click here to listen while reading if you like!
CHEFILEPTIC
by Nate Bennett
EPISODE 10
Welcome back, listeners and readers of the present and future. As I know I’m very fortunate to know, I’m Nate Bennett. This is the tenth episode of Chefileptic, my autobiographical podcast series.
In this episode I discuss: more wild and crazy stuff I’ve done (during and after seizures), some ‘far-out’ medical testing and prep steps I’ve enjoyed (that most of us have never heard of), getting my wired-up grey matter zapped (on public radio), my second-happiest day, and poof!… appearing from out of nowhere.
If you find this installment advantageous, informative, or just plain entertaining for any reason, and/or it brings to mind some other person who might, let ‘em know about it! I’m posting it for free, but they won’t find it–without thee.
35. the wanderer
I remember that I was told by my main Stanford doctor that what apparently was most dangerous and worrisome about my seizures was not so much the grand-mal phase where I was thrashing around and all (which is more common), but rather the ‘wandering’ part that was noted to last for up to hours on end after a seizure. This was the part where I could really get into trouble, and indeed I had proven that in the past already a few times.
Well, the seizures I had over the next few months sure had some of that going on. I’m lucky I somehow kept working, and I know my history owes some thanks in a number of directions, but during that time I owed it mostly to Amy and Tim Gard. They got to see some weird shit for sure. Not only that, but they helped me keep my act together well enough to keep on working (at least for a while), in spite of me gettin’ all seriously strange on a few occasions.
Unfortunately, it didn’t always happen at home, or when they were with me.
In late April 2013 I had one at work at around 11pm. It started when I was outside, on the loading dock. I’d felt it starting and had gotten the wallet in place and laid down. I don’t know how long I ‘went off’, but somebody eventually found me out there; apparently, I was standing while making what someone described as ‘convulsive motions’. I started my babbling muttering crap and was led inside as an ambulance was called.
My conversation with one of the paramedics is where my memory begins. I recall that I sat inside the dining hall office talking to him for a few minutes as he made sure I had picked up my marbles. I may not be correct, but I think he told me that he was some kind of ‘boss’ of his department. I do know that I asked him flat-out if they had been keeping a ‘pin in the map’ of campus (in other words keeping track of where I was working), and he had just given me a very telling smile. I couldn’t blame them one bit, and even if they weren’t supposed to be doing that, I was still kind of glad that they were.
Once he felt like I could finish the shift, he let me ‘officially refuse’ service, which meant no ride to the ER in the ambulance.
I got back to work. The whole thing lasted like fifteen or twenty minutes or so.
I had another grand mal a couple of weeks later, which started during a nap, so I didn’t get the wallet in place and bit my tongue again. I’m lucky to have any of it left.
A couple of weeks later, I guess it got crazy for my roommate Tim (I think Amy was at work at the time). I started convulsing in my bed, and when I came out of it I had bitten the inside of my mouth a little, but then I got bizarre… later on Tim told me that I had come out of my room and wandered around our house in a dazed state for like a half of an hour, turning lights on and off, raising and lowering window blinds, and turning my music gear on and off, before I finally came fully back to this world.
He hadn’t tried to communicate with me while I did this stuff, but he had waited until I was fully conscious, and then told me what he’d observed.
36. more tests
In June, Amy took me back to Stanford for the big MRI and the infamous Wada Test, which is used to sort of ‘shut down’ one hemisphere of the brain to determine ‘which half is doing what’—info that helps doctors determine if a patient is a candidate for surgery.
We checked into a nearby hotel in the afternoon, because the MRI was at 5pm and the Wada Test was the next morning at 6am. After we’d checked in, a spell started up, and Amy said that it lasted about one minute, followed by convulsions that lasted about a minute and a half (during which I bit my lip). After that I had a ‘confused’ period lasting about seven minutes. We managed to get to the MRI just in time, I guess (I don’t remember it now).
A similar thing happened before the Wada Test the next morning.
I know from my journal that this gig involved routing a device of some kind into my groin area and somehow sending it all the way up into the left side of my brain—I still don’t get how that works, but I think I might be glad I don’t remember it so well.
Anyhow, this would then allow the doctors to be able to put the left half of my brain ‘to sleep’ while leaving the right half ‘awake’. During it, they’d ask me questions and have me perform various tasks, which might have enabled them to confirm the working theory they had going on about whether or not I’d been using the left half at all.
Apparently, this test could allow the doctors more ‘freedom’ in the operations being considered by demonstrating whether or not I would ‘miss’ the left side if it were to ‘go away’. The results from Phase 1 had shown that my seizures were coming from the left side, and now the possibility of taking some action in that side of the arena was being considered.
As I was prepped for the test, I seized. The good thing was that I was surrounded by people who knew just what to do about it, but the bad thing was that they almost decided not to do the test that day, and I would’ve had to re-schedule. I really wanted to get it done if possible, so after a couple hours of waiting to see if I had more seizures, they went ahead with it.
I know it must have been an interesting experience, but again my memory of it is cloudy at best.
In my journal I wrote that I was at some point lying on my back with both of my arms in the air, and they had me count down as they started knocking out the left side. My right arm fell as my left arm stayed up, which makes sense because the hemispheres of our brains control the opposing sides of our bodies.
Next, I was asked some memory-testing questions, and after a short time I was allowed to fully awake. I was then asked details about the questions I had been asked while (half) unconscious. I did recall a little bit, but for the most part my recollection was poor.
I then had to discuss the results with Dr. Graber to decide how we would be proceeding. When we met again, he explained what-was-what to me and Amy.
The mega-powered MRI had yielded some results that were apparently not visible in the previous, lower-power images. Turns out I have some tiny little lesions (like scars) in the temporal lobe of the left side of my brain. This is an area that is usually involved in the retention of visual memories, processing sensory input, comprehending language, storing new memories, emotions, and deriving meanings.
There were also a few other ‘subtle differences’ that were noted between my brain and normal anatomy.
Apparently, for one thing, my right hemisphere is actually a tiny bit larger than the left. The working theory was that my right side may have had to ‘learn’ to do stuff that’s normally handled by the left, and it had gotten larger over time, in the way that having a weak leg or arm would cause it’s opposite to strengthen in order to compensate. The right side is largely responsible for creative activity, and it was proposed that this might be why I’d spent so much of my life playing and writing music.
So maybe music, for me, is more like a symptom than a gift.
This was kind of a harsh realization for me, but I never had made any money from my music, which probably would have taken more left-side math-and-business-power, right?
Another proposition was that my particular left brain, or at least part of it, may not have been doing anything at all for me–and I might not even miss it if it was gone. It was apparently a possibility that all it was doing for me was ‘bumming around’ most of the time and then ‘flipping out’ every now and then. Getting to the bottom of that question was what the Wada test had been all about.
It was however determined by the Wada Test that I, like most people, do use the left area (including the region around my lesions) for memory. What this meant was that they couldn’t just go in there ‘willy-nilly’ and take out whatever part of the left side that they wanted to, without real heavy consequences for me.
As of that point, we had zeroed in on the area of my brain that was causing my problem, and knew it was coming from somewhere in a region about the size of a golf-ball. The next step was all about narrowing the ‘target’ area even further—and now I would have to progress to Phase 2.
Eleven days after those tests, Amy awoke to my squeezing her as I convulsed for several minutes at around 5am. When I stopped, she got up and had me take an emergency dose of medication. I had another as I woke up at around 10:30am and began vomiting and seizing and was way out of it as I woke up, so I called out for my shift that night. I ended up getting a bit of a fever and puking all day, and I think I do remember some of that round; it was one of those affairs where I had my head stuck in-between the toilet and the wall and I kept smacking it when I’d try to get up to puke more. Yup, sure enough, it would have been a bad night to work.
I felt better the next day though, so back to work I went.
Ten days or so after that session I had one at work, but got away with it. The journal shows that on July 3rd at around 6pm (which tends to be a good’n busy time in the food business), I’d felt an aura beginning. I asked another manager to cover my station and went into our office alone, laid down, put my wallet in my mouth, and had a grand mal. After several minutes of disorientation, I returned to whatever my station was, and finished my shift. Total elapsed time of that event was around ten minutes.
The journal shows seizures on 7/8 and 7/24 with minimal notes. Looks like I lived.
On 7/27 I had a grand mal of unknown length while sleeping (alone). I woke up in the morning with my tongue bitten. I was confused and thought I was late for work, so I quickly got dressed and shaved, and then called Amy and left her a voicemail asking if she was coming to give me a ride–then I realized I was off that day. Lucky thing.
A similar situation was noted on 8/15. When I woke up, Amy told me I had seized in my sleep (again). My tongue was slightly bitten. As I got out of bed, I began to vomit ‘til the point of dry-heaving. I eventually managed to keep some meds down, so I chose to go to work anyways. Throughout the entire shift I had terrible hiccups and a headache, but somehow I slid on through all those little inconveniences and into the next phase.
37. Stanford’s study, Phase 2
On August 27th of 2013, Amy took me back on over to Stanford-land. The party started right with yet another MRI.
Now it was time for the bilateral craniotomy.
The first round of this procedure involved drilling a few holes in my skull, into which little dealy-bobs called ‘fiducials’ were implanted. Fiducials are small metal hardware pieces with a hole in the middle that would be used to run sensor-wires through.
The wires could be used to help the doctors see and record seizure activity up close, and also could be used for testing that would involve directing electrical current between them while asking me to remember things and speak and perform whatever other basic tasks. This process would help to better understand what I was doing with which parts of my brain.
The wires also could be used to trigger seizures intentionally, by finding and exciting the right area, hopefully helping the doctors zero in even closer to the ‘problem area’ where seizures begin (called the seizure focus).
I was kept awake for the first part of this procedure. It involved making the holes in my skull with scraping-type tools, using local anesthetics for a sort of dental-work-like experience (at least as far as the scraping-sound part went). Once the hardware was in place, I was wrapped up around the top of my skull with a ‘turban’ of gauze until the next day.
Apparently there had been some back-and-forth going on during the surgery, and the doctors on my team had decided to move up from the expected five fiducial locations to seven of them.
The next day was when the wires were installed. For that part I was knocked out entirely.
I came out of the general anesthesia after the wires were in place. I have to be honest; I don’t remember this part. When my memory started working, I was in the room where I’d be staying while being studied. I had on another turban-type gauze hat, but now there was a big ol’ hose of wires coming out of it that ran over to the machinery used to record the precious data.
I was not only well secured (strapped-down and still pretty out-of-it), but at that point I had my first experience finding out what a catheter feels like–and I have to say I that while I do see why they’re needed sometimes, I was damn glad it was able to be removed the next day because having that tubing up inside me in that particular place was, well, kinda freaky.
For that round, I had my arms tied to the rails of the bed so I couldn’t reach up any higher than maybe being able to just touch the tip of my nose with my fingers. The reason for this was that during a seizure, I might’ve reached up and ripped the wires out of my head with my hands. That might sound crazy, but I definitely knew it was a real possibility, when I thought back to how I’d once ripped out that I.V. in the emergency room… My bro had seen that one. He told me that I sort of woke up, looked at him, looked down at the I.V. in my arm, and jerked it out–causing me to bleed all over the floor.
Thankfully though, I didn’t end up pulling any of the wires out of my head (at least not during that phase).
At that point, I also had to have an I.V. on my left arm (the whole time) to make it easy for the team to hit me with whatever drugs quickly when they were needed.
I also had to wear the same back brace that I was suited up with during the previous phase for the entire time, as it was hoped it might possibly limit me from having such nasty injuries to my back this time around.
As with my previous stay at Stanford that spring, the goal was to observe and record some seizures. And as before, the methods used to do this began with taking me off of my medication. Just like that previous time, I didn’t have the seizures right away, so I had to begin trying other methods to set me off, like skipping meals, staying up all night, and drinking beer (again, warm cans of Bud).
It was so weird, because I’d been having them pretty often up ‘til then, but now it just didn’t want to happen. I was told to ‘hang in there’ and to be a “patient patient”, so I kept on doing that… after all, I didn’t have much choice. I sure wasn’t going to leave without doing what I went there to do.
Well, the staff did whatever they could to keep me as comfortable as possible, but damn, being in a hospital bed in basically one strapped-in position for that long was a new kind of test for me. I definitely realized that I have to have some serious respect for anyone in our world that lives any amount of their life stuck in a bed.
For me, what made it really tough was that whole ‘one-position’ aspect. To protect all the wires that were directly embedded into my skull, as well as the many others connected to external sensors that were being recorded, I had to stay seated looking forward while awake, or lying flat on my back while asleep. I normally toss and turn a little a bit when I sleep, and for this procedure, turning my head or lying on my side was not an option. Constantly wearing that back brace was also part of that whole immobility situation as well.
A week after being strapped in and all kinds of plugged in, I still hadn’t flipped out. It was like my patience and persistence mechanisms were also being tested somehow.
Around a week before Phase 2 started, I’d gotten inspired to craft an email to the general community of neuroscientists at Stanford, offering myself as a research opportunity to anybody who might be studying anything about the brain. I knew I was going to have probes imbedded in my head, and knowing what I did about music and electronics, I figured there might be some opportunity to break some ground, you know? Maybe even see if I could somehow make some music come right out of my head or something… why not?
Anyhow, I’d been replied back to by a Dr. Josef Parvizi. As I came to find out, he’s a big deal on the neuroscience research end of things at Stanford. First thing he did was kind of put me in my place a little about the hows-and-whats of ‘properly’ setting up research with patients, but when we discussed that I was totally open with being used for research and testing while having wires implanted in my brain, I think he knew there might be something interesting to check out–whether it would be music-related or not.
It appeared that I might be useful for a variety of tests while being wired up that could help further the understanding of how the brain works (like what parts do what, etc.). We discussed that I may even be asked to both recite and improvise music at some point–as I’d come to understand, Stanford had been working on using music as a way to ‘map’ the brain, so data collected from my stay could end up being useful to this and any other number of working projects in the field of neurology. Pretty exciting.
Well, during that stay I got to meet several groups of scientists that tested me in several ways while also observing and recording my data, which was pretty cool—it broke up the monotony a bit, and brought some interesting conversation to my scene.
I was briefly unchained for a short time during one of these visits, and I played a few songs on my guitar for a group of students so that my brain activity could be watched and recorded during both reciting and improvising music. I had a little battery-powered amplifier with me, and although I hadn’t been playing and singing much recently around that time, I guess I could have sounded worse, considering the circumstances.
Also prior to Phase 2, I had agreed to be interviewed by Public Radio KQED, as they had apparently been looking for a case like mine to follow. Just before the big power-MRI I had back in June, I’d met with their reporter Amy Standen. She’d recorded our conversation, and we had agreed that she would be ‘observing’ during the remaining studies and treatments at Stanford. I considered that to be sort of like offering to be used for research—it could be a positive thing to do, because it could potentially contribute to the realm of public awareness about epilepsy.
When I first had agreed to allow Ms. Standen to follow my story, I for whatever reason, thought that she was doing a piece about epilepsy for which she’d be interviewing a number of people, but as it turned out she was following my case specifically. She told me after the second phase of my study that the story she did would be presented on the National Public Radio nation-wide show “Morning Edition”, and that it would be up to 9 minutes long.
Anyways, after having that long stretch strapped in a bed without seizures, it was decided that the time had come to try to ‘kick-start’ a seizure by running tiny amounts of electricity between different points on the probe-wires. See, a big part of the results we were looking to find would come out of ‘triangulating’ from the data that was being constantly collected from the implanted sensors. This whole thing was about figuring out just where what part of my brain was starting the seizures, so we could find out if I would be able to be operated on, or if any of the new gadgets being employed to control seizures might work for me.
I was ready to try just about anything to make those damn things stop. And try we did. Actually, we did more than try.
On the morning of September 3rd, Dr. Parvizi came into my room along with several students.
Also, Ms. Standen from NPR showed up, along with an assistant, to observe what was about to happen.
Dr. Parvizi then explained to the group what was going to be done. He was assisted by Dr. George Nune, a Fellow at the Stanford Epilepsy Center, and with them they had a battery that was about the size used by a mid-sized motorcycle.
The plan was to run very small amounts of electricity between the different wires in my brain to see if a seizure could be triggered. If one could be, this would hopefully help identify the ‘bad spot in the tomato’.
There were not only seven wires inside my head, but some also had multiple contacts on them, so there were numerous paths that could be tested in this way.
They began zapping my brain, and asking me if I could sense any difference when they did. Of course, this included ‘placebo testing’ for controlling the experiment, and also for comparison along the way.
What they wanted to find was a way to trigger that sensation I have when a seizure begins, so this was what I was really watching out for. At first, I thought I noticed something (and actually was made to stutter a little), but then nothing they did was detectable. However, right when we neared the end of the test, and they had tried almost all of the contacts, it happened.
The recorded audio from this whole bit was used in the NPR story. The sensation I got was not like my usual one, but close enough—as soon as it started, I began to have trouble talking, and then I went into a grand mal. As I understand, the crew of observers was cleared from the room and I was knocked out with some Ativan.
When I was asked about the sensation later by Dr. Graber, I told him that the difference between it and my usual sensation would be like comparing cinnamon to nutmeg—they are similar but still noticeably different. I am not sure entirely what info was gleaned from this test, and how exactly it played into the final decision-making about whether or not I should have surgery, but I understand that the data collected could be good stuff for study, so I was glad to put on the show, ya know? Besides, I had already been there a few long days, and I was good and ready to do my thing for sure.
Well, that seizure wasn’t enough. They needed more to get whatever they needed, so I wasn’t done yet.
It was enough, though, to tear my back up pretty good in spite of the brace. I was in a pretty large amount of pain, so they started having me go back and forth between Vicodin and Morphine (yeah, I know it sounds like fun but the pain part of it kind of killed any potential ‘party’ aspect). It was weird, because I was now off my regular meds, on pain killers, and we were still waiting for another seizure so I was doing the sleep-and-food-deprivation along with drinking some beer… it was like, all the stuff I wouldn’t normally do, because I wouldn’t want to set off seizures, all-in-one.
During my stays at Stanford I met way too many people to be able to remember all of their names–and believe me, I’d like to thank all of them directly but my memory just ain’t all that no more… but I know they all understand.
Apparently, my case was discussed in a conference by a number of doctors at Stanford during my stay, and after this discussion several different doctors dropped by and introduced themselves. It was nice to meet these doctors; I understand that there were between 20 and 25 in the meeting, and one can only assume that my case benefited from having all of this collective consideration and insight. Of course, not all of the doctors that were part of the discussion visited me, but I was caught off-guard by something I heard several times from some of the doctors: they made a point to tell me that they were surprised that I was still working.
At first, this was simply flattering to me—they were expressing that they recognized what kinds of difficulties I must have had in this constant effort. After I had a little chance to consider some of the words I had heard in these conversations, though, I found another element that seemed to be ‘in the air’—the ‘head’s up’ that I might not be working much longer, and that I’d better get myself ready to face that reality.
Well, I have to say that I appreciated any and all the good intentions that motivated these doctors to come and say howdy to me, but the truth was that I knew very well I’d been living on my ‘thin ice’ for quite a while. I was already very aware that I could ‘fall through’ at any time. The thing always had been that if I could work, I’d do it for as long as I possibly could–and anyone that knows me well knows that. I’m not looking for a free ride, but I also didn’t want to end up hurting anybody.
Anyways I finally flipped out on Thursday September 5th at 7am. I bit my tongue a little, and I guess it was pretty dramatic (five or seven minutes long with about 1.5 hours of unconsciousness afterwards), but for whatever reason, I did not produce whatever data that was desired because the doctors asked if I could stay and try to have at least one more before they took out the wires. I agreed, but said that if I didn’t have one by that Saturday, I’d have to go. They said they understood, and then my stay did continue until Saturday when I finally got to call it done, even though for some reason I hadn’t been able to have another seizure for them to dig on.
The day before I left, Dr. Parvizi came to talk with me. He explained that the procedure had not been able to narrow down the problem-area to a small enough region to consider removing, and he basically explained that if they removed the entire area that was suspected to be the problem-causing part, I would lose too much memory and may not be able to function.
He explained that I may end up being able to use some of the new methods or devices that were being developed and studied within a couple of years. Apparently, the biggest challenge for the new implanted ‘pace-maker’-like devices is that the doctors have to know exactly where to put the things in your noggin, which might keep me ineligible for such approaches, but we would have to “wait and see”.
I wasn’t going to start holding my breath. At that point, it seemed pretty clear that working with whatever I had left to get by would continue to be the name of my game.
So, I had come for answers and had gotten at least some. Phase 2 had to happen, and even if I didn’t ever end up being a candidate for surgery, I at least had the peace of mind of knowing I tried to work with all that was in my reach to keep myself alive and working.
Originally, the plan had been that if all went well, I would be sent home after the Phase 2 adventure to heal up for at least a week and a half, and then I’d be able to go back and have some area of my brain removed. If that happened, it would take one to three months to recover, and there would be about an 85% chance that I would stop having seizures–but not without a tradeoff.
Dr. Graber had leveled with me on this: if I kept going without surgery, I would keep having seizures, which would cause more and more damage to my brain. Also, any number of bad things could happen to me during them, which meant that the odds were that my life would be shortened by them.
Now, if I did have surgery on this area, I would be getting my short-term memory damaged similarly to how I had experienced after many of my seizures, but this would happen all at once. So, I would likely live longer and be happier, but I’d be an even-worse ‘airhead’ after having the surgery. However, this would leave open the possibility that the right side might ‘perk up’ in some ways after the trouble-causing area in the left side had been removed. Also, the younger I had a surgery like this, the better my odds were of developing in whatever ways I’d need to manage myself.
However, the Phase 2 study at Stanford caused my doctors to decide that I was not a candidate for surgery.
Apparently, the amount of my brain that could possibly be responsible for my seizures is just too much to have taken out, because I depend on these same areas for ‘regular life-stuff’, in spite of the episodes. About 15% of us that go through the processes I’d just completed are considered to be ineligible for surgery, and as it turned out, I was in that particular group.
Of course, I thought about my ability to work immediately. At least I wouldn’t have to miss all that work-time while recovering from a big surgery for one to three months. I’d never used this much sick time in all my working history, and I was ready to get back to focusing on my old routine of ‘continue and conceal’… Only thing was, there was now a whole new twist in my life—I was in love. I had to consider her in every decision. Before, my life was simply a crazy experiment that might get cut short at any moment, but now I had something real going on, and more than ever before, I really wanted to stick around.
I left Stanford after the second phase of the study on Saturday, September 7th, 2013.
38. the biggest test
My next journaled seizure was a little over a month later on October 13th. It occurred during early morning sleep and was about five minutes long. Amy said it was the worst one she had ever seen, including lots of frothing at the mouth and thrashing and stuff.
I insisted on working that day regardless. While I was at work I realized that my tongue was bitten, and then realized that I had had a seizure, but for some reason I’d thought it had happened on the morning of the previous day, until Amy and I discussed it later, after work.
I had the next one a week later. I woke in the morning with my tongue bitten, and there was a fair amount of blood soaked into my pillow. Luckily it was not a work-day.
Eight days later I recorded four grand mals, which occurred between super nasty vomiting and dry-heaving that had lasted almost the entire day. I wasn’t sure what had caused the vomiting, because nobody else in my world that I knew of was sick at the time, so I’d reasoned that I might have gotten some food poisoning. My tongue was very chewed up once again, along both sides.
On November 13th I had another grand mal, again during early morning sleep, during which I had convulsed for about three minutes. Amy and Tim told me later that following my convulsions there was a post-ictal phase that lasted something like twenty minutes, during which time I did not speak. Apparently, I had first tried to use Amy’s vest as a pair of pants before I finally got frustrated, and then I’d wandered around the house behaving in bizarre ways (though I had no memory of any of it afterwards). During that wandering, I also had tried to pry open a wall socket with a butter knife and then began throwing items into the toilet and thus I had to be ‘controlled’.
This was the first time Amy told me she had cried from her worry and fear (she’s pretty tough and strong, in case you hadn’t realized). I eventually took emergency meds. We were beginning to wonder if this medication was causing me to vomit, because after I ‘came back to Earth’ I again began vomiting, and I could not even keep down water which I projectile-puked repeatedly.
I then went to work, because apparently, I was part of an important ‘panel’ interviewing a potential new employee that day–but I vomited again, and had to go home.
On November 29th I went off again in the early morning, but this one was pretty short. It was the day after Thanksgiving; I had (of course) eaten a ton as Amy and I celebrated the holiday with some of my aunts and uncles up in Sonoma, about two or three hours north of Santa Cruz. I guess I had forgotten to take my usual round of meds until I was several hours late. Amy and I had stayed in a hotel on our way home after the big dinner, and I’d fallen asleep as she drove.
The seizure happened in the hotel room at about 2:30am. Amy said it was very short and included ‘automatism’ (which is involuntary movement) in my left arm, which made a fist and jerked around. I was facing away from her in bed, and she said that when she ‘spooned’ me gently from behind I immediately ceased seizing, took a deep breath and my guts made a loud noise. As this seizure was so short, Amy had decided not to administer the emergency medication; we had decided recently that we would only use it for large episodes because we thought it might cause me to barf, so she just continued to observe me to make sure I didn’t seize again.
On December 12th I had a ‘complex/partial’ seizure, again during sleep in the early morning. I did not fully convulse but appeared to awaken, and then be lost in a daze while I was silent and staring.
Then, on New Year’s Eve I had another similar episode, which happened as I awoke in the early morning. As with the one that had happened a couple weeks before, I didn’t fully convulse but I appeared again to be awake while in a daze, silent and staring—only this time it also included about thirty seconds worth of ‘automatism’ while my right arm stuck out involuntarily.
I’m really glad that one didn’t mess me up too much. It was a big day for me, one of the most important in my whole life. Amy and I went up to San Francisco to celebrate our one-year anniversary since we had gotten together. We shopped around in Chinatown, and during our day together in the city, I asked her to marry me.
Leading up to this, I’d gone back and forth in my mind over and over. I knew how much we loved each other, but I did not want to leave her behind in this life, and I really did not want to ever cause her harm–even if it was involuntary.
My future looked so unstable—the best doctors I could ever hope to be treated by had said “sorry we can’t fix you”, and I felt my job could kick me to the curb at any moment. Most of my saved-up money was gone, after all of that traveling and co-paying and treatment-related spending, so I didn’t even have enough money to get her a decent engagement ring. How could I be so selfish to even consider asking her to marry me? If I really did love her, wouldn’t I end our relationship asap so she might be able to find another nice guy before her time in life’s game ended?
The thing was, she had reassured me over and over that this was meant to be, and even if we only had a short time together in this world, she would want to spend it with me.
I had done such a good job staying isolated until that point—would God forgive my selfishness? But then again, hadn’t God brought us together? Was this another test, maybe even the biggest and most important test I had ever faced?
Or, was I enabled by her, and watched over by her, which would keep me on-track so that we could have as much time as possible together?
It was heavy-duty decision-making time. I remember I had talked to my Mom and she had assured me that I would be doing right by Amy to marry her, even if I ‘kicked the bucket’ right away, because it was clear that this was what Amy wanted too, and love comes with no guarantees. Well, ‘Mother knows best’, and I am still so glad that we spoke, and I had been reassured by her.
So, even though I didn’t have a ring, I offered my forever to Amy and she said yes. We tied a simple piece of twine between our ring fingers as I proposed to her in front of one of San Fran’s beautiful old churches.
A short time later, my Aunt Pat up in Sonoma got the news, and decided to send us the ring that my grandmother had worn, so Amy wouldn’t have to use some other cheap substitute to show the world she was now committed to me. Amy was clearly now part of our family.
Ten days after our engagement I had another series of grand mals, exact number unknown. I had begun to notice strep-like symptoms two nights prior, and had awoken that morning with fever and vomiting which turned into dry-heaving and then, of course, the seizures started up. I had tried to take my usual medications twice, but I couldn’t keep anything in my guts without puking immediately, and I had seen the pills I took hit the toilet water twice before I’d given up on that effort.
I had two more grand mals the next morning, again as I awoke. Amy had tried to offer my emergency medication but apparently, I had refused to take it. I did not remember any of this, and we then decided to ask Dr. Bhattacharya how to deal with this situation. My tongue was bitten very badly from this round and it took at least ten days to fully heal up so I could eat normally.
I had been keeping Dr. Bhattacharya updated regularly during all of these seizures. We then agreed to have a meeting to discuss how best to proceed. I remember that I had asked him “you know that heavy shot they hit me with when I get to the emergency room that knocks me out? I want that.” I knew that Amy might be able to administer the heavy meds now that we were together all the time, and I knew that I had refused to take pills in states of partial-consciousness, so I wanted to enable her with a tool that could help us both. He then prescribed Diastat (diazepam rectal gel)–an anal injection kit that Amy could slide up my back door so she could hit me with a big dose of knock-out. Now things was really gettin’ kinky up in here.
Between Stanford and my local neurologist, I also had the amount of meds I was taking ‘adjusted’ (meaning raised) somewhere along the way, and it seemed briefly like I might be getting some kind of positive results. I was still having grand mals about once a month, but it now seemed like they would mostly happen in my sleep or as I was waking up, so most of the time I could basically put myself back together in time to make it to my evening shift, which started around 4pm.
It still was not a perfect scenario. I’ve always described this situation to others as that whenever I find a combo of meds and routine that seems to be working I try to act like I’m walking with a glass of water balanced on top of my head–taking each step nice and easy, and keeping whatever I’m doing that seems to be working just going on. Nice and easy.
Bummer is, whenever a combo of medication or routine adjustments seems to work, it just doesn’t seem to keep on working.
39. making appearance
I know I had at least a seizure per month for the next few months according to my journal, but I’m not sure I really got them all written down.
For one thing, I don’t see any notes in the journal about the ‘second-half-day-at-work’ thing. I remember it though, or more like I remember the part about how I didn’t remember. See, at some point in this stretch, I magically ‘appeared’ at work.
What I don’t mean is that I showed up to work my shift. What I mean is, I ‘appeared’. Like, as in, out of nowhere. Like as in ‘poof!’ magic-type-stuff.
And there I was! Sitting at the desk in the office. Didn’t know how I’d gotten there, didn’t know how long I’d been there, didn’t know nuttin’ about nuttin’. Just all of the sudden, POOF! … there I was.
I played it real cool. Looked around, and peeped out at the cash register and service areas. It was dark outside—ok, that was a first tip; time of day was after sunset.
Next, the computer screen was in front of me. It appeared to be off, as if the computer had fallen asleep from lack of activity. That was the next clue—I had either just entered the office, or I had been sitting there for a pretty long time without using the computer. The door of the office was shut, so that was possible.
I jiggled the mouse to ‘wake up’ the machine, and I got the time and date stuff. Now I knew that I was about half-way through my usual shift. I gradually put together what kind of work I had been doing by looking at things in the office like clipboards and post-its and whatever else, but I could not get the first half of the shift back.
I knew that regardless how long I had been in the office before I ‘appeared’ there, by then I was probably being missed, so I picked up a clipboard and headed back out onto the floor. The rest of the shift ran fine.
Thing was, as a manager, I knew that whatever customer service issues, equipment issues, and discipline matters I had been dealing with before I ‘arrived’ were all ‘in-play’ and now I could not recall what the fuck I was supposedly managing at all.
This wasn’t the first time I was frustrated with my memory’s quirks, and it wasn’t the first time that I asked myself if I would hire me if I knew I had all this particular kind of drama going on.
It didn’t seem to matter how hard I tried to do a good job and keep the bills paid, or how hard I tried to keep my outlook positive—sometimes this fucking disease made the decisions and then I just had to clean up whatever mess had been made, just like someone would have to clean up if their home was damaged in an earthquake or wrecked by a tornado.
The only time I could apply my strong work ethic or positive attitude reflexes was when I’d hurriedly be trying to sweep up whatever mess had been made while saying “we’ll be right back, folks” to a world that was like an impatient audience that was always threatening to walk out of my show.
So, I don’t have notes about that one day at work, just that freaky memory. I knew it was a forewarning of what was coming.
The journal does show events on January 25th, February 22nd, and March 10th. All of them were grand mals that happened during sleep or just as I woke up.
I bit my tongue during the first two (see, the wallet thing is great and all, but it doesn’t work so good during sleep). On two of those occasions, Amy was present, and had gotten me to take the emergency (oral) meds.
I noted in the journal that after the one in March, I “forgot about the event, then got up, put on pants and a shirt and then realized I was up too early, so I went back to sleep… If (Amy) had not told me later, I would not have known about this seizure at all.” That episode and the mystery-appearance at work thing are both good examples of why I can never expect the seizure journal to be complete, or totally accurate.
Sources Cited:
Standen, A. (Writer, Narrator), (2013, December 9). Epilepsy Patients Help Decode The Brain’s Hidden Signals [news radio story]. Morning Edition, National Public Radio. https://www.npr.org/sections/health-shots/2013/12/09/248999497/epilepsy-patients-help-decode-the-brains-hidden-signals