I use a pseudonym for privacy. The experiences, timelines, and hospitals are very real.
Hi! You can call me Peter. It’s very nice to meet you, and welcome to my blog!
I’m a first-generation immigrant living with Von Hippel-Lindau disease since 2001, officially. This isn’t a doom-and-gloom VHL blog, and it isn’t medical advice. It’s a collection of stories about getting diagnosed, figuring things out, and continuing to live a life around it. Living with something rare can feel isolating, so I hope some of these stories will be useful, reassuring, or at least familiar to others living with VHL or other serious health conditions.
A few fun facts about me: I love making music in my home studio in Queens, biking through the streets of Manhattan, and discovering new coffee shops.
START HERE
CHAPTER 01
WELCOME TO NEW YORK
Moving to New York wasn’t an easy decision. In fact, it was one of the most difficult and heartbreaking decisions I’ve ever made.
CHAPTER 02
WHERE ARE THE KEYS?
One day, while sitting in my home studio, playing with synths and testing new ideas, I started noticing something strange: I kept playing the wrong keys with my right hand. Consistently.
CHAPTER 03
THE SPECIALIST
Memorial Sloan Kettering Cancer Center. The place where I would eventually meet my guardian angels in person: the doctors and nurses whose kindness and humanity made me realize I wasn’t going through this alone.
CHAPTER 04
THE UNIVERSE
Funny how the universe works. The day my surgery was scheduled turned out to be the exact day I was supposed to sign the record deal. Interesting how the stars align with these things, right?