Summer Ash is a self-professed space cadet. She’s an astrophysicist at Columbia University’s Department of Astronomy in New York City, where she serves as the Director of Outreach.* Five years ago, she underwent open heart surgery after she was diagnosed with an aortic aneurysm (that’s when the tissue of the aorta balloons out dangerously). This condition was likely linked to a congenital heart defect Summer was born with called a bicuspid aortic valve. About 99% of people, she explains, are born with a normal tricuspid aortic valve (meaning three leaflets in the valve), but she was one of the 1% born with only two. With her kind permission, I’m running her story here as it was originally published in 2014 on her blog, Defective Heart Girl Problems.
“I think there is a big misconception about how fast ‘young people’ heal from a surgery like this. There’s healing and then there’s HEALING. On one hand, being young and strong and in good health (with one obvious exception) means I can physically heal faster than the average open heart surgery patient.
“On the other hand, the average open heart surgery patient is much older and often in poorer health – so much so that doctors often find a less invasive way to operate on the heart: a partial-sternotomy, a thoracotomy in between the ribs, or even going in through the femoral artery, all of which are less invasive than a full sternotomy.
“My surgeon said that since I was in such good shape, he would just go the direct route. My body could clearly take it. I would ‘bounce back’.
“Turns out growing new bone between my sternum wires, reconnecting my muscles and nerves across my chest, and regaining my strength was the easy part. It’s at least straightforward. There’s a checklist of things to do: sit up, stand up, walk, walk again, and walk some more. Keep walking. It may not be linear (it most definitely was not), but at least there’s a path laid out for you. Millions of people have healed from this before. Six weeks after leaving the hospital, my surgeon declared me fixed and told me to go live my life.
“But almost two years later, I’m struggling to do just that.
“My surgery was on the books and over with well before my mind even accepted it was happening. I focused all my energy on understanding what would happen to me physically and I didn’t stop to consider what might happen to me emotionally.
“Sure I had the occasional breakdown while recovering, but it almost always stemmed from pain and fatigue and frustration. It wasn’t until six months later that the first cracks began to show while I was organizing my medical bills in preparation for filing my taxes. I had a massive envelope full of receipts and I was entering them into a spreadsheet, all out of order.
“The second after I typed the entry “taxi to hospital” for the morning of my surgery, I completely broke down. It was as if all the fear since I found out about my aneurysm had been filed away in a corner somewhere and I had just stumbled upon it. This happened a few more times and then it ended as suddenly as it began and I thought nothing more of it.
“A year later, it all resurfaced, only this time it came in waves, each one bigger than the one before. I started to have visceral reactions to things that reminded me of surgery, both directly and indirectly. I felt other people’s pain as if it were my own.
“When once I had no trouble watching medical dramas, I now actively turned away from scenes in the OR. I had to skip over the news items in my Facebook feed from the two heart surgery groups I was a member of. I started avoiding my godparents’ neighborhood on the Upper East Side where I stayed during my recovery. Every time I crossed Park Avenue, I would have a flashback to when I couldn’t make it across the intersection in one cycle of the light. Riding in a taxi only made me remember how vulnerable I felt being in a car after surgery. If I saw anyone in the subway walking with a cane, I would immediately remember how terrified I was of being jostled when I started commuting on my own again. I started feeling the need to adopt a defensive posture and protect my chest again.”
“The city became a minefield. My mind became a minefield. It was so bad at one point, even seeing the shape of a heart (anatomical or symbolic) would trigger me.
“And my bionic heartbeat morphed into the worst trigger of all: one that I couldn’t escape. It went wherever I went. It was inside of me.
“Something had to be done.
“There is nothing medically wrong with my heart so no procedure or prescription could do anything about the pounding in my chest. As an alternative, my GP suggested clinical hypnosis or biofeedback as a way to try to transform it into more of a background sensation. I had heard of biofeedback before and it piqued my scientific interest so I decided to explore that option first. That’s how I found Dr. Leah Lagos, a psychologist trained in biofeedback, who I’ve been working with since mid-March.
“Through working with Dr. Lagos, I’ve come to realize two things:
- All the of emotional and visceral reactions I mentioned above are actually symptoms of post-traumatic stress disorder (PTSD). I approached my surgery as a logical, medical necessity and focused all my energy on planning the practical steps for my recovery. I spared little or no energy for what I thought about needing to have my most vital organ repaired. My rational brain took the wheel and relegated my emotional brain to the back seat. As a result, my body, and my heart, actually experienced my surgery as trauma. Which makes a lot of sense when you think about what my body actually went through: my torso was sliced open, my sternum sawed in half, my ribs forcibly spread apart, and my heart was stopped. Yes, all these things saved my life. My rational brain knows that and accepts it. But ever since I woke up in the ICU in tremendous pain, my emotional brain (via my heart and my body) has been screaming “WTF?!” – which ties into #2…
- I’m fucking pissed at my heart for letting this happen to me.
“At first I thought my bionic heartbeat bothered me so much because it felt like something must still be wrong. Why else would it be so loud and so forceful? Surely it must be trying to tell me something. But it’s not fear it triggers, it’s anger. Really raw anger.
“When something starts going wrong in your body, you usually get some kind of clue: a twinge, a pain, a change. Something that hints at a difference. Something that tells you things aren’t quite right. Something that makes you think twice. Nothing like that occurred here. Nothing at all. My aorta was expanding and stretching to its limits and my body never said a word.
“My heart, the organ that gives me life on a moment to moment basis, lied to me. It violated my trust. When it was in grave danger it sat in silence. Now it’s perfectly healthy and it won’t shut up. I don’t know what to believe anymore. I’ve lost all physical confidence in my body.
“So that’s where things stand at the moment. The biofeedback is helping me make great strides on both these fronts, but it’s an ongoing process.”
Image credit: Ana Teresa Barboza
Q: Have you, like Summer, had the experience of “sending your emotional brain to the back seat” during a medical crisis?
NOTE FROM CAROLYN: I wrote much more about the link between heart disease and mental health issues in Chapter 5 of my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon. Or if you order it directly from my publisher, Johns Hopkins University Press (code: HTWN), you will save 20% off the list price when you order).
* Since this post was published, Summer is no longer a New Yorker. She has moved – to a new home and a new job! She’s now the Senior STEAM Education Specialist for the National Radio Astronomy Observatory in Socorro, New Mexico.