Ask Me Anything: Brian Jay

Celebrating its 30th year this month, Riley Hospital’s Camp About Face helps kids with craniofacial anomalies build self-esteem. Jay, a longtime volunteer, is better suited to do that than most—he was one.
Before we talk about the camp, can you tell me a little about your own experiences that led you to volunteer there?
I have Apert syndrome, which is one of the rarest craniofacial anomalies. I’ve only met a couple of other people with the condition. Typically, when you’re born, your cranium isn’t fused together—you have a soft spot on your head. Kids with Apert don’t. That’s bad, because it doesn’t allow your brain to grow. I had my first surgery two weeks after I was born—cutting open the skull to allow my brain to grow. Next came the reshaping of the nose and eye sockets. A lot of it involved taking bones from my rib cage and moving them to my head. I had a team: a plastic surgeon, a speech therapist, an audiologist, an ophthalmologist, an orthodontist. I’ve had more than 50 surgeries at this point.

What was your family life like growing up?
When I was 7, my dad left. He must have hated the constant trips to the hospital. He clearly thought, There’s something wrong with my son and I can’t deal with it. Which is why I admire my mom so much. When I was in Virginia for a monthlong series of surgeries, she lay in the cot next to me every day. She never left my side. If she ever got emotional about it, she did it in private. I didn’t see my dad again until I invited him to my wedding decades later. On some level, I think I invited him to show him, Hey, I turned out OK despite you leaving.

How old were you when you realized you looked different from other kids?
I became aware of it in first or second grade. I knew there was something different about me, but once you reach that age, you start to pick up on the staring and the teasing.

How much did the staring bother you?
Not much. You learn to deal with it at a young age. My perspective is: I get it. I look different. People are curious.

Did your mom ever sit you down and explain that life was going to be a little different for you?
My mom was always very matter-of-fact about it. She said, “You’re going to have to deal with these surgeries, but we’re going to try to make your life as normal as possible.” I was expected to get good grades like everyone else, encouraged to participate in extracurricular activities like Boy Scouts.

What did you see when you looked in the mirror as a kid?
Mirrors never bothered me. But there were times when I would wake up sweating after a nightmare about needing another surgery. I would smell the phantom anesthesia. That’s what would make me emotional.

What’s the meanest thing anyone ever said about the way you look?
It may not be the meanest, but I like to tell this story because it’s the funniest. I always share it with my camp kids. I was at McDonald’s with my friend Rob shortly after I finished law school, and when we walked up to order, the cashier looked at me and then looked at him and asked, “What does he want?” Rob’s response was, “Well, he has a doctorate. Why don’t you ask him?”

You have an admirable sense of humor about it all. What has having a craniofacial anomaly taught you about life?
At the risk of sounding boastful, I would say I’m the most mentally tough person I’ve met. All that hardship made me a lot stronger. Now life’s little disappointments seem trivial. So the basement floods. Who cares?

What conditions do you see at Camp About Face?
Treacher Collins. Crouzon syndrome. A lot of cleft lips. But there’s no moment like there is at AA: Hi, I’m Brian and I have Apert syndrome. Some of the kids want to talk about the conditions they have, and they can. But nobody forces them. The goal is to have fun and build their confidence.

How would you describe the various personalities of the kids? Are they typically shy because of their conditions?
No, it’s the same range of personalities you find with anyone else. Some are shy, some are extroverts. The extroverts may try a little harder to bring the best out of the introverts. I was shy, but it didn’t have anything to do with the way I looked. It’s just the way I was.

What’s your role at the camp?
A few days before camp starts at Bradford Woods in Southern Indiana, there’s a Leadership Academy designed for the older kids. I gravitate to the teenagers because I want to share my life experiences with them, to assure them that they can go to college if they want to, get married if they want to. That message tends to go over the heads of the little kids. So once the teenagers check into their cabins, I work with them on team-building in a lot of outdoor activities—obstacle courses, for example. The idea is to build the camaraderie of that group so they can take the lead when the younger kids arrive.

Do the teenagers have a little more self-confidence than the younger kids?
Not necessarily. It’s almost worse during the teenage years. You always know you look different, but you become more aware of it as you get older. You start liking people of the opposite sex, you’re more self-conscious. Life is so different for today’s kids than it was when we were growing up. There’s this intense focus on image and appearance on social media.

How emotional does it get at camp, and how does that affect you?
Oh, it gets emotional. I’m not a crier, but many of the kids are afflicted by bullying. Bullying has always been a thing, but there are so many forms of it now—cyberbullying, especially. It’s worse for the girls.

Does any dating happen there?
Sure, just like any other camp. Kids end up making out behind the cabins. Those experiences can build confidence. A kid might think, OK, that camper seems to like me even though I look a little different. Maybe I can ask out that boy from class who doesn’t have a craniofacial anomaly. Let’s see how it goes.

What misconceptions do people have about these kids based on their appearances?
Well, when people first see me or hear my story, they sometimes think, My God, you must have had a really rough life. But I’ve had a great life. I went to college, got married, had a family. The way I look doesn’t define me and it doesn’t define them.

Do you see yourself in some of the campers?
Yes, especially when they’re going through surgery soon. You never forget the fear. One might say, “I’m going to have the LeFort procedure,” and I’ll think, Yeah, I had that three times. That’s why I’m there. I’m the light at the end of the tunnel.