TROLLEY

My constant summer camp memories include cheers at meals, the sound of a fishing line hitting the water, a camper swinging through the air on a zip line, pieing counselors in the face, and making friendship bracelets. 

But camp for me is about something else, memories that would not come from a camp for able kids: the sound of a wheelchair rolling across pavement, walkie calls to nursing staff for medications, and the warmest swimming pool ever so kids with sickle cell can swim too. 

Camp for me has always been these things. It’s not the experience that able kids would talk about, but it’s mine. It’s been mine for fourteen years. It was mine when I was six with a broken leg and on chemotherapy. It was mine when I was a socially awkward high schooler. It’s still mine as a slightly less socially awkward college student. 

Statistically speaking, I was born to lose. At six months, I was diagnosed with a rare incurable neurological disorder - neurofibromatosis (NF1). At two, my parents divorced. By five, the first of seven brain tumors were diagnosed. At six, I began an odyssey of surgeries, chemotherapy, experimental treatments, broken bones, and physical, occupational and speech therapy. At seven my birth father, a decorated veteran, permanently left my life. By eight, autism, dyslexia, dysgraphia, and ADHD were diagnosed. 

I grew up too fast and my mom’s friends regularly described me as an “old soul.” I learned the ins and outs of family court, the failings of veteran mental health care, disability rights, and student advocacy. I listened to my mother argue with health insurance companies and special education boards. I understood my own mortality. 

It was an unlikely childhood to start. Disabled, in a complex health crisis, being raised by a single mother. I was entirely different from my peers and relatives, neither group really wanting to engage. But for one uncle, my birth father’s large family disappeared when he did. My mother’s family judged her parenting and kept us at a distance. There were few if any invitations to dinners, playdates, birthdays, or sleepovers. In the early days of my health issues, my mom and I stumbled around in the dark, our arms outstretched feeling for a safe wall. I longed for the joy of people who got me, didn’t judge me, and genuinely wanted to be around me. 

At six, my neurologist suggested Double H Ranch for summer camp. Located in the Adirondacks, Double H serves children with life threatening illnesses. The actor and philanthropist Paul Newman co-founded Double H as a place for “kids to raise a little hell” while facing significant life challenges. It was made for me. That summer, holding onto my mom with one hand and my stuffed animal in the other, I arrived in the woods for a week of sleepaway camp. While it may sound “normal” to a healthy child, the idea of a chance to be me, away from home, in a medically sound environment, with long days of fun and adventure planned, was transformational. For ten years I returned and drew a deep energy from this wellspring and immeasurable joy from the annual experience. 

I just turned twenty. There were days we never imagined twenty. I still have seven brain tumors; go to physical therapy; and NF remains without a cure. But this summer I returned to my favorite place on earth as a counselor. I hope to pass on the confidence to plow through being different. I hope to be a wellspring for the next generation. 

Camp made me the person that I am today. It gave me confidence and most importantly friends and peers who are like me and who wanted to be around me. Camp saved me and my family. It was the place where my mom and I never stumbled around in the darkness. Double H became my safe wall.