By Rebekah P. (she/they)
It was because of a rare cancer that I came into understanding my gender and sexuality. Of course, I wasn’t cognizant of this and didn’t put all the pieces together until the last 11 years.
This is because I was coming of age inside a fundamentalist church, and that church from my childhood only approved of like-minded colleges for continuing education, especially if your soul was living in a female-presenting body. It wasn’t until I was 23 that I was able to take my questions from middle school and be free to explore what that meant for a Christian woman like me.
In middle school, I was receiving chemotherapy for a rare cancer I had. This resulted in hair loss, a puffy face, and new physical features. After treatment ended and I was in remission, I liked having short, “buzz-cut” hair, and liked that I could style it like “one of the guys” in my school.
However, because my school rules mandated hair below the ears for females and hair above the ears for males, in both high school and college rulebooks, I had to grow my hair out after cancer treatment ended. Before Kindergarten, my mother would take me to get my hair done in short styles because I loved Julie Andrews in The Sound of Music. But once I was enrolled in school, I didn’t go back to shorter hairstyles for 17 years, omitting the time I had chemo. I also didn’t start wondering if I could date women and be a faithful Christian until I was 29 years old.
It was life-changing for me to meet and speak with Reverend Kathleen Remund – a queer, female pastor leading First Congregational Church in Menomonie, Wisconsin. Finally, I had someone who looked like me AND geeked out about biblical theology!
I am 36 years old and for the first time am starting my journey into queer joy and happiness. However, it’s still hard to exist as both Christian and queer in secular spaces – and that includes medical settings. I live in the Midwest, so unless my doctor’s appointment is specifically concerning my reproductive organs and/or sexuality, I don’t divulge my queer identity.
These days, I stay emotionally and mentally healthy with my inclusive friends in the Duluth chapter of the League of Minnesota Poets. In the Twin Ports (Superior, WI and Duluth, MN), we celebrate Pride the weekend of Labor Day as a community. I hope to support each of my cystinosis peers who identify under the LGBTQIA+ umbrella during the entire month of June for Pride on Next Generation of Cystinosis (NGC) with Adult Leadership Advisory Board (ALAB) Facebook posts!
About the Author:
Rebekah is the VP of Advocacy and Awareness for Next Generation of Cystinosis. They participated in a panel called “Beyond the Disability or Diagnosis: Rare Disease in Adulthood” at our 2023 Living Rare, Living Stronger Patient and Family Forum earlier this year. Watch it here!