CHEFILEPTIC

56. the biggest win

For Amy and I, summer of 2015 was happy, sunny, hopeful, and sure—with a looming dark and foreboding cloud of near-future hovering just out of sight over the horizon.

We were both sure we had found the right love.  We were sure we were going to keep fighting whatever battles we’d have to fight, together.  We were going to take care of each other, no matter what.  And we were going to face our future with Wheezie, who gradually had realized that she was not just Amy’s dog, but was now our dog—Wheezie Bah Bennett.

We didn’t know how we would stay afloat, but we both knew enough about my medical drama to know we could not expect me to return to work, at least not in kitchens, anyways.

We had done all kinds of hoop-jumping and waiting and stewing as I’d dug in again with Social Security, not knowing if I’d eventually win my case and be awarded a pathetically small amount of income, or if I’d have to find some way to ‘self-employ’, so that I wouldn’t have to ‘fire myself’ if you-know-what happened.

And that was part of the tension behind the smile of that season.  I hadn’t had a large seizure for almost a year, and as of June that summer it would be a full year.

That had brought both relief, and worry.

We were both so glad I wasn’t flipping out, yet we had no reason to expect it wouldn’t happen again, and possibly at any moment.  I hadn’t actually gotten the ‘robot-shocker’ installed in my brain, I’d just gone through a number of procedures to bring me to the brink of doing so.  I’d been cut open and wired up and this had provided my Stanford team with all kinds of data (enough to decide not to do what we were hoping to do), then I’d gotten zipped up and was out of there.  Instead of taking two kinds of medicine every day I was now taking three, but no ‘bad spot’ had been carved out of my brain, and I wasn’t a ‘cutting-edge cyborg’. 

It didn’t feel like my recent good fortune could be taken for granted, that’s for sure.

I’d heard, several times from several doctors along the way, that often people who have seizures and get some amount of brain surgery get a ‘honeymoon period’ as they recover.  For a short time, they often have reduced, or even zero seizure activity.  This phenomenon was acknowledged by the world of medicine, but was not understood.  Knowing that made me feel all the more like I could still be on thin ice, and might again fall through it, even as the length of time I’d enjoyed without seizures was growing.

I wanted to celebrate, and tell the world I was, for whatever unknown reasons, all better now.  I wanted to share this info, along with all the data that was collected about my case, with the world of medicine so that doctors might be able to figure out how and what they had ‘done right’ and may be able to use it to help others.

And I wanted to share my new life with Amy, without her having to take care of me like Bryan and Wendy and numerous bandmates and EMTs and ER doctors had done so many times over the years.  I couldn’t help it–I wanted to be that miracle, and as the length of time without seizures kept growing longer, I couldn’t help but hope it just maybe might last forever.

This, however, would not have been what we were told to expect as we left Stanford.  I had been told to expect the seizures to return, and worsen, and cause more and more damage.  I had much respect for all the doctors that had cared for me along the way, so I could not help but assume that eventually, they’d be correct.

And then there was the whole SS thing.

Being well for a longer and longer stretch was sure to ‘hurt’ my case, because the ‘grid’ that would be applied to me would rule me out as a ‘truly disabled’ person.  Even though I was now waiting for my case to be heard by a real, live judge that might be able to ‘flex’ the rule-book for me, my good health was sure to make that less and less likely.

Of course, even then I still did not want to be disabled.  I wanted to be able to work, to do my part to earn and financially support our marriage, and even to be able to take care of my wife, like a normal, loving husband would, even if some day and I was the only income-earner.  I’d figured out what tiny amount I’d be paid by SS if I did ‘win’ my case—and believe me, I’d rather have been able to earn minimum wage, so I was fighting a fight that I didn’t really want to win, deep-down.  But I had to keep that fire lit, keeping my case ‘active’, just in case—and we were now waiting for the ‘next round’, once again.

Deep down inside my partially burned-up and somewhat dysfunctional brain, I was still hoping, as I had for many years, that somehow something original that I’d created would become worth something someday and might even yet be the answer to my earning-quandary.  I’d known for a long time though, that this was a very unlikely outcome and that my chances of ever making a ‘big hit song’ or a ‘gold record’ was probably even more unlikely than my chances of never having another seizure.

The logic side of me still could not ‘snuff out’ the dreamer side, though, and I began to realize that I wanted to tell my story.  It was, after all, unique—although it would likely appeal only to a very limited audience if it ever got read or heard at all.

I remember that I kept thinking back to my earlier self—the one that had first awoken in the emergency room hearing he’d had a seizure… the one who had first had his license taken away… the one who was first told he couldn’t work anymore… and I thought of how handy it would have been if only I could have heard my own story way back then.  I’d know what to expect, how it is to be stuck between systems, how it is to be told on one hand by the world of medicine that you can ‘never work again’ while being told by ‘the system’ that “you don’t appear to be legitimately disabled”.

And I remember that I had arrived at a thought—that maybe my story would only reach one person if I ever wrote it out, and that person might be the one person, who, like I was, is going “what the hell am I going to do now?!” as they found themselves in a situation like what I’d made it through.

So, maybe my story would never bring me a buck, but it still seemed to make sense to try to share it, because if it existed it might find that one person, but if I never did write it out, it surely never would.

I’d put together a semi-functional temporary ‘office’ in that house by the Boardwalk, and set up my computer and printer so I could handle business.  I’d also set up a little mini-mixing station and put together that project from what I’d recorded with Tim Beutler when he’d visited me.

I couldn’t earn, but I could still read and type.  With my smoldering work-ethic pushing me to do something, I dug in.

I knew that if I made it to June 20^th of that summer, I’d have been free of major seizures for a full year.  I decided to make that a deadline, and got into a binge of working on my new writing project.

In my head, my story was (and believe me, still is) as torn up and fragmented as I could have ever imagined.  Much of the work I had to do was like telling someone else’s story—a guy who had died off and left behind piles of medical records and old emails and chats.  A guy who had a bunch of songs on his computer, some finished but most not, that showed dates when they were last opened and saved.

But this guy was also loved by a handful of patient and caring friends and family, who would help him as he did his research; his Bro and his friends and bandmates were all willing to talk and chat and help him with his effort because they, too, realized that his story was worth writing down–even if only to keep him busy with yet another project for a while.

So, I started a new binge in a medium I hadn’t worked in before.  It was really hard to make it cohesive, regardless how hard I kept pouring over it to make sure I’d gotten at least most of the history right.  I had to keep re-reading and combing through and pouring over even what I had just typed, and I felt more like I was putting together a museum of different displays about different subjects from my past, rather than working along a simple timeline.  I finally decided to just let myself work that way, and to make the order that things had actually happened a lesser priority.

My thought trains weren’t always complete and linear, and I often didn’t have a ‘real memory’ handy when I’d go to reach for it.  Poking through all my stacked-up materials really brought back a bunch of memories, like I had hoped it would, but it also left some out of reach.  I knew that these things had happened, and I could prove that they had, but I had to double-check on how many events actually went down with those who were there when they did (and had normal, working brains) to make sure I got the details right.

And now, I can’t be sure that all of them are, but I figure that as a whole, it’s at least worthy of a ‘non-fiction’ designation.

This process set me up to spell out one of the big ‘take-aways’ that I’d want to leave a reader or listener with, especially anyone that has ever had any amount of memory issues.

So here goes: unless of course you are a criminal, cheater, or a spy, NEVER THROW AWAY OLD EMAIL OR CHAT STUFF.  At this point it doesn’t cost you much (if anything) to keep it, and you never know when you might be living during a time that you will forget later.  When you can open up a ‘search’ and scrub through your old day-to-day crap, it really helps when you can figure out who you talked to about what and when. 

I have even gotten into the habit of writing and sending emails to myself, so that later on they will be there as a ‘back-up’ for my ‘challenged’ memory if needed.  It’s come in handy many times, even if email is considered ‘old’ or ‘un-hip’ now.

I know I was hoping I’d remember to include a whole big ‘hit-list’ of stuff as I wrote, but no matter how I tried I’m sure there will be something that I’ll later remember that I forgot to include, and may later be embarrassed by.  For me though, that little flash of embarrassment has just become part of the whole experience.  I just hope no one will ever feel un-loved or under-appreciated… anyone who really has an idea what my experience has been like will understand, I’m fairly sure.

I knew, as I got more wrapped up in the project, that it would probably end up being like my CDs, and if I ever ended up printing even a minimal number of copies of it I’d most likely end up just dragging around however many boxes of copies of them like a proud fool that just doesn’t want to let go of his dreams.  I could already imagine those boxes, stacked right up along with my albums.

I also knew though, that if that did happen, those boxes would be filled with MY WORK that I was able to do with MY HANDS and that they’d represent my true, core intent to find a way to make my own living, with my own skills.  And I as I worked, I decided that I’d be as PROUD of the work that I did in writing the book as I am PROUD of the work that me and all of my friends did recording and supporting the albums. 

At least back in the summer of 2015, it was still at least partially about making a genuine effort to self-employ.  I felt that there had to be a way to use my story, and the skills I still had, to get by.  I was working with what I still had, because I knew I could never take what I could still do, and the tools I still had to work with, for granted.

Putting my story together just seemed like it was what I was supposed to do, with the time I still had in Santa Cruz.

See, at the beginning of that summer, Amy and I had decided that we had to split that town and get ourselves back home.  At first, we were going back and forth about exactly when the departing date would be, and as we felt the financial pressures building up, we had moved that date closer and closer.

At some point though, I was looking at a calendar and it struck me that maybe we should get on the road on August 9^th.  It gave us a little time to pack and to really get ready for the trip, and it would be twenty years to the day since I had arrived there in California with the ol’ band.  It just made sense.

It had been long enough since I’d seized that I was back to letting myself use my bicycle to run short errands around town.  Knowing that I might have any amount of paperwork to deal with as I’d started re-filing with Social inSecurity, I’d gotten a PO box when I’d moved into Amy’s place, because it was probably a little more secure than having all my mail arrive at a regular-old-mailbox in an area that has so much foot-traffic going by, down by the Boardwalk.

Checking my mail had become a semi-regular errand to run, and it gave me a reason to go outside, even though I was pretty broke by then and wasn’t going to indulge in the ‘treats’ of downtown.

One day, as I peddled down the levee path along the river, I thought about how different things were when I’d first arrived in that town.  The band I’d moved there with had then been able to set up and play at various places without getting a ticket, but now there were permits and fees for everything. 

Santa Cruz had all of its ongoing homeless issues constantly growing and gnawing on it, as it simultaneously tried to paste a clean and uniform façade across the front of all the businesses down the main drag, while it posed for the tourist’s cameras and for the parents visiting from out of town, who might have been trying to decide if this would be a ‘nice place’ to send their kid off to college. 

I’d gotten to serve all the major groups of eaters by then, because I’d fed ‘em all–from luxury resort guests to restaurant diners to the homeless to the University students.

As I rode along the river, I came up to one of the several bridges that the concrete path went under along my way.  It was Laurel Street, but I referred to it back then as the ‘Piss Bridge’, because for whatever reason it had become a place to ‘hang out’, and it stunk. 

I always did my best to peddle through quick and not say nothin’ to nobody.  Only problem was that increasingly often, the younger punk-bitch-wanna-be-gangsta-trolls would want to ‘rule’ the sidewalk and not move out of the way when they saw that a bike was coming–even if I’d yelled ‘look out’ or something.  One time I hit one of them with my rear-view mirror trying to get by, because it was ‘too inconvenient’ for him to get the fuck out of the way.  I kept on a-rolling along.  Hope it hurt, bitch.

This day, there wasn’t anybody blocking the path, but as I came out from under the bridge there was a couple of older dudes laying alongside the path in the sun with their bags nearby.  They had their sunglasses on, and they weren’t trying to bug nobody, but there was a maybe sixty-something plastered-drunk dude with a long grey beard muttering at them as they tried to ignore him.  It was a kind of typical downtown-lately-Santa Cruz scene.  I used to make my living feeding these folks.

I headed on to the post office, got my mail, and headed back.

As I came up to the ‘Piss Bridge’ again, I could see that the same dudes were still laying in the same position with the same drunk guy blabbing away at them that they were still trying to ignore, at least fifteen minutes later.  Pretty classic.

What stuck with me though, was what I heard the old drunk guy say as I rode by… something like “thank both you gentlemen very much and you have a lovely rest of your sunshine daydream.”

Sure enough.  Time had come to get the fuck out of there, and twenty years to the day from when Uncle Jerry had died would make it pretty much perfect.

I may not have been able to swing in from out of town with my little four-piece band and play some free shows and have some kind of movement of cool musicians form that would pledge to make some kind of effort to keep things cool and fun and affordable and danceable and all that good stuff, but after twenty years I sure knew that I couldn’t expect the trends I’d seen to change.  And I absolutely couldn’t expect to make my living by playing original music, at least not around there.

But so what?  I’d WON.

I had already beaten ridiculous odds and I planned to continue to beat them.  After being told that I was not going to get better, I’d gotten better, in part because I’d somehow gotten treated by some of the absolute best doctors that I ever could have hoped to get access to.  I had undergone ‘cutting edge’ surgical procedures that I could never have hoped to receive almost anywhere else on the planet, and I’d learned more about my condition than I could have ever hoped I’d learn—and that knowledge would now be my primary weapon.

But that was far from all I would be leaving with.

And after years of thinking I was always going to be a lonely man until I died, I had fallen in love and gotten married to a woman that grew up in, and loved (and hated) the same area I’d grown up in, and moved to the same place that she loved and also was disappointed in, for so many of the same reasons.

I’d won. 

But now, I was we and WE would keep on winning.  I was so proud, and knew I that I would make sure it happened one way or another–even if we had to open our own restaurant back in Lansing so I could work in it every damn day, frying up all the chips and chopping up all the salsa veggies my damn self.