SCIythe

Only 79 other people on the planet have ever had a thoracic tethered spinal cord. They all had it corrected within weeks of the accidents.
It took 34 years for mine to be officially discovered.
The head neurosurgeon explained the spine is unnaturally snapped back at the heart level, opening up the vertebra. In that instant, the spinal cord was caught in that crevice, then chewed up for over three decades.
I recounted all of the violence I experienced to the neurosurgeons. Severe stuff at the hands of people. No. No, this can’t be done by another person. Neurosurgeon said. I recounted various falls from trees, bike accidents. No. Nothing like that is enough to cause this impact. A birth defect is equally impossible. Everything is developed normally.
He says an example is a speeding boat throwing someone 60 mph into the corner of a barn. A significant, unmistakable accident involving heavy machinery and high pressure impact is the only way this happens.
Mine was even weirder than that.
The lack of injury to the surrounding bone and tissue indicate it was a highly precise impact in infancy.
There was no way to heal all the myelin damage. They untethered it, but the operation made the condition far, far worse. It also turned me into a literal barometer. Any pressure change throws me into unbearable spasms for hours.
My spinal cord is eviscerated throughout the four inches that span the heart chakra. Dozens of tears and punctures straight to the nerve bundle. There is a sharp crease where it was bent in two, trapped in the vertebra, being chewed with every movement I made. There is a partial sever, scored like folded paper. It is similar to having MS lesions, only mine are deep and never heal.
No one ever believed I was really in pain. Not just family. Not just peers. The jerking spasms made people laugh at me. If I fell to the floor from the agony, I might get kicked. Or worse. Adults thought I was a hypochondriac. Though school nurses puzzled at the frequent fevers. They hid their rage when mom returned me to school days before they dictated. I likely had low-grade infections throughout childhood.
They always took too long on me with scoliosis check. This kind of injury causes a rare lower back curve. Instead of recommending a doctor, the checkers would eventually wave me along. Every year.
I had an attack in school and for the first time someone sent me to the ER. The doctor saw it and had no idea what it was, just that it was very serious. He told mom this & gave her the address of a specialist an hour away in Boston. He’d arranged for me to be seen that afternoon. She drove me home and told me never to talk about this bullshit again.
The attacks were part of my life since early childhood. She’d hit me for disturbing her peace with my howling. Sometimes she’d scream in my face, What do you want! You want me to bring you to the hospital!? Because you need attention!?
I felt deeply guilty and flawed because I knew she didn’t want to come home to me when it was bad. She told me this herself. I was just such a bummer.
After it was discovered at 34 I called mom. Like anyone would after a devastating diagnosis. She insisted there were never any spasms, no pain & never a visit to the ER. Before hanging up on me she said, You always were healthy. You had a healthy childhood and nothing bad ever happened to you. You have been a sick liar your entire life, desperate for attention and I am ashamed of you.
When I was a pre-teen I fractured my neck diving at the Dover, NH public pool. Mom would not take me to the hospital. I’d already developed a dissociative method to endure the spinal cord injury. Breaking my neck helped me train that even further. The method compromises my physical health.
I walked around with an undiagnosed fractured neck until it healed – badly – on it’s own.

The MRI’s at age 34 confirmed this and other untreated injuries from childhood.

One neurosurgeon was genuinely horrified when she called with the results. What the fuck happened to you?
I spent my life with perhaps the rarest instance of spinal cord injury known in medicine. I live in a state of agony no one should endure for a minute, let alone an entire life.
#RH-