...as a Kid With Congenital Heart Disease
Growing up with a congenital heart defect, my parents still had high expectations for me. They expected me to live an active life, have friends, and excel. As I ponder my upbringing, five of their expectations of me stand out as fundamental to my mindset and approach to life.
- Find and Test My Own Limits
In 7th grade, I tried out for the basketball team. It wasn’t pretty. The short version – I didn’t make the team.
During the tryout drills, we ran suicides – up and down the court, to the halfcourt line, then to the far foul line, then to the far baseline, and so on. I finished about two minutes after every other kid. At least, I think I did – I may not have even finished. My throat burned and my heart exploded from the straining.
In the hopefulness of young adolescence, I still thought I had a chance to make the team. When they posted the roster, I wasn’t on it. I bawled. For a long time. For days. I had so desperately wanted to play, to have a normal kid experience, to join a team. That all seemed to wither before my eyes.
For a year before that, I’d volunteered to help the athletic trainer after school. I liked it. It mixed sports and science, and I enjoyed both. With my heart problem, I thought maybe I could become an athletic trainer in life. That would keep me near the athletes I idolized and apply science in a hands-on way.
When I didn’t make the basketball team, I didn’t go back to volunteering with the athletic trainer. I didn’t tell her – I simply stopped coming. Maybe deep down I felt disdain for athletic training. It was the shadow game for those who couldn’t hang in the real game. Maybe I couldn’t face my friends who had made the team in that athletic setting, look in their eyes, and realize I could never really become their peers.
Mostly, I felt disillusioned with what this revealed – coldly, baldly, dispassionately – about the limitations of life with my heart problem.
I know my parents felt terribly for me. They ached, as all parents do when their child hurts. But they let me try out, even though they undoubtedly knew the outcome beforehand. They wanted me to try, to struggle, to thunder against my current boundaries – rather than impose their assumptions about my limitations on me.
That expectation has served me well in life. Later, in college, I joined the crew team as a coxswain. Practice meant rising at 5:30 am and walking about 30 minutes to the boathouse. The walk back to campus was mostly uphill. When I came to practice the first time, I didn’t know if I could do that kind of physical activity six days a week. I tried it, I liked it, and I made those walks my entire freshman year. In the process, I gained some strength and weight. And I came to wonder if I could become even healthier in life – even with my heart problem.
- I Would Not Feel Self-Pity
Oh wow – this one was huge for my parents. Mom and Dad would allow me moments of self-pity, but they would absolutely not let that mindset dominate my life.
At age 10, I could not play the usual ‘age 10’ baseball. It used a real ball and kids by then had become decent athletes. So I hoped to play tee-ball with my 7-year-old brother. No dice – the league didn’t allow kids older than 8 to play, whatever the reason. I felt awful. I simply wanted to play some kind of baseball-like game. Mom and Dad let me cry out the disappointment, then told me to move on. I did.
After my open-heart surgery at age 10, I couldn't do much for two months. No school. I couldn’t play with my brother. No salty foods. (Mom and I made pizza with low sodium V8 (a tomato-based juice popular-ish in America) as a base. It tasted as good as you assume.) Only my daily walks. And some TV and lots of reading. I hurt. I always felt winded. I felt down. More than down. Sad all the time.
Mom and Dad – especially Mom – would not let me have that self-pity. Frequently she reminded me of the good in my life. I could walk. I could talk. I had a family that loved me – Mom, Dad, my brother, my aunts and uncles, my grandparents, and many more. We were fine financially. I was never hungry. We had a nice home. I had a best friend in my brother. I had a good mind.
On the other hand, Mom and Dad did not merely dismiss my defect and gruffly tell me to toughen up. They knew my heart issue would impact my life, and had sympathy for the emotions I would feel. But again, they would not let me wallow in an unfortunate circumstance.
- Learn Self-Reliance
Every year, starting at age 9, my parents sent me to summer camp in North Carolina. The themes of Camp Carolina were, and are: “the wonders of nature, self-reliance, and high adventure.” I attended every summer until I was 21.
My time at Camp Carolina remains one of the formative experiences of life. Waking up every day in one of the most beautiful settings on the East Coast – Pisgah National Forest. Doing cool activities every day – archery, riflery, baseball, swimming, ziplining, canoeing, golf, and many more. It was awesome. And my younger brother was also there, which made the summers even more fun.
In certain moments, I felt anxiety while at camp. I wondered if I could do an activity. I worried about safety. And yet, usually, I attempted to take at least one uncomfortable step forward. When I went on a rock climbing trip, I fretted and read Don Baylor’s autobiography most of the time. But I also harnessed up and took some steps up that rock. I may have only made it about six feet, but they tantalizingly hinted at even more possibility in life.
As a teenager, I loved canoeing. We ran the Nantahala River, which has some class II and III rapids. One year, running the last rapid, we flipped. The gunnel nailed my face, knocking my glasses off – one of several pairs lost at camp over the years. Except for a bruise, I was unhurt. But I felt proud of my decision to run that rapid. That same year, for the “prize canoe trip” for the best canoeists, we ran the Chattooga River. It had many class III rapids, and even a class IV rapid (and one – called Keyhole – that only the counselors ran). One rapid involved going over a ledge, leaning back, and praying we didn’t flip. No joke. We didn’t flip and I gained enormous self-confidence on that trip.
Even as a counselor, at ages 20-21, responsible for six 6 to 7-year-olds, I occasionally worried whether my heart problem would get in the way. Every Wednesday we had “Cabin Day,” when each cabin would take an overnight hike. One week, we planned a long hike in Pisgah National Forest. I worried that I would slow the cabin down or worse, have an issue with my heart whole on the trail. But I desperately wanted the campers to enjoy a terrific trip. So I prepared well. I ate good, big meals before we left, so I had plenty of energy for the hike. I brought plenty of snacks with me I rested up. The campers and I reveled in a fun day together and the beauties of nature. We had a great hike. At the campsite, I put up the tents, made the fire, helped cook the meals, and simply did my best to be a useful counselor and role model. We all had a blast!
In all these moments, I did not call my parents or my doctor to get permission. The camp knew and my counselors knew about my heart condition. Of course, I would speak up if an issue arose. If an activity truly worried me, I wouldn’t do it and that was fine. (For instance, we took trips to a few waterfalls that other kids went down, but seemed too steep for me.) But Mom and Dad wanted me to confront these decisions, take one step further than I believed possible, and gain confidence in relying on my own intuition in life.
It worked. I loved my summers there – especially the times I took a step that made me slightly nervous, but also thrilled me with possibility.
- Do Well in School. Go to College Outside My Home State
Mom and Dad expected me to do well in school – really well. “We don’t allow Cats and Dogs in this household,” Mom said, meaning Cs and Ds. They pushed me quite hard academically, and I pushed myself. In high school, often I rose at 5:30 am to study for an exam, and would stay up past 11:00 pm doing homework.
From a young age, I recall them telling me they would not allow me to go to college in my home state. They would pay for me to any college that accepted me – anywhere in the world. But I could not go to school in Kentucky. They didn’t say it out loud, but I always assumed that admonition also included not attending school in nearby Indiana or Ohio.
While I never discussed the topic directly with them, I sensed they held two beliefs in creating this rule. First, they wanted me – and later, my brother – to see a different part of the country. Louisville was a wonderful place to grow up and my parents also wanted me to experience other amazing locations.
Second, more related to my heart condition, they did not want me to be able to retreat, say, a quick drive back to them if things got tough – with my life or health. Again, they wanted me to develop self-reliance. As I grew older, and as they did, they also knew the overwhelming likelihood was that I would outlive them. So I couldn’t always run back to them when a health hiccup arose. I had to take care of and advocate for myself.
As it turned out, I attended college in Washington, DC. I did have a couple of issues in college and later on– and I had to figure them out. My sophomore year, after the Philodemic Society’s weekly debate, some of us went out. I began coughing up blood and went to the hospital. A friend went, and stayed, with me in the hospital. The issue resolved itself, although the doctor put me on a medicine to reduce the likelihood of it recurring. After graduation, I had some instances of arrhythmia problems. I got to the hospital – usually with a friend, but a couple of times by myself. But I made the first move, and almost always began to figure out my options before contacting Mom and Dad.
- Find My Own Way in the World
While I personally don’t know anyone like this, I have heard stories of parents subtly or not-so-subtly exerting their influence so that their kids lived lives that they - the parents – wanted for them. I have heard of this happening especially in cases of congenital medical issues. Here, I mean especially influencing kids in terms of where to live or what career to pursue. In my case, I don’t ever recall my parents insinuating themselves in my life in those ways.
On the contrary, as noted above, Mom and Dad pushed me to consider a life of possibility – and to live it. I moved to Washington, DC, for college, and lived there for nearly 18 years. Along the way, I also lived briefly in Denver. For about six years, I traveled extensively for work – generally more than 150,000 air miles per year, usually by myself, all over the country, and to Canada, Australia, New Zealand, the UK and Asia. When I took vacations to Arizona, or California, or Banff, or Paris, or Barcelona, or Vail, my parents never urged me not to go. When I climbed the Harbour Bridge in Sydney, they wanted to see the pictures.
Finding my way also meant undertaking ways to improve my health they may not have anticipated. In 2004, I began strength training under the careful tutelage of “Maximum Bob” Whelan. (“If you train here, you are NOT NORMAL!”) After a few years of excruciatingly slow progress, I could (machine) squat 200 lbs and do one-legged deadlifts of 90 lbs. I gained muscle, weight and confidence.
They never intimated that my condition left me weak and in need of their constant guidance and oversight. Mom and Dad never implored me to move home or to settle down near them. (I don’t recall them ever speaking the word “settle.”)
Most parents would want to impart these expectations to their children. With my congenital health issues, those standards became the critical foundations to an active and quite healthy adult life.
This article summarizes the major expectations Mom and Dad had of me growing up. They had others, too. I could elaborate on each of these major ones, and some of the others, much more – fodder for possible future articles in this series. For now, this survey outlines, as I reflect on my life today, the ones that impacted my life, and mental, physical and emotional health the most.
Image created by Midjourney.