some adults have this theatrical way of laughing 'oh-ho-HOH!' when they are talking to a child who scorns or corrects them. it signals to the other adults: 'we are the insiders, we judge this child, whose attempt to be taken seriously is comical.'

i remember that my aunt alta made a habit of this.

one time, some man from my father's work was at our house. i was short and skinny and looked younger than i was -- while being smarter and more widely read than most kids a few years older than me,

'what's your favorite tv show?' he said in a theatrically friendly voice, bending down to show that he was engaging me at my own level.

'uh ... i guess ... star trek,' i said, hoping to end his script.

'and who's your favorite character, dr. spock?'

'mister spock,' i said acidly to his royal fakeness.

'oh-ho-HOH!' he said to my parents, 'it's MISTER spock! i got it wrong!' laughinng to show that i was taking myself too seriously.

when i was a kid, golda was on tv a lot, and i thought she looked exactly like my grandmother, who was an arab. i liked the idea of my grandmother running a country, and in my mind the two people became one.

my grandmother was a forceful woman with a strong sense of humor. golda once said to a general or great zionist something i consider hilarious: "Don't be so humble; you're not that great."

when the yom kippur war happened in 1973, i knew that a country we supported was at war. i wanted to cheer our side like at a sporting event. my father tried to explain the dangers of superpower engagement, but i was 404. one day we were watching on tv some egyptian and isreali tanks filmed at long range in the desert. i wanted them to fight, but no such luck. 'i hope our guys win!' i said. my mother said 'we hope no one wins.'

i am completely against nuclear power, because there is nowhere to put the waste. i am also a fan of rocketry and space science. i think that crash-proof containers could be made, probably from advanced ceramics, to support launching the waste into space beyond our solar system. where is the nearest black hole? send the empty containers to the power plant, then transport the waste in the containers to the launch site. i am also not a chump, so before you start building new nukes based on this 'solution,' show me it will work by sending ALL the world's waste into space.

in high school i asked a vietnam-vet teacher, 'what was it like?' he said:

'when you're sleeping on your back in your trench, and you wake to see the tracers coming in, and see the answering tracers going out, and this all is criss-crossing over you ... it's the most beautiful thing you've ever seen.'

i remember as a small child objecting every time i was told to wash my hands. 'i did!' i would claim, but they would inspect.

i remember not staying seated for meals, and one time my mother lifted me back into my chair, and my leg prevented my descent. i always sought to replicate that, but once wise to it, she took countermeasures.

'i'm done!' i would say, meaning: 95 percent of it is still on the plate, but i'm done with it.

whining 'i'm full' worked better, but not 'i'm full. what's for dessert?'

before going to MPU, while still in high school, they had me write an essay to assess my writing skills, and determine whether i had to take bonehead English. my teacher arranged through a friend for our whole class to take it and be graded by the actual MPU readers. on the 'verbal' portion of the SAT i had either a perfect score, or one notch less (because there had been a question where i saw the answer they expected, which was wrong, and i chose to answer correctly). in that first essay, i ranted about excessive government environmentalism, and how they would one day make a rule against walking in the woods. it came back with a c- grade. i decided that this meant that the people at MPU were liberals, and decided to be more crafty on the real test. i happened to read an in-depth article about the AR-15 being superior to the M-16 they adopted after politics mucked with it. the hero of the article was barry goldwater, but when i officially took the essay exam for MPU, i stuck to the facts, using the magic phrase 'no matter what your politics are....' after the test, i even argued the point with a green beret vietnam vet teacher, who told me i was wrong. i figured 'they' had deluded him too. i was not required to take the remedial class.

the hole where my PEG comes out was growing a flange that was painful. 'hypergranulation,' they said. a nurse burned it away using silver nitrate. that hurt too. this photo was taken a few days later.

my four-year-old daughter wrote me this note two months ago. the green smudge is from a heart on the other side. tell me what the note says. keep in mind that young kids often mirror their letters along X or Y.

observe the atrophy in my right arm, the, ahem, good one.

at age 20 the same arm looked like this:

may 21, 2007

dear president clinton,

i hope that this letter's salutation soon becomes ambiguous.

pardon my neglect of the shift key; i have ALS, aka lou gehrig's disease. i cannot hold up my head, and i write this letter with one feeble hand while slouched in a wheelchair, wearing an adult diaper.

i was a journalist, and then a computer programmer.

we bought three copies of your autobiography: one of which i lost on a trip to my parents house when i could still hold books and walk, one a gift from my wife (who is as remarkable as yours) and one audiobook downloaded from itunes once i could no longer hold a book.

my beautiful wife, who is the reason our two children (4 and 7) are whippet smart, reads to me from your book, as do several friends from the miraculous support group set up by our wonderful neighbor.

the support group has brought out everyone's better angels. and if it is true, as my friend visiting from hawaii said, that many people love me, then it is just a reflection of the basic human impulse to GIVE ... to anyone halfway decent who is in need.

this same impulse is not entirely unnoted in clinton politics. that may explain why my night attendant, a strong mother of five who advises others with wisdom on the values of work and education, says she misses you SO much. another attendant who immigrated from ethiopia 10 years ago has been reading our copy of your book aftter plucking it, without asking, from amid my medical cluttter. likewise, a third, a tibetan, is also reading it. unprompted, he exclaimed "this is fantastic reading." among the three, they have five jobs -- that i know of.

you can be proud that your embodiment of american values resonates with hardworking americans both established and new.

this man does an uncanny impression of my father's speaking style, facial expressions, and gestures.

sometimes i do ESL for my caregivers:

sounds like two-pays

it means fake hair for men. over the baldness.

i dreamt that ronolulu was here and we saw an ad for a hawiian seaside resort promoting itself as a place where guests will frolic with wild dolphins, which are 'invited, herded, and forced to participate' in the games. ronolulu and i looked at each other: 'forced to participate!?'

how can we make the pillow stay?

tp is not good for drool, it falls apart and sticks to my lips

the blinds can be closed near the top. please get the sun off of me.

and raise up the clamped end of the towel

please estimate how wide this hole is. include your reasoning.

they may both be geniuses but i worry about him b/c he must cope with the stress first. or they may just be gifted, which is better.

i love my wife.

so after two full days of blogger.com appearing to be down, i went straight to the site and was able to post. maybe there is something i don't know, but should, and the site did not alert me to. therefore blogger.com stinks, QED.

Son,

You have heard of genes, which are how parents pass on a mix of their physical traits to their children. This is why you and Sister have hair color lighter than mine but darker than your mother's. The scientists who study genes are called geneticists.

There is no gene that causes my nerve problem. None of my ancestors have had this problem. My problem happened randomly, or by chance as far as we know, because no one knows what causes it. The scientists who study the causes of diseases are called epidemiologists. They have been looking for over 100 years for the cause of this problem. I am not the only one who has had this problem. The epidemiologists and geneticists think this is one of the most interesting diseases because it does not follow expected patterns -- children don't inherit it genetically from their parents like hair color. With many physical problems, there is an inherited factor. For this reason, scientists studying this problem have looked very hard for a genetic association between parents and children. There isn't one. And there are no known factors like food, birthplace, or job which might explain it.

What this means is that Sister and you do not have a bigger chance of getting this disease because of me. If anything, you have LESS chance.

I love you both,



Dad

wednesday morning, i turned my wheelchair to watch my daughter. this surprised me because i usually have no energy. later that day, i positioned my wc to try to watch the kids and their mom in the back yard. i even dealt with some snail mail and a huge, oppressive backlog of email. also, i arranged for a semi-monthly payment to a darling and very loving friend of ours who found some vitamins -- mostly a huge dose of antioxidants -- that might help with ALS. she ordered them with her own money, and had to be convinced to let me pay half. thank you diane. i started taking them april 29, on diane's last visit.

as my goodly night attendant (not the one who dropped me and cut me under my jaw while shaving me) got me up thursday morning, i thought what a meat puppet i am -- she has to walk my feet across the carpet with her own, so completely useless my own muscles are. but once she sat me in the wc, i used my own legs to push myself back into the seat.

maybe the new vitamins are helping. everyone who has ALS should also have an intrusive, overly-giving jewish mother as a friend.

before you start offering me opportunities to further expand my 'recovery,' -- even start my NBA career -- stop. don't. this could be a blip, or due to the weather. i don't need the stress of declining hopeful suggestions. if i improve, i will let you know. don't push.

i listened to the audiobook 'lamb' -- a spoof of the early life of joshua of nazarth. i spell instructions to my night attendant, like 'move my head.' i woke with an important one. 'water into wine,' i spelled, thinking she might not get that, and it should be rephrased. 'like in the bible?' she said. 'i must have been dreaming,' i wrote. she is the one who dropped me.

i had to pee before they got me out of bed. the (other) night attendant brought the urinal jug and placed it open end down over my plumbing the way you would use a cup to capture bee on a picnic table, or a fly or an ant. she is the one who dropped me. i was on my back. think about gravity. each time i shrieked and grabbed at the jug, she withdrew it. my observant wife came in and told her i didn't want the urine to flow down onto the bed. did not compute. she kept trying to cap it. she gave me the word board. 'think,' i pointed twice, then 'look ... think.' 404. pointing 'will it go up' (no time to spell 'flow') had no effect. mercifully, my merciful wife then suggested turning me on my side, knowing full well that i have yet to pee antigravitons.

even the best people can have bad days. and few people like to be corrected. i was being showered by two very good helpers, and the one pushed my head back so far that it gave me neck pain. i kept yelping and trying to swat her forearm. yes, she has already been told about my neck. to make a long story short, my attempt to explain via the word page drew sighs and laughter. they commiserated. the one kept saying that she was trying to prevent soap from getting in my eyes, never hearing that she gave me pain. always framing it as a false choice. with no memory of other times she kept soap out of my eyes without hurting my neck.

'Hot Rod Lincoln' was the first rap:

My pappy said, 'Son, you're gonna drive me t' drinkin' ...
If you don't quit drivin' that - Hot ... Rod ... Lincoln!'

Well, you've heard the story of the hot rod race,
When the Ford and the Mercury were settin' the pace.
That story's true I'm here to say,
Cause I was a'drivin' that Model A.

It's got a Lincoln motor and it's really souped up;
That Model A body makes it look like a pup.
It's got 12 cylinders and uses them all;
And an overdrive that just won't stall.

It's got a 4-barrel carb and dual exhausts,
4:11 gears that really get lost -
Safety tubes and I'm not scared,
The brakes are good and the tires are fair.

We left San Pedro late one night;
The moon and the stars were shinin' bright.
We were drivin' up Grapevine Hill,
Passin' cars like they were standin' still.

Then, all of a sudden, in the wink of an eye,
a Cadillac sedan passed us by.
The remark was made, "That's the car for me."
But, by then, the taillights wuz all you could see.

Well, the fellers ribbed me for bein' behind,
So I started to make that Lincoln unwind.
Took my foot off the gas and, man alive,
I shoved it down into overdrive.

Well, I wound it up to 110;
Twisted the speedometer cable right off the end.
Had my foot glued right to the floor;
I said, "That's all there is - there ain't no more."

Now the fellas thought I'd lost all sense;
The telephone poles looked like a picket fence.
They said, "Slow down, I see spots."
The lines on the road just looked like dots.

Went around a corner and passed a truck;
I crossed my fingers just for luck -
The fenders clickin' the guard rail post;
The guy beside me was white as a ghost.

Smoke was rollin' outta the back
When I started to gain on that Cadillac
I knew I could catch him and hoped I could pass
But when I did I'd be short on gas.

There were flames comin' from out of the side;
You could feel the tension; man, what a ride.
I said, "Look out, boys, I've got a license to fly"
And the Cadillac pulled over and let me by.

All of a sudden a rod started knockin';
Down in the depths she started a rockin'.
I looked in the mirror and a red light was blinkin';
The cops was after my Hot Rod Lincoln.

Well they arrested me and put me in jail.
I called my pop to make my bail.
He said, "Son, you're gonna drive me t' drinkin',
If you don't quit drivin' that - Hot ... Rod ... Lincoln!"

you can modify these for width, play with fonts as needed, and just print. color differentiation possible in background with marker pen. ask me please before changing words. i think there will be 30 new spaces. here are 29 items:

WANT
WINDOW
SHOE
GUESS what i am saying
SOCK
PRIME IT -- let a few drops from the bag flow out the end of the line
AIR CUT OFF BY THAT!!! no, no! STOP!!
CHARGE CHAIR
PLEASE
LIGHT
TURN ON POWER STRIPS
TURN ON COMPUTER
MEDS PLEASE
ROLL ME TO LEFT SIDE
BRUSH TEETH, tongue, roof and cheeks
CLOSE DOOR
LIFT FOREHEAD -- don't push so far that it hurts my neck
ETR?
DON'T GUESS
I AM CRIPPLED, NOT RETARDED
DON'T INTERRUPT
THIS WILL BE A LONG SENTENCE
NEVER TOUCH THAT
DO NOT GRAB RIGHT ARM
HELP ME SIT BACK INTO CHAIR
I AM SLIDING OUT
GET MY EXPLICIT PRIOR CONSENT for each thing
I SAID NO AND I MEAN IT
I AM AN ADULT, NOT A CHILD

if i assert that this photo was taken on planet mars, you would say...

my kids are now asking for and watching classic star trek episodes they have seen before ... reruns!

bob

This blog knows me as Ronolulu. BH and I have been friends since we met in 1982. We played board games, went backpacking, had adventures, shared an apartment, watched each other’s back, kept track of each other’s lives. BH asked me to be his best man. I was proud to do it. BH and his wonderful wife getting hitched. BH was so much in love he couldn’t stop crying at the ceremony. The good kine tears.

So ~1200 days ago, plus or minus, BH sent me an email. He said “look at this blog site.” It is going to tell you things about what is going on with me. Something is up with my brain. We’re not sure, but they think I have ALS.” I was just then going through a number of deaths in my family. I looked on the web to see what ALS meant. I couldn’t stop crying. You know what I mean.

The most important points BH made then and continue to make today is that (1) no one, absolutely no one except BH or his wonderful wife talk to their children about his illness. The second point was that the blog remains anonymous. I respect that religiously.

I had a chance to visit BH and his family two weeks ago after. Situations kept me away longer than I wanted but couldn’t be helped. As you can imagine it was pretty tough. I was heartbroken before I came to the house. I couldn’t sleep at night before the trip. I cried thinking about BH, our friendship, his life. I talked about his story on the airplane to a lady, until I had to stop. I just had to stop.

I came to the front door, wondering how I’d feel when I walked in. BH’s assistant (one of three for a 24 hour period) answered the door. In the background, through the living and dining room I saw a man leaning back in a wheel chair. I couldn’t see his head right away. I walked into the room and there was BH. In a full tilting electronic wheel chair, his feet on the table in front of him to rest his legs, his head fitting in a head rest but not wearing a head strap. A supplement bag was dripping food through a tube to his belly. He was having lunch – food through the feeding tube. It made me feel a little uncomfortable, but it was ok. BH controls the amount with the clamp wheel on the tube

A towel was draped across his chest, under his chin and a tissue was between his lips. His daytime caregiver, a very nice lady from Eritrea, was folding and replacing tissues in B’s mouth. He is constantly drooling. The towel needs to be turned or replaced because it gets wet. There is a suction machine that B needs. The message board has a special square that says “Suction.” Be sure to suction both the lips/gums, the tongue and be sure to do the roof of his mouth. This is the same guy I know. His hair is full but looks like when you’ve had the flu for a few days. He has a bit of beard growth.

I was nervous. I made a couple jokes. The first thing BH told me by writing on his sign board was ‘no humor.’ It sometimes makes him choke. Regarding the sign board – it is an 8.5 x 11 laminated piece of cardboard. One side has common words (me, my, mine, you, your, yours), suffixes and a section that can be used for pointing to letters and numbers. The other side of the board has commands in bigger squares, such as “Suction” and “Leg.” Things that I can’t remember. Basic commands to get through the day and night. On the bottom of the sheet is a single line. It says “Please say each item as I point to it.”

I learned to let him finish once when I thought BH was done. Um, he wasn’t. And he told me so. We laughed a bit. BH can rock his head no and yes. And will holler if someone isn’t paying attention. Or not listening to what he is saying.

BH asked me to make an entry in the blog. This is it. We first discussed being objective, but subjective will come to play whenever I write or think about his situation. How did BH tell me? By pointing, letter by letter, to spell the word ‘objective.’ This is a hard request, as so much emotion is tied up in this situation.

The first night was very difficult. BH wrote about this in his blog. The regular care giver could not make it, so the afternoon person and the night time person were new. BH became more and more frustrated having to teach them, even though wife and I were both there for a time. Then wonderful wife went to a book club. Things weren’t going well. B wrote “I hate first days.” That’s easy to understand. Shower, clean, change, go to bed. But how do we hold your head? The left arm needs to be on the armrest. All the fingers, but not the thumb. The thumb must rest on the side. And be very sure to take care of the left foot. Make sure it is straight. Don’t let it curl underneath because it “hurts a lot.” “I don’t trust you to hold me and put me in bed. You make me nervous.” From an earlier entry where BH was dropped, that is the problem.

I tried to be a soothing. Find out what BH needed. He kept saying “wife – now – wife – now – wife –now.” I called her. I asked if he could handle another hour with the caregives. “No” he wrote.

I tried to help negotiate. "You don’t get me,” he wrote. And there is no doubt this is true. Heck, I didn’t always get BH when we spent more time together. That’s what makes it fun. Wonderful wife came home and with the CNA got BH to bed. I stood on the other side of the bed to hold BH’s head as he was laid down on the pillow. Not too far back, not too far forward. Sorry bud.

I can’t really separate Saturday and Sunday. I hung out at the house. We read together for a few hours. Clinton’s biography. I learned how Bill and Hillary met. I did a couple errands for the family. Stuff that just needed doing. There is strong support group around the family. But things always need to be done. I played with the lovely kids. While the girl was on a playdate, the boy and I learned to juggle. BH asked us to play in his room. We did for a while, until BH got tired. It was a hard moment. I know that it is good to see his boy happy, playing. I’m glad I could laugh with boy. I love my friend that I could play with his son. It messes me up even now that BH wasn’t the one playing.

By Sunday evening I needed some time. I went to a guitar store, then went to dinner. A place where BH and I had dinner years before. When we were just starting to work. And we spent too much money that night. I told B when I got back to the house. His response was to rub his thumb and forefinger together. Yes, we both remembered it was expensive. This time I had a strange feeling while eating. I wrote in my book – “Why do I feel like everything with waitress brings me is like another visit from the nurse – random and possibly uncomfortable if not painful.” Maybe it was the wine.

The last morning in the house BH needed to take a shower because there was urine in the diaper. He can usually pee in the bottle, but for some reason he didn’t. If I were a conspiracy theorist I’d say he waited until the Nurses Assistant was gone, then peed the diaper just to watch his sister and me attempt to bathe him.

[bh: two people are to safely move me into the shower chair safely. the CNA cannot do it alone.]

I was nervous. Neither sister or I had done this, not to mention without a CNA. So we went through every step. The chair placement, the standup, the chair transfer, pulling down shorts, getting socks and shoes off. The order of the arms out of the t-shirt so the neck isn’t hurt. Don’t bend the left foot. Keep the body on the sticky web, not the smooth plastic of the chair. Get the strap on so BH doesn’t fall out. OK, we got to that part. We asked about the water, the soap, the washing, the drying. BH likes the water at Max Temp and Max Pressure. It was good that Sister and I went step by step, bit by bit and then write down all the instructions. One had to be after another. And now the CNA’s have specific instructions.

Sister said “You can wash him.” OK, then you put on B’s socks and shoes afterwards. So I bathed my friend. I hadn’t done that before. But I’d do it again, every day if I could. Just a friend helping a friend. Wet the man down, soap the man up, wash the man, rinse the man off, dry the man with a towel and finish with a blow dryer. Get him into a clean warm shirt, diaper, shorts, socks and shoes. Before he gets cold. Get him into his big chair. Whew. We all did a good job and we were all tired from the experience. And we didn’t drop BH.

What else should you know? Like how smart of a guy BH is? He once traveled to Portland Oregon to visit, but had left my address and phone number at home.

[bh: how smart was that?]

I had just moved to temporary housing and told him I was in a big gray apartment house. Only 15 minutes past the time he was to arrive, he found where I was staying. Tracked me down in a completely new city. Or how skinny and hard bodied he is? Or his command of language and concept? We all see that on the blog.

B and I spent a few private moments together before I left. I said something like “this world sucks.” B shook his head no. Then I asked, as we have before, “ride it until the wheels fall off?” BH said yes. We held hands. I know we were both being brave. I turned, walked out, gave hugs and smiles to the family and drove off. As I left I thought “be kind.” And “show love.” The rest of it is details.

my cinemacentric pal put the 1974 blaxploitation film 'foxy brown' on his favorites list, and i bought it on itunes for ten bucks. as of this writing, i have not seen all of the download. but it turns out that i remember some scenes, due to having seen it as a child:

-- her brother calls her while she is sleeping and we see that actress pam grier is very stacked indeed in her bra.
-- the implied blowjob scene.
--the manifesto scene where the street guy says that drugs are slavery.
-- she shoots off a piece of her brother's ear.
--the scene where she throws the corrupt honky judge to the floor and yells at him.

i watched it on tv when my father declared 'we're gonna watch this movie.' like it was a big event. my mother boycotted. when i reviewed the plot with him the next day, she remained silent. i don't recall where the middle sister was. probably she had been advised by mother that it was not for her,

he would never admit to wanting to watch a hot babe in a racy movie, so he pitched it as sociologically valuable. and maybe to help cure my gayness potential.

in '75 i was 12. i already had an active erotic imagination. i don't know why i reacted to it as an action movie and not a dirty movie ... then forgot it, unless it was because my father pitched it as sociology and could not conceive of him watching a dirty movie -- hence it MUST be action.

i now recall supporting her anti-drug vendetta the way i would have supported the star trek crew in one of their missions. the manifesto scene where the street guy says that drugs are slavery was the key to this.

when i proudly discussed our movie in front of my grimly silent mother, i focused on the ideas, not the fine booty. my father must have decided i was a homo.

ok, now that i have seen all of it, i know that it is a violent revenge tale. sure, there are a small number of scenes where you see more of pam grier than you would of julie andrews, but it's an action movie.

i want to tell you about Regina Spektor. she writes and performs her own music and she's really good.