The kids each have a pal staying the night so the house is lively and I get to stay up after all of them to clean up. A friend of mine is coming to take mine to church in the morning, and out to breakfast and the Museum of Science and Industry, where they can ride a bicycle on a tightwire. Their dad gets them Monday . I slept 20 hours of yesterday's 24, and much of the day before that. I don't like that kind of shit (sorry!) at all. It is one reason I'm not going with them and the other is, I can't afford me. Each little thing like the spaceship and tornado are $4. But it would be absolutely a cheerless occasion for me to stand aside while the kids go on these adventures alone, since it will altogether take hours and hours and I will be the unhealthy one tiring and hurting from it all. Dying to be in bed. What a concept, huh? I mean, when you're terminal and you start being in bed too much, you're dying to get out of it, not let it mean what it means. But when 4 hours of a mellow Sunday--church, breakfast at a restaurant, a museum, seem too much like hard to you, you forget that notion of the bed being despised and imprisoning. It's Friend Bed. Friend Car Backseat. Friend Upright Chair. When you gotta go, you gotta go. A lot of different people are helping out while I am on interferon and I dearly appreciate these people. One day when we were hurting one person brought us milk and another brought us juice and cucumbers and tomatoes and grapes and bananas and apples and coffee (which we don't drink here ) and a third party collected and brought us new-looking used clothes for my 5'8" 13-year-old. And none of them go to church or know each other, these are friends from different walks.Not do-gooders or in the business of helping the unfortunate- just Bob and Patricia and Diane. And a lot of this happens. I wish I had the strength to read magazines online but I tire easily. I think it is way cool that these good magazines put their issues online . Online is a way cool dude. So are independant films. I'd say I like food bunches, too, but i've lost 17 pounds in the 9 weeks I've been on interferon. You just don't use food too much. I love my kids. They are the greatest kids in the world. I wish they had someone to care for them after I'm gone besides a man with a grey ponytail who belongs already in a nursing home, so without thought processes that he left the dead kitten he went to bury for my daughter on my porch , which we found out 7 hours later. He was probably sitting there "Now what did I dig this hole for?" and planting strawberry seeds . Who knows. But he went home without completing the task he went out with the body to perform. weirdo. Don't let him raise my kids. My internet friend who makes custom gutters says I should not stress on the real dad getting the kids on my demise, that he would love them most and most purely so is best for them even if he is a lazy hillbilly. (I have cool friends I made from this website, too, like him.) I appreciate intelligent input as most friends say what I want to hear ("God no--their dad can't raise them!") Well now it's late night and there's a hooker working outside my home. I have to go out and bust it up. Wish my webcam worked and I had a long cord. I could get going a popular sort of site. With wives, anyway... divorce lawyers--- My life is fine. I don't want anything I don't have and i still keep getting gifts, such as discovering great films or books or authors or music; this is every day. Cool find of the day: P.J.Harvey, who plays the ever-cool Magdalena, like the hooker, in "The Book of Life". Her song "Love Too Soon" is way cool. She's cool. Lots and lots of things are cool. You know. I guess what's cool is the ability to appreciate so much, and to have faith that God will work in the world, so that the stuff that bothers a sensitive soul can be borne and one can be cheerily grateful not depressed. I usually am, and no I'm not on drugs and I haven't had alcoholic beverages in 15 years .And who are you? I just sent Irene and Tiffany and Rob and Mindy here, and somebody keeps entering my Debbie's House poll every week of the year.My Dad wanders around here a lot, still not believing his mother had an older sister on the ship's manifest at Ellis Island, and 2 or 3 friends check in on me here first. Frank Zamenski has to, as I lost his email address in the crash last month.(Hurry Frank, I need some tech support here) Oh and Robak I bought an outfit for the little girl you went to Romania to get and l the next day lost your email with your address and phone and your email address too so why are I not hearing from you? If you don't contact me we will never meet up again my friend. I don't even know what city in Connecticut you've been emailing me from this past year. I used to think , everyone I know with a computer gets home each day and has 20 emails to answer, taking all their rec time. But it's not stressful. You feel good , you don't have to answer these guys or it takes one second to, and you feel more connected. You're aware, first of all, of the quality of "caring and sharing" that wired people have adopted like some universal protocol. You can't feel your way around that one until you're in it . It's a newbie and of its own cloth. Secondly, you're in a community of like minds in that you are all using the same electronic equipment and can help each other do so more proficiently,enjoyably, or reliably--also you are another community, just like your neighborhood community, workplace community, worshipping community, hobby community, support group community , inlaw community, scouting community, youth soccer community, volunteer -work community. All those other communities are part of your emails to and fro, too, but then there are emails from old high school classmates , old employees moved on, little sisters of old friends, the community of 30-years-ago. And those folks you'll never see the faces on, who answered your guestbook so wittily you wrote back and so on, or you liked an article in a local rag and emailed the author and now you -all talk now and then; or some of them people in your invitation-only Yahoo newsgroup are like having cousins up in Montana , they be giving you recipes and advice like fussy aunts--It's your little community of people with computers thinking of you. Since they are diverse,you get "forwards" or URLs from some folks that are just perfect for others and you send it on to them, and this all goes around, including the viruses. There's folks you get emails from but never "forwards" and you know not to send them what they appear to view as frivolity.There's emails you love to hang around responding to and those might just say "Wazzup?" Others you ignore because do you say thanks for each forward ?, Naturally not. But they speak to you--or you should be asking that emailer to buzz off. There's no time for junk email. This one lady kept sending me links to comtests to get rich . Each involved signing up and giving away my email address and, even though I filled in no forms and deleted these communications, soon getting a 60% increase in junk email. I put all my pals into a folder I made called "My Friends Today" . As my daily 35 emails come in, the good ones automatically go here. Stuff from the New England Journal of Medicine, Medscape , the Trout Unlimited Chapter named for my grandfather, my friends in bands' schedules, goes into "Good Accounts." Everything else goes into the delete box, which is incredibly clever--it misses no junk mail. I don't have to see any of it and get virused.I'm glad I tried this place out, computers and online , it was just right for me when I got here. I could type but not write, as the oxygen is not in my arm muscles.I could sit 10 minutes or 20 but not stand, stoop, or lean and hold up a video camera at the same time. Fun--Adventure Island, swimming, diving, water-skiing, sledding, fishing, boating, canoeing, traveling, rock climbing--are all things I did that last time already, but am just the same game to do a hundred more times God willing. I can't carry the Sunday paper under my arm 2 blocks from the newstand without the pain of giving-out muscles. I couldn't turn more than a few pages without my arms being gone , before the newspapers became narrower this summer. But on my computer I can tell my day, save it , and have it online in 0 minutes total time, where every friend I write to and call could drop by , and those kind, thinking strangers I mentioned populating the web community.Maybe John Updike will come by. he can't come by the contents of my desk drawers but he can come by here. Maybe someone from 20/20 will stumble on me and champion one of my issues--how funky health care is for the poorest insured, how sophmoric Tampa's Gasparila fest is. I write to, and add graphics and music for, anyone who likes it. My 4 most popular parts of this site--which bring me at least 2 or 3 new emails a week, are 1. My Boarding school--I'm the only hit for it on any search, women look for it all the time as they get online 2. my High Wind In Jamaica site--I am the only hit again, and one or more people a week email me asking if the movie is on video anywhere I can get to them and why my songs aren't playing. (Homestead once supported large sound files, then lowered the max size and dumped all of our tunes that played too long, meaning most wavs and MP3s ,and I can keep the shiddy midis.I had recorded the theme song and some choice soundbites off the movie ) 3. My Bernice Bowen site--18th Combat Engineers Site (tie) . I get 2 or 3 emails a month about these guys, at least one each, 99% of them supportive of Bernice that are about her 4. So weird, but every week somebody fills out my poll on my twin's house. My twin doesn't have a computer and would be more likely to sign my guestbook with deep cuts at me under a psuedonym than to keep identifying what her walls, floor, etc resemble in a poll. I'm thinking it's her old pal Linda or my dad or my pal D. Voelker, who's tried all the fun things on my site out more than once, but I don't know. My new neighbor, a studious Hawaiian Samoyan, is checking out my site this minute. All of you miss most of it, so with my new lease on it and new respect for web site rules of thumb (SMALL images), I am going to wok out a revamp and carry it out. I started the journaling when I moved to LA without my oldest child, for her. Also my sister and parents back in Florida. Also 4 Florida friends wanting updates on California and me that I couldn't afford to provide over the phone. And my cousin in Michigan, following my trip and tale. It also helped provide a place to post recent photos for all these guys. We had some real fans we lost the email #s of, like the lady who came to get the bat we found fluttering against the inside of our porch screen like a torn-winged moth. The bat wouldn't eat our offerings and the Florida Bat people sent a gal who had her own mealy-worms she cut the heads off of and squeezed the juice of down the throat of the tiny adult Florida Seminole bat. She explained the critter to us, took him to use in demonstrations about bats in traveling shows for schools , and left her email address as , through the school system, she counseled kids in the next county who lose a parent and was very sorry that our own county didn't offer this at the school next door , for early grades, so she wanted to be there for us, for Mary who was getting bad grades and claiming she was the only kid like her at school--with one retarded parent and one parent who needed a heart transplant. She emailed lots of sound advice, as did Catherine Baldwin. Don't have time to cry over spilt milk. Then we got back from LA and our LA contacts wanted pictures and news and advice .. one was especially concerned that I sue my dentist for a nick his tool slipped and put in a tooth below the gumline, which then became unfixable as Medicaid will only pull all your teeth and give dentures, or do nothing to an adult mouth at all--no pulling one tooth, no treating gum disease. As several years passed, the nick became an unhealing hole which is bad for a transplant candidate--gum disease and germs there have direct paths to the heart which holds the germ in its pool too long and it takes root there, causing systemic infection, blood poisoning, heart infection and death. They don't even take you in the program, your mouth is bad.Secondly, this hole in my gum collects food and my mouth is always sore. The hole enlarges from brushing and holes in mouths heal 3 times slower when your body is on therapeutic levels of interferon-combo. couldn't sue him though--when I got back, he had just had a stroke 4 weeks earlier . So I put that on my site, in my way telling my friend that "you must feel the pain of this", which she did, recognizing the tune from Les Miserables (Castle in the Clouds), and she never asked me why I hadn't sued him aftr that.The diaries were to be temporary, but I never went back and cleaned up, I would index subjects , not months--Drunk -driving, Interferon , movies most folks miss out on,see my kids a growing....the current model for treating chronic pain, my fiction and poetry.I 'll kill a bunch af uselessness and make my site mappable and searchable and indexed well, all 3.There won't be any big blocks of copy--who did I think I was--Steve Otto?Updike? I'll work on improving my presentation here; it will be a worthwhile goal, something to do as all these germs do their bidness wid me.A project I look forward to that will keep my mind sharp. He who is all good has done great things for me. Well, if I can get my zipshop and scanner back up after replacing my main board--the scanner scuzi card was in the fried motherboard so did they toss it out with it or what ?--I can add new photography (wanna see my shoes?)How about my jewelry--a white beaded necklace with a heavy rectangular 'pendant"with the word "medic" over a grey button.... Fridge contents? (4 boxes of interferon, 2 jellos) the snapshots of my house burning down next month...I can put up my stories. I can go to bed and stay --- |
See hear I like to write. After I did a lot of it and a lot of it and a lot of it, the process seemed to develope to a point where something took over itself, something with a keener eye than I. Somthing that saw (or knew) exactly what to juxtapose on the left hand page of the story and the right, so that when I for no reason brought those two disparate elements together into the same story, something third occured. The human mind is very fine. It gathers, and it knows. When the Human Whole gathers, it's guessing. It's using everything--old hostilities, egoism, false ideations, jealousy, a soft touch for a pretty face, a trusting nature,a low self-esteem, Inside that there is the thin little vein in the mine that is the pure shit. This is the gal who fathoms out where Surface Me doesn't have anyplace Deep. What I have to do to churn her butter is write. Lots. For long times. Anything. Get me fluid. Then I think of the poor happenstance that befell someone, or someone dead 's come to my room to chat with me, or I go for a memory although I start with a log and the only reason why might be, it was going around in me. How things you think do, you know? During a liver biopsy they gave me a drug oe two that made me dream vividly while awake. Later for my spine injuries I was given oxyontin. After I took the first tablet I was laying on my bed with my girls watching tv and I heard people over, visiting me, talking to me from the foot of my bed , like they do when you are in a hospital. I struggled to come to enough to talk so that they wouldn't find me rude.I got the hospital spooks from them, the vibes, and I just tied this into the hospital experience. As in , realm of Experience : Very Yes. People at my bed bottom telling me stuff,common. There was a chipper, clear-voiced lady (Is there make-up yet to keep your voice clear?) and a lw-voiced, quiet-speaking man, and he'd ask me something. And I 'd try to clear the frog in my throat . After a few times of this I blurted out something, like"my mouth is stuck shut. " And the lady went right into , "don't worry, you don' have to answer right away, this is something to think about. OK? No one's putting any pressure on you." I still don't know what I'm suposed to be dealing maturely with here but I scratch out "Thanks a lot" with my new voice. Then anther person talks, and I get the drift that that's who the lady was talking to. Maybe an engulfing second later I recognize a cable television health show when i see it. no one talked to me, but I was so sure, I had talked to them. I didn't experience this too many more times because you get used to narcotics but in the beginning, the oxycontin would have my mind drifting off, not just in scenes with loved ones but but like, suddenly i'm dealing with the overhead garage door opener the parents had in their cars when we were kids. And telling my dad about it. So I see my thoughts as random, chaos. But when I meet my muse there in the slippery chasm she has turned my spun flax to gold. My scribbled impression my automatic selection of details are the lotto numbers spinning in a tube, coming up same as I picked them winning me a story The kind with alliteration and symbolism, layered meaning and poignancy, the kind called good. I think as Michael Landon complained on his Bed He Lived In For Many Days Until he Moved Into His Grave;"Pain medications rob you of all your creativity, silencing the Muse." So it got harder. My fine mind wasn't being tapped. How do you say something big in poem by a dim bulb-----The web says hepatitis makes you get fog-brain as the dying toxins appear all over in your body and include ones upstairs that promote brain damage. It's nearly nine the next morning. The sun, a greeny color, sparkens the green carpet in patches and dances off a glass mosaic bench in a bright white fire above rattan chairs and table, with all their bars and empty spaces, like the windows in Iran where housewives hang the handwashables on the bars. Little girls,3 under 11, are asleep on the floor all around me in colorful sleeping bags. They want to stay asleep a lot longer than they'll get to. I like days, eves, winter, summer--I've always liked just about everything about everything==shadows and artistic use of color and the beautifully clear faces and horses in pine boards and old peeling drywall in dirty old Mississippi gas station restrooms |
My brother Paul Tony, 26, died September 7, 1983. My childrens' grandmother, Virginia Myers, was born Sept 9. Mary my daughter was conceived one September 9 |
