Hashimoto's Encephalopathy

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.

Stripped of ability, strength, I find myself suddenly somewhat renewed and left to embark upon the long road not to the point from which I fell but to something resembling the point towards which I was striving before life got in the way, albeit from a different angle. While the malady that caused my deviation from the path is rare, fortunately the general story line common; our society is rife with tales of such role models, prototypes for my quest to heal stronger. I would like to identify three of them.

Very few things in this world can claim not to be represented on the internet. Probably the simplest, and crudest, gauge of web presence would be the availability of a domain. Type any permutation of the words New, York, Real, Estate, Apartments, and Buildings as a web address. It will assuredly be taken. But the level of occupancy in domains extends far beyond the economically sensible. Try “horse farts,” “big turkeys”, “apricot recipes” or “toilet plungers”. Truncate the spaces, append a “.com” and you will find a domain owned, if not occupied.

There exist many conditions, mine among them, for which science presently lacks an understanding of aetiology. At some level this is true for many diseases. Doctors can identify cancerous cells as the cause of a patient's symptoms but usually lack a complete understanding of how cancer is caused. Other diseases, like strep throat, on the other hand, are extremely well understood. We are aware of the infectious agent, we understand its method of transmission, and we have reliable tests to determine its presence in a patient. Conveniently, we also have proven treatments. But here, I address specifically those diseases about which we have only the vaguest understanding of the underlying mechanism.

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.

Although I desired to keep posts on this section of the site from reading like journal entries, perhaps that is an unreasonable goal when discussing the matter of my recovery and evolving mental state. Nearly a month has elapsed since I last wrote here, perhaps the break was necessary. The month has been turbulent, characterized by leaps forward and steps backwards.

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.

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 difficult 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.