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The Hills and Valleys in My Life With Pectus Excavatum

When I was 10 and my mom bought me my first training bra, I tried to fill the fist-sized cavity between my budding breasts with two plastic eggs’ worth of sparkly purple silly putty. It oozed down my stomach, seeped into the fabric of the bra, and hardly plumbed the depths of my mid-chest valley. Undeterred, I smuggled the hateful thing into a load of laundry, where the silly putty turned to plastic and rendered it unwearable. And so perished the first in a long line of ill-fitting undergarments.

Wild Hair and Calloused Feet

I was born with a deformity called pectus excavatum, which causes the sternum and surrounding ribs to sink in towards the spine. I noticed this peculiarity when I was 5 years old, a knobby-kneed year I spent climbing trees, hiking and roughing my bare feet in the backyard.

My hometown is snuggled into the emerald folds of the Appalachians, the quiet village tucked safe in her serene pleats. From above, the mountains look like a rumpled quilt, and from the ground, they form a security blanket around the valley. You can’t look very far in any direction without seeing a mountain, and although they isolate the tiny town, they also whisper that this valley is its own, new place.

I learned to love the land from a young age, embarking on my first backpacking trip at 5 years old. On the first day of this first adventure, my family followed a ridge two miles from my childhood home, passing through bogs of blueberry bushes, groves of mountain laurel and the skeletal remains of a forest fire. The next morning, a rain-laden storm front dragged itself across the horizon, and that afternoon, the sky burst open. The booming thunder echoed in our chests and in our fingertips, and we scrambled across the rocky ridge in search of shelter.

We could only find cell phone service under a gnarled tree, and my older brother, who was 7 years old and a precocious nerd of a thing, alternately pointed out types of clouds and waxed eloquent about the diverse dangers of standing under a tree on top of a mountain during a thunderstorm. When my mom came to rescue us, I was beaming. β€œWe saw a rattlesnake!” β€œWe made ponchos out of trash bags!” β€œWe’re wet!” This trip, for all its misadventure, is one of my happiest memories.

My Unseen Shame

I was scrawny and all elbows, but my sunken chest gave me the beer belly of a middle-aged man. It worsened as I grew, and by the summer before seventh grade, my dent extended from the top of my sternum almost to my belly button and the whole way across my chest from left to right. I spent long hours peering at my ribs and tracing the landscape of my body. I filled the bowl of my chest with bathtub water and marveled at its depths.

When I returned to school that fall, I could no longer complete the mandatory mile run in gym class. Because I also arrived late to avoid changing in the crowded locker room, my teacher concluded that I had a bad attitude and rewarded me with poor grades. The swimming unit was a special sort of adolescent torture – I was too dizzy to swim across the pool on the first day, so the instructor provided me with a child-size Mickey Mouse life vest that hid my chest but not my humiliation.

The burden of trying to keep my secret wore at me like a river shaping its banks. My body felt foreign to me, like I’d been molded into a shape that wasn’t my own, and I was certain I was the only person in the world to feel like this. It was a time of terrible loneliness and longing.

I also didn’t have access to quality information about the condition. My parents knew I’d been born with it, but they had no idea how severe it had become, and when my pediatrician didn’t bring it up at my annual check-ups, I deferred to his expertise. If he didn’t mention it, could it really be a problem?

As the dent worsened, my stamina continued to decline. I fainted rising from the bathtub and struggled climbing stairs. Gone was the adventurous Girl Scout who was up for anything, and in her place was an anxious introvert with contingency plan upon contingency plan for not being found out.

Small and Not Too Courageous

I lost my childhood love of hiking on a high school trip to Virginia. I expected the trek to be unpleasant, but I was caught off guard by the steepness of the trail. Midway up the mountain, I suddenly found myself attached to an oak tree, my arms and legs like ivy twined around its trunk. I remember my friends peeling my fingers from the bark, lifting my body from the ground, and I remember trying to explain to them that I cannot, cannot climb this mountain, but I was deafened by the rushing of blood in my ears and couldn’t form the words to tell them so. I remember my vision fading as I was half-dragged, half-carried to the summit, where I sat blinking and silent in the too-bright sun, and I remember a dizzy retreat to a shaded cave, where I threw up, fainted and wiped my mouth.

The trail gains 1,650 feet in elevation over 1.5 miles, and in hindsight, I’m shocked I made it to the top at all. I climbed the mountain, but it felt like a crushing defeat: I was completely misunderstood by my closest friends, and I felt it was my fault.

I finally reached my breaking point during my freshman year of college. I was sick of feeling sorry for myself and sick of hiding. What if my condition wasn’t actually so bad? What if I was the only one who cared? Over spring break, I gathered my courage, put on a swimsuit and went to the beach with a friend. Though I silently begged her to say something, she never mentioned my chest. The other beachgoers pointed and stared. I fought to keep my head up and my shoulders back. I had my answer.

Maybe one day I could accept my body with all its uniqueness, but I believed I would never love it. I believed I would never feel whole or unbroken, or let myself be vulnerable enough to take pride in my “abnormality.” If I married, I would imagine that my spouse resented me for my body, and if I had children, I feared I could not teach them to love their own bodies. Surgery seemed like the best option.

How to Heal a “Broken” Body

I was not so irrational as to think I could hide such a surgery from my family, but I was so scared to tell my mom that I sent her a text. It only takes one moment of courage to press the send button, and that was all the courage I had. This is a brave thing, I told myself.

We traveled hours to see a specialist, who determined that the distance between my spine and sternum was only 33 millimeters – the width of two fingers or a slightly shrunken golf ball – and my dent was to blame for my recurrent chest infections and inability to exercise.

The severity of my case made me a novelty item at the teaching hospital. Students marched through the examining room to inspect what I considered my grotesque anatomy, and I went from showing no one to showing what felt like hundreds of curious spectators. The doctors, unaware, were confirming my fears that my body belonged in a freak show. I would watch their faces while they examined me, mouths invariably falling open as their eyes flicked over my chest. Some sighed, and their pitying looks made my fingers curl with anger. My heartbeat was difficult to find, so one nurse squealed in laughter, β€œShe doesn’t have a pulse!”

Worst of all, this first appointment happened to fall on camera training day, and I was arranged bare-chested, cheeks-blazing against a wall as nurse after nurse photographed my naked body. I was an animal in the zoo, a piece of meat on the butcher’s block, the subject of some bizarre fetish smut. I surrendered my autonomy because I didn’t know how to say no.

I also think the surgeons misunderstood me when I asked them to fix my body, because what I wanted was to never have had pectus excavatum, and what they gave me was a foot of scars, two rows of titanium plates, and a partially corrected dent. The first surgery used a curved metal bar to pry up my sternum and required a long recovery period. Six months later, my surgeon advised me to expand my lungs with aerobic exercises. Now that my heart wasn’t smooshed, I should be able to run as I please, he said.

I modestly chose a Couch-to-5K jogging program, thinking that the gradual increase in intensity was appropriate for my sedentary body. Week one: Jog 60 seconds, walk 90 seconds. Week two: Jog 90 seconds, walk two minutes. Week three, however, proved to be too difficult for me, and I repeated week two for weeks. I felt like the surgeon had lied to me, and I was livid. My temper fueled my stubbornness and convinced me that my only limit was in my mind. It’s called working out for a reason, I told myself one night. It’s supposed to be hard, as I kept running. You are lazy. My hands and feet began to go numb. You are weak. I remembered my middle school gym class shame. Everyone feels like this. My nose started to bleed. Pathetic. I completed exactly one mile, stepped off the treadmill and immediately fainted.

How to Heal a “Broken” Mind

A few years later, a second surgery failed to improve my ability to exercise, and I was eventually diagnosed with a second disorder called dysautonomia. I’d probably had it all along, disguised by the unrelated dent in my chest. I’ve tried a number of treatments, but nothing really helps my symptoms that much, and it’s too exhausting to keep hoping the next doctor or the next treatment will cure me.

I’m 25 now, and all I feel is tired. My body is tired, and I’m tired of fighting my body. It seems like this “broken” body is mine to keep, and acceptance its only cure.

My mind, on the other hand, is healing.

I still don’t like to talk about having pectus excavatum, but I do it anyway. Since the name is better suited to a Harry Potter curse than a medical condition, the burden always falls on me to explain it to my family and friends. And when their eyes search my body for evidence, I try not to flinch under their gaze.

I don’t know how to reply when people tell me about their physical accomplishments, either. β€œI spent last summer hiking across the country to raise money for my favorite charity, and it totally changed me as a person.” Oh. β€œDon’t you just hate it when people don’t re-rack the weights?” To be honest, I don’t even know what that means. So I nod and I shrug and I smile and I sigh, hoping my ignorance will mask my jealousy.

I’m not always very brave, and sometimes I can’t do the things that scare me, even when I try my best. I don’t like admitting when I’m too tired to cook or clean or shop for groceries, and I don’t like asking for help. I’d sooner seem eccentric than weak, and I’d rather say I’m lazy than admit that I can’t do something. But I’m worlds away from the terrified 19-year-old who held back tears at the beach, and I know in another five years, I’ll be a new person altogether.

A Little Taste of Triumph

A couple of years ago, I climbed a small mountain. Its ridge is long, flat and meandering, and its silhouette has the curving slope of a sandstone camel dozing moss-covered at the edge of the narrow valley. The geological features of the mountain are conspicuously unexceptional to outsiders. During a site visit to determine its conservation value, a biologist from the Nature Conservancy noted, β€œI haven’t been able to find any unique fauna or flora. In fact, there’s nothing unique to this mountain whatsoever. It’s not an exceptional mountain in any way.” Still, the organization recommended preserving the ordinary hill.

I saw this ordinary hill every day for 18 years, but I’d never climbed it. The vertical rise is only 600 feet, and while I thought I could probably make it, I was scared. It seemed too dangerous for me to hike alone and too embarrassing for me to hike with friends. But the mountain bid me come, and I heard her. So I invited a friend from college to make the hike with me, and as a runner overtook us from behind, I smiled. This is a brave thing, I told myself.

Getty image by Sean Pavone Photo.