This article was originally posted on Instagram.
Thirty years ago, for Halloween 1990, I was a Dead Punk Bride. I wasn’t much of a drinker but that night I had two mixed drinks. The next morning I had my first seizure. I was 21 years old, barely an adult. Five months later I had another seizure. So I had a brain MRI and an EEG. Yes, my EEG showed epileptiform discharges but at least I didn’t have a brain tumor… they said… Ironically, 28 years later, I was told I actually do have a brain tumor, a benign dysplasia leftover from my fetal development.
The first neurologist I went to informed me I had Generalized Epilepsy with tonic-clonic seizures based on my EEG. When I asked how he could be sure, he said “I’d bet half my house you will have more seizures.”
I said, “Really? You… would bet half your house?”
He confirmed, “Yes, really.”
He proceeded to try to convince me to take a medication known to cause fetal birth defects when taken during pregnancy. I explained to him, as a woman of childbearing age, I would not be taking medication with this possibility.
He raised his voice to a yell at me, “You don’t know what you are talking about!”
I was 22 years old and had just received a life-altering diagnosis. I said, “You don’t know much about how to care for or talk to young women.” And never went back to him. I’m not sure how I had the chutzpah to advocate for myself in this way but so glad I did.
Nowadays we hear the term “radical self-acceptance.” I think this is basically what I did with my Epilepsy diagnosis. Well, maybe at first there was some overly optimistic denial going on but then came my natural radical acceptance. If there was one second of “Why me?” It was immediately followed by “Why not me?” I had made a commitment to my teenage self to lean towards self-love and not away. This gave me an already worn path towards self-acceptance. And the effects of my seizures may have made this easier to absorb as the neuro storms seem to burn up my legs.
In the Epilepsy community, there is so much about fighting this disease, about being a warrior and such. While seizures, medications, diagnostics, and everything else that comes with Epilepsy can be awful and even kill you.
I have never felt I hated this disease or even that I had to fight against it. Epilepsy is part of me, even if I never have another seizure the rest of my life.
During my midwifery internship at a birth center in El Paso, Texas, I had a seizure while attending a laboring mother. It was just the two of us in the room. Later when I apologized, she said “Oh, no problem, I grew up on a farm, I’ve seen lots of animals doing this, you were just tired.” Basically likening me to a farm animal and I wasn’t offended in the least. Life, death, birth, seizures, we are just animals after all.
“I’m just trying not to die.”
Yarrow Rubin
I was on a strict ketogenic diet for a few years for seizure prevention, at one point my husband said “I’m really impressed with your willpower with this diet.”
I said, “I’m just trying not to die.”
He thought I was being a bit overly dramatic… but really for me, doing all I can to stay seizure-free is about staying alive. This is a balance of course… with risk, caution, and quality of life. Every day I walk my neurologic tightrope.
In the past five years, I have learned so much about living life as a disabled person… about embracing my illnesses while striving for answers, understanding, treatments, stability. I am doing my best to let go of so much internalized ableism. This 30 year anniversary of my first seizure feels significant, pivotal in ways I am still grasping. Disabled people and people with chronic illness often share this sentiment: Doctors: please don’t confuse your one day class at med school with my lifetime of living with this disease. I realized at 30 years old, my Epilepsy is old enough to have an MD/PhD of its own.
As birthdays honor living and surviving another year, I am ready to celebrate 30 years of surviving and thriving with Epilepsy. Hopefully, I will be adventurous enough to commemorate it with an Epilepsy themed tattoo. Today I am taking small leaps towards this.
© 2020 Yarrow Rubin All Rights Reserved
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