Short circuitry.

07 July 2017

Some of you might be wondering why I've been around only sporadically for the past couple of months.  Observant readers have undoubtedly noticed that no small number of my posts lately have had identical timestamps - sometimes five or six posts all in one day that went live days or weeks apart.  You may also have noticed that some of my posts are "gimme" posts, which is to say that they're just photograph dumps from months in the past, with few captions and little (usually no) attempts made to clean them up.  Friends near and far have noticed that I've been increasingly more scarce than not; I've taken a few of you into my confidence and asked you to not talk about things.  Some of you that I'm not terribly close to have also noticed that I haven't been around much to chat, and when I have been I've been kind of scatterbrained, which is to say that I don't track track conversations well anymore.  A few of you have asked me if you were talking with beta versions of one or more of my constructs instead of me, and rightly so.  You haven't been talking to any copies of me, you've been talking to me... not functioning optimally, to be sure, but thank you for asking if that was the case.  To be honest with you I haven't had it in me to work on beta_fork/ at all lately.

I'm making a dog's breakfast of this, aren't I?  Fine.

I was diagnosed with epilepsy in October of 2014, and it seems to be getting worse.

Let me see if I can sequence this (something that isn't easy, so I'll break it down into bite-sized pieces) and give you the information that I know I have.  I'll keep the speculation to a minimum.  This isn't some "Oh great and wise Internet, can you cure me?" post and I don't want it to turn out like that.  This is something that's been making my life extremely difficult for a number of years.  It's severely limited what I can do and it's kicked my overall love and appreciation of life solidly in the head.  To name a thing is to claim power over it.

As neuromedicine has progressed, the types of seizures have been better studied and there are many known types with very specific names that reflect very specific sorts of phenomena.  Popular discussion is not quite so descriminating but it's better known, so when I do refer to types of seizures I've had I will use the common designations with links to what I believe to be the more specific nomenclature.  This may or may not be ultimately correct because I'm still in the diagnostic phase and don't have any hard answers yet.  So, please accept some inaccuracy so that I can construct a usable narrative.  I will also endeavor to be level-headed and matter-of-fact about things because, to be frank, I'm scared.  Scared, and frustrated and fed up with what this has done to my life in a few short years.  I will try very hard not to be catty or sound angry or take out my frustrations in text, which is a very easy thing to do right now.

For a great deal of my life I've had a reputation for being somewhat spacy and having problems following spoken conversations, which is one of the reasons that I prefer to communicate online so much.  On the whole, my ability to process and assimilate text and icons has been very good and lends itself well to multitasking so I was able to compensate fairly well.  If you've ever seen my books at home you'll find that I've scribbled notes in all of them.  This is, on some level, another way of compensating for losing track of large flows of data; the act of manipulating it somehow helped me hang onto it.  Maybe I could have been a much better student in school, I don't know.  Coulda, woulda, shoulda.  Let's move on.

If you've ever driven with me, you have undoubtedly noticed that my ability to navigate is undoubtedly similar to that of my namesake.  Occasionally I can find my way fairly long distances (a broken clock is, after all, right twice a day).  Part of this phenomenon is, in part, due to something called jamais vu.  One way of describing it is that something that should be very familiar is suddenly unfamiliar, but there is a lingering sense of having seen it before.  Another way jamais vu can be experienced is that something that should be familiar to you - your house, your next door neighbors' houses if you're standing on the front step, the layout of where you work - can be hunky-dory for days at a time... and then, out of the blue one day it's as if somebody's hit you over the head, driven you to a random town, dropped you off in a random place, and then you woke up.

Frightening no?  Scares the living hell out of me.

This may or not be related in and of itself, but one of the reasons I started blogging about having synaesthesia was to better get a handle on it as well as to explore it in more depth.  It is also worth noting because my ability to handle it has gotten progressively impaired.  I don't actually know if that's useful so let's set that one side for the moment.

Another unusual thing that's come up repeatedly over the years is that, from time to time, my right arm would go into spasm and I would either throw or drop whatever it was that I happened to be holding.  I've broken a bunch of plates, saucers, and coffee mugs over the years, and it used to get me yelled at quite a bit.  This is also typically followed by an inability to move my arm for a few seconds to a minute.  Recent events have lead me to believe that this may be involved.

Going through my voluminous notes over the years (yes, I do mean voluminous - hypergraphia is a symptom of some forms of epilepsy), I feel that I must also mention some incredibly strange, fun, and useful altered states of consciousness that my research suggests may be implicated.  Before anybody goes cracking jokes, I don't mean inhebriation or intoxication of any kind, nor do I mean any of the myriad altered states that practicing various forms of magick produce, but in certain respects I think they can be compared.  Much of my best work - coding as well as writing has been done under circumstances in which I've felt profoundly dissociated from my body.  Not the Virtual-Adept-jacked-in feeling, but feeling as if my whole body was made of lead and strapped down wherever I happened to be.  My senses of touch and proprioception were profoundly deadened, and it was like standing behind myself and watching what I was doing through a long tunnel.  I could see my hands flying, usually over the keyboard but once in a while when I was writing (scribbling, really) longhand on paper as fast as my muscles could move.  Sometimes I've written huge lists of ideas and facts that, after some editing and polishing them up have turned into essays.  I wrote much of the first draft of my first book that way, just after I moved to California that Yule.  Sometimes I've dumped huge chunks of code and design notes into text files that, after a week or two of hacking have turned into software projects.  I did my graduation project in comp.sci that way.  These kinds of episodes have never happened with any regularity, and I've never been able to trigger them, as much as I've tried and wanted to because I've never felt so incredibly, perfectly creative at those times.

Okay.  Random background stuff done.  Let's move on.

In October of 2014 I was in the South Bay with my family and some friends having dinner at a very nice Chinese restaurant.  I vaguely recall it being a nice restaurant with very good food.  I recall standing up... and the next thing I remember with anything approaching clarity is being wheeled into the radiology unit of the hospital.  The doctor standing over me told me very politely not to panic, that I'd had a seizure and was being checked to see if I'd had a CVA.  I was also told that he hoped I had a way home because they'd contacted the California DMV and they'd suspended my driver's license.  In California, you see, if you have any sort of seizure your license is automatically suspended until you've gone one (1) solid calendar year with no seizure activity, and if you have another episode at any time the counter on the suspension resets.  A wonderful thing to wake up to, to be sure.  Since then, my driver's license has been suspended more often than not I'm somewhat embarassed to say.  I was also aphasic (unable to speak) and paralyzed on my right side.  The CAT scan showed no signs of a stroke or blood clot, and I recovered the ability to both speak and move a few hours later.  I woke up the next day at home.

Astute readers will recall that in late 2014 (timestamps on the posts to the contrary because I'd put them off for literally years) I'd had MRI scans of my head done as part of a diagnostic procedure.  Those scans were done as a result of said seizure, which I'd been assiduously avoiding making any sort of reference to.  The mischevious sci-fi geek in me has wanted to photoshop shadows of circuitry into some of the images to post for fun, but that doesn't seem like a particularly good idea because the reason the scans were done was far too serious.  Recent analysis shows a couple of anomalies roughly the size of pencil erasers, hotspots really, in my left temporal and frontal lobes.  The overall shapes of the anomalies does not appear suggestive of cancer; it is possible that they are scar tissue and neural network disruption due to head injuries sustained while I was younger (which some of my older friends no doubt recognize).  Data points, no conclusions, no value judgements.

Since that first major episode I'd had more frequent, lengthy, and most of all noticeable seizures of absence, mostly during the day but occasionally in the evening.  The episodes of missing time vary in duration, anywhere from a minute or two (most of the time) to long enough for my screensaver to kick in.  They've happened while I was standing; a few times I was caught before I went face-first through the dining room table.  They've happened while I was laying on the couch or bed; let me tell you, cleaning drool off of your laptop keyboard or tablet is a frustrating and embarassing task.

Remember those sudden twitches of my arm I described earlier?  I didn't know that those might be symptomatic of some kinds of seizures.  Myoclonic seizures can be characterized by such occurrences.  I have no hard data yet, so let's set that aside.

In the past year or so, my seizures have been getting progressively worse.  Seizures of absence have been slowly giving way to more pronounced and severe forms of seizures.  I haven't written about it yet because I haven't fully processed the experience (rather, what I remember of it) but the short form is that my grandfather died in May of 2017 and Lyssa and I had flown back to Pittsburgh to see him one last time and, as it turned out, help organize his funeral.  While in Pittsburgh I'd had two fairly severe seizures two days apart of which I really only recall one with anything resembling clarity.  After getting back to California I'd had two more in short succession.  Since that time I've had several more seizures, one of which landed me in the hospital (I'd had an episode at work and my cow-orkers, understandably concerned, called 911).  The other occurred just after getting home from work, and necessitated taking a leave of medical absence from work on the orders of my doctor.  The tremors in my hands, which were once an occasional nuisance have become pronounced enough that some days I can't touch type and have to hunt and peck.  It's not uncommon that I see phantom objects and things moving in my field of vision, which may or may not be a harbinger of an upcoming seizure.  They usually manifest as something the size of a mouse or maybe a gerbil running around (which gives one quite a start when it's my desk or a book in my lap).  Remember that bit in my HOPE talk last year about the exocortex I'm building having implications for helping to mitigate cognitive deficits?  In the past year or so, many of the agent networks and constructs I've been building were specifically meant to push back against some of the cognitive problems I've been having: Moments of missing time preventing facts from being stored in my short term memory (so I can't memorize them into long term memory), being unable to sequence long chains of things anymore (complex conversations and bodies of data), and very large patterns.

Post-ictal syndrome, the period of time when one recovers from a seizure is the part that really gets to me.  My short term memory gets blown away by a seizure so I don't remember it happening or how it happened.  However, my memory of the day - my memory log - gets tattered.  When I wake up the next day (an hour or two after a seizure I sleep for anywhere from ten to twelve hours straight) the previous day is gone.  Period.  I don't remember.   I couldn't really tell you what happened the day before, what day it was, where I went, what I did at work... it's blank.  I lost an entire day.  I also typically experience paralysis when the seizure is over.  Usually it's partial paralysis, on the right side of my body.  There have been some times where I couldn't move my hands because my arms were locked in a curled, cramped position and they only relaxed after some time.  There have also been times when I couldn't move at all and had to lay wherever I was until I could move again.  It's vexing to be stuck in a body that you can't control, but not nearly as much as not being able to speak.  Aphasia is another typical after-effect of one of my seizures (and yes, I do mean "my"; this is a bull that I'm going to grab by the horns, dammit).  I can't talk.  Even when I've regained some degree of movement I can't form words or get them to my mouth.  I can understand people speaking around me, and I seem to be able to interpret text if I can see it clearly, but I can't say what I need or answer questions.  This may have been how I wound up in the hospital.

The way things are going I think I'm going to convert my driver's license to a basic ID card and give up driving.  I don't need to drive very often around here because the Bay Area has very good public transportation.  Most of the time, when I do need to drive somewhere I can catch a lift from J. Random Ridesharing Service and have them do it for me.  My car's not paid off so I'm probably going to sell it when I can legally do so.  I don't think it's safe for me to go clubbing anymore, which is why I've missed the last couple of Turbo Drive events, and why I don't go to Death Guild anymore.  This is, in part, due to the fact that the combination of factors that trigger different kinds of seizures aren't well characterized, and the last thing I want is to be at a show that I really love (let's say the Cruxshadows go in tour in the States again), get blindsided with a seizure, get hauled out of the club in an ambulance, and then be accused to overdosing or something.  This is also due to the fact that the idea of becoming incapacitated like that in public frightens me, and I'd prefer to be in an environment that I know well around people that I trust.  Call it agoraphobia if you like.

Before I go any farther, and this is going to sound uncharacteristicaly sappy, I want to take a second to thank the people I work with.  They've been nothing but understanding and helpful since things started getting bad.  When things have been good, they've been good.  When things have been sketchy they've been there to help.  When things have been bad, they've gone out of their way to help me.  They keep telling me to take care of myself and not try to do more than I can at any one time.  They've yelled at me to take days off to recuperate and they've helped me get back into the swing of things when I've come back. They haven't treated me as a washout or as incompetant, but as someone on the team who needs help, just as I've tried to help other people.  I don't know how I can properly repay them for this kindness.

I'm writing this post from a hospital room in a Bay Area hospital's neurology ward while on another week of medical leave from work.  Switchboard will automatically post it for me because I get the feeling that I'm going to need to limit my jacktime somewhat in the days to come.  To better characterize what's going on inside my wetware I'm doing a week-long 24x7 video EEG session in a neurology ward.  I'm wired up to an 18 channel EEG and EKG and I'm being monitored on at least one securicam almost all of the time (necessities like bathing and the like excluded).  I've been taken off of my medication for the duration of the session.  The idea is that I'm supposed to have at least one seizure under controlled conditions while the chemoelectrical activity in my brain is being recorded.  When they analyze the data they should be able to figure out where in the brain seizures start, what kind of seizures they are, how the storms of electrical activity propagate through the brain, and where they go.  This should help us figure out what kind of epilepsy I have, what specific kinds of seizures I have, what seems to lower my seizure threshold, and what (if anything) can spark them off.

Oh, yeah: Medications.  Better living through science and chemistry, right?

I started off with Levitiracetam, and it seemed to work very well but the side effects were highly problematic and I was taken off of it after two months.  The old standby depakote worked well until it slowly stopped preventing seizures.  It was kind of a shame that it stopped working because it has some interesting side effects on other parts of the brain, and while I was on it I suddenly had a head full of ideas for writing music.  All of the music I have on my Soundcloud account was written during this time because I suddenly found myself able to write music and do something with it.  Then my seizures came back and started getting worse, and my dose was doubled and while it pushed the seizures back it also chased the music away.  I haven't been able to write music since then, and it galls me to this day.  Additionally, the side effects of the new dose of depakote left me stupid, slow to act, and it impaired my short term memory a great deal.  I felt like some important part of my brain went dark.  Then, one day, the depakote suddenly stopped working and my medication was changed again.  I'm now on oxcarbazepine, and to be fair it was working well until things suddenly went sideways again last year.  The side effects have fucked with me a little, but then again when you start tinkering with the brain odd stuff is bound to happen.  It's solidly wrecked my ability to recognize people's faces and my sense of humor is... well, let's say that it's forced and leave it at that.  I'm not very good around people right now.  Then my dosage was increased 150%  after those seizures in Pennsylvania and it was working just fine, until... well... you know the story from there.

Yes, I have my California medical marijuana card.  I've had it since 2015.  I've tried a number of extracts of CBD and THC and I seem to get the best results from a 1:1 ratio.  Before anybody asks, no, I don't get stoned from it and I do not want to.  It seemed to be working pretty well, but now I have some data points that it  may have been interacting badly with another medication I'm on and I made the decision to refrain from using it for a while.  Also, because I'm in this hospital deliberately trying to provoke seizures having it in my system would be counterproductive.  I'm suspending judgement and skepticism as to how helpful it'll be in my case until I have more data.

You know, it's weird how most of the characters I love have wonky wiring in their heads.  Austin James' scientific pareidolia that was described by Asimov as "slightly schizophrenic."  Sam Beckett's swiss cheese memory, which I've developed an appreciation of due to how both epilepsy and the side effects of the drugs I'm on have fucked with my own.  Case, who was rescued from a life of exquisitely fine cortical damage deliberately inflicted with a biowarfare agent.  Max Cohen's migraine headaches.  The HAL-9000 and all of the interesting things that can happen from fucking with an AI's inner workings.  Siri Keeton's... well, epilepsy, and the problems that followed from it.  Like calls to like, they say.  One of these days maybe I'll learn to pay attentions to patterns like that.  Looking at that picture of me with my head covered in dermatrodes and gauze, I also can't help but think a bit of Bobby Newmark's state in Mona Lisa Overdrive, seeing as how I'm pretty much confined to a bed until I'm discharged in a couple of days.  Because I'm a seizure risk I'm also technically a falling risk, and because I seem to have pitched over a couple of times they don't want me to fall and hurt myself.  A bit frustrating, to be sure, but they're not wrong.  The last thing I need right now is to bust a couple of teeth if I glitch out.

You know what, though?  Here's the thing that really fucks with me.  Really and truly.


It feels fake.

Do this: Rest your hand in your lap and don't move it.  Okay?  Just let it sit there.  Can you move it?  Sure.  Are you letting yourself move it?  No, because I told you to not move it.

When one of my more minor seizures starts, it feels like I got a weird idea in my head.  Like one of my more screwball ideas just popped right into my head.  Not as wild as this but visual aids can't hurt.  Then it starts to take over.  It consumes me, pushes me out of the way.  Then I'm not there anymore.  Then I pop back and I don't know how long it was or what happened.  Or, let's take one of the seizures where I'm more or less there for the tail end and it isn't so much the "me" switch gets flipped and then flipped back as it is the dimmer getting turned back up.  And I can't move.  I know I can move.  I know I'm capable of moving.  I know I have muscles, and they're hooked to my brain, and I have the capacity to move.  But can I move?  No.  I can look down at my hands and try to move them, and I can think as loudly as I can "Fuck, I know I can move my hands, I can move my hands, I know I can move my hands..." but there's this little rogue bit somewhere behind my eyes that just says "Nah."

And that traitorous little fucker is just as much "me" as the thing that just spent the evening typing this stuff and looking up links and is front-loading music and drinking coffee and staying up all night.

That's why it feels fake.

My friends and family tell me it's not fake.  The people who've been taking care of me (I feel sheepish saying that even though I know it's true) tell me it's not fake.  When your brain malfunctions, and you're inside your brain, those malfunctions feel just as much like me as they are an observable phenomenon.  The people I care about, who have been taking time out of their lives to look out for me, check up on me, and listen to me ramble and cry and, occasionally, keep me from hurting myself when I blow a fuse and the word comes back and hits me with the fuck you stick tell me it's not fake.  That doesn't keep me from being scared that something's going to happen while I'm in here, and there's going to be a fuckton of EEG data piled up on a hard drive somewhere, and when they go through it... a doctor will come back and say "Well, we know what we saw, but the EEG doesn't show anything like seizure activity."

I hate brain dumping like this at 0-dark-thirty hour (I'm doing a sleep deprivation marathon, which gives one a lot of time to think) but there you go.  I've gone back and forth about writing this for over a year now because of how inherently risky it is to do so.  I've had people ask why I haven't written any music in a while, and I brushed it off by saying that I hadn't had much time to work on music.  I need to cancel on a collaboration after I save the final draft of this, and I think that's for the best.  People have asked me why I haven't gone clubbing or to any shows lately, and it was life getting in my way.  When I did feel safe enough to go places or do things, it was always followed by taking one or two people aside and telling them what was going on.  A few weeks back while doing an OPSEC audit, I realized that the list of people I'd taken into my confidence had grown quite long indeed, and the number of people who'd witnessed me have a seizure or two in public was starting to get there up there also.  I sat down to think about things from the 50,000 foot view, and decided that I may as well pull the disclosure trigger and be done with it.

Which also means that I can write about what's going on, and in some way come to terms with it.