Matthew put little three-plug splitters all over my house. i need some of them around my parents house. i had to unplug the computer speakers to plug in the hospital bed and something else to plug in the oxygen generator. no entertainment around here. mom is in the living room, in a hospital bed. she’s actually not acting very differently than she was a few days earlier. she was unengaged then too and flailed around her arm towards some invisible object above her and looked around concernedly. now she does all of those things but her eyes are closed and she sleeps real sleep more. The hospice nurse said, “I’ll see you thursday unless your mom dies first.”
The other shortage around here is concentrated frozen orange juice. my house is swimming in it. i had ordered box delivery of three OJ cans a week, but it was based on outdated calculations of how much oj i used to drink. so i cut it back to a can a week. that still is a bit high, only because i am lazy about washin gthe pitcher. if we had magic elves washing the pitcher, i’d drink a can a wek. so my home has a big excess and my parent’s home, soon to be just my dad’s home has none. or few. i didn’t check. they always buy minute maid which is bitter and a cocacola product and i don’t like think about pesticides, banana republics and opressed workers over my oj, sicne i drink it in the morning right off. i want to wait until after the comics.
Oj is also an afternoon drink. it’s the ultimate in comfort food. it’s full of sugar and empty calories. it’s only saving grace is probably vitamin c and sometimes calcium, which i don’t eat enough of. but empty calories are better than no calories. and i really want a glass of oj right now, since i’ve been crying all day. and i want the sugar too. Even the organic apple juice is all gone. i poured myself the last glass of it and discovered it was tea. medicinal tea t promote calm. so i drank it anyway.
I think I am going to esperanto class tonight. but i don’t want to go to the opera tomorrow. i’m not even sure about class tonight. actually, i don’t want to go.

My mom is lying dying and i’m watching general hospital. i know the names of several people in it now. i didn’t even ask the hospice nurse about steroids. how long has she got? a week? two? it’s soon. nobody on general hospital dies this way. for being around a hospital, they have remarkably few sick people. the occassional “accident” victim (was it really an accident?) more amnesia that you can shake a stick at, even cancer sometimes, but not this kind. tv cancer people alsways get to make a sensible goodbye and then die painlessly. brain cancer is pretty painless, tho. but no sensible goodbyes. when my mom was in the hospital and before she had an operation, she was on steroids and our family had gathered. she thought she was going to die that night. she was trying to have a deathbed scene. she was talking about me inheritting her jewlry, but she couldn’t talk. we could figure out what she was saying eventually, but when we realized the gist, we stopped playing along. we knew she’d be alive in the morning. the next day, she kept repeating, “i thought i was cooked!” she was so happy and surprised to still be alive. we’ve never repated that deathbed scene. i don’t know what her last wants and will is. i don’t care very much about how her stuff will be divided up. i certainly don’t need a year’s salry worth of shop-at-home jewlry. somebody on general hospital has been shot. he’s kidnapped a doctor to take out the bullet. none of these people have jobs. even the doctors don’t show up to work or do surgery except when they’re captive. they don’t even die. they just disappear for a season and then whoops, the wrong guy has been buried or something. and they have perfect hair in the hospital. people with head injuries don’t get shaved patches. but despite all this wonderfulness and their perfect hair, they’re always unhappy. half the time they’re trying to kill each other. don’t they know it’s futile? these people hardly ever die. yet all the tv commercials are for pharmaceuticals. medicine to fight side fx of chemo. nothing to forestall death. the hospice nurse says a couple of days.

My mom is still sleeping. Her eyes move when she sleeps, so she might be dreaming. Apparently, she woke up for a few minutes this morning and recognized my dad. She hadn’t been recognizing him for a while. He had a beard for 30+ years and then a year or two ago he decided it made him look old and shaved it off. I’m still not used to it. My mom apparently wasn’t used to it either, so he started growing it back. It’s about a centimeter long now. So this morning, my mom got a look of recognition and touched his beard. That was during the five minutes of being awake she had today. She can still drink out of juice boxes even though she’s asleep. Drinking out of a straw is sort of automatic, I guess. The juice boxes have eight ounces of liquid and 110 Calories. Soy Dream Enriched has 150 Calories per eight ounces, but we’re out of that. Soy Dream Chocolate Enriched has 220 Calories, but my mom was starting to get a rash because she is mildly allergic to chocolate and was getting loads of it in milk, soy milk, ensure, scandi shake and pudding everyday, so we stopped giving her chcolate. Her rash is gone, but she had the beginings of a bedsore this morning. Margie is rolling her from side to side every so often to nip this in the bud and stop formations of new ones. Anyway, whole milk has 160 Calories in 8 ounces, ensure has 250 Calories in eight ounces and ensure plus has 350 calories in eight ounces, but none of those come in juice boxes, so she probably can’t drink them anyway.
We’re asking hospice tomorrow about giving mom steroids. It’s my suggestion, but I’m not 100% sure it’s a good idea. It’s forestalling the inevitable, I guess. Is it a good idea to wake her up with chemicals, just to have her dragged back down again in a week (maybe more time, maybe less)? I have the idea that if she woke back up, her friends could rush in for a last minute visit, but how many of them would and how many of them would be too scared? Would her brother come? Would her son? Is it just stupid denial on my part to want to do this thing? My dad wants to ship her off to a convalescent hospital, because it’s hard for him to be around her when she’s in a near coma. He think she doesn’t get anything out of his presence and of course, it’s difficult for him. So waking her up for a week delays her being shipped off to fatima for a week. I’m trying to suggest a compromise. Maybe she could be put in a hospital bed or something. Right now, they still sleep in the same bed, only she sleeps a lot more than him in it.
All of this is very disturbing. It was hard enough dealing with this when my mom was still awake. I think if I had a job, I would have been fired by now. I guess I don’t work for the iguana foundation anymore.
And Chimera seems to have lost the publish button. hrm, must cut and paste this to IE. I guess blogger must have signed some deal with microsoft to use stupid IE-only javascript tags. bleah. it’s against the whole idea of the internet. somebody sais that people who write single-browser specific web pages are people who yearn for the days that you couldn’t open a mac text document on a pc and vice versa.

Hrm, my mom has been asleep for the last 3 days. we just got her a reclining wheelchair. it’s been like this all along. as soon as we figure out how to deal with whatever stage she’s in, she moves on to the next one. I used to make a big deal about saying doobye to her, getting all maudalin about when the last time she was going to be able to say goodbye would happen. well, i made such a big deal about it that, until she got sleepy, everytime my dad or i or anyone kissed her, she would say “goodbye, have a good night. i love you.” so i realized it was a stupid thing to make a bid deal about it. but maybe it had meaning to her. anyway, last time she was awake i didn’t make a big deal about it and now she’s asleep. i wasn’t really paying enough attention to her. my dad is acting like it is a huge change that she’s sleepy all the time, but she was pretty unengaged the last time i saw her awake. anyway, if she can’t wake up she can’t swallow medicine. my dad wants to wait until tuesday to talk to the hospice nurse about getting a suppository form of the anti-seizure medicine, because the nurse has an appointment for tuesday. i think he should give them a call today or tomorrow. just because she hasn’t had a seizure yet doesn’t mean that she won’t have one. i don’t understand his motive for waiting. does he think that if they don’t witness it, maybe it’s not real yet? maybe it will reverse itself if we refuse to adjust? or maybe he’s noticed that she changes when we adjust and if we respond to her being unconscious, she’ll die. He asked me to start writing a biography of her. goodness, i have no idea what to write. My mom was born a long time ago and went to college and got a job and was very happy and then gave it all up to get married and have ungrateful children. that’s her autobiography from my childhood, especially when i was being uncooperative. She was a med tech, which meant she drew people’s blood and then looked at it for abnormalities and sometimes diagnosed diseases based on the blood samples. She said, “I had doctors coming to me for advice. Doctors! Now it’s ‘Where’s my socks?'” Um, then she inheritted a lot of money and became involved in 327467312649 charities and suddenly started making friends thanks to the miracle of anti-depressants. Then, just as she was getting into leadership roles in all of her organizations and finally found her footing, she got a brain tumor. everybody in the world thought she was super sweet and loved her, but very few of them came to visit. her family members avoided seeing her. the end.

speaking of avoiding my mom…. arg. i picked up micheal moore’s book Stupid White Men and read the whole thing and apparently read really slow cuz it’s 5:00 now. what am i thinking? it’s not like i have extra mom left. oh, i’ll go see her in a couple of months. not going to happen. still, i thought she would be dead by now. i have no idea how to guess how much time she has left. october? no way. i thought. yarg this sucks. this is supossed to happen to other people. i am suppossed to lead a charmed and stress-free life because i am special damnit, and people around me are supppossed to be too. and i’m suppossed to be young forever. and the whole fxcking summer is gone and 2002 is almost over and it sucked and i did nothing useful with my time. i’m a year older with nothing to show for it. i need to stop screwing around. and i learned no GRE words today and wrote no music and only read a stupid book and didn’tr even go see my mom or get a job or do a darn useful thing and i’ve been living my life this way for a whole year. more than a year. 1.5 years of lame-ass slacking. and before that i worked for aol. i suck. i, like all software people both with jobs and without, am a parasite in the intestine of humanity. i’m so fxcking special i don’t need to get a job or go see my mom or even “find myself” (the groovy excuse for directionless young artists) or nothing. sometimes i feel like nothing i do matters and other times i realize it’s because i do nothing. poor little rich girl. fxck.

it is time for me to go sit with my dying mother. i didn’t go yesturday. there was no good reason. i used to do six days a week and take mondays off, but my wife complained that she went to work five days a week and had to sit with my mom the other two, and she wanted a break. so now i take sundays off, which is fine except now i have no time for myself at all. i have mornings. but i’m not a morning person and i certainly can’t immerse myself in a project the way i’d like to. i’m definitely an afternoon person. it’s not like “having a life” is important to me the way it is for some teenagers who want to have a life because their parents don’t. Well, my mom has a life but just barely. the expiration date is on the horizon. every day i don’t see her is a day that i don’t see her.
one of her friends called up and told my mom’s attendant that they all already thought of her as dead because she’s doing so poorly. obviously, she’s not yet dead. but goodness, i have a hard time being there too. how can i be angry at them neglecting her death bed wehn i use the same rationalizations? when i saw her on monday, she was surprised everytime i spoke because she would forget i was there or something, even tho i was right next to her and she was looking at me. or maybe my voice was frightening, since the temporal lobe deals with fear and her temporal lobe is full of tumor. it’s easy to decide she must have forgotten i was there and therefore doesn’t benefit from my visits and anyway i have music to write.
she’s on oxygen because she breathes laboriously while sleeping and thus her sleep isn’t restful. it’s not prolonging her life. i haven’t posted it yet to her blog because i don’t know how to explain it in a way that won’t frighten away all her friends. oxygen is a harbringer of death. it doesn’t matter. they’re all frightened away anyway.
Everyone you know is going to die, including yourself. you may be next, you may not. Some of these people will go suddenly, others will be sick like my mom. this is a good place to exercize the golden rule. You can say to yourself, “oh, i wouldn’t want people to see me like that.” how very vain of you to say so, but many do. yes, i’m sure you’d rather end your life surrounded by strangers and machines. or would you rather have someone you cared about holding your hand? i thought so.
Somebody on a mailing list i’m on just died of cancer. We were informed. folks were emailing out emssages to him that were passed along. People were saying things like, “don’t die. you have a lot of music to write.” i understand where that comes from, but he’s going to die. piling on unfinished buisiness seems to be the wrong thing to do. so my mom’s friends at the museum are thinking, “don’t die, you have a lot of docent tours left to do.” and when they figure out that she has zero docent tours left, well, maybe she’s already dead. This isn’t what life is about. and as an extenstion it certainly isn’t what death is about. Yes, we all fear it and try to avoid it. Or at least, we ought to try to avoid it. but it’s going to happen. which is a better thing to say to a dying person, “don’t die! (it’s scary!)” or “i’ll miss you.”? you know the answer to this. Now go see your sick friends while you still can. It’s hard to talk to somebody with oxygen tubes, but it’s harder to talk to a headstone.
Those are strong words, aren’t they? But I still haven’t left yet. Everytime I skip a day she’s worse. She’s worse anyway, but then she’s 48 hours worse instead of 24 hours worse. There’s a noticable difference. It’s scary going to see her and knowing she’ll be worse.
People have this idea about death, where dead people get to keep their memories. My mom’s memory is clearly the result of some sort of tissue thing. Now it’s gone. even if she spontaneously went into remission tommorrow, her memories wouldn’t come back. And yet they’re suppossed to be restored after all her tissue is destroyed. Furthermore, some folks expect her to gain additonal knowledge. Dead folks know what happened to Hoffa maybe? No. they’re dead. People are the result of biological processes. when those processes cease, there’s no more person. nobody will know after death why you’re sorry you didn’t come see them. They won’t finally approve you. they won’t do anything because they will be dead.
No wonder atheists are are sad at funerals.