It has been many years since my last brain surgery, and piece by piece I am putting its story to rest. The story of my brain tumor has been replayed over and over again, in my mind, out loud, in college scholarship applications, in fiction of my short story, Hearing Voices, my novel, Shaper, and my play, Survivor’s Guilt.
I decided to tell the long tale of my brain tumor when I was exploring topics of health and wellness that I wanted to write about. Then, of course, my mind wandered. I found myself staring into the small mirror above the sink that reflected the larger mirror on the door of the bathroom, pulling the strands of my hair apart as I looked at the seven-inch scar in the back of my head, as if for the first time.
That scar has almost always been there, and I can feel its bare surface tissue with bumpy interior. When I trace it with my fingers, it feels so large, so jagged and, sometimes, so ugly. I remember the gasps of my elementary school classmates when I tossed my hair over my face for Show and Tell. I remember my friends’ shocked cries when they thought I had gotten a blistering sunburn on the back of my neck. I remember bracing myself for the questions from hairdressers, even though I’ve been wearing my hair short for a while.
Yet somehow this time, I was able to see much more of that seven-inch scar than I have before. I must have asked my parents to take a picture and show me, once when I was a child. I never noticed how it curves, or that, in a way, it’s almost beautiful. My scar is like a winding river seen from a bird’s eye. Many days it feels like a reminder that I am imperfect and broken, but today it was a reminder that I am alive.
The full story itself is long, and I have deleted a thousand words trying to synthesize the entire journey for this post.
It began with a misdiagnosis when I was about four years old, but one day when I woke up in the middle of the night screaming in pain, my mother rushed me to the hospital, where I was diagnosed with a benign, but rare brain tumor called a cystic astrocytoma. It was cutting off the circulation of blood to my brain, and I would have been dead in 48 hours.
While the surgery was a success, they didn’t remove all of the brain tumor, so three years later, it grew back. That year was what my family calls the Summer of Hell. I had a follow up surgery, then contracted a kidney infection in the hospital, endured a multi-state power outage, and not even a month after I got home for the hospital, I was back for a follow-up surgery after my body rejected the medicine that was supposed to mimic bone and help me heal.
After that, years blurred together with MRIs, doctor appointments, tests, and, of course, the remaining anxiety from a little girl that didn’t understand what was happening.
The tumor affected my balance and coordination, especially on my left side, and I needed physical therapy to practice walking and using my left hand. Even today, I still can’t ride a bike. But the emotional wounds took the most time to heal, and it wasn’t until a few years ago that I finally began to shed the skin of “tumor girl,” and it wasn’t until this this past year that I was finally able to discuss the trauma of my surgeries in therapy.
After so many years, it feels like all of those emotions and fears have all but faded away. Still, sometimes I wonder if I hadn’t had a brain tumor, what my life would be like. Would I have my father’s natural grace and be a ballet dancer? Would I love playing the piano or the guitar? Would I ride my bike to work every day?
But I don’t know.
This is the only life I have, and I can’t re-write my own story.
But I keep writing anyways, and every now and then I stop and tell my story, hoping that it might make a difference to someone.