Brain on Fire. I read the book. I saw the movie last night on Netflix. Both
times I was riveted and brought to an emotional place I try not to tap into too
often. Don’t get me wrong, I usually love books and movies about struggle, and
I especially appreciate topics that revolve around anything brain-related. But
if I’m honest, I didn’t even want to write this post.
Because it drags up so much and it keeps it hot on the
surface when I prefer it buried.
Keeps what hot on the surface?
The memories. The reality of my sister still living with a
malignant tumor in her brain.
I identified a lot with Susannah Cahalan’s loved ones in Brain on Fire. Their struggle, as they
grappled with the confusion and heartache that accompanies a rare diagnosis,
felt achingly familiar.
When my sister was eighteen, after her fourth or fifth
suicide attempt, in addition to other alarming behavior, a discerning doctor encouraged
my parents to have her undergo more tests. I was thirteen when my parents sat
me down and told me about my sister’s malignant tumor. Up until the radical behavior
change, I’d admired everything about my sister, everything from her fiery
attitude to her love of writing. She embodied an electric energy and I wanted
to be near that energy every chance I got.
That changed. So much about my sister changed in the years
that followed her cancer diagnosis. Other factors contributed to the disturbing
behavior that escalated from occasional occurrences to everyday chaos. But I’ve
always wondered what my sister would have been like—what she’d be like today—if
she didn’t have that cancerous mass festering inside her brain. (Doctors
attempted to remove the tumor soon after her diagnosis. During surgery they
decided for her quality of life, they would only remove half.)
I told you before that I didn’t want to write this post. I
seldom talk about this topic because it consumed so much of my life and waking
thoughts growing up. I decided to write about it because I know I’m not alone.
Not only do I have other family members who know what it’s like, I realize
there are thousands of people dealing with the unique tragedy of losing someone alive. They’re there, but
trapped somehow inside themselves. Whether due to addiction, mental illness, an
accident, Alzheimer’s, or other brain anomalies, your loved one isn’t who you
used to know and you’ve had to adjust to the new normal of who they are now. I
cried hard at the hopeful part in Brain
on Fire when Susannah makes strides toward recovery. I loved that for her,
but hurt for those I know who won’t walk that same path.
People love to tell me it’s a miracle that my sister, who
was only given six months to ten years at most at the time of her diagnosis,
has lived into her late 40s. Yes, it is. It’s a complicated miracle. Because in
many ways she’s still trapped. And she hardly resembles that fiery teen I put
on a pedestal all those years ago.
But I love her fiercely. And no one said loving is always
easy.
