I've just seen just seen the trailer for the family movie, Wonder, based on the children's book of that name, about a boy with facial disfigurement due to a birth defect. Well, thirty-five years ago I met someone just like that.
It was 1982, and I was about to embark on a 6½ month journey through North and South America commencing, ironically enough, with a bus journey southwards from my home city of Brisbane. On such trips my custom was to chat to whomever fate had placed in the seat next to me, for travellers tend to have interesting life stories to relate. This time I found myself next to a young lady who was nothing to look at on the outside. She wore a pair of thick glasses, her face was misshapen, and her nose was just a shapeless lump, but shyness and diffidence did not come with the features. I shan't repeat her name, although she probably wouldn't mind, but she informed me that she was almost nineteen, and was returning home after receiving her twenty-first operation to repair her face.
At this my ears pricked up. Although I don't remember it, my diary records that her speech was peculiar - now doubt as a result of the deformity of her palate. Without any hesitation, she told me she had been born with a cleft palate which extended right up to the base of her cranium, leaving her nasal passages open and deformed, and taking out her left eye (and the sight in her right eye was weak also). Not only that, but she suffered from a slight spinal scoliosis, and she lacked external ears.
Now, I know enough embryology to be aware that the bones of the skull form on both sides of the head, and towards the end, knit together in the middle. A partial failure of this produces a hare lip, and a more serious failure a cleft palate, both of which make eating difficult, especially for a baby, which must be able to suck. But what happened to her was something terrible. Her parents would have been presented with a baby with a gaping hole in the middle of her face.
Her first operation took place when she was just 13 days old. I'm thinking now: this would have been 1963. We didn't have a universal health system at the time, but most people belonged to health funds, and Queensland had a free health system. Probably most of her seventeen major and four minor operations took place at public expense. And they were not yet completed, though I got the impression the end was near.
Have you noticed how many people these days have a slight upward twist in the upper lip? This is the last remnant of a repaired hare lip. Even in 1963 surgeons were skilled at repairing both hare lips and cleft palates. But in this baby's case it would have been difficult, and probably initially makeshift. And it would still have left a gaping hole where her nose should have been. Anyone who has suffered a head cold will be able to imagine the consequences.
"They took a piece of flesh from another part of my body," she said (I forget which part), "and made a nose for me." That explained the shapeless lump in the middle of her face.
If this cheerful, outgoing young lady had any character defect, it was that she hardly ever stopped talking. At one point, in a lull in the conversation, she must have found the pause tedious, so she turned to me almost cheekily, and said, "Do you know what name I used to hate being called at school? Flatnose!" Yes, children can be unkind. But flat nose and facial deformities beside, it obviously hadn't done much to blunt her vital, extrovert personality. I doubt if she found it difficult making friends - assuming they didn't want to get a word in edgewise. She also had boyfriends, because apparently I resembled one of them.
It was Monday. "My artificial eye doesn't come back until Thursday," she announced. I was amazed. Up till then I hadn't noticed that, behind the thick spectacles, her left socket was empty. At some point she had to turn her ear to me, and I noticed a hearing aid. "That's another thing," she added, with a grin. "I'm a bit deaf also."
Some people's lives are so hard you are wrung with pity. But this girl was different. I was filled with admiration at the way she had not allowed her terrible condition to warp her spirit. But perhaps I was looking at it from the wrong perspective. We are often shown news of sick or crippled children, and admire what is called their "courage". But the fact is, children automatically accept the situation into which they are born as "normal". What they cannot tolerate is a lack of love. With it, they can face more or less anything. Perhaps it is easier to cope with a deformity or disability with which you are born than one you acquire in later life, when you have experienced the alternative.
I am reminded of Francesco Lentini, a real life Jake the Peg, with an extra leg. In his youth it drove him into severe embarrassment and depression, until one day he visited an institute for severely handicapped children. He was so shocked by what he saw, he decided never to complain about the hand fate had dealt him again.
At the end of the bus journey, I caught a train, and I never saw the young lady again. But I was never able to forget her. I consider myself privileged to have met her. I also consider myself privileged that, like the vast majority of people, I am, so to speak, "normal", with no deformity or disability. I also feel privileged that I live in an era when medical science can perform such miracles, and a society which can afford to provide them for the afflicted.
My companion of the journey would be 54 now. I wonder how she turned out. I suspect she married and raised a family. After all, she once had a boyfriend who looked like me. True, she was ugly, but good looks are just the bait. Most of us will cross a room to meet an attractive member of the opposite sex, but not an unattractive one, but that only means that the unattractive have to try harder. Trust me, ladies: men are not really interested in your looks, and even less your mind, but in your personality. And in that, the girl I met in 1982 excelled.
It is only coincidental that one of the charities I support is the Australian Cranio-Maxillo Facial Foundation, which provides surgeons to correct facial deformities in children in the Third World.
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