Quality of life: The heart of the matter

Quality of life: The heart of the matter

Quality of life: The heart of the matter

How my chronic disease has driven me to live more, not less, in graduate school and beyond

April 4, 2024 | Stephan S.

Mechanical Engineering

Most of the children showed off a favorite toy. Some brought items that were meaningful to their family or culture. When I got to the front of my kindergarten class, my hands were empty. “My show-and-tell is…me!” I exclaimed as I pulled up my shirt and bared my chest to an audience of shocked five-year-olds (and one shocked teacher). I explained that when I was a baby, I underwent surgery to fix a problem with my heart that was present since birth. Though I did not remember the surgery, I had a big scar on my chest where the doctors had opened me up.

This is one of my earliest memories. Even then, I defined myself in terms of my heart disease.

A death sentence, deferred

I was born with Tetralogy of Fallot, a congenital heart defect that affects 3 in 10,000 babies in the US. In another era, this would have been a death sentence: with a hole between the left and right sides of my heart, oxygenated and deoxygenated blood would mix and I would slowly turn blue due to lack of oxygen. Before a repair surgery was developed in the 1950s, 70% of people born with my defect died by the age of 10.

Luckily, I was born about 20 years after the surgery became common in infants. At 6 months old, my heart was “repaired.” This allowed me to live a relatively normal childhood, besides the occasional locker room question about the scar running down my chest (I convinced at least one gullible classmate that it was a stab wound).

Baby Stephan lies in bed, holding a stuffed animal.

An early sick day.

As I grew older, though, my heart’s performance didn’t keep up. During an exercise test when I was 19 (similar to those Gatorade commercials, except my sweat was disappointingly clear), doctors detected a dangerous heart rhythm: ventricular tachycardia. I started taking beta blockers to prevent runaway heartbeats and the next year, I underwent open heart surgery to replace my pulmonary valve.

[Me to my doctor]: So, what are we?

Everything went well during the surgery, and when I went back to Boston Children’s Hospital for my one-month follow-up visit, my cardiologist told me, “I want to make sure you don’t think of yourself as a heart patient.” Except for doing hard drugs and heavy weightlifting, both things I had previously avoided in my daily life, she told me that I could pretty much live like any other person. Sure, I had this little heart thing, but I shouldn’t let that limit what I did or how I viewed myself.

The truth is, having a chronic health condition can feel limiting. For instance, when I have to shave my chest to wear a Holter monitor for a week; when I have to run on a treadmill wearing a gas exchange mask and EKG leads; when I am jolted by a sudden palpitation while sitting at my desk; or when I am rolled into the cardiac catheterization lab to have another new heart valve inserted – at all these times, I sure feel like a heart patient. And beneath that feeling lurks something more painful: the belief that due to the body I was born into, I am destined to live a “worse” life than the average person.

Stephan, lying on a hospital bed, gives a thumbs up. His wife smiles from a seat behind him.

My wife and I having fun after my recent cardiac catheterization.

Discovering the disability paradox

It is easy for this kind of attitude to fester and grow unnoticed. I didn’t realize how easily I had adopted this negative perception until very recently, when I read a handout from the Adult Congenital Heart Association about quality of life. This document turned all my assumptions on their head, namely, “don’t people with congenital heart disease have a lower quality of life (QOL)?” Not long ago, I would have agreed with this statement. The physical limitations and constant uncertainty that a chronic disease places on someone’s life must necessarily lower its quality, right?

Not so fast! The document goes on to state, “if QOL means how satisfied a person is with their life, then congenital heart disease (CHD) patients will often have a better QOL than healthy people.” This isn’t just wishful thinking, either; multiple studies have shown just that. The phenomenon of people with major physical limitations reporting good or excellent life satisfaction is known as the disability paradox.

Stephan poses for a bathroom mirror selfie. A faux mustache stuck to the mirror is positioned so it looks like a floppy hairstyle on top of Stephan's head.

Perspective is everything. Just ask this mirror mustache.

That’s the thing: quality of life largely comes down to self-perception, context, and relationships. Sure, a chronic disease can make life feel hopeless at times. Many adults with congenital heart disease, myself included, have to work to combat anxiety and depression. But living with a serious condition can also give life clarity and meaning. From the same handout, “Many times [patients] develop different values than ‘healthy’ people as a result of growing up with CHD. As a result, many will say, ‘We know what life’s worth, [and] we don’t let the little things bother us.’”

Not a limiting label, but a meaningful motivator

Reading these words helped me to take a step back and appreciate the high quality of life I actually have, and paradoxically, how my heart condition is partly to thank for this great life quality. In fact, I highly doubt I would be at MIT right now if I didn’t have a heart condition. When I had that open heart surgery at age 20, it forced me to candidly assess my life, my values, and my goals. Before surgery, I was studying social sciences and humanities without a clear direction. After surgery, I decided to pursue engineering to help others like myself with physical limitations. Now, I am working on my PhD in biomechanics and assistive technology.

Stephan stands, arms flung out and smiling, on a rock jutting out over forested mountains.

Experiencing a high quality of life (literally) after hiking Mount Pemigewassett in the White Mountains.

I have to admit, when I first got into MIT, I was excited but scared. Could my heart stand up to the notorious intensity of engineering grad school, never mind the most intimidating engineering school in the world? Could the stress cause real, physical harm to my heart? Would I get enough sleep?

I’ve been here for a while now, and while grad school is intense, it’s doable. My heart condition can slow me down sometimes, but it also serves as a nondepletable source of motivation. Often, life can be stressful, uncertain, and scary! But, just as often, it is rewarding, beautiful, precious, and sublime.

Choose your own labels. Choose your own adventure.

You can allow the labels the world gives you to define you and hold you back. However, I bet if you take the time to list them out, the things you can do far outnumber those you can’t. Quality of life is not a given, even in perfectly able-bodied people. By focusing on how I do the things within my control — with gratitude, humor, and a sense of purpose — I’ve learned to live a “high quality” life on my own terms.  

So yes, I am a proud heart patient, but I am so much more than that. I am also a student, a researcher, a husband, a runner, a rock climber, a reader, a pianist, an improv comedian, a musical theatre nerd, a roller coaster lover, a skier and snowboarder, a coder, a cook, a cruciverbalist, a world traveler, a Jeopardy! devotee, a brother, an uncle, and a friend. Someday, I will add ‘MIT PhD graduate’ to that list. 

Stephan poses, making a goofy glasses shape with his fingers, in front of a sign reading "The source of R. Nile, Jinja, World's Longest River." The river flows behind him.

My big chest scar and a bigger river. From an Engineers Without Borders trip to Uganda that I led 4 years after my second heart surgery.

If you have found this blog and are wondering if you can handle grad school at MIT, whether or not you have a chronic condition, I am pretty sure that you can. Think about what you can do, be grateful for that, and ask yourself what you want to give back to the world. That is your key to handling the uncertainty and setbacks that you are guaranteed to face in both grad school and life.

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