“Andrew, pass the ball!”
“You come take it from me!”
Shrieks of childish laughter floated up to my bedroom, where I sat reading The Magic School Bus: Inside the Human Body for what seemed like the hundredth time. I peered out my window to see three boys my age chasing one another in the field next to my house, screaming with impish delight as the glowing sun watched over them. A familiar sadness welled up inside me as I longed to run with them. As I lay in bed fidgeting with anxiety, I felt claustrophobic, not because of the confines of my dinosaur decorated room but rather from the isolation I felt in my nine-year-old mind.
Staring down at Ms. Frizzle’s daring grin, I resolved that I should be allowed to, no, deserved to have fun. I marched up to my mother and demanded she let me play outside.
Her face fell. “Varun, you know you can’t play, not with your heart condition.”
Rats! My plans had been foiled, but my determination to break free was unwavering. “Fine … then, I want to go to the library for a new book!”
“Sure, sweetie.”
Small victories are better than none.
Persian philosopher Rumi wrote, “The garden of the world has no limits, except in your mind.” Unfortunately, as a child, I was cloistered away from my garden, locked in a sunless fallow plot that contained me and my cherished books, fenced in by disease-driven solitude. I grew up with a heart condition known as Wolff-Parkinson-White Syndrome, a condition defined by the presence of a pesky extra electrical pathway that when activated could dramatically increase my heart rate to a dangerous level. At the behest of my doctors who urged my parents to restrict my physical activity, my parents became ridiculously overprotective and essentially consigned me to house arrest out of fear of triggering my condition. Whereas most of the other kids on my block would race outside to play after school, I would sequester myself to my room to tackle the mountain of extra homework my parents had printed off for me to do. “Work hard for 20 years and relax for the rest,” my parents would always insist.
At the end of my troubles, though, I would always be able to find solace in my books — albeit only ones that had some relation to science or math. Whether awestruck by stories like Your Fantastic Elastic Brain! or absorbed by books like The First Human Body Encyclopedia (a book that is admittedly still among my favorites), I felt free when I was reading my books. It was as if someone had given me the key to my garden’s gate but then took it back when I closed my book. I found a way to diminish my solitude and sense of imprisonment — at least for a while — and know freedom.
Slowly, I grew more confident, finding friendship beyond the pages of books. As my courage grew, thoughts about my condition retreated to the back of my mind. My parents would watch and sip tea on the porch as my friends and I spent our summer nights chasing after lightning bugs with reckless abandon with my metaphorical keys jingling around in my pocket. I loved to cup them in my hands and feel them flitter against my palms as they tried to escape. Much to my chagrin, my dad always made me let them go. Perhaps, he saw the cruel irony of having a former prisoner act as a jailor.
One spring afternoon, after a particularly strenuous hour of dodgeball in PE, I felt my heart starting to pound as I walked back to class from the bathroom. I was the last of my team standing, a four-foot-tall titan against a horde of invaders, dodging assaults, and dealing out punishments. I slowed down, gulped down a sip of water from the fountain, and cautiously put my finger to my neck to read my pulse. Immediately, my vision narrowed and my view gave way to a field of dancing colors. I gasped for air and began to stumble, feeling weak in the knees and struggling for some semblance of balance. Fortunately, a teacher was turning the corner. I made eye contact, trying to communicate my helplessness through my eyes, as I fell face forward into the hard tile.
When I arrived at the cold examination table in the nurse’s office, my pulse was racing, my heart about to leap out onto the floor. It felt like a freshly caught fish was thrashing about in my chest, desperate to break free from its cage. Feebly, I attempted to sit up but simply could not find the energy to do so. Every breath was shallow and hellish. Dread and confusion filled me as the nurse bolted about the room, shrieking into the telephone as my teacher sat by my side, applying a cold compress to my forehead. The colors invaded my vision again and my head crashed back down onto the examination table.
Slowly, I opened my eyes as I woke up again in the nurse’s office. My heart rate now felt fine, but it beat strongly and slowly. My clothes were soaked in sweat, and my lungs heaved as if I had just broken the record for the youngest person to ever finish a marathon. My parents stood over me with anguished faces. Not knowing what to say, I mumbled, “I’m sorry.” All I could think about was how terrible it was going to feel not being able to run and play with my new friends. I was so afraid of being holed up in my room again. At the grizzled age of 10 years old, I was entirely prepared to change my life and become a kid I knew I could become.
Sensing my anguish and wanting me to live an unburdened life, my parents decided to work with our family cardiologist to pursue treatment with one of his colleagues to cure my ailment. The next month I was being prepped for surgery at the Children’s Hospital of Philadelphia. After discussing with both my cardiologist and his colleague at the hospital, my parents had decided that getting the surgery as quickly as possible was of the utmost importance, lest my heart flies into another panicked rage. Leading up to the procedure, my family frequently met with my surgeon. He made me feel at ease with the process — after all, explaining to a fourth grader that he is about to have invasive heart surgery is no small thing — and answered the questions that my faithful books had prepared me with.
So much of the day of my surgery invigorated and excited me. We woke up in the early morning to check-in. I giggled when they gave me an open-back gown to wear, both shocked and bemused by the chance that anyone might see my butt hanging out of the opening in the back. The preparation process felt more like a vacation at a luxury hotel than a day at the hospital. Every three hours, volunteers would bring me long menus of food that the hospital chefs could prepare specially for me. My dad and I debated for a while on the merits of getting a watermelon milkshake versus the classic chocolate (I eventually settled on watermelon to go along with my rainbow macaroni and cheese). I even had a TV set wheeled in front of my bed, complete with a GameCube and my favorite game — MarioKart Double Dash.
I was truly living the life of a prince — albeit one who would be going under anesthesia within a few hours. Everything was so new to me. After being constantly told “no” for years by my loving parents who were so cautious with me, the unlimited freedom of literally being able to run around a huge hospital in a gown, armed with a full-service menu with a dizzying array of options in one hand and my trusty GameCube controller in the other, was nothing short of awe-inspiring.
Every so often a nurse or my surgeon would come to visit. Sometimes to take my vitals or update us on the estimated time of the surgery, other times to come speak to me and my nerve-wracked parents and help put them at ease. My surgeon explained the surgery to us. In a procedure that sounded eerily similar to the board game Operation, he would thread catheters through my femoral arteries and into my heart where he would zap and then carefully remove the try-hard pathway that was the root of all my troubles.
Fittingly, as the moment finally came when I was to go under, the nurse handed me a clear, sweet-smelling liquid she called silly juice. I counted backward from 10, smiling and looking at my parents’ worried faces. Their anxiety, though palpable, was by no means contagious. It was obvious to me that everything would go according to plan — it had to. I relied on the words of one Ms. Valerie Frizzle: “As I always say, always put your best foot forward and hope for the best!” Though my parents and doctors had no idea I felt this way, I knew that I would come out of this fine, and with a better life.
I awoke groggily, my parents huddled at my bedside, excited to see me awake. Exhausted, I asked them, “Where am I?” They embraced me with a fervor that only worried parents can muster. A nurse came to check on me and happily reported to me that the surgery went perfectly and that I would need to stay in the hospital for the afternoon to recover and would be able to go home that night. Tiredly, I raised my arm to give her a weak thumbs-up and an appreciative smile.
She explained to me that as the doctors had done the surgery by snaking catheters through my femoral arteries and into my heart, I would not have full use of my legs for about a week (this distressed me as I had just gotten Dance Dance Revolution for my GameCube). Tuckered out from the interaction, I felt a wave of sleepiness come over me and resolved to nap while the animated adaptation of Redwall played in the background.
About a week after my surgery, my legs had almost completely healed. I awoke early in late July, at a time when the sun had just come out so you could feel the warmth on your skin but not the sticky humidity I had grown to crave. No one in my house was awake. Gingerly, I walked down the steps of my house to the front door, curious to see if my legs could support my weight. Smiling with pride, I opened the door with no pain to take in the sights of suburbia. Surveying my green-grass kingdom, a rush of impulsivity overtook me as I walked out onto the lawn and began to pick up speed. I sprinted across the turf barefoot, joyous to have the morning air rush through my hair. My reverie went on, darting back and forth, until it was pierced by my mother’s screams to get back in the house lest I hurt myself. Beaming, I sprinted up to her for a hug and could not help but grin as she scolded me.
After the surgery, I could, at last, bolt out the door to play with Andrew and those other boys. I could run wild. I could finally be a normal kid. With my physical barriers removed, I became more confident, making new friends every day and challenging myself by forcing my parents to enroll me in a multitude of sports. Of course, I still loved to read and continue to love settling in with a good book. But now, I did not need them to feel free as I did before. Now, I felt like a prisoner who had been granted permanent amnesty, and I enjoyed every sweet second of my newfound freedom.
Image credit: Blumen is licensed under CC0 1.0.
Medical Student Contributing Writer
University of Virginia School of Medicine
Varun Jain is a student at the University of Virginia. He is interested in combining his business experience with clinical insights in order to expand access to healthcare and enhance the patient experience.
