the wrong side of the bed

well, i hadn't had a seizure in quite a long time (2 weeks?), but this holiday weekend was a busy one for me. a seizure saturday, a seizure sunday (while waiting for jeremy and sal to cross the finish line at the mad city marathon), and something not quite like my normal seizures last night. could they be carole's fault? perhaps she brought them on. epileptogenic carole, that's what we call her.

Labels: epilepsy, friends

sean worked at the fine arts library when he was in college. he had a strange (and sometimes frustrating) co-worker named hugh. once, when hugh was asked to shelve in the stacks, he tried to beg off the task with this statement, "i'm like a flower, and people are my sunshine. i need them to live." hugh prefered to work the circulation desk (as did everyone, it was an easier job). i do not remember if this was effective in passing off the shelving task to sean.

point: i am like a flower.

i've been feeling pretty gross and sickly for the past few days. really, since i got back from texas. i wonder if it is psychosomatic. i also wonder if it is a side effect. i pretty much wonder if everything in my life is the side effect of something.

today is my 30th birthday. please read the following TMBG's lyrics*. they will illuminate how the passage of time works.


Older

You're older than you've ever been
And now you're even older
And now you're even older
And now you're even older
You're older than you've ever been
And now you're even older
And now you're older still

Time is marching on
And time is still marching on

This day will soon be at an end
And now it's even sooner
And now it's even sooner
And now it's even sooner
This day will soon be at an end
And now it's even sooner
And now it's sooner still

You're older than you've ever been
And now you're even older
And now you're even older
And now you're even older
You're older than you've ever been
And now you're even older
And now you're older still

* it is my birthday. that is why i did not reproduce the lyrics to "it's not my birthday." don't be silly, people.

i feel like shit today. i feel very ugly. i feel dull. i don't like the things around me.

i was thinking earlier today that every time someone breaks up with me, or even when i break up with them, i am convinced it is because i am not good enough. i think this is likely because the first person i dated stressed the "i love you, but i am not in love with you" thing an awful lot*. when he told me we couldn't date anymore, he said, "you are the best thing by far that has happened to me this year, but it just isn't enough."

* he was also the first person that i'd ever kissed and the first person i ever fooled around with. when i drove him to work the next morning, he said, "i feel dirty. do you feel dirty?" i didn't, actually.

i'm reading the spiral staircase by karen armstrong. it is quite good. a professor in my department, doug*, recommended it to me after learning that i have temporal lobe epilepsy. like me, karen armstrong had been misdiagnosed for years with anxiety and panic attacks. like me, she lived with epilepsy from 18 until about my age. like my mother, she entered the convent, but left it for a secular life (around the same year, i suspect). like me, she was studying for a doctorate. her PhD did not pan out because, like me, she failed. however, she should not have failed the defense of her thesis. i suppose some might argue that i should not have failed my prelims, but i did.

i've just gotten to the point in her memoir when she is diagnosed. she described the elation she felt at finally having a correct diagnoses after years of unsuccessful and often frustrating therapy. i stopped reading there and jumped in the shower, only to find myself sobbing. i'm scared to read the rest of the book. i'm scared to learn what happens. because of her failure to receive her PhD, she is forced to switch gears late in the game. but, because i know what happens to her in the long run, i know she becomes a successful author.

some people have asked me, since finding out about the epilepsy, if i am the lucky sort of epileptic who gets strange visions. it isn't so for me. i am run-of-the-mill in my epilepsy. i gain nothing from it. i doubt that i will go on to be successful at anything. i am almost 30 with almost nothing to show for it.

do you see why i am a bit scared to read the rest of the book?

* this asterisk is not to say that doug is not his real name. as far as i know, it is. rather, i wanted to say that i am grateful to doug for leading me to the book, even though i am scared to finish it. fear is not always bad, right?

i know that a lot of my friends are coming to town, but i haven't really written it down anywhere. if you know me, and you plan to be in madison, could you send me an email with the dates? i promise to write it down this time.

i'm in austin. my sister's cat just woke me up. i'm allergic, but Little One does not care. in the process of nudging me and snuggling me and otherwise trying to get my attention, he also bit my hand. i gave up on trying to sleep, even though i am very tired.

yesterday around 2pm, my grandfather died. it was a truly strange and amazing experience for me. my grandmother and aunt went home to let the dog out, and were to come right back. my sister had to give a presentation. my brother and uncle weren't in austin. only the hospice nurse and i were in the room with him while he was dying. my grandmother and aunt were gone for maybe 40 minutes or so, which turns out to have been exactly as far away as my parents were (driving in from houston). i held my grandfather's hand for the last 15 minutes he was alive. he started to breathe differently, more shallowly. the hospice nurse said, "these my be his last few breaths, come hold his hand." and i did. and then he kept breathing for 15 minutes. shallow, horrible, gasping breaths. at first i was crying and crying because it was such a strange experience and quite scary. but the hospice nurse kept saying, "let go, you can relax." and things like that. but my granddad was holding on. after awhile, i started laughing because it seemed like my granddad was stubbornly hanging on. he must have been pretty miserable. his lungs must have hurt (well, he did have a morphine drip, so maybe not). so i held his hand for 15 minutes, laughing and crying, and i smiled at my granddad for the last 5 minutes or so. i knew that my parents and my grandmother and aunt were just minutes away. i was scared that he would die while they were gone, moments before they came in the room. but, granddad waited. my grandmother, aunt, and mom walked into the room at the same time. i told them to hurry and hold his hand. my dad had stopped to find a bathroom. they held his hand and were telling him to relax, and that everything was fine, and that he was doing a good job. my dad finally came in the room. i told him to hurry and touch his dad somewhere. as soon as my dad came in the room, granddad let go of his last breath. it was very strange. everyone was still touching him and encouraging him (to breathe!), but he let go as soon as my dad was there. i could tell he had died because the vein in his neck that i had been watching became completely still. i looked over at the hospice nurse and she nodded at me and said, just to me, "he's dead." then she said for everyone to hear, "he's passed on now." and everyone stepped back. but, then, my mom and dad kissed him on the forehead. and my grandmother and aunt touched his hand again. we moved away from the body and hospice staff came in to poke and prod him. my grandmother said, "i don't think i need to see this." it was, weirdly, the first indication i really had that she was affected by his death. my grandmother is human.

we moved into the hall. we waited around. my grandmother began obsessing about funeral arrangements. eventually we left for the funeral parlor. we mostly waited around in there. my family was silly and morbid. my aunt said that she wanted to be buried with her winnie the pooh stuffed animal, but i thought it was unfair to bury him alive just because she died. later at my sister's house, we were discussing this again and my dad said that it was a bad idea because, if pooh got hungry, he might eat her corpse. these are definitely things to be concerned about.

* the hospice nurse said this to granddad at one point while he was dying. i thought to myself, "this is a gift i could really do without ever receiving again." it actually was much more peaceful than i thought, but, still, i don't want to repeat the experience anytime soon.

jeremy thinks that my posts are too down. he thinks i should post when i am feeling up. so, here's something good: i haven't had a seizure since last tuesday! a seizure free week!

of course, i told my mother and she said, "don't be too excited about this, dorotha. i don't want you to be disappointed when you have another seizure, and i know that you will have another seizure."

she's right. i do go without seizures for spells sometimes. then when i start having them again, i feel crushed and defeated. still. still, mom, let me have a little victory.

well, i've known for a long time that i share a birthday with bob dylan, and i learned a few years later that patti labelle has the same birthday, too. just now, on the simpsons i found out that flander's cat has my birthday. who else?

my granddad is dying, maybe right now. it is weird to think about because i have never been close to my granddad, despite having known him for 30 years. 30 years, and he is like a stranger. i know he likes to drink scotch. i know he likes sports, particularly football and track. i've seen him eat turkey dinners about 26 times. i know he likes card games. i know he is conservative because i know that my family does not talk politics for a reason. i know he worked in advertising at the dallas morning news. that is all that i know. that is it.

how do i miss that? how do i figure out a way to be sad? in all honesty, i'm glad he is dying because his life has been pretty miserable for the past year or two. i'm not sure that he has been happy at all for the last year. i want his misery to stop, but in the same way that i would want anyone's misery to stop. most of my emotion has been directed at hating my grandmother. i know, hate is a strong word. but, i do hate her. she is the only person i hate, and it is profound.

i hope my grandfather goes peacefully. i just want his pain to stop.

which of these dresses does gofugyoursef describe as sublime and which absurd? extra credit: why?

my mother, once a nun*, thinks it incredibly odd that all of her children know "the our father." my brother, who worked at a catholic school before katrina destroyed that neighborhood, is quite adept at reciting "the our father." he was contractually obligated to do it on a daily basis. but, my mom didn't know how my sister learned it. as a nurse, she often recites the daily prayer with her patients because it seems to calm and reassure them. mom thinks that she must have just picked it up that way, but she still thinks it is strange that she knows it. when we were talking about this, i started to recite it, too. i didn't quite get to the end (i forgot the trespassing part) but i thought i did admirably for someone who has been to a handful of church services (and not all of them catholic).

but, how do you know it!
mom, you said it all of the time.
no, i didn't!
yeah, ma, ya did.
why would i do that?
why do you do anything? you are a total mystery to me.
you must have learned it somewhere else.
no, i definitely learned it from you. you made references to all kinds of things all of the time, mom. that was just one of your standards. you also would say "unhand me, greybeard loon!" i don't even know where that is from.
the rime of the ancient mariner, silly. but, why was i saying that?
like i said, i don't know why you do the things you do. i think you would say "unhand me, greybeard loon" when you were fed up with us. i think you would say the prayer when we were being unforgiving of others - you know, the forgive those who trespass against us part.
huh. i guess i did say it. i mean, that part is a good message.
so, that's why i know it, ma. i haven't secretly been going to church.
that's good.

* okay, she wasn't a nun, exactly. she never took her final vows. but, still, weird for us. we were raised athiests.
update: stinking henry caught some spelling errors again. if i wanted an editor, henry, i'd freaking send my posts to gwen before, um, posting them.
update AGAIN: sorry, henry. i just lashed out at you because of my own insecurities. that is no excuse for snarking at you.

from webmd:

Most people tolerate lamotrigine very well. Common side effects include:

Rash. Rash tends to occur more often in children than in adults and in people who are also taking valproic acid. On rare occasions, the rash may be severe and potentially life-threatening.
Drowsiness.
Difficulty falling or staying asleep (insomnia).
Dizziness.
Blurred or double vision.
Headache.
Nausea.

so, no fatal rash, but i haven't been able to sleep ever since my doses went up to 100mg. good golly, it is getting hard on me. i woke up 3 times last night for an hour (at least!) each time.

the stupid part? glad you asked. the less sleep i get, the more seizures i have.

so, i had my follow up appointment with my neurologist today. he told me that, given the structural problem with my brain, i'm likely to not respond completely to the medications. after i saw some information about botox on his desk, we had this conversation:

you do botox here?
yes.
wow. i wouldn't have thought so. it seems so unnecessary.
oh, well, we use it for some problems with the brain.
oh, good. i guess i think botox for cosmetic reasons is sort of... frivolous, but i can be sort of judgemental.
well, i think some people have too much money.
this coming from a neurologist.

later...

i'm trying to find a job with a non-profit, but so many of them require driving. do you know what kind of coverage i have under ADA?
(insert boring stuff about ADA and driving with epilepsy)
but, you don't have to work for a non-profit.
yes, but i don't want to work for evil.
there is no such thing as evil.
yes there is! but, in any case, i want to have a job will let me do good. i don't want to work for some big corporation.
you may have to.
but, i'm a sociologist!
i know. that is one of the things we are trying to fix here.

so, i may have started it by pointing out that he is well-paid as a neurologist, but he implied that my chosen field is the result of a brain abnormality!