Crystal’s Story
Crystal, Composer & Writer
"In 2019, I was graduating with my PhD in Music from UCLA, scoring films, working for The GRAMMYs, falling in love with my now-partner Bram, and living my best life. We had big plans and big goals. Within twelve months though, everything I'd worked so hard for got shoved to the back burner as I switched gears to fight for my life.
I had suspected something was wrong for years at that point, because I got sick and injured so often, but I never let it stand in my way. I simply avoided triggers and pushed on. But by 2020, we couldn't ignore the symptoms anymore. It started with difficulty swallowing, fevers, and strange new allergies. Then daily headaches, vertigo that wouldn't subside, and excruciating pain. Every morning when I woke up it felt like I had been kicked in the back repeatedly.
During the first year of the pandemic we drove hundreds of miles to various doctors who all concluded that my labs and imaging were normal enough. Even my former GP said, "Go home. Do yoga." By December 2020, I was becoming paralyzed and had dropped to 99 lbs. I could no longer walk or cut my own food. Loud sounds scared me, and I couldn't do music anymore. ALS was the elephant in the room with my neurologist, and Bram and I had a week of tearful days where we feared the worst.
Then one night, in my desperation to survive, I googled "Things that look like ALS" with my one functioning hand. Lyme disease was on a list of six conditions. We took the list to the nearest Urgent Care doctor the next day who told me, "I think you have neurological Lyme disease." She referred me to infectious disease, prescribed antibiotics, and as some symptoms began to subside, hope was restored.
It's been two years since my Lyme journey began, and I can walk distances and play piano again. I'm working on an album that is dedicated to my fellow warriors because I think they are the strongest people in the universe. It is my hope that this music brings comfort and strength to others with chronic illness, because they are the invisible heroes in this world. They fight wars that no one else can see, and they deserve to be seen."
Stories reflect the experiences and perspectives of the individuals featured and are not intended as medical advice.
