I was 15. Three of us sat on my friend's bed, talking about school. Her mother leaned around the doorway to say hello and exclaimed at how my other friend's face had suddenly blossomed into great beauty, which it had, the way some faces do when teenagers are growing into their adult bodies. "You could be on TV!" she said. Don't look at me, I prayed, don't say anything. But she had to, because to her, silence would have seemed worse. "And you, darling, have such ... an intelligent face." It wasn't a surprise, but obviously it struck deep, because I still remember it so clearly.
Being looked at has always made me uncomfortable. So when I became truly stareable in my 30s because of a disfigurement caused by Grave's disease, the stares and double-takes were especially excruciating. "Yep, female Marty Feldman," I would joke to ease the moment, referring to the late comedian and actor also known for his bulging eyes. Humour is the refuge of humiliation as well as adversity.
I didn't know what to do in response to the staring, or even how to think about it, because I had done plenty of staring myself. In my life before Grave's disease, I stared like everyone else – in that accidental, snagged way we do when we see something different. It's hard-wired into us to stare at novelty. Novelty stimulates the brain and the dopamine rushes in, causing pleasure. Yet we've been told since we were children that it is wrong to stare, so as adults we pull our gaze away, feigning nonchalance or indifference.
This initial stare is beyond our control. David Roche, an American comedian with a severe facial disfigurement, says that the first stare is not the time of hatred or prejudice or judgment. It's about getting used to difference. The second look is what counts – what we choose to do once our initial curiosity has been satisfied.
During my Marty Feldman period, when people stared at me then turned away as soon as they realised what they were doing, I blushed and pretended not to notice. Eventually I stopped noticing as much, although sometimes, the way people turned away in pity felt worse than the stare. But this is where the true weirdness came in. While I was pretending not to notice people staring at me, they thought I was staring at them. My swollen eyes and the extra exposed white around my irises made it look like I was widening my eyes in amazement – or worse, in a come-on stare.
"Do I know you?" was the most common response from people convinced I had been trying to catch their eye. Or the kind of "Helloooo" you do when you're trying to remember someone's name. I heard hopeless pick-up lines from men who'd interpreted my accidental stare as, "Hello, sailor." Sometimes there was anger. Furious looks came from people in train carriages or restaurants who believed I'd been glaring at them. I learnt to keep my head down, trying not to allow my gaze to drift to people's faces.
Living this way can change you. Not looking at someone while they are speaking means you miss visual clues to meaning. You are never sure whether your responses exactly match the tone of the conversation. I became less of a talker and more of a listener. Over time, my natural position shifted so that my neck stayed bent, the head permanently bowed. I still have a droop of the head, even though my eyes were eventually corrected by surgery.
Keeping the lids lowered over my bulging eyeballs also helped with the other problem – being the object of the stare. The problem was less conspicuous and the startled response from people was over more quickly. Not for children, though. Until they were corrected by their parents, they would stand with the hinge of their jaw open, concentrating fiercely on examining this strange apparition. I didn't mind that stare because mostly, it seemed to me, a child's stare was without judgment – it was a stare of awe and pure curiosity.
After those years of being both the starer and the stared-at, I became much more aware of how people react to a person in a wheelchair, or a scarred face, or someone who walks with a serious limp or drag of the body. I think we're all unsure of what to do – look away? Look longer? Smile? We don't know, and the resulting confusion makes whatever we end up doing seem awkward and insincere.
But it's the second look that counts. By allowing our curiosity to engage with the person rather than the difference, is it possible we could learn what it is like to experience the world in a different way, from the position of a different body?
I often think about something else Roche said: "My face raises fears in people. But I think people are not so afraid of our faces as they are of their own fear, the fear that they can be disfigured, not in the future, but now. My experience, after performing for 15 years, is that everybody feels disfigured. Those of us that are obviously so tend to carry the weight of that fear for other people."
Paddy O'Reilly's new novel, The Wonders, is published by Affirm Press.