There once was a girl whose life started with a glitch. A wee glitch in her wee body.
But the glitch was found, and she was flown away – only 8 hours old – flown away to the big grey city in a big orange helicopter. And that helicopter took her to a place, a special place, the best children’s hospital in the world. The hospital where children got HIV from transfusions and children mysteriously died in cardiac care.
Experts familiar with wee bodies and wee glitches took out her glitch so she could live. And like a torn teddy bear sewn up by a four year old boy, her incision was stitched shut – well, mostly shut anyway. Intravenous fluids were pumped under her delicate wee skin by qualified nurses, damaging it irreparably. And if this wasn’t enough, an infection found its way into her wee shoulder.
The doctors told this poor and humble family from a northern ontario mining town that the infection could be treated with antibiotics, but there was a chance the growth plate could be affected and her upper arm could be short as a result.
Time passed and the wee girl was released and brought home. And the wee girl became a little girl. And the little girl moved away from that poor rural town with her parents. Together they moved to what became a more affluent neighbourhood. Her mother was schizophrenic, and her father was a pipefitter, but her peers were the children of white collar parents. She didn’t quite fit in.
And as she grew, her arm grew too. And her parents and her sister were relieved. But then one day her arm stopped growing, and never grew again. Nine more centimetres of growing did the right arm do, but the left never did catch up.
Her parents took her to the doctor who assured them that the little girl could have an operation to lengthen her arm when she was 18 and stopped growing. It sounded so simple, so true. Who would ask if this was untrue? Who would question a doctor?
So the little girl grew into a big girl knowing that although she was different from other kids, and her family was different than their families, at least her arm could be made the same. At least that could be fixed. And clinging to this simple truth, she turned 18.
Turned 18 and went to the doctor to fix this difference in her arm. It was time. She waited for this for years and it was time. But no, she was told. We don’t do that sort of operation on arms. Maybe if you were younger, but not now. No, no – go home, young lady, go home.
So with nothing to cling to any longer, she went home. Home to her father dying of cancer, and her schizophrenic mother who stubbornly refuses to die. But in her heart she still held on to this hope that someday the difference, this one difference, could be fixed.
Her father died, and her mother got worse, and the girl – now a woman – would always be different. Then she read a story and saw a picture of a boy, a little boy who had an infection in his shoulder. A little boy who grew to become a full grown man with one arm that was different than the other. A short arm. An arm like hers. But this boy, this man, had his arm lengthened. And there he was, in colour pictures. The smiling man with his newly lengthened arm.
The hope grew stronger and the young woman held fast to it as to a raft in an unforgiving sea. She made calls, made arrangements, had tests and xrays performed. All these things she did so that this one difference could be fixed. So that she could have this simple normal thing that other people had.
And with hope shining so brightly that she could see no chance of disappointment, she travelled back to that same big grey city and saw a new doctor. An orthopaedic surgeon. An expert familiar with limbs and their lengths. A doctor who could make her normal.
But he told her she was not normal enough to have a good chance at successful surgery. Her shoulder, you see, was not the right shape. Perhaps if she was in pain, perhaps if it impeded her chosen or desired vocation it might be worth the risk. But she had mobility, had strength, and the shortness was merely a nuisance.
But the arm had no pain because the pain was in her heart. How does this pain fit into the mix?
Perhaps a doctor in Maryland can offer a more positive opinion, he said. Go there, if you wish, and return with his consultation notes.
Perhaps that raft will float to Maryland.
I don’t know this young woman very well, although I was the first person to ever lay eyes on her. I feel like a godparent, like an aunt. I’m seventeen years older than she, a lifetime older. Each of us fears failure, each of us seeks stability and security. Each of us is creative and artistic in our own ways. And we have the same sense of humour. But we are also so different from each other. We have the same parents, but mine were younger. I grew up poor in a poor town where the children of doctors dressed the same as I did. Her parents were more affluent than mine – a change in location and economy – but nowhere near the affluence of her classmates. And as it turned out, she has more scars than just those on her skin.
Surgery may make her arm look more normal, or it may only offer marginal improvement in length married with a reduction is usability. At what point will a person be happy with herself, with who she is? What will help her accept herself, like herself, find worth in herself, love herself?
Who knows? I hope she finds her way safely.
