SEPTEMBER 17, 2014 | From My Journal
Back in 2012 (no longer available), I believe that’s when this video was taken, I wanted to see what others saw when I had my tics, tremors, face pulls and uncontrolled body movements cause by Psychogenic Non-Epileptic Seizures.
Though I wanted to see what others saw, I did it in a format that was easier for me to absorb — i.e. constructed an emotional distance — using a series of images instead of continuous video.
Every jerk and unwanted movement felt like electricity arcing through my body. I was in an incredible amount of pain every minute of everyday.
The aftermath of this was more pain due to contorted and pulled muscles. The chiropractor I was seeing then had never seen anyone severe as me in his career except one of his patients who battled MS.
An outright seizure would put me on the ground and, unlike seizures with a different source than trauma, these could last for a long period of time and then be re-triggered with sensory input like a light being turned on, someone talking, a light touch on my skin ( often touch was almost unbearable) and vibrations that are always surround us.
During this time my nickname was FFD for “Fifty First Dates.” I had zero tracking of time, zero short-term memory, lost many years of long-term memory and had to look outside to try and figure out what season we were in — whether it was 4th of July coming up or Christmas, I didn’t know.
I still struggle with tracking of time. That’s to say I don’t feel it and my memories from a decade ago and from yesterday all have the same weight. Because I think visually (slice of time, images, video stream, literally see my thoughts) I look for clues in fashion, hair, surroundings to help me date them.
Incredible to believe I was doing light years better here compared to 2010.
Now the tics, tremors and such show up more when I’m tired. While cognitive behavioral therapy helps me with minimizing the fits (which at the time of this video were constant), I can still feel the shocks caused by sensory overload running under my skin.
I still get auras (thankfully helps me know when to sit my ass down) and seizures, I have much more understanding of them and how to balance my life better to keep them to a minimum. That’s of course the challenge, finding a reasonable, livable format that minimizes the stress (emotional, physical, environmental, sensory) to have ability to function.
While I don’t have an actual hit-the-floor seizure on video (anymore) here is one of a guy experiencing one. That back arch he does in the video hits me with a ton of emotion — I know how fucking bad that feels.
When you see him arc his back, think about touching live electric wires and how that would feel, muscles violently contracting, seizing and unimaginable (unless you have this) pain zapping through every nerve.
My heart breaks seeing this guy. Afterwards, the exhaustion can take days, sometimes weeks. to decrease.