No one has ever seen before what is happening in me. The best way I can describe it is that I am slowly getting better. When I say slowly, I mean years. I’m still disabled, but no longer require life-support.
After the stroke, I was in a deep, eyes-closed coma. To say that this was pseudocoma may not be right. Latter stages may have been, but I doubt initially. I did not move at all, and I did not breathe on my own. My eyes were closed and I was unconscious to the world.
Upon opening my eyes, I still did not move or breathe on my own. I understood that I had a blood clot in my head that didn’t kill me all the way. Since I was unable to do anything, I discovered that I could turn my head to the side. It felt like it was all the way, but it may have only been half way. This latter was most likely. I remember turning my head side to side as fast as I could. I was intentionally trying to dislodge that blood clot in my head.
It must have been a partial turn, because it was noted that I was shaking my head. I was given the medication Celexa and I stopped. Unknown to others, I was already familiar with this particular medication. I was a behavior specialist. This medication would work on behavior, not spasms. Shaking my head was intentional. I was not unconscious. This is why Celexa worked.
I had been made PVS, Persistent Vegetative State. This is unconscious. This just extended my eyes-closed coma. This diagnosis was wrong.
The rehab I was at went on to get all of my left-side body parts to move. The movements were not strong, but they moved. The rehab suspected Locked-In Syndrome. This would have been Incomplete Locked-In Syndrome, as there was some movement.
The diagnosis should have been Locked-In Syndrome, Incomplete. There is some movement with the Incomplete form. This disorder is conscious.
I was completely weaned from a ventilator. That was a big deal. It had previously been done with brain injury, but those were done within weeks of the incident. Mine was many months later. Usually by then, deficits were thought to be permanent.
Before I left the rehab, I had started vocalizing. I got a couple of good speech therapy sessions. Medicaid/Medicare does not pay for speech. I had done general special education, so I was familiar with techniques but I was not a speech therapist. I would be switching to Medicaid.
After leaving the rehab, I was transferred to the other end of the state, Southern California, and was placed in a nursing home for quadriplegics who were very independent. That rehab had gotten my left arm moving and this new nursing home wasn’t sure what to do about that so they ignored it.
I started to move my right hand after a month or so. I was discouraged and told not to move it. I later found out that my mother was lectured on how the home was paid for the residents to be disabled. I couldn’t start moving my right side.
This is important. Nursing homes are financially set up for a person to have deficits. The more the better. Nursing homes are not paid for a person to get better. As a business, it’s residents need to fail. A person goes to a nursing home to die. There will be exceptions, but a majority will follow this concept.
I had been using a communication board at the rehab. It’s just a simple laminated piece of paper with the alphabet in large print. I’ve seen pictures used for children not reading, so this wasn’t anything new. I gave up my board when I went to the nursing home. I had started vocalizing and I was going to learn how to speak like those who do total immersion when they move to a new country and have to learn a new language. (Sorry dear government that I don’t swallow, but you didn’t give me speech.)
I moved back to Northern California. I had surgery in 2004 to remove the blood clot in my head, the AVM. I immediately noticed that I was speaking and moving easier. To me, a barrier had been removed. Others may not have noticed but I did.
The surgeon explained that I would not see immediate improvement. This was a learning thing. He only cleaned up my brain. He only made the playground neat and orderly. It was up to me to play. (These are my words. I like to describe learning as play.)
“You are probably seeing neurogenesis. It’s not a one time thing and it’s done. It’s a process. It’s more like repeated neuroplasticity. In me it has lasted years.
” Neurogenesis Is A Process
Learning is play for me. I learn extremely fast and I do it for fun. Go back in school records and you will see. Kids don’t normally leave high school and start college at 16.