6 essays about living with a heart condition
6 essays about living with a heart condition
From meeting the women who sew bioprosthetic heart valves to the wrenching reality of transplantation
Hello! I’m Leigh Kamping-Carder, and this is The Heart Dialogues, the newsletter for people born with heart conditions (and the people who love them). Every other week, I bring you a candid conversation with someone who has congenital heart disease, plus occasional essays, links, recommendations and other good stuff about living with a wonky heart. Add your email to join this community and ensure you don’t miss the next edition.
If you start looking for them, you’ll find them. The internet is full of stories of people with congenital heart disease. Most of them, however, follow one of a few formulas: A kid gets a scary diagnosis and a family raises funds for medical care; a student athlete overcomes a surgery and finishes a race; a woman has a healthy baby despite the problems with her heart.
These are uncomplicated stories of triumph, small slices of people’s lives with a beginning, middle and happy ending, often put together by journalists with little knowledge of the complexities of congenital heart conditions. It’s important to tell and share these stories. I don’t want to belittle them or suggest anyone shouldn’t be proud to be a part of them. But I also don’t want them to be the only kinds of stories people hear about those of us who were born with heart issues. (Hence, this newsletter.)
This week, instead of interviewing one person, I’m bringing you essays by five writers who’ve tackled this topic in different ways, plus my own recent piece in The Wall Street Journal. These are complicated, bittersweet tales that might leave you with more questions than answers. They are all pieces that spoke to me and made me feel less alone (and jealous of their authors’ writing chops!).
OK, on to the essays….
My Heart Defect Was Repaired by Age 4. But Was I Cured?
Many of you are here because you read my essay about my heart defect, which ran yesterday in the WSJ. (Hi to the newcomers! 👋) That one took a couple of weeks of revisions—mostly wrangling it down to fit on the page—but, really, it took a few years for me to get to a place of acceptance with my health issues and then some months more to feel confident enough to write about them and share that with the world. As always, you can comment on any post or reply to any newsletter to send me your thoughts directly. I love hearing from you all.
Looking Inside My Heart
Jen Hyde is a Los Angeles-based writer born with tetralogy of Fallot, and one of the two women behind The Slice, a podcast about work, life and the transformative growth of parenting. In this piece from Longreads, she explores her experience of visiting the California facility where Edwards Lifesciences makes the bioprosthetic heart valve found in her own heart. She breaks bread with the technicians—many of them former seamstresses and, like her Chinese Indonesian mother, women who immigrated to the U.S.—who assemble the valves. It’s a gorgeous essay about food, family and heritage, as well as a very cool look into the extreme precision involved in the manufacture of these devices.
My Transplanted Heart and I Will Die Soon
While Amy Silverstein, author of the memoirs “Sick Girl” and “My Glory Was I Had Such Friends,” doesn’t specify whether her heart issues are congenital or not, this recent New York Times essay will probably hit close to home for many CHD folks. Silverstein, the recipient of two donor hearts, takes aim at the need for more effective medicines and lack of medical progress when it comes to transplantation.
“Because a transplant begins with the overwhelming gift of a donor organ that brings you back from the brink of death, the entirety of a patient’s experience from that day forward is cast as a ‘miracle.’ And who doesn’t love a good miracle story? But this narrative discourages transplant recipients from talking freely about the real problems we face and the compromising and life-threatening side effects of the medicines we must take.”
This essay is a punch in the gut, both for Silverstein’s own story and her advocacy message. Have tissues handy.
A Strange Language: How a Chronic Heart Condition Has (and Hasn’t) Changed My Life
Most of the people I’ve met in the CHD community knew that something was wrong from a young age, in many cases before their brain started to record memories. It’s all they know. Not so for Sarah Gundle, who wrote about how she was ultimately diagnosed with myocardial bridging after a serendipitous AP Statistics class required students to track their heart rates. Later, she writes:
“[M]y 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?””
The essay was published in 2017, in the late, great literary magazine Catapult.
Toward a phenomenology of congenital illness: a case of single-ventricle heart disease
Pat McConville’s 2021 paper articulates something we might all know instinctively—that congenital illness is not like other illness, since there is no healthy version of a person or body to use as a comparison. McConville, an Australia-based philosopher and bioethicist, tells his own story of being a Fontan patient, including undergoing open heart surgery in early adulthood and having six thromboembolic strokes. This is a scholarly article but surprisingly accessible, and I loved insights like this:
“Congenital illnesses command a pervasive but ambiguous attention to body. Living with a Fontan circulation, its demands, its restrictions and its scars entails a heightened awareness of one’s embodiment.”
And:
“Where acquired illness resets the conditions of a person’s life, congenital illness prefigures them. An appreciation of these conditions is not so much disruption as confirmation; not a trespass on but more a reminder of one’s authentic biography.”
This one is behind a paywall in an academic journal, but reply to this newsletter if you’re interested in reading more.
“I was born with a life-threatening heart condition, but it was medical trauma that left the deepest scars”
At 11 days old, Liza Morton was fitted with a cardiac pacemaker—what she describes as a world first back in 1978. The co-author with Tracy Livecchi of “Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease,” Morton tells the story of the “layers of medical trauma” she experienced, from the relentless tests and pacemaker adjustments to the flashbacks and dissociation. But this is also a story of how she became a psychologist, wife and mother, and how she learned to “take care of the little girl with the heart condition, fundamental to who I am.”
What are your favorite pieces of writing about heart stuff?
I'm so happy to have come across this Substack. I am awaiting the results of genetic testing for an inherited heart condition called familial hypercholesterolemia and wrote a bit about it a few weeks back: https://lindsayjohnstone.substack.com/p/what-now-well-armed-for-pushing-40
Looking forward to diving into this collection ❤️