So one Saturday morning they sat down at our kitchen table and had a family discussion. And they talked about my face and about my legs, and talked about whether they should bring me home. And my parents gave my brothers and sisters a vote and they asked: should we bring Robert home? And one by one, my brothers and sisters said yes. My younger sister Catherine was only four at the time, reckoned she only said yes, because everyone else said yes before her. So maybe peer pressure is OK, sometimes.
And home, I came and after I came home, my parents had to actually then take me out into the big wide world. And when they did, they started to notice people’s reactions and it’s quite funny. In terms of participation in society, it’s probably the fact that I have no legs that has more of an impact than my face. But people who meet me for the first time often don’t even realize I have prosthetics, we are judged on our faces.
So my mother would take me shopping and she’d see people staring. My dad would take me swimming and he’d listen to other kids ask about my squish nose and my funny face.
So by the time, I got to about four, doctors had spoken to my parents, and they said, “Look, we want to fix this. We want to do some pretty major surgery on Robert’s face to make it look a little bit more normal, so he can socialize when he gets to school.” Now I’d had a couple of operations before then, one to remove the tumor on the front of my face, so I was left with a flat face, and a few other minor things but this was going to be a pretty major operation.
And the doctors told my parents, they’re going to do about 40 different surgical procedures. First of all, they’re going to slice open my face, cut a V-shaped chunk out of my skull, push my eyes back to the front of my face. And then because I had no nose, they were going to use one of the deformed toes they were amputating to build me a new one. Simple, right? We’ll give it a go outside and afternoon tea.
So that all sounded pretty interesting to my parents, and then the doctors started talking about the risks. And look, there could be excessive bleeding, there could be an infection, we might stuff it up the operation, might not work. Oh and by the way they said, there’s a one in four chance your son may die on the operating table. 1 in 4!
Now my dad was a gambling man and he did not like those odds. He started arguing with my mom and my doctors and said: Why would we risk our son dying? Why would we risk him dying at that higher chance just for pride of appearance as he called it.
Now my mom I think understood better the importance of appearance and at least having something a bit more normal of an appearance when you’re growing up. And so they argued back and forth, back and forth for months and went back and forth to the doctors with questions about the risks and could it be mitigated and getting a sense of what it would mean. And it got to the point where my mother threatened to leave my father and go away and sign off permission for the operation to go ahead on her own. Luckily it didn’t come to that, my father eventually agreed and I survived.
After that I looked a little bit more human, I had a less than perfect nose, but I had eyes at the front of my head and I got on with life.
Skip ahead ten years. I’m 14, kids are pretty much guided missiles when it comes to finding every bump, every scar, every nose made out of an old toe that they can find. And they did. So by the time I was 14, I had accumulated a pretty strong playing roster of nicknames: Jake the pig, Pinocchio which didn’t make any sense because he’s known to grow and stumpy, retard and a quite specific and actually pretty awful toe nose.
And those were the sorts of things that stopped me being comfortable with my face. Those were the things that stopped me owning my face. It’s hard to sort of deal with pimples and bad haircuts when you don’t look like everyone else and you look so different from everyone else.
So doctors then started talking to my parents about another operation, because at that stage I’d started to notice girls, and I’d started to notice girls noticing my face. And doctors had started to notice me noticing girls knows my face. So they said, well, we better get stuck into Robert again.
So what they said is, OK, we’re going to do another big operation. And by then I had about two dozen operations, some minor, some like the re-making of Robert Hoge when I was four, quite substantial. And they said, OK, we’re going to do another one.