The Wheelchair Evaluation: A Clinician's Guide, Second Edition

In 1959, seventeen-year-old Gary Presley was standing in line, wearing his favorite cowboy boots and waiting for his final inoculation of Salk vaccine. Seven days later, a bad headache caused him to skip basketball practice, tell his dad that he was too ill to feed the calves, and walk from barn to bed with shaky, dizzying steps. He never walked again. By the next day, burning with the fever of polio, he was fastened into the claustrophobic cocoon of the iron lung that would be his home for the next three months. Set among the hardscrabble world of the Missouri Ozarks, sizzling with sarcasm and acerbic wit, his memoir tells the story of his journey from the iron lung to life in a wheelchair. Presley is no wheelchair hero, no inspiring figure preaching patience and gratitude. An army brat turned farm kid, newly arrived in a conservative rural community, he was immobilized before he could take the next step toward adulthood. Prevented, literally, from taking that next step, he became cranky and crabby, anxious and alienated, a rolling responsibility crippled not just by polio but by anger and depression, “a crip all over, starting with the brain.” Slowly, however, despite the limitations of navigating in a world before the Americans with Disabilities Act, he builds an independent life. Now, almost fifty years later, having worn out wheelchair after wheelchair, survived post-polio syndrome, and married the woman of his dreams, Gary has redefined himself as Gimp, more ready to act out than to speak up, ironic, perceptive, still cranky and intolerant but more accepting, more able to find joy in his family and his newfound religion. Despite the fact that he detests pity, can spot condescension from miles away, and refuses to play the role of noble victim, he writes in a way that elicits sympathy and understanding and laughter. By giving his readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable.

The UNROMANTIC truth about life in a wheelchair

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"I have worn out seven wheelchairs in forty-plus years. More accurately, I've worn out six, and I have been worn out by one. None of them were equipped with odometers. I can't tell you the number of miles I've ridden. I can only say it's been a long, strange journey."

The above is found in this honest and revealing book by Gary Presley (born: 1942) who contracted polio when he was seventeen years old.

(Polio or more correctly, Poliomyelitis is an acute viral infection spread from person to person, primarily via the fecal-oral route. From the Greek "polios" meaning "grey," "myelos" referring to the spinal cord, and the suffix "itis" which signifies inflammation.)

I thought when I first picked up this book that Presley had contracted polio (that left him paralysed and crippled) from infection through personal contact. I was surprised to learn that he actually got it through a vaccination (what he calls "a failed inoculation") that was supposed to protect against polio!! (I first learned that people could get certain diseases through vaccination many years ago when I read the superb book "Confessions of a Medical Heretic" by Dr. Robert Mendelsohn.)

Presley, surprisingly, does not complain about contracting the disease in this manner. (At that time, there was no money compensation for acquiring a disease in this way.)

The book is about how he coped with this terrible disease, gradually building an independent life and showing "that a life disabled is a life worth living, worth celebrating."

In this memoir, Presley shares with us such things as how his disease affected his parents, his months in an "iron lung" (used to artificially maintain respiration or breathing), his descriptions of other patients as well as descriptions of caregivers, his anger (rage really), depression, and alienation, his thoughts on suicide, employment, post-polio syndrome (symptoms are fatigue and muscle pain), prejudice and stereotypes, marriage, and finding religion.

Presley also passes onto the reader the wisdom that he has acquired. As a physically-disabled person, this wisdom had special significance to me. Note that you don't have to be disabled to appreciate Presley's wisdom.

Finally, I was surprised by the quality of the writing. In a word, it's exquisite & brutally honest and at points, even humorous.

In conclusion, in this unique memoir, polio victim Gary Presley gradually redefines himself as a "Crip" and "Gimp," effectively showing that there is indeed "a life beyond polio." In Presley's own words:

"I find joy in being alive, in words and music, in the taste of raw spinach with a touch of olive oil and balsamic vinegar, in the scent of flowers, in the flicker of film on screen, in the ideas leaping from book pages, in the playfulness and devotion of my dogs, and in the fragrance of my woman."

(first published 2008; acknowledgements; 30 chapters; main narrative 225 pages)

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Unique, timely, and absorbing

Typical narratives about disability tend to go a little something like this: person is faced with a physical challenge, and with a supportive family, a lot of pluck, and a can-do attitude, learns not only to live but to flourish under their circumstances. Gary Presley offers a different sort of story-- and one that is probably far more typical in reality than the former kind. Stricken with polio as a teenager, he finds himself overwhelmed by the mental as well as the physical effects of the disease: the sense of helplessness, the struggle to see a bright and reasonably independent future for himself, the need to reconcile his former ideas of "Gary" with the Gary of the here-and-now. Although the memoir has been cited as being overly self-critical, that self-criticism is one of the book's most significant insights-- that those living with disabilities can struggle with the ways in which they restrict the lives of those who help them, and that it is not easy for a man to acknowledge a degree of helplessness, even if it comes by no fault of his own. This candid look into the mind of a quadriplegic should be a must-read for anyone working with the disabled. Some might come easily to that "can-do" mindset, but Presley takes us on the journey from an outlook of dependency to one not only of liberation, but of activism.

The historical aspects of Presley's book are fascinating as well. His in-depth description of polio hospitalization in the 1960s, with iron lungs and specially-made beds, paints a picture of an era lost to us now but at one point embedded deeply in the consciousness of medicine and parenting. It is particularly relevant to the vaccine debates today, causing the reader to consider both the dangers inherent in vaccination as well as the realities of the now-forgotten diseases they are meant to prevent. An excellent memoir filled with unexpected hope and genuine insight.

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Brutally honest, compellingly readable

This compellingly-written memoir covers Gary Presley's inspirational life story - a life which was altered forever after he was paralysed by polio while in his teens.

I'm used to breezing through books in a day or two, turning the pages fast and skimming the parts that seem to drag on a bit. I found, with this book, I couldn't apply my usual reading style. I was compelled to follow Presley's story through every fascinating word.

In some parts, the narrative touched on subjects so intense that they were painful to read, and I had to put the book down for a while, simply to absorb the bleak reality of life confined to a wheelchair. However, in spite of this, it's not a sad story. It is laced with wit and humour, spiced with Presley's wry insights into his world, and it has an amazingly happy and satisfying ending. I ended it feeling positive and full of admiration for this talented writer who has truly lived an extraordinary life.

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Can a Paraplegic Person Creat a Good Life?

Seven Wheelchairs: Life beyond Polio by Gary Presley

Can a quadriplegic person create a good life?

At seventeen, Gary Presley, a basketball-playing, helping-dad-with-the-farming high school junior, was struck with polio. For several years he felt in ways he has since regretted: he wasted his energy on anger and self-pity. His life began anew when he accepted that he would, as a quadriplegic, ride through life "on his fanny." He would not be "wheelchair bound", but rather, he would be freed by his wheelchairs, his coherent thinking, and his tenacity for life.

Presley frankly tells the reader details of the physical support he has required every day of his life. After his parents, who had been devoted to his care, died within thirteen months of each other, he was essentially left to fend for himself. For physical support, he had his portable respirator and hired attendants who arrived at his home for a couple of hours each morning and evening to help him into his wheelchair, among other things. While lying on his back in bed, he was incapable of even moving his legs. Yet he decided, against all advice from family and friends to the contrary, to live independently.

It is not that he was unafraid. Instead, Presley chose to face his fear of spending nights alone - what if the respirator breaks down, what if I wake up to a fire, what if ... But he refused to allow his fears to restrict him, and lives, as the book title suggests, a better life. It's a life in which he experiences joy and even bliss.

This richly informative book is a must read for all people with physical disabilities and their caregivers. I highly recommend Seven Wheelchairs: Life beyond Polio to the general public, and especially to those who allow fear to limit their living. Presley's riveting memoir so clearly depicts the author himself and some family members that, having finished the book, I feel as if I had met them in person.

The writing flows effortlessly as Presley shares brutally honest self-assessments and details sensory descriptions which are sometimes humorous, sometimes poignant. There are many apt metaphors and sections which are pure poetry to be savored and reread. It is, overall, a gratifying reading experience.

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Seven Wheelchairs: A Life Beyond Polio

More than a book about one man's ability to cope with the disabling effects of polio, this is a human story about a person's journey through life, remaking and redefining himself along the way. It's not an easy journey--we watch Gary grow from a helpless toddler of seventeen, dependent, petulant and whiney, to a man, full of humor, love and life. His account of falling in love and, more, accepting love is nothing less than beautiful.

This is a remarkably honest account of a life.

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