Wheelchairs
A Life Beyond Polio
Gary Presley
(University of Iowa Press)
He needed (and still needs) a breathing apparatus, especially at night. He has barely the use of his two arms. Now, well into his sixties, he is married to a caring woman by the name of Belinda.
During his first days in the hospital, Presley refused to coöperate with the doctors and nurses and orderlies. He was a teenager, thus by definition, angry. With his infection and paralysis, he was doubly angry ... but the staff were not about to countenance his destructive attitude. They left him alone in his iron lung, even stopped turning him. By the time he got to rehabilitation at Creighton he had five pressure sores that came about, he admits, because of his rage.
Until his mother and father died, in 1988, and even after the arrival of his first electric wheelchair, he was still dependent on the family to care for him and get him about. His father drove him on various errands and to work. His mother dressed him, fed him, "right down to cleaning my bottom after a bowel movement ... as she had done when I was two or three years old."
Presley's first bout of depression came early on after his return to the family. "Office hours over, I left the insurance agency, went home, sat alone in a darkened room, and looked at nothing. I did not read. I did not listen to music ... I sat, letting the bleakness that I camouflaged in the presence of friends and strangers blank out the light."
7 Wheelchairs is his story, one that starts in 1959, the time of his infection (via improperly prepared Salk Vaccine) until now. It includes his conversion to Catholicism, the arrival of post-polio syndrome, and what he believes to be his acceptance of his fate as "a crip" in a wheelchair.
It's a tell-all, and I should let you know right off that I am not too sure about the efficacy of such writings, this let-me-tell-you-every detail in a disabled life. I am not convinced that all those walkies out there want to know about the contortions that some of us go through to take a simple pee, for God's sake. For readers of the disability magazine New Mobility, these details may resonate, but the rest of the world out there probably doesn't much care about the reality of bladders or bowels. Nor, I am thinking --- and let's be humanitarian here --- should we be in such a hurry to let them know, so graphically, what will befall them as they sicken, age and begin to die.
Given all this, let me hasten to say that Presley is not an ungifted writer. A bit wordy perhaps --- the book started off as a blog, and suffers from the endemic logorrhea typical of blogs --- but he is artful at conveying the claustrophobia of thirty years trapped in the depths of his family ... learning, as all do, that no matter how much we want to be independent, our families come to be deeply dependent on us and our personal traumas, even --- dare I say it? --- dependent on our incapacities.
Our families suffer from their own feelings of helplessness with this new hobgoblin we bring back with us from the hospital or rehab facility. Siblings will be neglected, sometimes isolated. Mother will be protective, father may get more pissed than he should (towards the end there, Presley's did ... with a vengeance). All will be scarred.
In consequence, many family members cannot help but resent what is after all a drama written by the gods and directed --- however well or poorly --- by those of us who come back to live in the nest in whatever new form they have given us.
Presley's personal drama seems to be filled with more than the usual testiness. He dislikes every glance in the street. To the world he writes, "I am Gimp, a burnt-out case, and I must admit I am not interested in how you perceive me, how my broken carcass inspires your emotions."
The words he uses for and about himself are, at least for this reader, unduly harsh: "maimed and mangled," "a twisted brother," "this hulk" "an almost man," "a leper" with "all the warped qualities of my wheelchair personality." He refers to "my soul where the rage shark swims," the "boy's ghost in a man's body."
- Nasty fellow, this ghost of Gary past. I know. I lived with him for twenty or thirty years, listening to him whine.
All this implies a lack of love for himself and for others around us. If I can't love me, who is going to love me? goes the old wheeze. Even after Presley finds a woman to care for him, he manages to imply something tainted: "The world spins out of control anyway ... Blinded by loneliness and aching with desire, I used her need to fill my need, pulling her into my orbit with the passion I felt for her."
The surprise for this reader is that there is so little self-love in Seven Wheelchairs, despite the fact that Presley is, after all, still going on, and --- apparently --- going on strongly at the end of his sixth decade. By surviving depression, loss of faith in body, years of loneliness in the isolated world of small-town Missouri, and despite his self-denigrating words, something of a miracle has occurred.