By KATE HUNTER
Did you see Australian Story last night?
It was about Robert Hoge, a 40 year old Brisbane writer who was born with a tumour where his nose should have been – pushing his eyes to the sides of his head, ‘like a fish.’ His legs were also deformed, one much shorter than the other with a twisted foot.
For weeks, his mum refused to look at him. When she was finally persuaded to see him, she decided she felt nothing, and left the hospital without him. It was only when Roberts’s two brothers and two sisters took a family vote that she agreed to bring him home. Once that decision was made the family, Mum included, embraced their littlest boy and got on with life:
When Robert was four, his parents said ok to a massive operation that would improve his face. It involved shifting his eyes from the sides of his head and creating a nose from the bones and tissue of his feet, which the doctors planned to amputate.
There was a one in four chance Robert would die.
Those are scary odds to take – especially on an operation that wouldn’t improve a child’s physical health – just the way he looked and the way the world treated him.
If he didn’t die, there was a big risk his eyesight would be lost and there was a fair chance he would suffer brain damage (testing had since shown a near genius-level IQ of 134).
Robert’s parents, Vince and Mary were divided on whether the operation should take place. In his memoir, Ugly, (which you should absolutely buy and read) Hoge wrote:
Pick up two dice. Now roll them. If the number adds up to ten, eleven or twelve, I die on the operating table.
Vince did not like those odds.
‘No,’ he said, he would not give permission for the surgery to proceed. No operation to make me look more normal was worth a on-in-four chance of me dying, he thought. He was never one to be concerned about ‘pride of appearance’, as he called it. What use being slightly less ugly and dead?
Mary, on the other hand, was much keener to see the operation go ahead. She trusted the doctors – they had looked after me well since I was born. Despite the risks, she decided it needed to be done to give me a fair chance at a normal social life. My parents argued back and forth. For months the question remained unresolved.
Eventually the issue came to a head. The hospital only required the signature of one parent to undertake surgical procedures. Mary told Vince that should his decision be no, she would consider leaving him and taking me with her so the decision would be all hers.
And she was ready to do it. She had gone from being a new mother who did not want to see her baby, let alone bring him home, to someone who would put everything on the line for his future.
Mary wasn’t trying to blackmail Vince. (Blackmail wouldn’t have worked anyway – not on Vince.) She was just conveying the strength of her conviction that the operation was worth the risk.
A few days later Vince finally said yes. Even though he couldn’t understand why people would judge others at face value, he knew it was a fact of life. To be fair to me, he said, to save me being rejected by society, the operation should go ahead. Both Mary and Vince signed the consent form.
It sounds simple describing it like this, but the whole procedure took double the time expected, clocking in at more than twelve hours. I started the day as a boy with a right leg and a deformed right foot, no nose and eyes at the side of my head.
I finished it with my eyes moved to the front of my head, my foot and leg amputated and transformed into a new nose, and pieces of bone used to fill the gaps in my head. Despite the difficulty if maintaining the anaesthetic at a constant level, despite my losing enough blood to require my whole body’s worth to be replaced three times over, and despite having my head and leg cut open and put back together again, I survived.
I was Robert Hoge, born a second time.
There’s so much that’s fascinating about Robert Hoge’s life and attitude. His memoir is warm and funny – a great read about what life was like for a sports-mad boy with facial deformities and without legs. He writes with love for his family and friends and admiration for the doctors who cared for him.
School was no picnic. He lists the names he was called and rates them according to creativity, humour and ability to hurt.
But it’s the question of, ‘Is ugly in itself a disability?’ that got me thinking – and whether I would have rolled the dice on my child’s life had I been in Mary’s shoes.
It’s a big question, and I can’t presume to know the answer.
The closest I’ve come to such a dilemma (and it was nothing, nothing in comparison), was when my daughter was born with a port wine birthmark the size of her hand, splashed across her nose and right eye.
The doctors at Sydney Children’s advised a series of laser treatments. No big deal, but because she was so little and her eye was involved, the procedure involved a general anaesthetic.
Everybody told me, ‘She’ll thank you when she’s a teenager. Kids can be cruel.’ Even then it struck me as unfair: because ‘kids can be cruel’, my baby needs medical treatment? How messed up is that? But we did it.
When Robert Hoge was fourteen, his doctors wanted to operate again. The aim was to bring his eyes closer together and fill in the gaps in his skull left by previous surgeries.
It would make him look ‘much more normal’, but there was a significant risk to his eyesight. Robert’s parents left the decision to him:
I could take my chances and make my ugly way in a sometimes ugly world the way I was. Or I could trust myself to the doctors who had done so much to get me so far. I could give them the chance to move me a bit closer to normal, risks, rewards and all. Pick up two dice. Now roll them. I had made up my mind. ‘No, I don’t want to have this operation. I don’t want to have any more operations. Ever.’
In an ideal world, kids wouldn’t be cruel and everyone would be judged on things like character, intellect and kindness. But the world isn’t ideal, so we’re grateful when doctors can fix the things that make us ‘wrong’.
If you were Robert’s parent, what would you have done?