Sorting Out ALS at Sea

by ALSN Staff on Fri, 2011-07-01 14:51

'Gib's Odyssey' and other book reviews

Article Highlights:

Books featured in this issue:

Gib’s Odyssey: A Tale of Faith and Hope on the Intercoastal Waterway, Walter G. Bradley, 2011, 213 pages, Lyons Press; available through local and online booksellers ($22.95).

Gib’s Odyssey tells of a single-handed journey from the Florida Keys up the Intercoastal Waterway to New York and back, completed in 2004 by Gib Peters, a 68-year-old financial consultant, newspaper columnist, weekend sailor and person with ALS. Published after his death, it was pieced together from Gib’s emails from sea by his doctor, Walter Bradley, former director of the Kessenich Family MDA/ALS Center, University of Miami School of Medicine.

The details of the seven-month trip are hair-raising. Due to bulbar-onset ALS, Gib could not speak by radio with other boats or the Coast Guard while piloting his 29-foot Wellcraft, the Ka-Ching. As his arm and neck strength waned, he resorted to steering with his feet while leaning back in a chair to keep his head balanced.

“I see it as a challenge to defeat my ALS by inventing ‘workarounds’ and innovations,” he painstakingly typed in one of his lively emails, often written at the end of the day after a jigger of rum had gone down his feeding tube. “Small victories in a war that won’t be won.”

Walter G. Bradley, author of Gib's Odyssey

The emails share insights and stories about close calls, mechanical failures, botched rescue attempts and the antics of Ka-Ching’s two cats, Faith and Hope.

Bradley, who has written nearly 30 books and is lead editor of the textbook Neurology in Clinical Practice, rounds out the book with tidbits of history, geography and seamanship, as well as inside information about ALS based on his many years as a physician and researcher.

Why did he take on this project? “I think it’s something ALS patients ought to know about,” says Bradley. “Gib had the best insights I’ve ever heard about life, death and facing the consequences of ALS.”

Even so, Bradley at first tried to talk Gib out of the trip. “I thought he was mad!” he says, noting he suspected Gib might be experiencing the impaired judgment that sometimes occurs in ALS.

“No sensible person, even able-bodied, would really think that would be an easy trip to do single handedly — a 29-foot boat is not easy to steer around the Intercoastal Waterway. Anyone who had common sense would want to take somebody with them for that.”

Some of Gib’s friends and family also were critical of his decision to go off alone, but after 40 years together, Gib’s wife Marcia knew this voyage was Gib’s way of fighting the disease.

Now semiretired, Bradley says he often used to advise his ALS patients that the disease is not always quickly fatal — and in very rare instances even can “burn itself out — so don’t kill yourself because there’s a possibility this disease won’t kill you!”

Nonetheless, he is supportive of people with ALS who, like Gib, want to follow a crazy — even dangerous — dream. “It all depends on your character and what you want to do with your life.”

 

I Reach Over: Spiritual Correspondences on ALS, Death and Living, Scott B. Shappell, M.D., Ph.D, 2010, 181 pages, Hekasa Books, $21.95. Available through online and local booksellers.

“When ALS patients lose their neuromuscular function, their response is unique; they become all heart and spirit ... ”

So writes noted ALS physician and researcher Stanley Appel in his foreword to this heart- and spirit-filled collection of poetry by fellow physician-scientist Scott Shappell.

Shappell was a 46-year-old prostrate cancer researcher who had recently co-founded a surgical and molecular pathology lab in Dallas when ALS entered his life in 2009. A believer “that everything would be explained by science,” Shappell found that ALS shredded his smug scientific sureness and left him with a “crucial need” to address his spiritual life.

“A common element in Scott’s poems is the collision of science and strong sentiment ... the struggle between science and humanity,” writes friend and Presbyterian minister Katy Rigler in the book’s introduction.

Among the many who rallied to support Shappell following his diagnosis was his older sister, Sally Kilpatrick, who engaged him in a spiritual email correspondence (parts of which are included in the book) that supported and encouraged his seeking. Although grounded in Christianity, Shappell delved deeply into Hinduism and “universal messages from enlightened minds, seeing all religions as equal paths to God.”

Not that this is a book of religious poetry. At times it is downright profane — how else to render in words the reality of ALS? In the poem “Divine Slap in the Face,” Shappell rails against the “Pseudo God of hopeful lives with no real hope ... Who was in charge to let me create this fantasy of a long rewarding life extraordinaire?”

But within the same poem, he responds to himself:

I like your angry spirit but it is time to channel it
To what you should have always realized: you think, you love, you marvel, you’re blessed

Shappell includes 42 poems in the volume — “evolving ideas coming from a possibly derailed mind and a hopefully growingly on-target soul,” he describes them. Poems with names like “I’m Having a Mocha Latte and Driving to Work,” “Interrogation of a Retrovirus,” “Words and Blankets” and “Ouch and Love” are organized into sections that reflect his personal odyssey: Observations and Reflections, Darkness, Relationships, Moving Within and Upward.

The title of the collection is taken from the first poem Shappell crafted following his diagnosis. It is dedicated to his wife, Heidi.

“I love the title … ‘I Reach Over,’” writes Rigler in the introduction. “It is so full of meaning. Reaching implies effort, not a simple leaning but a real effort to acquire something that is not easily attained. The title also holds the implication that there is something more to behold than what is evident in our lives. There is movement in the poems.”

The last stanza of  “I Reach Over” reads:
I wipe my tears. You feed me, very well.
I pray, I search: A permanent solace, a wing.
In darkness, an incense-jaded hope, a green prayer.
In the knowledge of you, in the essence of us, I cry out in all directions.
As I reach over, I add bliss to bliss, love to love, and we move on

 

ALS Yet Healthy and Healed book cover

ALS, Yet Healthy & Healed, Dee Jordan, 2010, 85 pages, $15. Available on Amazon.com.

This short, self-published volume takes a strongly Christian perspective on living with ALS. Author Jordan wrote the book after helping her sister, Garnett Bledsoe Steele, cope with the disease.

Part caregiver guide, part spiritual guide, the book aims to describe the ALS journey and provide daily living advice deeply steeped in Biblical teachings.

 

 

Dancing the ABCs, Kimberly Kim, 2009, 18 pages (board book), $10.95, Lion Tail Publishing. Available at www.liontailpublishing.com.

Author Kim received an ALS diagnosis at age 29, shortly after giving birth to her first child, Luke. As her speech and hands failed, she decided to leave Luke a legacy and also ensure that she was part of his education by writing a rhyming guide to the alphabet. Light-hearted and bouncy, the book is charmingly illustrated by Crystal Ku.

 

Your Ema Loves You, Eloise Lovelace, 2011, 24 pages (paperback), $12.99, AuthorHouse. Available online and through local booksellers.

Author Lovelace, who has ALS, knows that the disease causes physical changes that can confuse and scare young children. Through her gentle story, she seeks to reassure young ones that — although things may seem different on the outside — their beloved grandparent is still the same person on the inside.

 

Patrick and the Giant, David McNelis, 2010, 118 pages (hardcover), Wasteland Press, $25. Available online and through local booksellers.

Patrick, the village storyteller, is called out by a 30-foot-tall giant. Terrified but plucky, Patrick confronts the giant, only to be cursed with a terminal illness. He decides to slay the monster in order to save himself. But it soon becomes clear that this giant won’t go down easily. Patrick refuses to give up, and his quest to conquer the giant holds many twists and turns. Author McNelis, a former New Jersey physician assistant, received an ALS diagnosis in 1996 and died in September 2010. A World Trade Center survivor, he received a civilian commendation award from the NYC Fire Department for his actions during the 1993 WTC bombing. “I am so glad that this [book] has been accomplished for David,” says his wife, Linda. “It was his dream to get the word out there. Perhaps Patrick (and David) could not defeat the Giant in his lifetime, but we may be able to in ours!”

ALSN Staff
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