I am the "black sheep" and I'm proud of it.
Here are the medical facts: I have Ehlers-Danlos syndrome, Chiari malformation, syringomyelia from C2-T10, arachnoiditis, DDD, and uncontrollable tonic-clonic seizures. So far, I've had two brain surgeries and one spinal cord surgery to put in a shunt at C4 that drains into my lung cavity to keep the fluid off my brainstem. (All these conditions happened because I was born with them.)
Here are the "other" problems: my father molested me from the time I was five years old until my menstrual cycle mercifully started. I didn't tell my mother or any adult until I was in high school and the nightmares became too much and my parents' divorce was almost final and I thought everyone was safe. My mother accused me of lying and never believed me.
Because she thought I was lying about the abuse, she thought I was lying about the physical problems also, and she denied me medical care and told me I was making it all up.
Skip ahead. I avoid being institutionalized, and fight to keep my sanity and my failing body. I know to hide everything -- from neurodeficits and headaches to incest stories -- and I try to pretend to be normal for 15 years and a college degree and marriages and jobs and life.
But it doesn't last. I'm screaming in the night and having panic attacks, my limbs are beginning to jerk strangely, the headaches are undescribable -- and I'm still cooking Christmas dinner for a pack of wolves that only come around on major holidays, borrow money from me and never return it, and visit the father that molested me all the time and insist on telling me how great he is.
Seven years ago my body fails completely. An MRI reveals brain tissue is hanging down into my neck and a lot of my spinal cord has been destroyed from the inside out by a fluid-filled cyst. That was the first surgery. It fails. The cyst continues to grow.
It's 2003 and the cyst is up in the brainstem and down to my heart. I have no choice. Another surgery. The shunt is put in at C4. I wake up numb from the neck down in ICU.
My husband leaves me. Soon after, my family leaves me. My mother says, "What did you think happens to people like you?"
I have gone through another brain surgery since. In August last year the neurosurgeon had to remove three centimeters of brain tissue and the spinal cord was stuck to the brain by scar tissue. He said he'd never seen anything like the damage I had in there. It will be a year before we know if it did any good at all.
There is no money for any mental help -- I need to file bankrupcy just for the medical bills -- but having them gone has been the best help of all. I didn't realize how suicidal I was just being around people that didn't support me and belittled me and mocked me. I even heard from a distant relative that they even deny I've even had surgeries; they say I've carved the scars into my head and neck and back to get attention.
I wish people understood many child molesters live in their living rooms. They aren't greasy-haired skanks that hang out in the park and slither around in the bushes with lollipops and gummi bears and stick their hands down their pants. They're in nice suburban beds with their daughters, sons, and granddaughters.
Manderley