The Unusual Ways a Heart Defect Shaped My Life

How I went from married engineer to bus-dwelling writer

Photo: Oleh_Slobodeniuk/Getty Images

A few muffled decibels of sound traveled from my chest cavity to the surface of my skin, through a stethoscope, and into the ears of a doctor, who interpreted the signal and broadcast a report.

My infant heart was making a whoosh where there should have been a thump.

Two of the three leaflets in my aortic valve were fused, impeding blood flow out of my heart. My condition, aortic stenosis, was expected to worsen as I grew older, leading to reduced aerobic capacity and possibly chest pain, fainting, or even sudden death.

I grew up making annual visits to the cardiologist for EKGs and ultrasounds (as I assumed all kids did).

I struggled to keep up with my baseball team and lagged behind on group hikes. Aerobic activity made me anxious because I associated it with trying to catch up and gasping for breath.

When I was 15, my cardiologist told me and my parents that I needed surgery. He laid out the options, and after some consideration, I agreed to the operation that seemed to have the best long-term prognosis — and the highest risk.

This open-heart surgery would swap my deformed aortic valve with my identically sized, healthy pulmonic valve, trading aortic stenosis for the less-serious pulmonic stenosis.

We scheduled the surgery for the day after Christmas. It loomed ahead of me for months.

I used to think about how strange it was that there would always come a moment when once-distant milestones were happening right now, and then they, like this current moment, would be memories. I thought about graduating high school, or falling in love, and imagined the version of myself who had already done both and come out the other side.

I also used to lie in bed, trying to match my heartbeat to the ticking of the clock, imagining the hour of my death:

Loved ones have been visiting me for weeks. We’ve said everything there is to say. They hold my hands as my frail body draws its final, shallow breaths.

My mind retraces well-worn memories. I’d love to have one more hour in the prime of my life, one more chance to soak up every moment. So much time was lost to meaningless worries and ego-filled arguments.

I am old now, and have grieved the departure of many loved ones. It seemed impossible to wrap my mind around the fact that I would never see them again. Now it’s my turn to vanish from this world and for others to grieve. Here I go…

Thinking about my death disturbed me, but I always imagined I’d at least see it coming and have time to process it.

What bothered me the most was the possibility that I might die on the operating table — sedated, completely unaware, with no chance to say goodbye.

I was young when I had my surgery, but I took measures to prepare myself for death. I dug into my Christian faith, convincing myself it would be okay if I died because I’d go to heaven and everything would be great. I wrote a goodbye letter to the world and hid it in my dresser.

On the morning of my operation, I insisted on driving my family to the hospital. I was lighthearted; I don’t know if that was for my own benefit or if I felt some responsibility to ease my parents’ fears. “Physician parking only?” I lamented. “How about a section for people who are having open-heart surgery today?” I remember how they laughed.

Family surrounded me, much as I’d imagined in my deathbed scenario. Nurses prepared me for surgery and wheeled me into the operating room. The anesthesiologist put me under, and I held onto those fading-out moments, imagining they were the end of my life, just in case.

People talk about waking up from surgery with a sense that no time has passed, wondering if it’s even begun. For me it was more like waking from a deep sleep into a confusing dream — one where I was drugged, on a respirator, and very thirsty.

I remember spending hours with an unbearable sense of crawling skin. Draining tubes were yanked out of my abdomen. My sternum and ribcage had been sawed apart and wired back together, so I was sensitive there, of course. I came home from the hospital after four days.

Most of my classmates were unaware I’d had surgery because I barely missed any school. I told some of my friends what had happened, but they couldn’t relate to my experience. I felt isolated. My winter break had been the scariest time of my life; I’d gained a perspective of death that many people don’t grasp until old age.

It almost felt like I had been put to death and resurrected.

I had seen firsthand at 15 that life was fragile, death was imminent, and suffering was real. I thought about what was important in the big picture of my future and felt my priorities change.

As someone who naturally takes things to their logical conclusion, I applied my new perspectives about death to my belief in God. After all, if our faith determines whether we experience bliss or torment for all of eternity
—as I believed it did—and since we’re all going to die eventually, what could possibly be more important than dedicating myself to the “correct” beliefs and sharing them with others?

Halfway through senior year, I started dating a girl from my AP calculus class who joined my church and went on the same mission trip I did. I think I was so attracted to her because she understood the gravity of the human condition the same way I did; we shared a passion for the things that mattered and wanted to devote our lives to God.

I was floored by the intimacy we quickly developed and became convinced that God wanted us to be together forever, which, in hindsight, might have had something more to do with my commitment to saving sex for marriage.

After high school, I went to Bible school in Europe for nine months before joining my girlfriend at university, where I majored in engineering physics. We got married when we were 20.

Soon after, however, my priorities started to change again. Despite my best efforts to hang on, my faith was slipping. I had read the whole Bible and come away with more questions than answers. Prayer felt as fruitless as talking to an imaginary friend. Theologians had plenty of answers, but I didn’t find them convincing. I slowly realized I basically would have believed in whatever religion I had been raised in, which made me wonder why I was so invested in this one.

The theories taught in my science classes, on the other hand, were observable, falsifiable, consistent, and productive. They didn’t need a worship band to stir up my emotions every week to keep me convinced of their truth.

I had always thought I had nothing to lose by believing in God, but I started to see that I was carrying a heavy burden indeed. I found Christianity restricting — keeping me from interesting experiences, and afraid of nonbelievers, who I thought had been deceived by Satan and were, therefore, going to hell. My religion encouraged and reinforced my self-image as someone fundamentally broken, in need of a savior to give my life value.

About two years after getting married, I worked up the courage to admit the dissolution of my faith and found, to my relief, that my wife had been on a similar journey of doubt. We both left religion and never looked back.

The hardest part of leaving Christianity behind was losing the promise of an eternal afterlife in heaven. Given how familiar I was with the thought of death, it had always been a source of comfort to think that life on Earth was short in comparison to our time in heaven. I didn’t quite know how else to cope with my mortality, but I felt compelled to align myself with what was true rather than what was comfortable.

With this new perspective, my time was suddenly much more valuable than I’d previously thought. All I had now was this one cosmically insignificant human lifespan.

After graduating from college, I found a good engineering job. I was earning decent money, and my wife found a nursing job that paid even better.

But I soon found that the money meant little to me.

I was spending my days in an office, characterizing semiconductor devices and making reports, but what I really wanted was the freedom to spend my time on vibrant life experiences, trying to make a difference in the world.

The promise of a stable, well-paying job seemed to be that, in exchange for giving up the majority of my time, I would be able to afford things that would make me happy. But if the thing that made me happy was free time, wasn’t spending it all at work self-defeating? What if I wanted more time and less money?

Some would say that time is money; I say that’s absurd. Time is a universal property of physics that predates us by billions of years. Money is an arbitrary system created by Homo sapiens a few thousand years ago.

The subjective value of our experience of life does not depend on some digits stored away on a bank server. But that’s exactly the way we’ve come to value life. That’s why we think it’s acceptable for wealthy people to pay pennies for the dirty work of resource extraction and manufacturing, to get cheap products to sell at a massive profit. We act like multiplying wealth is an inalienable right even if it causes social harm, mass extinction, and climate change, as though a “strong economy” somehow makes up for this long-term degradation of life. Once I saw how problematic capitalism is, I couldn’t unsee it.

I was heading down a life path that would require me to spend my days earning money to buy false security and other things I didn’t need, at the expense of what I truly wanted and found satisfying, and it bothered me.

I was also struggling in my marriage. We were best friends, but we were so young when we wed that I didn’t understand who I was or how my goals might change. Though she and I were still on the same page about religion, ethics, and politics, we came to realize that we wanted to lead different lifestyles.

In my first year of engineering, I made a New Year’s resolution to complete 52 day hikes that year because my occasional outings in the past had left me feeling happy and refreshed. Hiking helped me get the much-needed exercise I was avoiding, and multiday backpacking trips offered me access to a tranquil frame of mind I hadn’t known existed. Regular day-long hikes seemed like a reasonable commitment to my physical and mental well-being.

This was also the year when, at age 24, I had an operation to correct my pulmonic stenosis using a valve from a cow’s neck. The valve was placed on the end of a catheter, fed through a major vein near my groin all the way up to my heart, and expanded into place with a balloon at the end of the catheter. It was much better than another open-heart surgery!

A year later, though, I got sick. I had chills during the day, ran a high fever, and sweat profusely at night, which had never happened to me before. I researched the symptoms and correctly diagnosed myself with endocarditis, an infection in the inner lining of the heart. My new heart valve was infected and required six weeks of IV antibiotics to cure.

I hadn’t even been aware that I was at risk for this potentially lethal condition. Even today, everyday activities like brushing my teeth can introduce microbes to my bloodstream, which might travel to my heart and cause endocarditis if I’m unlucky — which is probably what happened. Each time it happens, it becomes more likely to recur.

There’s little I could — can — do to prevent future infections. Antibiotics might not be enough next time. Next time I might need another open-heart surgery to extract the valve, or a dislodged bacterial growth might cause a stroke, paralysis, or organ damage. Maybe I’ll die.

If my open-heart surgery and loss of faith hadn’t already taught me to appreciate life’s ephemeral nature, this new threat of disease pushed me over the edge.

I began to think about how I could experience more freedom, novelty, beauty, and meaning in my life.

I resolved that if there was something I wanted to do in my lifetime, I better do it immediately. Waiting until retirement was too risky. There was no guarantee I’d be alive and healthy by age 30, nevermind 65. I began to think about how I could experience more freedom, novelty, beauty, and meaning in my life.

One of my friends had hiked a big section of the Pacific Crest Trail, a 2,650-mile footpath between Mexico and Canada, and offhandedly suggested that I do it too. Initially, I laughed off the idea as far-fetched, but it lodged itself into my brain. And, as I continued to fall in love with backpacking, I thought about it often.

What would be the point of working all those years to build personal wealth if I never got to do what mattered most to me?

I made plans to enact my escape.

When I was 26 years old, I left my wife, quit my job, and began the Pacific Crest Trail.

The divorce was painful even though I had been wrestling with the decision for a couple of years. I knew I was losing someone special and might never find a partner like her again (I haven’t). She wanted to try to work things out. In the end, however, my yearning for autonomy overpowered my fears and outweighed my concern for what she wanted, for better or for worse.

So, I moved out, leaving her with the furniture, the dishes, the appliances, and the dog; I took my computer and most of the camping gear. I worked and lived with roommates for a few more months and pared down as much as I could before storing the rest of my things in an attic and taking a flight to the southern border with my backpack.

Once I got on the trail, I was amazed to meet all the other hikers who had come from such diverse backgrounds. We were the ones who were crazy (and fortunate) enough to live out this fantasy. It was the first time I’d only had myself to answer to. I had several months all to myself, ready to dive into a lifestyle of real adventure.

Photo courtesy of the author

My intuition had been right: This was what I needed. I had always spent a lot of time in my head, and now I had the freedom to ride all my trains of thought to their destinations. It changed my worldview, my expectations, my standards, my goals. I discovered a strong community of like-minded people.

The best thing was how my time felt so full. Days, weeks, and years start to blend together when you’re stuck in the same routine, but when each day is unpredictable and full of new stimuli, life feels expansive. I created more noteworthy memories in a week of hiking than I did in a year in the office. That was what I was after.

It was during this time that I picked up blogging — writing about my through-hike from a psychological perspective. I found writing to be fun and satisfying. I kept at it after I got home, starting blogs about other topics.

One day, I was hiking with a new friend when a thunderstorm set upon us. Lightning was striking nearby; I was cold, afraid, and completely soaked. We had a few more miles ahead of us still to find level ground to camp on. When we got there, I set up my tent as fast as my numb hands would allow, stripped off my wet clothes, got in my sleeping bag, and started to shiver myself warm as the storm continued.

“Hey, at least we’re not at work!” I shouted cheerily in the direction of my friend’s tent.

She shouted back her agreement.

I was so happy with the expansiveness of this new lifestyle that I never returned to engineering. If I learned to be frugal, I realized I could avoid a full-time job forever.

I started living in a car — a 1981 diesel VW Rabbit from which I removed the passenger seat and put in a bed. Having just lived in the wilderness for seven months with just a backpack, the tiny car made a luxurious home. It was like having a steel tent that did the hiking for me and played music, too. I’d fallen in love with a woman at a festival halfway through my hike, and we traveled the country together for a few months in our vehicles.

For three-and-a-half years, I didn’t work at all. I cashed out my 401(k) and used up all of my stored-away wealth to prolong my unemployment. I learned to be more and more frugal, at one point surviving for three months on $100 while living in a field with two motorcycle drifters.

Finally, I found myself truly, completely, and utterly broke. I might not like it, but money does make survival easier. So I got a part-time job at a restaurant in rural Utah where I could work a few months out of the year and earn enough to get by. I continued to travel, finding satisfaction in writing about my experiences, my shifting worldviews, and the new paradigms that made sense to me.

I was free to do whatever I wanted, but I still needed to figure out what, exactly, that was. What kind of enjoyable, flexible work was I was good at, and could help people by doing?

Every time I analyzed it, I kept coming back to writing. I loved trying to understand how the world works and finding the right words to describe it. Traveling would not only be feasible as a writer but would give me more creative fuel — and the only tools I needed for my craft were an old laptop and the occasional internet connection. It was the perfect intersection of flexibility, mental stimulation, and fulfillment.

I lived in the Rabbit for two or three years, and then in a minivan for about a year, before I bought the retired shuttle bus I currently call home. It cost me $2,700 and has been running strong for a year and a half. I’m still completing the build as my funds allow, but it’s been a comfortable, portable home at a fraction of the cost of normal rent, and it makes an excellent writing studio.

It took heartache — literal and metaphorical — for me to understand what I wanted in the first place.

Of course, I have to acknowledge that I enjoy a certain set of circumstances that have made this journey easier for me. My white, male, cisgender, hetero, middle-class privilege makes traveling alone safer, for one. And it’s easy to change your lifestyle when you’re an able-bodied engineer with a financial cushion and no dependents.

Yet it is also true that many of the people who’ve told me they’re envious of my lifestyle could have it if they were willing to sacrifice the same things I did. It took heartache — literal and metaphorical — for me to understand what I wanted in the first place, and then I had to make difficult choices to get where I wanted to be. No one else could’ve made those choices for me. Other people make sacrifices to center their lives around raising children or building their careers. We all have to prioritize what’s important to us.

I love my frugal and open-ended lifestyle, but not everything about it is easy. I’d probably feel less worried about my heart problem if I still had a high-paying job, a spouse, and a traditional home to act as a safety net. I recently had another infection and became depressed. In the six years since my divorce, I haven’t had a serious girlfriend. I also don’t have a shower, a toilet, heating, or air conditioning.

But all of those downsides are worth it to me because I’m moving in the direction I’m passionate about and that makes me happiest. My time is my own to use as I please; any discomfort along the way is temporary.

Sometimes, I imagine reaching across time and talking to myself in different eras of my life, as though I can create a wormhole to connect our present moments.

I visit myself as a child and say: “It’s okay, don’t worry, you’re doing your best.”

I travel forward to ask advice from myself on my deathbed: “What have you learned? What should I change? What’s most important?”

I also take care to reassure my dying self.

“I know you’d like nothing more than one more taste of your youth. Today I will be your eyes and ears, your arms and legs. I will savor this moment for you. I promise I will live a life that fills you with joyful memories.”

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