Looking for a book about what it's like to be paralyzed from the waist down in a wheelchair.

May 25, 2011 3:57 PM

I'm looking for a book that will give me a full and complete sense (down to the nitty-gritty) of what it's like to be paralyzed from the waist down and to live life in a wheelchair. I've looked at some very clinical manuals that do explain things, but the wording is very dry. I'm looking for an account that is more personal. I'm hoping some of you could suggest some good ones you have read.
posted by Sully to human relations (15 answers total)

Gary Presley's Seven Wheelchairs: A Life Beyond Polio.
posted by ThePinkSuperhero at 3:59 PM on May 25, 2011 [3 favorites]

(Found the book through Mr. Presley's NYT Modern Love piece).
posted by ThePinkSuperhero at 3:59 PM on May 25, 2011 [1 favorite]

Definitely John Hockenberry's Moving Violations. Hockenberry is a reporter for NPR (currently WNYC) and did amazing shit like travel with the Kurd refugees after Gulf War I.

You can also memail me with any specific questions you have (trusting this isn't some fetish thing). I've been partially paralyzed from L1 level since 2002.
posted by angrycat at 4:03 PM on May 25, 2011 [3 favorites]

You might find the blogs

Rolling Around In My Head

and Wheelchair Dancer interesting.
posted by Year of meteors at 4:05 PM on May 25, 2011

From There to Here: Stories of Adjustment to Spinal Cord Injury. This is a collection of essays by multiple authors, but it might be a good place to start.
posted by fairfax at 4:27 PM on May 25, 2011 [1 favorite]

He was a quadriplegic, which might be more than you're looking for, but I found John Callahan's Don't Worry, He Won't Get Far on Foot to be educational and funny when I read it years ago. (I hadn't read much about disabilities then, and I can't remember enough to know if I would still like it.)
posted by The corpse in the library at 4:30 PM on May 25, 2011 [3 favorites]

There was an interesting thread on Reddit started by a guy who is married to a woman with spina bifida who is wheelchair-bound just a couple days ago. It may not be precisely what you're looking for, since it's from his point of view and his wife may have slightly more function than a paraplegic, but he shared a lot of personal thoughts about their relationship. Here it is.
posted by Kutsuwamushi at 4:33 PM on May 25, 2011 [1 favorite]

The work of Paul Guest. (Woo, Atlanta poets! although I see now he's moving to UVA in the fall, noooooo) Memoir here. From poetry, "Travel":

. . .and I will help you lose my two hundred pound wheelchair somewhere in Toronto. I will laugh like a marrow-fat hyena when you call it my chariot. When you mention Stephen Hawking. Or Christopher Reeve. Because you are the first, the only, the original, the initiator, the big dog, the supreme wit. I will nod serenely. I will identify with your sister in a wheelchair. Or your cousin. Or your pet whimpering at home. Yes, lupus is sad. I will never not be sad. Just for you. I'll be happy when you say. When you dispense Jesus to me like candy, I will shout amen. I will let Him melt in my mouth but not in my hand. I am shouting amen right now. I am melting. If you can't hear me, then deafness too is sad. Let's be sad awhile.

posted by nicebookrack at 4:50 PM on May 25, 2011 [1 favorite]

Nthing the Hockenberry book. I love it. He discussed it on C-SPAN a number of years ago; maybe the show would be in their archives.
posted by jgirl at 4:51 PM on May 25, 2011

Born on the Fourth of July
posted by mareli at 7:16 PM on May 25, 2011

Gimp
posted by bananafish at 9:52 PM on May 25, 2011

I remember reading 'Still Me' (still himself, also, his body without motion) years ago and finding it a beautiful and moving set of writing, and like Reeve himself describes, my own perceptions on the idea of a "hero" were definitely altered. A deeply touched theme is the idea of how he was forced to reconcile a 'new reality' with how his mind was sharp as ever... it addresses complexities such as "feeling like a different person, but being the same inside, how external challenges can impact internal perceptions... the expectations of others, his perseverance and strength really moved me, as do the roles his family played in returning him to life, he talks about the 'feedback cycle' of potential, limitations, changes and challenges - the power of dreams. It is broad ranging, and if all you know of him are the modern pop culture things that treated him really poorly, or even if you just know of his advocacy for Stem Cell research, this is not that, this is a personal journey of rediscovery fleshed out; finding himself in essentially a 'new' body, with drastically altered autonomy... and the journey from moments after his accident to several years after, his progress, his difficulties, but most importantly, his internal journey, and his insights (which do not come cheaply, or in the form of platitudes), he is able to say he is "still me", still himself, you might find this story to be really refreshing, and to give interesting perspective - it is not an ode to celebrity, or to raising his own banner. It is a very personal description of paralysis, capturing not only feelings and hopes, but nightmares and struggles, and shared with the reader as if a journal or mailed letter.
I apologize, this suggestion is slightly off from your request, if I remember correctly, Mr. Reeve suffered a C2 break, also it is not a medical text, or full of bio-mechanical information, it is primarily about the reconciling and connecting of his altered physicality and the conceptual body of his mind (only more concrete than what that reads like... and better written than my weak description).
posted by infinite intimation at 10:15 PM on May 25, 2011

Bad cripple is a blog written by an academic who is also paralyzed. He focuses heavily on the civil rights aspects of disability. Rolling around in my head is a great blog but he's not paralyzed, uses a wheelchair for other reasons. Very worth the read though!
posted by leslies at 5:34 AM on May 26, 2011

The Diving Bell and The Butterfly
posted by iiniisfree at 9:25 AM on May 26, 2011

You may want to read Allen Rucker's memoir describing his experiences with transverse myelitis, The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life.
posted by lrrosa at 1:15 PM on May 26, 2011 [1 favorite]