Saturday, November 30, 2019

Magic 15







It has now been 15 years since I had procedure and brain surgery at Stanford to basically save my life. Maybe it was thought that I was going to get a few years, but not 15. So they have something!

15 is a good solid number. When something has happened for 15 years, there is a good chance it won't end soon. It can, but why did it happen for 15 years already?

15 is also a magic number in numerology. Numerology is old. It goes back 4000 years (from my browser).



"Angela" is a form of "Angel."
This number is even more magic.

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"Among scientists' most fascinating subjects of study are a small group of enigmatic talents, the so-called savants- The knowing ones."  (2:16  this second video). 



I'm not diagnosed as this. No, I am diagnosed as being in a coma. The answers to why I am now doing this are probably in this disorder. I was made vegetative when I opened my eyes. I became semi-vegetative when I started talking. Vegetative is just a coma with the eyes open. That doesn't describe this!


I first had a stroke. Then I could barely move.  I couldn't talk back then. I do some speaking now, but a majority of thought is written. (Not able to speak but able to think can be called Locked-In Syndrome.)


In that savant video, Dr Treffert attributes genetic memory as responsible. I disagree and go with Carl Jung's theory of Collective Unconscious. Today, people say Collective Conscious because the New Age made them aware of these things I guess.

The Collective Unconscious is one of Jung's spookier theories. He suggested there was a large shared memory we all access. I go with this one because I'm not related to similar people. This makes me spooky.


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I did lots of thinking like in that The Diving Bell and the Butterfly movie. That happens when you can't talk. I have much in common with Jean-Dominique Bauby's disability, but I went on to get better. He passed away right after his book was published, the above movie is the same name. That massive amount of thinking has remained with me even though I now talk.

Bauby was 18 years older than me. He
had his stroke the same year that I gave birth to my second daughter. There is no genetic link and I did not know of the man until the movie. A large pot of shared knowledge makes more sense. Medical staff and technology developed from other than genetic memory.

Ooo, spooky! Ooo, that's life! It's only spooky because you don't know. 

Everything else looks good. I use Dr Treffert's work as a guide for what I am experiencing. No other theory has been developed.


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Somehow I "know." That's spooky. Somehow I know my 15th year will be magic.





Wednesday, November 20, 2019

This Isn't Fair, so I'll Even It Up.



The people on Twitter got to see only the first part of my Facebook post. Here is the whole thing. I told you that my cognition is up there. You can see.
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I know this is public. It's me thinking n not advice.
It's possible that I gave myself something like a spinal tap during the bleed. After going everywhere, the blood ran down my neck. Think about it...What bone is in the neck? The spinal column. Spinal stem cells could have been released.
Then there's the whole business of clearing the cerebellum of an AVM n scar tissue. That can be a re-start. 
Each treatment had radiation. How much radiation was there collectively among all treatments? 
Yes, this Hawking quote made my eyes get rly big... n it's only been 15 yrs. Since there was radiation, we now get into things like half life, which is long n beyond me. Is that why I look young?



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I'm vegetative.  My diagnosis is Semi-Vegetative if that paperwork is found. If not, I have the original hospital stating that I am "decerebrate," braindead. These are then the thoughts of a brain dead person.






Thursday, November 14, 2019

Conscious 2.0


For the last 10 years my consciousness has been online. This sounds preposterous, so I will explain. You are reading this. You can figure that the person writing is conscious. You are most likely reading this on the internet. 

At the time of writing, my body is in a hospital bed. The bed is located in my bedroom in my house. My body is diagnosed vegetative. 

I have a laptop computer on an over-bed table. I use one finger to type what I want to say. What I type is on a blog program that is on the internet. 

Although I type out thoughts and feelings, I am vegetative. ("Semi" was added but it means nothing.)



I am a real-life Max Headroom.

This was a fictional character from the '80s
that lived in the TV.


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When a person is legally unconscious in a coma (government paperwork is completed and the government provides the care),  these persons aren't legally made conscious again if they wake up. There isn't a form to submit. The few that regained consciousness passed away soon after waking. (I'm in the US.)


I believe there may be one case where a vegetative person was reclassified, but I don't know much  (https://thoughtfulveg.blogspot.com/2017/01/celebrating-weird.html). I was not made MCS, Minimally Conscious State. Consciousness can be regained in MCS. I was made Vegetative, and therefore remain in a coma when awake.


  

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This is all done with forms and
there is no form for waking up.
They are also SLOW!




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I know how to care for a disabled patient. I've done it for years. I've just written down verbal instruction. There is nothing magic about the topic. I come from special education, not medicine.
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People have told me to get on with my life. Easier said than done. In a way I have. There are well over 400 essays on the internet. I am also published in a magazine. I remain in a coma, though. It's hard to get on with your
life if you are not a live, conscious person.

I get on with my life and am conscious online.

Monday, November 4, 2019

We'll See What Happens




That was the word used.


"My case will have to go to someone else."
I think it is. There is an up-coming appointment. I'll know more after, but I don't think they ever had a vegetative client who could talk and apply for their program.

I was supposed to die when I was sent home 13 years ago.


There are 4 main reasons that I am alive. Pay attention to the first. Without it, none of this other stuff could happen. I would have died 15 years ago.



1.  I had surgery at Stanford University and Hospital.


I had surgery done as research to shrink and remove a large blood clot. The process took around a month. I had to go in quite a few times. It wasn't just one surgery.



2.  I had to be able to breathe on my own. This took at least 4 years. Only medical staff were trained on ventilator use and respiratory care. Family was not trained.

3.  I needed care staff if I wasn't in a hospital. In previous job experience, I knew of a state program that provided home health aides. These people usually had little training but wanted to learn.

I already knew medications through previous experiences and education.


4.  I had to talk. I was mute when I opened my eyes. Talking went hand and hand with breathing. Words came in the hospital. I guess none of the places I was ever in noted it. The closest is an e-mail a music therapist did that I copied,  http://thoughtfulveg.blogspot.com/2012/02/angela.html
I had to talk in order to give a person direction on providing care. I am the brain. The care provider is my hands and feet.



Finally, this isn't a reason. I'm damn lucky!

I only have a prescreening appointment scheduled. I'm not in any program. This  appointment will just assess my needs. They can see how I am still alive. Maybe I need something. I have to prepare. I have a bunch of questions that may or may not be covered. 






Saturday, October 26, 2019

Remembers When



Juan Torres was found to be vegetative as he did not respond.
This changed.


I was later thought to have Locked-In Syndrome, but I was first diagnosed as Persistent Vegetative State (vegetative). That was the one written down. That is still what I have even though I write this. I also speak, but not as well as I type. It's not exactly PVS anymore. The "Vegetative" was kept, and "Semi" was added. Currently, I am Semi-vegetative. I'm still in a vegetative state.

"What's really remarkable about him, is that he can report information about the time when we all thought he was in a vegetative state," Adrian Owen at 3:37 of the video.

I can do that. That's what this is. I am giving you information about the time in which you all think I am vegetative. Hmm...I'm not really vegetative am I. Then, why am I labeled that way?



I'd like to have parallel bars in my house.



Friday, October 25, 2019

Slow, Glacial-paced Growth: Neurosculpting




Quote
Use "biological" instead of "genetic".


It doesn't seem like genetic engineering with my case. It was neurosculpting. The neurosurgeon is an artist. I was the medium.

The slow, glacial growth is obvious. I have it documented on one site. The others have folded. It's on Flickr and  Facebook has a photo album called photo progression.

https://www.flickr.com/photos/angelar70/sets/72157625839268830/
Progression is seen in pictures taken over years.

Progression is more equivalent  to growth and is taking years.
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I didn't set out to receive genetic engineering. It was more like a biological correction, but I guess it was a bioengineering process.

A couple years before a second brain surgery, I had an AVM stroke, where a large AVM (arteriovenous malformation), blood balloon, leaked out blood, but never popped. You see, these things usually burst. So I had a giant blood balloon in my head, only getting bigger. It could pop at any moment and kill me.

I wanted to take it out. Nobody would touch it, though, because it was too deep in my brain. 

So I lived every day as my last day for nearly 2 years. The initial leaking out of blood was a severe brain bleed that should have killed me. So those 2 years were mainly spent just trying to breathe. (My first year was on a ventilator. My second year was on a ventilator tube weaned to room air. My third year was just an open hole in my neck.) 


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A doctor at Stanford University thought he might be able to get the AVM out. There were a series of treatments ending with a craniostomy.



All of this was successful. Stanford could have that blasted thing that wreaked havoc in my life!

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Those treatments had a bit of radiation in them. It was low level, but it could still change DNA.

My hair got curly. This sounds like no big deal, but I remembered back to a biology teacher saying that hair getting curly could mean there was a DNA change.







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it will be a slow process, because one will have to wait about 18 years to see the effect of changes

Slowly getting  better the last 15 years  is what I  have been doing. I've started thinking that getting better is a superpower.


we will be able to increase the complexity of our DNA, and improve the human race

I don't know about my DNA (just a hunch), but my intelligence and longevity have improved .

You ended up with a piece of art. You have a neuro-sculpture.


Saturday, October 19, 2019

This is Dumb and Stupid



My diagnosis is "semi-vegetative". That's only part vegetative. 

So dear govt, which part of me is still in a coma? Is it my top half or my bottom? 

Am I in a coma when I am sleeping?




This is "Dumb and Dumber". The video clip is the movie. My situation just is.

Oops, I don't swallow barium (for an x-ray). That doesn't mean that I am in a coma (vegetative). Other medical conditions don't swallow. I'm singled out.

Why? What's your problem? Are you dumb, or just stupid?