Touchy Subject

My diagnosis is Semi-Vegetative. It's never heard of n I write.   -Angela
 

People are still up in arms about the Teri Schiavo case. So I'll go one back. Who remembers Karen Ann Quinlan?

I was a  little kid, but I remember the warning. Don't do drugs, or end up like that Quinlan girl!

This video talks about guardianship. Guardianship is where a big mess up occurred with me. Keep that in mind. I will come back to it as the issue now has the potential to surface.

After I opened my eyes, I didn't speak or move. I looked like how Teri Schiavo was. I was made Persistent Vegetative State. This is just an extension of the coma.

So I progressed from a closed-eye coma to an open-eye coma to whatever I am now. Is now a coma that talks?

It seems to be political. The word "vegetative" has to be kept. That word is basically a coma.

I went to a rehab after I opened my eyes using my work insurance. I think they wanted to say I had Locked-In Syndrome. I was not Vegetative. I had to leave when my insurance ran out.

Before vocalizing, I too communicated with one eye. 

"The last time I saw Margaret Worthen was in November 2012. She was in New York participating in a study of patients with severe brain injury. As soon as I walked into her room, I knew something had changed. She was still immobile, but she noticed my presence, was more attentive and engaged. And there was something else: She at times was able to use her left eye to answer simple yes or no questions. That morning, she seemed to relish her new found fluency. She responded with verve, as if the determined downward swoop of her eye could signal an exclamation point." https://www.nytimes.com/2017/08/24/opinion/minimally-conscious-brain-civil-rights.html?smid=tw-share

This woman was reclassified from PVS, Persistent Vegetative State, to MCS, Minimally Conscious State. 

What happened in that woman's case never happened in mine. I can go straight from Vegetative to Conscious. I don't appear to be vegetative anything now, unless you use the government's reason of being unable to swallow.

___________________________

Now we go back to guardianship. When I was in a closed-eye coma, a payee was appointed. They were eventually dismissed, but my diagnosis wasn't changed. I was still a vegetable. I was made a vegetable that was able to handle money. (This just screams Locked-In Syndrome.)

I left hospital life. That was Dec 2002 - March 2006, but it's just easier to say 4 years. I know it is 3 years and 4 months. I was moved around so much that I'd have to give an itinerary.

I've gone on to start writing. That sounds uneventful and it should. I have a big problem now. I'm not a legal entity. That's why I can't be studied... I can't give consent while in a coma. There is no guardian.

What do I do if my story is picked up? Decline because I can't give consent is not an option here. Watch me think of something.

A Very Smart Vegetable

I find this situation funny. PVS is a serious disorder. To say I'm not aware of my surroundings takes away from that.  "I really don't think there ever was PVS" http://thoughtfulveg.blogspot.com/2013/11/what-hell-happened.html I appeared PVS, though. "A persistent vegetative state is a disorder of consciousness in which patients with severe brain damage are in a state of partial arousal rather than true awareness." http://en.wikipedia.org/wiki/Persistent_vegetative_state I was not conscious as perceived by the diagnosing physician.The diagnosis was true then, but not permanent. I was not misdiagnosed. There wasn't human error.

"What, neurologically, makes a savant?What happens is that there is an injury to one part of the brain—most often the left hemisphere. And there is what I called a recruitment of still-intact brain tissue elsewhere. The brain seeks to correct the imbalance and will find an undamaged area, most often in the right hemisphere. There is then rewiring to that new area, and then there is the release of dormant potential, which can be at sometimes an astronomical level. So it's the three R's: recruitment of still-intact tissue, rewiring, and the release of whatever capacity is there." http://www.vice.com/read/whats-new-in-the-field-of-savant-syndrome-research-611

When I woke from a coma, getting skills was slow. I eventually used my left arm to propel a manual wheel chair. By this time, I had been deemed PVS. Time constraints make the status permanent. "This diagnosis is classified as a permanent vegetative state (PVS) some months after a non-traumatic brain injury (3 months in the US)." http://en.wikipedia.org/wiki/Persistent_vegetative_state

 

Now, me using that left arm means I still had right hemisphere. Of note, I am using my left index finger to type this.

 

 

 

The right side of the brain controls muscles on the left side of the body and the left side of the brain controls muscles on the right side of the body http://faculty.washington.edu/chudler/split.html

 

My primary diagnosis says I am not conscious. Anything added thereafter would still be not conscious. If something like Savant Syndrome is added now, I am still unconscious and become a very smart vegetable.

 

 



I am permanently unconscious.

I am "permanently" unconscious. It doesn't matter if I now appear to be conscious. The word "Persistent" had come to mean "Permanent" in PVS (Persistent Vegetative State). Once a "vegetable" is always a "vegetable." The word "Persistent"at least had hope.
 

"Vegetables" only receive daily care, usually in a medical facility. I live on my own. I do not receive that kind of care. I do not receive therapy. I do not receive rehab. I  do not have a neurologist, nor do I receive any neurological care or follow-up. "Vegetables" don't get any of those services.

(PVS not MCS, Minimally Conscious State, in this case.) If you were called a "vegetable" at one time you were probably diagnosed as MCS. "Far too often, patients [PVS] ... are given up for gone, left to languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness." http://www.wired.com/2013/02/searching-for-consciousness/ I've been able to get out of that situation, http://thoughtfulveg.blogspot.com/2014/12/vegetable-on-loose.html.)

That I talk and write now does not matter. I still have the PVS diagnosis. I have been unconscious for years. I have been writing for years. I couldn't write in the hospital. Time has passed. The diagnosis is "permanent" and therefore sticks. If anything is added, the primary is still there. I am permanently without consciousness.

 -there is no hope.