Yes, that's what I call my epilepsy. I'll take every last bit of street cred I can get, even if it's a 2000-plus year old attribution.

Dec 24, 2006

I’ve had seizures since I was thirteen. Luckily, they’re controlled (largely) by medication. I know that, compared to many others, I barely have any problems at all. I don’t have to worry about having a seizure in the middle of the day, for example, or about being hypnotized by blinking red lights.

Still, though, it is distinctly un-fun.

Last winter, I had a seizure during the night. I remember waking up, stumbling into the bathroom and wondering why I was so dizzy. I made it back to bed, no worries no falling. When I woke up the next morning, I was still very disoriented, dragged out, mildly nauseous…in short, this is what I felt like the day after having a seizure. I must have had another one. I felt like crap, so stayed home from work that day resting, making sure I ate and drank plenty, and moving about as little as possible. I contacted my GP, who walked through the symptoms with me, advised me to take a additional quarter-dose of my medication if I felt another aura coming on, and told me to consult a neurologist. (This began the search for a neurologist, as I hadn’t seen one since I returned from abroad four years’ previous.) The next day I felt much better, and since it was Friday and I was going to have a weekend to finish recovering, I went in to work.

This past summer, I fell asleep on my couch one day. I woke up suddenly, and got up to go lay down in bed and have a proper nap. Shortly after standing up, I felt the disorientation and creeping numbness in my fingers that has always heralded a seizure. I made it into my bedroom — large open area, no sharp furniture-edges upon which to injure my head should I start convulsing — and lay down on the floor, trying furiously to calm down. (And if that last phrase sounds vaguely oxymoronic…try it some time when you’re freaked out: calm down as fast as you possibly can, as if your life depends on your being utterly calm.) I slowed my breathing and waited for the dizziness and panic to abate. I eventually calmed down enough to sit up slightly, reach behind me, and grab one of my pillows to put beneath my head. Then I waited: waited for the dizziness to pass, waited for my calm to stave off another seizure, like I’d done a few times before.

As I lay on the floor, Ursa came and sat in front of me and started purring. He’s done this a few times before when I’ve had seizures or seizure auras, and it always helps knowing that I’m not totally alone. Never mind that the cat can’t do anything to help me if I have a seizure. Never mind that, if I have a seizure, I have to ride it out on my own. No one else can do anything for me, other than make sure I don’t injure myself while I’m convulsing. Knowing that I’m not by myself has always helped me before. It’s like a mental security blanket. Purring cats are inherently comforting — at least to those who don’t actively dislike cats. Ursa sitting by me and purring helps me calm down, lets me know that I’m not alone, gives me a focus for something outside myself. I let my eyes close, listened to Ursa’s purring, and waited for the dizziness to ebb. I briefly opened my eyes and glanced at the clock, and saw that about 30 minutes had passed while I lay on the floor waiting for the aura to subside. It seemed like the pre-aura was hanging around longer than it usually had, not going away but not becoming a seizure either.

I remember thinking, “Let’s get this over with, one way or the other” when the trembling started. It was a deep twitching, like the shiver you get when you’re suddenly chilled: it starts at the core of your body and moves outward. That’s what this was. My whole body shivered, my legs and arms spasmed harder, and I felt like I was losing my balance even though I was laying down. The hard shivering moved up my neck, and my vision dimmed just slightly. Eventually, after about a minute, the shivering died down completely. I felt wrung out, exhausted, like I’d just carried three boxes of full of books up the stairs to my apartment. All my muscles were sore, and my stomach was moving uneasily.

Before this, my brain and my body had a little deal going: if I have an actual seizure, I black out. I lose consciousness. I have the aura, I lay down, I black out, I have the seizure, and when I become conscious again the seizure has passed. I don’t remember what the seizure feels like: not consciously, not in muscle-memory. If my body has to go all spastic, my brain gets to go offline and not record the events for posterity. So this episode annoyed me. My brain and my body had changed the terms of their agreement, and had neglected to notify me.

I was also annoyed when I thought of all the fear and worry I’d go through when I felt a seizure aura coming on, the disruption and aggravation and panic my family went through when I began having seizures. For this punk-ass puny little thing, I lived with a lurking fear at the back of my mind? This miniscule little mouse-fart of a twitchfest kept me under its thumb, albeit subtly, for the better part of my life? Compared to most other peoples’ seizures, this was nothing. This was tiny. This was a minor scheduling change, not a condition around which to change a life. How dare this neurological hiccough cause the fear that it did! What the fuck?!?? It was like watching a horror movie and finding out that the menacing shadow on the wall — the one whose appearance was heralded by moans and building-shudders — was caused by a piece of carpet-lint moving in the breeze from the central heating vent.

That seizure really wiped me out, though. It was a week before I felt able to go back to work. I stayed at home, sleeping and eating peanut butter (high protein) and applesauce (some protein, plus liquids), occasionally taking a Dramamine when I got so dizzy I couldn’t even sleep — which meant sleep deprivation, which meant that I felt something very like a low-grade seizure aura much of the time. This recovery coincided with the massive, nasty heat wave that hit the west coast of North America (well, most of the continent, actually). I had problems sleeping for about a month, and asked my GP for a prescription sleep aid…which didn’t help, as it turns out. I eventually spent the nights at my parents’ place, over the hill by the ocean, where it was cooler at night and I could actually get some sleep.

I eventually found a neurologist who was accepting new patients and who took my insurance, got to go through another MRI and another EEG (did you know that in the 1980s they stuck probes up your nose, and now they don’t need to do that? Brilliant!!!), and was prescribed a new medication. This switchover period happened when I was staying at my parents’ place, so if something should go very very wrong I would be near people. Luckily, the new medication required very little time to build up in my system. Unluckily, I had to be taking both medications during the switchover, which lasted for about a week. It’s been about four months, though, and the new medication seems to be doing just fine. Once again, though, I’m a slave to a very costly medication. This stuff is about $350 for a month’s worth, and since the medication is so new there isn’t a generic version yet.

Still, though, as much as this condition irritates the hell out of me, it’s impossible not to keep some perspective. Epilepsy was called ‘the sacred sickness’ by Plato, and was apparently observed in several rulers and military leaders including Julius Caeser, Genghis Khan, and Alexander of Macedonia. If Alexander the Great could conquer the known world in the days before dilantin, I can suck it up and deal.

Related entry: Living With Epilepsy
Keywords: | Holidailies | epilepsy |
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I just had to know what my friends were saying behind my back in front of my face.

Dec 20, 2006

When I was 4 or 5, my weekday afternoon routine included watching Villa Alegre on TV. I learned to count from one to twenty-nine (they never did tell us how to say “thirty” ). Years later, in junior high, I enrolled in the AP Spanish courses and essentially took my first year of high school Spanish before I left middle school.

I went to a high school with a fairly high Asian population, and many of these kids spoke Mandarin or Cantonese (two dialects of Chinese). It was a tiny bit exasperating to hear a few of my friends talking to each other, recognize my name, and ask them “What are you guys saying about me?” only to receive the reply, “Oh - nothing.”. (Yeah — pull the other one, it’s got bells on.) I talked about enrolling in some conversational Chinese classes when I started college the next year. Oh, but Chinese is so hard to learn when you don’t grow up speaking it, people said. Even native Chinese people have problems with it!

...oh really?

I enrolled in full spoken-written-reading courses in Mandarin Chinese, and after several years I actually got close to being functionally literate in Chinese. This requires that a person be able to recognize over 3,000 characters on sight, so it’s no mean feat. (My own observations about the Chinese numerals: the first three are just like Roman numerals, except laying on their sides…so after the party, I suppose. The Chinese character for “ten” is a cross — the Roman numeral ten, staggering home from said party.) I was able to learn the spoken language relatively quickly, especially compared to other American students. The tones didn’t seem to give me that much of a problem, and I was able to minimize my American accent. Still, it was demoralizing to visit my friend’s home and listen to his three-year-old niece speak better Chinese than I was able to speak after three years of study. Never mind that I knew kids learn language faster, and that she was essentially immersed in the language. (Maybe, for my own ego-protection, I should have stayed away?) I eventually studied Chinese for seven years, but have lost almost all of the spoken language ability…though I can still recognize many of the characters and even break some of them down into their components (also known as ‘radicals’.)

In between learning these two languages — in high school — I took geometry. I loathed geometry. Proofs were irritating, and I didn’t get the point. (I was never fond of the whole ‘show-your-work’ phenomenon if I was able to solve problems in my head. I even wrote my essays “backwards”...but I digress.) The geometry prof was also in charge of the cheerleading squad, so any time during sports season we had an easy way out of tests: “Hey Mr. GeometryProf, how’d the basketball team do?” And off he’d go, talking about last night’s game in great detail….et voila, no quiz that day!! I’d sit quietly, assembling wordsearch-like blocks of letters. Then I’d look through these blocks for things that looked like they could be words in some language. Over the year, I wrote down about 600 words or syllables; and a friend and I spent the last two weeks of that school year deciding on definitions for the words I’d “found”. There was a mixture of whimsy and logic: J. decided that nsi was why because it just sounded like a why. I then decided that because the two words were so highly similar, nsia would be because — the answer to nsi. It made sense to me: add one syllable, make a word’s partner or response.

I later ended up using portions of this language in a roleplaying world I built. I also use some of these words as passwords. Since they mean something to me, they’re memorable to me: yet it’s not likely that these words would be in any cracker’s brute-force-attack password dictionary, nor would they necessarily occur to someone. It’s just another little plus of my being intensely bored in geometry class, all those years ago.

Keywords: | Spanish | language | Holidailies | Chinese |
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The story of the neon sign.

Dec 13, 2006

When I was about 17, my aunt came to visit for Christmas. She was the youngest of my dad’s sisters, and something of the ‘rebel’ of the family. She moved frequently, she had several eclectic hobbies, and she often did things that just bewildered the whey out of the rest of the family. For instance, that past year she had quit her job and moved again…to go to school to learn how to make neon signs. I don’t remember whether or not she wanted to become a sign-maker or if she just thought it would be fun to do (probably the latter). At any rate, her decision to go to neon school was just another Unusual Aunt Elle thing.

I hadn’t seen my aunt for several years; but a few years ago, she and I sent each other letters fairly regularly. This was the same aunt who, one year for a Christmas card, sent out mix-cassettes of various songs including stuff from Dead Can Dance, an acapella version of the Hallelujian Chorus by The Roches, a Susanne Vega tune, and something called (I think) “Pablo Picasso Never Got Called an Asshole” She wasn’t fighting hard to be different, but she didn’t fight to be the same, either. If she liked something, or wanted to do something, that was that. I was looking forward to visiting with her again.

We all gathered around the tree that Christmas Eve, and I was handed a box. “To LaughingMuse, from Aunt Elle^†,“ read the tag. The box was 8x11, but a bit…light. Oh no. Clothes. Possibly a sweater. With ruffles. Or solid pink with scalloped trim and possibly a ribbon at the neckline. I opened the box, pulled aside the tissue paper, and saw four clear glass tubes taped together. “Picture a neon sign,” read the attached card. “I will make you any kind of neon sign you want: any color, any size, almost any shape.”

The next day, Aunt Elle and I sat in the family room discussing my neon sign. We talked about colors and shapes, and she said that signs without too many sharp tiny bends or uber-intricate details would be easier for her to do well. We spent about an hour looking at design books, talking about what I was envisioning (a stylized oriental dragon line-drawing, surrounding my name in Chinese characters) and her abilities. Yes, she said, she could do this, no problems. The minimalist, flowing design meant that details didn’t have to be exact, but that it would look good. The characters might give her some problems; but since they were mostly straight-ish lines with very few curves (and minimal curves at that), it wouldn’t be impossible, even if she’d only done a brief apprenticeship thus far.

My mother was (and is) a decorating and redecorating fiend. Every surface in their current house is faux finished, covered in murals or stencils or this or that wash or glaze. When I was growing up, she chose the paints and wallpapers for my room. She solicited my opinion, and I wasn’t forced to accept anything that I found utruly hideous; but she was always choosing the florals, the Victorian prints, the subliminally busy things with flourishes and curlicues all kinds of visual gingerbread. She was Martha Stewart before that creature’s rise to promimence: Moms was always finding a wallpaper pattern with matching bedding, or painting a table skirt to match the wallpaper pattern, or a furniture accent scheme. (Perhaps this is one of the reasons I have bare white walls: the shock of my youth absolutely refuses to wear off.) Sitting with my aunt, choosing the colors, dictating the style, content, and size — this was the first time in my life that I really felt like I had that much control over my environment. It wasn’t that I was previously stifled or steamrolled, just…mildly finessed. This was the first time someone had said, “Here. You choose. I want you to really really like this”...and meant it.

I never received that sign. To be quite honest, I don’t know what I would have done with it: neon signs’ power units use a lot of electricity, and the constant buzz would have meant that either I kept the sign off or lived with the noise pollution. It probably would have broken during one of my many moves. But I have the memory of that gift in my mind: unspoiled, unbroken, and I was the one in control, even if over something as minor as a 4x6 piece of art.

Aunt Elle gave me the gift of potential. She gave me the gift of respecting my opinion. She gave me the gift of taking me seriously. She gave me the gift of appreciating my idea wholeheartedly. She didn’t suggest alternate colors. She didn’t say that the sign might look better larger, or smaller, or landscape-orientation instead of portrait. She just listened, and said “Yes”.

† = not our real names, obviously.

Keywords: | holidays | Holidailies | family |
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My third cat, the diva.

Dec 12, 2006

When I lived in the tiny, plaster-walled, low-voltage unit with my two cats, I was adopted.

I had originally rented the place because a) it was a place by myself, and something I could afford at the time; b) it allowed pets; and c) I was greeted by a very friendly black cat that enthusiastically rubbed its face — its whole body — against my hand. (Only later did I learn about pimp season. Ahem. At any rate…) Late one summer, nearly a year after I’d moved into this place, I saw that small black cat again. I said hello, scritched behind its ears, and went about my day. The next morning, I saw the cat again, hiding under my car. And the next morning, hiding at the back of the little parkway. And the next. And the next. It was now the middle of October, and I began to wonder if this cat had any humans. I worried about the cat being caught by some neighborhood kids and abused when Halloween rolled around. Over the next few evenings, I fed the cat little amounts of kibble, slowly coaxed the cat into my place, and checked around the neighborhood to see if anyone was missing a small, black, extremely friendly young female cat. Two nights before Halloween, I kept this new cat inside all night and let her out in the morning (after breakfast). This routine continued even after Halloween: up in the morning, feed the cats, shower, dress, let the new cat out, work, come home, call the new cat to come in (after about four days, she would go and sit on the front porch when she saw my car), feed the cats, relax/unwind/eat my dinner, sleep, and repeat. The first cold hard rain of December, I opened the front door and the new cat (whom I had not named yet) just looked at me like I was five kinds of silly-stupid. She was sitting, with Ursa, on top of the five-foot cat tower. She was fed. She was warm. She was dry. She was not going out into that cold wet ick.

Fog did go out the next morning, and was waiting to come in that evening. For the remaining year until I moved to Treehouse Central, Fog was an indoor-outdoor cat (though indoor only when it was rainy, thanks ever so.) The cats fought occasionally — most often Monkey and Fog — but while they weren’t all bosom buddies, no one ever required even the most minor of first aid.

No one I asked had lost a cat, or knew anyone who did. I thought that perhaps this cat had originally belonged with the people who had lived in the house behind my unit — people who had later moved away. Seven months after Fog joining the family, I took all three cats to the vet and asked them to check Fog to see if she had been spayed. They called me later and said that she did have a small scar from being spayed previously. (I worry. I wonder what happened to her former humans. I wonder if they know that she’s safe, and has a home where she’s loved.) When I moved to Treehouse Central, the cats were agog: their available space had instantly tripled. One day when I ran a load of clothing to the laundry room, I left the glass patio door open. It was an amazingly nice day…and Fog got the screen door open and led the other two out to sit in the sun. They all scrambled back in when I called Fog’s name and asked what she thought she was doing.

When I get out the digital camera, Ursa looks resigned. He’ll put up with my taking a photo or two before he expresses his displeasure by moving elsewhere. Monkey will either try to hide or demand to have her picture taken, too: it depends on how she sees the activity that day. Fog will pose for her portrait. She knows she’s beautiful, she loves grooming Ursa, and she loves pawing at the blinds to make me get up and open them to give her an unobstructed view, or a perch. Then she’ll trot off to some other place, sit down, close her eyes, and proceed to ignore the world at large. (Apparently, the objective is to train me properly rather than to secure sunny resting spot.)

Related entry: Ursa
Keywords: | Holidailies | cats |
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