Choosing joy, courage, and community.

I used to be super athletic when I was younger. I enjoyed playing from 8am until the streetlights came on, and even then I wanted to keep going. When I moved, I got into some sports—soccer, flag football, and MMA. By middle school, I had shifted gears and started playing the violin, viola, and cello, though the violin was always my favorite. I continued playing all the way through my senior year of high school.

The first time I experienced any mobility issues was when I was 14 on a trip to Disneyland. After some time walking, I suddenly couldn’t walk anymore and felt like I was dragging myself around. When parade time came, I couldn’t physically stand, so I forced myself onto the curb to sit. People had often said I had a “funny walk”—almost like a little bounce—and that I always walked with determination.

Fast forward to college, and my walk became more chaotic and much slower. In the second half of my sophomore year, while moving out of my apartment, my mom noticed I was tossing my foot like it was limp. That moment began months of doctor visits. I first saw a foot specialist, who told me structurally I was fine and healthy. Fortunately, he was a determined doctor and referred me for an EMG.

I went through two EMGs, which revealed muscle weakness in both legs as well as my right foot—the one I was flinging. After those results, the doctor referred me to Barrows. A few months later, I was sent a genetic test, and in December, Barrows called to schedule an appointment at their ALS Clinic. At that point, I assumed I had some sort of muscular disorder, but I wasn’t officially told my diagnosis until after a six-hour appointment at Barrows. On January 11, 2021, at just 19 years old, I was diagnosed with ALS.

After my diagnosis, I took a year off from college since my junior year was meant to start the very next day. During that year, I also had my first surgery. I was suddenly thrown into a world of information, tests, and medications. It was overwhelming and stressful, but at the same time, I have had many good moments since then. I’ve been blessed with an incredible community of supportive friends and family, as well as the doctors at Barrows, who always love to hear me share my plans for my next adventure.

Since deciding that ALS is not who I am but simply something I have, I’ve refused to let it slow me down. I’ve continued living my life fully, creating wonderful opportunities for myself and experiencing so many new things.