Tuesday, August 6, 2013

You Better Notice Me Now

"Far too often, patients ... 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."

It goes on, "That’s at odds with a growing body of research showing that many patients with no outward signs of awareness retain some degree of consciousness." http://www.wired.com/wiredscience/2013/02/searching-for-consciousness/

This article points out a problem I addressed in http://thoughtfulveg.blogspot.com/2013/02/get-rid-of-word-semi-vegetative.html "Many patients with no outward signs of awareness retain some degree of consciousness." http://www.wired.com/wiredscience/2013/02/searching-for-consciousness/ The author of the article could see that people in this state were regaining some consciousness. I wrote, "Wait a minute! I was in a whole ward of people who were "semi-vegetative." Were all those people misdiagnosed?" http://thoughtfulveg.blogspot.com/2013/02/get-rid-of-word-semi-vegetative.html

There isn't a misdiagnosis. The problem is with the definition of the diagnosis itself. It's defined as permanent and it shouldn't be. "BOTH PVS AND MCS WOULD BE ON THIS LINE. They are not separate states of consciousness." http://thoughtfulveg.blogspot.com/2013/06/its-on-line.html

That's the problem. It's permanent, and therefor I am permanently not conscious. It should flow from PVS to MCS, and it doesn't. I slowly got better. I was becoming more and more conscious. Instead of moving up the scale of consciousness,  I was belittled. I was the one with a problem and could not get better. I should have gone to MCS not semi-vegetative. From there I could have moved to where I am now.

The following comment to the article is how it was in the many hospitals I went:

"I hate to pop your bubble, but there isn't time for that except in certain research hospitals. In the real world the patient lies comatose until he gets a staph infection and dies $100K later. Meanwhile he is occupying much needed space for no real return to society. 

In theory this is great for government funded research, but a better example is in cardiac care. We need that bed for someone we can make whole again! If you are gorked and are unlikely to recover, we can let you die peacefully by not torturing you with false hope. How many times do you want to wake up in excruciating pain or a drug induced fog when death is inevitable? Hell, we can go all day and night until you can't. 

Obamacare is on the money in the sense that "we all die someday", and that most of the money is spent in the last six months of life. We need to consider the heath of the population rather than the individual who becomes a patient, to make the whole thing work as well as in Europe. 

Your name is written on the patient board in erasable marker for a reason. The sooner you understand this, the sooner you can move on."

It was because of attitudes like this that I left. I got my not conscious self out of the hospital. I wasn't going to use "much needed space." I was "gorked out" and I couldn't get anyone to notice I was slowly getting better. I'd go home.... If anyone noticed there then someone will be sorry.

 (As slow as it has been, I am actually on the fast track. It's been 10 years for me (almost 11). The man in that article was nearly 20.This most likely has to do with a second condition that also allows me to write this. I'm not conscious, though. That can't be explored.)


  1. Change the definition, you will change the attitude.

  2. "You gotta know when to hold up, when to fold up, know when to walk away, know when to run...."