June 19, 2005
Learned Consciousness and Unconsciousness
I have been too deeply shocked by the widespread commentary by bloggers and the press sparked by the release of Terry Schiavo's autopsy report to write about it. I have read the autopsy report. The examining neurologist stated quite explicitly that Terri's state of consciousness (whether she was in a persistently vegetative state or not) could not be determined from an autopsy. However the report also showed that her brain was highly abnormal, and to many, that appears to serve as a justification for killing her by thirst. Yet the autopsy also showed that the parts of her brain that are thought to play more of a part in consciousness seemed to have been preserved. As this post at BlogsforTerri explains, the neurologist who examined her brain was very clear that his findings did not mean that Terri was not responding to her family:
A reporter questioned Dr. Nelson about whether Terri's autopsy results meant that Terri's family could not have interacted with her, as they claimed. Dr. Nelson, to his credit, said quite emphatically, "no, not at all". He again reiterated that pathological studies cannot confirm PVS. This conforms with what other neurologists have observed, that there is no correlation between the size of the brain, or the number of neurons present, and a person's cognitive function.
There are well-known, well-documented cases of patients with incredibly abnormal brains and normal function:
Florida neurologist Dr. Mack Jones said "What is seen grossly doesn't always tell the story." He recalled the case of a patient who suffered from severe hydrocephalus: The patient had "a rim of cerebral cortex" only a few millimeters thick. "And yet", he said, "the young woman by all appearances functioned normally. If her brain were examined at autopsy without a clinical history, one would assume that this individual couldn't have had much useful function at all."See also my prior post about such cases here. It is not just one or two, nor is this some sudden and novel discovery. Lorber conducted a study on over 600 patients with hydrocephalus. In the group that had lost over 95% of their brain (fluid had expanded to fill over 95% of the brain case), half had normal or above intelligence:
Lorber divides the subjects into four categories :those with minimally enlarged ventricles; those whose ventricles fill 50 to 70% of the cranium; those in which the ventricles fill between 70 to 90% of the intracranial space; and the most severe group, in which ventricle expansion fills 95% of the cranium. Many of the individuals in this last group, which forms just less than 10% of the total sample, are severely disabled, but half of them have IQ's greater than 100.If you want to understand something about how little we know scientifically about the nature of consciousness, I suggest you can go here and then here. I can testify from personal experience (I have brain damage caused by a disease which can't be cured and which causes repetitive damage) that one can indeed get into a state in which one must speak aloud to let one part of your brain communicate with another. I have done it myself, and I still do do it when I can't make a connection. I have also learned to pass information visually; often I find myself watching a form of intra-brain educational TV. You adapt. You learn. It is a slow and frustrating process. I have had to learn to speak at least twice (I believe three times, but I can't be sure) and I am absolutely sure that I have learned to read and write three times already. It's very likely that I might have to do this again some day.
Nor is this a secret unknown to medical science. It is called "neuroplasticity", which is a fancy name for the fact that the brain has the ability to rewire itself around physical damage, if constant (and highly frustrating) efforts are made to do so. You have to ping and keep pinging, and you have to provide tangible feedback for this to work. I have been almost totally blind, and I felt a surge of recognition when I read this article about a Magdeburg study done in 1998, in which patients who had suffered severely impaired vision as the result of a stroke were able to improve their vision significantly as a result of retraining therapy. They did it with computer programs:
A specialized regimen of computer therapy can restore some vision loss due to brain injuries caused by stroke or trauma, according to visiting Research Scientist Bernhard Sabel, who is spending a year in the Department of Psychology. Until now, this type of vision loss has been considered untreatable.My point is that scientists know that recovery from massive brain damage is not a matter of regenerating brain tissue, but learning to use what is left. And they know, and have known for quite some time, that to do so requires intense and consistent practice of very small and similar tasks. Only that will provide enough information to the brain to allow it to accomplish the rewiring process. See this article for a more generic explanation of plasticity:
Sabel and colleagues conducted an experiment at the University of Magdeburg Medical School in Germany, in which adult patients who had suffered a stroke or brain trauma and lost major portions of their field of vision were able to regain an average of five degrees of the field. (This is the equivalent of half a page of a standard magazine held at arm's length.) On average, patients improved their vision between 30 and 70 percent above baseline, and some patients who had lost their ability to read regained it. Members of a control group did not achieve similar results.
In spite of this tendency to partition tasks into specialized modules, it now appears that the brain can also allocate functions outside the traditional boundaries--like a creative young child, it can "color outside the lines"--when it needs to. Such instances of "adaptive plasticity" have been found to occur when the brain must compensate for neuronal damage produced by chronic degeneration (as in aging or dementia). PET studies by scientists in Canada and the United States show that elderly people process less visual information in the primary visual cortex than younger people do, but more in the pre-frontal cortex (a nonvisual site). The recruitment of nonprimary cortex is even more pronounced in people with Alzheimer's type dementia. It has been suggested that these compensatory changes may underly the changes seen in task-solving strategies among the elderly. Other PET studies reveal adaptive plasticity in response to acute events (such as a stroke or head trauma) and congenital conditions. Wolf-Dieter Heiss and co-workers at the Max-Planck Institute of Cologne found that adults who had language difficulties (aphasias) caused by a stroke in the language-dominant left hemisphere were able to recruit homologous areas in the right hemisphere to perform language tasks.And since medical science, the autopsy itself, and the statement of the neurologist who performed the autopsy on Terri Schiavo can't claim that she was unconscious, I can only conclude that those who believe that the autopsy justifies Terri Schiavo's death believe in killing the severely disabled in the name of mercy, and this revelation is causing me extreme uneasiness. No doubt it is causing other people who are fighting for the lives of their loved ones similar distress. For example, the case of Scott Thomas, a Jacksonville Florida man, is currently being fought out in the Florida courts. Last year he suffered a brain injury in his own home. His mother obtained legal custody temporarily after his wife wanted to have him removed to a hospice, and now the issue of permanent custody is on the table.
As for consciousness, it is created by enough of a working neural network to be conscious, and neurologists have known for quite some time that those who appear to be unconscious may not be. They know that emergence from coma can be a slow recovery process which for many depends upon the search for any physical response that the person can control, magnification of that response, and outside recognition and interaction with that response. They know that a great many people who have been diagnosed as persistently vegetative, perhaps over half, sooner or later aren't, and they also know that patients diagnosed as PVS can show brain activity in response to stimulus very similar to normal human beings. And so do minimally conscious patients. This paper available for free describes the results of fMRI studies done on minimally conscious patients and concludes:
These findings of active cortical networks that serve language functions suggest that some MCS patients may retain widely distributed cortical systems with potential for cognitive and sensory function despite their inability to follow simple instructions or communicate reliably.In other words, consciousness, or the potential of it, can exist without the ability to demonstrate consciousness. Read the affidavit of Dr. William Cheshire, in which he describes why he believed Terri Schiavo was probably no longer in a vegetative state. And by the way, the autopsy showed that she probably had significant visual impairment, which is an extremely common finding in patients who have been incorrectly diagnosed as PVS. This alone should bring into question the wisdom and medical knowledge of the neurologists who testified in court that Terri's inability to consistently track objects with her eyes demonstrated that she was unconscious. The much maligned Dr. William Hammesfahr noted as the result of his examination that he believed Terri Schiavo had very limited sight. An objective person, weighing the evidence, would realize that the results of the autopsy tended to support the conclusions of several of the neurologists who concluded that Terri Schiavo probably was a conscious being.
And finally, I will copy this portion of Dr. Cheshire's affidavit:
5. There is a remarkable moment in the videotape of the September 3,2002 examination by Dr. Hammesfahr that seemed to go unnoticed at the time. At 2:44 p.m., Dr. Hammesfahr had just turned Terri onto her right side to examine her back with a painful sharp stimulus (a sharp piece of wood), to which Terri had responded with signs of discomfort. Well after he ceased applying the stimulus and had returned Terri to a comfortable position, he says to her parents, "So, we're going to have to roll her over...," Immediately Terri cries. She vocalizes a crying sound, "Ugh, ha, ha, ha," presses her eyebrows together, and sadly grimmaces(sic). It is important to note that, at that moment, no one is touching Terri or causing actual pain. Rather, she appears to comprehend the meaning of Dr. Hammesfahr's comment and signals her anticipation of pain. This response suggests some degree of language processing and interpretation at the level of the cerebral cortex. It also suggests that she may be aware of pain beyond what could be explained by simple reflex withdrawal.So she may have understood what was being done to her as well as feeling the pain of dehydration. Such mercy. Such compassion. Such kindness.
Our society has learned to be unconscious and unreactive to these medical facts, because ethically speaking, those facts would require that we treat patients with severe brain damagely differently than we do. They are incovenient people whom we don't wish to categorize as people. So, in the name of mercy, we kill them.
I would like to add my two cents to this discussion. I can't, at this time, adequately describe all the things I have done to become the person who is capable of writing this. I can tell you with great certainty that at times when I was unable to speak or interact with other people, I was conscious and thinking, although it was occurring in a very abnormal way. I was also aware of pain.
I know with absolute certainty that I made a decision at a time when I was completely unverbal and unable to consistently do much of anything that I would learn how to do things, that I would learn how to form a purpose, and that I would learn how to carry out that purpose. I suspect that a great many people who are called mimimally conscious or persistently vegetative are in the same fix - unable to form coherent purposes and remember them long enough to act upon them. What is called unconsciousness is really a lack of volition or the ability to act on purpose, which is a very different thing from being unconscious.
And I know very clearly that it was a desperate battle to do this, and that to do it I had to learn to initiate one action at a time. I had to learn that washing the dishes consisted in walking into the kitchen, turning on the water, picking up a sponge, putting soap on the sponge, wetting the dish, scrubbing the dirty dish until it was clean, and then putting the dish in a rack to dry. It wasn't that I couldn't walk; the problem was that I was incapable of deciding to walk anywhere. It wasn't that I couldn't wash the dishes, though the order of all those actions was confounding to me - it was that I was incapable of both deciding to wash the dishes and then executing the actiions of washing the dishes.
And the reason that I was incapable of sustaining the purpose of washing the dishes was that I was thinking very intensely, but unable to control the flow of my thoughts. At the time I was struggling to learn to wash the dishes (and I broke almost every breakable dish in the house - the glasses I use are still plastic), I was also thinking about siphons, and locks, and an almost powerless system of extracting water from the ground. If I live long enough, I will try to build that system.
To learn to be the person I am - the person who has a job and earns a living - I had to learn first to isolate reliable areas in my brain and concentrate activity in them. To design things with a physical purpose. Then I had to learn to tell myself stories. Then I had to learn to tell myself a story about what I was going to do, and learn to keep that story in my mind (because I had little consecutive memory). Then I had to learn to do physical things, simple things, like dressing myself and brushing my hair. Then I had to learn to sustain a purposeful decision to do more complex things, such as washing the dishes. And to do that, I had to learn to shut down some activity in areas of my brain that were working in order to sustain a flow of consciousness focused on what I was physically doing. And then I had to learn to bring back up some of the areas of my brain that were working while I was physically doing things, so I could do more complex things.
All of this was incredibly difficult, and still is. I am still learning to see - if I am looking for a pen, for instance, I will not be able to see the pen. It's only after I stop looking for the pen that I will be able to recognize it in my field of vision, whereas if you throw me a pen, I will have no trouble seeing it and catching it. There's a monumental irony in the reality that I am now an excellent driver with above normal reflexes, but I can't find my car keys unless I'm not looking for them. (And don't panic - every day before I get into the car to drive to work, I take a test on the computer which tests driving skills. I am terrified that something will go wrong and I won't realize until I get into a car and try to drive.)
It does not surprise me that IQ tests I take now report that I am more intelligent now than I was when I was in high school. Back then things were easy for me, and now everything is hard and takes six or ten times more mental effort. And it doesn't really surprise me that other people don't understand what it is like to be in this state and to recover from it. What does stun me is that while I have been learning to be conscious of and to interact with reality, society has been learning to be unconscious of and to ignore reality. As far as I can see, in order to write what people are writing about Terri Schiavo that is exactly what they have learned to do. They have learned how to ignore evidence, not see what is obviously there, and believe what is obviously untrue. It takes a willful blindness to conclude that inflicting a death by thirst upon a woman who reacts to pain is kind and merciful.
If you gave me the choice between the two forms of unconsciousness, I would choose mine. You can recover from what I experienced; I am not sure our society will recover from its learned unconsciousness. First it would have to acknowledge its own callousness, and that is a very hard thing to do.
I apologize if there are bad grammatical errors in this article; I have been thinking as I wrote it, and while I am really thinking, language is still gibberish to me. I have tried to proofread it, but my astonishment keeps making me think deeply, and that is probably preventing me from perceiving the errors and correcting them.
Posted by Maxed Out Mama at June 19, 2005 8:38 PM