Rachael Lyon

Creative Nonfiction

Rachael Lyon is a poet, essayist, and translator. Her chapbook, The Normal Heart and How It Works (2011), chronicles her experience with a congenital heart defect. She received a Fulbright grant to Vienna, Austria, for her work translating poetry from German. Her most recent translation project, a tree full of pearl-gray doves (ein baum voll perlgrauer tauben) (2018), is a book-length collection of contemporary poetry by Irmgard Löschner. Her poems have appeared in Crab Orchard Review, Hayden’s Ferry Review, Southern Review, and elsewhere. She lives in Pennsylvania with her husband, son, and dog and teaches writing at Penn State.


For the Hole in My Heart

I have a hole in my heart. Again. Most people who say they have holes in their hearts are speaking metaphorically. They’ve put down a beloved dog or they’ve been dumped or they’ve lost a mother or a friend to breast cancer. All of these things and millions more leave holes in our emotional centers. I have my own holes—my own spaces that are empty of the people who once filled them.

But I’m not speaking metaphorically here. I have a hole in the wall of my heart, the septum, that divides my two atria, the uppermost chambers of the heart, the receivers of blood—one from the body, the other from the lungs. This hole, fittingly, is called an atrial septal defect. I’ve had this hole in my heart for most of my life.

What happens, physiologically speaking, when a heart has a hole like this one, is that the blood in these two chambers gets mixed up. The blue blood that’s returning from the body—where the muscles and organs have drained it of its oxygen—sloshes over into the red blood that’s returning from the lungs. And then it’s sent, along with the red blood, back out into the body, bypassing the lungs, before it’s had a chance to acquire reddening oxygen of its own. When this happens a lot, when it happens quickly, when the hole is very big, a person can become cyanotic, meaning that they turn blue. It starts at the extremities—fingertips, toes, but also lips. Cyanosis is the slow (or quick) bluing of the body, from the outside in. It’s suffocation.

I have memories of being called out of swimming pools as a girl to get my fingertips checked. My mom or dad would kneel and take my hand, as though they meant to kiss it and pledge undying love and loyalty. They’d tilt their heads and issue a judgement: “Just ten more minutes, okay?” or “Why don’t you come sit in the sun for a while? Warm up a little.” A childhood friend once told me my mother scolded her for painting my nails blue at a sleepover. I have no memory of this. I guess my mother’s fear was that she might not be able to tell with accuracy if my blood was oxygenated enough.

The thing to do, obviously, is to close the hole. Seal it up. But in my case, it’s complicated, because in addition to the hole between my atria, I also have a leaky valve between the two right chambers of my heart—the right atrium and the right ventricle. So that’s two holes, then. Two leaks. My blood enters my heart from my body through that right atrium, gets pumped down into my right ventricle, but not all the way. Some of the blood leaks back up into my right atrium—at the same time new blood from my body is arriving there. Over time, this can cause the right atrium to swell, like a balloon that gets filled with water and then almost emptied and then filled again, and again, and again. Over time, the balloon holds more and more water and it stretches. The balloon grows bigger and thinner until it reaches a critical moment and cannot hold any more.

It springs a leak. A back door, leading to (you guessed it) the left atrium. About fifty percent of people who have the same malformed, leaky valve between their right atrium and right ventricle—a condition known as Ebstein's anomaly—also have an atrial septal defect. It’s like the heart’s way of alleviating the pressure. A failsafe.

People like to say they hate going to the doctor. Some have described to me the varying degrees of negative reactions they have to the cold, clinical fluorescent lighting, the smell of antiseptic, the squeaky-clean linoleum floors of hospitals. They regale me with stories of quack doctors and cranky check-in counter attendants and phlebotomists who couldn’t find a vein and left their inner elbows bruised for days. And sure, I’ve had some less-than-positive interactions. But by and large, when my name gets called and I follow the nurse back to the weigh station, slip off my shoes and step on the scale, stand against the height chart and shuffle into a tiny exam room full of the smell of rubbing alcohol, and settle into the crinkle of white paper under my legs stretched out on the exam table, my breath comes easy. That’s saying something for someone who does not always breathe easy.

I know that there are answers here. That they will show me the footage of my last echocardiogram, on a loop, like an Instagram reel, and point to those pumping walls and say, “See here? That’s your tricuspid valve. You can see how this flap isn’t fully separated from the wall of your heart. That causes it not to close all the way.”

I feel safe here. I feel seen. I feel held. It’s a vulnerable moment when a doctor shows you pictures of your heart.

Not all the answers are good. Twelve years ago, the leak in the right side of my heart got worse. It had gone from mild-to-moderate to moderate-to-severe. My cardiologist called me ten minutes before a meeting I had with the director of the Office of Graduate Fellowships to discuss my Fulbright application to translate poetry in Vienna, Austria. He explained the escalation. Said that it was time to consider surgical options. I hung up and called my boyfriend at the time (he’s now my husband). I said I needed to share some news with him but that I couldn’t talk about it because I had a meeting in a few minutes. I just needed to get it off my chest so I wouldn’t cry in front of Dierdre when she gave me her feedback on my project proposal. He listened. He said, “Okay.” He said, “Call me when you get out of your meeting.” He said, “I love you.”

I got the Fulbright. I lost my mind with anxiety in that summer between grad school and leaving for Austria. I went to six weddings. I saw all my extended family. I drove from D.C. to Nashville to Little Rock to Michigan to Pennsylvania to Virginia to New York. I slept badly everywhere. I lost ten pounds. I bought dark sunglasses, because my pupils were constantly dilated with fear, and I couldn’t stand bright light. I ate only wet food—soups and smoothies and yogurt and cereal—because my mouth was always dry. I dreaded leaving whatever house I was staying in. I felt rootless and lonely and so very, very scared. I had one panic attack and went to the ER sure that my heart was breaking. The doctor did an EKG, showed me my normal sinus rhythm—well, normal for me—gave me a prescription for Xanax, and said I should see someone who could help. My flight was in two weeks. No one could see me.

I did the bravest thing I’ve ever done. I watched as my boyfriend cried and waved and blew me kisses while my suitcase rode the conveyor belt through security at JFK. I bought a yogurt. I took a Xanax. And I got on the plane. I made it through my year in Austria just fine. I met people, I wrote and translated poems, I befriended my landlady’s cat Schneeball and her bird Pfipsi. I drank tea she made from herbs in her garden. I got up every day and did yoga and showered and dressed and left my apartment, even when I had nowhere to go. I knew that if I stayed inside too long, the darkness, the blue-black that was lurking in the periphery, could swallow me, and I’d never get out again.

I walked to the bakery at the corner and bought brown bread, and I walked to the library and scanned their English-language book section, and I walked to my favorite café and sent emails over their wifi that I’d pretyped to my loved ones, and I occasionally forgot about the ticking time bomb in my chest and laughed and felt the sun on my face and learned to make pierogies and went to the opera and drank wine by the Danube and sat by the fountain at the Schönbrunn palace and hauled a Christmas tree home from the biergarten four blocks away.

When my boyfriend and I got married two years later, we decided it was time. I called my cardiologist and asked him to talk to me about next steps. We interviewed three surgeons—awkwardly over Skype (Zoom wasn’t a thing yet)—one at Cleveland Clinic, one at Michigan Medical, and one at the Mayo Clinic in Rochester, Minnesota. It was an easy choice. The surgeon at Mayo had performed hundreds of tricuspid valve repairs. His was the eminent technique. He had great results.

A tricuspid valve repair—and accompanying closure of the atrial septal defect—is a six-hour long, open-heart procedure. I won’t go into the details. I remember being worried in a vain way when I heard about the six-to-ten-inch scar down the center of my chest. The surgery was a success. He repaired the valve and closed the hole. I spent two days in the ICU, then two more in the PCU. I ate all the raspberry ice cups in the place and had to switch to lemon. I got out of the hospital bed and back in, under the watchful eyes and outstretched arms of the nurses who intoned things like “Take it slow” and “Are you okay?” and “Easy, easy. You’re doing great!” I took steps. I walked laps.

When I was discharged, I stayed at the Kahler Grand hotel, which is connected to the clinic and to the nearby mall through underground tunnels lined with shops. They reminded me of the network of U-Bahn tunnels beneath Vienna. I walked those tunnels—slowly, so slowly, with one hand on a railing and one hand clutching my chest—buoyed along by the Christmas music and the commuters and the clinic staff and the smell of pretzels. We were like so many red blood cells funneling our way through December.

I flew home on Christmas Eve. All the stores were closed, so my husband bought a gallon of milk from a gas station. I set an alarm to go off every six hours to take my pain meds. The surgical team had warned me to take the meds on time. “You don’t want to have to chase the pain,” they said. “Stay ahead of it.” Stay ahead of it. When I laughed or coughed or, heaven forbid, sneezed, I gripped a heart-shaped pillow to my chest hard and felt my sternum burst with pain, as though the steel wires holding my ribs closed like a spiral-bound notebook were snapping apart.

Over time, I walked more and faster. I ran a 5K and discovered that after a lifetime of wishing I could run without turning blue, I didn’t much care for running anyway. I got a dog. I bought a house. I had a baby. I lived a life that in a hundred big and small ways I could not have lived with those holes in my heart.

Now my cardiologist squints at my test results. She orders more tests. She shows me pictures of my heart, points to a phantom wisp of white on the black of the echo video. She says my oxygen saturation went down here. See? There are bubbles going through the hole again. It could be a suture come undone or the corner of a patch come loose and flapping in the current. I am devastated that she found this hole. I am grateful she found it. I am angry she found it. I am scared she found it. I laugh at the inevitability of her finding it. Of course she found it. That hole has been in my heart my whole life. My whole life. My hole life. I have a hole in my heart. I’ve never really not had a hole. I’ve never really been whole. Maybe nobody is. Maybe to be whole is not the point. The whole point. I made pierogies, I felt the sunshine. I swam in the Danube, I fed my dog. I kiss my husband’s lips again and again, I ask him to hold me, to hold me longer. I read to my child, feel his weight on my body; I laugh with abandon in the water of his laughter. I do all this with a hole in my heart. I do all this. For the hole in my heart. Still here.

In 2012, I underwent an open-heart procedure that I’d known was coming my entire life. Over the course of my recovery in the following months, I felt increasingly like a quiet, low-grade superhero. I’d climb three flights of stairs, stand at the top, and marvel at my body’s new lack of symptoms—no fatigue or breathlessness, no stopping on the landing halfway up with some pretense about an untied shoelace or an interesting flyer. Now, ten years later, my cardiologist has discovered a small relapse in symptoms; the news felt so big, my body so fragile after a decade of good health, that I wasn’t sure how to process it. So I wrote about it.