A Strange Language: How a Chronic Heart Condition Has (and Hasn’t) Changed My Life

Sometimes I’m convinced no other person will ever know my fragile heart the way I do.

It will never cease to amaze me that I owe my life to AP Statistics. We tracked our heart rates while refreshing our knowledge of averages, and mine was abnormally high. “A hundred and ten beats per minute?” my teacher said to me. “Nervous about auditions this afternoon?”

“Must be,” I replied.

Later—and I can never remember how much later, whether it was a day or a week or just a few hours—my heart began to clench. I’d always thought it was hyperbole when people said they could feel their hearts clench. But mine did. It also fluttered like a nervous hummingbird and gurgled like a child blowing bubbles in milk.

My mother took me to see my GP. He was a deeply unpleasant man, blunt and confident and rather antagonistic about my need for medical language to be decoded and softened. Looking back now, I wonder if I should have been more alarmed when, after finding out my resting heart rate had nearly doubled in less than a year, he was gentle with me for the first time in my life. “I think you should head to the emergency room,” he said. “It’ll be faster than getting an appointment with a cardiologist. It’s probably nothing, but they’ll be able to tell you for sure.”

We’d almost made our way to the elevator when a nurse pushed through the glass doors into the open-air foyer. Breathless, she shouted after us, her eyes wide and her words rushed. “Don’t take the stairs! You might die!”

*

Finding our way to a diagnosis meant months of blood draws, stress tests, and EKGs until finally doctors laced a small tube through my femoral artery and injected X-ray dye directly into my heart. Watching the video with us, Dr. Lim, the cardiologist, pointed out a small bridge of muscle over the coronary artery. “When your heart beats, it squeezes the artery shut,” he explained. “It’s called myocardial bridging. It’s rare for there to be symptoms, though. Often the first time we find it in a patient is as cause of death—in fifty-plus-year-old men. It’s a bit unusual to find it in a living seventeen-year-old girl.”

We found other problems, too: An electrical issue causes my heart to skip and bubble and flutter, but is too mild to actually receive a diagnosis. Dr. Lim went through treatment options with me, and we considered open-heart surgery to correct the problem. Vain and deeply insecure, at the time I objected mainly because I didn’t want a scar. I’d just gotten a new boyfriend! Couldn’t they understand that while he may have been willing to kiss me for the first time as I lay in the hospital bed, I could hardly expect him to stick around for years in the hopes that my scar would fade?

Incredibly, the surgery discussion was one of few health battles I won in those years, though the far more persuasive argument came from Dr. Lim. We should try medication, he suggested, before cracking open my sternum.

*

In the years since my diagnosis, I’ve slowly learned to trust my body again. I listen to it; I follow its lead. I’d never before considered the language my body speaks in, but I’ve slowly learned to connect symptoms to their causes. Hot showers make me feel faint, and my heart feels more determined, more present, when a cold is coming on. Sometimes, when I’m exhausted and have worked myself into an anxious mess, it feels as though somebody has broken off a needle in my left lung.

When everything is going well in my body, I can’t feel my heart at all. But when something begins to malfunction, I can feel and describe it with crystal clarity. A skipped beat feels like the moment at the top of a roller coaster when my body knows it’s falling, but my brain hasn’t accepted it yet. The rush to catch up is like a deep draw on a hookah, everything gurgling back into place so I can continue on slightly calmer and more relaxed.

I’ve also learned to trust my heart’s judgment. It seems to have its own opinions about the people I date, and sometimes my mind needs time to catch up. Some ex-boyfriends—the dangerous ones; the ones who are all chemistry and no stability—make it race; I feel like my heart almost pulls me to them, breathless and helpless to resist. It’s intoxicating, the way my heart bounces as I wait for them to reach out and touch me. But nervousness and instability wears on me, and eventually I find that I cannot live my life breathless. My heart needs somebody who will keep it safe.

One sunny February day, my ex and I were lying in bed and my heart began to float. I almost felt as if it would rise up and pass through my body while I lay on the bed. “My heart . . .” I said, and then panicked, unsure how to finish the sentence. What could I say to help him understand? It’s gone? I can’t feel it? He reached over and placed his hand firmly on my back. It felt as though he’d replaced my heart, the weight of his hand holding it down as it stitched itself back in. I felt myself slowly calming down. Once I was sure my heart was stable, I let him pull me to his side of the bed.

When my heart feels like a soap bubble about to burst, a hand on my back from somebody I love can keep it from disappearing. But when I struggle to breathe, when I have to lean forward and time it so I yawn and inhale at exactly the right point in my heart’s rhythm, when I must ignore the world around me and concentrate solely on my own internal universe, it hurts. It keeps my breath from coming back to me on time, keeps my lungs from expanding. It’s terrifying not to get the air you need. Even though several appointments with a cardiopulmonologist have confirmed that my lung function is actually higher than average, I frequently become convinced I am going to suffocate, my ribs and skin squeezing my lungs like a corset. That’s when panic sets in.

There is something beautiful in understanding your partner’s body, in knowing its mysteries and its signals—the chin quiver that threatens tears; the stiff fingers in your hand that mean they are annoyed; the way the sound of an inhale can tell you whether their exhale will be one of satisfaction or frustration. But there is no clear signal to warn the people I love, nothing they can feel in my pulse or the stiffness of my body to let them know to back away and let me handle things. I’ve never been able to tell them why the same gentle hand on my back can have me thanking them or yelling at them to stop touching me. And so they muddle along, always doing the wrong thing, because I can’t teach them any different. Sometimes I’m convinced that no other person will ever know my body, my fragile heart, the way I do, and that I’ll always feel alone because of it.

*

A few years ago, after nearly a decade of testing and medication and introducing myself to new cardiologists each time I moved, I went to donate blood. I’d made some lifestyle changes—on the advice of one doctor and against the advice of another—and I’d gotten more active. As a result, I was feeling better, even on days when I forgot my medication. Suddenly my bad days were few and far between, and my good days were almost normal.

The nurse took my resting heart rate and blood pressure, and I couldn’t keep myself from asking about my heart rate. At that point, I couldn’t remember the last time I’d taken medication. My last episode had been months ago. “Fifty-five,” she told me. “That’s great. Are you an athlete?”

I made my friend meet me for drinks that night. I wouldn’t tell her what we were celebrating until she arrived. As we toasted to my new resting heart rate, I couldn’t help but picture my mother’s face.

In college I’d gotten a referral to a nearby cardiologist, and my mother came along for an appointment to get some test results. The doctor said that, with proper diet, medication, and reasonable exercise, there was no reason my symptoms shouldn’t fade within a decade. She smiled at us and walked out of the room, and I turned and saw that my mom was crying.

I hugged her. She held me like she wouldn’t survive without me holding her up.

“Hey, what’s the matter, Mama?” I asked. “She said everything is going to be okay.”

“I know,” my mother said. “That’s why I’m crying.”

While my symptoms may have faded somewhat, my heart will never be “normal.” It will never cease to control my life in ways other people can’t and don’t have to imagine. But it doesn’t define me anymore. It’s no longer the first thing I tell workout buddies or boyfriends; friends can be around me for months before they notice or ask about my strange breathing habits. My heart condition is now something people discover about me, rather than something I worry they’ll need to know.

As I’ve gotten more distance from the stress of not knowing what was wrong or how to read my body’s signals, and deeper into what it actually means to live with a relatively mild yet chronic heart condition, I feel grateful that I can manage it, that I’m safe, that I can live with it at all. It’s far enough in the background that I no longer have to worry every moment; close enough to the surface that I must remember to listen. I’m still learning the strange language of my heart, and while I’m far from fluent, I feel closer to understanding it than I ever have before.