Reading in place

Posted by Allen Rucker in Life After Paralysis on April 20, 2020 # Lifestyle

For those of you who find that doing absolutely nothing – what the Dutch call “niksen” -- in this period of isolation is either anxiety producing or painfully boring, there are alternatives besides washing your hands more than twelve times a day or shaking your fist at God for this horrible global plague. Some are now suggesting that if you are in your 30’s and in good health, just go into a crowd, get the dang virus, get over it with, and then get back to real life. Assuming you don’t pursue this nutty option, you’re stuck at home like the rest of us, no doubt anchored to your favorite chair.

Probably the most rewarding – and edifying – of stationary activities is reading. Especially if you are under forty and your idea of reading are text blasts from friends or endless scrolling on Facebook for something truly enlightening like “How to Pet Your Cat” or the latest Tiny Chef video. Some may find it hard to sit for five minutes sans their iPhone and concentrate on a book, but like everything, it demands practice. You have to train your reading muscle. Start with the back of a cereal box and work up.

Let’s start with three books focused on disability that are must-reads or at least worthy reads for anyone in the disability club. A few days after I became paralyzed twenty-four years ago, many friends showered me with videos to watch and even some great off-beat magazines like “Biker Chick” and “Cheerleading Today” to thumb through, but only one person thought to bring me a book that might have a direct impact on my confused and defeated state of mind. The book was cartoonist/satirist John Callahan’s brilliant, taste-bending “Don’t Worry, He Won’t Get Far on Foot.” The book came out twenty years before the movie and since I didn’t see the movie, I can’t compare the two, but the book was so outrageous in its irreverent take on becoming a quad that it was like electroshock to my brain. As he struggles to overcome not only a devastating car accident that left him a high-C quad but also chronic alcoholism, Mr. Callahan both manages to regain a positive outlook and at the same time be insanely off-color and hysterical.

While recovering at Rancho Los Amigos rehab hospital in Southern California, for instance, he’d amuse himself by drawing cartoons like two bodiless people, heads only, on rolling carts and the head that can see says to the head that is blind: “People like you are a real inspiration to me!” He also jotted down pithy aphorisms that he told in therapy classes. “I suffer from motion sickness: it makes me sick that I can’t move.” Or, “I’m hoping to catch walking pneumonia.”

In the end, using jokes as his moral armor, he concludes, not jokingly. “My life certainly has a black side, but it’s also almost charmed…It’s really satisfying in quite a wonderful way.”

Another book I cherish, completely different in tone and purpose, is Jean-Dominique Bauby’s powerful “The Diving Bell and The Butterfly.” I did see the film version of this book and it was beyond brilliant, astutely directed by artist turned filmmaker, Julian Schnabel. But the book, here as with Callahan, is the thing. Bauby, if you don’t know the true story, suffered a massive stroke at age 43 that left him in the very worst form of physical disability, called “locked in syndrome.” He is completely immobile, head to toe. His thinking is unaffected, but his only physical capability is moving his left eye and in this frozen state, he is able to “write” this memoir, working out a code of communication with the blinking of that eye and a writing assistant.

Both as a poetic testimony to the power of a living, be-here-now spirit as well as an act of pure will, this may be the best book ever written about physical disability. And it’s 133 pages long – even an iPhone addict can get through it with ease.

My third suggestion is not yet a classic in the field but destined to become one, I think. It’s called “Cursed,” by Karol Ruth Silverstein. It is 2019 Young Adult (YA) novel about a 14-year-old girl with an excruciatingly painful condition known as “poly-articular juvenile idiopathic arthritis,” or more simply, crippling arthritis. Every movement is awkward, painful, or impossible. Recently the recipient of the prestigious Schneider Family Book Award, this is a book for any young person with any disability, or adult as well, told in the voice, attitude, and patois of a teenager who has to overcome the snickering and teasing of the meanest age group known to man and try to figure out who she is at the same time.

I don’t have room here to do the book justice, but know that Ricky, the lead character, initially sees herself as “cursed” and curses a blue streak as a way of dealing with her plight. She is a very funny, truth-telling curser who refers to her divorced parents as “Disaster-Formerly-Known-As-My-Parents” and a doctor she hates as “Dr. Blech-stein.” The underlying theme of the whole novel is the almost mystical power of words to define us, which is also the topic of the speech Ricky gives to graduate from the ninth grade. As she is about to get her diploma at the end, she sums up her transformation thusly:

“Two whole minutes pass before I remember to wonder if people are staring at me."

“Two more seconds pass before I decided I don’t care.”

There are many good books out there about living with a disability but these three are unique, powerful, unsentimental, uncompromising, and highly entertaining. I suggest turning off the “this just in” cable news for a while and reading them all.

Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.