Friday, November 29, 2013

"What the Hell Happened?"

Original 11/29/2013
Updated 3/11/2015

Besides "What the Hell happened?" her injury is a brain injury.

So, what happened with me? This is just a guess.

I really don't think there ever was PVS, I was probably MCS with low vision and labeled as PVS. As I have become more conscious it looks miraculous. I most likely had the central auditory agnosia described in plus a severe vision problem. (My mother had to present a LARGE written letter?) I would have been deemed PVS just because of that initial brain scan. Rewiring hadn't happened yet. Of course it looked vegetative.

Some conditions are difficult to diagnose.

Most likely, my brain lobes weren't dead. The wiring was dead and the lobes couldn't do anything. "The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections. What appeared dead wasn't. Rewiring was needed.

I do credit Posit Science and their program InSight with seeing as well as I do, but it is still with primarily one eye. I am no longer blind in the other eye, but it is weak. When typing this, I still squint and I quite often close my right eye, the weak eye. It would have been blindness due to a lack of rewiring. Posit Science's program rewired my brain. It did not perform a miracle.

Progress has been slow. VERY slow. Imagine you have a 365 page book. You are only allowed one page a day. It will take a year to get through that book. Now you have a shelf of books. That's going to take a few years. A whole bookcase? That's the rest of your life. My weak side may be doing much more in ten years. I still have a lot of books.

His "injury" was an AVM bleed like I had. Mine was just worse.

The head trauma still happened. Acquired Savant Syndrome needs to be looked at. The 'lots of knowledge' has always been there. This statement gives rise to thoughts about Acquired Savant Syndrome. Knowledge is there but it is now processed differently. I'd also say there is more and it includes things I wouldn't know. There's also an amazing recovery. "Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity." This is just more reason.

Why isn't this disorder recognized? It offers plasticity. That's needed. Why is plasticity here? How do we get it? Can't tell you. Since this disorder isn't recognized, no one will ever know either. Hey, I'm not conscious. So I didn't tell you that.


Dr. Jill Bolte-Taylor unknowingly describes auditory agnosia in a stroke. At 12:55, "My colleague says to me 'Wo wo wo wo wo'."

Hers resolved, or rewired, quickly. I was in this state a while, maybe a few months. It's hard for me to tell, as I had no concept of time during that period, and no records were kept, because it's not known what to look for. It definitely was the entire coma (5 weeks) and for some time after I opened my eyes. It could be anywhere from a few days to a few weeks.

I have stated I heard in coma, but it's not words that stand out in my mind. It's an alarm. The ventilator had an alarm and this going off is what I remember. Talking to a person would still be important. The sound of the voice, if not, the words, would be understood. Some may understand words. This is only my experience.

No comments:

Post a Comment