I Can't See Your Mouth

The NPR story on masks helped me put it together. I have been lip-reading all this time- even now. I know that sounds absurd and I need to explain.

The mask covers the mouth. You can't see lip movement and facial expression.  I must be using facial cues to communicate. The world is in the middle of a pandemic and every one  is covering their face!

This photo is from NPR.

There is a cut-out and clear plastic is inserted.

Where did I come up with the idea that I was lip-reading..... 

https://youtu.be/nPq3Qtjwsi8

Dr. Nicholas Schiff describes a patient and a 

problem with determining consciousness.

I was looking for videos on Persistent Vegetative State (PVS) vs. Minimally Conscious State (MCS). I found a video of a doctor describing his patient. She wasn't altered consciousness, but she had Central Auditory Agnosia and she was using lip reading. I filed this away because I knew I was conscious.

You can see the importance of being able to see the mouth. Not all people need this.

Life-Saving Treatment

I was refused life-saving treatment by the government. I write this now so obviously I am still alive. I went through Stanford's free medical clinic as an indigent (penniless). They provided the necessary treatment, at a loss to the university.

Now the government just ignores me. What can they do? Admit they didn't do anything?

I am still Total Care. I do not walk. I do not eat. Nutrition comes from a feeding tube. I still have the vegetative diagnosis. These would all be grounds for letting a patient go.

I do something, though, that is very different. I talk. I speak and I write. I use one finger to write down my thoughts, as my speech isn't always understandable. My speech continues to improve, though. There was a time when I couldn't talk.

It was expected that I would die when I was sent home. I wouldn't have 24-hr nursing care. No one considered me. I remembered. Long ago I worked in a carehome. I just relayed important info to whomever does my care now.

As for other medical stuff, I'll just say that I know.

I was supposed to die. Neurological repair wouldn't be done on someone who was about to die. So I found someone who would take care of it. Stanford removed the AVM and cleaned up damage from my bleed. (The AVM, arteriovenous malformation, would kill me. It was a time-bomb ready to explode.)

Now what? I'm not dying anytime soon. Can I be conscious now?

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.

Start With The Semi-Vegetative

Thousands of unresponsive patients might actually be conscious

so start with the "semi-vegetative." That's what I am. I'm not sure if this classification exists outside of the United States.

What I have experienced this class to be was initially being vegetative, and later starting to talk. I believe other patients with this diagnosis also started to show emerging signs of consciousness. Some may have then stopped. Others may have expired.

"Semi-vegetative" may have started after this, the reawakening of Donald Herbert:

I did not expire like this man.

______________________________________________

I've thought this before and now it crosses my mind again... the advances of medical science are inadvertently causing what we call 'a return to consciousness.'

______________________________________________
 

There is a tree in the forest that falls. No one sees it or hears it. No one cares that it happened. Now there is one person in the forest. The tree falls and is witnessed. Still no one else sees or hears this. The person goes home to family and relates what happened in the forest. Now the tree falling becomes a fact and the story spreads. No one would have known without communication.

_____________________________________________

 

I'm now wondering that what we call 'a return to consciousness' is really 'a return to communication.' I was conscious years before I started writing. Medicine and therapy afford me the ability to write.

I now consistently and appropriately communicate thoughts and observations. I regained communication not consciousness.

Consciousness is Complicated

Contrary to  popular belief, I have always been conscious. I was conscious when I couldn't talk or move. I could only stare at you. How could I remember where I was if I was unconscious? Recalled Itinerary 

________________________ 

 
I was sent  an article on consciousness, http://nautil.us/issue/49/the-absurd/when-neurology-becomes-theology. It was saying science doesn't even know about it. So, if science doesn't know what it is, then how can anyone take it away?

The government took something it had no business taking. How can the government give back consciousness if they don't even know what they took? I don't know how much will be affected by what they did.

What they did:  they removed my payee when I couldn't talk, but left me PVS. This meant I could pay a bill, but I was unconscious. THEY TOOK MY CONSCIOUSNESS!

It affects my Medicaid (Medi-Cal). I only get the bare minimum because my diagnosis says I'm dying... like tomorrow. (Hopefully I'm not going to die soon.) Nothing can be added now because I am unconscious and dying.

That was almost 15 years ago. If I had died, no problem.

For those of my readers who are doctors, have any of you ever had a patient who was going to die, it reached government paperwork (so days have passed), and then the patient turned around and got better?

I'm trying to figure out now what can be done. I guess I will "push" the system. As Americans have faith in the Declaration of Independence and all amendments. One thing I have found is that I don't have problems with absentee ballots. This was an amendment and voting was written very well.

Next is income. I don't fit the "Back To Work" criteria, but I write. When I generate income, the IRS can figure it out.

Medical is screwed up. That may take a lawsuit, but I prefer not to push one.

Who knows where my "consciousness" is. Actually, I know I am conscious, but this other thing sounds like a piece of paper you get from the Wizard of Oz.

 

Why I Need To Be Made Conscious

I accept my disability no problem, but it messed up my Medicaid. I had to go back in records. What I found.... 

I am not conscious. "Vegetative" was never changed. "Semi" was added later, but it still used the definition for Persistent Vegetative State. "Vegetative" is not conscious. If the person is awake, it is an open-eye coma.

To top things off, I may be brain dead. The term "brain death" was never used. My medical records list my demeanor at one hospital. These are the same criteria for brain death. My records go on since I didn't die. Is it only implied that I was initially brain dead? The original criteria is never refuted.

I receive Medicaid services for a vegetative person, also called a Vegetable. In California these services are called Medi-Cal. The services I receive are very basic medical services. I get less than others with Medi-Cal. Therapy is not included. Messing up my Medicaid back then when I had a brain bleed meant messing me up now to every day that will come until that Medicaid is fixed. I've gotten no rehab. Any future therapy I will need is already denied.

______________________________

A question was asked about trading your eyesight for an IQ increase, IQ Increase Question. "So maybe the first thing I will think of, will be to actually use my brain to restore my eyesight." I've done eyesight well enough to see my room. Lets Make a Deal recounts my eyesight recovery. The essay discusses eyesight rewiring.


I have other issues that I have applied my knowledge to. About two years ago, the GI Specialist for my g-tube commented that he just wanted to remove my feeding tube. It was getting infections at an extreme rate. I talk now. This would lead a person to believe I didn't need it. 

The problem is, though, I talk without swallowing. I never got Speech Therapy, or this would have been worked with along the way. Now you see me sucking on lollipops. I'll learn to swallow like the children with oral aversion I had long ago worked with as an Infant Development Specialist.

I do not get Speech Therapy. I am never to get Speech to teach me how to swallow. Just when I thought I had my speech up to a passing level, I find I have one more thing to do.


Walking is another big issue. People can see the wheelchair. I have posted pictures of me standing. Like Speech, I do not get Physical Therapy (PT). I taught myself to push to a stand. I figured if I could only get my body to be like the toddlers I used to work with then  PT would step in. Therapists want to now. They see something they can work with. Insurance, or lack of, prevents them.

 I stood long enough for the photo.

First off, I am not designated "conscious" on government paperwork. Unconscious people don't get therapy. Second, Medicare does not provide on-going therapy. I think it something short like 30-days a doctor can put a referral in for. The therapist can then request an extension. I've done this. It's too short of time to learn walking. This is one more issue for me to work on alone.



Fine motor skills are good enough for a pass. You can read this, can't you? I'm using only one finger, but that is all that is needed. An Occupational Therapist (OT) will tell you I need more, but they are used to funding being cut.



Obviously my cognition is off the charts or I wouldn't be writing this.

______________________________ 

Services for this population are piss-poor in this country. There is an underlying discrimination of disability. This probably affects that.

I am not conscious. Again, this is probably due to discrimination. I have a brain injury that makes me a "retard." I may be a smart "retard" but I am an unconscious one. That makes you better than me.

Since I cannot get consciousness any other way, I ask for a Presidential Pardon, https://www.change.org/p/president-of-the-united-states-declare-angela-conscious. Being made conscious will improve the quality of services I receive.

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.



  

We Have A Problem

First off, there's issue with "soul perfectly in tact, but can't get the words out." Isn't that aphasia? Maybe he's talking extreme. Isn't that Locked-In Syndrome (LIS)? LIS is documented. A movie was even made (subtitles are in English).

Here's the  bigger issue, though...I'm not conscious. What he says about damaging one part of the brain happened here. My parts are not only damaged,  but are dead. I was listening to a radio show once, and a doctor gave reference to me and said "80%." So 80% of my brain was dead. No one is sure why I woke up. Well now, regarding what this person above says, I'd like to think I still speak English.

I've previously explained what I thought happened. Another scan of my brain will have to be done. As it is now, I'm writing and giving commentary with enough brain to barely stay alive.

What I Have Learned

[This goes  with http://thoughtfulveg.blogspot.com/2011/08/description.html. "Developmental stability" is a doozy.]

I have learned I am not conscious. I don't say "unconscious." There is conscious and unconscious. Then there is this third state. A vegetative person has their eyes open, has sleep and wake states,  and a lot of brain damage. They are not conscious. After a  year in this state it becomes permanent. https://en.wikipedia.org/wiki/Persistent_vegetative_state  So I am permanently not conscious.

I'm going to contradict this. I have always been conscious. I was unable to move to respond to my environment. This even includes blinking. I have recovered somewhat, but I am still unable to move in some aspects.

Not being conscious is the main problem. It prevents further study because I am permanently not conscious and will have no improvement. So no time, energy, or money should be spent on me for recovery (and somehow this is also translating to research).

Lucky for me this is what I used to do. I am with myself 24/7. I'm just not as mobile. I can sort of provide therapy, at least the early therapy. (I did  ages 0-5.) I used to think I just needed to get myself to a toddler, developmentally. Well I mostly talk and push to a stand. Sounds like the development of a toddler. I do this all non-consciously, though. No therapy can make you conscious.

I'm either savant or very smart. The savant has incredible neuroplasticity. "Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/  I continually have made progress. I have never "plateaued" as the therapists say, or my condition never reached no improvement.

At some point, I should have gone from PVS to  MCS.     

"...some of them might recover...and not get adequate therapy." Not getting adequate therapy is what I am experiencing now.

This also happened...  "The minimally conscious state (MCS) denotes a specific level of functional recovery of severely brain-injured patient." http://www.jci.org/articles/view/27021 "The nerve fibers from the cells were severed, but the cells themselves remained intact." http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm What appeared to be dead wasn't. The wiring was just gone. It has just taken this long to rewire (and maybe other things.)

I do know this is slow. I'm on a glacially slow track. If it has taken me 10 years to get this far, then where will I be in 10 more years? I do know  that this "savant syndrome" or whatever you want to call it is not fully formed yet. If it's like the other, then I have a  few more years. That's okay. I can use the  extra neuroplasticity.

(Extra neuroplasticity is a therapist's dream. There are no plateaus. Just keep doing the exercises until the next developmental level is reached. No exercises is no progress.)
  

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Then there's this medication that was given to me.... It's suspected of causing brain growth. It's also suspected of causing increased cognition. I was in a controlled environment. My diet is controlled as I receive  a prepared formula via a feeding tube. That sounds like a human trial. Someone just needs to put it together from my medical records. The hard work is already done.

 ----------------------------------------------------

Neurogenesis may have happened. This is where a new brain scan would be handy. Then you could see what part of the brain is functioning. Remember I was in a coma and on a ventilator. Only my heart was beating. That indicates only part of my brain stem worked. (The brain stem also does breathing, and I could not do that.) So, I only had brain stem as functional brain.

If all of this that I am doing comes from my brain stem, then that re-wired to do everything...including speaking and standing. That would be a first, but I doubt that.  More likely it was neurogenesis, or my brain regenerated and is doing this. That would also be a first. Both situations have never happened before and this is why people who know me are in awe.

Pushing to a stand and slowly learning to speak indicate brain growth. It is something we see with children. The brain stem does not do this. This is what I see happening in me. It is different from childhood growth in that it is much slower and the sequence is a bit different. This would be neurogenesis at a low level and then the brain growing slowly as it does.

What a long strange trip it's been. I can only document it.

 

----------------------------------------------------

8/27/2015

 

Instead, I am going from PVS straight to consciousness. That's like going from 1 to 5 and leaving out 2, 3, and 4. MCS, Minimally Conscious State was in between. It completely gets left out now. I did go through it, however.

I did get classified as something that can fit, but it's not official, "semi-vegetative." If one is only part vegetative, then they have to also be part conscious. If you ask me, it sounds the same as MCS. It's easy for someone to say I went from part consciousness to being fully conscious.



Proof of Limbo

UPDATED   9/13/2016

People don't understand when I say I'm not conscious. There is conscious and unconscious. Then there is a third category- vegetative. I had a brain injury, then surgery, and then a coma. When I opened my eyes, I was classified PVS, persistent vegetative state. I did not talk and stared off into space.  At the last hospital I was in I was put with all the "semi-vegetative" patients. This mental state is eyes open but not conscious. (Sounds like a zombie.) Obviously you are reading this, and can see I have gained back mental function.

A person usually dies before they can get better in this state. This happened to me so long ago, and I eventually did get better (very slow and I did not die). Problem now is this condition was made permanent. So I am permanently not conscious.

Acquired savant syndrome is caused by a brain injury and is very rare. This can't be confirmed in me as I am not conscious. Savants are in such great need, yet politics interferes with this, too. I can't be studied until I am conscious. This "story" is #123. Yes, there is a massive amount already. I manage to type all of this with one finger. Again, this would be like a savant. Not studying sounds like "cutting off one's nose to spite the face." http://en.wikipedia.org/wiki/Cutting_off_the_nose_to_spite_the_face

Recently an experience was "debunked," http://www.theatlanticwire.com/entertainment/2013/07/proof-heaven-author-debunked/66772/ To each his own and the freedom of speech. Experiences are experienced by a single person. I wouldn't want to be the one who comes along and says there is something wrong with what you experienced. You are basically saying there is something wrong with the person.  I can only attest to my own experience. I don't want to ruin a person's understanding of their self. That could be detrimental.

I would say I am conscious. I have been all along, even when I couldn't move. I would also say I am doing extraordinary things. That is not the case, though. A letter was even sent to Social Security back in 2003 by a doctor, http://thoughtfulveg.blogspot.com/2012/11/competent.html They deemed me still to be vegetative, but I could handle my own money. I couldn't talk then. I talk now. I'm still vegetative. I live on my own. I'm still vegetative. I write these. I'm still vegetative.  I somehow managed to get custody of my children and not be conscious. It's funny a not conscious person can follow those rules. I'm still vegetative.

I invite "debunkers" to look at my case. Problems will be found with it...but not with me. Problems shouldn't be found with my experience. Oh, I may have spelling or grammar errors on stories. I may have some of the  biology/neurology or law wrong. If it's real bad I can be a weenie and say, "What do you expect from a not conscious person?" That is the problem. I am not responsible for what I do or say. I am vegetative.

"Limbo" is a place between Heaven and Hell in Catholicism. It might be a reference to the book Proof of Heaven. "Limbo" is also a game.