I have a birth defect, but I didn’t know it until I was 39 years old.
I was waiting in an examination room for MRI results when my neurologist walked in, climbed atop the patient table without so much as a nod, flipped open a manila folder, and said, “Has anyone ever told you that you have a brain deformity?”
A few weeks earlier, when I walked into the office for my first neurologist appointment in over twenty years, I did it as an experiment. I wanted to see what happened when my mother wasn’t there anymore to tell doctors behind my back that I was putting on an Academy-Award worthy act: the migraines, the dizziness, the sudden collapses in school hallways between classes, the seizures that “didn’t look like any seizure she had ever seen,” the severe stomach pain, even my bruises from my father’s abuse. Fake, all of it, according to her, conversion disorders in medical speak. It didn’t matter that doctors told her conversion disorders are every bit as “real” as physical ailments. In her mind, conversion disorders = faking.
Social history interview with my mother, hours after my commitment to an adolescent psychiatric ward following a suicide attempt, 1990:
No doctor had ever (or yet) diagnosed my symptoms as psychosomatic, not to my face and not in my charts. My mother was forging a new medical history for me, writing it to her advantage, locking the closet so the skeletons wouldn’t fall out. Hence: Karrie never received any counseling.
She got my sister counseling. That much I can tell you.
But for a second child to need counseling? That’s the most dangerous thing of all: corroboration.
Deuteronomy 19:15 One witness shall not rise up against a man for any iniquity, or for any sin, in any sin that he sinneth: at the mouth of two witnesses, or at the mouth of three witnesses, shall the matter be established.
The first time I requested my medical records over thirteen years ago, the hospital redacted the social history interview. The second time I requested them, in 2013, someone in the St. Luke’s records department slipped in six extra pages. Just like that, my history got rewritten.
The social worker labeled my mother “the informant,” like a snitch enlisted by the cops.
According to the informant:
Suddenly, my seizures were real enough to give me a shiner. How convenient.
Or my father was swinging his arm, and I just walked into it.
But I can’t blame her for that lie. She got that lie from me.
24 hours before my suicide attempt:
The Department of Human Services child abuse investigator thanks my mother for the coffee the way you thank a waitress, smirking at the faux brick wallpaper, the plastic Garfield clock and matching telephone, the burnt and peeling surfaces of our counters.
“Why don’t you tell me what happened?”
My father clenches his fists, grinds his teeth. Does Ms. DHS record this on the legal pad? I see she is writing, but for all I know she’s playing tic-tac-toe or rating the coffee and wait service, taking note of the stained carpet and cheap, vinyl tablecloth.
The investigator nods my direction, as if permission is all I need—never mind my father glaring at me. I want to dump her coffee on her lap, poke her eye with her pencil. Fuck her.
“I don’t know.”
“You don’t remember?”
Suddenly, I get that tickly feeling in the arches of my feet, like when I balance on bridge rails downtown.
I do remember. I remember how my father used to say, “Kids kick you in the teeth” every time Mom took my sister and me to Super Skate or devoted whole summer afternoons to teaching us to paint plaster Strawberry Shortcake and cat figurines.
I remember how he left the pewter buckle on his belt, and when it hit my hip, the ball and socket vibrated so hard I thought they might crack. One of his buckles was engraved with the symbol for the Masonic Lodge—a capital G inside the angle of a compass—and something about the G in the center made it seem more menacing, like God himself was branding me.
Now that I am old enough, I hit back.
I steal a glance at my father, hunched over, squeezing his right forearm tight as a blood pressure cuff, his t-shirt still streaked with oil from work, his socks worn where his big toe pushes on the fabric. Sometimes it seems like he’s trying to contain something so big his body isn’t strong enough to do it.
“Maybe it was an accident,” I say, looking the investigator in the eye. “Maybe he was swinging his arm and I just walked into it.”
Not until 24 years later will I comprehend the full consequences of what I have done. I have handed my mother corroboration on a platter. I have made her lie true.
At my first appointment as an adult at the neurologist, the receptionist slid a clipboard across the desk and directed me to fill out the intake forms.
Have you ever been physically or sexually abused? Y N
Do you suffer from depression? Y N
I froze, the pen tip hovering millimeters above the paper. If I lied on that intake form, I would never get vindication. Any diagnosis would be fruit of the poisoned tree. If I told the truth, my appointment would go just like all the others.
Once doctors saw the word “hysterical” in my history, they knew I couldn’t possibly be sick.
Even still, I took a gamble and told the truth.
Have you ever been physically or sexually abused? YES
Do you suffer from depression? YES
My mother treated my doctor visits like trials by ordeal, subjecting me to heinous and invasive tests–scopes shoved down my throat, electrical shocks to test my nerve responses, to name a few–not to find out whether I had this or that disease but to test my veracity. Every time a neurologist stuck electrodes to my head, it was a lie detector. Every time I got shoved in an MRI machine, I felt like a witch with her limbs tied behind her back, splashing down in the river.
And because my (now confirmed) temporal lobe epilepsy is notorious for evading EEG electrodes, my ailment proved the perfect validation strategy for my mother staying with my father, even though he hit his children and subjected us to sexual commentary and severe psychological abuse.
I bruised myself. And I was nuts.
Thanks to this medical history, I hate doctors with the fire of a thousand suns and usually only go when I’m desperate.
That day in 2014, though, I needed to know if I could rewrite my history. As I sat in that examination room with the words “Has anyone ever told you that you have a brain deformity?” hanging in the air, I thought I had broken free from my permanent record. I was born again.
Literally born again, discovering a birth defect at the age of 39.
Something nobody could accuse me of faking.
The neurologist sat down next to me and pointed to my cerebellum in the MRI images. “Do you see how it is descending through the foramen magnum?” She said. “That’s Chiari Malformation. It isn’t something that happened to you. You were born with it.”
Like most neurologists, she didn’t take time to explain the implications. I didn’t know until later how many of my lifelong symptoms and issues were explained by Chiari:
- word-finding issues
- buzzing and clicking in my ears
- balance and coordination problems at times
As for my seizures, which the Chiari doesn’t explain, my neurologist called them “textbook temporal lobe.” Basically, I won the neurological lottery.
I texted my mother with the results right away. The MRI showed a defect in my brain, I said. I left it at that. I guess I half-lied because I hoped she would take it as proof of my seizures.
But her response never came. Her apology never came.
Last week, my aunt suffered a grand mal seizure, and she has since been prescribed anti-seizure medications. It’s awful, and I wish I lived nearer to help her transition into the world of epilepsy.
She’s not the only a relative with seizures. There was my cousin Marcia, who careened off an interstate in 2006 thanks to a seizure. She died on impact. Her medications failed her.
Once, after another cousin got diagnosed, my father–with whom I went no-contact in the 90s–somehow obtained my number and called to half-ass apologize for not believing me back then. I hung up and promptly called AT &T to change my number. Too little, too late. And anyway, as soon as the alcohol wore off, I knew he’d change his story. Classic drunk bait-and-switch.
And yet, after my aunt’s seizure, I couldn’t help but hope for an apology from my mother. After all, seizure threshold is genetic.
But the text never came. The call never came.
Because even when you have an MRI scan.
Even when the doctor calls your epilepsy “textbook.”
Even when all the evidence points to you telling the truth.
You are still a liar.
That fucking chart follows you everywhere. Even when you are born again.
6 thoughts on “(re)birth defect: when vindication comes 39 years too late”
just wanted to say that, as always, your writing is so compelling. and has happened when i’ve read other pieces you’ve written, i am so envious of your very specific talent for codifying experience in language as tough as granite.
here’s the line this time: “That’s the most dangerous thing of all: corroboration.”
your ability to do this reminds me of your tattoos.
this particular sentence: reminds me why we write.
Reblogged this on Lynn Beisner and commented:
This is so sad and yet brilliant. It so clearly shows what it is like to suffer reputation abuse from a parent.
You are so brave Karrie. So many people do not have the strength, or the knowledge, or the perseverence to find their truth – let alone speak out about it. You are an inspiration, truly.
I’m sorry. You deserve better.
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