fly away, rage
because I don’t want to be angry
I want change
It felt like a death sentence - diagnosed with PSC & IBD (primary sclerosing cholangitis & inflammatory bowel disease) at just 16 years old, I didn’t know how I was going to survive.
No treatment available and a grim life expectancy, an entire year of high school missed, college auditions right around the corner, new medications, new limitations, and new challenges.. “following my dreams” felt impossible.
I was determined to do it anyway.
and I succeeded, for a while. But as an adult, my insurance kicked me off the medication keeping my IBD in remission - it took 2 years to get back in remission. Then, I had a complication from my PSC, and it took another 3 years for my medical team and I to figure out what was wrong and fix it. Then, my IBD flared again, and my insurance denied the new medication I was prescribed.
And the cycle just. keeps. going.
Every insurance denial has delayed my care, and cost me dearly in time, health, and money.
But I’m alive.
When I recovered from my PSC complication, I came back to music in a new way. Leaving my classical roots behind, I started learning guitar, taking vocal lessons, and writing and recording my own music.
I write music to process the rage I feel.
Rage, because medical care is expensive and inaccessible for far too many Americans.
Rage, because hospitals and clinics are too often under-staffed, leading to physician and medical staff burn out, negatively affecting patient care.
Rage, because funding for vital, life-saving research has been cut dramatically.