Monday, July 31, 2006

Inside job?

The facts concerning 9/11 are very disturbing, and indicate that there is much that we don't know. How do you counter the 'someone would talk' view if you think it's an 'inside job?' The inside would have to be VERY large.

Sunday, July 30, 2006

The addition

The expensive addition to our house is almost ready for move in. We need to order the carpet we've agreed upon, have it installed, then get our big strong friends to move our things into the new bedroom. I have been using the new bathroom since 7/21. The wheelchair lift was installed, but is of marginal utility since there needs to be a bit more concrete laid in two spaces so that my chair can readily transit, and because the chair itself seems to have something wrong with it. It is losing strength. Perhaps it has ALS.

Today I started the AM and PM ceftriaxone infusions. Thursday I'll begin my three-day break.

Saturday, July 29, 2006

Scary dream

My hardworking wife says that she was driving my darling daughter somewhere, and the girl said, from her car seat "I had a scary dream last night."

"Aw, why was it scary?"

"We were all driving to a place in the car, and before we got there, Dad got out of the car."

"Aw, how did you feel about that?"

"It was sad. I wished he could have come with us."

After I heard about her dream, I spent a long time crying and roaring into pillows.

I wish that rage could cure this disease.

Friday, July 28, 2006


Inside the house, I use the wheelchair all the time now, rather than teetering around on my feet. It started when were were staying away from home last week. My son made an imitation of grabbing handholds and said "Dad, why don't you 'walk' around?" I said, "It's easier," meaning in the place where we were staying. But he said "Oh," in a way that seemed to indicate that it would be OK if I used the chair always.

Thursday, July 27, 2006



Thank you for your continuing kindness to us.

Many people when speaking of the addition use phrases like "...move brainhell into it." But my wife and I will both move into it. This kind of talk makes me feel like an object, and might not help in framing the kids' world.

You inadvertently mentioned the blog in front of the kids, and their aunt. It's not safe to discuss in front of the kids. My son is very inquisitive and perseverant, and I am not good at lying to him.

I am sending a separate email with an apology for Matthew.


When you and your mom came to Santa Barbara and we all went to the beach, I spoke in a mean way to you, and I should apologize. I was riding my wheelchair in your direction when you asked me if I was going to go swimming. This annoyed me, and I came over to you and your mom and asked if you were going swimming. You said you were waiting for the others. In a mean way, I said you shouldn't wait, you should just swim.

I was mean because I thought you were teasing me, and I apologize.

I should have understood that you had a genuine question, and I should have said something like "I can barely walk, and I am very weak and slow. It would be dangerous for me to try to swim. I would probably drown."

I hope that you had fun at the zoo and at the beach.



Wednesday, July 26, 2006


Often when trying to stifle a cough, or avoid choking, I make sudden snorting noises that sound like I am stifling a laugh. It's annoying when someone who's not saying anything remotely worth mockery thinks I am snorting with derision, and responds to my 'laughter.'

person: "After she was tortured..."
brainhell: "Snort!"
person: "Heh heh! Yeah, I know."

Even worse is when they think I think they are Robin Williams, and keep making more jokes.

Far worse is when they know I don't think they are funny, but they think they are Robin Williams, and keep making more jokes.

Tuesday, July 25, 2006

Dr. Quack

I am not sure my pill-swallowing is still improved, and I know my speech has gotten worse. My right biceps is weakening, and I have trouble holding the electric toothbrush in my mouth. Sometimes when I try to lift a forkful of food, the arm just stops, or jitters. My 'walking' is worse, and more dangerous. I am getting worse, and not better. I still have hope for the Lyme treatments, but it is possible that the Lyme kicked off a deadly apoptosis chain reaction that amounts to the same thing as ALS.

Dr. Quack says that's possible. He is taking me off of minocycline and switching my daily ceftriaxone infusion to twice a day (for four contiguous days), with a three day break. I still must flush the line with a saline and a heparin on the days off.

I asked him whether I should take the colloidal silver that some ALS patients take, but he said he worried about possible side effects, and nixed the idea.

He also nixed the Salt Cure for Lyme.

He again pushed the hyperbaric oxygen, something he has mentioned before and which we blithely ignored. We ignore most of what he tells me to do, about which I feel slightly guilty.

He says he thinks the rifampin I started May 31 is the reason I have not been constipated since June 1. Hard to argue that, but I don't agree.

Monday, July 24, 2006


My favorite quote from my father in the mid-1970s: "No one will ever need a computer in their home!" They have three or four.

Sunday, July 23, 2006

Ground war

While we were on our trip, I had access to cable TV. When the kids weren't around, I watched a lot of CNN, while Israel was attacking Lebanon. As you might expect, they endlessly repeated what little they knew while endlessly repeating a list of things that were unknown.

I kept wondering: Why knock out roads and bridges for an air campaign? I know as well as any student of contemporary warfare that you use air to knock out the transportation system that would help the enemy ground forces meet and counter your ground invasion. But I kept thinking it was an air-only campaign. The best I could come up with is that Israel wanted to prevent antiaircraft vehicles from coming south. Then I heard that there were 'limited' ground incursions into Lebanon and then I knew: A full ground invasion was planned.

I am one quarter Lebanese, which explains my dark hair and eyes and Semitic good looks. I love and adore my conception of Jewish culture and history and support the right of Israel to live in peace and security. That's possible even in an historic tangle of culpability on all sides, especially on the part of my Arab brothers, whose food is better and whom you fools who issue the racist claim that nothing good has come out of Moslem culture can thank for algebra, except that you don't use algebra, being ignorant slugs that you are. I recognize that history as it plays out is a meat grinder. I just want my Lebanese and Israeli brothers to stop the killing. Or at least to pause and drink the blood.

Another interesting CNN moment was when they stroked themselves for not revealing exactly where the Hez rockets hit, not wanting to be spotters for one side. And then that same day a CNN reporter did a stand-up, explained exactly where he was in Beirut, and described the direction, estimated distance, and probable location of several loud explosions of Israeli bombs, going into quite a lot of detail about how loud the bombs were, and whether they made a thud and then a boom, or what. No doubt CNN would explain spotting for the Israelis and not the Hez on the grounds that Israel uses precision weapons, and hence does not need spotting. Yeah, right. Hypocrisy.

Monday, July 17, 2006


Hi, we're back.

On July 6 I started using an inhaler that pumps a mist (steroids) into my breathing passages to reduce my 'reactive airways' cough. I'm supposed to use it for at least a week at a time. Still using it, and the cough is still doing me.

Sunday, July 16, 2006

Age Of Spam

If you know me in real life, and I didn't personally invite you to read this blog, please send me an email about reading this blog.

Dear nurse,

It's a lucky thing I spotted this email in my spam folder. It was placed there because it came from an address not in my address book, just like the prior instance I wrote to you about. And the one I wrote your co-worker about.

It is an unfortunate reality of the Age Of Spam that many people filter emails from unknown senders. I myself have seen others doing it for two years now. As such, it is incumbent on anyone sending email from a new address to first announce the new address FROM the old address.

In my job, I did so.

Thanks for sending the supplies. My port is infusing well, with no problems.

We're going out of town for a few days. I'll resume posting on Saturday the 22nd.

Saturday, July 15, 2006


dreadcow is doing more great writing in Fun with hand grenades. In his 7.12.2006 post he urges his civilian friends to never, never join the military.

He also says it is impossible nonsense to say you support the troops but not the war.

I commented, "As for supporting the troops but not the war, I ask you: If you support the firefighters, do you have to support the fire, and the arsonist?"

The comment had not appeared by 11 AM the next day. Hmm...

Friday, July 14, 2006

Think before you speak!

There was a period in my teens where I would be spouting juvenile opinions at the dinner table, and run into some internal contradiction or problem in what I'd said. Even I would see the flaw. My father would bark at me: "Think before you speak!"

This happened quite a few times.

Thursday, July 13, 2006

Sexual behavior in the human male

My copy of Kinsey's "Sexual behavior in the human male" has arrived from the used book seller. Sexuality is a rather silly burden of our evolutionary history, when you look at it rationally. But it is so very close to the core of who we are, that, inescapably, it has taken on all the loving mystical value that we are capable of bestowing on life itself. Or at least it has for me. I'll no doubt find from reading this book that most of the other people with thumbs in their pants are the barbarians they've long shown themselves to be.

Wednesday, July 12, 2006


We went to the ALS clinic, this time with me in the wheelchair. My weight is maintaining at about 132. They measured my FVC at 68 percent, which is down 10 percent from three months ago. But I don't feel that my breathing is any different. My peak cough flow rate was 400 liters per minute, which seemed to impress them. My inhale force was negative 35, which they thought was pretty bad.

My cognitive screen results were still good, 19 out of 20. My speech intelligibility was 74%, I gather from an overheard comment, although they didn't formally measure that. Three months ago it was 96 percent.

I am going to get a bipap machine which pumps a little extra air into your lungs at night. No, it's not a ventilator, you wear it as a mask.

My wonderful wife took good notes.

These results ought to freak me right out. But they don't. Other than being a little more clumsy and weak, I feel that not much has changed. Think "bottoming out."

Tuesday, July 11, 2006


It's true that my mother can have a lot of energy devoted to not being wrong. I have many memories of her lovingly explaining that what I said is what she is saying -- even if they're diametrically opposite. She tries to use words to let you know that your disagreement with her is actually a case of you agreeing.

She lives in an invented reality. But it's not just as simple as her not wanting people to disagree.

What you saw in the 'hazel' eyes incident for daughter was what happens when you contradict her devotion to my father, who had hazel eyes. Since she adores daughter, she wants her to have hazel eyes, because it would reflect on my father. You stepped in the way of that. It's rather like the time your mother told me, not for the first time, that son has her eyes, or your father's. I said, with mock self-importance, that your godmother kept saying that he has my eyes. Your mother snapped at me for that.

In both cases, they'll defend the turf of delusions.

Monday, July 10, 2006

Twisted sock

Kids are always whining about something. Often, when they have no complaint, they'll make up something, just to keep themselves amused. One day when I was still in that stage where I needed help with my socks and shoes, my father put them on me. The sock looked straight and aligned from the ankle up, and even the heel was properly positioned, but down on the upper part of the foot, behind the toes, the fabric was twisted and pulled my skin to one side. I noticed this before he put my shoes on. I may have used some imprecise, childish phrase like "It's not on right." He said the sock was on just fine. And judging by the heel, the toe segment, and the ribbed area over the ankle, it was. But it was stretched and twisted across the fore deck (why is there no name for this part of the foot?), and to my child's mind, it actually hurt. After he put the shoes on, I asked him to fix the sock. He said the sock was on just fine. On the way to the car I asked him if I could fix it. He said we were in a hurry, and the sock was on just fine. After we got where we were going, we did some stuff, and I asked him again if I could fix it. He gave a tolerant little sigh, as if indulging my fantasy, and said I could. I recall seeing the fabric twisted in a spiral across my foot. I untwisted it with relief. After I put the shoe back on I said "There, now it's fixed." He never paid attention to his mistakes, so in his mind, the invented complaint was over.

Sunday, July 09, 2006


Our shower is in a tub. The shower in the addition won't be, but that bathroom isn't ready yet. Because of where our showers bars are, I get out of the tub by grabbing the bar with my right hand, planting the right foot, and lifting the left leg over, using the strength of the left side.

Lately the problem is that left left foot has a lot of trouble clearing the edge of the tub, which is a couple of inches below my knee. Coming out on the other foot just wouldn't make sense or be safe, given the geometry of our bathroom. And I know several people have said to use the shower chair. But we have no flex-line shower head.

And I'm stubborn. The showering will be good in the addition in about a week, where I may use the chair, and can use the flex line nozzle.

Saturday, July 08, 2006

Dear neighbors

A couple of times I have been unable to ride my wheelchair past your driveway because the car was not far enough in to allow it, and the telephone pole and basketball hoop constrain the other side. On our block this is a problem, because the chair cannot negotiate most of the driveways.

I know it is an inconvenience, and I'm sorry for that, but can I ask you to park in such a way as to permit a wheelchair to pass?

Thank you,


In reply, they sent a nice note saying they would make sure not to block the chair.

Friday, July 07, 2006

Just in time

WASHINGTON (Reuters) - Suddenly, the faces and voices of al Qaeda leader Osama bin Laden and his deputy Ayman al-Zawahri are everywhere, in a stream of video and audio messages broadcast to the world.

In the past month alone, six new tapes from the two have reached an international audience. Excerpts of Zawahri's latest message were broadcast on Al Jazeera television on Thursday, a day before the first anniversary of the London bombings.

But U.S. officials and terrorism experts are wary of concluding that the spate of messages means another major attack is imminent.

I'm not wary of predicting that a US election is due in November, and that the pace of bin Laden messages will increase, perhaps with one shortly before election day that appears to endorse Democrats. Audio tapes are more convenient, because then you don't have to show a fat, right-handed Osama.

Thursday, July 06, 2006


At a certain point yesterday, as I lay in fetal position, I thought "The wounded after Civil War battles lay screaming, crying, or moaning. And you're not doing that. So, while your guts are filled with pain, the pain is not as bad as being shot in the guts." I try not to overstate in this blog, so I'll just call it a very intense and prolonged dull abdominal ache. This one lasted from 2:30 PM to 6:30 PM, and was at its worst from 5:00 to 6:00, after the very large and unscheduled poopie. Thus, it follows the pattern of the one on July 2. But because I did not take a vicodin, only Mylanta, the pain was much more profound. Just like the first time, on May 19, I had sweats and chills towards the end, and thought about throwing up. It started to recede at 6:09, and by 6:11 I knew It was fading. Then I sat up and wrote this. But I have a suspect, not gall stones or hand sanitizer. As I lay on the floor around 5:00 PM, I intuited that the Citrucel, heretofore my savior, was the culprit. I've been slamming two doses of it per day. The ache in my gut indicted the Citrucel. I could just tell. I have carefully read the label and it says you could take three doses daily. So the facts contradict my theory. But as usual I'm going with my gut.

Wednesday, July 05, 2006

Bang bang bang

I was born with inward-slanted feet, a severe pigeon-toe effect. They put casts and braces on my lower legs when I was an infant. The braces forced the pliable bones in the legs to turn out. I remember lying on my back in my crib, banging my casts against either side of the crib. It made a loud noise, and I enjoyed it: It was something I could do. My father showed me the crib years later; I was pretty chipped up. But the noise prevented the others from sleeping. They came and asked me to stop. My sisters remained in the room the longest. I understood their words, though I myself did not speak. I stopped banging, because they wanted me to stop. But after they left, and a little while had passed, my infantile mind developed the impression that they could not longer hear the noise and be bothered. So I started again. I did not have much intellectual rigor back then, and I certainly came to no reasoned conclusion about it; But I do remember that I would not have started again if I thought it would bother them. It was simply the case that when their physical presence was removed, the staying power of their wishes faded.

Some of you may doubt that I can remember this. But I have more memories of early life than normal, and the accuracy of these memories has been verified to my satisfaction.

Tuesday, July 04, 2006

Declaration of Independence

Daily Kos often tells it like it is. But when reading the July 2 post by Hunter about right-wing bloggers seeking information on the home addresses of New York Times editors -- or schools of their children -- the phrase "a collection of repulsive little scabs no smarter than their own shoes" jumped out at me. Well, only the "no smarter than their own shoes" part. See, I was a registered member of the Daily Kos blog for a while, but then I switched Firefox and somehow lost the password, which I had not written down. I know, that makes me no smarter than my own shoes.

I looked around for the lost password link, the one we've all seen on numerous websites, the one that emails the password of the user to the address of the user. I found it: Lose Your Password?

I went there, and entered my email address, only then noticing that the page said:

Enter your email into the box, and if there is an account name associated with that email, that username will be mailed to the email address given.

I figured that was a mistake, and pressed the "Mail username" button. I mean, they'd have to be no smarter than their own shoes to create a tool called "Lose your password?" which only mails you your user name.

An email appeared in my inbox:

Someone requested that the username associated with this email be sent

Your username on Daily Kos is brainhell.

Brilliant! I lose my password and they tell me my user name. That's like calling a locksmith after losing your key, and they tell you where you live. It's a system designed by people no smarter than their own shoes.

I went to their feedback form a few days ago and mentioned the problem. No response. Why should there be? DK is read by huge numbers of people. Why should one tiny voice matter?

Kos is a Democrat. He's proud of it. And that's OK. But it reminds me of why I'm darn proud to be registered "Decline to state." The Republicans and their Greens and boorish rebel poseurs are destroying this county -- but with few exceptions, the Democrats are boobs, like whoever designed the lost password page on Daily Kos.

Monday, July 03, 2006

Pre-ordering pays off

The following items have been shipped to you by
Qty Item Price Shipped Subtotal
--------------------------------------------------------------------- items (Sold by, LLC):
1 Civilization 4 DVD-Rom (Mac) $49.99 1 $49.99

Sunday, July 02, 2006

If Daddy gets better

If I do some day regain functionality, for example, improved walking and talking, I don't think we should say to the kids: "Daddy's cured!" or even "Daddy's getting better." I think we should leave it to them to remark on any improvement, to which my response should be to shrug and say "Maybe it comes and goes."

I want them to see me enjoying and appreciating life and health, but being mindful that it's a temporary gift.

Unrelated funny link

At 10:45 AM today I noticed a tummy upset, similar to the ache I felt at the start of the agony of Friday, May 19, 2006. I thought the one at that time was due to my ingesting a very small amount of hand sanitizer, but I also thought it might be a gall stone attack. Constant use of ceftriaxone (the drug I infuse every day) can cause gall stones. The stomach ache caused me to um 'use' the bathroom for a second time at 11 AM, though I already had done so in the morning. Eating a high-fat diet is supposed to increase the risk of gall stones. Last night we had pizza, and this morning I had those little sausages with breakfast. Too soon, I'm sure, but I wonder... Worried that it might be the start of another pain agon, I took a three-year-old leftover vicodin at 11:30 AM. This indicates how worried I was, because I hate drugs. The pain must have been real, and might have become bad, because otherwise the vicodin would have let nothing through. Unless they design the molecule to degrade rapidly with time, in order to discourage after-market recreational use. In any case, the pain was uncomfortable ("Why can't I find a comfortable position?") but never extreme. And by 12:30 it had declined to about 10 percent of its worst, and I was able to sit up and write this, rather than lying on the carpet in the hallway. Now at 1:30 I'd say it's about 5 percent of what it had been at worst. I love my wife.

I could be totally wrong but I feel that my pill swallowing has gotten better. That vicodin I took is big. And just this moment I took a smaller pill by accident. It went down before I even tried! And a visiting friend says my speech is better. I often find that I can still cause my mush mouth to put enough consonant on words to make them intelligible.

Saturday, July 01, 2006


I now admit that I have hope that the Evil One may be at bay. I have been able to make every single day in June, without laxatives. My formula is this:

1 dose of powdered Citrucel in 500 mL warm water
full-day's dose of powdered probiotic in a small amount of water
3 TBS extra light olive oil

1 dose of powdered Citrucel in 500 mL warm water
3 TBS extra light olive oil

I make it my priority to void first thing after getting up. Sometimes it's within minutes, sometimes half an hour. But it's my duty. My doody.

I have a subjective, semi-logarithmic means of estimating output volume. It's a scale from '1' to '5.' Most days I make a '2.' A '4' is much more than twice the volume of a '2.' When I was constipated, I would make a '5,' and then some more later.

The Evil One was killing me, literally. It was the hammer, and the motor neuron disorder was the anvil. Every day that I am beyond the clutches of the Evil One is a blessing. I will continue my vigilant regime.

Given this new hope, I now remove from my blog header the words 太空所有的星球塞進我的屁股. They were copied from a Wikipedia list of curses from the science-fiction show "Firefly." Reader Scott recommended the show, and we watched the DVDs. Fun. They talk in English but curse in Chinese. The translation is "Stuff all the planets in the universe up my butt!" or "All the planets in outer space are stuffed up my butt!"

Now class, repeat after me...

"Taikong suoyou de xingqiu saijin wo de pigu!"
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