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CHEFILEPTIC
by Nate Bennett
EPISODE 9
Hey there, every anybody, welcome on back. According to my records, I’m Nate Bennett. This is the ninth episode of Chefileptic, my autobiographical podcast series.
Subjects in this episode include: movin’ on (down), obscurus operandi, fit to be studied, my new hero, and jigsawed recollections.
If, upon consumption, you’ve found the information contained herein to be worthwhile, and/or it makes you think of some other anybody who might, let ‘em know about it! After all, it’s free as can be–with no ads to hear or see.
29. the lonely motel
In January of 2011 I moved into that little matchbox-sized apartment, hoping I might manage to save up some money for a change. The cost of living in the Santa Cruz area was (and still is) nuts (as in very high), and I had found it harder and harder to live there as time went on. After having fed both the well-off end of the financial spectrum, and running the Homeless Center’s kitchen, it seemed increasingly like the options there were to sink or to soar, but just treading water was really a dying art.
This worked out to be a good decision financially for sure. I had the good job at the university still going on, and now I was paying out a lot less per month in rent than I had at other times. I equipped myself with a decent smart phone and a good PC, and paid off my car to build up my credit while I was in the apartment over the next couple years or so.
Looking back, I’ve realized that I actually did get a lot dealt with during the time I was at the apartment, now that I’ve ‘researched’ back through my existing paperwork and old emails and receipts and medical records.
Thing is, since the last round of my studies at Stanford, this still seems to be one of the most erased periods in my memory. I remember most of the ‘basics’ of living there, and I seem to have gotten more of it back over time, but it still seems more like decades ago rather than just a few years back.
I’ve really become disconnected with a lot of what all I was doing, and the plans I was making when I was living there, even though I got really involved in writing for, and starting to record another album, and considered that to be the main reason I’d chosen to move there to begin with.
It was the end unit in a little several-rooms-long former motel building. The units were all small rooms with dinky little bathrooms and kitchens–my room was 11 by 13 feet.
I’d decided to go all ‘minimalist’ at that point. I got rid of whatever furniture I had, besides a collapsible kitchen table Larry and Amanda had given me along with a couple of wooden chairs, which I then set my computer up on. I built the room into a crammed little home-studio, and put two big PA speakers that I kept face down end-to-end lengthwise in front of the window with a sleeping bag on top of them—at least I’d still be using them, even if it would just be to sleep on.
I crammed music-gear cases up against my new ‘bed’ so that if I ‘went off’ during my sleep, I wouldn’t fall down onto the floor. I knew I’d finally be living alone, so I had to take whatever self-preserving steps I could. Later on, my bed-trap-setup proved to be a wise decision.
When I first moved in, I was driving, having gotten my license back about a year before. I had my car and motorcycle and also still had my bicycle to back them up if needed… Again, I was not going to lose that job if you-know-what started up again.
Now again, my memory’s poor from this time period. I’ve looked over my journal to try to figure out which was what, but I’m pretty sure I had overall done pretty well since the big ordeal at work had gone on two years before in 2009. There’s nothing journaled, and I didn’t go to the ER, that’s all I can say. As far as my notes and records go, it looks like I was doing fairly well during that stretch of time before I’d moved into the hotel.
My health took a hard turn a few months after I started living there. My seizure journal is basically ‘loaded’ from April 2011 on.
Of course, this meant I had to stop driving again. For most of the time I lived there, I couldn’t drive. My vehicles just sat outside my window, waiting for the day. I remember wondering if it was more likely they were giving me something to look forward to, or were just teasing me—either way, at least I knew they were mine, and I held onto them like some kind of symbols of pride and hope.
In the meantime, I of course had to get around on the bicycle, which I stored inside, standing on end behind the door; it wasn’t exactly the greatest neighborhood, and I needed to keep that sucker to get my ass back and forth to the job.
Somewhere during that time period, I learned that sadly, someone else I’d known well through the years was also not doing so well.
As I came to learn, Jon, my old dormie and how’syerdey fellow, was doing real bad about then. His sister had done some poking around and she’d gotten ahold of me to let me know what was up. Jon was in a bad way, in and out of consciousness, stuck in a hospital bed. It was mostly because of alcohol. Apparently, his liver was on its way out, and at some point, there was some ‘partial removal’ stuff going on and he knew he was gonna die pretty soon. It was hard to believe.
It was also hard to hear that apparently Jon was really hoping I’d talk with him soon—he had some dark feelings of some kind or other when it came the subject of me, I guess. His sister explained to me that he’d really feel better if I’d give him a call, and let him know that all was cool between him and I.
I hadn’t had anger towards Jon for a really long time. That band had broken up years before, and I was dealing with monsters that took all my energy for being angry. I hadn’t had any leftovers to share with any number of people I might have used it on who may or may not have deserved it, but it was a bummer to hear that Jon had been burdened by any worry that I was still ‘mad at him.’ I couldn’t let things end for him with that hanging over his head.
So, I called him up. I was really glad I did. It wasn’t a real long talk, but he was lucid and we were able to get it clear–with everything life had handed me, I hadn’t been angry about the whole band-desertion thing in a really long time, and I just wanted him to feel better.
I remember I didn’t say ‘get better’, because his sister had already told me it was definite that this wasn’t going to happen. I just wanted him to have peace, and from what I heard later on, that conversation had meant a lot to him. I would have made it happen much sooner if I had known he was really tripping on about things–I wouldn’t want anybody to hate me or think I hated them, especially someone who had been such a close friend for so long.
I got the news that Jon died from Zoltan on March 12th 2012. It was news that made that lonely old hotel seem even lonelier. I had always thought that I’d see that guy sometime, and we’d just ‘burn one’ and reminisce about the good old ‘deys’, but apparently I’d have to wait a while for that time. I’m just glad we got to talk before he left.
2011 and ‘12 was definitely a rough patch for me. I had managed to keep on working, but my journal shows that I was having seizures once or more per month, with occasional breaks of a couple months. That appears to have kicked off back in April of ‘11, when I got my next big bitch-slap.
I’m pretty sure this was when I got knocked deep into a days-long round of status epilepticus. And, perhaps this was my luckiest experience yet–I’ll never know, I suppose. I lost at least a couple days’ worth of time, according to my notes.
I remember that I’d come in from work and it was the start of my weekend. I wasn’t feeling good. I had started to be able to tell I was getting sick while I was at work, feeling hot and nauseated, but I knew my weekend was coming up and I was almost done, so I had just hung in there through the shift until I could get home and rest and relax.
But I got sicker, and started puking. I had a high fever going, and wrote in my journal notes that at some point I’d measured it at 103. And has often happened over the years, once I started ralphing over and over, it wasn’t long until the seizures came.
Then I skipped some time.
My mind came back on what was the ‘Sunday night’ of my weekend. I woke up on my speaker-bed in my little sleeping pen, and I had not fallen onto the floor, so that plan had worked. Unfortunately, the wallet had fallen out at some point, and I remember seeing it right in front of my face as I was first opening my eyes. I was lying on my side, and my tongue hurt badly. I’d started to get up, but I was hurting pretty much all over after the weekend I had spent convulsing (however much I did).
What was really weird, though, was how my pillow wouldn’t let go of my face.
I knew I needed to get up and start cleaning up whatever amount of mess I was. As I started putting more and more of my reality together, I realized I could maybe still get my shit together in time for this not to have messed with my job. But the damn pillow was stuck to the side of my head, and as I kept trying to launch my first sit-up effort, I had to like, well, peel it off.
And I remember as I finally got into the sitting position, that I had looked back at it, and realized that it had been stuck onto me with coagulated blood; it was like one big scab. Not only that, but it didn’t spring back into shape–it had a perma-dent in it where my head had been. When I picked it up, I realized it was heavy with blood, which had already mostly dried solid.
The apartment had a couple of trashed things going on, but overall had fared pretty well.
I do remember the experience of going into that bathroom pretty well. It had gotten trashed, because apparently, I had done a lot of puking and laying by the toilet in there. I could see dried blood and vomit around the toilet that told me some of the story I was missing. There was also some dried blood-smear handprints on the walls, which I had learned to recognize as fallout evidence from ‘big ones’.
The real shocker came from the mirror.
As I had first walked in, I was looking at the other stuff; the mirror over the sink was on my left. As I turned toward it, I transformed from being totally normal-looking, to hideous. It was like a makeup artist had gotten a hold of me and drew a vertical line right down the middle of my face, and gored-up everything to one side of that line. I was crusted with scabbage, including my hair, which was matted with blood clots. It was one of those ‘horror story’ moments.
Somehow, that time I did manage to get showered up, and stretched out, and cleaned up well enough by worktime the next day. I managed to avoid calling out, since I didn’t have that fever anymore and all.
Always the job first… no problems here, boss.
I ended up seeing my doctor and he made a couple of adjustments to my meds. I tapered off Lamictal (generic name lamotrogine), and replaced it with Vimpat (generic name lacosimide). I also then began using a time-released version of my other medication (carbamezapine) called Carbatrol.
A couple of months later, at the end of May, I had another grand mal. A couple of days later, I went to the DMV and turned in the license, again. I was done driving. It was time to sell the bike and the car, and face the fact that my situation hadn’t really changed, whether I had gotten better for a while or not.
I knew I didn’t want to risk anybody else’s well-being, and I was tired of thinking about it—so no more convenience, no more riding. It was a bitter pill, but I had to swallow it; losing the license five times was enough, I guess. I haven’t driven since then, years ago now.
Somehow though, I do still sometimes get to ride–in dreams. I snap myself awake when I realize it, because I know I’m not supposed to drive. I wonder if I’ll always have those dreams.
Between summer of 2011 and fall of 2012, I had at least thirteen more seizures, according to my journal—which explains why my memory of that period is so ripped up.
I do remember that I was putting a lot of time and energy into my songwriting and music. I wanted to have a mission to keep focused on, and I had plenty to write about.
During that stretch, I managed to make my next album, Next Times, with help from Wendy, Tim Gard, Mike, Brett, and Tim Beutler. I did all the parts that I could in my apartment, and we tracked critical microphone parts up at quilted fish with Mike.
And somehow, I kept that job.
By the time I moved out of the place, I not only had survived, but I had also paid off my debts and saved up a few grand to boot. I knew I needed to get dug out, and set myself up as best as possible while I still could, so I did everything I could think of to minimize what I owned, and what I owed.
It was a good thing I did.
30. getting away with it
During the first couple months of 2013, I was hanging in there at the apartment still, but despite all my efforts (like not smoking weed or drinking and eating good and sleeping about the same amount every day), I’d still flipped out a couple more times. Honestly, I was barely keeping it together.
I had made it through a couple of ‘close calls’ during this stretch of time that made it really obvious that it was only a matter of time before I’d end up ‘getting caught’ at work (again), and that was always on my mind.
I was now good at using my bicycle to get around, and I sold off my vehicles. The thing was, pumping pedals didn’t make me any less likely to have a seizure, and now getting around took more time–making it more likely I’d seize ‘in transit’; I really lucked out three times.
One time, it was getting dark as I was riding down Ocean Street in a let’s just say ‘not the greatest’ stretch. The spell started. I turned into an unlit parking lot full of rental trucks and hid. I guess I had decided to use the wallet, because when I came back it was next to me. And the bike was still with me. I got up and peddled on, glad that nobody’d come across me and had gotten themselves a free bike or wallet.
Pretty much the same thing happened at some point by the county courthouse a few blocks down. This time I was peddling in the daytime on the bike path that runs along the river when the spell started.
It was a beautiful day, and the lawn of the courthouse was lush and green and ‘occupied’ by lots of homeless people with blankets and sleeping bags all over the place. I think it may have been during the wave of ‘sleeping bans’ that Santa Cruz had tried to implement to keep it’s unsightly little homeless issue a bit more ‘out of the public eye’. This round of protesting about that had been going on for a few months by then.
By that time, I had admittedly become more ‘distant’ from homeless issues than I had been at other times in my past. At that point, though, I got right into it, and laid down among the crowd with my bike, and put the wallet in place. I woke up at least twenty minutes later, with the wallet sitting in the grass right by my face. Once again, nobody had taken it, or the bike. Of course, nobody had seemed to notice anything abnormal or called for help either–but I’d kept my stuff at least, so I could keep my game going.
The finale of this stretch happened while I was riding the bus to work. I knew that a manager’s meeting was going on at my unit–so I didn’t want to be late. It was probably about a twenty-five-minute ride up the hill to campus from downtown Santa Cruz where I’d gotten on for the commute, and somewhere along the way, I went off.
Again, I had used the wallet. I remembered what stop to get off at, and I headed over to the picnic table where the other managers had sat down together for the meeting, but I realized that I didn’t have the wallet. I was horrified. I immediately called the metro center, and they contacted the bus driver. Someone had found the wallet, and had returned it anonymously to the driver—without taking anything out of it, including my cash.
It was just one more example of the kind of goodness I knew was worth living for in this world.
By then, I was ready for a change, ready to try something new, because every damn thing I’d tried so far wasn’t the solution, even when it had briefly appeared to be.
31. return to Stanford
By the end of my time in the little apartment, I had realized that I was, for whatever reason, clearly losing ground in the seizure department.
I was in regular contact with my local neurologist, Dr. Bhattacharya, and he’d adjusted my meds to see if we could find the ‘magic combo’ (if possible), but since I kept having more seizures, he referred me back to Stanford for a more heavy-duty analysis.
That’s when I met my new Stanford neurologist Dr. Kevin Graber, Clinical Associate Professor of Neurology and Neurological Sciences. My previous Stanford Neurologist, Dr. Risinger (the guy who had told me they would stop my seizures) had retired from the Stanford scene since I had been there before, which made sense, as it’d been almost a decade.
Dr. Graber and I discussed a proposed ‘3-Phase’ approach to a more in-depth ‘seizure study’ at Stanford. And it did turn out to be fairly ‘in-depth’, actually.
From then on, a ‘team’ of highly specialized doctors would be working together on my case. After the Stanford team had heard my whole story and had considered and discussed my case, I was told that I may be a candidate for surgery. The main reason for me to consider it, they explained, was because my seizures were regular and severe enough that they could kill me (a situation called Sudden Death in Epilepsy, or SUDEP), and surgery could prevent this, as well as possibly lessening or even ending my seizures completely.
I was told that I would need to get a new round of MRI/CT-Scans (that’s pictures) as well as doing a Video-EEG study and having an in-depth Neuropsychology exam first, and that this data would all be put together to see if I could move on to ‘Phase 2’ (where I’d get opened up, and the really exciting stuff would happen).
The first phase would involve bringing me into the hospital, hooking me up to a bunch of external stick-on sensors in my hair and on my body and putting me on a video camera that was always recording, and then watching me seize. They needed to see as much of this data as possible.
I remember when this was being described to me by Dr. Graber—I slipped back into a memory, a time when I had come up the same damn idea, back when my brother was my roomie; It had dawned on me as we sat on the couch that I could easily just ask him to video me as I went off. I mean, duh, right? I shoulda thought of that sooner… Well, my usually completely chillax-mellow brother, who was playing a video game as usual, turned to me and looked me square in the eye and firmly said “No.”. He knew I would be asking him. Not only that, but he did not want me to see it.
Now, years later, this idea was going to happen. Not only would they record video, but the data stream from the sensors would also be recorded and analyzed.
As we discussed the Phase 1 strategy, I learned that I would be strapped into the bed most of the time, to prevent possible injuries. I’d be weaned off of my medication, and possibly sleep and food deprived until action-time.
The goal was to get a ‘good one’, even though it was explained to me how dangerous the seizures were, and that basically just volunteering to seize was in itself a big risk. From my end, just knowing how many I had already made it through and how badly I wanted them to end, I was glad to sign up. Seizures were bound to happen anyways, and for this set I’d be in trained and capable hands.
I made clear on the way into the whole affair that I was fine with being used for research, and studied in whatever way if there was any possibility that any info I could contribute might be able to help somebody else. I ended up being taken up on that offer, turns out.
32. my Lady
I first saw her when I reported for work the first time at my then-new job at the University of California at Santa Cruz, in September of 2007.
It was just before the students had come back for fall classes, and the dining managers were there for a school-year-starting/orientation-type meeting. There were a bunch of dining staff in the area we’d all gathered in, which was in the building where I’d be working. I’d just been taken around the place a bit and ‘shown off’ by my then-new boss for a round of meeting and greeting.
Of course, my wife remembers this day more clearly than me, and has quiz-teased me about it plenty of times. Now, when I recite the history of our relationship, I have to admit I’m often defaulting to at least a few of her memories, now that I’ve rehearsed and recited the corrected version many times. You see, I do remember seeing her right away, and I do remember a great deal about the years we knew each other before we finally got together too, but man—the clarity of her memory of this whole stretch of history kicks my memory’s ass.
I knew several other employees at UCSC Dining because I’d worked with them elsewhere over my years in Santa Cruz (mostly at the resort). So, I had some ‘insider’ resources to start with–and I asked around about her right away. And whether or not she believes me, I remember well that the common word ‘round campus-land was that she had a guy already… so that was that.
After all, the last thing I needed to do was to get involved with anybody at that job, where I was going to be a big fancy Dining Hall Manager and all that. I knew right from the get-go that I needed to get and keep them benefits so I could keep getting my pills so I could keep working the job and everything, so when I heard she had a guy, and that they were in a long term relationship and added in my whole ‘making-sure-not-to-hurt-anybody-else-with-my-disease’ thing, I was out to just ‘be cool’ and keep to myself anyhow.
She claims now, however, that she was totally SINGLE for like years before we finally got together, and that we could have gotten together much sooner because she was just so hot for me from the first day we met. She always has better details about everything, which often makes it seem like she cared more from way on back then, but she knows enough to know that’s not the deal–I just have a crappier memory than she does, bottom line.
That’s not to say hers is perfect or anything, it’s just that between the two of us, most often she’s the one with more of the details like a week or a month or years after events happen. That’s why I’m always the one asking her what happened before and what and after what, and she can pretty much always help me put things back together. And over time it’s made me realize how fucked up my memory really is.
Well anyways, we officially worked for the same employer, but we almost never saw each other. The upstairs area of the building (where she worked) was usually closed during my shift, and that was the regular arrangement for years. Rarely we’d briefly work together, and we’d always start to flirt, but then I’d be back to the night hours downstairs and she wouldn’t be around unless some kind of special evening shindig was going on upstairs.
I remember that I did find out more and more about her though, both from others and sometimes even a little from herself… she seemed just too perfect to believe. I remember wondering if fate was just having a good time picking on me or something.
For one thing, both of us had moved to California from mid-Michigan, where we had grown up about an hour’s drive from each other (she’s from the Kalamazoo area and I’m from Lansing). The area where we were both from is like 2300 some-odd miles away from where we were both then living and working—not exactly a ‘stone’s throw’.
Then it didn’t take long ‘till I started hearing that she’s a musician in a band, and an artist, and of course just add that right onto being beautiful and on-and-on-shut-up-I-didn’t-need-to-be-thinking-about-that-all-while-I’m-trying-to-run-a-dining-hall-shift-so-shut-up-lalalala I can’t hear you…
It didn’t take too long before we developed a sort of ‘cautious friendship’; she had great camera and graphics skills and took pics of my band and helped me make flyers for shows and we both clearly thought each-other were cool… but we kept our distance.
Finally, like after six and some-odd years, I got transferred over to the building she’d been transferred to about two years before.
Well, we did end up working together then, and I finally found out directly from her that she was single (and actually had been for quite a while)… and then we started talking about maybe going to see Further (the reunited living members of the Grateful Dead), who were going to be playing a couple nights over New Year’s in San Fran–and it was on from there.
I remember how after the first show, we walked around the China Town area in the middle of the night talking—we both knew we would have some talking to do if this was going to happen, and that was the time to do it.
I told her all about how being alone had been my routine, because I didn’t want to burden anybody else if I could avoid it, and I really didn’t want to die off early on someone. I had some serious guilt and ethics kind of heavy-stuff that had kept me alone for well over a decade, because I knew how many times already could have been my last go-round–even if I couldn’t list them all from memory anymore.
Somehow, she managed to assure me that she understood what she would be up against, and she made it OK for me to let myself be with her.
It wasn’t my fault. I had evolved into a pattern of trying to keep everyone at a safe distance from me, including her. She broke through it somehow though, and now I honestly have to say that I don’t know that I’d still be here today without her having come into my life, and somehow getting herself close to me, right when she did. She brought out my hidden passion, gave me a renewed sense of mission, and started taking care of me when I needed it most. She kept me kickin’.
What can I say? By the time we got together, she had some idea of what she was getting herself into. After knowing me for years and seeing from whatever vantage points she’d had to see what it was I was going through, she began hauling me to more and more doctor’s appointments, and supporting me through all the increasingly lengthy and intense hospital stays that came along.
And she became my #1 hero.
Now I know for sure that despite any disease or darkness, life really is worth hanging onto, and I definitely feel like I am the world’s luckiest man.
33. Stanford’s study, Phase 1
I really had a great doctor/patient relationship going on with my new team of Stanford doctors right from the beginning.
When I first got referred back and started the second round, I was pretty honest about a few things with my new primary Stanford neurologist Dr. Graber. I explained that I knew I was in a rough situation, but I wanted to be leveled with and told straight-up what the doctors were thinking and talking about, even if it was ‘heavy stuff’ or the outlook wasn’t looking good. He understood.
I also made clear that I was totally ok with any and all of any data that could be gathered from my case to be shared, if it in any way could potentially be used to help somebody else.
And finally, I had made clear that I’d be willing to be used as a ‘test subject’ for new treatments–I figured I was in a good situation for that route when compared to many other seizure-afflicted patients: I was still relatively young, in mostly pretty good shape, and I had no kids to leave hungry. He also very much understood that, and as it turned out, I was apparently an interesting test subject, after all.
A short time after my first return to Stanford, I was called and offered a big opportunity. They wanted me to participate in a study to find out if I might be a candidate for a brand-new kind of treatment—a newly FDA-approved ‘pacemaker-like device’ that gets placed inside the skull.
I was into it.
I learned that I’d need to stay at Stanford up to three times. If after each stage it was decided that I was eligible, I’d progress to the next ‘phase’.
On March 3rd, 2013, Amy brought me to the Stanford Hospital to start the first phase. It was a big, bustling busy facility, but I felt very much like I was somehow in the right place to be seen by the right people that might really be able to figure this thing out with me. It ended up being a the first of several long stays.
Somehow, I managed to get time off for this step without losing my job. I certainly don’t remember all the details now, but I do know that by then, all of the dining admin and certainly some of the Human Resources department were aware of my disability. I think I had to make some kind of ‘accommodation request’ and go through some formal process yet again, but I knew I’d likely have a job to return to when the first phase of the study ended. It had been helpful that I was able to schedule the procedure during spring break, too.
I was to report to the hospital for as long as two weeks, where I’d be kept in a room on camera constantly, hooked up to an EEG (monitoring device) also, so that they could observe and record me having a seizure.
The EEG system consisted of a bunch of tabs that were glued into my hair all over my head which were wired up to leads that all fed into a computer, which recorded and displayed seismic-looking data showing my electrical brain activity. The stuff on-screen looked similar to a lie-detector test—scribbly lines that jiggled around more as I did anything like blinking or sneezing.
What this whole study was all about was trying to locate my ‘seizure focus’, the part of my brain where my seizures originate; something I’ve learned to think of as the ‘bad spot in a tomato’. If it could be identified, it could possibly be isolated and removed.
I guess that sometimes people who go to the hospital to intentionally trigger seizures this way find that, all of the sudden, their seizures are hiding. My doctors explained that this happens to patients about 10-15% of the time, and is probably due to the fact that many of us are just used to having active lives, and all of the sudden we are just totally idle, sitting in a bed, and that it’s likely got something to do with abruptly slowing down our routines.
Well, the clock was ticking, and I really wanted to go off like I had been fairly often recently. I had completely stopped taking the pills for a couple of days, and then I’d started skipping meals, and only letting myself sleep for a couple of hours per night. Finally, I was getting desperate, and I ended up only eating one meal per day for several days.
I had been drinking zero alcohol for a long time (because I was trying to keep from ‘rocking the boat’), but now Dr. Graber had suggested that maybe I could try a ‘prescribed beer or two’ to see if that would set me off. Hilarious—I ended up slamming three warm prescription-labeled cans of Budweiser for dinner, and then I peddled on an exercise bike for an hour before I passed out.
Then, the first seizure hit at midnight. It was followed by a second at 6am.
The seizures that resulted were very violent. They caused me to bite my tongue deeply, and I convulsed so hard that I fractured two of my vertebrae (which had likely been weakened by those previous compression fractures from falling during episodes). I was told by an orderly that I’d gotten to know that when I’d thrashed during the convulsions, the sound of my back breaking could be heard in the room.
The next morning, I was wheeled down to the nearby MRI in the hospital where the new fractures in my back were spotted. I was fitted with a fancy new corset-like back brace, and I was told I’d have to wear it for four to six weeks during which time I wasn’t to lift more than five or ten pounds. I was put on morphine, hydrocodone and ibuprofen for the pain, but I weaned off of all of it as soon as I could, so I wouldn’t end up causing more seizures from withdrawals.
I remember that I did have a lot of back pain as I recovered from that round. Before that phase ended, I was seen by a back specialist, and he explained that there was no way to ‘fix’ the issue, and told me that I might need to use the brace I’d been fitted with if I needed to do lifting when I work, or in case I have pain. It’s come in handy a few times. It makes me hot and look dorky, but I’ll do whatever I gots ta do to avoid pain with a little wrap-up before I ‘chop the wood’ or whatever (not like I’ve chopped much in the past few years, but I digress).
Anyhow I’d also bitten my tongue deeply, once again, in part because of whatever liability reasons and rules I wasn’t allowed to use the wallet during my stay. At first, my tongue was really hurting; I talked with a little lisp and eating was a bitch—but that finally pretty much healed up, as it always did. They considered stitching it up, but (thankfully) decided they didn’t need to.
Either way, the right people were watching and recording, and everybody that needed to now knew what I was dealing with. It was seen up-close, and it was on-the-record.
I completed Phase 1 after a 12-day stay, and Amy took me home.
My journal shows that I had another grand mal six days later, just as I was getting back on my usual sleep and medication routine.
I returned to work on ‘light duty’. I was glad to be back to doing something besides just sitting around in pain, even though the work did cause me some hurting. It was a little difficult because I had to ask for help with practically everything, but the crew I worked with were entirely AWESOME with helping me out as I recovered, and I could tell I had been missed by at least some folks while I was out–which meant a great deal to me.
34. forensics
Time from this whole next year or so is, in my mind, really swirled up. My lovely wife, my seizure journal, old emails I never threw away, and trails of bills and receipts has helped me decipher this ancient period as I’ve put this piece of writing together.
I do remember at least most of the really important stuff.
I don’t remember moving out of the apartment, but I did. I’m pretty sure that was at the end of March of 2013.
I moved into a house a short distance away with my bandmate and friend Tim Gard.
I remember that I’d ‘moved on up’ with this one; it was a nice three-bedroom house, in a quiet suburb-ier neighborhood, and it was one of the nicest places I had lived in.
Tim Gard and I had recorded and mixed and played music together for a long time, and we’d kind of made allies of each other by having similar enemies—I had the seizures, and he had been diagnosed with Multiples Sclerosis (MS). He knew that his time in this life would be ending pretty soon, whereas my sitch was a big “nobody knows” thing. He’d also come to learn a great deal about my condition (and was alright with learning even more about it apparently), so we decided to become roommates.
The place was right near a little dead-end by Highway 1 (which runs along most of California’s coast), so it had super-comforting ambient traffic and neighborhood sounds going on all the time, and folks had real nice yards with flowers and all that.
Amy and I had started dating a few months before, but we weren’t (quite) considering moving in together (yet). For one thing, I still really wanted her to get a close view of what she’d be up against.
Phase 1 of the Stanford study had taken longer than expected, and she’d helped cover the shifts I’d missed because my stay had lengthened while we waited for a seizure to happen. As far as our job knew, though, she was just being ‘nice’ because our dating hadn’t become ‘official’ yet.
During that, she’d repeatedly driven all the way to Stanford, which is a couple hours’ drive from Santa Cruz (depending on traffic). Sometimes she’d stay in a guest-bed in my room, which she’d wheel as close to my bed as she could. I will never forget how at one point we somehow managed to fall asleep holding hands across the space between my elaborate strap-in getup and her little fold-out. Things were getting serious, alright.
When Phase 1 was over, I got back to work as quick as I could. I needed that job more than ever. I wanted to keep those benefits rolling, so I could make it through those next study phases and maybe have a chance to have a happy ending with someone I was now loving more and more every day.
And sure enough, after Phase 1 was completed, we learned more about my seizures and how my particular variety of them was viewed by the medical experts in my ‘orbit’.
When Amy and I followed up with Dr. Graber, we discussed what the next stage of the game plan would be.
I would next have to get a thing called a Wada Test and then get more pictures taken by one of the MOST POWERFUL MRI UNITS EVER ON THE ENTIRE PLANET. Isn’t that so cool!? I mean, when I found that out, I was really feeling like one of the ‘select few’ and I was even more curious what would be seen and understood about my brain.
From what I’ve heard, it’s no longer the world’s biggest and baddest MRI, but you know how that goes. As I came to learn, MRIs are rated in ‘Teslas’ and I had already had my pic taken a couple of times by the usual 1-Tesla range, but this one was a 13 Tesla. So, they were going to be able to look real deep with that thing apparently.
I then booked both the Wada test and the high-powered MRI for mid-June, a couple months later.
The doctor and Amy and I next talked about the possibilities. Apparently, the next phase would be a procedure called a bilateral craniotomy that would be all about drilling holes in my skull, and implanting some electrodes for a while. We discussed the matter in-depth. (Sorry, I hope a little pun-fun doesn’t make me seem too ‘shallow’… oops, there I go again). Anyhow, now we were getting somewhere for sure.
I remember a kind of mush of time and events that came along that spring. Anticipation was heavy. I wanted to keep working, but I had something like eleven grand mals over the next four months until I finally checked back in at Stanford for the next phase of the study.
I did a pretty solid job with journaling the seizures at this point. I’m sure I didn’t get them all, but now that I had other people around me most of the time, I could get back-filled on whatever had happened more dependably, and then put more details in my notes. Also, I knew that I’d want to be able to give the doctors the clearest and most accurate info I could collect before they’d start probing around.
Sources Cited:
Only content derived from personal history and records was presented in this episode.