Books Winter 2010

Article Highlights:
  • Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs, by Jeni Stepanek, is a "mother's book" that provides an insightful glimpse into the short but profound life of her son, a best-selling poet, peace advocate and former MDA national goodwill ambassador.
  • A variety of books are available by writers with neuromuscular diseases
by Quest Staff on December 31, 2009 - 1:01am

QUEST Vol. 17, No. 1

Featured in this issue: Jeni Stepanek's "Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs" ** Fiction and nonfiction by authors: Christoph Keller, Patricia N. Rachal, Robert E. Paulson, Michael P. Murphy, Paul MacLean and R.J. Huddy.

Brave Hearts, Laid Bare

Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs, by Jeni Stepanek, 2009, 336 pages, $25.95, Dutton Penguin Group

“Mattie was never anything but my little boy, and I was never anything but his mom, raising him. We were able to relate beyond that, however, talking all the time and enjoying a free exchange of ideas — and having fun.”

Messenger is a mother’s book, a lovingly detailed examination of the life and death in 2004 of Mattie J.T. Stepanek, best-selling poet, peacemaker, “a philosopher who played,” and MDA National Goodwill Ambassador. It begins and ends with a watershed moment for a woman who already had buried three of her children — the wrenching decision to stop urging her gravely ill son, age 13, to “stay here with me” and allow him to choose to die. 

In between are stories of laughter, friends, fame and many, many struggles — financial, medical, emotional. Stepanek introduces readers to a child who is at once a deeply devout and wise “messenger” of peace and God’s love, and a high-spirited imp with a fart machine who fears pain and yearns for friendships with other children his age.

Sprinkled with snippets from Mattie’s poetry and essays, Messenger traces the evolution of his simple  but profound philosophy — we must consciously choose peace at every moment — and Stepanek’s pride, love and anguish as her one living child slowly but inexorably dies.

Stepanek, who recently earned a Ph.D. in early childhood special education, was a competitive athlete until the effects of adult-onset mitochondrial myopathy set in — a disease she didn’t even know existed before she bore four children affected with the much more serious infantile-onset form.

Jeni and Mattie in 2003: Like many parents and children coping together with muscle disease, the pair shared an especially close bond. “She is planted deep in the earth,” the poet Maya Angelou writes of Jeni in the book’s foreword. “She has given strength to all her children, nurture and admiration to her son, the poet, and now she has given us this book … I commend Jeni Stepanek for daring to live, for daring to give, and above all for daring to love.”

Nowadays, Stepanek, who uses a vent and power chair full time, coordinates Mattie’s legacy. She oversaw the posthumous publication of two more of his books (Just Peace, written with Jimmy Carter, and a final book of poetry, Reflections of a Peacemaker: A Portrait Through Heartsongs). Among other projects, she promotes his poetry for inclusion in school curricula; participates in the We Are Family Foundation “Three Dot Dash” peace initiative for teens; and keeps up Mattie’s Web site, She’s also a volunteer MDA national vice president.

Go ‘forthward’

As an author, Stepanek successfully juggles several balls in Messenger. First, the book is a straightforward story of Mattie’s brief life, from his unexpected and undesired conception, through his final moments. It’s also a deeply honest expression of Stepanek’s grief, denial, loneliness, fear, courage, love and faith. And finally, it’s a vehicle for spreading Mattie’s message of peace, and a description of the path Stepanek watched him follow as that message matured.

For average readers, Messenger offers an uplifting and inspirational story (despite its heavy subject matter), anecdotes about some famous people (Oprah, Larry King, Jimmy Carter) and a peek inside the intensely focused, hospital-heavy world of medical disability. 

But for readers affected by chronic disease, disability or acute awareness of  the shortness of life, Messenger goes one layer deeper, touching a universal experience that both destroys and sanctifies. At the end, despite the tears, there is strength and — remarkably — hope.

The miracle of Mattie is how much he lived while dying. In his final days, nearly fully paralyzed and in great pain, he strained to find the breath to tell Stepanek, “Mom, do not lie down in the ashes of my life. Take my message forthward. Make it part of your own message. I’ll live through the message. I will be with you.”

In Messenger, Stepanek — ever loving and supportive — carries out this final wish to perfection.

The Best Dancer, by Christoph Keller (translated by Alison Gallup), 2009, 288 pages, $16.95, Ooligan Press.

Christoph Keller was 14 and living in Switzerland when he received his diagnosis of spinal muscular atrophy. Keller earned a master’s degree in arts and moved to the United States, overcoming the confines of his illness, an alcoholic father, and a country where accessibility and ADA guidelines were truly foreign concepts. The Best Dancer (an allusion to dance as a metaphorical display of joy) is part memoir and part fictional novel. Touching and humorous, Keller is best when he’s displaying his wit, such as when he explains how he chose which languages to study in college based on how many stairs he would have to navigate in his wheelchair.


The Light in the Valley: A Story of Faith and Courage, by Patricia N. Rachal (as told to her by Mary Boyter), 2005, 58 pages, contact for pricing, NewCreationInspirationS,

Mary Boyter, of Louisiana, received an ALS diagnosis (amyotrophic lateral sclerosis) in 1994 and given one year to live. Seventeen years later, she has defied the odds. Devoutly Christian, The Light in the Valley tells how faith has helped Boyter cope with ALS.


Not in Kansas Anymore: a Memoir of the Farm, New York City and Life with ALS, by Robert E. Paulson, 2008, 254 pages, $19.95, Gemma B. Publishing,

More than just an autobiography, Bob Paulson’s book is the story of how a young farm boy raised in 1940s rural Kansas became one of the state’s first nuclear engineering students and advanced through a 40-year career as a patent attorney in New York City. Forced into retirement by ALS in 2003, Paulson wrote his memoirs using his eyes via computer technology.


Of God’s Country, by Sven Janssen, 2007, 195 pages, $20.94, One Fierce Flower Studios,

Under the pseudonym Sven Janssen, author Fleur Jacobs has penned the fictional tale of a tattoo artist coming to terms with her sudden diagnosis of myotonic muscular dystrophy. Unsure how long she can continue her work, Bel Ericksen returns to her family ranch in Alberta. There she must confront not only her disease but the past she fled so many years before.


Suka: a Paul Murdock Novel, by Michael P. Murphy, 2009, 356 pages, $11.60, AuthorHouse.

Suka is the second installment in the Paul Murdock thriller series by frequent Quest contributor Michael P. Murphy, who has spinal muscular atrophy. Private investigator Murdock, who was paralyzed in the Vietnam War, is hired to find a runaway teen. His investigation leads him to post-Soviet Moscow and the doorstep of the Russian mob. Once there, he receives aid from the unlikeliest of sources — a former Russian crime boss, long suspected to be dead and now a wanted man. Fortunately for Murdock, or perhaps not, a beautiful but lethal ex-cop also shows up to assist in the search.


Trona to Austin: How Life Snuck Up on Me, by Paul MacLean, 2008, 425 pages, $20.95, Infinity Publishing,, (877) 289-2665.

Paul MacLean grew up “a clumsy kid” and less-than-stellar athlete. Still, for 26 years he competed regularly in triathlons and foot races until — at the age of 65 — he received a diagnosis of Charcot-Marie-Tooth disease. Unfazed, he continues to walk and jog daily. MacLean doesn’t spend too much time reflecting on his life with CMT, instead opting to give readers a full autobiography. It’s a sometimes tender, occasionally poignant and frequently humorous tale.


The Verse of the Sword, by R.J. Huddy, 2009, 456 pages, $17.50, XPat Fiction,, (800) 322-2665. The book can be previewed or read in
its entirely for free online, at

Part love story, part adventure yarn and part travelogue, this first novel takes readers from the coast off Cape Cod to North Africa, in a story that touches on religious warfare, political revolution and the intricacies of identity. Huddy, a Kentuckian who has lived and worked in Africa, Asia, Europe and the Middle East, has Charcot-Marie-Tooth disease.

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