Pinch Me and I'll Kick You

[I started updating an essay. Then I thought, "No, this stands alone... and kicks.]

My diagnosis is Semi-Vegetative (to my knowledge. I do know it was changed at least once.) My understanding is that Semi-Vegetative is under Persistent (or Permanent to some) Vegetative State, PVS. Recently, it has been referred to as Vegetative State. 

I still think my original diagnosis should have been Locked-In Syndrome with visual deficits. It's too late for tests now as I'm not locked-in anymore. I do display traits of being Locked-in, for example, typing with one finger.  Questions of consciousness should not be directed at me. LIS is conscious. My current state, Semi-Vegetative, and PVS are not conscious... yet I write this. That's an obvious error.

Now, I have been writing a while. Why hasn't my diagnosis changed yet?

To further bring question, why is my diagnosis changed?

Is this what happens to your loved one who is dying? You know they are dying. They should get _____ but they don't and they eventually die. You are too overcome with grief to fret about a lack of service. You get on with your own life.

I'm still at that diagnosis. I was dying and not given anything but the basic care. Now I'm not dying (anytime soon) and still get basic care. (That means no therapy or rehab.) This lack of service was my concern. I find out the lack is because I am not conscious.

Pinch me so I can kick you. Then tell me I'm not conscious.

(People seem to be more concerned over my conscious state than where I physically was and why I left.)

___________________________________

Since I am asking so many questions I will ask one more. What happened to the AVM, Arteriovenous Malformation, that was in my head? Why was an entire surgery, AVM removal and neural repair, omitted? Why? I want to know why. Am I not allowed to get better? Everything is pointing that way.

I do get better despite that. Now it's a miracle. 

How I Came To Be Unconscious

updated 4/25/15

"We are heavy duty neurobiologists and we have done a study Mr. Searle. We are convinced you are not conscious."  (7:01)

 

That's what happened to me, but without people. Instead it was a diagnosis. The diagnosis says I am not conscious. 

Give the diagnosis PVS when someone doesn't appear conscious and all is fine. Then they get better....

Well, if someone starts to show consciousness as I did, then make them "semi-vegetative." After that you better hope they die because there is nothing else. (MCS should have been next, not "semi-vegetative.")

"When people do get interested in it [consciousness] they say the most appalling things." (0:48) This is the letter explaining to me I'm in a coma http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html This letter is just an extension of the first error.

PVS can't be "not conscious." Carry it through and see what happens? I am in a coma. Just change the "P" in PVS back to "Persistent". "Persistent" knows no time limit. "Permanent" is forever.

________________________

 

This says PVS becomes permanent after "3 months in the US" http://en.wikipedia.org/wiki/Persistent_vegetative_state



Supersonic Hearing

VIDEOS UPDATED 4/7/2017
 

"You must have supersonic hearing or something,"

"Yes I do."

I am extremely low vision. I can see up to 7ft away with my left eye and 3-5 feet with my right. It was less, so I have hopes for more.

My first memory is of hearing something. I was most likely still in a deep coma. This is represented in lighter coma at the end in coma scales. It was a buzzer or alarm. It was annoying, and I thought it my alarm clock. I was sleeping good! I didn't want to wake up. I later found out the ventilator had an alarm and the noise was that.

I had been asleep for 5 weeks.

That was 12 years ago. I was classified as in a Persistent Vegetative State (PVS) when I woke. It became "Permanent." Some call that a coma. I disagree. Do I appear vegetative? Do I appear like I'm in a coma?

No Neuro Is No Concern

 

I'm surprised this issue doesn't concern people:  I do not have a neurologist, nor do I receive any neurological care.

I had brain surgery in 2004 to remove my AVM (arteriovenous malformation). This was the cause of my brain injury. My current medical plan was to leave it, treat it with medication, and wait for it to explode and kill me. This plan was not optimal. Stanford University offered something unusual but risky. They would try to shrink and remove the AVM. The procedure was not covered. It fell under research and was taken care of by the university.

I had been diagnosed as being in a Persistent (I think it changed to 'Permanent' at this time) Vegetative State, so I only received necessary daily care and general medical.

The surgery was successful. Instructions to follow-up with a neurologist never happened. The routine follow-up does not happen. I should get annual neurological appointments. I don't.

I was diagnosed as being vegetative way back before the surgery. The state was deemed 'Permanent.' Although my danger of dying was removed, and what I have gone through more closely resembled MCS (Minimally Conscious State), I am permanently vegetative.

The government has gone as far as to e-mail me and explain to me that I am in a coma. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html
 

I don't get anything but general medicine. I get regular GI appointments because I have a feeding tube. I saw a neurologist once when I got out of the hospital only because I pushed for it. It was not routine.

Vegetative persons don't get much other than nursing home care and basic medical. I don't even get all that now, as I am not in care. I get basic medical.

(Why would a vegetative person not be in care such as family or care home? The diagnosis I have is not right.)

Me Feisty?

  "Have you always been this feisty?"

 

The word "feisty" stuck-out to me. I had never used it. I'd always say I'm different. I never fit in. 

When I was in high school, and people were getting black trench coats, I went and got a trench coat...but it was blue. I didn't exactly fit in. (My hair didn't fit either. My head was shaved on one side.) That blue trench coat didn't fit in to the wildest fad.

"I fight authority"...authority says I'm unconscious. What would you do?

________________________________

All the ideas and everything I want to say...

"I have so many things in me that you can't even guess them all."

At least I can do this now and get most of it out...

________________________________

I have scientific ideas. Sometimes I write them down...

"A better term [for PVS or sometimes vegetative]  is "unresponsive wakefulness syndrome", Gary Williams. This is a better term than vegetative. It describes what's happening. Someone like me can't come along and stick a picture of a tomato butt with it.

This really got me thinking, "Moreover, if this person is typing full fledged sentences with complex thoughts they have moved beyond the minimally conscious state and into something akin to "locked-in syndrome" or what might just be called severe paralysis," Gary Williams. "Something akin to "locked-in syndrome" or what might just be called severe paralysis" makes sense to me. Years ago,  friends and family thought I had Locked-In Syndrome. I'd go through a process of blinking yes or no for every letter in  the alphabet in order to spell a word. That's how I communicated with my mother and close family. As I gained movement, I'd point to letters on a board. That's the paralysis. All this is now, is that I point to and press a letter on an electric letter board, the computer keyboard.

Thanks to the internet I can get everything I press out, out to the world. I talked about communication and technology a long time ago, http://thoughtfulveg.blogspot.com/2012/03/dualism-mind-and-brain.html  As technology advances, the  mind/brain issue will become clearer.

The vegetative man in Canada who communicates he's not in pain http://scitechdaily.com/canadian-man-in-vegetative-state-communicates-that-hes-not-in-pain/  screams of this "something akin to "locked-in syndrome" or what might just be called severe paralysis." In  my case and this case we're trapped in unresponsive bodies. I have just been lucky in that I got one finger to move faster.  He communicated because of the technology. I communicate because I use technology. (Try this, use a pencil without an eraser and type a sentence. You have to spell all words correctly and make capitol letters. If the computer freezes, you must hit CTRL, ALT, DELETE. It's not easy. The pencil has no eraser and doesn't stay. Also..."how do you hit three keys? Two is bad, but now there's three?") If you can do that, you either used technology, another person, or your fingers. I guess you could have used your tongue, but I'd hate to see your computer.

Am I really fighting authority? Or am I just telling you how it really is? Is this feisty? 

  



updated video 6/26/2018

It's On A Line

I'm going to pick on this definition, because it is not possibly true since I am the one writing this.The definition I am using comes from  http://www.thefreedictionary.com/persistent+vegetative+state. There are many others, but this uses the word, "irreversible."

   persistent vegetative state

n

(Medicine) Med an irreversible condition, resulting from brain damage, characterized by lack of consciousness, thought, and feeling, although reflex activities (such as breathing) continue Abbreviation PVS

If this was "irreversible", then I wouldn't be writing this. I was thinking the definition of MCS, minimally conscious state could just be tweaked, but you will see this, too, will need major revision.


http://encyclopedia.thefreedictionary.com/minimally+conscious+state 

Minimally conscious state
Classification and external resources
MeSH	D018458

A minimally conscious state (MCS) is a condition distinct from coma or the vegetative state,^[1] in which a patient exhibits deliberate, or cognitively mediated, behavior^[2] often enough, or consistently enough, for clinicians to be able to distinguish it from entirely unconscious, reflexive responses.
Auditory processing can differ between MCS and PVS.^[3] fMRI response to the patient's own name has been suggested as a technique to distinguish between MCS and PVS.^[4]

Prognosis

Patients with severe brain damage may progress through stages of unconsciousness with eyes closed (coma), to unconsciousness with eyes open (vegetative state), to a stage of "inconsistent, erratic responsiveness" (minimally conscious state). ^[5]
It is not known whether patients in MCS can process emotion. MCS is thought to have a more favorable outcome than persistent vegetative state.^[6]
Doctors in the USA recently succeeded in bringing a man who had been under MCS for six years back to consciousness by planting electrodes deep inside his brain. ^[7]



I see PVS as occurring on a linear progression of consciousness. It occurred in me prior to MCS.

   CONSCIOUSNESS

_____________________________________________________________________>>> COMA               PVS                 MCS                    EMERGING CONSCIOUSNESS                              

What I experienced was closer to the diagram in http://www.coma.ulg.ac.be/inform.html. This lists Locked-In Syndrome (LIS) as a separate state. LIS can be separate, but in my case it wasn't. It was intertwined with the PVS and MCS states.

 

BOTH PVS AND MCS WOULD BE ON THIS LINE. They are not separate states of consciousness.

The Talking Vegetable

Yes, I Talk

At the last hospital I was at during my long stay, I was classified "semi-vegetative." What was that? I looked for a definition. I couldn't find one. Finally, a doctor on a social network told me, "It's semi-PVS."
 

Was medicine trying to break down the barriers of politics? I had moved up in PVS to "semi." Were they going to come up with another level? Even if they did, it wouldn't be for me. I'm beyond that now. I was laughing with someone today, "Do I look vegetative?" "No."

A  while back there was a woman named Terri Schiavo. The government decided she could not recover from PVS (Persistent Vegetative State), and therefore she could die. So, once PVS always PVS. Or, once a vegetable always a vegetable.

So I came to the conclusion, I talk and I'm PVS. I'm a talking vegetable!

UPDATED PICTURE 4/23/2018