A Long Time Coming
Today is National Coming Out Day, and I cannot think of a better time to be coming out with our blog feature and our story as an organization.
Escape has been and meant many different things over the last several years, and what we have become today is what we were always meant to be. An escape.
I chose the name Escape, because all I wanted during my treatment was an escape.
An escape from the chemotherapy,
An escape from the pills,
An escape from the needles,
An escape from the pain,
And an escape from being sick.
I missed my community, going to school, and especially my health. I wanted to change the way things were so other patients wouldn’t have to go through the same feelings of isolation that I felt.
At first, this project and organization started with an idea. I was receiving in-patient infusion for chemotherapy in 2012 at the age of 16 in a pediatric oncology hospital. When the Child Life Specialist came to my hospital room and asked if they could get anything, I asked what they had for teenagers. The child life specialist was stumped and didn’t have any activities for teenagers, but jokingly offered a toy train.
Why does a hospital that treats teenagers and young adults, not have ANY short-term supports for this population? I wanted to fix this. After finishing treatment and starting the journey of remission, I began a student organization at my highschool. Working with my classmates and local community, we successfully collected donations of board games, movies, books, and video games that were specifically for this age group.
Over the course of several years, I was able to coordinate with my medical team and they now have programs tailored toward teenagers and young adults and they even have an office specifically for young adults experiencing cancer.
Escape took a bit of a hiatus during my senior year of highschool and freshman year of college while I navigated late side effects from my treatment for Hodgkin’s Lymphoma. When Escape initially started, I was trying to help other patients like me from a very distant perspective. I wanted to act like cancer had never happened to me. I wanted to act like it hadn’t changed anything about me or my life. And needless to say, that didn’t work out for very long. Once returning back to ‘normal life’, everyone and everything felt different. I had just gone through a truly life altering experience and I struggled to relate to my peers as easily as I had before cancer.
I took this time to figure out my health, find a new normal, and self-reflect. I began researching supports for people my age who had been through cancer because I didn’t know any young cancer survivors and I was finally ready to embrace who I was with this new community. I found it difficult to process and accept that cancer was something I was still going through and would be for the rest of my life, even after treatment. I was afraid that my prognosis and experiences with chemo and radiation were not ‘serious’ and ‘long’ enough for there to be any validity to my need for emotional support. With the excitement surrounding the end of my treatment, I thought that was it. I thought I was done. That’s what my community said, what society said. I had no idea that my journey was going to entail more testing (for life), more bloodwork, new diagnoses, new medication, and more surgeries as a reward when entering survivorship. My experience with cancer was far from over. In fact, it was just beginning.
During my quest for finding support, I stumbled across a national conference for young adult cancer patients, survivors, and caregivers. I received a scholarship to attend and I traveled across the country to discover that I was not alone. I learned that I had peers who were going through similar experiences. I discovered even more organizations that also serve adolescents and young adults experiencing cancer. I found community. I found belonging. Most importantly, I found myself.
After attending this conference and spending the summer before my sophomore year of college getting to know my new friends in the cancer community, I felt inspired to start a student organization at my university. For the last three years of college, I spent time on campus with classmates raising awareness about prevention, detection, running a DKMS drive, and also building a support network among students affected by cancer. Through all of this, I continued to attend the young adult cancer conference annually.
I was finally feeling like life was starting to make more sense but there was still a piece of the puzzle missing and new things began to emerge in my life that needed additional support.
During my junior year of college, I became very involved in the organization that runs the national cancer conference. I also took on a role of running supportive chats and conference sessions for the LGBTQIA+ cancer community. I was out about my queer identity with my found family, i.e. friends, colleagues, and my cancer community, but I had intentionally left my family in the dark. Meaning I had to navigate supporting the LGBTQIA+ cancer community, which required a lot of social media promotion, without my family finding out.
I was terrified of disappointing my family, especially my parents. My evangelical upbringing fueled my fear of being condemned and rejected for who I am so much that this anxiety was always at the forefront of my mind. My parents had watched me go through a life threatening illness. They were so proud of everything I was doing in my survivorship, that the idea of doing anything that could hurt them felt worse than not openly living my truth.
As I started to gain visibility as a queer advocate, I had accepted that my nuclear family would likely find out sooner rather than later through social media, though I had still hoped to tell them on my own terms after graduation. I was outed before either could take place. It was difficult and has continued to be difficult with my family, but I am grateful to openly express myself now.
While some of what I expected regarding my relationships did happen, I found support in places I least expected. I was fortunate, but the loss and distance of close relationships weighed heavily. All I wanted was to be treated the same as they had always treated me.
Regardless of how. I was finally out. I was finally free to be open about my identity and the work I do in my community. I was out, but now I couldn’t share my authentic joy with the ones I love most and I was experiencing a new kind of isolation. My survivorship and queer identity also began to intersect medically.
I wouldn’t say I was back to square one, but my puzzle still wasn’t complete. So what did I do? I began researching what adolescent and young adult LGBTQIA+ cancer organizations existed for peer support.
Here’s what I found:
In the lack of resources found, I had discovered the missing puzzle piece and Escape evolved with a new purpose. I created a facebook group for the LGBTQIA+ folx I had met at cancer related events. Since, we have grown exponentially! This community need was finally being met. A safe space now existed to talk about our intersections of cancer and LGBTQIA+ identity.
In the year of 2020, with all events moving to virtual platforms due to COVID-19, I got my act together and built a website to make Escape’s resources and social media more accessible for a virtual cancer conference. Escape took off! We now have participants from all over the world, nine partnering organizations, a growing Escape Team and volunteers working diligently behind the scenes while we begin the process of becoming a non-profit organization!
As for myself, I have a beautiful and supportive partner, two children who make everyday an adventure, and an ever growing network of people I love!
And today, we are launching our blog. This is a space to share your thoughts and experiences. This is a space to be authentic. This is a space to learn about ourselves and our community.
While National Coming Out Day is a day of celebration and love, we recognize that it can also be a day of sadness and grief. Coming out is not always an easy or safe process. Know that it is okay if you are not out; our resources have been tailored to protect your anonymity. We see you. We love you. We celebrate you.
For blog submissions, please email firstname.lastname@example.org. Submissions should include: title of the post and whatever you would like to share! Personal narrative, poems, songs, letters, photography, and art are all encouraged! Submissions do not need to be specifically related to both LGBTQIA+ identity and cancer. It could be both, or it could be either. Blog posts can also be shared as anonymous on the website upon request.