Striving for “Normal”

Recovering from the brain surgery I underwent when I was 12 years old has been the biggest instance of my resilience to date. I had a lemon-sized tumor in my cerebellum, which is located at the base of the brain, and the tumor badly damaged one of my ventricles, causing major brain swelling. The cerebellum is that part of the brain responsible for balance and motor functions. Post-surgery, I was left with significant learning and functioning difficulties, and I only overcame these with a three-and-a-half-year recovery regimen involving various therapies. Still, my teenage years were spent feeling like I was merely treading water. I didn’t have the opportunity to fully heal. It wasn’t until six years later, when a second surgery resolved the remaining swelling, that my full recovery could begin.

Following my surgery, my family and I were fighting to make sure that I received the help I needed from the hospital and the public school system. I was given an “individual education program”; these are created to ensure that students with disabilities have access to the accommodations needed to give them an opportunity to succeed that equals their peers. I was raised in a family where academic success was often held above all other accomplishments. Given my intellectual struggles during recovery, it was difficult for me to find self-worth if I could not “adequately” succeed academically. I felt like even if I tried my hardest to excel, the best I could ever hope to achieve was simply average. This was reinforced when I tried to talk about my experience; I quickly learned that my self-expression was often more confusing than helpful. This created a divide between myself, my peers, and my family. Most days, I thought I deserved isolation because my existence was a burden on everyone around me. Sadly, no one thought my mental health was a major concern until I demanded to see a therapist at age 17 because I was regularly having suicidal thoughts.

During this time, I began to go through what I call “phoenix cycles.” I felt like I was perpetually burning out and being reborn as someone slightly different; someone who wouldn’t make the same mistakes as the last version of me. I was very unkind to myself, and I didn’t think many people would understand if I were to share my reality (I still struggle with that). Eventually, I abandoned the parts of me that I felt were hopeless and focused on academics, particularly in order to overcome the low expectations that most professionals had for me after my first surgery. No one believed that it would be possible for me to graduate from high school, let alone college. So my life revolved around academics until I graduated from high school (on time, with a 3.85 grade point average), and then later, college (with honors). I thrived in college because it was there that I was able to explore the intricacies of my experience and find the words to better understand and explain my experiences growing up. I came to understand their significance in relation to the field of psychology, my chosen major.

Learning about psychology also helped me overcome my issues of social incompatibility. After my first surgery, when I was 12, it was like my social functioning had been shifted from automatic to manual. While my peers could naturally initiate and maintain relationships, I was left behind—  afraid I was somehow damaged and, therefore, unworthy of human connection. Every interaction became an opportunity to prove my social worth, yet I still felt that everyone who ever got close to me would eventually run away. I couldn’t blame others for their reactions, whether they were real or just in my perception. It was like I had some sort of invisible barrier that stopped people from getting close to me. I believed that I had some almost imperceptible flaw. I thought I could not be trusted. However, psychology taught me that there is a lot we don’t know about human personality and that humans do many strange things as a result of being social creatures. This helped me reframe my understanding of my problems; even if I didn’t have a solution, at least I could talk about my experiences and feel seen. I could talk about my needs in ways that provoked fewer toxic responses. I could better relate to others, like myself, who were struggling emotionally but couldn’t put their feelings into words. This was validating and greatly supported my notions about the impact I wanted to have on the world.

While college was a great time for me to gain clarity and perspective on my experiences, things really didn’t get better for me then. I wasn’t able to see the positive elements as actually being positive, or use them to empower myself, until years later. My college experience made me realize just how flawed conversations around mental health were at that time. These conversations, and the systems from which they emerged, were perpetuating systemic problems that only served to continually invalidate and harm the individuals those systems had been created to support. This ironic reality is part of what drove me to discover a nonprofit organization called Youth Era; a youth-led, peer-driven organization dedicated to empowering young people to succeed and experience their own significance. Youth Era accomplishes this by operating drop-in centers where young people can socialize, develop their skills, and get support. What sets Youth Era apart from other organizations is its members’ constant drive to empower youth voices at the systemic level.

Youth Era gave me a place where I could engage with others about their experiences in social and medical systems. It gave us a place where we could help each other through those struggles and fight for change. I found comfort that I was not entirely alone in some of the emotional experiences I’d had growing up. Additionally, I found a peer-led community recovery group dedicated to neurodiversity called Reimagining Recovery. Through Reimagining Recovery, I was able to dive into the peer-delivered services world and what makes it so special, as well as explore what makes fields like social services and mental health so difficult. Before I learned about peer work, my brain injury had always been a flaw that would inevitably result in isolation, disconnection, and misunderstanding. After learning about it, I saw potential value in my story where inherent incompatibility had always been.