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.
There were 160 of them, running around the beach, playing like normal kids, their shirts off, flaunting their scars. They didn’t feel self-conscious and, for once, neither did I. I took as many pictures as I could, wrote down as many names as I could remember. I was overwhelmed. Micah was being pulled around the beach in a wagon, surrounded by other kids. I managed to squeeze off a couple of frames as he went by, and was floored. Jeni’s energy, spirit and vitality were obvious from the minute I started talking to her. Grant came up to me and said, “Take a picture of the peacemaker.” He had put a fake tattoo of a peace sign over the spot where his pacemaker was. Even a year later that joke still cracks me up.
So here they are. Young and old, all at the same time. And here I am, maybe with a little better understanding of what I was thinking. At least, for once, with some company. And as much as it may seem sad or it may seem tragic to someone else, I’ll tell you right now how it seems to us: We’ve got a head start. We cut through life, right to the chase. We’ve got an unfair advantage. We’ve got a heart like a motor.
Nicole, 10 years old, missing left coronary artery
Nicole with sister Christie, Anaheim, CA, 12-19-99
“Tell Max who you met at UCLA.”
“They were having a golf-tournament promotion.
The Lakers were there, and she met Bill Murray.”
“What’d he say about Nicoles?”
“All Nicoles are babes. That’s what Bill Murray told her.”
—Nicole & her mother
Nicole was running at school, and she passed out and fell right on her face. A doctor at the Children’s Hospital here thought that it was just weird for a little kid to do that, so he sent her to UCLA to have some tests done. They did an angiogram and saw that she was missing her left coronary artery. For seven years the left side of the heart hadn’t been getting any blood to it. They had never seen this before, and they didn’t really know what to do. Her heart was sped up, it wasn’t a safe situation. They did surgery almost instantly.
They took an artery that was already there, and they grafted it to the heart. They weren’t happy with it, but sent her home. There’s a stent in there with some arteries that aren’t growing. But by the time she’s a teenager, they hope [the arteries] will grow a little bit. They’ve never done this surgery before. The first child to ever walk out of the hospital with a stent in her coronary artery. She’s made the medical books a couple of times.
—Phyllis, mother, Anaheim, California, December 19, 1999
Ali, 10 years old, ventricular
septal defect, subpulmonary stenosis, transposition
Ninth birthday party,
Thousand Oaks, CA, 3-25-00
I didn’t understand her problem until maybe four years into it. Whereas my husband’s a plumber. The day they explained the problem, he got it, ’cause it’s all plumbing.
Thousand Oaks, California
January 29, 2000
Patty, 15 years old, hypertrophic cardiomyopathy, implanted defibrillator
Pre-operative checkup, Good Samaritan Hospital,
Los Angeles, CA, 1-03-00
I was born the year my sister died. Her name was Rayna Marguerita. I had a brother and a sister. They both died at the age of 10 from heart attacks. The same condition that my brother and sister had, both my parents have it too. My mom’s mom died when she was three. We don’t know what from, but possibly for the same reason.
Grant, 15 years old, single ventricle, transposition,
m.v. prolapse, implanted pacemaker
Cave Creek, AZ, 3-16-01
He’s a real normal kid. We’ve never lollipopped him, you know. We let him try everything. ’Cause if we didn’t, it would be a big crutch for him.
At Camp Del Corazon, Catalina Island, CA, 9-5-99
Micah, tetralogy of Fallot with pulmonary atresia
Tucson, AZ, 1-10-00
Micah weighs 40 pounds now. He is . . . short. There are kids who tower over him in his classroom. But I think Micah’s very confident. Micah is invincible.
Even when he had to resign himself to a wheelchair. It was, like, this is pretty cool, ’cause the kids at school push me around. So everything seems to turn to his advantage. He’s always had more than two girlfriends. They would wait for Micah to get there. They would just climb on to him and one would say, “I’ll carry your lunch pail,” “I’ll carry your backpack,” “I’ll carry your jacket.” He had this entourage of girls just following him.
Tucson, Arizona, January 11, 2000
Micah with father, Kim, Tucson, AZ, 1-11-00
I’m a radiologist. It was very difficult being a doctor. Once I recall letting the nurse know that Micah had a tendency to clot off things and asked if she could make sure he was on blood thinners as soon as possible after the surgery. She was pretty rude and essentially said it was none of my business. Three days later, without the blood thinners, his lung arteries on the right side clotted off. Later on I got to read a half-page note from her writing me up as being a parent that was out of bounds. Yet she went home, I’m sure, to a normal life and was totally unaffected by what had happened. I have to live the rest of mine wondering if I had forced them to get him on Coumadin sooner, would it have been different? If I had made her call the doctor to talk to me, would it have been different?
[Micah showed] symptoms of right-heart failure where his legs would get swollen.
They did what’s called a phlebotomy — just removing blood. They took off a couple hundred cc’s of blood and actually got immediate relief with improvement. He was so still for the entire procedure. They would draw [the blood] out with syringes, and it must’ve been painful because he’d just have tears welling in his eyes and a pained look on his face, but he didn’t move at all.
His sister, when his legs were swollen, went to her room and started just sobbing, knowing that Micah was getting worse. I went in to try to comfort her, and she just was hysterical, and she was saying it’s not fair, why does this have to happen to Micah?
Micah came to the door while we were talking, and I walked him back to his room. He asked why were we crying about him, and he asked if it was because his legs and stomach were swelling. I said, “Yeah, that was it.” And he said, “Well, Dad, my legs really aren’t swollen. My socks are just too small.” Then he said, “And your stomach’s getting fat, too.” I had to laugh. It was actually a pretty amazing comment.
—Kim, father, Tucson, Arizona, January 9, 2000
Micah passed away on April 16, 2000, at age 11.
Scott, 14 years old, transposition of the major vessels
Four days after valve-replacement surgery,
UCLA Medical Center, 6-20-00
Penny (mother): He really loves sports. Loves sports. But the running is too difficult for him. He’s always gotten straight A’s. And all of a sudden he’s getting a C in P.E. because they grade you on how many laps you do. An A is four laps, a B is three laps and a C is two laps.
Art (father): He was pushing himself to get a C.
Scott: I get tired more easily than other people. In P.E., they don’t always ask, but you can tell by the look on their faces. They are shocked by seeing all these scars. They say I have five bellybuttons.
Once in a tennis tournament, they didn’t have enough players, so I played a singles game, and it was getting toward the end of the game, but I got very, very tired and I just had to quit.
Penny: He was so tired, and he finally lost, and then he just couldn’t even breathe. He sat down and it took about 10 or 15 minutes for him to be able to breathe again normally. He was so tired.
—West Los Angeles, California, November 17, 1999
At swim school, Los Angeles, CA, 5-13-00
Trent, 8 years old, heart transplant recipient
Anaheim Hills, CA, 11-12-00
Mario, 10 years old, transposition of the major vessels, implanted pacemaker
With pacemaker, Camarillo, CA, 12-18-99
Jeni, 15 years old, hypoplastic left heart syndrome, implanted pacemaker
Camarillo, CA, 1-30-00
Dylan, 11 years old, pulmonary stenosis, single
ventricle, L-transposition, implanted pacemaker
With new haircut, Mesa, AZ, 3-12-01
[A doctor] came in to get Dylan, and I said to him, “I hear you had the Fontan*. What’s your defect?” He said, “Single ventricle. What’s Dylan’s?” I said, “Single ventricle, pulmonary stenosis and L-transposition.” He goes, “You’ve gotta be kidding. That’s the same exact three defects I have.”
It was really kinda weird because they had identical hearts. His name is Doctor Atkinson. He had been a recipient of the Fontan 11 years previous to that. There’d be a group of doctors standing at the end of Dylan’s bed, and Dr. Atkinson would come in and say, “I see you’ve met my heart twin.” They’d say, “Oh, we have so many Fontan’s in and out of here. You guys are just two out of a million.” They didn’t get it. It’s not that they had the same surgery, but their hearts were identical. Even Dr. Atkinson would say, “They just don’t get it.”
I think that’s the first time I really had hopes for him to actually grow up to be somebody. To see this doctor who had the same defects as my son, it just really inspired me.
—Deedee, mother, Mesa, Arizona, January 13, 2000
*The Fontan is a procedure, developed in the ’60s, that redesigns the heart to work without its right ventricle.
With sister Sydney, Mesa, AZ, 3-12-01
[When I grow up] I might be a scientist. One that studies medications. Stuff like that. I want to be, like, a scientist that discovers new cures. Like cures for cancer, something like that. First I wanted to be a mad scientist, which no one can be, because it’s science fiction.
—Dylan, Mesa, Arizona, January 13, 2000
Max S. Gerber is a freelance photographer based in Los Angeles. He hopes to adapt this project into a book. Photographs from this project can be viewed at the Avatar Gallery (340 S. Thomas St., Pomona, CA, 909-620-1167) through August or online at www.msgphoto.com/heartbook. For more information about Camp del Corazon, go to www. campdel corazon.org.