I am a writer as I start this manuscript. I write code for a living, and emails, thank you notes, follow-ups to rejection letters from dozens of companies. I write to-do lists with millions of story points. I write jokes for a struggling, local stand-up comedian (myself). I feel like I write checks that I hope people don’t cash immediately because I want to check my account first.
I write because the monologue inside my head is lengthy, I feel uniquely and epileptically like my days may not be long enough to recount it fully. Blind and epileptic people in ancient times could become gifted by the Gods and become prophets or bards, so maybe that’s part of my problem. Or it’s because I can’t speak well and nobody wants to tell me to shut up because it might be rude if I’ve already summoned the words.
I went blind when I was fourteen years old. If you’ve ever been fourteen, you may recall the extreme awkwardness of that age. It’s excruciating to just exist in front of other people when your face is mostly pimples and freckles and the most expensive accessory you own is orthodontia glued to your teeth. No? Not bad enough yet? I was also the new scholarship kid in a private school, brought in to raise test scores for their standardized tests. Certified nerd material.
The exam to get into private school involved writing an essay with the topic: “Would you rather be the strongest link in a weaker chain or the weakest link in a strong chain?” I wrote about being a strong link. By the end of that year, I was absolutely the weakest link.
That’s what having a cerebral arteriovenous malformation hemorrhage does. One day you’re cruising along with great grades and the ability to walk and see, the next, you’re dying and losing parts of yourself that will never come back.
On January 17, 2011, I was living a mostly normal life.
On January 18, 2011, I died and came back into a new life, one that I wasn’t sure I even wanted anymore.
One of my many hospital visitors gave me a notebook, specifically to write about bad days and bad experiences. I still have it. In my shaky, stroked out handwriting, it says:
Hospital Day 15
February 2, 2011
Heather brought this to me. It’s a cat journal for evil thoughts because cats are somewhat evil.
Evil thought: hospital food might be pureed cadavers.
Dr. Glazier says I may be out of here by next week. That’s good.
My left side is still so. NUMB. Tingly and cold and unresponsive.
My hospitalists didn’t tell me that I had had two strokes by this time and that my left side would tingle and fight me forever. It didn’t stop me from writing, even as frail as I was then. I wrote on the next pages about how I couldn’t walk and couldn’t even go to the bathroom by myself. I focused so much on what I couldn’t do that I failed to realize anything else.
I was surrounded by loss and pain in the hospital. My ICU cohabitants were dying around me. The insurance company pushed for my early release back into the care of my parents and not into long-term rehabilitation. That should’ve been written as an evil thing into my cat journal. I couldn’t have known what that meant for me. I just knew that the hospital physical therapists wanted me to walk enough to go down the hall or I would need an expensive wheelchair forever. On February 4, I wrote, “I walked today, down the hall!” For the next two days, I recovered in bed from the exertion of walking 250 ft. I should have picked the wheelchair. How was I to know that this weakness would endure forever?
Fast forward: by March I was back at school. I wrote in the journal about how my mother was always angry. I was home, and the pity party had wound down from other people. It was more and more difficult to find anyone who wanted to be home with the invalid. My mother was constantly home with me, and I attended school in spurts. I took the end of the year standardized tests with my grade and had my first epileptic seizure at the end of that week. In Latin class on a Friday in May, my body fought back against the exertion of thinking and writing. The Latin for “to convulse” is convéllere: convellō, convellis, convellit, convéllimus, convéllitis, convellunt. Please chant those, in order, for the class.
I wound up on the floor of the classroom with my peers staring at my seizing body. Principal D called my parents because during the seizure, my shirt rode up to my belly button and was therefore against the dress code. He was more concerned about my midriff than my brain.
After my Latin class seizure, there was a meeting with the same principal, my parents, and all my teachers. Principal D requested during this meeting that I wear a helmet to school and come up with some kind of signal to tell my teachers discreetly if I was about to have a seizure. I extended my middle finger and raised it like I was asking a question: “They won’t miss this signal.” Detention followed swiftly.
To pass the 8th grade, I had to write a cross-curricular research paper about Albert Einstein. It fulfilled my requirements for English, history, and science so that I could go to high school. I was determined to write it because repeating 8th grade would be unbearable. Nothing but Albert Einstein and his pickled brain could hold me back, but the thought of his brain in a jar made me want to vomit since I had seen bloody pictures of my own brain matter so recently.
May I please remind you that I had had two strokes and open brain surgery, and was still expected to churn out a semester’s research paper in between physical therapy, occupational therapy, and speech therapy? I could not walk, tie my shoes, type, nor speak fluently. A research paper about Albert Einstein was low on my list of priorities, but writing had to save me from repeating the grade. It took until June for me to finish, but the school and the English teacher accepted it. If I had a copy, I could paste an excerpt of this awful paper here, but please know that it is embarrassingly bad and it deserved the “C” that it earned. Cs get degrees became my motto as I strove for completion, not perfection.
Relinquishing perfection was and is my biggest hurdle. I always had the control to be perfect in school before my strokes, but in my new life, I had to realize that done is better than perfect. Writing was just the means to an end, editing was a task to be checked off, and school was another to-do on my list. The endless to-do list of recovery included re-learning to walk, talk, write, ride a bicycle, rollerblade. Did Einstein rollerblade or roller skate? Did Einstein get detention? I know he took Latin, but did he chant the verbs for how to have a seizure? Probably not, but by May, I did all of it, much to my parents’ horror.
