“I am a world class pianist living with a rare disease”

According to my parents, when I was six months old, I had a grand mal seizure. I was in my grandmother’s arms and I turned blue. After that I started having infantile spasms (IS). My first was at Disneyland during the Main Street Electric Parade. My mom saw me do these weird movements and was terrified.

My parents then took me to the hospital for an MRI, but initially they were told the MRI was completely normal. Luckily, there was a doctor who then contacted my parents in the middle of the night to tell them that she had diagnosed my condition with Tuberous Sclerosis of Bourneville (TSC), a rare genetic condition that causes benign tumors to grow in the body. body. She explained to them that I also had infantile spasms.

I was then fortunate enough to be part of a UCLA clinical trial for a new drug at the time, which completely stopped my infantile spasms. My parents were also able to get advice on how to support me with the TSC Alliance. However, my TSC caused developmental delay which meant I couldn’t speak and had difficulty sitting and crawling.

One of my earliest memories is when I was about three years old, I was in occupational therapy and was trying to sit up, and the therapist asked me to extend my arm, turn my palm over, and shake a red ball. But I was still trying to figure out how to sit, so I couldn’t do it, and I couldn’t speak to explain, because of my speech delay, I didn’t know how.

I was taking speech therapy, occupational therapy, and physiotherapy but wasn’t really improving so my mom decided to try piano lessons. When I was four, she hired five different piano teachers to tutor me. Each brought different perspectives and teaching styles to maximize my development. I had these five teachers until I was 10, along with other therapists who came to the house to help me outside of piano work.

At the age of 5, I functioned like a 2 year old in many ways; my developmental delays meant my legs and arms were weak, but thanks to piano work I was at least able to hold a pencil. Yet my hands were so weak that I still didn’t know how to button my cardigan and had to ask my teacher for help. I was so ashamed.

But continuing to play the piano meant I was using my whole body, it was therapy for everything and my motor skills were improving. When I was 7, I had the strength to stand and hold a bowl of cereal for two seconds. I let it go, but it was a very proud moment for me.

Doctors tried to tell my parents to treat me normally so that I could live a normal life, but as a child with TSC I thought my piano skills were quite special. Around 10 years old, I started to participate in piano competitions. In the beginning, they were community competitions and regional competitions. Then in high school, I started playing in national competitions.

At 18, I was the equivalent player to someone at a piano conservatory, but with the TSC holding me back on some development goals, I didn’t apply for one and instead, in 2016, to when I was 20, I went to Pepperdine University in Malibu, which is a great school.

The professors at my university started to realize my potential and it woke me up. I can be quite intense; if I like something, I like it. I woke up on a Saturday morning in 2017 at the age of 21 and started training over 6 hours a day. After a week, I was practicing 10 to 14 hours a day.

At the same time, I started catching up with my age development milestones very quickly. It wasn’t easy, but I never gave up. In 2019, I was able to catch up and reach the same level of development as an adult of my age. That same year, I made my teacher cry by playing a particular Bach fugue that she had learned during her doctoral studies.

I would always love to attend a piano conservatory, but for a few years now I put that aside and started to participate in international competitions. I have performed at Carnegie Hall in New York twice, at the Richard M. Nixon Presidential Library in California and at the Mozarteum Concert Hall in Salzburg, Austria after winning first prize in my age category at the International Music Competition. music “Grand Prize Virtuoso.” I was invited to do a piano tour in Russia, but it would have been in December and it would have been so cold that I did not go! One performance that was especially special to me was playing at TSC’s Comedy for a Cure in California in October. For the first time, I played as if no one was watching. I was able to express my emotions about my childhood with TSC and who I am today, using the embellishments and expressions of the piece I performed. At the end of the performance, I was rewarded with the warmest standing ovations I could have imagined. I bowed several times, but people continued to applaud.

I am also extremely proud to have recently won first prize in an international competition for the best performance of Chopin. The play I performed is about 40 pages long and took me two years to perfect it; being a pianist is not as glamorous as you might think!

I love Chopin so much that when I competed in Austria, my parents took me on a weeklong tour of Poland, his hometown. We visited the parks and cafes in which he composed and visited his homes. I have had the privilege of having both my parents who support me unconditionally to pursue my dreams. They are always happy to hear about my successes.

My goal now with the piano is to use my donation to raise awareness of TSC and to donate as much money as possible to make a difference, through benefit concerts and fundraising for TSC through my piano playing. . I really want to heal people with the piano. I also teach piano to others and had the honor of teaching someone with TSC recently. We connected in ways that I could not have imagined and I am able to teach him in a way that moves my heart. I can help her show her how the piano has improved my life.

For years I didn’t let myself be seen, but I let people see me through my music. I was able to express everything on the piano and convey the words that I was unable to say due to my speech delay. I am truly grateful for every phrase and melody I play. That’s why I love the piano.

Emily Phan is an award-winning pianist living in California. She is also TSC Future Leader for TSC Alliance.

All opinions expressed in this article are those of the author.

As said to Jenny Haward.