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Saturday, February 02, 2008

Lauren Marie Richardson

She could be me, honestly. Good God, I looked at the YouTube video, and we even look somewhat alike.

I have been unable to speak, paralyzed, blind and a drooler, which she is not. She looks to be in somewhat better condition than I was at my worst.

I had the swallowing problem, but I can assure you that I now eat by myself. I was illiterate, but now I'm not. I was extremely, awesomely, incapacitated, but now I'm not.

The diagnosis of PVS is not a medical reality. Given time, many people in this condition will improve. Given time, some of them will return to a state indistinguishable from that of a person who was never a drooler.

My belief, having been there and done this, is that very few people in PVS are actually unconscious. The video posted makes me think that Lauren cannot be. There is very good medical evidence to support this idea. Every time someone does a study they find that those who survive do in fact have a lot of brain activity. Especially with therapy, many of these people regain the ability to communicate. The more studies reveal this to be true, the less the studies are done. We are coming up with unpleasant answers to the questions we ask.

To be routinely inflicting death by dehydration upon these people is awesomely cruel, because most of them will suffer a completely agonizing death of which they will be quite aware. If you don't believe me, try not drinking anything for a few days. You will discover a level of pain that you probably did not know existed.

By the way, I suffer from an active neurological disease, and therefore my prognosis is poorer than that of someone like Lauren Marie Richardson. However, with time and treatment, I continue to improve. In fact, the doctor is now making me do the normal middle-aged medical things. For a long while, I lived in a medically-futile paradise in which matters such as cholesterol, PAP smears and the like were not an issue. Frankly, I find the current situation less dignified.

The Golubchuk family is right. We are no better than Nazis if this is what we do to the disabled. That is all this is about. It's about killing disabled people. It's not about death with dignity, because there are no "dignified" deaths. Death is an unraveling, a disintegration. On the other hand, there is no life with dignity. We all have to get up in the morning and take a crap, brush our teeth, etc. We do not live in stainless steel bodies immune from pain and hardship. Babies don't live dignified existences, mothers giving birth are not "dignified", and when I have my mouth open and the dentist is prying around in there I don't find it dignified. I will not even touch upon my feelings on the subject of the gynecologist's visits.

If the father is allowed to take Lauren and care for her, she may one day be telling you her story. Or she may worsen, and slip away. One thing however is certain - our society will not have allowed a cruel and slow murder, because the judge has granted permission for that, and the mother would not have sought it if she wasn't thinking of doing it.

I am alive because the Chief cared for me through the worst of it, and refused to ever write me off. I am alive because the Chief refused to concede my inevitable death. I am also alive because the light decided I should live, but the Chief, shall we say, was the enabler. There is perhaps no better way to convey the depth of my disability at the worst than to explain that the Chief never knew I was blind, although my dog did.

The joke of it is that the Chief is now alive because I, restored to normal life, nagged him into having the tests that detected his own impending demise and allowed intervention. The Chief used to live a much quieter existence with me. Logically therefore, my "incessant nagging" is entirely his own fault, a point which I will have to make clear to him next time he complains.

People who think death by dehydration is dignified are fools and cowards, but living life as a fool and a coward will rebound upon you in the end. At this point, I am afraid neither to die nor to live, although I do wish the doctor would relent on the issue of routine medical care.

PS: In a really bizarre turn of events, I came out of the drooling world smarter than when I went in. No one seems to be able to explain this. I went in with about a 140-150 IQ, and I came out with 160-170. My guess is that I had so little remaining functional brain left at my worst that I evolved an extremely efficient method of using what I had, and that as I got more back, the functionality of the method remained. I may have less working space then I used to, but the way in which I use it is clearly more efficient. I do not think in language at all. Everything is mapped into P-Nat.

When I was in my late teens and early twenties I was fascinated by computers, languages, and the growing controversy over whether true AI was possible.

In my early twenties, as I was descending into oblivion, I spent a great deal of time working on a program that I thought might be able to evolve the ability to literally think in simple yet original ways, and perhaps have the capacity to evolve a higher intelligence in the same manner in which I believed mammalian intelligence had evolved.

Basically it's a very simple program that starts at the level of points on a screen. From there it can see if they seem to correspond to a line. For three dimensional objects, it compiles a bunch of those. For four dimensions it adds in another axis.

At the time I was in a lot of physical pain from nerve damage, and one of the ways I coped was just to sit for hours and hours, trying to figure out how I moved around, compiled a mental map, etc.

Since the last little bit of contiguous active consciousness I was able to maintain was and is all expressed this way, I am guessing that I was really stressing one part of my brain that mostly had to do with movement, and that that piece of brain eventually became all that was left of my consciousness. But certainly that was how I was thinking, and really how I still think. I recovered the ability to use language but I don't think it works very well. It's for communication, not for thinking.

I am going to rewrite the program in Java, I think. The original was in APL, but that is a rare language nowdays. Too bad. It was a superb language.
Having been given a maximum of two weeks to live in june 1966 by the best specialist on the west coast...I tend to agree with Mom.What an incredibly ugly mess.
Oh Mama, I was moved to tears as I read your post today. I knew from prior posts that you had had some physical challenges, but I had no idea you have gone so far and come back even further. I so want to give you a very, very, very big hug today.
You are really the best!!!
Your story is amazing! Thanks for sharing. I found you through coyote blog.

Yes, it's all about killing disabled people! I am totally dependent on the care of others and thank God I have a husband who cares for me.
I'm speechless.
What a story!!! I was starting to think Chief was another silly stubborn man, but two candy bars and saving your life... he's almost as special as you are! Hope you are having a great weekend!
Viola - nah, being ill does not get you merit points. I may not be the worst, but I'm not even kissing cousins with "the best". One clue (upon which I am darkly meditating) is that I should be grateful to have graduated to the non-futile medical care status with Doc, instead of brooding upon the dark injustice of being asked to do it.

Seems to me that the Chief would be further up on that scale. Vide Tom. There's tons of "medically dead" people walking around this world, and an awful lot of us are crowding up the sidewalks due to other people's graces.

Tom, glad you are still with us! Like I emailed you, we are both second lifers.

Karen - a major bow to you and your husband. I'm sure you have black moments like I do. Remember that you may save his butt one day as well! The odd thing about the Chief is every once in a while he announces with great sincerity that he is lucky to have met me. There is no understanding men, I have concluded.

Gayla - he's stubborn as heck, but absolutely not silly. Never silly.

CF - heck, you knew really. If you think about this seriously, you'll figure out why I find some recent developments cosmically hilarious and astounding.
Mama, while being ill may not get you merit points, having a strong spirit does. I have walked away from your blog today with a deep appreciation for who you and the Chief are. Thank you for sharing this story with us today.
MoM - re your comment to Karen - men and women aren't supposed to understand each other. They are, however, supposed to appreciate each other. :-)
MOM, please forgive my transgressions of a few months ago when I foolishly tried to pass on advice from my own limited experiences on how Jay would be feeling after getting out of the hospital. I stand chagrined and corrected.

At a gathering at a friend's house recently, the conversation drifted to the group shaking our collective head over the number of Americans that we knew that had a sense of entitlement or felt that they had it hard in life. My fiance, who is a naturalized citizen but grew up in China, stated that her parents had spent time in "re-education" labor camps and that these people didn't know what hard was. After a stunned reflective silence, someone piped up and stated to Kathryn, "you win."

"You win" MOM.

On the topic of understanding men or women: I once had a conversation with a very good friend of mine, who happened to be gay, when I was having relationship problems. To quote John, "Honey, if it makes you feel any better, I don't understand men either, and I am one."
Andrew, I thought your comments were helpful. After all, one thing I am not is a man, and Jay's and Cheryl's experience is quite different from mine.

Btw, they are doing well. Jay still has to recover all his stamina, but he has resumed normal daily life. But now normal daily life is awash with joy for them.

I am honestly not trying to "win". I'm just trying to point out that declaring people dead and then making them so by depriving them of water and food is not a dignified, honorable or humane thing.

If a society loses its respect for human life, a society will walk down many destructive paths. Every human being is inconvenient at some point in his or her life. Most of us are inconvenient during two stages - youth and age. Everything that we have of use in the West is really founded on the idea that human beings have an inherent worth, and that human life is to be respected. Whenever we shift away from that, the ramifications are far-reaching.
"Everything that we have of use in the West is really founded on the idea that human beings have an inherent worth, and that human life is to be respected. Whenever we shift away from that, the ramifications are far-reaching."

Amen MOM.

Having also been in a vegitative state, albeit only temporarily while I was in the ICU, I have no arguments on that one.

I wasn't trying to say in my flip comment that you win the argument, this is one argument that is on-going in society and most definately needs to happen. (Probably in the context of whether or not we're going to offer universal health care - another big item on my human dignity list when most people can't afford basic insurance or end up going bankrupt when something happens.) What I was trying to say was that, compared to you, I and most other folks haven't yet earned the right to complain and should stop being scantimonious about it.

However, I *do* wish you'd give me a hint next time I've said something stupid or inserted my foot in my mouth. ;)
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