Bodies, bellies, fatigue and joy
Stuff that made me stop, think and feel differently about my unpredictable heart this summer
Welcome! This is The Heart Dialogues, a free newsletter for people born with heart conditions (and the people who care about them). Join this community by adding your email below. Every other week, you’ll get an edition in your inbox with candid conversations, essays, links, recommendations, reader threads and other good stuff about what it’s really like to live with a weird and special heart.
If you’re like me, one of the pleasures of summer is finding a quiet spot outside, someplace where you can look up at leafy branches swaying against a clear sky, and reading something you get lost in. (Even amidst the sweltering heat.)
The six pieces below all made me stop, ruminate, adjust my thinking. While they don’t deal explicitly with congenital heart disease, they cover topics—chronic illness, the meaning of fatigue, the benefits of exercise and the plain old fact of existing in a body, among other things—that brought to my mind the experience of living with an unpredictable and special heart. In these waning days of August, I hope they do the same for you.
Happy reading!
Before a recent cardiac procedure, I met a woman who said she’d been in Afib for seven months—that is, she’d been experiencing a potentially dangerous arrhythmia called atrial fibrillation for over half a year. Her doctors had finally convinced her to get an ablation. This would never happen to me. I am keenly attuned to every irregular heartbeat, every moment my heart speeds up or slows down. So I was interested to read this New Yorker piece by Jessica Wapner on the nuances of interoception, or “our ability to feel what’s happening inside our bodies.”
Science writer Ed Yong made a name for himself (and won a Pulitzer) during the pandemic with his compassionate and urgent reporting on Covid-19 in The Atlantic. Though he’s since left the magazine, this piece on the realities of fatigue—and how it differs from being tired—continues in the same vein. “It takes so much self-control and strength to do less, to be less,” one woman who has long Covid told Yong, “to shrink your life down to one or two small things from which you try to extract joy in order to survive.” Oof.
Not everyone with a congenital heart condition can exercise safely, and no one is obligated to work out. You are not a worthier human because you go to the gym. For those who do exercise, however, consider this essay I wrote recently for The Wall Street Journal a sign to discard weight loss as a goal. Move because you love it, because it helps your heart, because you make friends, because it eases the chore of carrying groceries. Don’t try to shrink your body. (PS: Science agrees.)
“The Retrievals,” a new podcast from the team behind “Serial,” tells the story of the dozens of patients at the Yale Fertility Center who unknowingly underwent egg retrieval procedures without painkillers because a nurse was stealing fentanyl from the clinic. It is also an exploration of the ways in which women’s pain is diminished and disbelieved. If you’ve ever struggled to advocate for yourself at the doctor’s, you might see yourself in this series.
Virgie Tovar, an author and expert on ending weight-based discrimination, decided not to become a biological parent earlier this year. She wrote that the move brought her relief, joy, grief, loss. (I made the same decision many years ago.) The pregnancy-style photo shoot she did to celebrate her decision (and her fat belly) brought me a lot of joy—and it might for other folks with CHD who won’t have biological children.
Hearing the whooshing throb of my heartbeat during an echo has always freaked me out a little bit. That said, I’ve had so many of the heart ultrasounds I’ve grown immune to the wonder of them. This New York Times essay by B.D. McClay speaks to the limits—and curious banality—of medical imaging. “From my CT scan, I expected a brush with mortality—the opportunity to see the forbidden land of my own guts, to contemplate their eventual decomposition,” she writes. “...What I saw instead was just shades of gray and blobs of darkness.”
As always, let me know what you think by leaving a comment or emailing me at theheartdialogues@substack.com.
Leigh, your newsletters are wonderful & critically important in keeping CHD patients of all ages engaged.