Thursday, May 9, 2013

Who Let Her Out?

This is funny to me. I'm not really following the protocol. I definitely don't fit the terms anymore.

This is what I looked like when I opened my eyes.  Actually, I looked worse at first since I couldn't sit. (I was laying in a hospital bed, on a ventilator, and could only open one eye.) I would watch her on TV, and nurses would compare her to me.

This person was PVS and so was I. We both had feeding tubes. I think her brain injury was caused by a heart attack.
I got more skills and started behaving like this man (after his stroke):

(There is a lot in common, like the one eye blinking and the writing. I wonder what would have happened if he lived like I have continued to live,)
I got a few more skills and now I'm a Talking Head with an arm.

These people in the videos above shouldn't be let out of the hospital. So how did I do it?

Maybe I've got ASS (Acquired Savant Syndrome). I wrote about it, but haven't been found to be. Maybe I'm just very smart and lucky.
People on networks I belong to have said they were "vegetables." They were most likely MCS (Minimally Conscious State). Rarely is the PVS (Persistent Vegetative State), as seen above, sent home. Sometimes there is a caregiver at home (thank you to those of you who do this, because your loved one can't say that). PVS are usually sent to a carehome. I've been to a couple. They die there. I came close, but I could navigate the system. It wasn't easy, but I got out of the hospital system. (It took years.)

Some know what I mean when I say I do a more medical Independent Living now that I'm out. Some of the things in my house look like they came from the hospital. I don't have a regular bed. I have a semi-automatic hospital bed. There's also a feeding pole. It's much the same as an  IV pole. My feedings are hung from it like you would hang an IV. Independent Living itself is not medical. It is the philosophy, I have medical needs, therefor my Independent Living is medical in nature.

This is definitely not the same!
I came across the following video:  (I was in that state he describes right before MCS.)

EXACTLY WHAT HE SAYS! I was in that "grey area." Now I'm talking and standing, and still diagnosed to be in that grey aea. Once PVS is always PVS. I disagree with that. Since I didn't progress quickly enough in consciousness, I definitely don't get adequate services now. If I don't, then others don't either. As a former service provider, I give what I can to myself and others.


As far as going back to a hospital...and it's signed too, so you will get it:

(Don't watch if you oppose the use of the "f" word.)

I was in care 2002-2006. I was shuffled to many different hospitals and nursing homes. If your address is to where you live, then my address was the hospital address. I choose not to live in the hospital. No one "let me out." I followed the rules and saw an opportunity to get out. I'm not going to say how I did it. Just be happy I did.

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