My very first memory was of my parents crying. My father was holding my mother, who was crying. My crib was wheeled past them as they looked at me. The next thing I knew I was placed on a large, cold table with huge, bright lights overhead. I was holding a plastic squeeze baby and the room was filled with people. I was 18 months old and about to have my first open heart surgery.
I was born in 1959. This, as it turns out, was not any too soon. I was born with a congenital heart defect. In 1953, the heart-lung bypass machine was invented, and first used on a human. It was fraught with complications, but deemed safe for open heart surgery in 1960. Probably one of the few times in my life that timing was on my side.
At about the age of three, they discovered I had another murmur, and a second congenital heart defect. Back in those days, there were no echocardiograms, no state of the art equipment or procedures to give my parents a diagnosis. So all they knew was that I had some bad stuff going on in there and no way to treat it.
Having congenital heart disease shaped my entire future, from the way my family and outsiders viewed me to more importantly my own self perception. It meant that from my very first days of life, I was different. My family treated me like I was going to die at any moment, partly because that’s what the doctors were telling them. They were told that I was not expected to live beyond the age of five. I wasn’t to have any stress, no exposure to illnesses, no extreme temperatures, no high altitudes. My parents went to all kinds of lengths to keep me from crying, because they believed it would be too much strain on my heart. Fortunately, for them, I was pretty easy going and didn’t cry much anyway. As I grew older, however, this worked in my favor. No physical punishments. I remember watching my father discipline my older sister and brother, by whipping them with his belt, or a wire coat hanger across their backsides. Without having ever felt the sting of the belt, I knew then I would never do that to another human being.
When my sisters or brother got sick, I was shipped off to my grandparents so I wouldn’t fall ill. No measles or chicken pox for me! When I caught a cold, I was kept home from school. In the third grade I spent almost the entire year out of school, and had to have a home tutor to pass on to the fourth grade. When my family went on their family vacations to Lake Arrowhead, in the mountains of California, I was sent off to my grandparents. I did get to go to our family vacations in Palm Springs, but because of the heat, I had to stay inside almost all day while everyone else played in the pool, the desert or went off to the mountains.
I was always a little small for my age. I wasn’t allowed to jump rope, play hopscotch, run, skip or generally do the things kids used to do before there were computers and video games. I did have a bike, but my mother only allowed me to ride it in my driveway. My father argued with my mother for days to allow me to ride without training wheels. She was afraid that without training wheels, I would ride faster and have a heart attack. My mother was always telling me that if I did this, that or the other thing, I would have a heart attack. When I was young, I actually used to wonder whether today would be the day of that heart attack. As I got older however, I began to think my mother was perhaps prone to hyperbole.
I belonged to a group called Los Corozones for kids with congenital heart disease. Getting together every month or so, the mothers would commiserate, and the kids would talk about how it sucked to be us. None of them had had a heart attack however. And in talking with them, it became evident to me that none of their mothers even mentioned having a heart attack. So at some point my fears of having a heart attack faded. Until one day, my best friend in the group, Bobby, didn’t show up. When I asked my mom what happened she told me he’d had a heart attack and died. I was stunned. My heart felt like it was too big for my chest and I could barely breathe. My cardiologist, Dr. Johnson, and his wife and family always came to these outings. He came to talk to me and I asked about my friend Bobby. I asked how soon it would be before I had a heart attack like Bobby. Turns out Bobby never had a heart attack. He died of pneumonia. My preoccupation with heart attacks died that day, and my covert physical activities skyrocketed.
Recess at school was always a struggle for me. I was supposed to sit on the bench with my teacher, while my friends ran out on the playground to expend all that pent up energy. Occasionally, if I asked sounded sweet and looked just slightly pathetic, my teachers would reluctantly let me be the kicker in the kick ball game, or the thrower in dodge ball. I lived for the times that my teacher’s attention was diverted even for a moment, so I could run to first base. I was always a little slower, always just slightly out of breath. But I never let it show, and I would turn myself inside out to keep up.
When we were in 7th grade, P and I started a hiking Club with Mr. Pat, one of our homeroom teachers. But before they let me join, Mr. Pat made it clear that I had to have a doctor's release. So I made an appointment with Dr. Johnson and basically begged, pleaded and cajoled my way into a "release"...such as it was. I had to promise that I would hike no more than 2 miles at a time and at no higher elevation than 2000 feet. Fortunately for me, he didn't put the criteria in writing, and I never volunteered the stipulations to my teacher. But I was good to go! Our first hike was five miles at 4,000 feet elevation. I was the last to get there and towards the end I felt like my heart would just pound right out of my chest, but I made it. I really just thought that most people felt that way. To feel my heart pounding in my ears was “normal” for me. So it never occurred to me that I had any symptoms; I was just out of shape. From that point on though, there was no stopping me. Before the year was up, I had climbed Mount Baldy, which was just over 10,000 feet high. And again, I was the last one to reach the top. P. hiked back and hiked back up with me. But I did it. I climbed a mountain and I didn't have a heart attack. It was my “Mount Everest”.
When I was in high school I had to take adaptive PE. But everyone just called it retard PE (politically correct was not yet a concept). Basically, we got all dressed up for PE, then sat around in a room and looked busy until the bell rang. I used to stand at the door and watched the kids play tennis. I begged the tennis instructor to let me play. But her answer was always the same “I just need a note from your doctor”. So one day, while at my cardiologist’s office I got up the nerve to ask if I could take archery (somehow forgetting to tell him that tennis was the other half of the class). He reluctantly signed a somewhat vague statement releasing me to take the course (thank God her never wrote specifics!). The next day I ran to the tennis instructor and showed her the note. And I was in regular PE for the first time in my life! No more retard PE. As it turned out, I was terrible at tennis. I spent a LOT of time chasing after the ball, and I never could get the one-handed back-hand swing. No tennis star had yet made the two-handed back swing famous. But, I never complained, and I was always thrilled to chase after the ball. It made me fell normal.
During my second or third year of high school, my friend P. and David and I joined a hiking club with Mr Martin, the French teacher as adviser and chaperon. Of course, again I had to get a doctor’s release. I swore to Dr. Johnson (again) that if he let me do this, I would strictly abide by our previous rules (which I conveniently never kept the first time). Almost every weekend I was hiking or backpacking. By then, neither of my parents were around to even ask how far, or how high or how long I'd be gone. Towards the end of my junior year, the hiking club backpacked down into the Grand Canyon and back up. I wasn’t last, but close. But by then I had gotten used to the struggle. Climbing out of the canyon was grueling, but it was an awesome trip. For me it was just one more piece of evidence that the doctors and mother were wrong. My heart was fine. I could do anything I put my mind to. And I did.
Until I didn't. Three days before my 21st birthday, I had open heart surgery for the second time in my life. And that time changed my life forever. I’m no longer the slowest, the weakest or the least fit.
To be seen as weak, unfit, ineffective or incapable was my worst fear as a child. And that fear still stays with me as an adult. I have no more physical limitations, yet I still need to be near the front of the pack when I’m hiking, bicycling, or whatever I’m doing because I’m afraid I’ll get left behind, and I won’t catch up. I don’t know if that fear will ever go away. But now I know where it came from. And I can get on with my life.
My father finally won the argument and took off the training wheels from my bike. My mother was standing on the steps of the backdoor watching as I took my first ride unencumbered down the driveway. Halfway down I fell and broke my glasses. My mother went ballistic and started yelling at my father, who started yelling back at my mother, and everyone forgot about me. I got up, got on my bike and rode down the driveway and down the block to bigger and better things. I never looked back. And sometimes even now, when I am afraid that I "can't", I remind myself to keep riding and not look back.
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