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CHEFILEPTIC

by Nate Bennett

 

EPISODE 13

Hello fellow consumers of information!  As you may have heard from this and/or other trustworthy sources, I’m Nate Bennett, and this is the thirteenth episode of Chefileptic, my autobiographical podcast series.

Today I’ll discuss the time period immediately following my final phase of seizure study at Stanford, including the music work I dove into during that stretch as well as the effort it took me to ‘size up’ the music I had done during the time period before the study.

Also, I’ll pontificate a bit about a few historical figures that I’ve both related to, and developed respect for, as I’ve learned about how they dealt with their own apparent seizure-causing medical conditions during the times and in the settings in which they lived.

If, after ingesting this segment, you’ve found that it was engaging, or possibly even enjoyable, and/or if it makes you think of someone else who may, make sure to let them know about it!  And make it easy for ‘em, by sending them a link, or at least spelling out the site’s name. I’m glad to share this series for free, but it won’t pop out at them in ads or envelop them like fads.

 52. time drones

53. how the pros don’t do it

54. heroes in history

52. time drones

After I’d moved into Amy’s house by the Boardwalk, it took a few months to get any kind of music workstation set up, and I finally began to ‘ease’ myself back into music again. 

I let myself play old simple familiar cover tunes and started trying to sing.  I was a little surprised because my voice did sound good, though it seemed to have changed, and I had to re-learn how to work with it. 

As I waded into the pool of my previous obsession, I knew that beating myself up right off the bat wasn’t the way to get back in touch with my prior skillset, but I had to admit that I didn’t hit the dustiest shelf first—that is, the most recent work I had done.

Somehow, I knew that I was not totally pleased with Next Times, but I did not know why.  So, I procrastinated listening to it as long as I could.  Later, I’d learn that for a number of reasons, I’d have a big cleanup job on my hands with that one.

I instead got into a completely different kind of project, which I was able to do with my computer and a set of headphones (with very little instrument work) because I was using a bunch of material that had been recorded already, back when I lived in the apartment.  For this thing, I was mostly doing editing and mixing work.  The project, which I named Cloning Drones, was culled from about five hours’ worth of ‘noodling and looping’ tracks from when my old how’syerdey buddy Timothy Beutler had visited Santa Cruz from Berlin back in 2011 and again in 2012.  My memories of his visits are pretty foggy, but I’d been dragging the files around for a long time, because I knew I could make something out of them sometime.  Spring of ‘14 ended up being the time.

I got way into making Cloning Drones because I was able to work with something that was already recorded.  It all just needed to be sorted through and cut up and stitched back together, and this gave me the chance to ease back into the world of sound production without constantly being angry at myself for having lousy chops on the instruments. 

Timothy had been living in Germany for years by that point, and I’d decided that I wanted to do this project and surprise him with it, if only because likely by then he had every good reason to think that it would probably not ever end up happening.

It’s ended up being a pretty extreme-sounding and abstract piece of instrumental and electronic work, and Timothy and I agreed after he heard it that it’s unlikely to have ‘commercial potential’, so I just posted it online for free listening.  It’s not music for everyone every day but I felt pretty sure that it would have its time and place for somebody, so I was glad to share it with whoever might be looking to listen to such a thing.  For anyone who might be listening to the podcast version of this book, it’s that crazy stuff that I’ve been using in the background when I describe my seizures.

When it was done, I got ahold of him for the first time in way too long (I think), but anyway I sent him the goods to listen to half-way ‘round the world just to say, ‘suprise brother!’.  I’m fortunate to have had the opportunity to have learned with my old howsyerdey bandmate, who had grown into a true music-master over the years.  See, I could remember that kind of stuff, just not…Next Times

So, I finally had to take the big step and listen to that one.

Digging through old email helped me figure out that it was started in October 2011 and the CD release party was on May 24th 2012.  I still seem to be doing really badly with this whole time period in my memory.  I mean, I knew I made the album and who had worked on it with me, but when I finally listened back to it, I couldn’t list any of the details like who did what on what tunes.  In fact, I couldn’t even list the names of the tracks in order.  This damn thing was supposedly ‘finished’ in 2012, only three years before that point, but it seemed like it might as well have been made thirty years before, because I just… couldn’t… recall.

I’ve been able to glean a lot of info about my own history from my saved emails.  In case I forget to mention it later, in my still-imaginary List of Tips For People With Memory Issues, NEVER THROW AWAY YOUR OLD EMAILS would still get the number-one spot for sure. 

By searching through my years-old email, I managed to scrape out some of the details about the album.  I sifted through the communications I could find there from that stretch of time, because I’d used that forum a lot to chat about the project with Mike and my other music friends as I’d made it.

So, I re-learned that I’d begun the project when I was living in that apartment, to begin with.  I’d managed to pay up whatever my debts were at that moment well enough that I’d figured I could both make the album and afford to print CDs of it (if I just compromised a little with the packaging, apparently). 

I was dealing with the whole stopping-driving-thing back then, and was still managing to keep working while commuting with my bicycle and using the bus.  The apartment was cheap, and not having vehicles had at least made life a little cheaper.

I wasn’t using weed or drinking at all during that time and I was clearly bored, lonely, and doing whatever I could to keep away from the pit of despair by coming home from work and writing and recording with my computer.  The apartment, as I explained before, was tiny and basically crammed with music gear.

So, I had recorded whatever I could in the apartment and then arranged with Mike to finish the album by doing stuff that needed good microphoning at quilted fish.  I was able to handle a good amount of the work at home by using my electronic drums, keyboards, bass, and electric guitar all plugged directly into my recording stuff while listening only on headphones.  This had enabled me to work late at night, without disturbing the nearby neighbors.

I guess, as usual, I was hoping at first to make something I could get others involved in, so just maybe they might possibly want to help me out yet a little more by ‘supporting’ the album when it was finished… again, I know I was a hopeless case and all. 

Anyways, I’d poked and bugged former bandmates for help with it, and ended up working most with NAP veterans Wendy (female vocals), Tim Gard (horns, viola, and mixing), and Brett Wiltshire (bass).  Tim Beutler from how’syerdey-times had co-written and recorded parts (melodica, acoustic guitar and vocals) for one of the songs from Berlin.  I’d done ‘critical microphone’ recording at quilted fish with Mike Formenti, and he and Tim Gard had helped me mix it up there.

I know that at the time I made the album, I was running a pretty basic ‘safety-first’ routine.  Basically, the more time I could spend at my place, the better, because flipping out in public would only greaten the odds that I’d end up in the flush-pipe on the whole work thing, and all the other evils that I knew could happen probably then would.  Instead, I kept myself busy with my music and writing, hoping there might be some kind of positive results—maybe even (dare I say) some way to make income that wouldn’t just stop if I spazzed in the wrong place at the wrong time.

At the Boardwalk house, I recovered most of the history and details about that album with ‘research and refresh’ missions through my old emails and scraps, which I undertook before daring to re-listen to it.  Reading about it first somehow had to happen before I could listen to it.  I wasn’t ready to hear it yet.

And doing that kind of research–about my own recent past–is always weird. 

Reading back through old email (from this other guy I know was me) from three or four years back is often embarrassing and scary.  I find that not everything in that email history goes along with happy memories, and not all of the memories from making that album were positive–though most were of course, because I was communicating with some really great people. 

Thing is, now that I’m looking back at him, I see the desperate, lonely and bored bum who was bumbling along, trying to rally people to play his tunes.  That guy had apparently thought he could just stroll into quilted fish with Wendy and Tim Gard and nail all the vocals and microphoned instruments for that entire hour-long album having done minimal rehearsal, in a very short amount of time, because the rest of the parts had already been tracked in an apartment.

Then, on top of that, I guess the fool thought he’d be able to mix that all up to his delight and then his good buddy Mike could just master it all up real good in another real short amount of time… of course real fast and cheap and all. 

And finally, that loco man figured he’d just get ‘em all printed up and wrapped up and ready to roll with some low-budget printing company… woo, looks like that didn’t work out easy, either.  Apparently, there were errors with the printing, adding stress because I’d somehow made a stupid deadline by setting up a CD release party. 

So, the project had ended up under the pressures of both deadline and budget, and when I finally did listen, that was of course part of what I heard.

Hearing it was something like when I’d first heard my song “All My Machines” after a long round of seizures years back.  I knew it was me, but it was not, it was he, and it was him.  And even before I heard it, I knew that somehow, he’d let me down with this one–and I was angry at him.

With my other albums, even though they never sold any significant amount, I was always proud of them and glad to push them around as far as I can remember.  But I had some kind of chip on my shoulder with this one.  Was it the material?  The songwriting?  Did I not remember them now because they sucked so much?  Could I not recite more of the material because I was not proud of the core material itself?  I was so far from the material that I could not have told you what all I was displeased about before both researching, and then (finally) re-listening to it.

I had figured that I’d still be pleased that it was mine after hearing it; I was probably mostly just freaked out by the fact that reading the titles did not make me able to play or recall the material very well… it was so damn recent but yet it was so lost in my memory. 

So, when I finally threw it in and listened, I was pleased in some ways, but that wasn’t good enough.

Really, it sounded to me like a project that was going pretty well, but then got rushed together at the end and came off sounding amateurish and short-of breath.  So, it was a disappointment.  I was after all, still hoping that I’d put any doubts immediately to rest by hearing it, and unfortunately that didn’t happen.

I was displeased with a number of details that all seemed to be things I could and should have noticed and fixed up before calling the project ‘done’, yet somehow, I’d let myself call it ‘done’. 

Why had I done this?  I mean why had he done that?

As I studied it with my first close post-surgery listen, I thought of a grand house being built.  Maybe like something Victorian or maybe something ultra-modern; either way, a lot of time and effort had gone into the design, the materials, the craftsmanship, until right at the end when the deadline came up or the cash ran out, and a shitty coat of paint was sprayed over it and a cardboard sign with the word ‘done’ scribbled on it with a permanent marker was stuck in the front yard.  And now, only a few years later, it was standing alone in an empty field with that paint peeling off and it looked like nobody had been around it for years, with the sound of the wind howling as a tumbleweed blew by.

And one sure had blown by.

Since this project had been “completed”, Timothy Douglas Gard, who was not only my roommate but also my musical colleague and co-conspirator, had moved on.  His death occurred sometime in the late hours of August 23rd, 2014. 

After he’d left Santa Cruz, he had lived briefly in Vegas, and hated it, and then decided to head for Portland.  He had said that he’d thought that the hot weather was bad for his symptoms, and apparently other MS sufferers had agreed with this, so he was going back to the northern realm.  Unfortunately, it appears he was not comfortable enough after a short time there to keep sticking around this life.

I had cleaned up and buttoned up that house we’d shared, and he had returned some of my stuff that his movers had accidentally grabbed when they came to get his stuff.  We were cool.   

He and I hadn’t exactly had a great ‘break-up’ of our roommate situation, in spite of all good intentions and efforts, but we’d gradually had more and more ‘e-contact’ and were even using some humor there at the end.

My last communication with him ended up being a couple of simple texts we’d bounced during that last stretch where I was all wired up, and waiting to seize during that third stay at Stanford.  He’d heard that Amy and I were engaged, and he congratulated me, in his own way.  I remember in the last text I’d gotten from him that he’d said something like “well, looks like you’re going to be all snug-bug-rug now”.  I remember searching for the right words that would wish him well, but I knew he wasn’t doing well–and he could smell bullshit from a mile away–and that text had ended up being our last contact.

As roommates, we’d had numerous conversations about religion and God.  He was ‘too smart’ to believe in any kind of higher powers or greater purposes or designs, but somehow, he’d cut me some slack and for my beliefs.  With both of our mortalities constantly on our minds, I think we both were comforted by having someone to talk to.  I know I told him I thought I’d see him sometime after this life had ended, but he thought that was unlikely.  I still hope I end up being the one who was right about that—I’d love to heckle him in the next life if I ever do get the chance to.

A few of his Santa Cruz friends finally got together for a nice little ‘wake’ for him at the beach on a Friday that November.  It turned out to be real sweet—a bar-b-que at sunset on a west-coast beach kind of a thing.  I think he would have approved.

He’d worked hard on Next Times with me.  He’d played a couple of parts, but mostly he helped with the mix up at quilted fish.  I know that he did, but not because I remember.  It’s more because I did that research, by going over those old emails and notes, of which there were plenty from when the album was made.  Much of the work I still wanted to ‘keep’ when I listened to the album is work that I did with his help.

My scrubbing through my email trail proved that I’d also done a lousy job of promoting Next Times.  I’d gotten a reasonable gig together in downtown Santa Cruz for a CD release and put an ad in the local entertainment paper, and that was about it.  The album hadn’t gotten any real airplay or attention that might’ve justified making it, but then, it hadn’t turned out good enough to deserve such attention anyways.

53. how the pros don’t do it

Now, since I had made Next Times, I had not only had plenty more seizures but also the entire Stanford adventure had occurred.

I’d managed to bring my pc into the hospital with me, and even a MIDI keyboard, so I was able to do something besides just watching tv.  As I poked around on the net, I had managed to find plenty to read about sound production, and I read a number of articles basically about ‘how the pros do it’. 

I had realized that a number of things about my approach to music through the years had kept me from breaking into the zone of making recordings with ‘commercial appeal’ because I not only didn’t know jack-shit as I started hitting the record button, but also because (just like learning about music theory) I hadn’t ‘eaten my vegetables’ good enough to have a better understanding of how records get made in the ‘high-end’ studios that make real ‘hits’.  With my hopeful-hack approach, I instead had to try and fail at just about everything while recording to figure out why what wasn’t working.

As I surfed and read in the hospital, I thought about what kind of resources an artist with a ‘big contract’ had to work with and, naturally, compared this all to myself. 

Of course, one can assume that if any artist has landed a ‘big’ contract, they probably would be starting off having their health in a workable and manageable state, or likely the big company would not take the risk of signing them. 

Lesson #1 is that those ‘big machines’ always cover their own asses first, every time.

After being signed, an artist is also probably then going to be working with some kind of management, and some ‘pro’ production assistance, and they’ll likely work with some ‘oversight’ to make sure that any invested budget is well spent.  I couldn’t help myself, I read and more and more out of sheer curiosity about both business and sound production. 

What makes a hit sound like a hit anyway?

I had already realized long ago that I probably was not going to end up being the kind of artist to nab one of these ‘big deals’, but when the seizure diagnosis came along, it had simply made that conclusion seem doubly clear.  I’d moved from Michigan to California to be an ‘indie artist’, and I was then (and still am) proud of that decision, but regardless whether or not I’d ever be a ‘big rock-star’, I still wanted to make good-sounding stuff, if only for my friends and family to hear. 

As I sat at Stanford, though, I couldn’t help but try to learn how it’s really done.  Just how do they make the ‘big hit’ music in their studios?  What tools did they have that I didn’t?  How are those tools used? 

What can I say, it’s just a part of my particular area of fascination, and I had plenty of time to kill while trying to stay up all night and skip meals and everything else I did to trigger seizures so the doctors could watch.

Later, at some point after that last phase at Stanford had ended, Amy and I watched a drama-documentary about one of my hero-bands from when I was a kid.  It told the story of how that band had come together and gotten super-famous, but it also included a bit about them meeting a famous industry producer who ended up working with them through the years to make many hit recordings.  This producer was actually behind lots of ‘big hits’ from that era, so I was really fascinated—but it really pointed out what the ‘big stars’ had to work with in the studio that I just plain did not.

One of the conclusions I had already come to at some point was that the biggest gap between me and quilted fish vs. the resources the recording industry has to work with is the sheer amount of time that can be spent in the studio.  Over the years, Mike had equipped his studio with more and more nice mics and recording tools, and whatever rehearsed performance was brought up there, and executed well, could be captured well. 

However, getting there, getting the recording time set up, and having Mike or another capable person to sit at the mixing board for little (or more likely zero) pay had no chance of being near or equal to the resources that were spent making some of my favorite albums–some of which supposedly took years of high-end studio time with teams of specialized engineers to make. 

Of course, being a proud idiot and all, I had always chalked up these differences between my ‘indie’ setup and the major recording industry to my simply not being good enough and needing to work harder.

So, before I re-listened to Next Times, I knew that all of that recent reading and pondering was hanging around in the background of my mind.  I probably knew already that I’d finally hear Next Times and be disappointed that it didn’t sound like a million-dollar album, despite whatever efforts and chump-change had been put into making it.  After all, if it sounded that good, I wouldn’t still have had cases of copies of it, and I knew it.  But I still held out hope that those boxes of CDs would still end up meaning something and being worthy of sharing. 

And as it turned out, they almost were.  Almost.

So, as a ‘total outsider’ basically listening to ‘someone else’s’ project, I listened with a tough and critical ear. 

As I listened, I realized that most of all I wanted to ‘rewind’ and spend more time in the studio polishing up the vocals.  I wanted to have more time to record more layers of harmonizing backing vocals–more time for more of those ‘studio tricks’ that go into making albums that sound better than ‘demos’, most of which involve the vocal parts. 

But the songs didn’t suck.  The words did break through to me, but they’d probably only have demanded the attention of a total stranger here and there, where more time had been spent on layering and making sure the music and rhythm aspects of the performances were all ‘perfect’ before saying “keeper” and “next”.

Now that I was hearing it more like somebody else’s work, my ear also wanted to simplify some things, by moving some bits around a little more and ‘tidying up’ sections that were just too cluttered up.

And ironically, the weakest track was the damn title track.  It also happened to be the longest track.  What the hell had I been thinking?  The thing was like ten minutes long, and had plenty of hot licks and good ideas, but it was like the editor-in-chief took a vacation…  A ‘pro’ producer would likely have handed me a pair of scissors and said, “come back with a third of this”.  Naturally, if some radio-DJ ever had thrown the CD in and picked one track, they’d assume the damn title track would be a good ‘first pick’ to try, and then they’d probably have faded it down and pitched the album in the trash.

Many problems were arrangement related.  Most parts were played well enough, but when stacked up they had made the mix sound ‘cluttered’.  The result was that in many places the instruments were distracting from the words, which are really ingredient #1 for listeners.

It took till later on for me to figure out another crazy element that had caused many problems too—my recording software.  As it turned out, a ‘glitch’ had introduced lots of problems at the final step, when mixes are ‘bounced’ into a completed stereo track.  What this meant was that essentially, once a song’s mix was called ‘done’ to the point where there was ‘enough of this and not too much of that’ in the studio, the big, final ‘combine’ button had actually introduced errors, so what ended up on the CDs wasn’t even the same product that had been called ‘done’ in the studio!  It took me lots of back-tracking to figure that one out, but by then of course, it was beyond way too late anyhow.

Finally, I’d rushed through the final ‘polishing’ steps.  I couldn’t help but notice that some of the tracks were louder than others, and some tracks were too quiet in some spots—an acknowledged main symptom of amateur work.  These final adjustment steps, which are used to make a project sound ‘consistent’ throughout and most comparable with ‘the industry’, are one of the number one reasons serious projects almost always use specialized separate facilities for a process called ‘mastering’, which is done by someone who specializes in this kind of work. 

My previous two albums were mastered at separate mastering facilities (a step which usually costs more than a thousand dollars for each album), but we had done the mastering for this project on our own—again, under those pressures of deadlines and budget—and it showed.  The album didn’t sound terrible, it just sounded too homemade, and both the ears of any recording connoisseur or those of any ‘normal listeners’ could tell, whether or not they’d know why.

Add to that the fact that it was in this little money-saving cardboard slip-jacket, and you’ve got all you need to keep it from ever having a chance of being taken seriously.

But now, I had three or five boxes crammed with this damn project to lug around with me, and I was not proud enough of it to ‘push’ them, even if I did find the energy (including rebuilding my voice and instrument skills) well enough to consider doing so. 

I was pretty sure, however, that I could improve the album to the point where it would be worthy of my pride, and with minimal effort compared to the combined efforts of everyone who had contributed to it.  I was burned by knowing that I’d already let these great people down by releasing it, when I was not yet proud enough of the product when I had called it done. 

What could I do?

After all, I was caught off-guard more than once as I listened to the occasional really good-sounding spots, when it did poke through into sounding like a real ‘pro’ high end production for a moment here and there. 

The writing also got to me here and there… it was like that guy in my recent past was writing to taunt me or poke me now somehow.  Some of those lyrics really exposed him to me, and helped me ‘find’ him again, a little bit. 

He was me, after all, and as I listened, I could remember some of the time I spent writing those songs, especially when I heard the song ‘A Ride’.  I remembered how I was having to face how much I was going to miss riding my motorcycles, once I’d finally decided that I couldn’t justify driving any more.  As I’d written it, I had wanted to remember and celebrate all my great memories from my years of riding, without just feeling sorry for myself during that dark time.  It’s a kind of old-fashioned and sad song, but it really had ended up with a ‘grand’ feeling to it.  I remembered the feeling of victory I’d gotten when I’d finished writing it in that lonely little apartment.

Then, there was all those instrument parts on the album.  Who was this on the drums?  Some of them sounded really fucking good… oh wait, that was me… I played those?  Damn.  And damn-damn, listen to that guitar part right here… he did have some skills after all, he just needed a little ‘control’ maybe… and check out this harmonica part, and that piano or synth or sampler part…

Turns out, whether I like it or not, he was still a better player back then than I am now, years later—even though I’d still like to think I could once again regain those skills.

And I realized, back in 2014, that I wanted to fix that album someday—so I took all of my cases of copies of it and threw them into a nearby dumpster.

In that little ‘home studio’ I had put together in that house by the Boardwalk, I opened up all the song files on my computer, and realized that I could greatly improve the album, just by using the parts that had been recorded for it.  That’s when I decided that someday, if I had the chance, I’d ‘rebuild’ it from those tracks.  And while I knew that it still wouldn’t sound like a big high-dollar recording industry product, it could yet become something better, something I’d be proud of.

And I knew that if that ever did happen, I’d call the new-and-improved version Better Next Times.

54. heroes in history

Over time as I’ve read more and more about seizures, I’ve also gradually noted an always-growing list of people throughout history that were also known to have had seizures.  I’m sure it’s probably fairly normal for people to do that with any disease that they get told they have; we want to know if anybody else somehow managed to ‘win’ with that same particular hand of cards we find ourselves looking at.

One thing I’ve realized is that not everyone always agrees on the whole ‘retro-diagnosis’ thing.  As more gets learned about a person or community that suffered from some kind of medical problem, more educated and specialized people will line up in agreement, but there’s often at least somebody disagreeing, who sometimes makes their argument with compelling and educated reasoning. 

I’ve found that a number of times, a historical figure that I had read was a seizure-sufferer had been misdiagnosed, possibly even slandered at the hands of someone telling their story later on.  That’s the thing about history, it’s only as real as the teller can tell it and the reader can read it, with however much time going by in between.

Some figures seem to have stronger modern-day acknowledgement and agreement about their seizures, like Vladimir Lenin (the first Premier of the Soviet Union), who died in 1924 following a 50-minute round of status epilepticus.  Other figures are reflected on with a gradual agreement of ‘misdiagnosis by association’, like Isaac Newton, whom someone had written criticism of which called him ‘mad’ and referred to seizures as a slanderous remark.

So, the list is a flexible thing that can be argued about, and I’m not an expert—just a consumer.  

Seizures seem to have an odd place in history—sometimes they are described as afflicting characters that otherwise seem tough and strong, like Napoleon, Alexander the Great, Harriet Tubman, and Julius Caesar.  Sometimes they are a described affliction of characters that have important, even religious ‘visions’, like Muhammad, Joan of Arc and Socrates. 

Often, people acknowledged to have had seizures are creative, like Neil Young, authors Lewis Carrol and Edgar Allen Poe, and composers Tchaikovsky and Handel.  Sometimes, seizures have had direct impacts on the works that these figures produced.

It’s when you read all different lists from all different sources that you really get a sort of generalized character-view.

As I’ve gradually learned to understand the different varieties of seizures better, I’ve found myself naturally drawn to the stories of others in history that may have had experiences similar to my own.  As there are many kinds of seizures, I find myself most fascinated and enchanted with stories of people who had seizures most like mine.

I have more recently come to learn about and have some ‘seizure-respect’ for author/philosopher Fyodor Dostoevsky (who lived from 1821 to 1881).  He fascinates me in several ways.  For one thing, it sounds like, medically-speaking, we likely had a comparable pattern and variety of seizures.  Of course, there is no way to prove such a thing, because apparently my particular type of seizure disorder is really rare and all, but it appears that the history that describes him speaks of similar seizure activity.  Several of his books contain main characters that have seizures, and their stories are considered to be sort of ‘semi-autobiographical’. 

He spent eight years in exile in Siberia for reading and circulating banned materials in Russia with his pals in the ‘Petrashevsky Circle’.  Apparently, he was to be executed, but at the last moment a ‘stay of execution’ came from the Czar.  This punishment pattern was supposedly becoming known as a ‘false’ or ‘mock’ execution, used as a way to scare as much shit as possible out of someone before letting them live, and then maybe just locking them up for a while.

With this guy, I have found myself having much respect for his place and time and in history and for how he managed his situation–most of all how he managed to keep himself alive while figuring out how to feed his family between his seizures.  Back in his time, of course medicine was nowhere near as advanced as nowadays, and his ‘fits’ were seizures that included an ‘aura’ phase, which for him was ‘super-exciting’ and even ‘euphoric’, but led into a grand mal phase, that sounds as though it led to lots of different partial-phases of seizures… kind of like mine.

He apparently found himself with a heavy amount of debt in Russia, and had moved himself and his family around to evade his debtors.  Meanwhile, he wrote like crazy, and kicked out like eleven large novels which entangle epilepsy-related scenarios galore.  In his works, a line gets tested that I know I’ve had to draw for myself—the intentional misrepresentation of ones’ own seizures.

Any discussion of that odd boundary catches my eye, because at some point in my life I’ve made my own decision that I could never intentionally let myself say that I had any seizures when I knew I hadn’t.  That’s a card I had decided I would not (and still don’t) let myself play, perhaps out of ‘superstitious’ or ‘karmic’ beliefs, although I’ve been tempted to, many times.

Sometimes I think that making this decision was one of the better steps I had started to take when I realized what I was up against—seizures that could happen at any time, cause me to lose time, and possibly to stay gone for longer lengths of time, perhaps eventually forever. 

I remember back to something my band-mate buddy Zoltan had told me many years ago.  His family is of Hungarian descent, and he had mentioned that there was some kind old-world adage-wisdom kind of phrase along the lines of what would translate in English to “you don’t paint the devil on the wall”.  I had thought back to that very statement as soon as I’d begun to put together what my pattern of seizures could influence me to consider doing and saying.  Especially once I had learned just how dangerous my seizures could be, I never used them as a false excuse to call in sick, or to tell anyone in the world of medicine that was ‘rating’ the severity of my condition, that I had suffered from any seizures during a time when I knew I had not.  I just dare not ‘go there’ myself, though apparently Dostoevsky had also considered this boundary.

As I’ve watched the forefront of neuroscience in hopes that I’d be able to benefit from its rapid advance, I’ve realized more and more that we do know much more now than we did not so long ago about the brain and how it works (and malfunctions).  No wonder there have been so many generalizations and misdiagnoses and no wonder at different times in history people who were known to have seizures were treated as an ‘outsider’ group by societies.

Not that long ago, what we now call PTSD was called shell shock, and what we now call seizures was called the falling disease, often lumped together with all kinds of neurological disorders under the general banner of madness.  My seizures have been so varied and so bizarre over time that I can only imagine that this would have been my classification, had I been born around the time of another of my highly esteemed and likely fellow seizure suffers of the past, Vincent Van Gogh, who lived from 1853 to 1890.

Like me, he appears to have had good times and bad times as his seizures came and went.  His younger brother Theodore lived with him, and looked out for him for much of his adult life, enabling Vincent to get that (now precious) painting time.  My bro was my roommate for a number of years and also has helped me manage as well, which enabled me to keep a job and work on my music. And also like mine, Vincent’s well-meaning younger brother eventually found himself unable to help.

Unlike me, in Van Gogh’s time there were far more primitive diagnoses and tools for doctors.  He ended up being treated with bromide, which in his era was ‘the thing’ for controlling grand mals, and as it was used more and more to treat him, it became less effective.  He gradually grew a taste for the then-popular combo of absinthe with alcohol, and he’d often be institutionalized when he’d have seizures, which happened to him more and more often as he grew older.

It appears that when he’d start ‘flipping out’, he’d be ‘restrained’ for however long until he’d chill out, and then he’d bounce back to a ‘normal pattern’ until he’d start ‘flipping’ again.  It would’ve been really hard to be in his brother’s situation— Theodore clearly did everything he possibly could have to make his big bro’s life as good as it could have been, in light of what Vincent was going through.

I’ve managed to learn something from Mr. Van Gogh that is a more subtle lesson, harder to put into simple words.  It has taken me both reading about his life and seeing how his work grew and changed along with his experience to have the sympathetic appreciation I’ve developed for his character.

It doesn’t seem that he had a very happy time overall.  Yet, he managed to turn to his talent to leave behind brilliant and inspirational work that is considered to be some of the most ground-breaking and innovative art ever created.  He had a place to put his pride, and made such important work because he learned first, and then used the tools he had perfected, to cross over into a new way to communicate and convey emotion visually.

He had done his time becoming a ‘master’, and his early work is clearly all about painting exactly what he saw, from the still-life-style bowls of fruit to the very-realistic and literal-looking portraits and pictures of streets and buildings that he learned to represent with almost photographic integrity.  The guy clearly learned how to paint, and paint well, before he took the ‘big steps’ that seemed to move from painting with his eye, to painting from his heart.

His later works broke into what the art-world eventually called impressionism, meaning that it was characterized by being focused on the ‘visual impression of a moment’; capturing a feeling or experience, rather than making a more literal ‘accurate depiction’ of what the artist is looking at as they work.

However it may have been affected by his medical situation, his work seemed to gradually cross over into a more effective emotionally-conveying form.  He had left behind needing to prove his skills, and just let himself paint what he was feeling somehow, and even when what he was representing was a ‘somber’ or ‘humble’ subject, he’s repeatedly been ‘called out’ over time for showing some amount of optimism.

History seems to describe what would be a very lonely and scary set of circumstances for Mr. Van Gogh leading up to the end of his life.  Somehow, what for me has managed to at times ‘miraculously’ improve for some lengthier stretches of time, for him just kept getting worse and worse.  While his brother did everything he could ever have been asked to do for him, his sickness still worsened with more and more episodes of delirium and self-destructive behavior.

Like many situations in history, we can’t be sure that Van Gogh was suffering from epilepsy of whatever kind of form—he may have been dealing with anything that can cause such degradation, and at his time, those who treated him did not have the same definitions to work with that we have now.  Somehow though, it does make sense that he was facing some of the same kinds of issues that I have.

Despite whatever darkness he had faced, Mr. Van Gogh’s life ended in a sad, dramatic, melancholic and somehow yet romanticizable situation, as he somehow managed to turn whatever suffering he’d grappled with into work that is lasting, beautiful, and inspiring.

I was also a lonely artist, for many years, as the prospects were getting worse and worse for me.

Somehow though, everything took a turn… toward the light.

50. sleepniac

Back during that third phase at Stanford I’d been talked to by a sleep disorders specialist.  He had mentioned that in looking at all that data that they had been collecting from my brain it had looked like I might be ‘apneating’ during sleep (which means regularly stopping breathing).  I had agreed to contact the Stanford Sleep Center to discuss having a study done.

In mid-September, Amy brought me back up to the Stanford area to their sleep center for my first study.  Kind of like a number of previous experiences I had had, they stuck little sensor-tabs all over me, including throughout my hair, and recorded me sleeping overnight, this time in a pretty-nice hotel room kind of a setup.

The study revealed that I may be having a problem exhaling fully, which causes a build-up of carbon dioxide in my lungs, which then leads to repeated wakening during sleep.  I scheduled a return visit for a more ‘specific’ study in mid-November.

Well, just like the test before, I had to go sleep overnight with stuff stuck all over me.  The data from both of the studies, plus looking up my nose, had caused the specialists to decide that I had Obstructive Sleep Apnea (OSA).  Apparently, I had maybe broken my nose once or twice doing the swan-dives or whatever while having seizures, and now there was, and probably still is, an obstruction in my nasal airway caused by a buildup of scar tissue.  I guess having it removed is not a simple and workable operation, because sometimes what gets cut out or burned out comes back.

The first test had shown that I had stopped breathing, and then woke up gasping, 43 times in just a few hours’ worth of sleep.  I guess I don’t inhale deeply enough and exhale regularly enough as I sleep, so this could possibly be making my seizures more likely to be triggered.

A sleep-mask (CPAP) machine was prescribed.  It was very high-tech, and it took some adjustment to get it working right.  During the second sleep study, they had tried several types of masks on me and a number of different settings, which they moved around and recorded my response to as I slept, and then the prescription for my particular machine was made.

So, we gave it a try.  Let’s just say, the ends didn’t justify the means for us, at least at that point.  If I really end up having major sleep trouble in the future, I do understand and respect the diagnosis, and we can always try it again.  I did learn that I need to sleep on my side if I can, and that the left side is better than the right due to blockage in my nose.  Also, I’m never supposed to sleep on my stomach (out of concern that I might have a seizure and get smothered in pillows or blankets), so I stick with that advice.

Now that Amy and I have our own home in a neighborhood that’s relatively quiet, I feel like I sleep great.  Of course, having her there with me might just help a teensy-weensy-little bit.

Dr. Graber had already explained that there was a concern that I could end up dying from Sudden Death in Epilepsy (SUDEP), which is when people basically have their final seizure (usually while they sleep), and just plain die. 

I guess one of the main concerns he wanted us to consider is suffocation.  He felt that perhaps having the mask on, with the CPAP forcing air into my lungs at intervals, could help improve the odds of making it through that kind of event. 

Who knows, I may eventually have no choice but to use the machine, but for now I just want to keep on snuggling and cuddling with my lovely wife (without a stormtrooper-gas mask thing that has constant air-flow noise and squeals whenever I move around as air leaks out of it around the edges, waking her up).  So, for at least as long as I can get away with it, I’m going to put that one off, for the both of us. 

At least we are both educated now, and I sleep with her on my left.  Seems to be a working recipe, at least so far.

51. the outside perspective

As I’ve explained repeatedly, my memory can be a pretty foggy place, depending on the whens. 

I’ve had times when I’ve improved and then worsened again, and I definitely have realized over the years that my memory gets more messed up, and stays more messed up, when I’ve had the more severe episodes.  I was told at Stanford that I can expect an ongoing downward trend, with it getting harder to recover and having my memory more and more trashed as I continue to have more seizures.

Well before the studies at Stanford, I’d already come to realize this trend, and had started to take all kinds of steps to keep myself functioning—especially back when I thought I’d be able to keep working.

Gradually I’ve learned to use music as a sort of ‘gauge’ of how well my memory is working.  What I mean by that is, if I want to ‘test myself’ I turn to my ability to recite music and songs to see if I’m able to get all the way through songs without having to stop or without forgetting words and details. 

Well before the Stanford studies, I’d already realized that the older material is, the more likely it will be easier to recite correctly.  I always figured that this was because I’ve repeated it however many more times than newer stuff.  My realization has been that the newer something is, the more likely I am to have completely forgotten it even exists.

One of the conclusions of the Stanford study was that the actual area of my brain that holds the most recent memories has been hit the hardest by damage being caused by the seizures.  It was put to me in this (paraphrased) way: “You’ll always remember your name and how to tie your shoes, but you might forget what you did yesterday or last week”.

And how spot-on that was.

This phenomenon causes a really strange thing to happen—I sometimes can criticize my own work from an outside perspective.  Sometimes I manage to really impress myself later on, but often it works the opposite way as I look at work and go… “what the hell was I thinking?!?”.

When I first noticed how drastically this happens was after that whole 3-day long status epilepticus adventure, when my bro and my friend Mark took care of me, back in 2004.

As I first looked at my music work while recovering from that, I had a real ‘Twilight-Zone” experience.

Apparently, some other person had snuck into my music lab, opened up my music software, and used my instruments to record something called “All My Machines”. 

I was still recovering from a days-on-end round of grand mals, and every part of me still felt like it had been stomped on.  I was making gradual progress and slowly getting moving again, but I needed to open up the music to feel like I had a reason to be alive and all, so I’d put on my headphones and opened up my tool chest and seen this song—for the first time

I’d never heard of it, though it was the most recent in the list as I opened up my work on my computer.  Clearly, it was a file made with a certain, specific template that I had set up for myself to write songs with, and it was bundled in with all the music I had been churning out for the album I was then working on.  It was very advanced, with a number of different instruments already tracked.  The damn thing was really long, like fifteen minutes or something.

When I hit play, I heard the work that ‘Mr. Hyde’ had done while I was out.

I found a file with lyrics for it next.  As I listened, I was astounded, and as I read the words, I was further enchanted.  There was a lot of work in front of me that at some point somebody really must have cared about, or they would not have invested so much time and effort.  The lyrics were full of entendre and irony in reflections about the relationships people make with machines, and weighing the possibility that machines may already be ‘alive’ and able to communicate with each other.

I related to this work from a strange distance.  I know my style, and apparently ‘Mr. Hyde’ did as well.

As I listened, I realized that some of the music didn’t appeal to me.  There were times when some intense things had been done, apparently just to see if they could be pulled off, but somehow, they’d strayed too far from the groove and lost me, the listener. 

As I watched the music move by on the screen I could see that in a number of these places in the music, many hours had been spent making parts for whatever number of instruments, but I was very detached from the work in front of me because I did not do it.  Therefore, I did not care so much about invested (and/or wasted) time and effort.  I ‘got out the scissors’ and did away with more than half of the length of the piece, reducing it from some kind of ‘super-epic album-side’ into something more like just a plenty-good-long song. 

Thing was, I didn’t have to cry over how hard or long I had worked on this thing, because I was as detached from it as a commercial producer would be with any stranger’s work that they had been contracted to improve.  I could judge it completely from outside, which I did.

Over time this was not the only experience I had with ‘uncovering’ work of my own.  I began at some point trying to make it easier on my ‘later-self’ by leaving more notes and clues to help me put things back together, mostly trying to help myself find the thought-trains I was on while writing and recording, so that I’d be able to make some kind of coherent progress. 

I didn’t always get so detached from my recent goings-on after seizures, but it happened often enough that I’d begun to make setting up my own ‘safety-nets’ part of my routine.  This way I could find as many dropped marbles as quickly as possible when I’d wake up and find them spilled and scattered again, so I could drop them back into an ear and they’d find each other and line back up well enough that I could get back to work.

Over time, I’ve set up many little ‘carrots’ for myself, and it seems like even though I’ve tried harder than ever since the surgery to find them all, I still come across them from time to time; scattered little tidbits like song titles and scraps of paper with addresses of lost friends and musicians and recipes and lists of things not to forget that ended up themselves being lost and forgotten until whatever new ‘now’, when I’ve somehow sifted through whatever dust pile to find them again. 

It’s my history, but repeatedly putting it all together feels like some kind of personal archeology.

At some point I know I had faced the reality that I’d probably not be getting ‘all-better’ and I just tried to quit getting pissed at myself for forgetting, and I’m pretty sure that acceptance probably enabled laziness in a downward spiral that makes the dust now seem to be the thickest over the most recent times, when it should be deepest over the farther-back times. 

When I’ve had a few stretches where I’ve been fortunate enough not to have flipped out for a good long time, I’ve realized that often my memories from childhood are clearer and easier to pull up into view than memories of the last five or ten years.  This creates another twist of feeling that is hard to know unless you’ve ‘been there’ to feel it; like I’m some kind of investigator on the trail of me a few years back; this other guy, who I am always uncovering, judging, and trying to forgive.

It’s not always easy to forgive him. 

Clearly, he was a fool, his medical bullshit aside.  He was a romantic, who always wanted to be seen as some kind of uncompromising purveyor of optimism, just trying to get the music coming from the radio inside his head out into the world. 

He did not act like he expected to live very long, and he behaved like somebody who truly believed any day could be his last, and all consequence would be irrelevant.  He had something to prove to the world, because out of his romanticism he felt like he, like everybody, had been put here for some reason

I remember that ‘something to prove’ part.   It probably goes back to having been a fat kid or something.

Sometimes though, I can’t help it–he pisses me off.  As I dig and brush away the dust and sift through it, I uncover the fragments of what could-should-might-hopefully-have-been-if-only-not-so-mismanaged-by that bumbling fuck. 

Since the Stanford studies and procedures, one example has put it harder into my face than any other, and I’ve had to mill and mull and figure out how and what I’m going to do about it real hard.  That example is what I had called my then-most-recent album, Next Times.

Right after surgery I realized my instrument skills were not doing well.  I could hardly get through a song on the guitar or piano without stopping and scratching my chin and forgetting what the hell I was just doing.  I knew I was not up to my former level of music skills, and the more I tried to play the more I started to realize just how much I was missing the ‘chops’ and skills I had worked on for so much of my life.  Because of this, picking up an instrument usually caused me to get annoyed with myself pretty quickly and put it back down. 

I knew that if I dwelt too long about my lost skills, I might do something darker and unhealthier than the healing that I needed to be focusing on.  I’d likely begin to obsess with self-criticism that could cause me to start losing sleep, eating lousy, and basically taking poorer care of myself–pointing me down the ‘dark path’ I was told to expect when it was explained to me that the surgery unfortunately had not been able to be made a success and that I should expect more seizures that would probably get worse over time, causing more and more damage… the dark path.

Besides, I had plenty else to deal with from the moment I left Stanford, so music would just have to wait.  Survival comes first, and, unfortunately, music did not equal survival for me.  Not only that, but now I had to always think of this other person who had somehow found her way into my heart.

Sources Cited:

 

Albums:

Bennett, N. (2012). Next Times [CD]. quilted fish records.

Bennett, N., and Beutler, T. (2014). Cloning Drones [online/free album].

 

Famous & Historical Figures (described as having had seizures):

     Alexander the Great

Hughes J (2004). “Alexander of Macedon, the greatest warrior of all times: did he have seizures?”. Epilepsy & Behavior. 5 (5): 765–7. doi:10.1016/j.yebeh.2004.06.002PMID 15380132

 

     Caesar, Julius

Magiorkinis E, Sidiropoulou K, Diamantis A (January 2010). “Hallmarks in the history of epilepsy: epilepsy in antiquity”. Epilepsy & Behavior. 17 (1): 103–8. doi:10.1016/j.yebeh.2009.10.023PMID 19963440. 

 

     Carrol, Lewis

Hughes JR (2005). “Did all those famous people really have epilepsy?”. Epilepsy & Behavior. 6 (2): 115–39. doi:10.1016/j.yebeh.2004.11.011PMID 15710295

 

     Dostoevsky, Fyodor

 “Fyodor Dostoevsky”. Charge – The experience of Epilepsy. Retrieved 2 February 2006.

 

Hughes JR (2005). “The idiosyncratic aspects of the epilepsy of Fyodor Dostoevsky”. Epilepsy & Behavior. 7 (3): 531–8. doi:10.1016/j.yebeh.2005.07.021PMID 16194626.

 

     Handel

Hughes JR (2005). “Did all those famous people really have epilepsy?”. Epilepsy & Behavior. 6 (2): 115–39. doi:10.1016/j.yebeh.2004.11.011PMID 15710295

 

     Joan of Arc

Hughes JR (2005). “Did all those famous people really have epilepsy?”. Epilepsy & Behavior. 6 (2): 115–39. doi:10.1016/j.yebeh.2004.11.011PMID 15710295

 

Foote-Smith E, Bayne L (1991). “Joan of Arc”. Epilepsia. 32 (6): 810–5. doi:10.1111/j.1528-1157.1991.tb05537.xPMID 1743152.

 

d’Orsi G, Tinuper P (2006). “”I heard voices…”: from semiology, a historical review, and a new hypothesis on the presumed epilepsy of Joan of Arc”. Epilepsy & Behavior. 9 (1): 152–7. doi:10.1016/j.yebeh.2006.04.020PMID 16750938

 

     Lenin, Vladimir

Lerner V, Finkelstein Y, Witztum E (2004). “The enigma of Lenin’s (1870–1924) malady”. Eur J Neurol. 11 (6): 371–6. doi:10.1111/j.1468-1331.2004.00839.xPMID 15171732.

 

     Muhammad

Frank R. Freemon, A Differential Diagnosis of the Inspirational Spells of Muhammad the Prophet of Islam, Journal of Epilepsia, 17:4 23–427, 1976

 

     Napoleon

Osler W (1903). “On the so-called Stokes-Adams disease (slow pulse with syncopal attacks, &c.)”. The Lancet. 2 (4173): 516–524. doi:10.1016/S0140-6736(00)66180-9.

 

Hughes J (2003). “Emperor Napoleon Bonaparte: did he have seizures? Psychogenic or epileptic or both?”. Epilepsy Behav. 4 (6): 793–6. doi:10.1016/j.yebeh.2003.09.005PMID 14698723.

 

     Newton, Isaac

Hughes JR (2005). “Did all those famous people really have epilepsy?”. Epilepsy & Behavior. 6 (2): 115–39. doi:10.1016/j.yebeh.2004.11.011PMID 1571029

 

Jeste D, Harless K, Palmer B (2000). “Chronic late-onset schizophrenia-like psychosis that remitted: revisiting Newton’s psychosis?”. Am J Psychiatry. 157 (3): 444–9. doi:10.1176/appi.ajp.157.3.444PMID 10698822

 

     Poe, Edgar Allen

Hughes JR (2005). “Did all those famous people really have epilepsy?”. Epilepsy & Behavior. 6 (2): 115–39. doi:10.1016/j.yebeh.2004.11.011PMID 15710295

 

Bazil C (1999). “Seizures in the life and works of Edgar Allan Poe”. Archives of Neurology. 56 (6): 740–3. doi:10.1001/archneur.56.6.740PMID 10369317

 

     Socrates

Muramoto O, Englert W (2006). “Socrates and temporal lobe epilepsy: a pathographic diagnosis 2,400 years later”. Epilepsia. 47 (3): 652–4. doi:10.1111/j.1528-1167.2006.00481.x

 

     Tchaikovsky

Hughes JR (2005). “Did all those famous people really have epilepsy?”. Epilepsy & Behavior. 6 (2): 115–39. doi:10.1016/j.yebeh.2004.11.011PMID 15710295

 

     Tubman, Harriet

Larson, Kate Clifford (2004). Bound For the Promised Land: Harriet Tubman, Portrait of an American Hero. New York: Ballantine Books.

 

     Van Gogh

Blumer D (2002). “The illness of Vincent van Gogh”. The American Journal of Psychiatry. 159 (4): 519–26. doi:10.1176/appi.ajp.159.4.519PMID 11925286

 

Hughes J (2005). “A reappraisal of the possible seizures of Vincent van Gogh”. Epilepsy & Behavior. 6 (4): 504–10. doi:10.1016/j.yebeh.2005.02.014PMID 15907745

 

     Young, Neil

Young, Scott (30 July 1997). “Chapter 8: Buffalo Springfield and Epilepsy”. Neil and Me. Music Sales Distributed. p. 68. ISBN 978-0-9529540-2-6.