Saturday, June 30, 2007

i guess in some cultures, a closed door is rude. two of my caregivers from neighboring countries will not close the door when i ask, but leave it partly open.

i pee in a urinal, a plastic jug. they pull open the shorts on my left leg. i hold the jug, my head hung down, and the caregiver backs off because a watched pot.

they close the door when i pee. it's so the kids don't come in. or so i thought.

recently the caretaker 'closed' the door and set me up with the urinal. before i let flow i saw a camera's flash in my peripheral. out in the hall, i thought. but my son was in the room, in front of the caregiver. she began to converse with him. i tried to hold the jug with my legs. i used my right hand on the chair beeper to convey displeasure, and then he was asked to leave,

Friday, June 29, 2007

when the day might be hot, it is best to retain the morning cool as long as possible by keeping the windows closed. then when the heat breaks in the late afternoon, open the windows. if things seem 'stuffy' inside, step outside for a breath. but opening the windows too early is self-defeating.

Thursday, June 28, 2007

useless info

When Sara came out of the dressing room she walked quickly and she said the dress did not fit.

The woman who ran the shop said that sometimes a dress will be shrunk in the wash, and so the size on the label is no longer correct.

"And sometimes they are mislabeled from the start, which may be why someone sold it," she said diplomatically.

Sara sighed and hung the dress back, then turned to Neil and put her hands on the front of her thighs. "It was so perfect for me."

"It was just the right color," he said. It was a shimmering light turquoise and she had the dark hair, fair skin and grey eyes that would turn it into magic.

He wished it had fit her.

After they left the shop and walked out into the sun, she said "Can I ask you something?"


"Why were my purse and my sunglasses and my jacket all on the floor when I came out?"

"Oh, I'm sorry. I put the purse on the floor and the glasses on the purse. The jacket must have fallen off the chair. I would have meant to keep them on the chair and next time I will."

Suddenly, in that little-girl voice that they both thought was funny, she said "It's okay."

He laughed.

To the left were the pines and some redwoods. Ahead they could see the seagulls and some dunes, but not the ocean. They could hear it . The town was separated from it only by the highway.

They walked down past the church, holding hands. There was a rise in the road and then it descended to some pastures where horses were.

At the market he bought a pastry and some juice. She watched him eat as they sat on the bench outside. He put his arm around her and people passing on the sidewalk would glance at the two of them and reach their own conclusions. It didn't bother him and he didn't want to bring it up for fear she would think it did bother him. He liked it, actually. It made her more exciting. But he couldn't say that either.

Her lips were beautiful and her eyes were kind. She leaned forward as he took a bite of the pastry and he watched her this time. Her lips were parted, her cheeks were flushed, and her eyes sparkled as though she were seeing something erotic.

"You want some?" he said.

"I just like to watch."

"You like to watch me eat?"

"It's a sensual experience."


"Watching you eat. For me, watching you eat, there is something sensual about it."

In the phony European accent he said, "I can pleasure you all day in this manner."

She laughed.

"Your laugh is the most beautiful thing," he said. "It's so satisfying to me."

"Oh, Neil."

Her lips were always beautiful, he thought. She leaned in to watch him take a bite, and he kissed her instead. It was the first time since the year before, but she seemed pleased.

"You have the face of a girl I would have fallen in love with in grade school. And I would have had a crush on you, which was a very romantic thing."

A little tear came to her eye and she smiled sadly while looking down. She put her arm through his and leaned against him. "Oh Neil," she said, "if only you were ten years older."

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Wednesday, June 27, 2007

pls put the pillow back and bend down furry headredt a tad, so that pikkow stays



Tuesday, June 26, 2007

son, the vulcan said that the boy was a type of alien, and that his mother was trying to teach him how to breathe our air.

the orion dancer was not a slave.

Monday, June 25, 2007

the bogus brainhell contest!

send me your creative imitation of my blog!

i'll pick a winner whenever i feel like it!

prize money: zero ($0) dollars!

Sunday, June 24, 2007

please do. just get him to ease into exercise very slowly. once anything hurts or feels strained, he should stop. if he is macho, his playing days are over.

> "...the point of team sports is, using your body and your brain together,
> the brain planning moves, sure, but the body, often just reacting in split
> seconds, unpremeditated motion, knowing what it can do, what it thinks it
> can do anyway, and once in a while, once a year maybe, that perfect play,
> where all the forces and chances line up as your rushing legs and reaching
> arms, eyes, hands, lungs, even your hair are in rhythm, and you make that
> perfect pass, the assist, two bodies flashing create a tiny moment of space,
> and you put the ball through it, and your teammate is there, two hands, eyes
> locked on the ball, he grabs it, pivots, lifts, scores. Game over, you won.
> How many steals did you get? How many baskets? I want to play. I want to
> play again! I miss it. But I did play. At least, I did."

> my father played basketball all his life, and coached and ref'd, until
> he tore his achilles cycling and was crippled for a long while. now he is
> fine, but he thinks he is too old to be playing basketball, and he is
> probably right. i would like to send this to him. may i?

Saturday, June 23, 2007

there is some animal that rustles around by the bay window at night. it doesn't make the noise during daylight. it sounds as if the window were open, and someone were walking on pine needles outside. it's sporadic, not continuous like i would expect of an insect gnawing on something. but it's not loud and erratic like i would expect from a mouse. but something alive is moving by the window. it's been about a week. my caretaker heard it too. please search the area.

the other helper assumed i meant look OUTSIDE the house. my note was ambiguous. i should have made clear that the source was inside.

i had the night caretaker move everything away from the window and there was no noise. i explained my new theory that it was the pages of kid art leaned against the glass expanding and contracting while responding to moisture and temperature changes. that didn't stop people from saying that i had said it was a skunk, raccoon, or cat outside.

Friday, June 22, 2007

during a radio interview, i sent this email:

i'd like to encourage people to stop using this phrase, 'on the ground'.

if you help refugees or other people 'on the ground,' where are you?
in the air, looking down on the dusky little people like a god?

the reply:

Thanks for your anonymous comment. I do, however, prefer to dialogue with someone who identifies him- or herself. How did you learn of Asylum Access and what is your connection to/interest in refugee rights?

As for the phrase "on the ground," it actually refers to Asylum Access staff and volunteers, not refugees (except insofar as they are our staff/volunteers). I.e.: We, on the ground, help refugees in Africa, Asia
and Latin America. As opposed to: We, in the US, removed from the issues facing the vast majority of refugees, help refugees in Africa, Asia and
Latin America.

If you want to make a difference in semantics, why not focus on getting
people to stop talking about "refugee protection" (the "poor little victims" approach) and instead talk about "refugee rights"?

my response:

i blog under a pseudonym because it allows me to share highly personal
reactions to my disease without Real World complications. i heard a
radio interview with someone from AA. other than appreciating
organizatioms such as yours involved in refugee protection, i have no
connection -- nor will i. while this may enable dismissal of my
feedback, i do appreciate your response, given that it indicates
reception of my idea, even though i may be seen as a crank.

'on the ground' is originally a military phrase. at least in that
context it has some meaning ('boots on the ground'). but it has
olympian temptations, implying that those who use it have access to
the higher sphere. i have watched the phrase eagerly adopted by
people in presumedly non-miitaristic NGOs -- perhaps demonstrating the osmotic power of ego.

i'll continue to oppose use of 'on the ground' and 'wheelchair bound'
rather than 'refugee protection' beccause promoting refugee rights
enhances refugee protection -- while the white man's burden surely
does not.

thanks for listening.

'i am not a kook'
-abe simpson

rather than take offense, she wrote:

I'm glad to know you heard our radio interview! And it's helpful to have some additional context for your objection to "on the ground" -- it had never before occurred to me to consider it as equivalent to "wheelchair bound" (which I do oppose). I'm still not sure I agree with your objection to "on the ground," but I'll let it marinate a bit.

Incidentally, we struggle with ways to explain our work to people who will only listen for 30 seconds. We find that most people from the US assume that "legal counsel and representation to refugees" can only take place in the US, so that even when we say that we work *in* Africa, Asia and Latin America, people still think we're helping refugees come to the US. "On the ground in the global south" is another shorthand phrase that reiterates that our work occurs in first countries of refuge, and that most refugees will remain in "the global south" rather than ever traveling to the US. (Although I should mention that we are trying to move away from the term "global south," as it too has derogatory connotations.) If you have suggestions for other shorthand phrases that could take the place of "on the ground" in the context of our work, it's always helpful to have new ideas about how to reach people so they will really understand what we do.


i said:

thanks for marinating. how about 'we help refugees assert their rights abroad -- in the places where they are dislocated.'?

she responded diplomatically to a barbed critique. maybe that's why she's in charge.


Thursday, June 21, 2007

some people will spend years lovingly telling you common wisdom and urging you to value their advice that will help you improve your conduct. but woe betide you if you think to correct any of their behavior. it only goes one way. you must be mean, or playing intellectual games to peddle your bulls**t.

no one wants to be belittled, and a line in the sand will be drawn.

Wednesday, June 20, 2007

when i ask for something while you are busy, it is to let you know what's next.

please don't say 'just wait, i can't do 2 things at once.'

to deserve that reply, i would have to be really stupid or really mean.

so please don't say things like 'just wait, i can't do 2 things at once.'

Tuesday, June 19, 2007

i once spoke with an african programmer who had been trained in the ussr. he said that they would design the program on paper and then the device would be built. the soviets, i think, did not want universally programmable computers.

Monday, June 18, 2007

years ago i wrote a short story about my lover. like typical hemingway, it was vulnerable and emotional. unaware of the story, she informed me that 'men don't need emotional love.' playboy, hustler, and breast implants were the proof. i asked if i should insult her in response. imagine me saying this about africans or jews. her statement carelessly revealed ignorant bigotry. amazing what we men tolerate for love. during the argument, she asked me to show her emotional love. i showed her the story, which i told her predated the argument. she loved it. it moved her. she called it a 'poem.' which i knew was high praise. but then she thanked me for responding to her request. my point was that she was wrong about men. her thank-you made me the exception. i still don't know if she got my point.

Sunday, June 17, 2007

my hair is so dark that the kids call it black.

when it gets a lot of sun, it turns auburn.

one time, in college, an attractive woman stopped me on the street to say it was beautiful. i thanked her and ducked into the newspaper to write an article.

such a playa.

Saturday, June 16, 2007

when my son was two, we were on the front lawn, when the large (friendly) dog from across the street ran at him. he was rightfully afraid of dogs, and i could not be certain of the dog's intent. i jumped in its way, but the dog juked me. i dove and tackled the running dog amidships. the boy from across the street caught up with the overly-friendly dog and hauled it away by the collar.


when my son told his mom that the dog had come running at him, she asked what happened next.

'then joe came and took him away.'

Friday, June 15, 2007

i took this picture about two years ago. one reader emailed the thought that it was ME ... (at about age 20!).

Thursday, June 14, 2007

'here's the line,and here's me, on this side of the line, waaaaaaving at you!'

Wednesday, June 13, 2007

i have always wanted to be a hero. i may have told you about the time i saw a guy trying to snatch a woman's purse, and how when i sprang to the rescue, my pants got caught by my bike chain. the bus came, and she got on -- with her purse.

one time, i was with my wife-to-be in a country where she spoke the language and i did not. out on my own one day, i had seen the hypodermic needle dropped by the drug addicts. one night we went to a classical concert with a mother and her teenage son. i weighed less than 140 pounds, and the kid was at most three inches shorter and 20 pounds lighter.

we left the concert not far from where i'd seen the used needle. two young thugs, drunk and with skinheads, both bigger than me, began to push the kid, and made clear that they were taking him. i thought of the needle, and the life that serves it. i didn't want this innocent kid kidnapped by the thugs.

i grabbed his winter jacket with my left hand, above the sternum, as they were dragging him off. they both leaned into my face, snarling and cursing in their language. several times i said 'please' in their language, which also means 'examine your behavior and stop this.' one of them smashed a beer bottle and waved it at me. i knew i was no match for them but i planned to deflect the first blow with speed, flexibility and what was then surprising strength. perhaps the boy and i could outrun and outmanuever these drunk thugs.

there was a crowd nearby, gathered around some film cameras. presently the director came over and dissuaded the thugs.

my wife-to-be said it was great that the director had saved the day. she didn't know that i was the hero. but the kid did. before they went in the subway, he said 'thank you' and shook my hand with a look of awe on his face.

as i was writing this, my wife reminded me that as we drove away from our wedding reception, i saw a man run up behind a woman on the darkened street, and grab her. i stopped the car and jumped out with a 'hey!' she was walking away in annoyance. they seemed to know each other. he mouthed off to me.

Tuesday, June 12, 2007

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Monday, June 11, 2007

one time many years ago i met a woman wearing a star trek uniform. it looked good on her, or whatever she had under it made for a pleasant effect. on me. she said she was a member of a crew, and had just come back from one of their missions. it's a thing fans do. the missions might be things like cleaning up a beach. i did not let her know that i was a huge fan. she might think i was a geek.

it was a gathering at eva's place. eva, a friend of friends, was a looker. and how. i wanted her. i was jealous in reaction to her having a nebbishy little boyfriend that night. i didn't like him. at all.

i dealt with my lust for eva and the trekker not by trying to set up a trey, but by not asking eva out or flirting, not calling her, and never asking her about the trekker. yes my approach sounds stupid, but maybe the pre-born souls of my two amazing children were controlling me.

Sunday, June 10, 2007


they had trouble pronouncing it, so i spelled: CHOWCHESSKOO

Saturday, June 09, 2007

when you leave a room, please put the door as it was when you entered.


Friday, June 08, 2007

some people don't reveal their hurt at the time, but save up your words to throw back at you later. in the dorm, this nasty guy implied, repeatedly, that i had absconded with his twenty. he kept making his case, leaving the charge dangling. to shut him up, i kept saying 'i stole it.' he kept repeating his case, and i kept disputing all the 'facts' in his case. i was clearly disputing his conclusion, but each time he asked me what happened to the money, i would say i stole it. it went on forever. his 'case' hinged on the testimony of a friend of mine. i wrote the friend a note which argued that nasty guy's train of thought was stupid, and said that nasty guy -- not the friend -- must be an idiot. the friend did not deny, or stand by, his alleged testimony. at the end of the year, he said 'i save little notes that people write to me,' and he pulled out my note and read it back to me. as if i was supposed to be ashamed now. but it still made good sense, so i remained blasé. we are the brides of our words. after you say it, remember: you married him.

Thursday, June 07, 2007

i hate ivy. i used to aggressively trim it back where it climbs over the fence in the SW corner of our yard. !and i found and plucked the many seedlings that it spreads via airborne spores! it's been well over a year since my last patrol, and the evil weed is back. would someone please rip it out with extreme prejudice? we have shears large and small.


Wednesday, June 06, 2007

i was the youngest. one time, my middle sister said, 'mom and dad stopped having kids after you because you were so awful.' immediately, i let my words fly, hoping that they might form a sharp retort: 'they wanted a boy, and you weren't good enough, so they had me.'

Tuesday, June 05, 2007

they had this rule in the maternity ward against food. this is stupid and favors doctors' fears. i have a better rule: no pregnant women allowed in the maternity ward. then there would be NO complications. my brave wife spent, i dunno, 16 hours laboring my son seven years ago. i smuggled food in for her. i hid a half-eaten sandwich in the cabinet below the sink in the bathroom. i'd fled there to evade detection. as far as i know, it's still there, though i'm sure they clean.

when daughter's turn came, there was so much noise from the back seat that i thought the doula might take the delivery in the car. we'd barely gotten up on the couch when the baby popped out. it was dinner time.

Monday, June 04, 2007

i had a friend who had left her husband after he filled the garage with undelivered newspapers from his newspaper delivery job. after she challenged him about it, he'd become upset, and said, 'how could you let me do this?!' this line became an inside joke between her and her hip new boyfriend.

they used it as shorthand to signify recognition of an attempt by someone else, or themelves, to transfer responsibilty.

no, i'm not asking you to look within; this is a story about other people. if that's an offense, i ask you: how could you let me do this?

Sunday, June 03, 2007

i was able to ride in the van with the chair tilted back to avoid neck pain. we went to see an ENT doc. he said that i seem to be breathing well without undue interference from secretions. he said that there there was no rush 'this month' to perform a tracheostomy in support of going on a ventilator.

Saturday, June 02, 2007

i can almost never scratch my itches. i need help. i can move my head, though not always lift it. there are two types of scratchers: those who will let you move the itch to where they are scratching, and those who have a pattern they want to follow, and will adjust their scratching to complete the pattern, thus avoiding the itch.

Friday, June 01, 2007

i have more energy, and my poop life has greatly improved since i started taking the ALS vitamins that diane found. they're expensive, $300 per month. but this is the first thing that has improved my symptoms. i noticed a 'new' ability i was tempted to credit to the vitamins: when on my back in bed, i can now lift my left leg and allow the knee to bend, bringing the foot down flat. this 'new' skill is likely a case of learning a new technique, as most of my 'improvements' are -- because my right arm continues to deteriorate. the stuff is called 'founder's life rx' and is made by pro-caps labs.
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