Brain

Twenty-one months ago, my brain stopped working. Something might have been amiss for some time before then, but in January, 2008, I first knew beyond any doubt that I was broken. Before the month was out, I had seen a neurologist to rule out the possibility of multiple sclerosis or a brain tumor. Nearly two years later, I am not yet sure what I am fighting, and, at times, why I am fighting.

At rare times when fear, furiousness, and frustration ebb as the dominant emotions that I associate with episodic altered consciousness, curiosity rises to fill the void. Moments of clarity bring not only a rush of sensation and cognitive potential, but also a stream of questions concerning my identity and what my precarious situation implies about it. Clearly, at this moment, ‘I’ refers to me, the one who can read a chapter of a book and remember it for longer than three seconds. Surely, it refers to the man who can taste his food, and smell it toו. And it refers to the guy who can play a modest amount of music, has respectable mathematical abilities, and craves independence.

Half a year later, the world, still, likely neither requires nor desires another self-indulgent report on the tragedies befalling my brain and the ludicrous circus that constitutes the effort to revive it. However, participating in the act of writing is vital to rediscovering the connections that have long lain dormant between my ailing neurons. If I sound whiny and pathetic, I have earned that right and make no apology for it; in fact, I preemptively retract any apology that I might make for it in the future.

A problematic question central to my dilemma is "how does one detect problems of the brain?" This might seem a trivial task, but it is not. Sure, one could easily detect drastic changes of the sort that grossly distort sensory experience, and it would not be that hard to notice severe malfunctioning of the peripheral nervous system. But if one needs to be in the business of detecting any of these problems before they become lifestyle altering, personality-changing, all-consuming paths to misery, the question becomes frighteningly more difficult to answer. If one needed to detect changes to any other observable body part, this would not be so bad. You could look at your feet, detect pain from them, compile this information and raise an alert when it seems to change markedly. Whether in the normal or deviant state of affairs, the information is detected with the same equipment, the same eyes, the same brain. The problem, which Oliver Sacks identifes correctly in his book "The Man Who Mistook His Wife for a Hat", is that, as concerns matters of the brain, both the subject of investigation and the equipment used to observe it are altered.

Where have I been?
What happened to me?
What am I?
Where am I?
How long will I be here?

About four years ago, my friend Joshua Herman introduced me to the idea that we only consider things that do not work as they should. Take computers for instance. A typical computer user with modest computing needs seldom considers the inner workings of a computer in the absence of some sort of technological bugaboo. In the presence of such a snag, however, such a user suddenly develops an unprecedented interest in memory, networking etc. On the other hand, consider gravity. We know of no reason why gravity should exist, but it operates so flawlessly and consistently that most of us waste relatively little time considering what its nature might be.

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.

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 ‘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.

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?

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.

One year ago I was 21 years old, on the verge of turning 22. I had just graduated from an Ivy League university and was about ready to delve back into the music career I had long pushed aside.

I was always an obsessive personality. Generally, I threw myself into things with a manic sense of urgency and was able to compensate with natural ability and force of will for whatever obstacles I had created for myself

In school, balancing gigs with schoolwork, friends, random side projects, girlfriends, I could always summon some extra burst of energy to recover from any hole I dug myself into. I was the sort of student that would enroll for a class without completing any of the prerequisite coursework, would go see a concert the night before a test I hadn’t studied for, but would then pull an all-niter and set the curve.

As I rounded through the my senior year en route to graduation, I lost the ability to focus in class, get better at the saxophone or stay up all night studying. It didn’t take a rocket surgeon to figure out my problem: I had a raging case of senioritis (inflamation of the senior). I had plenty of justification to be distracted. For one, I was in love. Some degree of my neglect for all things I formerly considered holy must be attributed the relationship I was engrossed in. Additionally, I was graduating. It's normal to spaz out to some degree. So I spazzed. When I really had to pull it together I still could.

The summer of 2007 came. I hopped a plane to Israel, so did my girlfriend. I intended to get away, focus on music again, get some serious practicing in. I had some extremely intense emotional experiences, but the focus never came. Weirder yet, I had some difficulty with things that had always come very easily. I couldn’t focus when practicing to save my life. As a high schooler I could have practiced while the building I was in burned to the ground. But suddenly I would get lost counting the sixteen beats I intended to hold long-tones during sound exercises. Clearly I was out of practice, or lazy, or … maybe just not meant to play music after all.

I came back from Israel in July. Some time whiled away. I’m not sure where it went. I intended to practice, attend jam sessions, same as I had my whole life. Instead I slept fourteen hours a day. I also watched some Star Trek. Eventually I stopped watching Star Trek, I couldn’t maintain focus throughout an entire episode. I got a Blackberry. I played “BrickAttack” a lot. I wasn’t proud of it. I had always been obsessive, but never addictive. Neither drugs nor video games ever had that sort of hold on me. Only once, driven by escapism resulting from the worst summer internship in the history of the world, I succumbed to the soul-leeching allures of cell phone Tetris, sacrificing entire train rides, lunch breaks and even trips to the toilet to its irresistibly captivating repetition.

Then I got a call to play a gig on a cruise ship. That’s a whole story in itself. After realizing that Norwegian Cruise Lines had little to offer me besides first-hand knowledge of life as a third-class citizen, I jumped ship in Ketchikan Alaska, caught a flight to Anchorage and then to New York, and tried once again to get my life together.

I still couldn’t practice. The problem, I decided this time, was my parent’s house. I needed to get out. There’s no way I could focus while suffocated by the expectations and demands of my well-meaning parents. So I got an apartment.

Rent was hard to make, but between a few gigs and a steady engagement tutoring Math, it was almost doable. I lived in a modest apartment and the rent was moderate (by Manhattan standards). I wanted to go to grad school. That would make me get my life in order. The process of applying would make me get it together now. Once I had gotten in to school, I would have school to solve my problems for me in the coming years.

The application deadlines approached. Juilliard, Manhattan School of Music, New England Conservatory. I read the audition requirements and began to prepare. A month went by, I didn’t really practice anything. I hadn’t been to a jam session in many months. But I went into the studio with some friends and recorded my audition tape. I sounded terrible. Out of tune. No technique. I didn’t even really care anymore either.

I sent off the tapes, and didn’t touch the saxophone again. Maybe music wasn’t the path. And why the hell should I force myself to be a musician? The only reason to suffer as a musician is because one has no choice, because some inner voice will haunt you eternally if you forsake music. But suddenly I had a choice.

So fuck jazz. A shitty way to make a living. I still had a brain. An easier life would appear the moment I asked for it. I had a degree in Mathematics and Economics. In spite of myself, I was devastatingly employable. I still had confidence in my ability to acquire skills, even as I was losing them faster that I could gain them.

I always loved computer science. I hadn’t really given it the time of day since a bold foray into the field during my junior year in college. Still, I had always gotten As, professors inquired into my future plans in the field, and peers of mine from those classes were now working at companies like Microsoft and Google. Surely I could get some job as a computer programmer somewhere. I taught myself a few popular languages for programming for the web and within a week of posting my resume, found myself employed
developing back-end features for the website of a prominent New York City newspaper.

It was January. I finished my first week at work and went out to dine with my new colleagues. Everyone was really nice. We went out to Brooklyn for sandwiches the Friday after my first week was completed. Something was wrong. Really wrong. It was my mind. I couldn’t follow the conversation I was having. After 22 years of packing hidden meaning and spoonfuls of sarcasm into every exchange I had, I was unable keep up with a simple conversation with my project manager about the sort of run of the mill stuff you share over beers and a turkey club.

Maybe a few beers would make it go away. I had a few beers. I felt a little better.

A few weeks went by. I went with my mother to Carnegie Hall. She told me of plans she had on Tuesday and Thursday. I didn’t know what Tuesday and Thursday meant. I could have told you that they were days of the week. But I couldn’t visualize where Tuesday came in proximity to Thursday. I could recite a definition, but it lacked meaning. All the imagery associated with language vanished. I could remember sentences, but I couldn’t paint the picture in my head, even with all the pieces laid out before me.

I still had a little lucidity left. If I dedicated that which remained to finding out what was wrong with me, maybe I’d still make it through this intact. Reading became arduous, work near impossible, but I slogged through pages upon pages of internet medical content, hoping to find some clue to explain the decline of my cognition.

I don’t remember enough from the time between late February and July. My memory of the time is two-dimensional, a collection of images, dates, facts. Sometime in February a strong sensation of pressure behind my right eye became a regular part of my life. In March I went on a work trip to Boston. While on the trip I hit rock bottom. I was incapable of following a basketball game on the television. The pressure expanded, occupying much of the right side of my head and occasionally punching through to my forehead, about an inch above my nose. When I got back to New York, my life devolved into a series of Doctor’s visits punctuated by feeble attempts to keep working despite my veiled affliction.

My girlfriend didn’t understand why I stopped talking to her. My friends didn’t know why I never picked up my phone.

With the few wits I had left I planned a catch-all strategy to salvage what was left of my life. I developed a diet/treatment plan to cure me of any disease, real or fictitious, that could be responsible. I had antibodies to gluten: wheat barley and rye were out. Dairy supposedly causes some mild brain fog in some people: away with it. According to a slew of obviously disreputable web sites, illnesses like mine could be caused by strange fungi that could be killed by depriving the body of sugar. I was desperate. Away with sugar. If real medicine had no answers, perhaps voodoo did.

April came and I could no longer drive. I tried, but I probably shouldn’t have. I found myself at the Vitamin Shoppe one day unable to figure out how to ask the employee behind the counter where the vitamins I wanted were kept. Following the plot of an episode of Law and Order was beyond my capacity.

Finally, in May, five months after losing any semblance of a normal life, one doctor found an answer. Treatment was drastic and started right away. Where the world had seemed in fast-forward, lurching ahead of my ability to comprehend, it began to slow down.

More to come.