Consciousness

So I relapsed.

Taken by Surprise

After going through this routine once or twice (three times now if anyone's counting), I imagined that I could easily spot a relapse and dispatch it judiciously. This was not the case. In retrospect it might seem obvious that something was amiss. As I had begun to feel progressively better, I had an undoubted confidence that I was making incremental progress each week. The tasks which I could perform but previously couldn't were easy to enumerate. I had been practicing the saxophone religiously, writing here faithfully, even if not eloquently. Just more than a month ago, that quickly changed.

• On September 25th, my contributions to this catalog of my thoughts derailed. I was practicing so much saxophone however, that this seemed to be merely a reallocation of my time and concentration, not portentous of a precipitous decline in cognitive function.
• Shortly after I noticed that cologne, most foods, and other things smelly became conspicuously less fragrant. Even when the deck of my parents house was being painted, and others where complaining about the odor of the paint wafting in through open windows, I could hardly smell anything.
• Eventually it became apparent that the zealous, frantic progress I had been making on a number of new musical compositions had totally stagnated; additionally, I stopped hearing music in my head with the frequency or clarity with which I normally do.
• Finally when I couldn't listen to more than 5-10 seconds of music without getting lost, had trouble orienting myself with respect to the days of the week, and had stopped playing music altogether and had begun again to lose visual cognition(approx October 30th), I incisively deduced that my condition had begun to relapse!

In reading Oliver Sacks' The Man Who Mistook His Wife For The Hat, I was amused to read a passage in which he relates that when a man loses a leg or an arm, he is aware of it, but when he loses a part of his 'self' he often cannot recognize it, for that part of the 'self' is not there to recognize its own absence. While this might be an overly simplistic abstraction of he physical processes governing the cognition in a sense of identity, my own situation aligns with this observation startlingly well.

When I had relapsed, just as when I initially fell ill (and when I relapsed the first time), it was only when I could point to some obvious fact or measurement that I knew for certain that I was not myself. When I could point to blurry vision and say, I know I could see this clearly yesterday, then I knew I had relapsed. But as for the sense of being: even though the actual sensation of being alive and thinking has changed so much, shockingly swiftly in response to steroids, as I decline, I cannot tell that it is slipping away.

Why is it so easy to notice when suddenly I am endowed with cognitive powers that I had lacked for months, but so difficult to tell when I am being stripped of cognitive powers which I have had for two decades? Why am I taken by surprise every time my condition defies the imperatives of my army of anti-immune-system biochemical weapons.

A Great Progress
One notable thing was different this time. Empirical findings confirmed objectively the dysfunction that I had probably been reluctant to admit to myself, in part out of some vestige of paranoia that it truly could somehow be merely psychological and not neurological. The knowledge that my progress can be gauged, if crudely, and that a relapse can be detected with instruments serves the dual functions of emboldening me to be more candid with myself in considering the possibility of a relapse as well as providing a way to circumvent the pitfalls of relying exclusively on my necessarily subjective assessment of my own neurological well-being.

I had hoped not to return so soon to the topic of my changing brain. Interfering with my ability to write about anything else, it had other ideas.

Yesterday I was bombarded by the sorts of sensations I described in my last post. The experience was overwhelming and somewhat incapacitating. Since these odd feelings initially appeared as I began to improve, I took the correlation for granted. While there is a basis for this idea, I should probably be less of a zealot.

Ideally, in a healthy, stable, inflammation-less brain, I wouldn’t have any of these sensations. So, while I have reason to believe they are associated with my recovery, in contrast to the very different sensations that preceded them - accompanying my decline -, I probably ought to be more cautious in assuming that everything is in order when these new sensations are coursing through my brain.

The deluge yesterday was sufficiently overwhelming as to distract me from being able to concentrate on reading, practicing, or writing. While I doubt it be the case, I ought not blind myself to the possibility that these feelings too could be masking a relapse of my symptoms. Knowledge of an indicator of progress could conceivably lure me into a dangerous level of complacency.

I’m roughly four months into my recovery. Several weeks ago I created this site so that I could write about my experiences both suffering and recovering from an autoimmune encephalopathy. As I got better, I thought, this would become a forum for other thoughts and essays, even those unrelated to brain disease. But the initial goal was to capture some artifact of my experience.

The first piece I wrote described what happened as it might appear to someone else. I described dates, circumstances, events. I enumerated specific cognitive tasks that became difficult or impossible. But what I failed to provide is the sensation. How exactly it felt to lose my mind as well as all the sensory phenomena that have accompanied recovery.

I always had difficulty with more personal writing. My talent as a writer, since childhood, has been a mechanical efficiency best suited to describing facts, details and relationships of the mathematical variety. Capturing an emotion or sensation, subjective experience, never agreed with my sensibilities. The logic in my brain insists that such a task is impossible. The lack of any real measure of success leaves me clueless as to how to approach it. Nevertheless, I find myself saddled with experiences whose nature I am compelled to describe. Ironically, it is only now, with impaired cognition, that I can attack the challenge posed by this sort of task.

Cognitive Decline

At first, all the changes were subtle. My sense of smell mostly disappeared, but I never knew for sure when it happened. If I put food up to my nose, I could smell it, but the smells of people, rooms, places, these were gone.

I remember being in a subway station during my senior year of college, noticing a sort of unreality about everything around me. At first I attributed this to my higher thought processes conducting an exercise on the limitations of human perception. I thought that this existential angst might be causing me to feel that everything was somehow low-res, flat, lacking in depth. The word ‘cartoony’ came to mind. The feeling never quite went away.

Later, in the summer of 2007, working memory became the first disabling casualty to my cognition. I remember losing the ability to practice music. Playing long-tones, I forgot what note I had just played when it came time to play the next note. Sight-reading music was never my strong suit. It was easy to attribute to this my sudden inability to read at all. But something else was afoot. Keeping track of beats in a bar became a chore, playing in any meter besides common time or three four became impossible.

I moved into my apartment in Washington Heights in the fall. My struggles to practice became more pronounced. I hardly listened to music, or even thought to. But I could still read, program. Time slipped by, I applied to Juilliard, a process that required more effort than it would have taken when I was seventeen. By the time the application was in the mail, I had ceased to be a saxophonist, and began working at the New York Observer.

Then began the first of a series of sensations that corresponded to a tangible feeling. When experiencing the world, assuming it is the same for everyone, we have the sensation of existing in a ‘headspace’. Thoughts, imagined actions, the perception of where it is that ‘I’ exists gets mapped into this headspace. I remember sitting at my friend Sebastian’s Brooklyn apartment, awakening to an eerily new sensation. Somehow, I was only in the left side of my head. I know of no other way to communicate how it felt. I had visual input from both eyes, could move all my limbs, I hadn’t had a stroke. But I felt a though I only existed on the left side. There was a big thick cloudy nebulous feeling in the right side of my headspace. I tried unsuccessfully to force my consciousness into the sensation of being in the right side. I tried futilely to picture objects in the right side. In what later became ritual, I tried to picture a rope, one end affixed to my nose, the other to the back of my head, and swing it around my head. I couldn’t picture it on the right side. As soon as I managed to place its center at the very top of my head, it became stuck, I could not force it any further.

Weeks rolled on and I failed to improve. Sometimes, the feeling, which neurologists have later told me is referred to as ‘neglect’, persisted in the right side of my head, but occasionally it migrated to the left. Additionally, a new feeling emerged, a continuous, dull pressure on the right side of my head starting at the temple and extending behind my right eye.

While doctors stumbled, trying to find answers, my consciousness was altered further. The headspace problems grew worse. I dedicated hours of every day to trying to focus on a line on a wall, I was not always able to do it. I tried to imagine a line moving along a wall, orthogonal to the floor. It required the entirety of my concentration to maintain the exercise for more than a couple seconds.

A new problem emerged, I lost language. I could still speak, and hear. Many people, principally those who had not known me before, were unable to detect that something was horribly wrong. But there was no longer in my mind that I made a horrible transformation. While, I could still speak, even articulating complex ideas, finding the words, sentences and organizing ideas into language became a monumental task. You could think of it as being extremely resourceful in a randomly half-stocked kitchen. The paprika was there, but I lacked salt. Forming sentences required mental gymnastics, replacing missing words, lines of thought with others that could be rigged together to produce the proper result.

The pressure grew, the language faded, and disturbances in visual cognition entered the picture. Things seemed to be shaking, slightly blurry. Also, I could only focus on one small part of the picture at a time. Often, it seemed as though the world was scrunched together, collapsed in on itself. All the right sensory input was there, but my mind didn’t know what to do with it. I constantly shook my head to the side violently, trying to see what was there before I lost what was in front of me. Friends and family were convinced that I had developed a twitch. But the act was voluntary. It was the only way I could respond to my diminishing cognition. By refusing to accept it.

At my worst, I was incapable of a real conversation, barely able to play a video game, disoriented even when driving locally. I felt less than alive; unsure what I was or what my life had become. The inability to think made me feel incomplete in a way I doubt even the loss of a limb could. I had become dependent, feeble, able to hold fear in check only by clinging fiercely to a stoic philosophy. The remains of the logical center of my brain, once built for math and music, worked tirelessly to produce assurances that I had nothing to gain by worrying about events outside of my control.

Recovery

The path to recovery began in May. My newest doctor, suspicious of an autoimmune basis for my encephalopathy, started me on a course of high dose steroids and immunosuppressive therapy. Within a couple weeks, improvement was drastic. I had fallen so far that I didn’t know what recovery meant. the earliest initial improvements concerned my vision. Suddenly I could see normally. Before, to make the world stand still long enough to allow me to drive, I had to place one hand firmly on my forehead, applying pressure in a way that somehow made it easier for me to focus, stabilizing the shifting visual to render the world temporarily comprehensible. After two weeks of treatment, everything slowed down, incomparably more intelligible.

The feeling of pressure that had plagued the right side of my head began to fade, replaced by a strange tingling. As I continued treatment the tingling expanded, reaching beyond isolated areas to form what felt like spider webs shooting through my brain. A disagreement between doctors led to a temporary weaning of my treatment, bringing about a complete relapse of my symptoms. Then, in July, treatment was reintroduced in full. The effect was gradual but dramatic. At times the experience of healing has been more jarring than the feeling of losing my mind ever was. I had rarely been aware that I had been losing my mind before suddenly losing the ability to do things that had always been routine. Getting better so quickly, after being compromised for so long, I felt each day to be waking into a new state of being.

Nights have been particularly strange. The tingling, weblike sensations erupt at night. Often it feels as though there is a fireworks show in my brain. The webs feel as though they coalesce, forming thicker, more liquid bodies, rolling rather than shooting. Early on these feelings were accompanied by dramatic changes. Even now, occasional lurches forward in lucidity are not uncommon. Suddenly I would feel as though in a different part of my head. An old, forgotten part of my head. An emotion would surface that I had not experienced in recent memory. Smells would come rushing back, some stirring deep childhood memories. Still, other times, either as part of some manner of flashback, or due to the waxing and waning nature of the healing process, I experience momentary disturbances in visual cognition, pockets of time in which I cannot follow relatively uncomplicated conversation.

The path continues to be significant, challenging me to function in an inconsistent environment, not knowing what the world will look or feel like next week. I know that this is an unsatisfying place to end this installment, but more shall follow when there is more to tell.

The ‘Singularity’ is in vogue. Now that computers can beat us at chess, recognize characters, and do more mathematical calculations than the entire human species armed with graphing calculators, the idea of intelligent technology has ballooned as a topic of conversation. Most articles don’t talk about machines of equal intelligence, instead showcasing their deep understanding by discussing machines that dwarf human intelligence.

I’m not saying that computers will not become conscious, or intelligent. And I’m pretty sure that if they do, the rapid pace of technological development will probably lead them to dwarf human intelligence shortly after they equal it. But few of these articles - usually written by non-computer scientists with no real knowledge of how artificial intelligence technology works - acknowledge how far away we are from having a robust idea of how ‘thinking’ works.

The brain isn’t optimized for crunching numbers. Sure, a computer can perform a quadrillion operations in a second, each of which might take a human brain one second to perform. But consider how many seconds… rephrase: Consider how many quadrillions of operations it takes a computer to perform tasks that the human brain performs easily. My Cuisinart can chop celery far faster than my hands can, but I’d hold off on labeling the Cuisinart a superior piece of machinery to the human hand.

Imagine your brain was suddenly and neatly partitioned into two separate minds, neither of which could communicate with the other. Each contained aspects of ‘you’ - that is to say, the ‘you’ of present. One half possessed your visual cognition, empathy, and human emotions. The other contained your capacity to reason, the better part of your access to past memories, and perhaps your love of chocolate. Which half would be ‘you’? If they were later reunified, which half would the recombined ‘you’ identify with, remember having been? In the process of reunification would something of the individuality of each half be destroyed?

It doesn’t really matter how one imagines such a division. The important feature of this proposition is that a chunk of your consciousness has been cleaved off from the rest. While this might appear to be little more than a silly thought experiment with little application to reality, it isn’t. If we let go of our naiveté and embrace the physicality of the mind for just a moment, it is readily obvious that consciousness is not a binary quantity like ‘on-ness’ or ‘off-ness’. It is possible to become less conscious or more conscious. People with neurological disorders like Alzheimers experience some cleaving of their consciousness, usually irreversibly, every day.

Returning to our thought experiment, we are immediately confronted with many questions concerning the nature of consciousness. For one, does it exist only in moments or does it exist continuously through time? Both possibilities present serious problems. The problem with a consciousness that exists only in moments should be obvious. Nothing happens instantaneously in the brain. Memory retrieval, thought processes, all take time and for a sufficiently short period of time can’t accomplish anything. The problems with a continuous consciousness, one which remains intact in some way from birth until death, seem equally insurmountable. Over the course of one’s life, almost all the physical matter in one’s body changes several times over. Any such consciousness would then not be a function of the material in the body but only of the information in it. Consciousness becomes an abstraction, comprised only of information and processing capabilities.

Now, say instead of splitting the brain into halves A and B, which operate simultaneously, one turns of A, leaving B running, in control of the body. Is B the same person as the whole? Our society tends to side with this interpretation. An Alzheimer’s patient is generally treated as though they are the same consciousness that always interfaced with the world through their body. They are acknowledged to be sick, but seldom are they considered to be truly different people. Unable to perceive directly anything besides one’s actions, our social interaction is almost entirely built upon a strictly behaviorist notion of who someone is - one which anchors a ‘person’ to his corporeal form.

The truth, however, is likely very hazy and unsatisfying. There is probably no discernible point at which one is officially a different person. And there is probably no way to say that the same ‘person’ at two separate points in time is actually the ’same person’. Something about this strikes me as profoundly wrong, although I am quite assured of its truth. We all like to imagine that there is an actual thing called ‘I’. That it has more concreteness than, say, the terms ‘America’ or ‘Coca-Cola Company’. But it probably doesn’t.

The implications of this interpretation on the mandate with which we can talk about consciousness, and therefore ‘human life’ are far-reaching. For one, if consciousness can never be more than a nebulous abstraction with no clear boundaries or corporeal form, nothing can ever be said concerning consciousness that isn’t similarly nebulous and devoid of concrete meaning.

Many philosophers, it seems, make the undeniably foolish move of substituting society’s pragmatic behaviorist simplification of reality for an actual notion of what consciousness is. Some people actually go so far as to consider the Turing test a true measure of having created a thinking machine. The problems with this sort of behaviorist thinking should be apparent to anyone with even minor exposure to computer science. Implementation details and performance exist on different layers of abstraction. For example, a computer program that sorts a list can be implemented in many radically different ways. Some of these ways, while wildly different from each other, exhibit identical performance. Similarly, behaviorist thinking sheds no light on what consciousness is. Even if one continues to act consistently throughout his life, it can never be assumed that this represents one consciousness acting over the entire duration.

Returning to our consciousness fragment B, what would he experience upon reunification with the formerly severed parts contained in A? Acknowledging that I - whatever ‘I means’ - am limited in answering this question by the meaninglessness of ‘consciousness’, I can comment authoritatively on what B would experience, to the extent that anyone can.

Recently, I suffered an immune-mediated freakout in which my brain was attacked, severely altering my memory, ability to reason, visual/spatial cognition, and emotional capacity. Gradually, since subduing my immune system, I have ascended back towards something that increasingly resembles my former cognitive capabilities. Several questions concerning my metamorphoses have plagued me.

As I get better, am I surrendering something of what ‘I’ am now, to the whole that I am becoming? As a thought experiment, imagine two separate people who merge to become one. Each would surrender his individuality to that combined existence. To the extent that ’survive’ is a term that means anything, would either person ’survive’ in such a fusion? Apply that logic to our split brain, A and B. Does B losing anything in the requisition of A? I’m reminded of the Borg in Star Trek, who surrender their individuality to collective mind. While I instinctively want more than anything to continue to get better, intellectually I actually find it far more difficult to make a case for getting better than I do for either not caring nor not wanting to get better.

I have wanted, for some time, to write about my experience with brain disease and altered consciousness. The question I inevitably pose to myself is ‘when?’ Since commencing high-dose steroid treatment and immune system suppression, the ascent towards lucidity has been startling rapid. The following trade-off emerges: should I wait longer to express my thoughts, exchanging their timeliness and authenticity for greater fluidity of expression?

Having decided to write now, I have perhaps lost many of my memories, keeping no artifact to preserve them. Yet, I still lack the organization of thought to express the totality of my experience in one well-structured narrative. While my thoughts are vivid, they are scattered and I can only summon them contextually. I’ll try to post here a collection of the thoughts and experiences that have emerged from my experience.