What Growing Up Around Brain Cancer Taught Me About Grief

At five years old, my parents sat me down on their bed and told me my mother had brain cancer. I don’t know if they said “glioblastoma” or not, but I definitely did not understand what that meant yet. I just knew the room felt serious.

So I asked the only question that mattered to me at the time: “Can I still go to Beth’s house on Friday?”

That’s one of the strange things about childhood grief and illness: Adults remember the catastrophe. Kids remember the mundane details around it.

I remember wig shopping with my mom after she lost her hair– it was so fun. I remember building card houses in hospital waiting rooms, and sympathy flowers that turned our home into a florist. I learned words like “radiation” long before I could spell them. Mom’s walker (and later her wheelchair, and even later her nursing home bed) was a normal accessory for her outfits.

But I didn’t understand that my mother was dying. Not really. To me, she was just very, very sick…perpetually.

My mom lived with the impacts of glioblastoma for eight years before she died when I was 13. By then, the effects of brain cancer and its treatment had become this terrifying, shapeless thing in my mind. It was something so painful and overwhelming that, for years as an adult, I mostly avoided looking directly at it.

I didn’t want to understand the medical side of what happened to her. I didn’t want to learn the statistics, the terminology, or the science. It all felt too scary, too heavy. Seeing anyone else with significant brain damage in any capacity took my breath away and made me teary-eyed. I could only look at it from the perspective of a frightened little girl.

But grief has a funny way of asking you to revisit things when you’re finally ready.

In the last few years of my life, now in my 30s, I’ve started learning more about brain cancer, from the perspective of a grown woman trying to better understand her mother, her childhood, and the disease that shaped both.

Understanding it more has made me fear it less. My mom’s cancer isn’t less serious or tragic in my mind, but it’s certainly less monstrous. There’s something powerful about finally looking directly at the thing that scared you your entire life and realizing you can survive knowing more about it.

For Brain Tumor Awareness Month, I’m thinking about all the children growing up around diagnoses they don’t yet understand,  and the adults they eventually become, still trying to make sense of it all. As a child, I survived by not fully understanding what was happening. As an adult, I’m finally learning that understanding it won’t destroy me.