Kintsugi is the Japanese art of putting broken pottery pieces back together with gold — built on the idea that in embracing imperfections, you can create an even stronger, more beautiful piece of art. Not unlike Kintsugi, our scars have made us stronger, more beautiful. Though we all see our scars differently, they impact the unique way in which we each move through the world. Nicole Busch, explores the way in which her view of her scars changed over the different phases of her life.
CHD impacts the way I see my body. And as my CHD changes, the way I see my body changes, too.
At 7, I had my first open-heart surgery to repair my mitral valve and close a hole in my heart the size of a quarter. I was thrust into the fast-paced world of echocardiograms, anticoagulant therapy, heart surgery, post-op complications, loneliness—and illness.
Surgery was painful. Sedation was nauseating. Each time I dry heaved, my broken sternum writhed in agony. I remember taking a hard look at myself in the hospital mirror. I froze in horror and thought, “I look dead.”
My skin was so pale it was translucent. Blue veins glowed under my big, deep-set blue eyes. My wrists and ankles were so atrophied, they looked like they could shatter. A hospital gown enveloped my little-girl-body like a checkered tent.
Eventually, the scar on my chest faded from pale, pink line to tout, white uniformity that was barely visible. And because the scar healed so beautifully, I lived as a person who did not identify with having a disease. And everyone else in my world did, too.
At 19, I had my second open-heart surgery—a Mitral valve (MV) repair redo. The scar on my chest had keloided, so it looked like a thick, flattened red worm against my pallid chest. The scar itched and burned—and was the paragon of ugliness. Each day, I felt sicker and sicker, and I became resentful of the scar, of my appearance, and of the surgery. In my shame, I hid my scar by wearing oversized shirts or thick necklaces.
At 21, I had my third open-heart surgery to repair the MV with a tissue valve because the second repair had failed. 2 weeks post-op, I woke up with a 104 fever and a rash covering my entire body. For nine days, I was quarantined in two different hospitals with heart failure, fluid overload, dehydration, anemia, colitis, and internal bleeding in my back and stomach. I could not eat or drink and wore adult diapers, the smell of humiliation following me, as nurses my age helped me to the bathroom.
Three months later, I started courses at the University of Illinois Urbana-Champaign, and my body was still recovering. Each class period, I sat in the back corner, ashamed by my sickly appearance, especially in comparison to my college peers, who were beautiful and healthy. My skin was so dehydrated, it looked like the color of canned tuna. My deep-set eyes were so sunken in, they looked like someone had pushed them back into my skull. Clumps of hair would fall out in the shower until ¾ of my hair was gone, the stress of the surgery and post-op complications causing telogen effluvium. School—what started off as my reprieve—became a place I felt worse about myself because I could not get past the comparison. My illness had eroded my femininity, stole my radiance and youth. Each time I looked into a mirror pained eyes looked back at me. I looked as sick as I felt, and I could not hide it.
At 24, I had my first ischemic stroke.
At 26, I had my fourth open-heart surgery, a mitral valve replacement with a titanium valve, because the tissue valve had failed from stenosis. Post-op my lung was bleeding internally then it collapsed. 4 months later, I had a TIA while walking at a park.
At 31, I had four ischemic strokes, scattered bleeding in the brain, and was diagnosed with Antiphospholipid antibody syndrome and obstructive sleep apnea.
Today, five months post-recent strokes, my body feels laden with the weight of my diagnoses and the accumulation of medical trauma. CHD did not just take a toll on my body image; it took a toll on how I feel inside my body every day.
But this body that has been traumatized, marred, broken, fused back together, ashamed, on the brink of death, is the same body that has also been soothed by human touch, lulled by love, experienced the rapture of an orgasm, fulfilled by work, earned a graduate degree, laughed, learned, traveled—and survived.
So when I struggle with comparing my body to others, especially to those who do not bear the scars I bear, I remind myself that nothing is more beautiful than the hard-earned perseverance of CHD.