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my little mouse of consciousness
by chris at 10:28 AM on March 24, 2005
I often find myself surprised at the quantum nature of life as most of us know it. People around me are either alive or dead, and it's fairly easy to tell the difference most of the time. I often wonder how it is possible that people remain in fairly stable highly functional states for decades. People go through cycles of happiness and depression, but it's not like they stochastically forget how to speak, how to respond to others, how to put two and two together. Once the system is booted up, it usually continues to function in a highly predictable way, for the majority of one's life.
The exceptions are at the margins of life. For me, this means small infants. I have no idea how to operate a small infant, how to talk to them, how to understand them, but I know their condition is temporary. This also means people near the end of their lives, people who forget how to speak, people who no longer remember who you are, or how to do even the simplest things. And the last edge can befall anyone, as it includes people with mental illness, or people with an injury or defect which prevents them from functioning at a level most of us understand or are familiar with.
I know I'll spend most of my life, taking completely for granted that I will understand how to interact with the people around me. I realized this simple fact while leaning over my mother, a vibrant, energetic 56 year old woman, as she lay in a hospital bed with her eyes closed and her mouth slightly open. I looked into her face, touched her shoulders, and said, "Hi Mom." Her eyes opened just half way, and then closed again. There was nothing further. I didn't know if she recognized my voice. I didn't know if she was asleep or awake. I didn't know if she was responding to me. I had seen a small spark, but it didn't last. I spoke some more, but she didn't open her eyes again.
It was a terrible feeling, realizing that I didn't know if she was alive or dead. Her body was warm, her heart was beating, but I could no longer quantify the state of her consciousness. She wasn't present, but she wasn't completely gone either. She existed in a place, in a state, that I didn't understand, and it hurt. As I walked to the car through the parking lot, I broke down in tears.
She had gone in for a routine surgical procedure, and recovered from anesthesia, but had then suffered a major stroke later that night after her surgery. So she was in a semi-comatose state when I saw her. The doctors were not very optimistic, but I think it's part of their training not to encourage false hope. I was comfortable with that, as I want information, not speculation. Her life was definitely over as we knew it. I hated returning home from the hospital to see a folder of papers on the passenger seat of her porsche as it sat in the driveway, realizing that she would never work on that project again, yet when she placed it there and drove home from work the day before her surgery, there was no way for her to know that she would not be returning to it.
Things went well for my mom, considering the magnitude of her stroke. She eventually recovered consciousness, and her condition has been quite an adventure ever since. Her neurologist said she would never walk again. Yet last week I hiked with my mother among the grapevines in the luscious hills of California wine country (she walks several miles a day). We had a long conversation about the meaning of life, and I had only a minimum of word salad to contend with (many stroke patients have lingering language effects, referred to as mild aphasia).
I could write endlessly about my mom, but my purpose here is to illustrate my first visceral experience realizing that people (i.e. an otherwise healthy person) can exist in a state that is somewhere between life and death, and how unprepared most of us are to understand what to do about it.
The reason I'm thinking about it this week, is because I've been struggling to understand the case of Terri Schiavo. Specifically, I've been trying to understand the difference between the language we hear in the news - that she exists in a "persistant vegetative state", and the video footage of her reacting to her family that we also see on the news. How can she be considered "vegetative" if she shows otherwise recognizable signs of life, such as facial expressions, reaction to touch, and vocal utterances? Is the dilemna of what to do with her a matter of being able to quantify her state of consciousness? Of being able to quantify a level of brain activity?
In her case, according to Florida law, the dilemna is not a legal matter. If a person can't make their medical decisions known, it falls to the spouse. Her spouse insists that she would not have desired a feeding tube, so it has been removed, and she is slowly dehydrating.
The deeper issue, it seems to me, is how we approach whatever life is left inside Terri. Her parents are advocating to let her live, as they recognize something within her, that few other people can see.
I've been surprised at the lack of medical evidence available from the media to quantify Terri's existence in any kind of meaningful way. I've heard that people in vegetative states do all kinds of spontaneous movements that look specific, but are actually completely random, devoid of any specificity, and which add up to no more than generalized spasms with no brain activity behind them at all. Is this really true? I had my doubts. It's easy for doctors to speak authoritatively on subjects with little definitive evidence to back them up. And so it was that I searched for, and found little video clips of Terri Schiavo, so I could see for myself. I watched them in detail. What I finally came away with, was that I think Terri was capable of responding to certain kinds of stimuli, but the response was very minimal, not necessarily reproducible, and thus minimally specific.
But it was a response, and as such I could understand her parent's unwillingness to let go of her. As someone trained in understanding biological systems, I want to understand what she is now. How many neurons does it take to make a person? What happens when a fully grown adult with a complex brain, breaks down and ceases to exist in the quantum state of consciousness that we are familiar with? What if Terri Schiavo is a broken assembly of partial subsystems, which only function at a basic level based on her first 26 years of training? What I mean is, what if she can recognize her parents voice, but she is unable to process or act on that information? What if she can respond to her face being touched, but can't conceive of what her face is?
Humans have complex eyes, such that we can see many colors and make out complex patterns in the world around us. Many insects which look like they have eyes, actually have something called a light spot. It functions only to indicate the presence or absence of light. I feel like I can almost imagine what it would be like to have a brain which functions at the level of a light spot in comparison to a complex eye. Such that I can imagine mental activity in my head without the ability to put it together into a thought, or to apply language to it, or to even respond in a coordinated way to any kind of physical stimulus. I can imagine having a broken mind where sometimes I think I perceive a stimulus, and sometimes I think I can try to respond.
I think in general, acceptance comes through understanding. Thus for me I want to understand what's possible in a continuum of consciousness between a large bundle of cells with no response, and the emergent behavior that emanates from great thinkers, loving family members, or even my pet cat.
If my existential existence can be described as the impact I make on the world, as in the way I make a clay bowl is unique, and my essence is contained in that uniqueness, as if each of us is encoded by the trail of imperfect marks we leave behind, how much existence is left within Terri Schiavo? The only person who can answer that question is Terri herself. And for that, we can only rely on her spouse telling us what she had expressed in the past.
I can accept that she might have said if she were ever to find herself at such a level existence, that people disagree on whether she actually exists at all beyond a heart beat, that she should be allowed to die as she wished.
However I can also accept that her parents want to cling to the only thing they have left of her, even if it is only an uncoordinated response of a few neurons. If they're willing to care for her, it's difficult to force them to give that up. Perhaps if they could see, in some quantifiable and objective way, that she has no more neural activity than a small mouse, with no hope for anything more, they would be willing to let go. I don't know if it's possible, even by quantifying such things through science, to get a parent to let go.
comments (12)
As a caretaker and parent of someone on the early edge of your "margin of life" I can certainly attest to how easy it is to mistake random biological/mechanical functions as containing a greater significance. There are at least 10 times a day where I look at my daughter and ask "Does she know what she is doing?" Like, for example, yesteday when she realized for the first time that she could go around an object, instead of trying to go over or through it. Or, at least I think she realized that. Or, a couple months ago when she started saying "dada" whenever she saw me. Or, at least I thought she was calling me "dada."
It is obvious to me that she doesn't understand any percieved significance of what she is doing 90% of the time. But, it is also obvious that she is learning the significance of things and actions every day. On the other hand, Shiavo has been in a roughly similar state to an infant for 15 years, and has not improved. From what I read her condition has deteriorated in the four years since the videos we've all seen of her on the news.
Do I think the government should decide her fate? Absolutely not. But the doctors most familiar with her case say she will never get better, and her husband (who is assumedly respecting wishes) says she wouldn't want to live this way. Who am I, or you, or President Bush to disagree?
by mg at March 24, 2005 12:11 PM
I've heard that her condition has deteriorated as well. And I think it's pretty clear that she will never get better, never even be able to grunt in response to a question, never again even know what langauge is. Yet I'm astonished that there isn't some better way to speak about it in a quantifiable and objective way (maybe this is a sign that I should go into brain research!).
I certainly don't want the government involved in her fate. I think her parents should accept the law, that her spouse has made the decision, and that's it. Or they should challenge the law, such that if there is a family dispute (i.e. husband vs parents) there needs to be a way to resolve the dispute.
I wish her parents would let her go, but they seem willing to take care of her, and forcing them to let her go because husband trumps parents in the authority chain seems odd.
by Chris at March 24, 2005 1:47 PM
I've always said that if I am ever in a condition in which I can't function as an everyday, normal human being, that if I can't communicate my feelings either vocally or through hand gestures, or using my eyes, or whatever, that if I'm in what the doctors call a vegetative state, then whoever is in a position to make the decision to cut me off, should just let me go.
Even if there is a small possibility, twenty years down the road, that I might suddenly awaken and wanna know whether or not England won the Union World Cup... Just unplug me. There was a program on Sky One about a guy who was in a coma for 20 years or so, and he woke up, I just Googled and I found this:
http://www.dailyiowan.com/news/2003/07/10/Nation/Arkansas.Man.Wakes.Up.19.Years.Later-446716.shtml
I'm fairly certain it's the same man the programme was about. I also think in this, the information age, stories like this one give false hope to the families of people in similar conditions. Like lottery stories that drive people to buy tickets, "They won it, so could I." Regardless of statistics, people are winning, I could be one of those people. The most insignificant events in peoples lives are readily available, and you have people who, having experienced something, quickly find somebody else that has experienced the same thing somewhere else in the world, a horde of coincidences the world over being misread, or being read into, driving people to see the world as a much smaller place. "They said this man would never wake up, and look he is awake." In total probably a small number, like 5% of people, having fallen into a coma have woken up, but to a family with a loved one in a coma that had may as well be a 100% stat, it's hope.
I can safely say that even if I could feel the touch of a loved one but could only respond in a way that they could never understand, I’d want to die. If my eyes had been replaced by a light spot, I’d rather die, and if my neurons were still going about their business enough for my consciousness to still be, I’d want to die. Maybe after four, fifteen, twenty years of being tube fed, I wake up, that’s four, fifteen, twenty years of somebody else’s life I’ve stolen as they keep an eye on me, keeping a vigil over me, and hoping for me. I’d rather die.
Very interesting, insightful, and fascinating post to read Chris. Thanks for that.
by Ex Crimson Guard NCO at March 24, 2005 2:10 PM
I can't pretend to have an informed opinion on such weighty matters. But my wife raised a good point: When she dies, and it won't be long now, there's going to be major guilt plaguing the only guy in the group who's campaigned so fiercely to let her go. Not guilt based on logic, but visceral guilt just the same. One never knows what might have been once the final step is taken.
And Chris, I can relate. My best friend died with his head on my lap inside a mangled Cadillac. That moment when life leaves someone is...is... there's no words for that.
by anna at March 24, 2005 6:34 PM
Well at least you put it in writing ExCGNCO. So if we hear you've gone veggie on us, after a collective deep sigh of regret, Bad Sam might show up as a legal document to pull your plug. Imagine that. ("I left my living will in the comments section of a blog").
I think the brain is not so intractable that we can't someday distinguish those coma patients that will wake up and those that won't.
Very sorry to hear about your friend Anna. That must have been a terrible experience.
by chris at March 25, 2005 3:12 AM
You think you'll get past it one day, but you won't. It's indelible. BTW, you once again used a word I don't know the meaning of. Guess which one.
by anna at March 25, 2005 7:53 AM
Woops. Sorry about that Anna. by "veggie" I meant if ExCGNCO ever finds himself in a persistent vegetative state :)
by chris at March 25, 2005 11:28 AM
If this is gonna be where they look then.
All my belognings are to go to that crazy ass dude who strolls around Queen's Gardens reciting jokes to himself, and who occasionally flips out and chases kids. AKA: Bin-bag Man. You know who I mean if you knew me. He used a plastic carrier bag to do his John Wayne on a horse gag, "What's this?" He asks with the handles hanging from his ears, "Dunno you odd mo-fo," I reply. "It's John Wayne on a horse," He chuckles. Pulling one of the handles from his ear he asks again, "What's this?" I'm looking over my shoulder chuckling but still trying to get away from the guy, "I dunno, just fuck off." He laughs, "It's John Wayne on half-an-horse."
To everyone I knew, you all sucked btw, more than half of you owe me money, some owe me sex, and others pwe me pints, still have my books, never returned my Cranberries CD... I'll find out which one o' yous has it, s'been eight years now... I shall haunt you! Don't go playing any dodgy music at my funeral, it's "MY" funeral, and I'd just as soon you all sat in silence for an hour. *Cackles* :)
by Ex Crimson Guard NCO at March 25, 2005 12:43 PM
Stealing your Cranberries CD is the best thing to ever happen to you. Zombie, zombie, zombie, zombie. Argh.
by anna at March 25, 2005 6:33 PM
The Cranberries did suck didn't they, but... I paid for the CD! Even if I wanted it back just so that I could stick it in a microwave and watch the blue sparking and bubbling surface of digitally recorded crap, that's a good enough, that crap belongs to me, my property is tainting somebody elses CD rack, it should be tainting mine. Heh.
by Ex Crimson Guard NCO at March 26, 2005 3:56 PM
If anything, this topic makes me want to fill out a living-will. Even if I'm only 27. Nice, well thought post, Chris.
by MrBlank at March 26, 2005 6:33 PM
Terry Schiavo's feeding tube wasn't removed only on her husband's word that she would've wanted it. Her husband actually asked Florida courts to decide what her desire was regarding the matter, and a jury ruled that she would not have wanted to be kept alive. So, her husband is really only fighting to have the ruling enforced.
While it's very sad that her husband and her parents disagree about what to do, there is a ruling which says that she herself would have wanted this to happen. It is sad that people who don't want her to die are disrespecting Terry Schiavo's wishes for herself.
by jean at March 29, 2005 7:06 AM