Tonight I watched the Netflix movie “Brain on Fire”, based off the book I read so many years ago as I sat sick in bed.
My eyes don’t cry, but in my head I was on my knees, tears streaming down my face, yelling at the universe.
I watched what felt like a mirror image of a girl I knew way too well, that girl was me five years ago.
The girl was my fifteen year old self in the cardiologist after having spent a month hooked up to a cardiac monitor, and no pattern appearing.
That girl was me sitting in the allergists office, as he told my mother I should seek psychiatric care.
That girl was me after picking glue off my head from countless clean EEG’s, but still seizing on the floor.
That girl was me as a nurse picked me off of the bathroom floor, looked me in the eyes and told me to stop faking it.
THAT GIRL WAS ME.
That girl was me on the bathroom floor praying to God, and screaming to my family to help me.
That girl was me hoping and wishing that somehow maybe I would just die, so I didn’t have to go through it anymore.
That girl was me telling my mother to check me into the hospital because I didn’t want to live anymore.
THAT GIRL WAS ME.
There is only one combination of five words put together in a sentence that bring me to my knees, that hyperventilate me, that cause the sheer flashbacks, and anxiety attacks.
“It’s all in your head.”
Say it louder for the people in the back. Say it louder and make them feel the pain, and heartache, and utter nightmarish hell those five words bring.
Put a face to the story, a name to the people.
I cannot make you feel the nights I spent completely drained from crying, from being so defeated by my own body, and doctors. Simply living in a body fighting against you is draining. Simply trying to survive feels impossible.
To watch something that hits so close to home is so bittersweet. Sweet because it provides the comfort in knowing I wasn’t the only one left behind. Bitter because someone else knows the pain.
I have immense joy in the nurse that pulled my mom aside that night and whispered in her ear, “I shouldn’t be telling you this, but you need to go home and do all the research you can about POTS, I swear that’s what your daughter has.” Because maybe if it wasn’t for that woman I would still be stuck in my bed, and drowning on my bathroom floor.
I have tremendous gratitude for my team of doctors and nurses, that took me in, and ‘found me’ amongst all the broken that was inside of me, that pieced me back together again.
I have the utmost never ending love for my family that went through four years that I am certain were so many times worse than the nightmare I went through. It keeps me up at night, and I know if it does me, then it has to them too.
If you don’t read the book, then I urge you to spend the 90 minutes watching the movie, because as I sit here and type this, the tears I spoke about not having, are finally flowing.
My cheeks are left with tear drops because I don’t have the real words to explain to you how much of this story rings true to not only myself, but SO MANY others.
Say it louder for the people in the back. Make them listen. Make them hear.
If I say anything it is this: I believe in medicine far more strongly than I believe in just about anything. But I have been forced to hear the nightmares, and I know they exist. This is not a wrong doing by medical professionals. This is not a failure on someone’s behalf. This is a doing of the universe, a life that slips through the unfortunate cracks. Medicine does not have all the answers, and it never will. We will never know everything, but we can listen. We can learn the stories of those that have slipped through the cracks, and we can listen, in hopes that someday we might catch someone’s life before it slips.
So say it louder for the people in the back. Scream the stories until they’re heard, and if they don’t listen, scream them louder.
Nobody knows your body better than you.
Let’s be listeners, and let’s be keepers of the knowledge of others stories.
Let’s try our damndest before we ever utter the five worded sentence, that brings me to my knees.