I have a heart like a motor and I can take more than you. That’s what I’d say to them in school, if they asked. I’ve been taken apart and put back together, I’d say. I’ve seen the wires and I’ve got the scars. I’ve got an unfair advantage over the rest of you. My heart beats about 72 times a minute, but it wasn’t always that easy. I’ve got help, I’d say. I’ve got a heart like a motor, it doesn’t stop, it doesn’t slow down, and it doesn’t skip beats.
I told one kid, when he asked “What’s wrong with you?” that I was a cyborg. It was the ’80s. It was a good word, with a small kernel of truth. Mostly, it shut him up and saved me from having to explain. But there were times — many times — when I couldn’t avoid an explanation. In seventh grade, when I told classmates I had a pacemaker, there were three kinds of reactions. One, they’d say, “Oh,” and then not ask any more questions. Two, I was told — usually by the girls — how brave I must be. And then my favorite, three, “That’s something that happens to old people.”
Max, self-portrait with brother James, 1978
That’s something that happens to old people. Yeah, that’s what I thought, too. As far as I could tell, even years later, they were right. That is something that happens to old people. I certainly had never seen anyone else in a doctor’s waiting room who looked like me. I hadn’t heard of anyone my age with a heart that sounded familiar. So the question came up again and again: “What’s wrong with you?”
I thought I felt fine. I didn’t look weird. At least, I didn’t think I looked weird. But still, there it was. There was something wrong with me. I was different, even if I didn’t think so. And as much as I didn’t feel different, the point was driven home by seeing other people do things that never would have occurred to me.
There was never a moment of invulnerability in my life. I was never the reckless teenager. I didn’t climb trees. I got tired quickly. I was careful. I elicited sympathetic looks from airport security guards. I couldn’t run. I couldn’t pedal fast enough. Other kids would have to wait for me. I didn’t take my shirt off to go swimming. I worried my sister. I didn’t want to waste time.
When they told me how brave I was, it always seemed a little strange. How can you be brave when you have no choice? Choosing to do something I didn’t have to do might have been brave (or it might have been stupid), but in this instance it was neither stupid nor a choice. It was certainly not bravery. Resignation might be more appropriate. Anyhow, those people who thought I was brave weren’t there to see me kick and scream when the IV nurse came around. I never really could remember how bad it hurt, but I was always sure that I’d taken more than anyone else I knew. There’s something about it that stays with you. I just remember thinking pain like that couldn’t exist, and I still didn’t believe it until years later when they proved it to me again.
Eventually, as I grew older, my friends started figuring out something intellectually that I had always seemed to know instinctively — that time is limited and the space in which to pack the whole of life’s experiences is small and cramped. Still, the funny thing is that I don’t remember learning this. I probably knew it just as well waking up from surgery at 8 years old as I do now.
But if I felt old or wise or any different at all, it had nothing to do with bravery, or even with what I’d seen or done. It was adulthood based upon resignation, not wisdom, and the proof is not just in the scars, it’s in the eyes. And if it’s not in the eyes after the first time or even after the second time, you can bet your ass it’ll be there after the third surgery. Some days I’d stare down the bathroom mirror and swear I wasn’t a day under 60. Other days, remembering that feeling, I was left puzzled. I wanted to know why I felt old at 13, and I wanted someone else to feel that way, too.
I realized that I was spending my time as a photographer searching other people’s eyes for that look I saw in my own as a teenager. Before I found the kids on these pages, I had never met anyone my own age or younger with a significant heart problem. Taking pictures gave me a chance to do so. In some ways I guess this whole project was selfish — I was looking for familiarity, not just photographs. I didn’t find it until I met Grant on the beach at Catalina Island. We were at Camp del Corazon, a nonprofit summer camp for children with heart disease, run by Lisa Knight. I was put in touch with Lisa after two years of fruitlessly searching for subjects, and she is directly responsible for getting me in touch with everyone on these pages. And so, on September 5, 1999, there I was at camp, my first encounter with what I’d been looking for all my life. The perfect mirror.