Tuesday, July 31, 2007


please read a tripods book and tell your aunt and me how it compares to harry potter.



Monday, July 30, 2007

should brainhell stop blogging?
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no, i won't respond to comments on this post.

Sunday, July 29, 2007

it is very hard to be a crip. don't praise me.

Saturday, July 28, 2007

i need air. or i die. simple.

i make so much excess saliva that being on my back can drown me. that's why i demand to be rolled to my left side, so that i can drain out. and that's why i get so strident when i'm on my back. as the best night caregiver, i thought you knew that.

being told 'relax' DOES NOT HELP!

being made to wait for you to lift me until my left leg relaxes is frightening and pointless -- each time you lift me that left leg always sticks out straight. and today the bed was too high for the leg to touch the floor.

scolding and lectures DO NOT HELP.

it must be hard to have a crip, who you are lovingly trying to help, shriek angrily at you. i am sorry.

Friday, July 27, 2007

thanks much to you guys for trimming the roof. i was here when you did it. but since then there has been a noise from the roof when the ind blows, but not a whistle, more like something moving. check it out?

Thursday, July 26, 2007

when 'sorry'
becomes a taunt
the seeds of adult thinking
are in

Wednesday, July 25, 2007


You are a mammal. Mammals have hair. Have you counted how many mammal hairs you have?




I found the rock while walking on a beach with your mom on our honeymoon. I don't know what made the holes, but my guess is that the original rock was formed of two materials, one of which was softer.



Tuesday, July 24, 2007

empathy IS intelligence.

Monday, July 23, 2007

but yesterday the exhausting coughing fit went from 1130 AM through 10 PM. i think this is because we stopped the rhinocort -- thought to promote thrush -- in favor of an antihistamine. but i think the antihistamine only masks the cough, which must later come out. i have restarted the rhino.

Sunday, July 22, 2007

every afternoon from 430 to 700 i cough severely and need much suction.

Friday, July 20, 2007

the first time i heard on tv the phrase 'you're dating yourself' i thought it was a reference to onanism.

Thursday, July 19, 2007

last night, i was told that she had died. i never met her. she was nice.

Wednesday, July 18, 2007

10/2/2002 06:04:02 PM

Tuesday, July 17, 2007

when i was 21 i worked as an attendant for a quad who could move his toes ... a bit. i asked him, 'what do you do when you get an itch?' he said, 'they have a series of stages and then fade.' i said, 'how awful!' at least once a day i am thankful that he was right that they fade ... eventually.

Monday, July 16, 2007

i must explain three times and they'll do it wrong three times before saying that they didn't understand the instruction.

Sunday, July 15, 2007

Preparing for and Getting brainhell to Bed

brainhell needs to take his nighttime meds by feeding tube at least a half-hour before getting into bed. Please try to give them to him no later than 9 p.m. The meds, which will already be prepared by the morning caregiver, are in a small container near brainhell’s laptop computer. Mix them with 8 oz. water, give it to him through his feeding tube using a syringe, and then flush with 2 oz. of water from the same syringe.
Just before bed, brainhell needs to have his teeth brushed. Please also use the tongue-scraper to scrape as far back on his tongue as possible; then swab his mouth with the Nystatin liquid.
He will also need to use the urinal.

Please put the following things on the left-hand side of the bed just before brainhell rolls over to the bed: the word page, the hand bell, and the hand control for raising and lowering the foot and head of the bed. Put the folded green fleece blanket on the wedge; that will be his pillow.
Press the green button on the box at the foot of the bed to start the air flow over the mattress.

Raise the head of the bed to a 35-degree angle before transferring brainhell to the bed.

Katherine will do the transfer to the bed on her own. When Tiffany or Trina is on duty, she will need help. Leave brainhell’s shoes on for the transfer, as provide stability in the brief moments he’s standing. The transfer should be a squat-transfer, which Tiffany or Trina will do, from the seat of the wheelchair to the bed, landing brainhell’s butt at the place where the head angles up.

Move the wheelchair backward and out of the way; then you bring brainhell’s feet up while Tiffany/ Trina gently lowers his head and shoulders to the wedge. Put a rolled undershirt under brainhell’s chin. Take off his shoes and lay him out straight. Pull him up towards the head of the bed, then turn him gently onto his left side, holding him at the shoulder and the hips.

As much as possible, his hips and shoulders should be in a straight line. When he’s on his side, his hips should be “stacked” one right over the other. I adjust his hips with two hands, one underneath him at his waistband, and the other under him on his thigh. I pull his left hip gently back toward the closet. We use a pillow, tightly folded lengthwise, to support brainhell’s back when he’s on his left side. It should be placed between his shoulder blade and his coccyx and tucked in really tightly under his side. A folded towel can be used along with the pillow, if extra bracing is needed.

When brainhell wants his left shoulder adjusted, you’ll need to grab his left shoulder from underneath and shift it backward, toward the closet, “stacking” his left shoulder more directly under his right shoulder.

When brainhell points to his right ear (the one on top), he means that the left ear is uncomfortable. Please reach under and flatten out his left ear.

Sometimes brainhell’s head needs to be lifted gently and moved just a tiny bit back, towards the closet.

The undershirt under his chin may slip out. Reposition it under his chin, all the way back to his Adam’s apple. A small towel or washcloth needs to go under his chin and on the wedge to catch drool.

brainhell’s legs need to be bent in order to relax his leg muscles. While he can move and bend his right leg himself, you will need to bend his left leg up and far forward, so that it bends both from the hip and the knee. Hold it in place for a few minutes, squeezing the knee joint if necessary, to allow the muscles to relax.

brainhell will want a rolled-up undershirt in his left hand, to prevent the fingers from curling up too much.

Sometime in the middle of the night, brainhell will want to turn over onto his back to sleep. He’ll hit the pillow behind his back as a signal to you to move it.

After brainhell is settled in bed, check the level of charge in the wheelchair battery. If it’s down to the yellow, plug the charger into the wall, turn it on (switch is on the back), and plug the other end into the right arm of the chair.

Saturday, July 14, 2007

true to form, last night your agency sent an inexperienced sub. and passive, dim, and recalcitrant. i am tired of being subjected to your worst.

lash out

Friday, July 13, 2007

I remember when I was a baby and I had learned to stand but not walk. I wanted to make my way over to some object, I think it was a bookshelf. I would stand with my arms out in the cruxifix position, and turn my head to the side and towards the object I wanted. My feet would be in the normal forward position as if I were going to walk forward. Then I would rock and bob a little bit (thus introducing 'noise' into the system). This would cause my feet to shift and I would slowly make my way toward the intended object. I remember getting there. I also remember my parents seeing this and commenting to each other about the technique. I understood their words, and that they were speaking as if speaking my thoughts regarding my strategy.

Thursday, July 12, 2007

he used to scowl and ignore us kids when we would say what we saw was wrong with the thing he was fixing. he would then spend half an hour to half a day working the problem. then he would emerge and tell a long self-congratulatory account of the fix. the cause would be what we had told him at the outset. i remember that more than once he used th exact same words to describe it as we had.

Wednesday, July 11, 2007

my upper left arm now always aches. it must have gotten so weak that its position changed.

Tuesday, July 10, 2007

one summer we were watching bjorn borg being drubbed by some guy on tv. maybe conners. or maybe it was the other way. the event was pre-recorded live. anyway, i saw in the sports section that the drubee would win. i said he would. my cousin jeff instantly challenged 'wanna bet!?' i said okay. he went to get his 50 cents. i asked his mom if it was okay, given what i knew. she said yes. the drubbee won, as did i. what lesson do you think she was trying to teach him?

Monday, July 09, 2007

i wonder if a tube held in my mouth would carry excess saliva away.

the monty python drool bucket was funny. this is for real.

Sunday, July 08, 2007

try spelling out instructions to helper people while they're choking you. i did that this morning.

my nephew the navy recruit called his mom my sister to say he'd received his assignment: an LSM transporting marines to iraq. 'and when they go, you go with 'em!'

and it's not even april.

actually, he'll be on a destroyer based in an american port.

Saturday, July 07, 2007

recognizing that a statement is false does not mean that you think the opposite is true.

i worked in the dorm kitchen. a pal tried to take me through the steps to god. the last question was 'and if this all-powerful creator existed, wouldn't you want to worship Him?'

no, i said, power does not equate to goodness.

after that he stopped trying to give me the gift.

your faith may be turn out to be 100 percent correct. so what?

the 'afterlife' conforms perfectly to a convenient lie.

and don't kid yourself that without your faith, i cannot be good, or know love or joy.

i possess the spiritual truth. believe me.

i accept you as a person of faith, and i'm glad you explained it. and i do want to hear from you, but must you praise god for everything, so often, to me?

Friday, July 06, 2007

how much will YOU donate to the clinton campaign?

Thursday, July 05, 2007

how much should brainhell donate to the clinton campaign?
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Wednesday, July 04, 2007

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."

She lifted her head and looked across the street at the barn that had been converted to a auto mechanic's shop. "But I can't say that," she said.

A woman in her fifties looked at them through the windshield of a pickup.

After that they went to the car and drove down the road a mile to a farm where tourists pick their own produce.

The first thing was an herbarium where the sun was filtered through high criss-cross wooden slats and the ferns and vines arched up overhead. Behind chicken wire there were large aviaries with birds. There were some kiwis. He thought they were kiwis because they had no tails. But they were young quail and when you saw them walk you recognized that.

A big red parrot was kept in a tall cage with just one baby quail for company. The quail ran nervously back and forth on the floor of the cage while the big parrot gnawed the wire at the level of Sara's eyes.

"You're all alone with no one of your kind to keep you company," she said, then laughed. "Of course you're crazy."

They went out to pick berries but the vines were dead and the brown flowers hung down.

Neil thought to himself: Don’t think about the symbolism of that.

But it was she who merrily said, “Here we are in the field of dead berries!”

She saw the ironic things the same way he did, and was willing to say them. They had felt other things together and she had been willing to name those and say them too.

That was why he loved her. She was willing to see the sadness. And the tenderness that must come from it. He wanted to turn to her and say that, to say, "I love you." But he didn't want to hurt her.

So he turned to her and took her in his arms instead.

"When you hold me like this I could never, ever break away," she said.

He held her face to kiss her but she turned away at the last instant. "I'm not ready yet," she said. "We can't do this all at once."

He put his thumb on her collar bone and touched the soft skin there. She sighed and moved against him.

I wish I could let her go, he thought. I wish I could let her go.

"Just tell me it won't be like last time," she said.

"I promise it won't." But it will be some kind of hurt, he thought. Maybe not as bad, but some kind of hurt.

"You took yourself away so completely," she said.

"You were so crazy. No, first you were hopeless, then you were mean, and then you were crazy."

"But now you know more about me. You won't be so scared this time."

"I'm not scared of you anymore. I'll let other people be scared of you. I love you."

And then he had said it and whatever happened next or did not happen was not important.

They went around behind the trees with the tiny apples and watched the dragonflies from a bench with a broken back.

i tthink the author is
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Tuesday, July 03, 2007

I remember crawling. I believe it was one of the first times I successfully crawled. I was so happy about it that I tossed my head up and roared with joy and my mother. She hopped down on her hands and knees, her face within a foot of mine, and roared back happily.

Monday, July 02, 2007

I was anywhere from 5 to 7, and my friend Randy and I were playing in the dirt to the left side of the driveway, towards the bottom, not far from the poppies. He was telling me about church. "Church?" I said, "You mean you believe in God?" "Yes," he said. "That's crazy," I said, "If there was a guy with a white beard living up above the clouds, the astronauts would have seen him, and they didn't." Randy neither demurred nor assented.

Years later I would learn of an amusing Russian phrase from the Soviet period: Kosmonoftu scazali shto Boga nyet! (The Cosmonauts say there is no God.)

Sunday, July 01, 2007

name the two u.s. First Ladies who did not change their names when they married.

eleanor and hillary.
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