11.95, e-book available, Outskirts Press. Available at outskirtspress.com or through major booksellers.
Jon Burcaw, author of The Sidecar Kings, packs a lot into a short chapter book, from a life-or-death motorcycle ride in the rain to a life-over-death conversation between a young MDA camper and his camp counselor.
Burcaw aimed the book at “middle schoolers with a good vocabulary,” but it’s not a bad read for adults, too. Gentle but true, it features motocycle lore, behind-the-scenes looks at MDA summer camp, and realistic portraits of campers and true-blue Harley-Davidson motorcycle fanatics. Ever wonder what it’s like to ride when you’ve passed a pack of motorcyclists on the road? After you read this book, you’ll have a much better idea.
Anyone who’s been at MDA summer camp when the Harley-Davidson motorcycle riders arrived will get this story right away. A cabin of campers names themselves “The Sidecar Kings” in homage to the yearly motorcycle sidecar rides. But as they breathlessly await the highlight of their week, a severe summer storm puts the riders in serious danger high up in the Pennsylvania mountains. Will they have to turn back?
Burcaw says he wrote the book to “drive home the point that we all face challenges every day and the choice to decide to rise above those challenges, is ours.” Burcaw says he’s gotten particularly good responses from teachers who’ve shared Sidecar Kings with their classes. One young reader wrote Burcaw, “I told my mom what you said, ‘There is always a challenge in your life. You just have to wait for the next cool thing to happen.’ She said it was true.”
Burcaw says he grappled with whether to make the story fact or fiction, and ended up with a little of both. The father of two sons — one of whom is a 19-year-old college sophomore with type 2 spinal muscular atrophy — Burcaw is a self-described “bit of a nut” who rides his motorcycle to work in Pennsylvania’s 9-degree winters, and goes miles and hours out of his way to help others. He’s also a wizard at fundraising — and at having a very good time while doing it, raising more than $120,000 for MDA over the past decade through his rides with the Eastern Harley Dealers Ride For Life. (For more, see Half the Fun Was 'Gettin' There,’Quest November-December 2008.)
Sidecar Kings is another way Burcaw is having fun. A production coordinator for FlexLink Systems, he finally began to put his English degree to use in 2008, writing a few articles for Quest (see Burcaw Boys a Dynamic Duo, Quest January-February 2008). Now, with the publication of the book, he’s been squeezing in time to go to book signings and radio interviews (by motorcycle, no doubt).
In this year’s Ride for Life, he’s set himself a goal of raising $25,000 for MDA and is hoping profits from the book will help him raise that total. Given the energy and drive of the Burcaw family, there’s no doubt he’ll make it.
Perspective from an Electric Chair, Mo Gerhardt, 2011, 220 pages, $27.99 hardcover, e-book available, AuthorHouse, authorhouse.com, (888) 519-5121. Available online and through local booksellers.
With irony and insight, this anecdote-filled book introduces readers to a life lived with profound muscle weakness, and the ways in which a determined individual can draw motivation from that experience. A true “transition” story, it starts with childhood dreams and carries on through the pains of puberty, the challenges of college and the independence of adulthood.
Gerhardt’s first diagnosis was Duchenne muscular dystrophy, and later was changed to limb-girdle muscular dystrophy 2D. A graduate of Michigan State University with a bachelor’s degree in business administration and a master’s in athletic administration, the 34-year-old works in the College of Natural Science at MSU, and is employed through the Spartan Sports Network as the MSU Women’s Basketball radio analyst.
Author, motivational speaker and power hockey player, Gerhardt also was the MDA National Personal Achievement Award recipient in 2007. He lives with his service dog, Ted, in Bath, Mich.
In Your Face Duchenne Muscular Dystrophy All Pain … All Glory, Misty VanderWeele, 2010, available through MistyVanderWeele.com.
This book provides a parent’s view of Duchenne muscular dystrophy. Written during her son Luke’s senior year in high school as a graduation gift, VanderWeele describes how she had to “change my internal belief system and the way I perceive everything about who I am and about life in general to not only survive but thrive.”
The book touches on the anger and sadness of living with DMD, but also the success, love and fun that the disease can’t erase. (MDA’s online article Born to be Wild — and Safe, Quest March-April 2007, describes "Luke’s Buggy," an accessible all-terrain former garbage truck the family uses for outdoors adventures.) VanderWeele also published (in 2011) Surviving Our Sons One Story at a Time, a collection of parent stories.
Tsang, 30, is an author, blogger, poet, songwriter, and artist who lives in Ajax, Ontario. He has Duchenne muscular dystrophy. His unusual “autobiography” charts “the fantastic adventures of an extraordinary mind, trapped inside an unusual body.”
There’s a lot going on in Ricky’s brain — ruminations that are funny, scathing, romantic, pornographic, insightful, raw, satirical, ironic, outraged and, well … ridiculous. The approximately 150 chapters include numerous idealized odes to women, along with several entry titles that begin “I’m Cursed … ” A passionate romantic trying to come to terms with love (specifically, the lack thereof), Tsang dedicates his wild ramblings to his struggle to hold onto the dream and stay connected to the ultimate beauty that lies within.
Edgy and original, Ridiculous, says Tsang, is for "anyone who believes that freedom can only be attained from within, and a sense of humor is everything." As one commenter to his blog noted, "That was without a doubt one of the cutest most disturbing things that I have ever read."
Ochoa and Hale first encountered each other in junior high, when Ochoa and his friends almost dumped Hale in a trash can to “welcome” him to school. At the time, Ochoa didn’t realize that Hale, who has type 3 spinal muscular atrophy, could never free himself from the can. Luckily, the gang decided to leave Hale alone.
A chance encounter decades later in their hometown of Lindale, Pa., when both men were successful adults, ultimately led to their collaboration on this book, which is part memoir and part description of what it’s like to live with a progressive muscle disease.
Through engaging anecdotes, the book follows Hale from his diagnostic odyssey as a young boy; to school, where friends carried him piggyback to class; into young adulthood and his struggles with deep depression; and ultimately through a successful career as an emergency radio dispatcher.
"When lives hung in the balance," Duane marveled, "someone would dial 911 and ask me — a man who could barely move — for help." Along the way, Duane also fell in love, married and fathered a son.
Sitting at Hale’s bedside working with him on the book, Ochoa observed the physical realities of SMA up close for the first time, and he spends time describing those challenges in detail, like a reporter on the front lines. The authors’ ultimate goal is to “get this story of overcoming challenges into schools, where it can bring perspective and inspire young people.”
In this book about dating with a disability, Jonathan Greeson, founder of the North Carolina Electric Wheelchair Hockey Association (NCEWHA), tells about his relationship with a young woman "who unfortunately is no longer with us." Greeson discusses a variety of dating questions, some "a little PG-13." His goal is to tell his love story and encourage readers to relentlessly pursue their own.
This collection of poems offers an intimate portrait of a young man caught between his romantic dreams and his physical reality.
"Naught's collection possesses such a solid honesty; he has allowed us to tap directly into his mind," said a reviewer from the Raven’s Brew Coffee poetry contest, which awarded second place to one of Naught’s poems. "There is this perfectly composed, yet subtle, juxtaposition of how physical dependency is no match for a clever and confident tongue."
The poet, who has spinal muscular atrophy, hopes his poems will help others find the courage to open to their authentic selves because " … if a personal anxiety riddled over-analyzer can shed public pretense, then what is stopping everyone else?"
The Possibility, Shirley Carson Walker with Maxwell B. Larcen and Garth B. Larcen, 2010, 189 pages hardcover, Donning Company Publishers. Available at positivevibecafe.com, (804) 560-9622.
Family, muscular dystrophy, getting up and giving back are the themes of this biography by capable first-time author Walker, which tells the story of the Larcen family’s experiences due to son Max’s Duchenne muscular dystrophy. The story details the creation, in 2002, of Max’s Positive Vibe Café, a restaurant and food service training program for adults with disabilities that has garnered numerous awards.
Garth Larcen started the program (against all advice) as a way to help son Max get re-engaged in life when he sank into a depression after college. Not only has the Café helped Max find purpose, confidence and a way to express his finely tuned "foodie" instincts, it has brought together the Richmond, Va., community, creating "a work space where everyone fits in."
Max Larcen, 34, was the 2011 MDA Personal Achievement Award recipient for Virginia.
Wisconsin 1 Step at a Time: Taking Steps to Trample Muscular Dystrophy, Bradley Carlson, 2012, 425 pages (hardcover), e-book available. Available at iUniverse.com.
One day, Bradley Carlson — out of work, going through a divorce, struggling with the progression of his Becker muscular dystrophy (BMD) — had an epiphany that he should "walk in every Wisconsin community … find people to walk with me in every place so that they could share the adventure and attest to me being there. There would be pictures and interesting stories gathered along the way." All these experiences would be centered around an effort to raise awareness of BMD.
Those who relish the small things in life — small towns, small pleasures, small steps that add up to a big journey — will find this an enjoyable read.
"Parenting Children with Special Medical Needs: Love and Logic Tools for Raising Resilient Kids" (2011, DVD set approximately three hours long) and Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs, Foster W. Cline, M.D., Lisa C. Greene, Charles Fay, Ph.D., 2007, 343 pages paperback, The Love and Logic Press. Available at parentingchildrenwithhealthissues.com, (800) 338-4065.
The respected parenting program Love and Logic applies its practical parenting tools to the challenge of raising children with chronic illnesses and other special needs. Topics in the DVD set and the paperback overlap, and include: common challenges for raising kids with health issues; parenting styles; empowering children to take care of themselves; helping children learn responsibility; setting limits and dealing with power struggles; and balancing work and family life. In addition, the book addresses sibling issues, marriage and relationship issues, grief and talking with children about life and death.
Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World, Wayne Brown, 2011, 344 pages hardcover. Available at iUniverse.com.
This book presents a series of writings from people affected by acromegaly, a rare, often misdiagnosed, chronic, disabling disease that affects several body systems.
Although based on the writers’ personal experiences, the book’s topics are universal among those with rare conditions: handling pre-diagnosis frustration; dealing with fears of medical treatment and surgery; managing family issues and work issues; talking with children; managing negative energy and more.
Written by an adapted physical education teacher and therapeutic recreation specialist, this illustrated manual emphasizes the importance of creating experiences that increase confidence and self-esteem for participants with limited movement. The book includes more than 450 games, skills and activities for individuals with severe or multiple disabilities (in or out of wheelchairs), and suggests adaptations and modifications to standard games and activities, so that all can participate to the extent of their abilities.