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CHEFILEPTIC
by Nate Bennett
EPISODE 4
Howdy everybody, welcome back. As you’re most likely already aware, I’m Nate Bennett. This is the fourth episode of Chefileptic, my autobiographical podcast series.
Subjects discussed in this episode include: feeding a crowd (while trying not to join it), how my brother, my buddy and me all learned about status epilepticus (the real hard way), memories of amnesia, and my magic wallet.
If you find this episode worthwhile, and/or it brings to mind anyone who might also, tell ‘em about it! After all, it’s free–the best price I know of.
(This episode resumes where the prior episode, the 3rd in my podcast series, left off during Chapter 11 of my book, Chefileptic. This chapter describes my experience as the Food Service Director of the Homeless Center of Santa Cruz CA, from 2001 to 2004).
11 (pt. 2). from serving Guests to feeding clients
I knew there would be some heavy stuff to learn and see at that job. Sometimes, though, I also managed to find some simpler ways to make some kind of headway.
At one point I realized how to use another secret dining-hall-control-weapon that was so effective, yet so subtle to apply—music.
I had installed a good-sounding system in the kitchen to work by, and I found that having the right music for mealtime could really make things smoother. This crowd responded really well to the lighter classic rock and country and pop ranging from the fifties era on up through the seventies. I figured out where the ‘soft spot’ was for this crowd, and kept a ready supply of music on-hand that I could drop in whenever I needed.
If it was getting near the end of the month and people were on edge from being broke and being without whatever they were jonesing for, it was time for that seventies-radio mix. If the crowd sounded like they might all be starting to fight with each other and bitch and whatever, I’d just drop in some “You’ve Got a Friend” or “Heart Of Gold” or “Raindrops Keep Falling On My Head”, and a minute later I’d look out there and everybody would be leaning on each other and sharing the moment real nice and sweet. It was just like the way Bugs Bunny could pull out a violin and the Tasmanian Devil would quit spinning, and sit down to enjoy a nice, tranquil spread.
If only I could do the same for myself when I started spinning…
But well, I couldn’t. And I was spinning out of control more and more often, and I was starting to fall harder and farther, and it was getting tougher to get back up.
At first, my crew and the admin helped me out way beyond what they could ever have been asked fairly to do. Everyone knew I was a good boss and this job was a good fit for me; I was outwardly strong, and I had managed to improve the food, and I ran a clean and safe kitchen that ended up being noted by the county’s Health Department as one of the cleanest in the area. I showed up to work and busted ass, as long as I knew what planet I was on, which was still most of the time.
So what if I had to sneak off for a few minutes every now and then, right?
It was a facility that served a lot of folks that had a lot of problems. That’s probably a big part of why it put up with me through the intermittent seizures, until it just got too obvious and became impossible to cover up.
Every day, I looked out at that dining room as people ate their meals, and every day I found myself realizing I was not so far from being in that room myself. Even though I had made the point to keep my political opinions away from that job, I still could not escape seeing so many issues playing out right in front of me–pointing out some of the very cracks that I could have indeed been starting to fall through myself. I was realizing that no matter how hard I might try to keep taking care of myself, and working to make an honest living, I just might yet become a ‘client’.
The trays of food were filled in the kitchen and slid under a glass partition to the clients in the dining room; and more and more, that glass became a haunting symbol. Sometimes it seemed miles thick, and at other times it was very fragile and thin. I fought to stay focused on the work, while trying keep my mind from wandering off to heavy questions–like whether or not I would end up on the other side of that glass. No matter how I tried, I still couldn’t help but look up at those faces going by… and sometimes, I’d briefly catch my own reflection in that glass.
It seemed like I was there for a big lesson, whether I had ever wanted to learn it or not.
I learned that many of the ‘regular’ clients were folks with mental health issues, and that people I had thought of before as ‘bag-ladies’ and ‘bums’ were often people with any number of illnesses that had once been taken care of by their families–until their family members had died off, leaving them wandering and muttering alone. And I learned that sadly, these people so often end up alone in part because they often don’t make any kids of their own who could take care of them later on, so once their final siblings or cousin’s cousins had faded away, there was just nowhere else for them to go.
And come to think of it, I hadn’t had any kids either, and my bro was helping me deal with my problem, which was worsening more and more, all the time.
I remember when I came to work one morning, and an ambulance was sitting outside of the kitchen area in the lot. There was an old homeless guy lying on the pavement, apparently having a seizure. A paramedic was talking to him, kicking his boot lightly and saying something like “Bob… Bob… you’re doing it again… you’re not going to make me take you in again, are you? You’ve already gone like five times today… hey Bob…”.
I didn’t get involved. My work was in the kitchen. I did ask around a bit, though, and found out that this client had seizures usually triggered by alcohol withdrawal because he was a blackout-drunk. The paramedics knew they couldn’t really help him, so when they’d get called for Bob because he was flipping out again, they all knew it would just be another ‘lost-cause’ run.
Seeing what Bob was dealing with was surreal to me. It added into a larger conclusion that I’ve gradually put together throughout my life, which I’d very poignantly first realized at the Homeless Center.
In my younger days, I’d done plenty of drugs and drank my share (even though I learned to hate hearing drinking constantly separated from drug use, as if alcohol is somehow not a drug). From high school up through my younger twenties, I’d become plenty familiar with tripping my balls off, long stretches of daily weed-smoking, and chugging ‘till I’d regret it (plenty of times).
I’d even dipped my toe into some of that ‘heavier stuff’ and stayed up all night on various powders a few times—enough to get a glance at just how that road could end up leading me to become something I didn’t want to be.
Thankfully, I had gradually managed to realize that no drugs could never get me high like music could.
Over time, and especially at that job, I had gradually learned to recognize the three major ‘families’ of drugs that have the most likelihood of ending up leading to addiction—the stuff that goes up, the stuff that goes down, and booze. I thought of them as “the big three”, and recognized that they were the stuff of junkies, tweekers, and drunks.
This doesn’t mean that all of the people I was feeding at the Homeless Center were there because of drug problems, but if having a ‘monkey to feed’ was a client’s major handicap, it always fell into one of these three groups.
From my end, junkies didn’t usually cause me too many problems because the effects of their drugs caused them to relax (sometimes dangerously so, as in overdosing and possibly dying), but this didn’t tend to mean they’d be causing a problem for me in the dining room.
Tweekers were usually the most ‘animated’ of the three types of drug problems. With heavy, regular meth use (and of course lack of sleep) comes meth psychosis, and this could cause people to do anything from talking to whatever they were hallucinating, to ripping holes in their face with their fingernails as they came down from a big ‘run’. When I saw the tweekers freaking, I usually had to consider the safety of other people around them; sometimes I’d have to get help from security if they were just too whacked out in the dining room and might have endangered other clients.
Most surprising to me though, at least at first, was how many problems came along with the drink.
I mean, it was visibly the largest part of the drug-problem community at the Homeless Center, and I came to realize that hardcore drunks (like Bob) can end up dealing with pretty much just as many crazy medical dramas from their drinking as the ‘up-and-down’ crowds dealt with from shooting up and cooking up whatever they did.
As clients, drunk people were often belligerent, angry, clumsy, demanding, loud, and even worse–at least some of them did not see themselves as having a drug problem (even though they were homeless and hungry), because their main drug of choice is legal and available everywhere. This was an eye-opener to me, and it definitely made me give alcohol some respect.
That was probably a good thing, actually. I’d realized that I had what was probably the most ‘solid’ job I could hope for in that town, and I didn’t want to lose it by ‘rocking the boat’ partying and risking triggering seizures. During that stretch, I just wanted to keep on working, staying insured, eating my prescriptions, paying rent and bills, and working some more.
This seemingly ‘honest’ cycle was deceptive. In my seizure journal, there’s a big gap during the time period I had the job at the homeless center, but I know it wasn’t totally seizure-free. I just hadn’t gotten ‘caught’ by spazzing out in the wrong situation (yet).
I do remember feeling more than one episode starting up while working and rushing to the bathroom or up to my office and locking doors; laying on the floor till they faded. I was ‘getting away with it’.
And I probably had some at home too. My bro was hip to my scheme, and I’m sure he would remember helping me keep it going during that stretch.
At that time, I had a ¾ ton GMC truck and a couple of different motorcycles I was always tinkering with, and often riding (that area is such great riding country). I was driving to work, and I was handling some business with the truck, like driving to pick up goods at the food bank about twenty miles away once a week. I was even ‘representing’ the HCSC at some charity events. I had that job needing me, or at least it felt that way.
But on April Fool’s Day of ’04, that all got tested.
I had felt one starting up in the kitchen, and ran upstairs to my office to ‘hide’. It was a full-blown ordeal, and I eventually came stumbling down the stairs, bleeding all over and muttering nonsense. There was no denying what had happened.
An ambulance was called—which for me meant ‘bye-bye driving’, and possibly the end of the job.
My bro was my emergency contact, and he was called to the emergency room. They wouldn’t let me leave until I’d been free of seizures for two hours, but I had another just before that time was up, and he had to stick it out even longer. He got to sit around and wait it out at the ER, which I’m sure sucked for him, but it wasn’t going to be the worst time he’d have at that hospital because of my issues.
At some point he was waiting with me in one of the rooms, and I woke (partially) up, looked at him, and then looked at the IV stuck in my arm, and reached over and pulled it out. I started bleeding everywhere.
I think that was the point when I started to get strapped in whenever I’d end up in a hospital bed. I know it’s likely to be a normal matter of procedure for patients who are being treated for seizures, but as of then, I started to ask for the straps whenever I’d wake up and find myself in a bed without them.
I don’t know if I took the next day off or not, but I know I got back to that job as soon as I possibly could have. It was clear that everyone knew what had happened, including my crew, the clients, and the admin. I think I had some scuffs and maybe black eyes (which happened more and more often as I’d bop my nose while convulsing). There was not a possibility of sweeping this round under the rug.
I ended up getting the admin to agree to let me keep my job, even though I’d have to stop driving. I wrote them a nice letter and told them I’d keep my truck so it could be used for errands, but I’d have to work out getting someone else to help with the driving (probably my bro). They let me keep working–at least for a while.
A short while.
12. status epilepticus
A month later, I had another round. This time, it would be the worst I’d ever had. I know now that I’m very lucky to have survived. I had a lesson to learn, and I had to learn it the hard way.
Looking back, it’s really hard to believe that I had made it that far knowing I had a seizure disorder without being informed about this particular potentially deadly scenario.
I did end up learning all about it though, and so did my brother and our buddy Mark. We all learned about it the hard way, to be sure. If I had known this could have happened, I would never have put my bro and my friend in the spot that I did. I owe them both my life, and I can’t imagine what they had to deal with to honor the directive that I had given them.
To me at that point in time, having ‘authorities’ find out about any of my seizures was the enemy. I had paid big bills and done plenty of bus-riding, and even though I was cool with using the bus when I thought I might be on ‘shaky ground’ from having had recent seizure activity, I very much did not want to have to stop working. Again, I needed the work, so I could be insured, so I could keep getting the pills, so I could keep working.
Not only that, but I had begun to see the emergency room as a waste of effort because I did not think they’d be able to truly help me with my condition. To get hauled in there wasn’t going to lead me to any answers, only to more setbacks.
My brother had begun to help me with a certain routine when I started having a seizure. First of all, if I was going to miss work, he had the list of numbers to use to call out sick for me. He knew that as soon as I’d regain consciousness, the first thing I’d start confusedly asking about over and over was my job. Had they been called? Did they get someone to cover my shift?
He also had been forced to learn first-hand what kinds of shit the episodes caused me to do, not only during the grand mal phase of my seizures (when I’d do the thrash-and-convulse and bite my tongue stuff), but also what I would do after the seizures–during what is referred to as the post-ictal phase. That’s when I would start to get up and wander around like a sleepwalker.
Sometimes I’d start falling down and getting up again and falling back down and getting back up, and I’d even puke and piss on things not knowing what I was doing, and this was lasting for longer and longer periods of time, eventually for hours on-end. Afterwards, I would have no memory of that entire stretch of time. I learned later that this indicates a much rarer and more dangerous version of my disease than was first realized.
But Bryan had promised me that he wouldn’t call the ambulance anymore, and he kept that promise.
The big batch of craziness started up on the first day of May of ’04, a month after the one I’d had at work that made me quit driving. It kept up for three long days, and God bless my brother and our friend Mark… they stuck to the orders I had given, which had evolved into something like “if I have a seizure don’t call anybody for anything no matter what.”
My trip has indeed taken some crazy corners. Despite everything I’ve since been through, I can say that this was likely (so far) the most dangerous experience of my entire career in seizing and all the related treatments I’ve been through since.
Status epilepticus (SE for short) is what occurs when a person begins to have seizures over and over without regaining consciousness. It is considered a potentially deadly situation. Older definitions considered SE to be occurring if it lasts longer than a half-hour, newer ones draw the line if seizures last over five minutes or if there are two or more within a five-minute period. I know much more now, but back then I just plain didn’t.
Bryan called Mark for help, and he came and stayed with us to help manage the situation. Over those three days, the two of them would apparently sit me up between when I’d be convulsing (but wasn’t conscious), and they’d pour chicken broth down my neck to keep me fueled. From time to time I’d start turning blue from lack of air (my brain failing to make my body keep breathing), but then I’d finally stop spazzing and start breathing again.
I don’t remember these details directly; I had to be told about them later. I have an entirely separate different memory from this time period.
I had seen many faces… face after face of all the people I wanted to see again before I was done, face after face of friends and loved ones. With each face I had a moment of regret, because I had wanted to do so much more and see them all many more times, but I just had to go, because the choice was not mine.
Somehow, after seeing each face, I’d feel that regret shrugged away almost instantly, and I understood that each person would understand, and so would this person, and so would this person. No matter how great my plans were, I had nothing to prove to anyone anymore, and eventually, that was totally alright.
I had seen a different view of the life-energy of our planet. It was more like one expects from a burning object, like our sun. This globe was a mass of life’s energy, and it was constantly moving and shifting and pulsating, like a star. I was somehow able to view it from a distance, yet I knew that somehow, I was part of it. I was almost there, almost back, almost home.
I had no longer anything to achieve; I was just relaxing, and enjoying the ride. I was just trying to begin to put together and understand and be part of my new place, if this was actually going to be it. And I was relieved, because I believed that my pain was all over and done now.
I can’t know how close or far out I actually got, but I know that I was sure that I was done. I had gone far enough to be surprised as I began to awake–and to immediately be disappointed. I had gotten far enough that I no longer had my name as I realized I was still ‘here’.
Then, pain returned, and it was bad. I could not move.
The pain came from so many places. I began to realize that I was on my side, in my bed. Still here.
And this was going to suck.
I hadn’t gotten away so easily after all. Now I would have to remember things, again.
When I finally got my eyes to open, I looked out at my hands. It was daytime, and I could see them, bent like stiffened claws in front of my face. They were not following orders yet.
I was balled up in a ‘fetal’ position. Every single muscle felt frozen and stiffened, as if it had just faced the kind of strain it might otherwise only have to endure once or twice in an entire normal lifetime of injuries. Every… single… muscle… had been separately, individually stomped on somehow. The muscles of my face, my neck, all the way down to my feet, which were cringed into useless wads like my hands were.
And my tongue was so, so bitten. Really bad. I had already learned that recovering from that particular hurt is a drag, but now I seemed to need to recover all over my whole body.
I slowly got my name back at some point, and gradually realized the messy fucked up insanity I called my life was still here, even though I had really thought I was ‘all set’, and my journey was over. Slowly, after my name came back, I began to get my job, my family, my address, but so slowly.
I was really dumb.
And I wanted those hands to work. Why were they balled up and out of reach? I started to get my arms and wrists to move back and forth, and focused on my hands. I began using the hands by pushing them into each other with my arms so I could start to pry each finger slowly open, one at a time. They would snap right back into claw position, but eventually I started to get them to respond, at least somewhat.
First, I had to pry open the hands. Soon, I was bent over but sitting up. Then I was trying to be able to stand up straight. Then I was making my feet let themselves relax and straighten, so I could take steps.
I don’t recall when I hollered out for help from Bry or Mark, but I probably did. Somehow, I ended up managing to get down my ladder (yeah, the same one I had previously fallen from), and somehow finally got into the bathroom to start cleaning up.
The mirror had much to tell.
First, I saw my face in a form I never had before. I was sort of scowling the most bitter-looking scowl I ever could have, and holding it frozen that way somehow. It was very strange, like seeing another person who is very angry and bitter, and has taken over your face to sulk and frown with. I wasn’t telling it to keep doing that, but my muscles had gotten ‘stuck’ or ‘frozen’ in-position, just like my hands and feet had. I started to rub and try to relax my face with the backs of my still-claw-like hands, but the scowling held its ground.
Then, I opened my mouth. My tongue had been bitten very deeply in the center area, and the gash was a ‘flap-type’ wound that would clearly be hard to heal. All along one side, the tongue was discolored a whitish color, showing impressions of each tooth that had been squeezing on it, over and over, squeezing all of the blood out of it, and leaving it a cold, stiff, white row of teeth-marks.
How could I have done this to myself?
I don’t remember how long it took, but I had to pry open, massage, and focus on each and every part of me.
The convulsions had caused me to tense up every muscle so much, along with having had my blood flow and therefore probably my oxygen supply depleted, that I had lactic acid built up in every bit of every part of me.
In this situation, what goes on is that the brain is flipping out and sending sort of GO-GO-GO-GO-type orders to the body. Normally, your brain naturally knows to tell a given part of your body to tense one muscle while relaxing its opposite, but during a seizure both will go into a full-blast tug-of-war, over and over and over. And apparently, I had been doing this repeatedly, over and over, for three days.
It took me a long, slow, hard few days to get my body to work ‘on command’ and to get my memory to work well enough to make me think I could return to work, but it wasn’t too long because somewhere within that next couple of days, I went back in.
You see, I could not stop working, or everything would be worse.
Years have now gone by, which apparently is like super-extra miraculous. I’ve survived not only through those three days, but also through considerably more ‘crazy stuff’, and the fact that I’ve not only continued living, but can still write to tell about it, has made me feel like there’s something I’m supposed to do or contribute; some way I’m supposed to help, or make some kind of improvement somehow.
I know that not everybody embraces concepts like ‘fate’ the way I do, or has these kinds of karma-driven feelings of obligation like I do, but then, not everybody has been through what I have, or has seen what I have seen during my life-experience. So, to those who would turn up a nose, all I can say is ‘cut me some slack’.
I’ve said many times since I learned (the hard way) about status epilepticus that if I had only been given a single sheet of paper describing it at the emergency room that treated me, I might never have ended up in the situation that me and Bryan and Mark endured. So maybe there it is—the conceptual mission defined.
Who knows, maybe just by telling my story, I might even help spearhead some movement on the idea, right? I mean, it’s not like an impossible thing to visualize; a single piece of paper with some standard downloaded or copied info on it that gets handed to patients when they’ve been treated for a seizure.
I’d also make the point that it’s important that it be printed out on paper too, not just a link or text or email etc., because people who have had seizures often forget some amount of time before or after an episode (I know, it’s also happened to me). For the patient, having that note lay around on the table or get stuck on the fridge would give it a lot more chance for it to ‘sink in’ later, not only for them, but for their families, roommates, and friends.
At some point later on down my road, I ended up in that same emergency room again after yet another seizure, and this time I was handed a print-out, exactly like the one I had been thinking of. Progress, baby! I was really pleased with the printout when I read it later. It contained exactly the info that would have been great to have had way back in 1999 when I first walked out that emergency room, but clearly progress had been made.
I hope that similar printouts are handed out to people that get treated for seizures everywhere around the world. Unfortunately, I’m sure that isn’t yet the case. That said, I ask that if anyone you know ever has a seizure that you make sure to ‘share the word’ about SE—it really could mean everything for them.
For me, (knocking on wood), I can say that that trip I first took through the status-state was not the only one I’ve ever had, but (so far) it was definitely the worst. It redefined the concepts of pain and recovery for me, and it made me realize that even that experience could still have been worse–to levels deeper than I should let myself dare to dwell on or imagine.
I’m grateful I made it out. And I’m really grateful that I was taken care of by those two great people that helped me get through it.
13. the big joke
I returned to work as soon as I could. I guess they let me do that, even though I definitely had missed a few days (probably a week) from that last big round.
Well, apparently, after I had been back for a while, everybody at the job had thought it would be a good time to ‘team up’ for a great big practical joke. Maybe they all thought it would ‘cheer me up’ or something.
I remember thinking that sometimes a joke is a good idea, but sometimes it can get a little tacky, especially when somebody like me has been having seizures–I mean I come on.
It seemed like any other day. As usual, one of the first things I did when I came in was head on up to my office, of course. Up there, I had a desk-calendar that I used to remind me about orders and errands, and I needed to have a look at it to make sure I was handling the business-end of stuff. After all, I was the Food Service Director.
Somebody had moved it. Forward.
And they were slick. First of all, from what I knew, I had the only key to my office—so either they were admin, or they knew how to pick locks.
Next, I noticed that they’d also moved my cute little picture calendar that was pinned up on the wall with a thumbtack. I don’t know what all the pictures were for each month, but I definitely knew it had been flipped to the next month, because the picture was no longer like a puppy or whatever it had been, and it was now a duck or something.
Then I headed downstairs to the kitchen. It was mid-day, so there was nobody eating. I said howdy to whoever it was that was cooking and did my usual walk over to the shelf by the music equipment. I think I had another small calendar there, something the cooks could jot notes on to remind me to order stuff. Real funny–it was also moved.
So, I picked up the prep-list clipboard. I had a template list set up with a spot for all of the regular prep work items, and today’s had been made by whoever had gotten there before me. They were in on the joke too; the date in the upper right corner told me that.
I’m not sure who all I said what to and in what order, but I know I quickly ended up talking to my boss over on the side—that easy-going guy I talked about. I guess I thought he had to have organized the whole practical-joke-thing, because he might have had keys to my office. He was not only in on it, but he was really playing along.
I remember thinking: “why this particular joke? I’m not getting the punchline here…”.
I knew what day it was, and it was not April 1st, so the joke wasn’t an April-fool’s gag.
And I basically told my boss “ha-ha-very-funny-whatever, but I get it”, but I knew what day it was, I knew what I had done yesterday, who I had worked with, what food had been served, what I had ordered and from what vendors, and all that regular-kitchen-boss-stuff.
Which apparently was like, six weeks or so before this conversation.
And that’s what amnesia is like. I knew exactly what I did yesterday. I knew who I had talked to and seen and called and whatever stuff about my music that I was working on and you name it. The thing was, my seizures had caused complete erasure of everything between the real ‘now’, and the ‘then’ that I thought it really actually was.
It’s like a big joke that the rest of the whole world got together with each other to surprise you with; the most creepy, giant practical joke.
You know what day it is, dammit, and you were there yesterday and you’re here today—but apparently knowing that is actually taking something for granted, that I no longer could.
I remember realizing that it was not a joke. Or at least, I had to play along with it a little.
The boss, as I mentioned before, did have some psychology knowledge, and I think he was patient with me and kept things cool, but they just had to tell me it was time to for me to go. And I knew he was right.
My records show that I first became ‘officially disabled’ in mid-April of 2004.
14. the wallet
First off, I’ll start this subject off by agreeing with just about every other ‘official’ medical first-aid resource–I go along with the ‘rule of thumb’ on this advice—DO NOT put ANYTHING in someone’s mouth if they are having a seizure. That includes your thumbs—if you want to keep them attached, that is.
My wallet has been a personal development that I have used to improve more rapidly, and shorten my recovery time following episodes by preventing myself from biting my tongue and cheeks, and damaging my teeth when I seize. With repetition, I eventually figured out that for me (at least), the risks are outweighed by the benefits of using my ‘scientifically engineered’ man-purse to prevent as much injury to my mouth as possible.
Even when I’ve gone for awhile without seizures, I still carry that thing with me just about everywhere I go, and I keep the Velcro I stuck on it working and intact–just to be ready. Of course, I never like planning to have another seizure, but I know well that I may still end up being glad I got it into place–like so many other times.
The wallet itself kind of represents the sad devolution I felt as I had to hang up the keys, and move from motor-driven magic to pedaling and sweating to get wherever I was going.
I’ve also worn the same ‘biker-type’ leather jacket for years, and I’ve kept wearing it, even after I had to stop riding, because I’ve realized that it has protected me during seizures in the same ways it would have if I had ever crashed on a motorcycle–I’m sure that it’s prevented ‘road rash’ and other light injuries more than once already during episodes. Also, I know it would protect me somewhat from the elements if I was outside and lost consciousness. And it’s full of pockets, most of which zip, so it has been the faithful stash-place of my emergency and back-up medications.
So, keeping the biker-wallet and leather jacket have made sense, even if I feel like a ‘sidewalk commando’ sometimes by continuing to wear them, even though I’m not tearing up the highways and back-roads anymore.
Years back, way before I ever knew I had epilepsy, I first got the chain-equipped black leather wallet because I knew it would last a while, and because I knew that I could use the clip around my belt to make sure that if I ever did ‘space out’ and leave it outside of my back pocket after I got into it, it would be sure to ‘follow me’.
Eventually though, I began to ask myself what I could do to make recovering from seizures go a little easier.
See, to me, these things were usually like feeling the spell-part, then recovering from whatever had happened. When I came back to consciousness, I might have pain anywhere in my body from whatever had happened during the seizure, but I almost always would have some kinds of mouth injuries, and these were often some of the most painful parts of recovering.
I’d end up on liquid diets sometimes because I was so torn up in the mouth, and even swallowing smoothie-consistency stuff hurt like hell. I’d know I needed the nutrition, so I could get back on my feet, but I was fighting so much pain sometimes (just to consume anything), that I knew that the amount of time it took me to bounce back from episodes was being dragged out. Also, not being able to eat made it more likely I’d have even more seizures, especially once I found out that I was having them in ‘clusters’.
I also had begun to form another theory—that perhaps when I began biting my tongue during a seizure, I might be contributing to a ‘cycle’ that could make my seizures worsen and last longer. It seemed like maybe, the very reflex that goes ‘ouch’ (and is supposed to tell the brain to stop doing something that is hurting the body) might still be staying somewhat intact, so that when I began feeling the pain from biting my tongue, I might be somehow falling into a ‘loop’ of some kind; sort of going ‘ouch’ and then continuing to spaz more–in part because that pain was triggered but that reflex was being ignored.
As I explained before, there was a time when I was trying to keep my seizures hidden (so I could keep working, driving, insured, medicated, and all that). Somewhere in that stretch of time I flipped out and bit the right side of my tongue really badly. This time, the healing did not go well. I had a little ‘forked’ part of my tongue that began to heal separated from the main part, and when I’d chew and sometimes when I’d talk, I’d accidentally bite it. I didn’t want to get medical help, because it would be obvious that I had seized. Finally, I had to get out a razor blade and cut it off, using Listerine repeatedly to sanitize it as it healed (talk about gross and painful). Of course, tongue tissue doesn’t grow back, so I’m still missing that chunk.
At some point when I felt a seizure start up, I pulled the wallet out of my back pocket and put it into my mouth. I woke up after it was finished and looked over and saw the wallet, which hadn’t stayed in my mouth–but this time (for a change), I had managed to not bite my damn tongue. And while I was still a little beaten up, I could eat food as I recovered, which helped me get back on my feet faster than after I had after other nasty sessions.
The wallet instantly became a symbol to me that was like my leather jacket—a remnant from my glory-days of riding time that almost seemed to mock my situation, yet was just too damn functional for me to consider leaving behind.
As I examined the teeth-marks I had just made in the leather after that seizure (and realized that these marks would have been on my tongue), I started to go into ‘design mode’.
The wallet already had a keyring on one corner which attached to about eight inches of chain, and the chain ended with a ‘fast-clip’ for attaching keys and stuff. Back when I was driving and riding, my keys were always on this clip unless they were in an ignition. Now, the clip usually was just stuck on the belt-loop so I wouldn’t lose the wallet.
I poked a hole in the wallet, on the opposite corner, and installed another keyring. This was the ‘Version 1.0’ of the wallet. Now, if I felt a spell start up, I could lay down and put the wallet in my mouth, and wrap the chain behind by neck, attaching the ‘fast-clip’ to the new key ring. This kept the wallet deep in my mouth, and it did a pretty good job of staying in place through whatever thrashings and wanderings went on during seizures. I began to make sure, more than ever, that this wallet was always with me whenever I went anywhere.
The next phase of my seizure-wallet evolution brought in Velcro. More than once, the wallet had fallen out during seizures because I hadn’t managed to fasten the clip to the keyring before I had lost consciousness. I needed a modification that would be as simple as possible to work, and would not add additional risk of damaging my teeth with metal hardware. I attached a strip of leather to the chain with ‘male’ Velcro glued to it (that’s the scratchier kind), and a strip of ‘female’ Velcro glued across the corresponding end of the wallet. Now, when a spell started up, I could get that wallet in place and stick the Velcro together and I was all set with no metal parts that could get anywhere near my teeth.
Since I first developed the wallet, I’ve had both stretches of time with many seizures, and also a couple of breaks. As I’ve learned, that’s part of what makes my type of epilepsy more unusual—I don’t have episodes as often as more common forms, but when mine happen, they can be really severe and dangerous.
Even when I haven’t had seizures for a while, I still carry that wallet. Sometimes I find myself feeling like those teeth marks on it are like old war-scars that will eventually (hopefully) just be reminders of a time that’s gone by. However, like a veteran that has seen battle firsthand, up-close, and now knows damn well that peace cannot be taken for granted, I know I can’t ever let myself assume I’ll never need it again.
The wallet with the teeth marks has become an ally, and even if it only makes me feel a little more ‘ready’ for episodes, it does give me a little feeling of preparedness, and keeps me in touch every day with how damn lucky I am if I haven’t needed it much lately.
It’s been suggested to me more than once that I should ‘patent’ the wallet-modification. Well, it seems pretty clear that it would have a very limited market, and most of that group has been coached against putting anything in their mouth when they seize (a guideline I do agree with). Unfortunately, medicine has recorded too many instances of worsened injuries caused by a well-meaning person trying to help someone that’s having a seizure by putting something in their mouth that broke, splintered, damaged teeth, contributed to air blockage, you name it–and now, for good reason, first-aid guidelines always clearly state that you should not put anything in the mouth.
For me, this has become a measure of self-protection that I ‘ve learned works for me and has probably helped me maintain some independence. Because it has repeatedly been helpful for me, I will always be glad to discuss it with any other seizure-sufferer who is finding themselves in these horrible states of recovery that I have repeatedly found myself in over time. I would hate to think that this advice would ever have the potential to hurt someone, so it’s not a ‘fix-all’ for everyone who has whatever kind of seizures, but if it can help anyone, I’ll certainly be glad to share the info. Just be careful.
I certainly am not the only person who has ever been impressed by the wallet. Most of the medical pros that I’ve showed it to are instantly curious about it, probably because they have seen the injuries that my wallet could have helped prevent. However, in the name of providing good medical advice, I usually get both validated for figuring out the design, and warned for the dangers of what can happen.
And that’s while I’ll say again—if you’re ever helping someone who’s having a seizure, don’t put anything in their mouth. You may have the best intentions, but you are more likely to harm them than to help. If you think someone might benefit from hearing about my wallet, you can always tell them to check out this story.
During part of my later multi-phased treatment at Stanford, I was interviewed by a reporter from National Public Radio and we discussed the wallet at length. It made ‘national news’ when the story of my ongoing battle with seizures, and the cutting-edge treatments that I was undergoing, were featured in a nine-minute spot on the show Morning Edition on December 9th of 2013. Last time I checked, the interview was still available online in the NPR archives—just go to NPR.org and search ‘Nate Bennett’ if you want to check it out. (Note, the audio version is better, the printed version has been shortened quite a bit.)
So, the wallet got a moment of fame and glory, but to me, it’s still just my teeth-marked old war-buddy that I take wherever I go. Even if I haven’t needed it lately, it still helps me keep from forgetting that I need to keep from losing touch with my own history–from the riding times, on through to the biting times.
Sources Cited:
Bacharach, B. and David, H. (1969). Raindrops Keep Fallin’ On My Head [Song]. [Recorded by B.J. Thomas]. [Single]. Scepter (1969).
King, C. (1971). You’ve Got A Friend [Song]. [Recorded by James Taylor]. On Mudslide Slim and the Blue Horizon [Album]. Warner Brothers (1971).
Selzer, Edward (Executive Producer). (1954-1964). Looney Tunes [TV series]. Warner Bros. cartoons.
Standen, Amy (2013). Epilepsy Patients Help Decode The Brain’s Hidden Signals [Radio Article]. On National Public Radio feature show Morning Edition aired on KQED (2013).
Young, N. (1971). Heart of Gold [Song]. On Harvest [Album]. Reprise Records (1972).