The first time I held a violin was in Seoul, Korea, in a shaggy music academy full of kids squeaking their miniature violins and cellos. While the teachers coaxed my parents into enrolling me, I awkwardly scraped the bow across the strings, filled with glee that only a five-year-old could feel.
I was born in the U.S. with reddish patches on my skin that doctors told my parents were signs of atopic dermatitis. “Don’t worry,” they assured, “it’s quite common and goes away by early teens.” There is no cure, only steroid cream that temporarily relieves the inflammations. With the medications, rashes went away too soon to raise much alarm, and my childhood self cared little about the minor irritations. I just wanted to show off to my friends the unusual scars that I have accumulated over the years.
One summer in high school, while on a family visit back in Korea, my skin flared up violently all over the body, becoming reddened and swollen dry scales that looked like terrible sunburn. Yellowish serum oozed from every pore, staining everything that touched my skin. Moving even the slightest bit felt as if my skin were about to rip open from stretching too thin, and even the strongest steroids had little effect on the immune system that had built tolerance over years of repeated use. My frightened parents tried everything from holistic medicine to experimental chemical treatment through countless doctors, but the widely different methods only wore me down and in some cases worsened the symptoms. Even after suffering so much pain and dealing with doctors who insisted that their methods would eventually work, I was left with many conflicting diagnoses. We could only gather from a basket of opinions that I had some kind of deficient immune system that continuously attacked my skin, without a specific trigger or irritant. It was not until August, when I thought I could not go back to school, that I started to heal very slowly. Thin, weak, and embarrassed of my unsightly cracked skin, I wore long sleeves and pants everywhere in the late summer heat and into the fall. My health had not been the same since. I had relapses to severe flare-ups, and each time I resorted to constant medication and isolation from the world for days to weeks at a time. I fell into depression out of frustration that no one could tell me what was wrong, and feared that this unpredictability and unbearable pain were going to follow me for the rest of my life.
Tchaikovsky’s Violin Concerto in D Major is my dad’s favorite piece out of his eclectic classical music collection. I first heard it when I was in bed during another flare-up, while he played the record to keep me company. As I admired such grace and technique in Jacsha Heifetz’s performance, I saw tears streaming down my dad face. I learned then that he had severe inflammatory arthritis when he was my age, and how he thinks I inherited the disease in a much more painful form. “I’m so sorry, son,” he repeated, “I’m sorry.”
After I recovered once again, I picked up the dusty violin that sat neglected since the first time I fell ill. Tired of the depression, confinement, and this untreatable disease crippling me at whim, I finally got the urge to do something about it. The Concerto in D Major was much more difficult that I had expected. Even my violin instructor refused to skip that far ahead my skill level back then. I hardly knew where to begin, but such strong resolve that I had never felt before compelled me to keep going. I told myself, “By the time I can play this piece, I will have control over my own body. This is a journey, and I won’t quit until I reach the end.”
As I progressed measure by measure each day, I gathered and combed through every resource I could find on immune system and skin disorders. Studying the record of the treatments I had gone through, I used the plethora of information to draft and follow a lifestyle that suited my body, one that moved away from reliance on heavy medication. There were mistakes and setbacks that threatened to pull me back to the starting point, but my faith and family kept me resilient and resolute. In between the schoolwork and activities, I took small steps to not only improve my health, but also promote an overall physical and spiritual well-being.
The healing was a long, arduous process that took most of my high school years. Physical training to strengthen the body strained my raw and chapped skin, diet limited to raw organic food was unappetizing to adolescent taste buds, the spiritual exercise through meditation required more mental capacity than I had, Tchaikovsky used notations I had never seen before, and academics took up more and more time year after year. The strict lifestyle and diet robbed me of a normal high school student’s life, and I wanted to quit day after day. I broke down often and blamed everyone else for my condition, asking what I did to deserve such terrible fate. But I forced my way through, for others and myself, and to gain control of my own body and life.
After what seemed like decades, my personal struggle culminated in healed skin and outbreaks that were now rare and under control. I graduated at the top of my class, as editor-in-chief of the newspaper and concertmaster of orchestra, and a week before graduation, I performed Violin Concerto in D Major in New York City’s Carnegie Hall, honored as one of the youngest soloist to perform Tchaikovsky’s masterpiece. When I took the final bow, my dad was the last person still standing, wiping his tears and clapping as hard as he could.
As prolonged and painful as my journey seems, my struggles are incomparable to Rhio O’Connor’s fight against mesothelioma. His prognosis, a rare cancerous growth on the outer lining of internal organs that would eventually kill him, was much more dire and serious than my immune deficiency. Given less than a year left to live by doctors, without the options of chemotherapy or surgery, most others would simply follow instructions to organize their affairs. However, Rhio did not quit, and I can relate to his curiously powerful will to live. His efforts were much more intensive, but we both conducted our own research, found solutions outside of traditional medicine, and were determined to not give in to our respective illnesses.
From Rhio’s inspiring story and my struggles, I learned that there is much more to healing the body than drugs and surgery. The human mind has extraordinary forces yet to be understood by modern medicine, and I believe that no significant progress can be made without first studying the delicate relationship between the physical and the spiritual. In today’s world of comfort and convenience, people find it difficult to believe that there is no single, comprehensive cure for everyone, because one body is vastly different from another in many unknown ways. To overcome such illness, one must do exactly as Rhio did: become educated on all interpretation of the illness, understand one’s own body physically and spiritually, and find a lifestyle cure that takes time and dedication, not an instant cure.
My own experience fighting for my body was unpleasant, but it has taught me strength, resolve, and determination to not give up under any circumstances, to believe that nothing worth fighting for is comfortable or convenient. Today, this is the very attitude I take towards everything in life. I am truly blessed to have only had a non-life-threatening condition, and thankful that I eventually found healing. Although a few rare flare-ups have interrupted my academics and activities in college, I have come to accept as part of my life and strive harder to make up for the inconvenience. I still play Tchaikovsky now and then to remind myself of the strength I have to achieve my goals. Living a normal life seemed unlikely before, but now with a healthy body, mind, and a passion for getting the most out of my life as possible, I am more than excited to follow the challenging path that awaits me in both career and academics.
By: Jeon, Roland J.