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.

Recently, on a tear towards recovery, I began a grueling practice schedule. What started as a few things that I committed to practice every day grew into a daily allocation of the hours between 11AM and 6PM to a rigorous ritual, pushing the limits of my fragile brain. I even expanded this methodology into other aspects of my life, dealing more methodically with recovering my skills in math and computer science, committing to daily exercise, putting social encounters on the schedule, and altogether blocking distractions like television from my life. The motivation for this sudden and drastic lifestyle change was entirely born of my desire to return forcefully to the things that I love and used to do well. I wanted to make up for lost time, and I had a new appreciation for the scarce, fragile time we have on this planet. To these ends, the ritual has been a life-changing experience. But it has also had an unanticipated but wondrous side-effect.

In the past, relapses were never easy to detect. At first I would begin to susptect that something was amiss. Then I might have a good day, or merely a better one, and doubt myself. A twitch might seem to reemerge, but then it would subside. Gradually as my abilities shifted, I would make correlated shifts to decrease the afflicted activities in my lifestyle. After a couple weeks of this insidious creep, I would no longer be playing music or reading, and then suddenly a moment of disorientation would hit me so profoundly that I could no longer compensate by living differently. I knew then that something was horribly awry. By then, weeks into a relapse, I faced weeks before I could substantially recover.

This week, however the cycle was broken. The schedule to which I have comitted pushed me to the limits of my current abilities, and as I improve, the schedule becomes more rigorous, more complex. And from day to day, many aspects of the schedule are religiously consistent. Last week I began to notice a twitch remerging. It waxed and waned over the better part of a week. By yesteday, however it had clearly waxed more than waned. I attempted the ritual, but was rebuked, unable to concentrate for more than a couple hours and then only with great labor. I found myself struggling, albeit not as mightily as when I have spotted a relapse in the past, to concentrate, and quickly pounced, responding appropriately.

Probably more accurately then any other test that could be devised, my practice schedule provided a reasonably objective guage of my cognitive state, sparing me the misery that normally accompanies a lengthy plunge into the abyss. My intuition is that any unanticipated effects of living well should be expected to be positive in the same way that one would not be surprised to discover yet another disease strongly correlated with smoking.

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.

Lance Armstrong
This dude is ridiculous. I would try to express this idea more eloquently, but that would also be ridiculous. In 1996, suffering testicular cancer which spread to his brain, he underwent surgery on his necrotic brain tumors and to remove his diseased testicle. Two years later, he began his comeback, and in 1999 he won the Tour de France for the first of seven consecutive titles. Again, ridiculous. At the same time, I can understand how great an advantage he must have had over similarly talented athletes who had not experienced anything hardship of that nature. There is no way that after suffering through chemotherapy, brain surgery and an orchiectomy, Lance Armstrong was not subject to any of the same obstacles that normally hold people back. It is inconceivable to me that he could fail to train adequately on account of playing too many video games, or any other sloth. I do not wear his bracelet or anything like that, but I get it, this is the guy. It reminds me of John Coltrane. There is no way that John Coltrane was even a quarter as naturally gifted as Sonny Rollins. But that is a huge part of his greater impression on the culture as personality, a character in history. People can imagine achieving things via an insatiable work ethic. Little is gained from praying to wake up with supreme natural talent. Lance Armstrong allows people to say "if that dude with one ball holes in his skull can win the tour de France..." It's charming.

Gandalf the Grey
While Lance Armstrong might have overcome cancer, Gandalf fought a Balrog. Lots of dudes in Middle Earth will not even allow you to say that out loud. Gandalf fell off a bridge deep under the mines of Moria, ensnared by the tail of the giant demon thing, and had to fight it ... or something. And yet he came back astonishingly stronger. They even had do change him to a different color. I'm going to ignore the really creepy racial undertones of Tolkien here ... back to the point. In Tolkien's weird world, being white is to wizardry what being black is to karate. And Gandalf doesn't merely become “The White”, he becomes “The Whitest”, casting off Sauruman with aplomb. Again, the color thing is considerably weird. But the example stands as a great real world validation that one can recover from a great fall and achieve greatness.

Pat Martino
This guy might not be Gandalf, or Lance Armstrong, but he is a musician who recovered the ability to play after experiencing a disease of the brain. So what he lacks in RPM and wizardry, he makes back, as concerns this list, in relevance. He also happens to be real, which I have decided not to hold against him. After suffering a nearly fatal brain aneurysm in 1980, at age 36, he underwent surgery, emerging with no memory of the guitar. After a long recovery, Martino recorded again in 1987 and has enjoyed considerable success as a touring musician.

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.

Arthritis.com, Arthritis.org, Arthritisinsight.com, and Allaboutarthritis.com constitute a small sampling of the many Arthritis-related domains. I was surprised recently, however, to find that my condition is sufficiently lonely as to lack its own web site.

There is one paragraph on “Hashimoto's Encephalopathy” at Wikipedia. There are many publications accessible through a simple google search. But not one site on the internet appears to exist dedicated entirely to the condition. Not even a squatter has found the time to purchase any of the domains “autoimmuneencephalopathy.org”, “autoimmuneencephalopathy.com”, “hashimotosencephalopathy.org”, or “hashimotosencephalopathy.com”. As I write this I decided to type into the address bar the name of a random color followed by a random animal. I chose “pinkleopard.com”. It's taken, a cyber-storefront for “two modern moms” who make “quick and comfortable” tops to be worn “after carpool, after dinner, or after sex”.

For nearly any straightforward name you can think of, some idiot has purchased the domain. Yet not one person on the planet has been compelled to spend seven dollars to secure the rights to even one of the names of the particular disease with which I happen to be afflicted This, more than the limited case history, or the presence of only one dedicated clinic in the world epitomizes the unique sort of loneliness that sufferers of autoimmune encephalopathy (if I may speak for all... 100? 1000? 10,000? 600,000?) experience.

In all fairness, the internet is not entirely devoid of content related to this disease. But the top two hits are an about.com article and a page on the site thyroid-info.com (a 1980s-looking hodgepodge of a site by patient-advocate Mary Shomon using depracated html) in which Beverly Seminara, a patient advocate and sufferer of the disease with the noblest intentions shares her experience and compiles links to case histories. Even this site, primarily devoted to my music, has made it on to the second page of google search results for "autoimmune encephalopathy".

What is totally lacking on the internet is a site that does the following: feature an organized, sortable aggregation of case histories, studies and publications; provide a forum or other online community utility dedicated exclusively to the disease; maintain a degree of legitimacy by abstaining from offering unqualified medical advice.

So, I've decided to build it myself. The term Hashimoto's Encephalopathy is a misnomer and should not be used, but to concentrate attention on the new site I've taken the domains hashimotosencephalopathy.org and hashimotosencephalopathy.com off the table and redirected them at the future home for all things considered with autoimmune encephalopathy: www.autoimmuneencephalopathy.org.

I believe that this is an important task, in an age when most information is gotten through the internet. Hopefully the site will be a resource for patients and doctors, an outlet for specialists interested in, publishing on, or researching the disease, a community for patients to find support and share experiences and more. Maybe down the road it could serve a vital purpose to our tiny community.

Please have a poke around, drop a note, make a suggestion.

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.

Consider again strep throat. In a small fraction of patients, untreated or under-treated cases can lead to rheumatic fever. The same underlying disease can present differently in different patients. As concerns many autoimmune diseases, however, due to the lack of an understanding of aetiology, the unity of many conditions would be impossible to grasp in the context of differing presentations.

In my case, I have experienced an autoimmune disease of the brain, specifically one responsive to steroids. My diagnosis is based not on any blood test or biopsy, but instead on a combination of strong suspicion, responsiveness to treatment and exclusion of other diseases like lyme that could cause similar symptoms. The symptoms are verifiable but the aetiology is not understood.

The responsiveness of a disease to immune suppression and steroids does strongly indicate that its cause is an inflammatory process. But 'Steroid-Responsive Encephalopathy associated with Autoimmune Thyroiditis' is not the only known autoimmune brain disease. Multiple sclerosis is believed to have an autoimmune aetiology and in the short run attacks can respond to treatment with corticosteroids. Similarly, many other diseases exist, such as neurosarcoidosis, which are both steroid-responsive, of autoimmune aetiology and effect the brain. Another is vasculitis of the central nervous system.

These diseases each have a different clinical presentation and a different set of correlations with antibodies, but the diagnosis of one and not the other is not made with the same specificity as a diagnosis of cancer or bacterial infection. Here, diagnoses are made by excluding diseases that are dectable with more reliable diagnostic processes, and then by classifying according to the clinical presentation. Multiple sclerosis generally shows evidence of demyelination on imaging. Primary angiitis of the central nervous system has a certain characteristic presentation. A neurologist might say, “you don't have vasculitis of the central nervous sytem; if you did, we wouldn't be having this conversation.” You probably could not imagine a doctor similarly excluding a diagnosis of HIV on the basis that the severity of a patient's symptoms didn't fit a particular profile. Here, however, that sort of diagnostic criteria is not possible.

Given the absence of a more robust system for grouping and treating patients across this spectrum of disorders, this is most likely the best that can be done. Fortunately, the treatment profiles for most of these conditions generally follow the same pattern of corticosteroids alongside immunosuppression. Still there is something immensely unsatisfying about not having any tangible understanding (if a microbe or antibody can be considered tangible) of what precisely is causing my malady. More disturbing is that in the absence of a critical mass of patients, it is hard to imagine a realization of the funding and controlled studies that would be required to procure such information, even if it became technically feasible.

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.

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.

After several months in which I somewhat despondently attempted to regain some form of technique musically, I finally reached a point physically where I am able to play with sufficient stamina, both physically and mentally that I can work seriously towards musical goals. Still my attention span, mental quickness and memory are shadows of former years, but progressing steadily.

An interesting cycle has emerged. On the way down (as my disease progressed), I would lose ability, then work harder to accomplish the same tasks. I continued performing the same sorts of tasks but with far greater difficulty. Now, on the way up, as my mental faculties reemerge, I re-calibrate my expectations, performing the same tasks but shifting my expectations regarding the degree of ease with which these tasks can be performed. The fascinating feature of this pattern, to me, is that overall the level I demand of myself exists mostly independently of my ability at any moment.

This idea, that changing mental abilities and the level of activities – what books I read, which music I listen to, the food I attempt to cook – are largely independent raises an important question. What determines them if not who I actually am and of what I am actually capable at the moment?

I believe this sense of what I can and should do flows not from my actual abilities at any given moment but instead from a deeply ingrained sense of self. Upon further investigation, this idea makes fantastic amounts of sense. Perhaps my personal fluctuations in mental ability are extremely rare in any person of my age, and most of those who do experience a rapid deterioration of mental capacity probably never experience any recovery that would allow them to talk (or think) about it. But, on a much smaller scale, every individual has substantial shifts in capacity from day to day. It then must be necessary for pragmatic reasons for each person to have a sense self that exists independently of the actual 'self of the moment'. How else could someone decide at any moment what long-term responsibilities to take on? People require a sense of self that is considerably more stable than the self itself,

When I reached my deepest trough of cognitive decline and still forced myself to read, I didn't revert to the books on which I learned to read as a young boy, even though they would probably have been better suited for my level of comprehension at the time. Instead, I attempted to read Dostoevsky's The Brothers Karamazov, continuing with the last book I had been reading before my sickness began to rage in January. Only much later, weeks into my recovery and after considerable conscious deliberation did I recognize that I had to read books more suitable to who I was at the moment and not who 'I really was'.

What then is the nature of this more permanent self-image? How quickly does it evolve? Can it be altered? Does it settle in at a certain age, condemning all of us to spend the rest of our lives as whatever we have determined ourselves to be?

As I reclaim my brain, gradually bringing old activities back from the brink and into the possible, even easy, I aspire to re-calibrate my sense of what I can and ought to be doing to more fully use all of my mental capabilities than I did before embarking on this flirtation with dementia.

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.

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.