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CHEFILEPTIC

by Nate Bennett

 

EPISODE 1

Hi world, I’m Nate Bennett.  This is the first episode of Chefileptic, my autobiographical podcast series.

Some subjects discussed in this section are: my first diagnosed seizures (and the fallouts that resulted), scandalous SOP’s by the seaside, and where my disability did (and didn’t) start.

If you enjoy this episode and/or it makes you think of someone who might, share it!  Why not? It’s as cheap as entertainment gets.

forward: honestly, not all about money

1. when it started

2. preexistence

3. my last resort

4. realizations

forward: honestly, not all about money

I’ll be frank with you right from the get-go here.  I may not be totally sure about all my details, but I do still know enough about myself to know that I’m not into trying to be anything other than honest.

I figure I should just admit up front that I’m up against some possibilities that I never thought I’d have to plan for, and therefore didn’t.  I’m up against the real reality that I will have to figure out any possible way that I can to make my own way here in this life with whatever I have left to work with, and as I get this story started I’m running with a skillset that includes not only being able to remember what I did yesterday but even to write about it today–which in my recent years has been something I’ve had to realize I can’t take for granted.

Thing is, I’m still alive, and (at least for now) I can tell you my name, which are actually apparently both miracles.  Not only have I survived, but somehow I can still tell you about my journey—as crazy as it is—and now it appears that doing so might be part of answering the very basic question I’ve been facing about how I’m going to manage to do my part to keep my precious little family housed and fed.

It’s strange because I had always just figured I’d be able to work, you know?  I think most of us start off with the assumption that no matter whatever happens we’ll always be able to just do whatever job we have to do to get the money to pay for the whatevers of life, right? 

Of course, like most folks, I didn’t spend much time planning for the worst.  It seems clear to me now that I must have somehow just gone forward thinking that if I ever got hurt real bad or got super-sick or something I’d somehow be taken care of by some kind of magical network of insurance or welfare machines or something… such a ridiculous assumption.

At some point a while back, I had to realize that things weren’t actually going to be so simple and I had to come up with some other way to use whatever skills I still had to work with–and quick.

It began looking more and more like I had to figure out how to self-employ somehow, even if I had been stamped with the ‘disabled’ label by the mechanisms of our fine modern system.

I’d spent my most of my life in the food industry and making music on the side.  One had always paid me, and the other never did; I bet you can guess which did what. Now I guess I’m like, (wait, I gotta think about it here…) 48 at the moment, so I’m still hoping I have a little time left in me.  If I didn’t really have that hope thing working, I could not have allowed myself to marry my loving wife Amy a short time ago.  Maybe having that hope in me really is the part of my mind that’s kept on working right.

After I graduated from high school in 1990, I did a year’s worth of college and then I was like, “‘nuff of that school-stuff”. I had realized that if I worked in a kitchen by day, I’d leave work fed, and then I could then spend the rest of the evening jamming with pals.  And once I knew how to cook, it seemed like I was all set because food-jobs feed you when you work, and even if I was just cooking for family or friends or whoever else, the cook (me) would always be fed.  I spent about half of my life in kitchens, feeding everyone from affluent resort guests to college students to homeless people, and it had always gotten me a full belly, and along the way I managed to keep my bills paid.

Now though, the recipe’s not so simple, despite the incredible miracles that have kept me living and may yet add up to helping me ‘get better’ (knock on wood).  Clearly, making a regular living won’t be simple for me again.  So, I’ve had a particularly challenging puzzle to put together.

At some point, I decided that I had to figure out how to use whatever skills I still had to make anything that I could sell.  All that music I’d written, recorded, and played over the years had never sold well enough to pay for my basics, so it was time to try something else.

I’ve always liked to write, and I figured my own story might be unique and interesting enough, at least to a small slice of the world, to be worth writing about.  I was still naïve enough to think I might be able to write a book, sell the book, and possibly even make a penny.

So, I wrote it.

That was before I learned that if I ever got caught making more than $335 in any single month, my current source of income and medical insurance (which is early retirement caused by disability) would vanish—forever.

Writing it helped me in a few ways, I suppose.  It made me crack open my own history and go over what happened before and after what, which had been all scrambled up by my memory loss.  It helped me re-study and re-remember just how fortunate I really am, despite everything that I (and those around me) have been put through by my disability.  And, for a short time anyway, it kept me busy.

It just can’t make me any money—not that it likely would have.

That said, it doesn’t mean that the work is ‘worthless’.  After all, it could still be interesting, and maybe even helpful, to at least someone out there, either now or in the future.  When I really thought about it, I realized that I had written a book that would have been at least somewhat enlightening for me to have been able to read, years back, when I was first diagnosed, or had just gotten through another rough patch and was trying to figure out how I was going to manage to function.  This realization meant that it could still maybe help (or at least entertain) some other disabled person, or maybe their family and friends—which meant it was still worth sharing, even if it wouldn’t (and couldn’t) ever pay me anything.

So, I decided to do a series of podcasts and blogs of it.

If you know someone who might enjoy, or even possibly may benefit from hearing or reading my story, let them know about it!

Even now, I still find myself planning to make more music.  Just as it always has, the stuff just seems to build up inside until I have to put it somewhere, even though experience has taught me not to get into thinking that all of the sudden I’m ever going to make some big hit song or even write a jingle for a cereal commercial or anything else that could likely make me a damn nickel.  I just hear the stuff, and making it become real has been part of keeping me busy so I don’t spend all my time tripping about how and if I can deal with this crazy reality that I keep swimming back to.  Apparently, it’s likely just a symptom of my super-unusual brain, though it took me quite a while to find this out.

Admittedly, I do have a pretty damn miraculous and amazing ‘true story’.  Seriously, I mean it.  It’s a weird one.  It’s probably not the weirdest ever, and it certainly isn’t (yet) the grimmest or saddest, but for quite a while there I wasn’t even letting myself hope for a happy ending, because things was not exactly looking up.

Now, I wouldn’t want anybody to think that I’m just some whiner or egomaniac that thinks the world should give a crap about his yarn as opposed to anybody else’s.  Thing is, I know that when you really look at the whole story leading up to this moment, it is pretty damn interesting–if not totally bizarre.

1. when it started

When it all seemed to start wasn’t really when it really actually started, as I’ve come to understand.

Apparently, this thing started quite a long time ago–much further back than I can recall. 

As I’ve put more and more of the pieces that make up the whole picture together, it seemed, at first, to begin when I was a two-year-old.  That’s when I got knocked down by a dog named Captain and smacked my noggin, resulting in a nasty concussion.

I guess I was ‘out’ for about 24 hours, and the doctors were about to open my head up because they figured I had bleeding on the brain, but I woke up, so they didn’t.  For a long while, it seemed most likely that this event was most likely the cause of my seizures, as people who have traumatic brain injuries (TBI’s) often have episodes later in life.

More recently though, the leader of my team of doctors explained the origin of my seizures appears to have come from even earlier than that event.  The study I underwent at Stanford had revealed the source of my episodes, a tiny ‘lesion’ deep in the left hemisphere of my brain, which apparently, I had to have been born with.

As far as my working memory sees it though, it all really started on 9-9-99 in Aptos, California.  I was 26.

My roommate then was my younger brother Bryan.  He and I were standing outside on the driveway in the sun.  I don’t remember what we were doing or what we were talking about.  It was in the afternoon, and as usual near the coast in California, the weather was gorgeous.

I don’t remember if I had smoked weed yet that day or not, but it was a regular routine for me back then, so I likely had some in my system.  It was still early in the day and we really weren’t crazy partiers (at least not by our standards), and neither of us drank very often.  So, we were at least mostly sober, and we were just BS-ing, and then that feeling started.

I’ve known that particular feeling since my youngest times.

When I was a little kid, it would occasionally come out of nowhere, like when I was playing at the playground in our apartment complex, or when I was listening to songs on the radio that somehow had the power to take me to this magic place.  It wasn’t like any emotion or any of the drugs I tried later in life, and I never could just make it happen by force of will alone.  It somehow came along when it wanted to, made me recall other times it had happened, and then it would just vanish again.  It didn’t interrupt my day or alarm others around me–it may have just made me stare for a moment wonder why it had chosen to come back, and then it would be gone again.

As I grew up, it sometimes seemed to be gone for years on end, and then it would happen several times all in the same day–without any explanation and always catching me by surprise.  I was not threatened by this feeling and I had no reason to be, but I did need words to describe it; I simply assumed that all of us have these moments.

At some point the term déjà vu seemed to be the best words I had ever learned for it, because the feeling always made me reflect back to other times that I had experienced it, and it was often accompanied by memories from early childhood.  When I had learned these words, it just seemed to me that other people must also have this same experience, or these words wouldn’t exist to describe this feeling so well.

For any who don’t know, these French words translate in English to ‘before seen’ or ‘already seen’.

Well, on that day, for the first time in quite a while, the feeling returned.  As usual, I was not threatened or worried by it, but like always it did distract me.  Strangely, as it often has, it made want to savor it somehow–to draw on the memories that came along with it.  This time though, it kept getting stronger.

It then somehow took away my ability to make words.  I could hear myself begin smacking my lips, over and over, as my ability to speak started to slip away.  I looked at Bryan, trying to explain what was happening, but I could just hear the smack-smack-smacking of my lips as he looked at me with a very confused and worried face.  One of my arms began to lift and pointed outward, but I hadn’t ‘told it’ to do this. 

All control was lost, and then time disappeared.

I began to awake before I could see.  I don’t know if my eyelids were shut or if I simply could not process the information that my eyes collected.  I began to hear first, in darkness.  There were many voices.  I was on my back in a busy place, somewhere that was too busy to be a dark place.  The voices I heard both broke big news to me, and prophesized what was to come.

I cannot say who was saying which-what and I certainly can’t quote them with word-by-word accuracy, but I did end up with enough memory of what was said to be made both scared and angry, and this anger lasted in my memory for a very, very long time after that day.

It took even longer to allow myself to shift this anger away from those who had simply made those words I had heard as I awoke that day to instead blame the giant, evil, faceless monster-mechanisms which had tugged the strings behind this scene that day.

So, I’ll do my best to ‘paraphrase’ what I heard:

“He had a grand mal seizure.”

 “Stabilize.  I need an IV here… (etc. etc., lots of medical jargon)”

 “He needs an EEG, an EKG, an MRI…” (a jumble of acronyms I did not yet understand).

I heard wheels rolling under me, and I realized I was on my back in a bed, surrounded by the world of medicine—in an emergency room.

Then, the big bomb dropped.

Someone whispered: “he doesn’t have any insurance.”

This whisper was repeated and muttered around through all the voices: “doesn’t have any insurance…doesn’t have insurance….”

There was a short, but very noticeable break in the dialogue.

Then someone said: “Let’s get him out of here.”

I know I heard those words, and I do remember them clearly.

I don’t know who said them, but I know I heard them.  I’m pretty sure no one realized I had heard anything, because it was still dark-land for me, so I either didn’t have my eyes open, or at least I wasn’t forming words yet.

I know they all heard it though, and they immediately mumbled in acknowledgement with an understanding that I was to be placed in the ‘other’ bin, and real quick-like.  I was a hot potato.

That’s when another big seizure started, so I guess they all had to deal with me for at least a little while longer. 

When I finally came out of the cloud of whatever drugs they had knocked me out with enough to be released to my bro, I came out into the waiting room and saw that my friend Mike was also waiting there; he had been called by Bryan and had dropped whatever he was doing to rush down to the ER.  I could just see the worry on their faces.

I realized I was pretty sore in a number of places. 

Though I had managed to drop the habit years before, I wanted a cigarette real bad.  I remember that I got myself a pack of reds and sat on a curb in front of the party store that was somewhere near the hospital, smoking one after the other like I hadn’t ever quit. 

This was the heavy news, the serious stuff.  Everything would be different now.

Eventually I paid ‘out-of-pocket’ for that trip to the hospital—with lots of embarrassingly small payments, over months and months.  I wasn’t insured when my bro called the ambulance, I was actually just a few weeks from the end of my six-month ‘probation period’ at my new job, when my medical benefits were supposed to start.

And those benefits didn’t start as they were supposed to, but that’s another subject I’ll get to a little later.

So, it all somehow seems to have started that day, though I now understand it really started long ago, possibly even during the time I was still in the womb, before that head injury had even happened.

A number of odd-shaped puzzle pieces began to drop into place, but none of them helped make my life-puzzle a brighter place to be, and I certainly didn’t have all the pieces.

2. preexistance

I had no idea what world of shit I was in for. 

For starters, at least as far as I could remember, nobody at the emergency room had mentioned to me or my bro that, by law, they had to report my incident to the Department of Motor Vehicles, and that my driver’s license would automatically be pulled within 10 days. 

Of course, they may have told me and I could have just not retained it, as I now know can happen as I recover in the time following episodes.

I mean, it made sense later on, but when I first opened my mailbox to a notice from the DMV that said my license had been yanked and I had get a neurologist, and have them report to them that I could drive, I was pissed and confused to say the least.

Just what was this link or conspiracy between the government and medicine I was going to be learning about?

I was then working as a banquet cook doing the breakfast and lunch shift at a local resort, about eight miles from my house.  I had been hired to work a shift that started at 6am punch-in time, and this was not flexible.

And there were no buses or any other forms of mass-transit at that time of day.

Soon I learned that because I had these seizures before my insurance from that job had started, anything seizure-related would not be covered until I had my insurance working for six months.  When my insurance did (finally) start (it was way late), I first saw the demon-designed rubber-stamp words ‘preexisting condition’ which I came to see as synonymous with ‘you’re fucked’ from then on.  It meant that any and every appointment relating to my brain and every treatment and every test and every prescription had to be paid for directly from out of my pocket.  And if I didn’t have the money for any of these things, I’d have to figure out the ‘poor-folks’ way to get them, or I’d end up with no driver’s license.

But I had to keep that job, so I could get and keep those benefits, so I could keep on working, etc. etc.  See, at least then, not every cooking job came with medical benefits, at least not in that area.

So, at that point, I had to be able to get to work, so I could get insured, so I could see the ‘specialist’, so I could get the right prescription (or prescriptions) to control my seizures, so the doctor could tell the DMV I was ‘safe’ on their report, so I could drive, so I could keep working, so I could stay insured… a vicious cycle that I guarantee you keeps people who should not be doing so driving, just as I started to do back then.

At that time, my commute vehicle was my motorcycle–a 1975 Honda Goldwing (bless her faded aqua-marine and gold-pinstriped soul).  I didn’t have a working four-wheeled vehicle, so the bike took me everywhere, as it had been doing since shortly after I had arrived from Michigan back in the summer of ’95 and realized that snow was no longer a factor I had to consider when choosing my means of travel.  From that point on, bikes were my primary get-around machines.

I then began to face what turned out to be only the early taste of a whole world of ethical dilemmas, and somehow managed to reason that if I was going to justify letting myself drive without a license, I’d better also be able to justify riding without one.  I know how that might sound whack, but somehow I had reasoned that a vehicle with four wheels is larger and might cause even more damage to others, if I ever was to spaz out on the road.  Real logical.

So, I started ‘sneaking’ to work and back—only driving when I had to commute.  This was really the only time period I know of, thank God, that I ever did drive outside of the law and the doctor’s orders since it all started.  But that’s what I did at first while I tried to get things figured out.  I knew one thing, I also had to keep working solid because I was in deep, and I was getting deeper in debt real quick with all of those medical expenses that kept coming along.

During that stretch, I started getting the bills.  Ambulance.  Emergency Room.  Pills.  Doctors.  Tests.  DMV fees.  I still remember how my head spun with each bill I’d open.  It was like I’d driven drunk and gotten busted or something.

All the sudden, so much of my time and energy was grabbed up by this thing.  I had always been a man that paid my bills (at least eventually), and I didn’t want to stop doing so, but I didn’t have squat for savings or equity to work with.  For the bigger bills, I just had to set up little nickel-dime payments and start chipping away at them.

I wanted those benefits bad, but when I finally got them, I got to learn even more about ‘preexisting conditions’, the hard way.

3. my last resort

When I headed into an interview at that beach-side resort in May of ’99 I was in a whole different situation.

In my world, there wasn’t yet any disability, or need to weigh decisions with such a thing in my mind.  I was in my mid-twenties and I could get around with just my motorcycle, though I was keen on being able to have a four-wheeled option soon, and wanted to be able to afford one.  I had come to California to make music, and was focused on being able to do so; my ‘day job’ was really just about enabling that plan.

I knew that I’d be impressed by the facility, and I was for sure.  It was large, clean, and modern, and it clearly put out big volume with a larger number of workers than I’d ever shared a workspace with.  Surely, this was not a small business that might be on the brink of shutting its doors.  My goal at that time had been simply to find the most ‘solid’ (and best-paying) job that I could find near the house where my bro and I lived, and I was hoping this would be it.

Admittedly, I wasn’t worrying much about benefits like insurance and retirement plans back then, and such aspects of compensation just seemed like ‘frosting on the cake’.  The position I was applying for offered medical insurance beginning six months after starting the job, but this was before Obamacare had begun, so back then I wasn’t being fined for not having insurance.  Although this would be my first job with any benefits, these trimmings didn’t apply directly to the making of rock n’ roll, so I didn’t yet of think of them as being essential.

I had plenty to learn, and indeed I did end up learning a great deal during the time I spent there.  Much of what I learned was naturally directly about food and related service, but unfortunately, I also got to learn plenty about matters that would never fit on any plate.

I interviewed with the Chef.  He was serious and professional, and clearly this was a career for him.  I had applied for the position of Banquet Cook, and though I had worked in food service for about ten years by that point, doing this job would clearly require me to learn a lot.

The Chef had asked me directly why I thought I was qualified, and had told me that most who would seek it had some amount of formal training.  I told him that I’d had enough experience to realize the difference between the role of a Chef, who makes the menu and then leads the crew to carry it out, and the cooks, who directly prepare large amounts of food and do much less ‘glorious’ (and much more repetitive) work.  I told him that I planned to learn what he would want made, and then to repeat it over and over, consistently, safely, and efficiently, making the product of my work adhere exactly to what he had designed–without questioning or adding my own ‘two cents’ about what could have been served instead.

I had been around kitchens long enough by then to know full well that food is something that everyone has their own opinions about—and I knew that in a professional kitchen, the opinion of the Chef was really the only one that mattered.  My job would be to help turn the designs and ideas I was given into money, plain and simple.  I was hired.

Most of the time, my shifts began at 6am.  I worked with a crew that usually prepared foods for buffet service to crowds that often numbered over a hundred persons.  Very often, the groups we fed were directly or indirectly related to the nearby and then-booming Silicon Valley companies, who were staying at the resort for whatever combos of conference, trainings and/or pampered recreational employee bonding-times.

There were boundaries of etiquette that had to be understood and adhered to.

First off, I was told immediately that we didn’t serve customers, we served Guests, and we were never to say “no” to a guest’s request.  If we couldn’t carry out a request ourselves, we were to find someone who could, and quickly.

Also, we had to look good.  Being unshaven and grubbed up by food in the presence of our Guests was not acceptable—whenever we would potentially be seen directly by Guests, we would change into a fresh white double-breasted shirt, buttoned to the top.  I remember that I’d had a habit of leaving my top button open at other kitchens to stay cool, but when Chef saw that he had frowned and barked “button your top button!” at me, and from then on, I did.

Often, we would make the meals in the kitchen but would post a cook in a ‘presentation’ position near where the food would be served–for example, an outdoor bar-b-que lunch would feature a fresh-looking cook at a shiny-clean grill cooking a few pieces of chicken for the Guests to see and smell, though most of the chicken had actually been prepared indoors.

Many of these protocols were essential to the ‘rating’ of the facility; I learned that this was a ‘four-diamond’ rated resort, which was one level down from the top rating in this system (which applied ‘diamonds’ rather than ‘stars’).  All new to me.

Although I hadn’t lived in this part of the country for most of my life, as I began working, I felt like I fit in fairly quickly with all of the staff that I worked with.  In this environment I was part of a minority, as most of the workers were Spanish speaking.  I learned later that at first the rumor had gone around through the Spanish speaking crew that I was probably some kind of racist-Nazi—I was bald then, and I soon learned the word pelones (Spanish for ‘hairless’).  People realized fairly quickly that this wasn’t the case, and when I was told this had been the first impression, I was like… “What?!  Me?!  Racist?!  Are you kidding me?!”.

What can I say?  We all make judgements based on a person’s appearance.

Soon though, the crew all realized I was just there to bust ass like everyone else and there was no supremacy-thing going on.  I started making friends and improving my kitchen-Spanish as I went.

I knew as I began that I’d be serving a community that was ‘above my pay grade’ and that I’d be seeing some patterns that would be new for me, and sure enough, I did.

For one thing, we were always to prepare a bit more food than would likely be needed for any banquet, and to never allow any pan on a buffet to sit empty.  Naturally, this caused a constant stream of waste, and I often watched as un-touched product was shoveled into the trash can as meals were cleaned up after.  This is referred to as ‘overage’, and is simply figured into the cost that was being charged for meals.  At first, seeing this was often a shock to me, but soon it just meant I’d done as I was ordered.

A few times, I helped out in the in-house restaurant that also was served by the kitchen.  Sometimes an English-speaking person would be needed who could communicate directly with Guests, so I’d get a change of scenery.

One time, I had to work the omelet bar for a Sunday brunch.

I remember that I was warned by servers that I’d be able to tell if anyone I’d serve would be one of the ‘investors’ in the operation.  They were notorious for making obnoxious requests that would test our manners to ‘quality-check’ us and make sure that our training was up-to-par.  They liked to ask for extras, and make us “sit, beg, roll over and fetch” to prove to themselves that their investment dollars were being well-spent—and remember, we were never to say “no” to a Guest.

So, in the middle of the rush, I had like five or six omelets going at a time.  A line would form, and Guests would look over the salad-bar type setup to choose what ingredients they’d like in their omelets.  The goal was to serve them what they had asked for, accurately and politely, of course.

One chubby beady-eyed bastard stood out clearly, never smiling.  He scrutinized all the items on the bar, and made sure to order an omelet unlike any that I’d ever made, before or since.  He wanted only items that were not offered on the bar, and I had to get a server to run back to the kitchen for all of them.

It was to be a “smoked salmon and cream-cheese omelet with capers, served on a single egg white, folded in quarters”.

Of course, I couldn’t be sure that he was one of the investor-types I was warned about, but he sure fit the description.

The entire line had to wait as I daintily prepared his bite-sized hors d oeuvre as quickly as I possibly could.  When I completed the task, he grabbed the plate from my hand without a comment and then rudely shoved his way past the line of ‘legit’ omelet orderers, who by then were beginning to make comments and focus their negative waves on him.  Everyone I served that was waiting in line seemed to smile and shrug, and a couple of them even apologized to me, though it was certainly not their fault.

As the brunch ended, I started cleaning up.  A waitress came by, and frustratedly told me that a family that was eating at one of the umbrella-topped tables outside had just ordered and extra lobster so that their kid could play with it in the sand.  I just smiled and shrugged.  I knew I’d see stuff when I got the job, what could I say.  I was glad though that I usually worked in the kitchen, out of view.  I don’t know how long I could have lasted if I had been directly serving some of those Guests that were paying my wages–including benefits.  Supposedly, anyways.

And again, I hadn’t been thinking too much about the benefits thing, that is, until I had that round of seizures at the end of September, just before (hypothetically) my insurance was supposed to start up.  This was when I’d learn all about ‘pre-existing conditions’, when I’d actually have to care about having insurance at all—and I mean really care.

Soon, I’d be needing those big, expensive tests like EEGs and MRIs and all that crap I’d never cared about before.  Naturally, I’d have blown them off, but somehow, I’d now have to get them in order to keep driving.  There was no other way to get to my job to start my shift, and although I asked if it was possible, my shift could not be adjusted, even temporarily.

Fair enough.  I wanted to do what I’d signed up for anyways.

Not fair enough was the round of refusals I got when I tried to get the tests without having an insurance ID number.  It didn’t matter that I was willing to put the tests on a credit card, or find some other way to borrow to pay for them.  Apparently, for whatever reasons, the hospital had had so many problems with not being paid for services that even if I was willing to pay for the–from my own pocket–they wouldn’t provide me with the tests unless I could quote them this ‘magic number’.

So, then I started caring about my insurance benefits, which (thankfully) would be starting up soon, supposedly on the first day of the next month after I’d been at that job for six months.

Except that on December 1, my insurance did not start.

And why?  No good reason.

I had started the job back in May, and this should have meant I’d have insurance by December at the latest.  I started hitting up the Human Resources department.  I was told that my insurance hadn’t started because I didn’t have enough hours accrued, so I asked for a printed report.  The report I was given showed that I had crossed that threshold back in October.

Naturally, I asked again.  I was assured that I’d be enrolled by the first of the next month, Jan. 1, 2000.

Except that on January 1, (apparently) once again my insurance did not start.

HR had given me an ID number, which allowed me to schedule an MRI on January 31, but in February I got a full-sized bill which claimed my insurance was not ‘effective’ until February 1 (you know, a whole day later).

By then I was freaking.

I went back to HR about it, and was given a letter on company letterhead on February 4th, telling “Whom It May Concern” that I was covered under Blue Shield Policy #N-00-0070-000 as of January 1st, and if there were any questions to please call them.

The insurance company, however, denied the claim, stating that my coverage had not started until February 1st.

So back to HR I went.

Next, I was assured that this would get ‘worked out’, and eventually was presented with a copy of a letter from the Director of Human Resources to an individual at the insurance company.  The letter explained that I “would have been eligible for enrollment on November 23, 1999” making me “eligible to enroll Dec. 1, 1999”, but it stated that I did not have enough hours accrued until December—which of course was in direct conflict with the printout I’d already been given which made clear I’d crossed that line way back in October.

The letter went on to state that I had been enrolled in January 2000, and stated that the individual at the insurance company could “feel free to contact” the HR Director about the matter.

Naturally, if I was enrolled in January it meant I wasn’t already enrolled on January 1st.

So, I reached out directly to the insurance company.  That’s when shit got really weird.

Now, insurance companies are big, and I can’t be sure that whomever I’d talked to knew what was what, but I was assured that the person that the letter was addressed to DID NOT EXIST at the insurance company, and that this letter had NEVER BEEN RECEIVED by the insurance company.

So, it appeared that this letter was a cover-your-ass maneuver.

Now, one thing to understand is that by then, I already expected to pay out-of-pocket for the emergency room, the ambulance ride, the neurologist I had to see, the lab tests, yada-yada-yada etc., but I also cared VERY MUCH about the start date of the insurance, because the insurance company had made clear that EVERYTHING seizure-related would be considered ‘pre-existing’ for a waiting period of six months from the time I was enrolled—which to me clearly should have been back in December of ’99.

Now that I had this suspicious letter in-hand, it was time for me to ask for a meeting with someone ‘higher up the food chain’ at that job.

Before that meeting I got a little ‘wise advice’.  It’s advice I’d still pass on to anyone else dealing with any potentially legally-crazy shit, even now. 

I made two sets of copies of all of my original paperwork.  I labelled all pages in one set “copy B” and all pages in the other set “copy C”, and these sets of copies were what I brought to the meeting.  This would make implicitly clear that “copy A” was too important to carry, because it might be needed for future legal proceedings.  It meant that I was serious, and that I may have already sought legal help.

When I met with the administrator, who’s name I shall not include, we sat at one of the umbrella tables outside as we flipped page-by-page through these stacks of copies.  It was all there, and we both knew that everything I’d need to fight (and win) whatever legal proceedings that I might soon start up was right in front of us.

I was assured that this would be dealt with immediately, and it was… boy, was it.

Now keep in mind, throughout this whole madness I had only thought I was dealing with my own problem, my own mess.  I wasn’t crusading or fighting for anyone other than myself.  I didn’t suspect that anyone else I worked with had been dealing with anything similar in regard to their insurance, and it’s very possible that what happened next was just a pure stroke of coincidence that had nothing to do with me or my issues.

But for whatever reason it was though, the next time I entered that kitchen I saw many of my coworkers holding those shiny-brand-new booklets that the insurance company provides when medical benefits are first started.

And, again perhaps by pure coincidence, most (if not all) of the individuals who were just given these benefits booklets just happened to be Spanish-speaking.  Many had families.  All were smiling.

I was told soon after by one of them that he’d been trying to get his insurance started for over two years.

More than even before, I was now pretty damn cool with most of those that I worked with.  Even the people who spoke English and did already have their benefits knew that what had been going on was fucked up.

And whatever number of administrators and HR folks knew that I knew that they knew, and at least one knew I still had ‘copy A’ somewhere.  None of them wanted the kind of press that would have come from this little scandal (had I gone that route).  When they’d breeze through the kitchen, they’d make polite small-talk with me through gritted teeth, like “hello Nate, how are you doing lately…”.

Deep down, they knew I wasn’t out to take anyone down, I just wanted to get what I’d been told I would get when I started the job.  I worked hard and was a good employee, so we all just kept-it-cool.

I bet some of those investors didn’t feel so cool though, when they saw whatever jump in expenses were caused once a majority of their kitchen crew finally got their medical insurance.  I hope it freaked out that salmon-and-cream-cheese-omelet jerk real good when he took a look at how his investment had performed during that particular little stretch of time.

What I’d have to say to those investors, and to all the bungling-bobbling-ball-droppers and shady-dealers that all knew damn well what was going on back then is this… YOU’RE WELCOME.  This shit could have blown up real good, but it didn’t, because I didn’t blow it up.

My insurance start-date somehow eventually got ‘retroactively’ changed to January 1st 2000, but the last document from the resort’s HR showing I was still having problems with the insurance company denying my claims is a hand-written letter from the HR Director dated April 12th 2000, just under 11 months after my start date. 

The insurance company was still calling my condition ‘pre-exiting’ into mid-June of that year.  From the time of this ‘educational experience’ on, I knew I’d damn well better not ever allow my medical coverage to ‘lapse’, or my condition would get this horrible label all over again.

I’ve been able to quote all these exact dates and particulars because all of these documents are still in that epic stack of ‘copy A’s’ that I’ve kept for all these years.  And now that I’m sharing this story, I’ve decided to keep these documents locked up somewhere safe, away from where I live.  I know that might sound paranoid, because it is. 

I’ve had plenty of experiences since that time, over two decades ago now, to justify a little paranoia.3. 

4. realizations

Like I said before, waking up in the emergency room wasn’t where this whole disability thing had all really started.

Turns out, there’s where it actually really started, and then there’s where I had been thinking it probably all started (until more was learned about my condition later).

Where (for quite a while) I had thought my whole neuro-saga had originated before was back in Grand Junction Colorado in 1974.  That was when I got the big head injury.  So, it had only seemed to make sense to my doctors that this event was probably the origin, and really it could still be the case–it’s kind of impossible to extrapolate all of the what-caused-whats from out of the whole thing. 

I think that any parents that experienced what mine did back then would likely make the same conclusion too, because it was apparently pretty high-drama-life-and-death-type stuff.  I don’t remember it at all actually, but I’ve retold the story (as I know it) plenty of times now, believe me.

From what I’ve been told, my Mom and Dad used to be married.  No, seriously.  I know that if you know both of them it’s a little hard to imagine, but when I was much younger apparently they were a married couple.  Long time ago.  Of course, most people don’t know either of them, but sometimes that’s what I have to do–remind myself that somewhere in history that seems so very long ago, they figured they were in love so they got married and had a kid (me). 

That was all back before my earliest memories of their relationship, which was the whole divorce-and-custody-battle part that went on during my early years.  I still love them both very much, but it’s hard for me to imagine them as young, adventurous people who had decided at some point to pick up and move from our native mid-Michigan to a small town in Colorado with their two-year-old, only to return a short time later when that whole experiment hadn’t quite worked out as they were hoping it would.

I guess they had decided to get a dog from the local shelter to be our family pet.  Mom told me that I was toddling around outside and this dog had just been brought home, a male Weimaraner named Captain.  Some family was visiting, and she stepped into the kitchen for a second to check on something and that’s when the dog had knocked me down.

Well, I balled, and Mom came running out to work the ‘mom-magic’, and then realized what had happened because I had a ‘goose egg’ forming on the back of my head.  At that point I was still conscious, and I gradually quit crying and acted normal again, so nobody thought I needed to go to the hospital or anything.

A short time later I guess Mom had put me to bed, and she soon came back into the room to check on me and found me convulsing.  She didn’t know or understand that she was seeing a seizure then, but now that we have talked about it years later, she’s convinced that it was. 

The parents rushed me to the local emergency room (I guess the town was big enough to have a hospital).  I had lost consciousness after the convulsions, and I did not wake up for over 24 hours.  From what I understand, the doctors had taken an x-ray to determine that I had hematoma (which is bleeding on the brain).

At some point years later, Mom apparently tried to find out if that hospital might still have records from that event (maybe like old x-rays and stuff), but apparently at some point it had burned down, and all its records were destroyed.  I don’t know if they’d still have had anything at the time she checked, but it would have been interesting to see the records and whatever doctor’s notes might have been in the file.  I’m sure all the pros that helped us knew I was lucky to be alive, and I don’t doubt that they probably suspected I might have some issues later on.   Irrelevant details now, I suppose.

Anyways, it’s understandable that anyone who was around for that whole situation would most likely make the conclusion that this incident was the most likely cause of the problems I had later on.  I’ve learned, though, that this isn’t necessarily the case.

Now that a ‘dream team’ of super-skilled doctors knows all they know since I’ve undergone so many tests and have been probed and photo’d as up close as my brain has been, apparently there is a working conclusion that I was quite possibly ‘doomed’ for this all from the very beginning.

See, apparently my brain had likely formed ‘wrong’ well before the whole dog-thing ever happened.  You know, development phase.  Fetal times.

I only learned about this ‘development-stage’ theory after my big ‘seizure-mapping’ surgery at Stanford University in June 2014.  Both my main Stanford neurologist, Dr. Kevin Graber (who led the study that ended with the surgery), and my local Santa Cruz neurologist of over ten years, Dr. Joydip Bhattacharya, were apparently in agreement on this theory, and what can I say–after all I’ve been through and learned, I do have total respect for their opinions; they’re the experts in my world.

Sources Cited

Note—all documents referred to in the 3rd chapter have not (yet) been published online.  Also, because I have intentionally withheld the identity of the employer, I don’t plan to cite the documents directly, at least for now.

In the future, I may decide to cite the documents.  They include those mentioned in the following quoted areas:

“…report I was given showed that I had crossed that threshold back in October.”

“…assured that I’d be enrolled by the first of the next month, Jan. 1, 2000.”

“…HR had given me an ID number, which allowed me to schedule an MRI on January 31…”

“…full-sized bill which claimed my insurance was not ‘effective’ until February 1”

“…letter on company letterhead on February 4th, telling “…Whom It May Concern” that I was covered under Blue Shield Policy #N-00-0070-000 as of January 1st…”

“…presented with a copy of a letter from the Director of Human Resources to an individual at the insurance company…”

“My insurance start-date somehow eventually got ‘retroactively’ changed to January 1st 2000…”

“…the last document … showing I was still having problems with the insurance company denying my claims is a hand-written letter from the HR Director dated April 12th 2000…