Autoimmune Encephalopathy

A few years ago, during my first period of remission from Autoimmune Encephalopathy, I wrote about what I perceived as a failure by musicians and artists to recognize the importance of the internet and to adapt accordingly. The internet, I argued, fundamentally changed music distribution, and should force intelligent musicians to reconsider how music is made, how often it is made, who it is made for, and everything else in the pipeline between instrument and audience.

Several years later, many musicians, notably indie rockers have adapted somewhat, albeit unimpressively to the new landscape. Sadly, while Lady Gaga and Justin Bieber have seen the potential of YouTube, most jazz musicians remain unrealistically tied to the idea that they can censor their image and tightly control their releases, popping out polished nuggets of final product while hiding the ugly innards of the artistic process from the public.

For a long time, I have felt strongly that I've seen an alternative - a symbiosis between online content distribution and live performance - that could enable musicians, but specifically jazz musicians to reach a wider audience more effectively than ever in the era controlled by record labels. However, while spending huge chunks of the last few years more concerned with reacquiring the ability to know what day it is, and to have feeling in my hands, I've been unable to produce the sort of torrent of artistic output that is necessary to fuel the sort of content volcano I imagine.

Now, with greater stability than at any other point in the last several years, I'm facing the challenge of backing up my assertions by providing the sort of internet-centric experience that I've envisioned.

For starters, my newest work, "Hurricane Suite," composed during evacuation in the suburbs from Hurricane Irene - I've already posted a couple bootlegged clips on the website from our first public performance of the work a quintet. Tomorrow I'll be performing the same work (originally imagined as a duo for bass and saxophone) as a saxophone duet with Lucas Pino at Lasers in the Jungle. I plan to post video from this engagement as well.

Personally, growing up, I couldn't care less about the polished turds of jazz recording. Hank Mobley records never inspired me. However, investigating the work of someone like Charlie Parker or John Coltrane - collecting bootlegs and getting deep into their artistic process, hearing them work out the material day after day, that's what inspired me to become a jazz musician.

I hope to provide the sort of experience that never could exist before this technology - capturing high fidelity bootlegs of concerts and on-the-fly recordings and posting them with regularity - providing a path so that anyone mad enough to follow my narrative can easily jump on.

Dear Yamaha,

I have spent most of my life as a saxophonist blowing into Selmer saxophones. From a young age, I was told that they were the best and, despite my otherwise contrarian nature, it seemed plausible enough that I never spent much time considering newer horns, especially not any manufactured outside Paris.

Over the ensuing 10 years since I bought my first professional model saxophone, I have changed mouthpieces, switched reed companies. I graduated from high school, went to college. I fell in love for the first time and had my heart broken for the first time. I graduated from Columbia with a degree in Mathematics and Economics, and kept a music career going too.

Along the way, I lost my sense of smell, suffered a catastrophic presumed autoimmune attack on my brain, decimating my memory and higher cognitive function, endured 2 spinal taps, plasmapheresis (incompetently performed, blowing out a vein, begetting what promises to be a lifelong fear of needles), five trillion different cytotoxic chemotherapeutic therapies, and high dose steroids.

Yet throughout the entire decade, despite the constant doubt cast into every corner of my life, I never stopped to consider that amidst all the chaos and uncertainty in the world, perhaps my deeply ingrained faith in the quality of Selmer's saxophones warranted reconsideration.

Finally, this past weekend, escaping from a little too much family time in Smithtown, Long Island, I stumbled into Cornet Music. Looking to try out horns, I asked a friendly staffer if they had any professional Yamaha sopranos I might be able to try.
He came back with what I believe was a YSS-62, presumably not even the top of the line.

Not sure what to expect, but glad to be holding a saxophone in an air conditioned practice room and not losing years of my life to the heat wave while sitting around a pool, I gave it a try, using a stock mouthpiece.

It blew my Selmer Series III away. Your horn was so much better than my soprano that I was embarrassed to have bought mine in the first place. The intonation was superior, the tone more robust, the feel heavier, and the key-work equally nimble. I am afraid to consider how much better than my horn your top-of-the line soprano is.

Alas, I am a 25 yr old trying to play art music in New York City while paying hefty medical bills in an attempt to remain alive and lucid. So my saxophone purchasing power is minimal and - left to my own devices - I might never (and certainly not soon) be able to afford one of your real deal sopranos.

So here is my audacious and perhaps laughable request. I would like to endorse your product! With my joints gimpy, I might not be quite as dextrous as a young Michael Brecker (but neither is anyone else on your artist roster). And my website is surprisingly well trafficked for a relatively unknown kid playing saxophone in New York City.

If you can be so generous as to gift me one of your brilliantly crafted sopranos, I will happily do any or all of the following.

1) Place a notice of endorsement with a link to your products somewhere on my website such that it will appear on every page. While I might be unknown, my site does get some eyeballs.

2) Write the best commendation of your horns of any endorsee you'll ever have. A literate jazz musician is a rare commodity.

3) Stick Yamaha stickers on everything I own.

4) Anything else you can think of, short of tattooing your logo onto my forehead.

So, what do you say?

Yours truly,

Zachary Lipton

Like Inspector Jacques Clousseau to the beggar and his monkey, I hereby issue a warning to the random googlers and netizens and sometimes musicians that frequent my site that I plan to start writing again.

When caught oscillating between health and heartbreak, the imperative to document gradually diminishes. Falling ill for the first time is terrifying, and the first remission is exhilarating. By the tenth time, falling ill is merely exasperating, and remission greeted skeptically.

So I stopped documenting. The story lost its freshness, and I lost faith that my narrative of a story of recovery was anything more than a fool's delusion. So I turned to gallows' humor, less suited to this very public venue.

But hope has its season. And accordingly, I assault you with my scribbling.

Changing what I can, hoping the rest will follow suit.

Most people entertain a deluded concept of the practice of medicine. In the fantasized version, nearly all common diseases are well-understood and their treatment algorithms are well-tuned according to the latest research and adjusted as newer treatments are developed and clinical trials performed. In contrast, a large number of idiots, quackadoos and conspiracy theorists imagine that most of medicine is a sham, that doctors know nothing, that more harm than good is done by western medicine. While these purveyors of homeopathy (treatments that tend to be at best ineffectual and at worst dangerous) are far from the truth, so are those who imagine medicine to be steadfastly scientific.

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

After two years of cycling between ten percent and fifty percent of my former cognitive and physical capacity, I have progressed little but learned much. I have acquired more knowledge than I can currently process about my own health, the myriad families of medical conditions that can cause neurological complications, and the problems that plague the healthcare industry itself. In this article, I will elaborate on some of the horrifying discoveries that I have made on my medical odyssey.

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

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

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

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

So I relapsed.

Taken by Surprise

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

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

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

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

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