The boys at the Youth Detention Facility where I worked were curious. They were locked up; the staff often their only source of entertainment and link to the outside world. They wanted to know why I was wearing bandages on my hands (the skin on my palms would break apart and droplets of blood would smear onto my paperwork), why I was walking “funny” (the pain radiated into my hips and vicious spasms would grip my hip muscles in a blinding wall of pain). Some of the more heartless boys would insist, “Someone fucked her good”. I finally collapsed on the floor in my classroom, thankfully while the boys were at lunch, and I was driven home by another teacher. It was two months before I was finally able to go back to work. Two months of doctor visits and pain medicines that left me a dribbling fool, and still pain addled. I was reduced to using a walker part of the time.
One doctor told me he thought I had M.S. He stuck electrodes in my legs and sent jolts of electricity into my muscles. Not comfortable, but not painful; not productive either. Finally he told me that he wanted to perform a spinal tap. I didn’t go back. One doctor told me it was all in my mind and if I didn’t think I was in pain, I wouldn’t be. Thanks for telling me doc. Let me plummet you with a brick and then you tell me it doesn’t hurt, okay? Fucker.
9/11 happened. I found myself seated in my living room recliner, barely able to twist my body without debilitating spasms periodically locking my body. I watched the 9/11 news coverage over and over again. I watched the towers crumble. I watched the people run. I watched the tiny figures hurl themselves from one death to another. Grief and helplessness washed over me. The towers falling became personal and reflective of my own crumbling body. The towers came to represent everything I saw as hopeless and nonsensical. I cried so much that my dad came to my house and turned off the television. He told me not to turn it back on for awhile. I complied. I was too worn out with crying not to.
I spent most of my days in a fog of pain medicines. When the pain became too much to bear and broke through the Loratabs, mom and dad would come to my house, slowly walk me to the car (sometimes half carry me), and drive me to the E.R where a doctor would inject me with demoral. That was the only thing that gave me even brief periods of total release. One doctor who saw me admitted that he really didn’t know what was going on. At least he was honest. He did give me the name of a doctor who he insisted was a great diagnostician. Three weeks later I had a diagnoses that sounded plausible and felt right; psoriatic arthritis. I was put on a cocktail of immune suppressant drugs, placed on a waiting list for a new biologic medicine and I set about trying to incorporate “Arthur” into my life. I wanted to go back to work. I wanted to go back to “my boys” .
All of that happened over ten years ago. I no longer remember what it feels like to not live with a chronic autoimmune disorder. Some days, mostly the rainy barometric fluctuating ones, I ache with trying to be normal in a world that doesn't understand that this is as normal as I get, and that it isn't faked or contrived, or preconceived. I didn't do this to myself. It wasn't my choice. Why would anyone want this?.
Did the Hep B virus vaccine cause it? Probably not in itself. Probably a combination of genetics, stress, and the vaccine. Anyway, I can't go back and undo it, so why conjecture? I live with it, or "Arthur" lives with me. Take your pick. Either way, we are now life life companions, and I will not "go gently into that good night". Nope, I'll fight him, just as I have fought since he arrived. I have a life to live.