My Life with Cerebral Palsy
When it was time to get born, Fran Macilvey wanted nothing at all to do with it. Since she was #2 --- she had sent her sister Martha out ahead of her --- she didn't like it, and anyway, the doctors and nurses thought there were no more babies in the oven. Only Mum knew something strange was going on. Estelle said this repeatedly but the doctor, probably drunk (this was in the Belgian Congo back in the early 1960s when everyone was getting out of town ... and it was New Year's) --- said no and the nurses said no and they were about to pack everything up, but there Beth was, tucked away,
Wrapped in my knots of sorrow and fury I was a crumpled, ugly bundle. My head was bloated, my limbs somehow tacked on; yards of cord pulled around my neck cutting off air, slicing my body --- and strength --- in two. I was trapped.
When they finally did get her unplugged, she was what in those days they called a 'blue baby.' Certain key areas of her body had been deprived of oxygen. "Cerebral palsy or paralysis is caused by a lack of oxygen to the brain, usually because of suffocation at birth. Starved of oxygen, parts of the brain are damaged: in my case, those parts that have to do with coördination, balance, and the movement of the limbs."
The outcome shows in differing degrees of spasticity, that is, tightness or loss of movement. "Spastic" is bandied about as an insult, but all it means is that certain muscles hold themselves in a spasm, while others are dead or have wasted away from lack of air or usage.
Fran's case wasn't helped by doctors who decided when she was still young that she would be made better with operations, but they either didn't help with her coördination or they actively increased the pain that she was to carry with her for the rest of her life.
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Macilvey is a hell of a good writer, and this, plus her good sense, manage to keep Trapped from getting trapped in the twin crevasses that haunt most agony-lit. One is self-pity, you can't imagine how much I've suffered but I am going to tell you anyway. The other is mushy sentimentality. We come early on relish her clear and direct writing, her even-handed coolness.
Growing up disabled in a non-disabled world is no bed of roses, and most people around you --- even in your own family --- haven't a clue to the boobytraps waiting there on all sides to turn one into either Super-Crip --- heroic-beyond-all-means --- or on the other hand, an object of pity. Like most of us who are disabled, Macilvey had to plot her course alone, and alone she came up with many of the same tools the rest of us use to evade the pitfalls and tarpits.
And there are some lessons that few Walkies will experience, at least until they finally stick you in Happy Acres Nursing Home. In hospital, Fran learned the same sorry lesson so many of her peers learned: that in these places there are those who take care of us who are kindly, gentle; and there are some monsters. After a particular painful operation, she learned that "Endless petty cruelties were meted out to children at the mercy of a system that looked no further than the next procedure. And, though I met many angel nurses, I also encountered my share of sadistic bitches, one of whom --- she just happened to be the ward matron --- decided one day that it was 'time those stitches came out.'"
She prepared with gleeful precision, pulling the curtain around my bed so that no one else could see how much she was going to enjoy this. ... Telling me to turn over on to my front, she stripped me and then pulled every stained piece of thread out one inch at a time. She scolded me as long spasms of pain convulsed my body and tears poured over my face. As instructed, I bit hard into the pillow while my bottom wept blood beneath her scissors. I sobbed and tried to stifle my screams and all the time, I knew: if it hurt so much it was too soon.
Any of us who stayed long term in a hospital or nursing home have run into these creeps. But I have to tell you they don't look like someone just over on the boat from Transylvania. They sport no fangs, wear no chains nor whips. They're just normal-looking people who have normal-looking faces and normal-seeming personalities. But once they get you in their power, their uncanny ability to humiliate beggars all description.
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Fran has another cross to bear. She likes walking. And she has tons of problems with it. When she walks, what with the CP and the various misguided operations they have inflicted on her, she falls. From the upright vertical position to sprawled down there on the ground, glasses askew, whatever she is holding in her hands splayed all over. "When someone kind comes to help me, I believe in being as nice to them as possible," she writes. "That can be a real challenge when I am sore, dirty, bleeding, embarrassed, and worried about my wrists."
I have fallen hard on concrete perhaps fourteen thousand times. So if you ever pick me up off the ground, please try to understand that any crossness that escapes from my well-controlled exterior, any apparent bad nature you may glimpse, has nothing whatsoever to do with you and everything to do with how I have to get by in life.
From the moment she was born Fran proved that she had a stubborn streak. In the early part of her life, this was not much use: just got her family miffed (why does she have to be so damned obstreperous?) But later in life, it stood her in good stead. Like when she was fourteen.
She was just getting used to this falling down business, but it made her father, a proper type, nervous. How can you have any dignity when you are down there with the dogs and rats? He decided she needed a wheelchair.
Wait: no matter the cost, she just liked walking. But Dad decided she needed a wheelchair whether she wanted it or not. Which you and I know by the time we get this far in the book ... well, we know that a wheelchair is just what Fran doesn't need. For a wheelchair feeds on itself. Once you are in it, muscles that you are using to get around begin to fade, strength begins to leech out of the body. Her instincts told her no, and soon it was her against him ... then against the world.
They didn't like the funny way she had of lurching around. "He insisted that my refusal to even think of using one was stupid, pubescent disobedience. For weeks, during one holiday in particular, I felt the full frown of his impatience when I flatly refused to consider any new confinement, even one with wheels." He even came up with this appalling thought: "It will be more relaxing --- it will be fun for you."
Fran was only fourteen, but she had no desire to give up what she had. His thoughts were "that I would enjoy the freedom to move more quickly, in straight, solid, respectable lines. I would not look too out of place in a social gathering; I would just be shorter than everyone else, so there would be lots of stooping and looking down at me. He simply did not realize that I enjoyed walking." She loved her small freedom and it was her choice to move herself by herself.
"Assistance," she writes, "in the form of a hand up, an arm to lean on, or a wheelchair, is only ever welcome when it is chosen."
It made me bristle that he expected me to play pathetic when what I most desired was to fall and learn the power of getting myself up again to have another go. The next time I might get it right. The challenge was what I most enjoyed.
§ § §
Trapped is a deliciously understated book of the world of disability, especially when Fran, who we come to treasure, lets us in on some of her secrets. She brings up the always tricky question of what she calls "Sex for Spastics." And she tells us (in confidence) that she loves loves loving herself.
Trapped should be on the reading list of all those dumb courses they give in college now, the ones called 'disability studies.' The small victories that Macilvey and the rest of us have wrested from the world of the temporarily-abled are secrets that everyone might as well know because someday, dear reader, you will be over here with us too. Or rather: down here on the ground, with the paper bag torn up, the bottle of ketchup broken, the meat splayed out of its package and the broken jar of apple sauce leaking out into the mud.
The final irony is that the title of the book is best understood when it gets turned on its head. For if Beth was "trapped," it was only from being so isolated for so long from the rest of us disheveled band of lopers and lopsided movers and draggers and humpers and bumpers and staggerers --- those of us who should have been there all along at her side to coax her along. But, like her, we like keeping our own counsel. We like keeping things under our hats because we are all fiercely independent. Like her.
As she says, the world thinks that our bodies are "public property." Yeah, well hardly. And only if and when we care to offer it to them. And then only with our own particular and special seal of approval.--- L. Milam