Essays

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.

A couple months ago, before my last relapse and subsequent progress towards recovery, I wrote an essay published here entitled Art in the Cloud. While it contained the germs of several important ideas in whose merit I strongly believe, it also suffered several major shortcomings. Some people complained of the essay's vagueness, unsure of what tangible things I was advocating. Others outright dismissed the entire essay, suggesting that it was merely a collection of pompous declarations. A few people criticized the essay, suggesting that people do not want a more 'robust' connection to artists, they just want the music. Additionally, many asked of me, why should artists be sharing more information? Simply because they can?

Some of these points reflect a difference of opinion about what art is, can be, or should be and how it ought to be shared. Others more simply reflected my inability to write coherently at the time, my failure to clearly articulate my arguments. Hopefully now, after some time to reflect, and with greater brain capacity I will be better up to the task.

First, I would like to address my subject matter. I had intended to write solely on art, concentrating specifically on art music, as differentiated from entertainment. It was not, nor is it now within scope of the essay delve too deeply into the nature of this distinction, but it is important to establish, even if crudely, the subject matter at hand. I am fairly certain that there is no clear line that can be drawn, however it might be possible to articulate some of the qualities associated with art but not necessarily with entertainment.

My essay is concerned with art whose understanding goes deeper than simply the sensory experience of looking at it or listening to it. One can listen to a Britney Spears song, but there is not much to say about it beyond 'what it sounds like'. To the extent that there are deeper things to be said, they concern sociological phenomenon like the commodification of art as personal identity more than they concern engagement with an artistic tradition. Stravinsky's Firebird, on the other hand presents a creature whose understanding is greatly aided by knowledge of the harmonic structure, historical context, even simply by contemplating the elements of the work. I know that there is a continuum and do not cling to these distinctions dogmatically. However, it is works whose appreciation is skewed towards involving greater contemplation, knowledge, intelligence that I am addressing here.

What's the Point?

When I wrote Art in the Cloud, I had several nebulous points in mind, but failed to make any clear. Here I believe I can do better. Technology generally, but specifically the internet has reshaped our society. We are only first experiencing the consequential changes to the way information is shared, commerce is conducted, and intellectual property, if at all, is protected. I argue that these changes demand that artists change the nature of their interaction with the mass audience along several dimensions, and for several reasons. One is that the CD is nearly obsolete, and we no longer need to marry ourselves to its product cycle. Another cause for change, I believe, is that art ought to reflect the times in which it is created. As concerns these changes and the sharing of music, I believe most artists are embracing the crudest aspects of the new media, turning to Myspace to turn the sharing of music into an exercise in exhibitionist social networking, rather than taking cues from the open source movement and using the internet to share something more substantive than they ever could have without it.

First, concerning the compact disc. Just as the LP lifted constraints, allowing musicians to record longer songs, the internet too potentially changes the game, altering the dynamic between recording artist and audience. Still, few musicians have bothered to claim any degree of freedom from the product cycle of the CD. Many artists release individual tracks ahead of records on their Myspace pages. And many others post a track or two from live performances. But very few people have embraced the internet as the avenue of distribution, making it the primary focus, ahead of the album. To a large extent this is understandable; the product cycle of the CD provides a degree of structure that is useful and difficult to replace artificially. People regularly cling to vestiges of outmoded methods when they prove useful in the creative process. Writers regularly write distinct drafts even though computers allow for a continuous revision process. Still, I believe musicians collectively have yet to realize the potential to take ownership of the method of distribution. There are no longer any size, time, or logistical constraints in the distribution of music. More people can distribute more music on their own terms. Artists will have to turn their attention towards the creation of art to be distributed through the internet and not be so narrowly focused on the creating of albums and marketing them through the internet.

But in the scheme of things, this past point is minor when compared to the larger issue at hand. I was asked repeatedly, why must artists share more information, expose their process, just because the internet allows them to? I cannot honestly say that all artists must or will, but I feel confident in suggesting that many will, and that whether or not artists choose to participate in this new way of sharing information, it will necessarily be something that they will have to acknowledge. Art has always been reflective of its cultural surroundings. And when major technological shifts have altered cultures, they have always had multifaceted effects on artistic traditions, directly by altering the nature of the interaction of artist and audience, and indirectly by so radically altering the world that art must reflect these changes creatively. As concerns the internet, both these things are at play.

Above I briefly attempted to discuss one way in which the interaction between artist and audience has been altered. But there are others. By removing all logistical obstacles to the sharing of information, the internet not only makes it so that artists can share music in whatever quantities and at whatever times they want, but also allows them to share whatever text, video, and other supplementary information they want. As concerns an artist like John Coltrane, whose goal always seemed to be more to document a process than to produce a glowing nugget of perfection, the internet provides the ability to share all stages of the artistic process, all steps in thought and performance along a path. But still I haven't fully accounted for why it is that artists ought to expose the process to the audience, to their peers.

One of the internet's most notable effects across society has been the demystification of nearly everything. Our times are characterized by an unprecedented degree of transparency. Sure, an artist today can decide to ignore this, but even then, the decision in this climate to withhold transparency is a conscious rejection of what has become the norm, just as a college student must consciously decide not to join the Facebook. I do not suggest that artists should strive less for perfection, concentrating instead on the documentation of a process with no regard for where it leads. Rather, I contend that in a society characterized by open source software development and grand experiments in groupthink like Wikipedia, where embarrassing video exists of every politician in office and every teenager has immortalized some statement on a Livejournal that in years past might have ended a career, art no longer needs to maintain the illusion of perfection, of seemingly emerging from nowhere fully formed. I argue that the proper way to share art in times characterized by borderline exhibitionist transparency is to do it transparently. I have written a number of truly terrible essays on this web site, and will soon begin posting some truly terrible music as I attempt to swiftly rise towards a lofty goal while originating from a humble beginning. In the past, musicians were very careful about how they debuted, what information they shared, what the public was allowed to see. Today this runs contrary to the nature of our society.

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.

Recently, able to think and play again in a way that has eluded me for years, I have been devoting a lot of thought to the bigger picture concerning my art. What constitutes a justification of art? Is it emotional expression? Can a justification of art be generated by an extrapolation from some simple axioms? If there is a justification of art, does it demand that art be original? I should preface this discussion with the disclaimer that this discussion concerns only an investigation of my personal notion of what constitutes a justification for art and not a judgment on whether or not any work that doesn't meet the criteria that I will set forth has redeeming value.

While thinking about these matters I spent some time trying to apply these ideas to some of the music that to me by identity achieves the ends of art. I also tried to apply these ideas to music that I feel fails convincingly as art.

First, the failures. At risk of compromising the intellectual integrity of this post I'll abstain from a direct discussion of what music it is that fails and proceed to a discussion of my conclusions. It is not sufficient to emote. Emotion, immediacy, these things are important and perhaps essential to the creation of meaningful art, but they are not sufficient. Everyone emotes. And a good deal of them emote honestly and passionately. But for me to identify a work as art, I demand more than simply the pouring of one's heart into one's craft. Something in the conveyance of the message must demand further thought than that required to initially experience the work. This is not to say that great art has to flow from a formal education; it certainly doesn't. But it cannot simply be literal. What you see is what you get can accomplish expressive but not artistic ends.

So, what explanation of art can account for this missing piece which is lacking in works which accomplish only expression but nothing more? Can there be some abstract answer for what quality art must possess? Many people have tried to put forward some such explanation. Nietzsche famously discussed the artist's interaction with tradition. Only after conquering some such tradition can an artist then assert their creation. But, even then, we must consider what makes any such tradition great. Nietzsche refers to tradition in Zarathustra, characterized as a dragon, on whose scales shine "Values, thousands of years old". He further asserts "to create new values--that even the lion [he characterizes the would-be creator as a lion] cannot do; but the creation of freedom for oneself for new creation--that is within the power of the lion. The creation of freedom for oneself and a sacred 'No' even to duty ... To assume the right to new values--that is the most terrifying assumption for a reverent spirit that would bear much."

Great art, in my estimation is that which creates new values. It is the act of creation as described by Nietzsche. Robert Johnson's music did not flow from an academic understanding of musical theory, but it also did not merely consist of emoting as many had already emoted. His music created new values. The act of creation, of an idea, and not simply an artifact - an idea manifest in an artifact or in many, this is the act of creating art.

As for justification, I argue that the creation of new values is in and of itself the justification of art. At risk of being dismissive, and I am sure that worthy counterarguments abound, I am inclined to think that any attempt to derive art's significance or raison d'etre from basic axioms will either fail or be useless except as an academic exercise. These discussions, invariably, lead to the tangle of what constitutes significance, what are our ends? Sidestepping these potholes, I think we can evaluate art more successfully by considering it only in regard to itself, and in the context of the tradition that it follows, extends, or rejects. Art is significant, justified, and vindicated as art, as a contribution to the dialogue, if only it can be shown to be significant within the art, that it asserts something that must be acknowledged, whether or not it fails aesthetically. The only way, I argue, that this can be done is through the act of a creation of something so thoughtfully and completely it cannot be ignored.

I should also here clarify that in my interpretation of Nietzsche's rejection of the tradition, this 'rejection' is not a rejection of disdain, nor one motivated by an inability to achieve the demands of the tradition. Nietzsche himself asserts "[the lion] once loved 'thou shalt'", pointing to the embrace of the tradition that must precede its rejection. Also we must carefully consider a separation of the evaluation of art as art from any other context in which it might be considered. Jazz that swings but is devoid of conceptual weight could might not be art, yet still represent an achievement of craft. On the other hand music lacking he same degree of craft might still represent a serious achievement in art.

As an example, much controversy surrounds the saxophonist Mark Turner and his significance in jazz. Many of his critics consider him to be incapable of playing with the feeling of the blues while many of his followers assert that he is the most recent great saxophonist in the lineage. I make neither assertion here, but point out that his vision, regardless of whether or not it accords with a sense of what must be 'correct' in jazz, is so specific, explored, and developed that even by his critics, it can't be ignored. His decision to express himself in the absence of dynamic contrast, without inflection, confining himself to a purity of tone and a specific sort of technique is unique, an act of creation, if only a minor one. Here I might argue that even if one considers the music to fail expressively, which I don't, it still survives as a conception that must be considered.

More apparent artists that I considered as exemplars of artists whose work is clearly justified as a creation of values are Bach, Charlie Parker, Picasso, and Dostoevsky. Bach, clearly, in his creation of much of what we call counterpoint, created a world so maddeningly and meticulously ordered that his music serves as the basis for much of what occurs to us as logical or intuitive in music. This is not to say that there is no biological basis for our perceptions of these sounds in this way. But Bach's chosen orderings are not unique. Many cultures have arrived at markedly different melodic conceptions. Charlie Parker, in his innovation of bebop clearly forces forth an idea that all jazz musicians, even those who came before him, had no choice but to acknowledge. The work of Picasso similarly followed the mastery of a tradition with its rejection, creating a new set of rules by which it operated. Dostoevsky, too shattered conceptions of the novel that preceded his work, creating modern prose, according to James Joyce.

The question then must still be raised, why is it sufficient to create new values? It is difficult to answer this question without putting forth an identity response, simply defining the creation of values as constituting justified art. One possibility would be to require that these values are not simply assertions by their creator but values that must be acknowledged, if not employed by others. Still there is something unsatisfying about this explanation. In this case there could be no art in a world consisting of only one being. Perhaps there can be no real objective justification of art in a comparative sense. But I do believe that through the act of creation, the putting forth of an idea so cogent and ordered that within its own universe its rules seem to make sense, to possess a quality of 'rightness' is as close as we can come to justifying art.

A lingering question is whether or not art, true art, not merely the execution of a craft, must be original. I argue that it must. I don't believe that originality is essential to the creation of music, but to art I believe it is. Playing bebop well could constitute great music, enjoyable music, entertaining music, but I don't believe that it can now constitute great art any more than could the production of proficient cubist paintings.

As a jazz musician, I think that the next step must involve, as in any art - and as it has at every major step in jazz's history, a rejection of tradition. Yet something seems lacking in much of today's jazz music that parts from tradition. The problem, I believe is not with the rejection of tradition but with the failure to create new values. A rejection of tradition is abundant, but the creations themselves sound like rejections, not creations. Producing endless records that have no bigger idea than "this sounds cool, we'll put it on the record" does not create new values. John Coltrane had a broader conception in mind than "maybe it would be cool if". He single-handedly developed an aesthetic, following ideas over the course of years, creating an elaborate system of thought, a new theoretical basis for improvisation. Sadly, this is lost on most of those who try to replicate his accomplishments not by pursuing an analogous quest but instead by repeating moments from his, chasing not his goal but merely the aesthetic of having a goal. This attempt to create a 'searching' sound without actually searching for anything - besides an audience - perverts the accomplishments of Coltrane, and certainly fails to capture any of his achievement.

Perhaps most current rejections fail only because most attempts to create lasting art must inevitably fail. But I think the past thirty years have seen far less progress than the preceding thirty. I think this can be attributed to two things. Firstly, a true rejection of tradition requires a thorough understanding of the tradition. Charlie Parker's rejection of swing was not born of an inability to play swing, nor was it born of a distaste for it. Instead it reflected a bold decision to depart from a set of cherished norms and create new ones. The growth of the tradition at each step might yield less people in each generation able to scale to the top and then overthrow it. Additionally business models catered to a decreasing attention span have led many to try to market themselves by a sound and not by an idea or conception.

Having presented this notion of art as creation and a critique of the abundance of failure, it would seem to fall upon me to present an alternative myself, or at least to offer a direction. As for my own endeavors, I am rapidly recovering in recent weeks, repossessing skills that have long been in atrophy, but I am still flirting with Nietzsche's proverbial dragon, not near striking distance of slaying it. As for direction, I offer only that emphasis needs to be reassigned to the act of creation and to understanding. So many jazz musicians today possess incredible skills, but too many use these skills as an athlete does, abilities are cultivated thoughtfully, but broader considerations of the direction of music, of the nature of music, and of its structure are ignored. There are obviously notable counterexamples. Jason Moran is one that comes to mind quickly. Keith Jarrett, while not entirely of the last thirty years has presented many musical ideas. I think that we ought to regard our music as J.S. Bach, Charlie Parker, and John Coltrane among others did theirs. Part of this, I believe, involves reasserting the role of intellect in jazz. For all the complaints of how jazz has become overly 'brainy', very few musicians today use their brains even half as much as did Charlie Parker or Thelonious Monk. I think the big problem is that the music has become too pseudo-intellectual. The appearance of intelligence, or the difficulty of performance is used unsuccessfully as a proxy for the intelligence of the concept. If musicians step back in scope, thinking not about how they sound on a particular chord change, but instead about what ideas they use to frame their entire musical conception, I believe new values remain to be created.

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.

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

In my experience, most people are anxious, primarily, about what will come after this life.
My existential angst concerns my existence, not its loss.

Descartes in the absence of religion?
The evil demon has already presented itself.

Religion and Rationality.

While clearly religion can be shown to oppose rationality, no proof can show a strict adherence to only rational beliefs to be in anyone's best interest. The two greatest logical minds that our civilization ever produced found ways to be miserable and off themselves.

Perhaps any answers to my questions, even if baseless, would be better than none. However, I know not how one might go about fooling oneself.

Excerpted from Newsweek interview of Woody Allen:

So why go on? "I can't really come up with a good argument to choose life over death," he says. "Except that I'm too scared." Making films offers no reward beyond distracting him from his plight. He claims the payoff is in the process—"I need to be focused on something so I don't see the big picture"

Music as distraction:

Is the value of great art simply its ability to lure us away from morbid thoughts? To temporarily put off consideration of the 'meaningless flicker' of life?

I wish that I could conceive of life as a game. At various points I have. Becoming the best musician, earning the most money, these sorts of things offered a metric by which success could be measured. Thus flattened, life was easier to take, comprehensible.

Is honesty to be found only in uncertainty?

Since Thursday I have had a headache that afflicts pain as a function of the angle formed between my body and the floor. Lying down, I can function on a high level. Upright, my temples throb and the smell of food induces nausea. Fortunately, this ought to be a short phase in my life. Still, in the absence of relief, I have given some thought to how I might cope were my condition to be permanent.

Probably the most difficult function to reproduce would be transportation. In the absence of some sort of periscope, it would be impossible to drive a car while on my back. But it might be possible to drive while lying flat on my stomach. This would require the back seat behind the driver to be removed as well as the back of the driver's seat. Some stretcher-like apparatus would have to be constructed extending into the back seat such that I could lie comfortably belly-down and face the windshield without being so close as to jeopardize my life. To accommodate this unusual driving posture, the pedals would need to be placed against the back wall of the car so that my feet could operate them.

Naturally, this strategy would require an unprecedented set of safety considerations. I am not sure where the airbag would go, but after a considerable thought I doubt one would be of any real usefulness. If hit from behind or in front, my inertia would carry me forward, head-first in a straight line towards the front of the car. Any airbag in my path would probably snap my neck before the steering wheel or windshield could. I think safety would most likely be accomplished by super-strong shoulder straps, binding me to the apparatus on which I was perched.

Another consideration is how best to eat while in this precarious state. So far, I have sat up for brief moments, enduring the headache in exchange for the aid of gravity in digestion. Surely, if this condition were to be permanent, I could do better. One possibility might be to magnetize all of my food. Then, by placing a sufficiently strong magnet of opposite polarity near my feet I could reproduce the effects of gravity but only as concerns my digestion.

A number of other considerations would require similar attention if this condition were really to be permanent. Some activities, like reading, merely present inconveniences. Others, like practicing and performing on the saxophone might require the sorts of revolutions in engineering that keep Thomas Friedman awake at night. Fortunately, I do not expect to be in this situation long enough to solve any problem more complex than how to eat scrambled eggs and post a poorly conceived reflection on this topic.

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.

This idea isn't a hard and fast rule. My own mother expressed to me how intriguing she finds even technology that always works as it ought. That opens up just one class of exceptions to this idea. Things that consistently work as they should but came into being partly through someone's life. Still, its an idea that I find myself returning to periodically over the years.

In light of my recent experiences, the idea is prominent in my thoughts. The world that our conscious mind sees, interacts with, is the perceived world, not the 'real world'. For all we know, the world is simply a sufficiently competent set of computer generated stimuli. These thoughts are nothing new - anyone who has seen The Matrix has encountered them - but they inform the point I am trying to make. Having my experience altered by these recent cognitive malfunctions, in a sense, from my perspective, it is as if the entire world became broken.

For most of my life, I took for granted that the world worked in a sort of equilibrium. Bureaucracies manage, if somewhat incompetently, to regulate most human activity. The very existence of an economy that can achieve employment well over ninety percent is an astonishing fact that seemed unremarkable when, from my perspective, it had always been. When all of reality went haywire for me, however, I gained a new appreciation for just how precarious our situation on this planet is.

We are ants, crawling around a moldy piece of cheese that is orbiting a fireball in the middle of nowhere at a speed of 3.0x10^4m/s (relative to the fireball). There is nothing more than physics keeping our minds from decaying into thoughtless balls of mulch. Our memories, thoughts, identities, hold on by a thread, and even then, only temporarily. Still, as I recover, I am consistently amazed at how well things that I convinced myself while sick are impossible really do exist. When I became sufficiently weak that I could not take care of myself, I became convinced that no one would. I was unable to conceive of being able to take care of anyone, so it seemed impossible that anyone should be able to take care of me. Miraculously, however, that was not the case. Often, now, I find myself working to reestablish the sorts of faith in the world's workings that will allow me to get on with life. Perhaps I am more religious, in an abstract sense, than I care to admit.

Bart:

"You make some interesting observations and points, some I agree with, some I don't. I don't want to know what Trane studied 10 hours a day. I don't think the creative process must be laid bare for all to see. I think he who wants to know should work for the information, like students centuries ago going to monasteries to seek wisdom. Another thing is that I don't want to know everything about how things are made. It's a bit like the extras on a dvd. Knowing to much about how a movie is made can distract you (me) from what that movie is about. The problem is you don't know what information is helpful, and what info isn't."

Doug Wamble:

"Hard to get past the first paragraph, really. Your entire premise is kind of false. I think artists have been at the forefront of utilizing the internet. Where is the evidence for this "stiff resistance?""

"Besides all that, you're making these grand proclamations that aren't really based in anything specific. What is art music? What is boldness of concept? What is confrontational honesty? Do you just know it when you see it?"

Response:

First of all. Thanks for taking the time to attack my half-formed ideas. As I'm still not quite all together, I hope you'll forgive my approach of being somewhat deliberately provocative even when my arguments are not well-formed enough to support the conclusions.

Bart, concerning your idea that the extra information detracts from the whole, that's a very good argument and I have no great answer for it. In fact, I don't think that I want all art to become open in the way I'm suggesting. I think what I'm putting forth is more of a crude first stab at one particular view that I think will become more prominent as a consequence of the way technology is affecting the experience both of art and of life in general.

Secondly, Doug. I don't think that artists have been at the forefront of using the internet. I think if anyone, software developers, computer scientists are way ahead, granted they have an unfair advantage. The things happening in the open source movement are pretty remarkable. That said, I think you guys here (www.mydamnforum.net) are probably among the best examples of artists really taking advantage of technology. Perhaps not as portals for the public to access your individual art, but in the sense of information sharing.

Concerning confrontational honesty, boldness of concept, you are right, I have been horribly vague. These ideas need to be fleshed out. I should point out that they do not come from music. Rather, they come from what I perceive as general characteristics of communication through the internet.

People seem to be captivated by the quality of being exposed. Look at some of the blogs that have commanded millions of hits solely on the basis of the bareness with which people lay out their lives. I think this is one of the defining characteristics of our times and that it will necessarily in some ways become manifest in art. The way in which I envision the manifestation is the loss of the pretension that art springs forth fully formed, the separation of artifact from process. I see people accepting humanness even in higher art in a way that is, in my opinion, new.

Thanks to Bart and Doug Wamble for their thoughts and challenges.

The internet is the new media. This may seem obvious, but for most it has yet to sink in. Surely, for encyclopedic content, the internet's primacy is unchallenged by even the most philistine. But for art, particularly music, the internet and its culture of information sharing have been met with stiff resistance. Among more serious artists, at best the internet has been used to moderate effect as a marketing tool. Only among kitschier musicians is the internet seriously contemplated, engaged.

I should clarify that I am referring in this essay to the mechanisms of distributing and communicating about art, not the intrinsic properties of the art itself. I do not suggest that the future consists of technologically driven concept art produced through artists' dynamic interactions with an audience in cyberspace. I do, however, assert that the internet is the new media. It is not simply a marketing tool; it is the product.

The Business Model is Dead

I will not attempt to hazard a guess at the exact ratio of mp3s that are obtained illegally as compared to those uploaded from CDs or purchased legally on the internet. But I do not feel squeamish about assuming that it is a lot to a little. Still, despite the overwhelming proportion of distribution occurring on the internet, the majority of revenue is still captured in the conventional ways. Record sales. The music industry finds itself in the same position as AOL found itself at the end of the twentieth century. Rather than capture the traffic by distributing the music themselves, artists cede influence over their audience to peer-to-peer file sharing services. It is holding on to dying product, preferring to die slowly rather than quickly. In this essay, I will not address the future business model for music; I believe that the business model and the direction of art, while related, are determined by different sets of factors. Here I will focus on what the growing convergence of technology and art means for art, specifically music, irrespective of the business model.

For a long time, technology facilitated the dominance of music as commodity. Specialization of labor, mass media in the form of television and radio supported the model. Find a niche product for a niche market. Put it in a clearly labeled box. Sell it through the appropriate channels. The pressure on artists has been to define themselves as narrowly as possible. What television and radio did to make us stupider, however, the internet is beginning to reverse, allowing us at least the option of choosing a more intelligent course. With access to billions of sources of content, rather than a few tailored to the lowest common dominator, the discriminating audience, however small, can find the deeper good. Additionally, from the artists' perspective, the internet provides an unprecedented opportunity for growth through more robust communication.

Sure, one can point to the videos of pandas making hand-farts while playing the flute that dominate Youtube as an indicator of the 'internet culture.' But these are distractions. The existence of inanity on the web has no bearing on its potential as a medium for art. Plenty of people wrote stupid things down on paper in the past. This would never be taken seriously as a condemnation of books. The internet has brought the world information sharing, both in and out of academia, in a way that has never been seen before. It spawned the open source movement: collectives of software developers collaborating with no profit motive to accomplish some of the greatest feats in software engineering. Think of the Linux operating system, which is dominant in the cloud, powering the majority of most people's computing experience, whether they realize it or not.

Myspace is not the Answer

Musicians suffer from a variation on Stockholm Syndrome. They've been liberated. The record companies are dead. And while the internet has yet to produce a great business model to replace them, the channels of distribution, the capacity to share knowledge, method, process, and product are all there. What is our response?

“Well, it's comfortable in the box.”
“We've learned how to market ourselves, this is how it's done.”

In the presence of a technology that allows us to share everything, the entire creative process, where do we go? MySpace. We express who we are as artists through a short, self-congratulatory bio, a list of influences, and who our “Top Friends” are. Some are so enthralled with MySpace that they forego the luxury of an independent website.

Other musicians flock to the Dynamod web portal. Here the information from a MySpace page is thrown into a Flash application. In a world driven by text and search, musicians post unsearchable content. This is not only a failure to realize the internet's power in exposing the artistic process, it is also bad marketing.

Open Source Art

What is the alternative? Now I stumble onto more nuanced ground. Some people are instrumentalists and that is all they want to be. They make records, polish them, sell them. They do not like to talk about what they do, share the process by which they do it, or explore where it is that they are heading. From the internet they seek only a means to advertise where they play, what they are selling and a way to let prospective employers know how to contact them. In these cases, MySpace is fine, forget everything I said.

Select others have sufficient fame that they share more than records and dates even if not through their own channels. Interviews are published on journalistic web sites. For them the need to embrace the new order is not as urgent, but still beneficial.

For the rest of us, the internet presents the opportunity to be artists in the way that we, as musicians, have always understood it, not the way record labels and the business model have shaped us. Coltrane's music, Bird's music, Miles's music, were always about the process. The artifact was secondary. It was a glimpse, a snapshot. To Columbia records, Kind of Blue was Miles' crowning achievement, Bitches Brew another milestone. To Impulse, John Coltrane's A Love Supreme was his defining achievement, Crescent another burst of creativity. To those of us who know better, these were gems along a bigger path. We love the records, but we care about the path. Who, in possession of a bootlegged Bird record prizes it less than its official counterpart? We cherish the raw. The development of the idea. The snapshots along the way are great, but the path captivates us.

Our moment has arrived. The internet is the new media. Radio was great for selling records. Television was great for selling records. The internet is great for sharing everything. The process can now be exposed. Imagine having access to John Coltrane's mind when he was practicing ten hours per day. Imagine knowing exactly what he was practicing, what he was reaching for.

For some, this proposition might seem scary. Not having to explain what it is that we do makes it easy not to have anything to explain. How can one pass off mindless harmonic super-impositions in the absence of a deeper concept as intellectual art if expected to explain what it is that they are doing.

Still, any resistance to the new media is futile. The old media is disappearing. The live concert is not going anywhere, but the mass audience is in the cloud. The CD is done. It will probably not be sufficient in this world to share nothing besides a business card with several attached mp3s. An artist must also be a thinker, a writer.

Great art is always of its time. Bach, Dostoevsky, Picasso, Miles. I believe that in this time, the creative process must be laid bare. How else can we reflect the times in which we live? Jazz, without the trite attempts to commercialize, has been perfectly suited to benefit from this paradigm shift for at least sixty years. Instead, the territory is ceded to Indie rock musicians who have managed to be more savvy and demonstrate themselves more literate in spite of the intellectualism associated with jazz. Art music will become the dominion of ideas again. The highest art in this age will be characterized not by the illusion of perfection or the air of intellectualism but by boldness of concept and an almost confrontational honesty.

Keeping this public record of my thoughts and experiences has forced me to consider the issue of anonymity. Originally, instinctively, I posted anonymously. The more prudent route. Eventually, two things inclined me to reconsider this choice. First of all, several discussions with friends lead me to wonder whether anonymity or exposure presents a greater obstacle to honesty. Also, as my ability to play the saxophone and compose music resurfaces, I have thought about the role that these writings, thoughts, experiences have in my art.

Honesty

Issues concerning anonymity and honesty occur to me along along two dimensions. The first is the conflict of interest. Situations in which one's public association with writing could affect what is written. The second is accountability. By having to put one's name on an argument, a writer must carefully consider what is written. Perhaps this extra validation serves a purpose besides to create conflicts of interest, forcing the writer to refine an argument, making sure that he/she will be able to defend it.

Faceless writing removes many conflicts of interest. Firstly, it affords a writer the ability to put aside his reputation. Without fear of exposure, a writer needs not fear the specter of association with any particular thought or view. Everything is on the table.

Equally important, in more personal writing, anonymity removes the incentive to lie for vanity's sake, underplaying shortcomings, overplaying achievements. The writer can lay bare his life, knowing that he/she isn't going to gain or suffer in life for having depicted himself/herself in any particular way.

On the other hand, an exposed writer can benefit from the added scrutiny that accompanies taking credit for one's work. Having his/her identity tied to his/her writing could actually serve to keep a writer honest. In the absence of any consequences for flawed arguments, to what standard is a writer held? Exposure and the accountability it entails could force a writer to refine arguments, trim the fat off of unnecessarily heavy-handed or offensive offerings.

This raises the issue of omission. There are times when exposure and the prudence it requires push a writer to withhold an argument, point, or even an entire paper. Three questions need to be asked. How damaging are these omissions? Are the sorts of things that would be omitted better left unsaid? If these omissions compromise the work, is the effect damaging enough to override the benefits of exposure?

I think the answers to these questions are highly dependent on context. A writer in a country with a stifling lack of freedom might find it impossible to write in the open without sacrificing everything he/she has to say. In other situations, it is conceivable that one might unnecessarily aggressively attack an idea or person when not filtered by some degree of judgement. As concerns my writing about art, for example, I think the things I could say that might compromise me are probably better left unsaid, not necessary to assert my ideas.

Art

On a more personal note, as concerns my own identity, I face a consideration external to my writing. As a saxophonist and composer, I necessarily lay bare who I am to some degree. As an artist, I believe strongly in the openness of the artistic process. Especially in jazz where process triumphs over artifact, I believe that the process and all that inform it are relevant to the experience of the art. To that end, my writings, both on and off the topic of art, inform my art. Even if hiding my writings were to present no obstacle to their honesty, would it compromise the honesty of my art?

After much consideration, and with even greater ambivalence, I have decided to incorporate the former home of my writings, spinachcrazyhotel.com, into my artist site under a Writing section.

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.