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CHEFILEPTIC
by Nate Bennett
EPISODE 12
Hello, good people. I’m Nate Bennett. This is the twelfth episode of Chefileptic, my autobiographical podcast series.
This time around: the results (and what resulted from) my very ‘in-depth’ brain study, the happiest day of my life, fighting through sleep, and what it’s like to see your own work—as someone else might.
If upon consumption you’ve found this episode to have been worthy of the time you spent with it, or/and if it makes you think of someone else who also may, make sure to guide them to it! While it’s absolutely free, without your help, they’ll never hear or see (it).
46. bad news, good news
Mom and Emily were present when Dr. Graber came in to break me the news after the data had been analyzed and discussed. I remember we all said ‘hi’ briefly and then he asked if I wanted to hear it in private, and I guess I was so used to our frank relationship that I didn’t think about if it might be hard for Mom and Em to get the details, but they got them right along with me.
He explained that, as feared, my seizures originate from the area of the brain that would be ‘too deep’ to operate on without causing extensive risk of strokes, as well as having a strong possibility of damage to my IQ and general brain-function. I was no longer a candidate for the whole big surgery-and-cyborg thing.
He reminded me that we knew this was like a 30% likely outcome. I could now expect the seizures to continue, and they’d probably get worse and become more damaging, as we’d discussed was a possibility before. Also, once we pulled out all the mapping stuff, I would probably not be able to be operated on again, as the concern was that my skull would not be able to deal with another surgery.
It was floated that the device might help me, but we just couldn’t know—it apparently might have had about a “two out of five” chance of making a difference. I felt like some of my Stanford team might have wanted me to “go for it”, since we were there with my head already opened and all… I was tempted to give it a try, but I had already set in my mind that if I heard odds that were less than 50/50 I’d turn down any offers to ‘proceed at my own risk’.
As polite as I could be about it, I was more or less like “get me out of here”.
I was glad, as I always had been in our doctor/patient relationship, that I was feeling like I was getting frank news and hearing exactly what the deal was spelled out nice and clear. Always a plus.
And as far as the news itself went, well, I was alright with it, really. It’s not like I always was hoping to lose part of my brain and have a robot-shocker installed, it’s just that I was willing to, if it would make the seizures stop. Now I could figure out what it was I had left to work with, and go forward from there.
After the doctor gave us the news, he gave us our privacy to soak it up. I tried to make sure that Mom and Emily knew, seriously, this was alright, probably even somehow better and simpler than the outcome we had been shooting for. I tried. Then I felt selfish for having the doctor speak directly to me without insisting that they had left the room first. I just wanted them to know what I knew, but maybe I could have ‘broke it to them’ a little more gently. I know that they know I didn’t mean to cause them hurt.
When we got the news that the surgery wasn’t going to happen, I had some empathy for all these doctors who had formed this big plan and selected me as a candidate and worked hard together to carry it out. This part of their jobs must suck. I was really hoping to be a success story for them, just like I’d still like to be a success story for quilted fish records, even today. I also now had my love Amy to think about at every step, and I was hoping to have good news for her too, and this sure wasn’t it.
As the rest of my third phase droned on, I gradually consulted with my team of specialists about the prospects and realities, and they were all pretty clear with me that I should not consider working any longer, as doing so would increase my risks and also cause risks to anyone else that I might share a workspace with.
Yup, I had heard that one somewhere already.
Dr. Graber told me that even self-employment should not be considered as it would not be a ‘stable’ source of income, because I had a history of such extensive and numerous seizures and associated memory issues that had led up to this whole process at Stanford. He explained that I have a ‘very rare and dangerous’ form of epilepsy because I not only have very violent (though sometimes irregular) episodes, but because I had this ‘post-ictal’ thing, when I tended to wander and sometimes react violently to others that may be trying to help me. He said that he’d support any of the needed documentation required by all of the procedures that would be part of my application for disability income, and would support me for all of the hearings and junk that would be required for me to become a ‘permanently disabled’ individual.
He had my back, and my case was legit. Hooray.
I was given similar prospects by Dr. Parvizi, and though I was very displeased to hear this news from my great team of doctors at Stanford, it was all right in line with a statement I had heard recently from my regular neurologist Dr. Bhattacharya. I couldn’t work alone, or with others.
Dr. Graber asked me if I had ever tried using a drug called ‘Keppra’ (generic name Levetiracetam). I told him that I had not, and he then added it to my daily med regimen. At first, it caused heavy side-effects (mostly double-vision and dizziness), though after a week or two I eventually adjusted to it, like I had with all the others.
By the time all three phases had been completed, I had spent something like six weeks total in beds at Stanford. What can I say, the food was pretty good, though in spite of that I had lost twenty pounds since I had checked in for the third phase, dropping from 180lbs to 160lbs in a little over two weeks.
And the people at Stanford had all been pretty darn nice, too. At least from what I can remember, which usually means nobody was a mega-jerk, at least. All of the doctors that were part of the first surgery had dropped by my room to check on me a number of times during my stay, and I felt like even though they were all clearly busy and the mix of faces was always shifting, they were overall a great team of caring folks that really were on my side.
And if this team was telling me I could not work, I could no longer work, and I couldn’t pretend that I could. I had to respect their perspectives from an ethical standpoint, and I knew it. They all knew enough about my condition to know that there was really no way to predict what could happen and what harm could come from out of my trying to work. Nobody in that crew wanted to put their name on my back-to-work letter, and I couldn’t blame any of them one bit.
This was a critical validation for me. These were the people who really knew what was going on, and understood what I’d been dealing with.
Sadly, it didn’t turn out that their support could really help me with my Social Security claim, but it was nice to know they all ‘had my back’, at least in spirit.
That’s the thing about doctors. They do care, and they can use their knowledge to help make us better, but sometimes they have all this shitty red tape and paper to swim through just to get to the part where they can actually physically help us. Sometimes, their hands are tied when it comes to how their patients are going to make it in this world after they’ve done all they can for us, and that’s got to be a frustrating part of careers in modern-day medicine.
Somewhere along the timeline, I realized why what had gone down back in ‘99 in that first trip I had taken to the Dominican Hospital emergency room had happened the way it did. At first, I had thought of myself as the victim, the ‘hot-potato’ that doctors agreed to pitch out the door once they knew I didn’t have insurance, because they were all part of a giant evil machine and all they cared about was getting money out of me, and once they found out I wasn’t ‘covered’ I was tossed into the ‘other’ pile.
Over time, though, I saw a bigger picture, and I developed empathy and understanding for the doctors that were handling me, as they realized I was uninsured. They were trying to do what was best for their patient, bottom line. They knew that they wouldn’t be able to ‘fix me’ with any tests or treatments within their reach, but they did know I’d be paying full price for whatever they did do to me. They all knew I’d need one or more specialists, and that I’d need any number of tests like those MRI’s and EEG’s and all that–and they knew that if I stuck around the ER, I’d be paying for those tests until I was a financially dried up raisin. They didn’t “get me out of there” out of their own selfishness or because they were just slaves under the control of giant money-driven mechanisms. They were doctors sworn to do their best for me, their patient, and they were trying to help me out by “getting me out of there” asap so I wouldn’t be destroyed financially, which could lead me down the path of compromised treatment.
Any blame I had for them as individuals was a selfish and immature reflex-reaction on my end. Like so many systems I would yet be learning to deal with, no individual person is the sole designer or creator of the complex frameworks that we all have to work within.
47. the grand exit
As Phase 3 was wrapping up, I was told I could expect to have a seizure after the anesthesia wore off from the button-up surgery. And it did, sure enough.
I went into surgery on the evening on Wednesday June 19th so the mapping apparatus could be removed. I was no longer one with the machine.
In the early morning hours of Thursday, the 20th, I woke up in the recovery room, lifted my arms and realized that they were no longer restrained. It was the first time in many days I could raise them. I got a nurse’s attention and we talked for a sec, and I told her my arms weren’t tied. She had taken a look at the sheet or whatever, and said that she thought they no longer needed to be, and she checked again and said that I was all clear–no longer attached to stuff that I might pull out of my brain.
I remember looking around and seeing carts, and stands, and machinery and computer monitors with little blip blips going on and the all the kind of stuff I would expect to see, but realizing I could reach pretty much tons of expensive stuff and throw it on the floor if I wanted to. I told the nurse I thought she should tie me up.
She then got the resident doctor to come over and see me and we talked for a sec and we then basically did the same dance. I was kind of surprised that the doctor wasn’t like, ‘oh yeah, tie this guy up right away’ but she wasn’t concerned and explained that I was all buttoned up now, and wasn’t expected to be a problem from there on out. However, she agreed that I could be tied up if it would basically make me feel better about the situation. I told her that it would.
So, they tied me up, and after the doctor had left one of the nurses told another that I was “one of the good ones”. Apparently, I had a good reputation going on around the shop.
Sure enough, I went off twenty minutes later. My journal states that the convulsions lasted approximately three minutes, followed by a ‘post-ictal’ state lasting approximately ten minutes. Good thing I was tied up after all.
I did pretty well for a while after I left Stanford seizure-wise. Actually, really well.
I have to admit that I tried not to let myself think it could be ‘over’ or ‘less severe’, but naturally I could hardly help myself. The difference was notable, and I had just hoped it’d last.
It was about 10 months later when I finally had my first consciousness-interrupting episode. That was a notable break for me for sure, but it clearly meant this thing wasn’t over.
Since then, I’ve had somewhat less frequent seizures, but a few have been pretty severe. I’m sure the medication that was added at Stanford had something to do with it.
48. the afterphase
About ten days after Phase 3 was over, I headed back to Stanford to get ten staples and thirty-five stitches pulled out of my gourd.
Apparently, I had recovered well, in spite of the weight loss and although I did have some ‘edema’ going on after the surgery. Apparently that’s a ‘normal thing’ and it happens often after all kinds of surgeries–but for whatever reason my left leg swelled up to be like twice the size of my right leg and l limped on it for about a week before it finally acted right.
The scar from the surgery runs from a couple inches up from my ear on my left temple and in a big u shape up into my hair back down and around to above and behind my left ear. My hair now covers it almost completely. Part of it can be seen on the temple if you’re looking for it, but I don’t make little kids cry when they look at me now or anything.
At one point it was sounding like they were going to take off the whole ‘lid’ of my skull; I guess that makes a pretty ugly ‘Frankenstein scar’ right under the hairline across the whole forehead. Whatever. I was ready to get a piece cut out at one point, so the scar that the process would cause was less on my mind than the future of my mind itself, if you know what I mean.
Well, as I left the hospital, I got right back on all those medications. And as I was doing that, I was also preparing to move out of my too-large-and-expensive Santa Cruz house. I had called the landlady when I first got back from Stanford; I knew then that I wasn’t going to be allowed to go back to work so I had to get out of there as soon as I could. We then had a month-to-month lease, and whether I liked it or not, I had to get ready to get broke from the looks of things. So, step one was to move.
Mom and Emily headed back to Albuquerque after I got home from Phase 3. They’d already stayed longer than they had planned, and I really needed to focus on figuring out what I was going to keep, packing it up, and moving on out of that house.
That’s what I was doing when I had the next spell, two days after the staples had come out. I was listening to some Hall and Oates on the stereo as that feeling came on, and I just laid down on my back on the carpet and got that magic wallet into place and let myself relax and focus on the music. The spell faded away, and I could tell I hadn’t ‘skipped’ any of the song. I had stayed in the here-and-now.
Several months later on October 19th I had a similar spell at about 10pm. I felt it start up, warned Amy, and laid down with the wallet in place. It was over within three minutes.
That recovery time was weird. I mean, I can only imagine how much weirder it might have been if I had awoken to part of my brain missing and having a robot shock me every now and then.
One difference was that I had the additional new meds to get used to. Because of the double-vision problem I had at first, I had to shut one eye regularly to get around, and sometimes when I went to pick up something I’d sort of come up short or even miss what I was reaching for.
I had a weight restriction of something like five or ten pounds or less for a short time after I got home. I remember that I sort of laughed when I first heard it, but damn. Sure thing, it was hard to do any lifting and reaching at all. It didn’t take me long to realize that I’d be stuck at home for a while and would be moving slow and easy, whether I liked it or not.
I ended up being kind of glad that Mom and Em had to leave pretty quickly after I had gotten home from Stanford. Plenty hadn’t gone entirely according to our original plan, but they were there for me at the right time, and I was a little relieved that they wouldn’t be around for too long to see me bumbling and embarrassing myself.
I didn’t know yet what all I had lost or how I would change, and I needed some time to assess the damages.
I had to get better quick, so I could clean up and pack up. I already owned a fairly small amount of stuff from all of my previous moving around the Santa Cruz area so much, but I had learned never to underestimate the amount of effort any move is going to take. Moving ten times in the twenty years I lived there had at least taught me that much.
This time, I was going to be healing up however quick from a brain surgery that I was told did not work and could not happen as I got ready to deal with more seizures while beginning the insane procedures that would go along with proving to my employer and the federal government that I, am, in fact, disabled. All these doctors that had come to work on my case had told me so, and I had to believe them. It was both a matter of preparing myself to deal with how I was going to make an income, as well as facing the dark prospects of worsening health.
Well, I did expect some damage fallout when I went into the whole thing. What can I say, I was so ready to make the seizures stop, I’d have let them cut out whatever parts they’d told me had to go. Now, though, I was on the recovery side, and on some new meds that had some side effects and all, but damn my memory had taken a hit. I had a good fix on what was going on ‘in the moment’, but I had lost a good amount of what had gone on in the recent past.
I noticed my memory damage right away when I tried to play some music. Worse than ever, I couldn’t limp through hardly any song, including my own, no matter how simple. My coordination was lousy and so was my ability to remember lyrics. On top of that, I was often scared and frustrated during that whole time, so turning to music for comfort was not helping me face these feelings, it was making them worsen.
I had played music almost every day since I was a kid, and now I didn’t want anyone to see how I fumbled and stopped and tried again, sitting in my soon-to-be-deconstructed home studio filled with all these instruments and music machines with wires running everywhere for no reason.
As I tried over and over to play, I came to realize that the ‘older’ any music was in my head—the younger I was when I had first learned it—the more likely I was to be able to play it. I found myself starting by trying to play all kinds of songs I had learned way back when I was a kid; now it wasn’t about what I would be performing or recording in my own future music career, it was about learning how to ride the bicycle all over again.
That was a long hard process, and really, it’s still ongoing.
Well, in spite of having all these ghosts hanging over me to tempt me into being scared or mad all the time, somehow, now I had my Amy.
Now we were talking about the possibilities, and trying to proceed like I was going to keep on living and the medical-procedure stuff was done, at least for now. We knew what we would be working with, and we had to figure some shit out—like, fast.
When we looked at all the options, it became obvious pretty quickly that the wisest move was for me to (at least temporarily) cram into Amy’s house down by the Santa Cruz Boardwalk, a few miles away. The house I was in was really too expensive, even for both of us, plus we’d have Amy’s “dog-der” Wheezie, which wasn’t going to work out. We shopped the market a little, but it wasn’t long before we realized she just plain had a lower rent scenario at the house she had lived in for many years, so we rented a moving truck and got it over with.
Whew. Forty days after brain surgery, I was now living in a whole different scene.
Down there by the beach was different than any of the other places I’d lived in the area. I’d started off in the mountains, with its windy two-lane roads, steep geography and more drastic weather changes, and then lived down in and around Santa Cruz, which basically has less extreme everything. Over the years I’d bounced back and forth between those somewhat different settings, but I had never yet lived right by the beach.
Now, I was in this house on the flat land along the San Lorenzo river right where it spills into the Monterey Bay. We were a couple blocks from the Wharf and right near the Boardwalk, which is everything you’d imagine—antique beautiful eccentricity working alongside various gimmicks and themes designed to milk the bucks out of all the tourists that cram in to enjoy those beautiful summer days of Santa Cruz.
Mornings, when the Boardwalk would open, the sound of the kids screaming on the roller coaster quickly became to me what a rooster is to a farm. I got used to it pretty quickly, along with the crammed and crawling traffic that would build up every day as the parking lot across from the house would fill, and later empty in its daily cycle.
When the place was ‘shut off’ (meaning the Boardwalk wasn’t open), I could hear the waves and the ‘ork-ork-ork’ of the sea-lions that’d usually collect around the wharf. The air would often be cool, foggy and hazy, giving the whole feel down there a totally different atmosphere than any of the places I’d lived since I’d moved to California.
I ended up living in that area for twenty years, and Amy was there for seventeen. While I’d had to move numerous times, Amy had stayed in the same house where she first visited a friend and crashed on a couch. I couldn’t imagine that—to me, the area represented shifting ground which could not be trusted, and to her it was a home.
Now, Amy would be my home. It was so hard to let myself believe.
49. my Wife
Amy and me… what can I say, we are so similar in so many ways. We’re both dreamers at heart that think stuff must mean stuff and stuff.
So, as we’d realized more and more how crazy it was that we had both moved to Santa Cruz from the same faraway place 2,300 miles from there, and we had (years before) both been at the same concerts at least seven times, and we were both Capricorns with birthdays a few days apart and on and on… we’d considered the possibility of maybe getting married exactly a year after our anniversary.
We realized though, that it really wasn’t practical to get married on New Year’s Eve.
Not just that, but even though we weren’t talking about it that much, the surgery officially didn’t work, and I had no idea how I’d be making a living other than doing what people do when they become disabled and filling out paperwork and waiting around and then filling out more.
Well, since the Stanford studies had ended, I wasn’t having as many seizures. Now, I didn’t want to take that too seriously, because I had heard from the beginning that often patients who have any number of things done to their brain will get relief from seizures for maybe up to six or eight weeks. I’d heard my doctors refer to this as the “honeymoon” period. So, naturally, I was getting ready for the big let-down when the end of this period would likely happen, when I would wake up somewhere, however beat up, and hear what all had happened, and realize I was back in the old boat again.
Thing was, for a while that wasn’t happening, and it had gotten to be a couple of months.
I had wanted then, and still so much want to this day, to give my love a wonderful wedding. Just like I wanted to give her a ring. We had already agreed to basically tough it out there in California just until we got the disability stuff figured out, and then we’d probably pack up and head on back to Michigan. So, we were going back and forth over our hows-and-whens but we had our end-game plan made.
First of all, we were hoping to have a West Coast wedding, and invite all of our friends to a nice bar-b-que or something, and then to have a Michigan wedding, where we would invite most our relatives and deep-roots friends for something similar, maybe a little fancier, where she could wear her mom’s wedding dress for a ceremony.
Thing was, we naturally didn’t exactly have any logical reason to expect good financial prospects at that point. In fact, we knew I’d be back to fighting the fight of proving that I’m actually disabled to machines that I dreaded even thinking about.
At some point I had a conversation with Zoltan. He made a few good points for sure, and suggested that it might work out best, since we knew we were going to get married, if we just tied the knot ‘officially’ at the ol’ courthouse and then maybe had ceremony and reception fun a little later on.
Amy and I talked it over. We both already knew we were not even considering not getting married to each other. I mean, come on, there was nobody better for either of us, and we really were sure of it. And for a number of reasons (not just including whatever disability-paperwork storm was approaching), it did make sense for us to marry as soon as we could, and to do our partying and honeymooning when the dust settled–hopefully not too far in the future.
So, we ran a few errands and got our documents and certificates working and set up a nice little ceremony at the Santa Cruz County Courthouse, right along that same sweet San Lorenzo River. Two of our friends from work, Jeanne and Rose, came to see us make our vows. We stood together in a circle of redwood trees, and promised ourselves to each other, forever. And kissed. It was the happiest day I’d ever had, September 2nd, 2014.
Seems now like we’ve always been together—I guess that’s why I’m so sure that it was meant to be.
I still want to walk her down that flower-decorated isle and put a shiny ring on her and kiss her again and get all of the attention of our family and friends for the moment and then cram cake in her face and all that stuff… I’m hoping I might still be able to make that happen someday.
So many times since then I haven’t been able to help but trip about how we’re just going to make it by at all, but I still want to make that happen somehow. She’s that special. We’re that special.
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:
Daryl Hall & John Oates. (2001). Very Best of Hall & Oates [CD]. RCA Records.
Stevenson, R. L. (1886). Strange Case of Dr. Jekyll and Mr. Hyde. Longmans, Green & Co.