I liked school—I liked the structure of it; I thrived off the predictable rhythm and pace. The energy. I also loved that I could schedule classes only after 11:00 a.m.
The medical school had the best rooms for quiet study—the library was always crowded and too loud, despite the silence rule. There was just too much foot traffic, too many students who came and went frequently. But in the medical school, if you were studying, you were studying forhours.
It was the following weekend, Friday night. It was sorority and fraternity rush—the week all the houses on campus picked their new recruits for the year. Very few medical students entered the Greek system—there just wasn’t enough time—but still, the library was less than at capacity.
I asked Tae a question about our course. I wasn’t understanding genetic engineering.
“What is a vector used for?” I whispered to Tae.
He thumbed his notebook and then handed it to me.A vector is used to transfer genetic material into a host organism.
I copied some notes down, and studied a bullet-pointed infographic at the bottom of the page.
And that’s when I felt it. Like a fire, right across my chest.
I remember Tae turning to me, at first annoyed, maybe, that some sudden movement or sound had interrupted his flow. Then his face changed to one of concern and then something else, something I’d rarely if ever seen directed at me, not since I’d fallen off the monkey bars and broke my arm in the second grade. Fear.
The pain didn’t move, but it spread, and then it began to feel like I was suffocating, like I could not possibly figure out how to take a next breath. Tae called an ambulance. They gave me CPR in the back. They used a defibrillator. In three minutes, we were at the hospital.
They ran a lot of tests. At some point my parents showed up. I lost consciousness or was put under and then woke, and when I did, there was a team of doctors gathered in my room. I remember thinking it looked like a television show—the mix of color-coded scrubs, my father with his coffee, my mother in her glasses. Tae now somehow caught in our family drama. They couldn’t have staged it better.
And that was when they told me. The thing I must now share. The truth I’ve been avoiding. There is not just one box under my bed, there are two. One measures my life in names and units of time, the other in milligrams.
This is a box filled with prescription notes, with complex words likenitroglycerinandcaptoprilscrawled underneath ahospital insignia. There are bottles of aspirin, cholesterol medication, and diuretics, which help rid the body of sodium and water. There are lifestyle recommendations, the limits of my physical activity, no salt. There are logs of hospital stays and procedures. I even have a different name, here. In this box I am the Patient.
The truth is hard. It’s complicated. It does not always follow a simple structure. It is not always convenient. That’s why sometimes we do our best to leave it out of the story for as long as possible. We choose to let it linger in the corners, we don’t spotlight it. But eventually, it catches up to us. Of course it does.
You can run but you can’t hide.
Chapter Twenty-Four
The doctors use complicated medical jargon, words and phrases it will take me weeks to properly understand or pronounce. They tell me I have what’s called congenital heart disease, which I learn is really a catch-all forsomething is seriously wrong with your heart.It’s been there since birth but undetected until now. They tell me I had an SCA or a sudden cardiac arrest. They tell me it’s not a heart attack—it’s actually much worse. My heart stopped beating. It’s a miracle I survived, few ever do.
Then they get around to it—after the caveats and the complicated phrasing—they tell me my heart is failing.
“Why?” my mother asks.
I am a runner, I’m twenty-one years old. I have a full social life. I party a lot and I sleep little. How can my heart be failing? It’s barely even begun.
A genetic defect. No one knows why or how it happened. Neither of my parents have it, they test them.
“An anomaly,” the doctors say. Unexplainable.
From in my bed, the machines beeping, I let out a laugh. Because of course. What, did I think there was no reason? Did I think the universe didn’t want something from me in return?
I have information you don’t, I thought often. From that hospital room I could almost hear the cosmic whisper:So do I.
They told me they’d categorize my whole situation as stage two. They did not immediately tell me how many numbers there were. It will get worse, maybe even quickly, no one knows when, but it can move in only one direction. If you get to four (the final, I found out) sometimes patients need a heart transplant—but that was no picnic and these doctors, they wanted me to know that. Patients didn’t always make the list, the older and sicker they got, the harder it was, sometimes their bodies rejected the hearts, the anti-rejection medications could cause cancer—the problems went on.
My mother began to cry, my father looked like he could not remember where he’d left his keys.
Their words sounded like an avalanche—they just kept falling, burying the life I had known, had thought I knew, was maybe even planning. Limited activity, lifestyle modifications, medications, surgeries. Likely no pregnancy. The lists of all the ways in which my life would not look like everyone else’s. All the ways I now had to hold my breath, to prepare, to inhale and inhale and inhale only.
From twenty-one to twenty-three I was in and out of the hospital. I began a cocktail of medications—trial and error and error again. There were procedures, surgeries. I had an ICD pacemaker inserted. I stopped playing soccer.
Tae stayed with me through it all—until we found some stability, some combination of milligrams and devices that worked, that has worked, up until now. We didn’t break up because of my failing heart or the fact that I had to graduate remotely or the reality that Tae was in medical school in San Francisco. No, we broke up because of shitty cell service.
When I was in the hospital, Tae would come and study. He was concerned for me, but I also think he liked being in the trenches, so to speak. While other medical students were reading stories like mine in textbooks, Tae was in the hospital, getting to know the doctors, seeing things firsthand. He’d read my test results, sit in on meetings with the team. I was his lived education.
