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The Paralysis Biography: Coping and Carrying on

By Sheila Fitzgibbon
PRC Library Director

The Paralysis Resource Center library, hosted at the Reeve Foundation headquarters in Short Hills, NJ, comprises the largest collection in the world devoted to the topic of paralysis. There are thousands of books, periodicals, videos and other materials in the library covering medical issues, caregiving, assistive technology, sports, travel, and much more.

An entire section in the library includes autobiographies and biographies from people living with paralysis – there are 148 titles just from people with spinal cord injury.

These biographies are full of wisdom from those living with the daily struggles of paralysis. The message often heard in these books is that paralysis is overwhelming at first but eventually one can adjust and make peace with paralysis. Many of these books are self-published (meaning the author has to pay to have it printed – instead of being paid to write it). Clearly the authors want to spread their story, to help others who are going through the same tribulations and share some of the tips learned to try to inspire others in the same predicament.
Never Give Up! How Tragedy Taught Me That Life Is an Attitude
Never Give Up! How Tragedy Taught Me That Life Is an Attitude
Major theme: On with life
Getting on with life is often the major theme: paralysis may slow one down, but people tell us how they go on to get a college degree, marry, have children, get a job, set a world record for something.

The exception is in one of the types of paralysis – ALS (amyotrophic lateral sclerosis or Lou Gehrig's disease). In these biographies people are typically settled in life as a gradual loss of function starts to rob them of speech and movement. The ALS biographies are often poignant; we see how impending death can be handled gracefully. There comes a point in all of the ALS biographies when the person must make some decisions – when to start using a speech communication device, whether or not to go on a ventilator, how to prepare to say goodbye to family. His Brother's Keeper, by Jonathan Weiner, covers the story of a man diagnosed with ALS and a family that goes so far as to start their own foundation for medical research.

A common theme in several paralysis biographies is faith in religion. For some, religion emerges after the onset of paralysis; it helps them get through the tough times. Joni: An Unforgettable Story, by Joni Eareckson Tada, embodies the theme of a person strong in Christian faith who draws upon that to help her deal with paralysis. Tada, a quadriplegic, founded the Joni and Friends ministry to help others in the disability community find faith.

Some biographies are all about attitude. Never Give Up! How Tragedy Taught Me that Life is an Attitude, by Ron Heagy, tells the story of a motivational speaker who became a quadriplegic at 17. Ron credits his success in dealing with paralysis to having a can-do attitude.

For others, a sense of humor is the key to dealing with paralysis. John Callahan's Don't Worry He Won't Get Far on Foot is the classic book of disability humor. Callahan is a successful cartoonist and quadriplegic. His paralysis is accepted as just one of the things that makes his life tough—alcoholism being another. His cartoons are known for their irreverent take on life.
Roll Models, People Who Live Successfully Following Spinal Cord Injury And How They Do It
Roll Models, People Who Live Successfully Following Spinal Cord Injury And How They Do It

Coping with a life with spinal cord injury is another common theme. Gary Karp and Stanley Klein's book From There to Here: Stories of Adjustment to Spinal Cord Injury profiles individuals making the adjustment to living a successful life with paralysis. Roll Models: People Who Live Successfully Following Spinal Cord Injury and How They Do It, by Richard Holicky, is just what the title suggests: an inside look at how many different people deal with disability.

Perhaps the most unique title is Quadalajara: The Utopia That Once Was, by Jack Tumidajski. It about a group of Americans who relocate to Guadalajara, Mexico, and live in close proximity to each other. They learned about this utopia through ads in the Paralyzed Veterans of America magazine and met each other by way of PVA's Mexican chapter.

Unique for another reason -- it is one of only two biographies on transverse myelitis – is The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life, by Allen Rucker. A Hollywood writer before his paralysis, Rucker offers an honest, moving, and funny look at life with a rare disease.

One of the most common title words in this genre is "miracle." Miracles Happen, by Brooke Ellison; Miracle Man, by Morris Goodman; and Praying for a Miracle, by Gilda T. D'Agostino, fall into this category. There is a sense from many of these biographies that the life interruptions caused by paralysis must be overcome through struggle, prayer, family help, and perseverance.

In the end, the real miracle is that those facing the numerous health, social and financial problems related to paralysis are so often able to adjust, cope and carry on with new dreams, new ways of doing things, and new ways to deal with everyday life.


From Best Seat in the House:

The Best Seat in the House, How I woke up one tuesday and was paralyzed for life
The Best Seat in the House, How I woke up one tuesday and was paralyzed for life

Finally, someone sits down who knows no one at the party, including you. This person invariably loves to talk about chronic illness, the Canadian health care system, the restorative power of prayer, or all three. He or she figures that you, in your impaired condition, know about all these topics and will love to trade "war stories." Soon you're either diagnosing your friend's mother's pesky diverticulitis or fending off signing up for their Prayer-A-Day phone service. There is no way that you can gracefully slide away on spotting "my very oldest friend" coming in the door. Graceful exits and wheelchairs don't mix. You're stuck, dude. Either you join in the discussion of the diseases of man or you feign narcolepsy and nod off, which is extremely rude and rarely convincing.

– Allen Rucker

From Don't Worry:

Don't Worry, He Won't Get Far On Foot
Don't Worry, He Won't Get Far On Foot

How many times has this happened to you: You're in a public toilet with a quadriplegic. Suddenly he turns to you and says, "Say, my hands are a little numb. Would you mind catheterizing me?" If you feel at a loss in this situation, you're not alone. In the years since my accident I've had plenty of opportunity to study the way the able-bodied people ­behave around the maimed. Few display any savoir faire.

Often I've found myself in a slow elevator with a crowd of people who first stare and then look away. I try to break the ice with a pleasant remark, such as, "Damn, I knew I should have crawled up the stairs!" Suddenly everyone seems to take vivid interest in fake oak paneling.

– John Callahan

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Continue Christopher Reeve's LegacyPhoto by Timothy Greenfield-Sanders