During my first week at UC Berkeley, my orientation leader gathered my orientation group in a circle on Memorial Glade so we could get to know each other better. She said in a dull tone, “Now it’s time for everyone to introduce yourselves and say where you’re from and what your intended major is.”
As we went around the circle, most people talked excitedly about how volunteering had shaped their major or how they loved being on the debate team in high school.
When it was my turn, I couldn’t speak about myself with the same enthusiasm. I couldn’t talk about my life or interests without discussing how myasthenia gravis had impacted them. I felt like I had to hide it from everyone because I didn’t want to trigger anyone or prompt feelings of uneasiness and pity.
So I made up some generic story about how the filmmaker Quentin Tarantino “inspired” me to study film. I wanted to come off as a cool freshman, not the person who steered the lighthearted conversation into a dark one. I thought honestly talking about my life would ruin my chances of making any friends.
But by doing this, I felt like I wasn’t being genuine about my life. While their questions about my past didn’t require giving my medical history, I often felt like I was hiding a part of myself if I didn’t talk about MG. My identity is centered on living with active MG symptoms and living in remission because it has shaped so much of my life. All my favorite foods, board games and movies all have memories tied to MG.
I wish I had the courage to say to them I wanted to major in film because I spent much of my time watching movies in the hospital. Action movies made me feel like I was participating in the outside world despite my entrapment in the white hospital walls. Even as an 8-year-old, I knew that the feeling of being trapped was foreign to most other kids my age.
Even my love of ice cream came from when I was 6 years old and had trouble swallowing most food. This ice cream addiction has followed me into adulthood because I am subconsciously afraid that I will choke on solid food.
So when people asked me questions about myself during my first year, I felt uneasy and reluctant to give detailed responses. One time, a girl in my residence hall asked, “What do people even do in Alabama?”
My throat closed up like during all the times I choked on my food. When I was living in Alabama, I spent a lot of time in the hospital, still coming to terms with my MG diagnosis. I didn’t want to elaborate, for fear of ruining the joyous high during the first week. So, I responded, “I guess it’s sort of a lazy city,” cringing at my response.
She seemed confused and said, “You guess? But you lived there!”
She smirked and tried to hide a laugh, which seemed like she was testing me. I was frustrated that my immediate response was not genuine and that my mind automatically reflected on memories of my time with MG. It was difficult for me to share a vital part of my identity in which MG had taken over much of my life.
I left the situation feeling disappointed that I couldn’t think of any positive memories of my time in Alabama. I wished I was able to live alone because these simple introductory questions would constantly trigger a wave of negative memories with MG.
As I started becoming closer to a couple of people in the dorms, we would often share our high school experiences, but I struggled to connect to them. My friend bragged about how she could write a 10-page history paper in a mere five hours. Everybody clapped in response, but I tried to hide my jealousy.
Without thinking, I exclaimed that history and English classes were especially brutal for me because my fingers would fumble over the keys on the keyboard, unable to flex or reach. I told my friends that when I would start my papers by writing my name, my fingers would be too weak to move properly, and I would inadvertently type “saremian.” At one point, I looked over the red squiggly line under my name and wished it was Sara until I would give up again. Those 10-page papers often took me days to write.
When I finished my story, there was an awkward silence, and no one clapped. I instantly felt like I had overshared a part of myself and that I had lost the opportunity to make genuine friendships. But I quickly realized that genuine friends wouldn’t shy away from being there for me.
The more time I continue to spend in Berkeley, the less I care about censoring my experience with MG. My intention is never to make someone uncomfortable when I bring up my physical and emotional struggles but instead, to exercise my identity in a way that is liberating.
I don’t need to censor myself in order to appear welcome or comforting, as I had previously done.
Simmy Khetpal writes the Friday column on having myasthenia gravis. Contact her at [email protected].