Monday, October 31, 2005


I have this dear friend, Jansenist, and he's very driven and has a strong sense of values (meaning, he doesn't know how to relax and have fun). He knows that life is a gift and that we should make the most of it, but he doesn't know that 'wasting time' can be an important part of that. He believes in Making The Most of every moment, of being worthy. He is ... The Example. So, when I posted that I have been spending a lot of time recently playing internet chess and computer games (Civilization III), he sent me this email, which he begins by quoting me:

>"What do I do?... During the day when they're
>out at school, or out on an excursion, I usually
>play chess or play computer games. Or write
> stuff, or read stuff on the internet."

Dude, you sound depressed. You're not just some PS
with an awful disease. You're BRAINHELL!

You know you might not be around all that much longer.
You know that even six months from now you may not be able to do as much as you do now.

So what are you waiting for?

What is the legacy of memories you want to leave your family? What do you want to create and leave for them?

You have important work to do. I don't see how playing
chess or computer games helps you get it done.

Remember the guy who right after the diagnosis made
sure to get footage of himself playing with his baby girl,
so she would have it in years to come?

Where's that guy now?

That guy is here, right now, Jansenist, playing computer games with a big smile on his face. Yes, I have my other projects, and I'll cycle back to them. I already finished the first video for the kids, and burned the DVDs. I'm still working on more stuff, various kinds of projects, as you might imagine. But right now what I enjoy doing is immersing myself in this game and spending most of my spare time on it.

I know you can't understand, but to me it's just as valuable as harassing peaceful Quakers just because they annoyed you, which is something you know a lot about.

As far as chess goes, I am making an effort now to play only when I feel fresh and alert. Prior to this, I used to just play whenever I felt like it. My goal now is to win, and try to bring up my rating.

As far as Civilization III goes, I'm pleased to announce my first 'worthy' victory -- a conquest win in 2030, on a large world with about 10 opponents. I lagged about 100 years behind in science, but had achieved tanks, fighters, and bombers some years before the end. I used the peaceful approach until about 1700, and converted several cities by charm. Then after about 1700 I attacked my neighbors one by one in wanton displays of unprovoked aggression. My people certainly didn't like that, but I nonetheless elimated all other civilizations. The funniest thing is what the foreign advisor said at the end.


Sunday, October 30, 2005


Saturdays my lovely wife takes my daughter for a parent-tot swim, and my son and I play marbles. It's become an unplanned tradition. He's gotten quite good at it, although this most recent time, I skunked him. Then we finished up the chess game that had been hanging on the wall. In the course of this game, each time I built up a massive advantage against him, I switched sides with him so that he could play the stronger. Then I'd whittle away his advantage and switch again. He had a rook and a king and I only had a king. But through his failure to pay attention, I got his rook and the game ended in a draw. Then we played another game. I told him that he is really playing a lot better these days. He's more of a calm, conscious player. He has finally internalized what the game is about. Now he just needs to learn some chops. I checkmated him. I believe in winning when competing with kids. They get to see good tactics, handle defeat, and observe (I hope) a gracious winner. And I think it models for them that you should always give it your best effort. Then we played "Trouble," a Milton Bradley game. When my lovely wife brought his sister home, my son at first insisted that she could not join in. But when I said that I wouldn't play if she couldn't, he agreed to let her have one of the four colors. Then he let her play two colors while he and I each played one. I won the game. When I went into the kitchen to unload and reload the dishwasher, they were playing a new game by themselves. That's a first, at least with that particular game.

Saturday, October 29, 2005

New furniture

We got a media cabinet and a bureau from Ikea, and put them together, per the instructions. The instructions are entirely graphic, without any words. While the drawings did have one or two areas of ambiguity that could be corrected, the drawing shown here was absolutely clear: If you are weak as a kitten due to ALS, do not try to lift big heavy pieces all by yourself. My lovely wife helped, as did my kids, but mostly I put the new things together. Now the TV is hidden, and we get more storage space on top of it (I think of it as "keep-away" space, for when you don't want the kids messing with something), and I can keep most of my clothes in one place. We are getting rid of the bureau that we picked up off the curb for me in 1998. It had a "free" sign on it.

Left grip is 26 pounds (25, 26, 26), right grip is 77 pounds (68, 76, 77), left leg balance is 3.61 seconds, and inhale volume is 4200 mL.

Friday, October 28, 2005

Didn't cry, and didn't jump up high

My daughter has been doing something that my son never did, perhaps because she has an older sibling who reads (quite well!). She sits with a book and flips through each page, each time saying the same thing. It evolves over time. She used to say "Uh-oh, he did something bad. He didn't cry, and he didn't jump up high." She repeated this on every page, book after book, for weeks. Then it became "He did something wrong. He didn't cry, and he didn't jump up high." Then, she insisted, when we asked her, that it was "He did something rah. He didn't cry, and he didn't jump up high." Now it is "He jumped up high. He didn't cry, and he didn't jump up high."

As I say, my son didn't do this. But seeing my daughter do it reminds me that, at her age, I used to do the same thing. I don't remember what words I said, but they were similarly brief. I recall my parents remarking to me at the time, that I was saying the same thing over and over.

I have to say that Wednesday and Thursday I had a bit more energy, as evinced by my doing the laundry both days. Lately I have bypassed that. I'm the type of person who likes to produce work, so I take this as a change in energy level rather than in attitude. And today I feel a little more stable in the legs than I have recently. The metrics don't show a significant increase, so I take this new energy to mean that the antibiotics and the recent cold took a toll which I am only now recovering from.

Left grip is 29 pounds (27, 29, 29), right grip is 74 pounds (74, 74, 74), left leg balance is 6.1 seconds, and inhale volume is TK mL.


Thursday, October 27, 2005

Joni is listening

I lie awake sometimes skipping from song to song on the iPod, hard rock to classical, Joni to Hendrix, analyzing each piece and how I feel about it, skipping ahead as soon as I understand, but sometimes hearing the whole righteous song ... and all the while imagining that Joni Mitchell has a psychic connection to my thoughts, and is fascinated by what I think.

You turn me on, I'm a radio.

Wednesday, October 26, 2005

Load shift

At this point my lovely wife is the one who does all the work, or who by default does it, unless I help out. I remember when I started this blog, that I made an effort to get the (at that time) "baby" girl used to having me put her to bed at night, instead of my lovely wife having to do it all the time. Things have changed. I'm now too clumsy and weak, and often too tired, to be much use, or to be safe. I worry that I might fall over and crush one of the kids. There have been times when I came close. I remember this one time, on all fours in the dark, I started tipping to the left, on my weak arm, and would have smashed my daughter. Instead, I let the left arm go limp and I landed with a thud on the soft carpet rather than crushing her.

Anyway, the point is that I'm not able to do kid work in a way that can be relied on. I can still clear the table and load the dishwasher. I do this while my lovely wife is upstairs doing ALL the kid work: baths, pajamas, temper management, stories, tooth brushing, and getting them in bed. I come up at the very end and kiss them and say goodnight. Then my lovely wife sings to them.

True, on some nights I do contribute, by persuading one of them, usually my son, to do the items on his routine. And while that's helpful when it happens, the default is always my lovely wife.

And when it comes to daytime excursions, she does almost all of that too. I can still drop off or pick up a kid at school, or take one of them on a brief trip to the store, but most activities such as the park require too much extended walking, bending, and moving for me.

And while I always without fail made breakfast every day, there have been many times where I got up and moving too late, and she's cooked it instead. Plus, I am no longer sole king of the laundry. She's been doing most of that, and folding it too.

What do I do? I stay in bed, take long showers, and slowly get dressed. During the day when they're out at school, or out on an excursion, I usually play chess or play computer games. Or write stuff, or read stuff on the internet. Or pick up pills or deal with medical issues. I still do a fair amount of shopping, but usually solo.

My lovely wife and I seem to enjoy each others' company, and have been giggly and chummy as the nights get colder. I love her , and I was saying to a friend the other day that time has proven, more than I could have imagined, what a good match this is.

I want to thank my lovely wife for her kindness, strength, and most of all, sense of humor.

Tuesday, October 25, 2005


Am I crazy, or is this shoe just very sexy? This shoe conjures for me so many delightful aspects of womankind. It belongs to my lovely wife. She has to return it because the clasp broke.


Monday, October 24, 2005

Terrorist in love

The terrorist I set up a blog for, on which I posted the email address I invented, has not received any spam scam emails yet. This makes him sad. The purpose of the blog is to pass fake credit card numbers to the scammers, in the hope they will be arrested when trying to use a fake number under the name of a wanted terrorist.

Then I read an article about the 419 scams coming out of Nigeria, some of which involve trying to get the silly rich American to wire money to a beautiful and willing young woman. The scams can originate from other countries as well, and so I looked in my inbox for love scams, and found one from a supposed damsel in Russia.

My terrorist figures that if he cannot give trouble to credit card scammers, he might as well waste the time of love scammers. I had the terrorist reply to the damsel's email, telling her that the American dream she yearns for is hollow, and to stay in Russia.

If you do a web search on the name of this terrorist, which I included in the email, every single link that comes up declares him a terrorist. I hope he nonetheless gets a reply.

Sunday, October 23, 2005

inferior men

the inferior men
are very powerful

watch them strut

and mind you

it would be in your best interest
to applaud

loudest of all

October 22, 2005

Saturday, October 22, 2005

Four Dreams

I woke up giggling from one dream, and then realized that there had been four:

  1. I was a professor and author in his 50s or 60s (think Jean-Luc Picard), staying in a Berlin apartment of some absent friends. A bookish, indistinct American woman wearing glasses and a sweater, who was a fan and in her late 20s or early 30s, came to see me, to get an autograph in her copy of my latest book. We closed the window, which had been letting in icy gusts of air from the night outside, and turned down the electric heater that had been working overtime to cope. I sensed that the woman dug me in that way. I signed the book "Thank you for your delightful visit, and for our new friendship." Then we were embracing and I slid my hand under her clothes and against the skin of her back. The hand traveled upward and anticipated a bra strap, but the dream ended before I encountered one.

  2. I was at work and got a voice mail from my accountant. I went down the hall to use the cell phone to call him back. As I was walking, I slipped and fell, due to ALS weakness. I wasn't hurt, but a woman made an alarmed, caring comment. I sensed that I was a spectacle and a problem for other people due to my disability. I snuck into a conference room and fumbled with the cell phone, which was very confusing to operate, given that I was, in fact, asleep. Then I became sinister. I was not only different, but to others I was evil. "Droid," my friend from high school, who was grown up now and worked there too, came to the door of the conference room and made warning, disciplinary noises at me, because someone else had the room reserved. I walked out of the room and back down the hall, saying nothing to him, on the policy that I was not evil and did not have to respond to the fears of other people, since they were misunderstanding me. The other people in the office were very afraid, and I sensed that my high school pal was walking behind me with some ax or sledgehammer poised high, to deal me a mortal blow. But I sensed that he wasn't sure if he should. Some other guy we walked past made eye contact with my pal and nodded frightened encouragement to him to kill me.

  3. I was both the two-year-old son and the father in a dream in which the dad was playing with our large white dog, using the cleaned and preserved snout of a black dog. "When ol' scruff, the neighbor dog, died a few years back, we saved his snout." The dad pretended to attack the white dog with the snout, and the white dog loved the game. I also loved it, and being two, I was consumed with giggles and laughter, rolling on my back just like the white dog. The mom was watching it all, amused.

  4. I was an actor in a TV show like Star Trek, and the producers wanted to work my obvious ALS into the script. They wanted to name it for what it was, and have my character go through it. But then I told them that since my kids might watch the show and start asking questions about ALS, we should just make it some kind of weird science fiction affliction, nothing alarming.

    In the episode, our shuttle was spiraling out of control, about to crash into a planet, Three of us were on board, myself, another crew member, and the commander. The commander said that our drive system was coming back on line and that with any luck we would begin to ascend, right after narrowly missing a freeway onramp by "about" 10 feet. "That's too close!" the other crew member and I said. "Gentlemen, WE are ... ad-VEN-turers!" the commander admonished in mock heroic tones. I woke up giggling.


Friday, October 21, 2005


flesh persists

October 20, 2005

Left grip is 26 pounds (21, 26, 24), right grip is 81 pounds (81, 73, 74), left leg balance is 5.67 seconds, and inhale volume is 4200 mL.

Thursday, October 20, 2005


We recently had our first comment battle involving the use of obscenities here at the brainhell blog (Friday, September 09, 2005, "Gesture without motion"). However, we were able to patch things up and restore the sense of diversity and inclusion in a subsequent symposium. The minutes are as follows.

brainhell: The brainhell blog is meant to be a forum that includes all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics...

Femi-Mommy: Ahmen!

brainhell: We even welcome viewpoints both right and wrong, which is where you come in, ShutteredEye. As I believe you proudly supported George W. Bush in both elections he lost.

ShutteredEye: Yes I did. And his spirit moves upon the waters.

brianhell: I've provided name placards for both of you, so that the audience can tell who's speaking. Femmi-Mommy's says "Femi-Mommy," and ShutteredEye, yours says "Mr. Wrong."

ShutteredEye: I hardly think that's fair. I haven't even got any Chinese ancestors.

brainhell: No, It says "Mr. Wrong," not "Mr. Wong."

ShutteredEye: Very well then.

brainhell: Femi-Mommy, would you like to start the panel discussion?

Femi-Mommy: I'd like to start cutting up his lungs to feed to dung beetles, then shove the dung beetles down his throat until he chokes to death.

ShutteredEye: You silly liberal trollop, I merely said that I support the strongest, gentlest, kindest man to ever hold the presidency in his big, loving, holy hands.

Femi-Mommy: The Constitution gives you the right to do that. But your president thinks the Constitution is a problem to be cleared up with laxatives!

ShutteredEye: Moderator, this is ridiculous! I refuse to debate a woman who has tattoos!

Femi-Mommy: Scared?

ShutteredEye: Scared? Why ... why I'll insert your cold, lifeless body into my trash compactor! And then sell the house!

Femi-Mommy: Gasp! You are the man of my dreams. I place my tattooed womanhood before you. Here on this table, take me now.

ShutteredEye: I cannot! I belong to another!

Femi-Mommy: Your wife?

ShutteredEye: No, I am married to the President!

Femi-Mommy: He doesn't support gay marriage.

ShutteredEye: It is a holy union that transcends time and flesh. I will be with him in the afterlife.

Femi-Mommy: He's a custard, though.

ShutteredEye: I tell you, woman: My coffin will have a Diebold voting machine installed in it, and my finger will be wired in the down position, pressing the button to vote for George W. Bush. In eternity.

brainhell: Well, there you have it. Reasonable people can differ, and still get along.

Wednesday, October 19, 2005


When he's done playing Governor of Kalee-phone-yuh, look for Arnold Schwarzenegger to become the Austrian Federal President. Not right away, maybe, but eventually. He wants to be a national leader, and it ain't gonna happen in the USA. As noted by Wikipedia "Arnold supported the campaign of Kurt Waldheim, Former UN chief and a former Austrian politician who was found guilty of war crimes and participating in Nazi activities during World War II." That's not why he can't become the US president, but it's good enough for me.

Tuesday, October 18, 2005

Thai princess

I worked with a guy named Waylin some years ago. He was kind of a sad sack, bit of a hammer head, but real friendly. He started going with this Thai woman who I never saw. He met her while staying at a hotel here in the States, where she was cleaning rooms. They got it on right there. It turned out that she was from a very rich family back in Thailand, but escaped them to clean rooms here in the US, because her rich family just wanted to control her, and she could never be free in that situation. I think it has the ring of fiction, but it sounds true. It might even be literally true.

Left grip is 24 pounds (23, 24, 21), right grip is 79 pounds (72, 75, 79), left leg balance is 3.88 seconds, and inhale volume is 4250 mL.

Monday, October 17, 2005


That Randy Newman song from 1988 has scurried in corners of my head over the years. "It's money that matters," the narrator sings. He talks about friends of his who never adjusted to the great big world. Apparently they eke out livings at public radio and waste time taking care of their children. For years I thought this song was a sincere lament for a lost generation. At the time it was released, I certainly knew my share of very bright, well-educated people who didn't have two swimming pools and a luxury car, and looked as though they never would.

Then, I think just this month, when the song resurfaced again in my mind, I realized that the song is ironic: The guy who pities his friends who don't realize the importance of money is himself to be pitied.

Money is important, and so is youth. But if you've never been old, you've never been young.

Left grip is 29 pounds (25, 23, 29), right grip is 78 pounds (76, 78, 69), left leg balance is 3.84 seconds, and inhale volume is TK mL.

Sunday, October 16, 2005

Human verification

I really like the squiggly-letter challenge that Blogger has made available in the comments section, but with regret I must say that I can see a way in which people who operate spam bots can defeat the system. I think perhaps my sometime commenter 'ALife' can see it too. The good news is that it would still require ingenuity and human labor. The most elegant thing is that you could use the same type of system to defeat the Blogger system. Ahem, enough said. If you have any comments on this post, please email them rather than posting them. I don't want to help the terrorists.


Saturday, October 15, 2005


Someone on the ALS Yahoo group sent an article about a hypothesis that viruses cause ALS.

In my opinion, the hypothesis is not supported by epidemiological evidence. There is no indication that people catch ALS from each other. The incidence is sporadic, with no worthwhile clustering. For a virus to cause ALS, this would have to be a virus that is so common, so highly transmissible, from people or the environment, that virtually everyone has it present in their bodies. Then the question is still the same: Why do some people get sporadic (non-inherited) ALS, and not others? Why do so many people NOT get ALS? In hypothesizing that a virus causes ALS, we are hypothesizing that something causes ALS, but that we don't know what that something is.

Friday, October 14, 2005

All praise Mr. XXXX

As readers know from my battles with banks, doctors, stores, and random strangers, I believe in Giving Feedback, and that's the reason for this letter:

9999 MYE WAY

October 5, 2005

When I applied this year for Social Security disability benefits for my medical condition (ALS, also known as Lou Gehrig's disease), I expected to encounter hostile, bumbling bureaucrats along the lines of our societal stereotype of government employees. While some of the people I have dealt with at the SSA's toll free number have fit that stereotype, I was pleased that the very first person I spoke to by phone at the local office was helpful, diligent, and able. I don't know this woman's name.

She referred me to Mr. XXXX, and this letter is to praise and thank him for his assistance. Mr. XXXX has been helpful, concerned, capable, and most of all, committed to following through with problems and resolving them, even when apparently mysterious or complex. He is an excellent professional who overcomes obstacles.

A case in point is that recently someone else in the SSA apparently made a data entry error which resulted in the SSA sending a direct deposit for one of my dependents to the wrong account. We did not know this at the time the payment failed to show up, however, and Mr. XXXX persisted in using all the information resources at his disposal to examine beyond the apparent status that everything was functioning normally. He discerned the error and took steps to correct it.

In July, when there was a problem with my direct deposit, Mr. XXXX noticed it first and contacted me, before I'd even noticed it. Whatever the problem was, he resolved it.

Mr. XXXX is a truly excellent professional and I am glad you have him on staff. I hope you will reward him.

Thursday, October 13, 2005

New metric

I took the laat of the Flagyl yesterday. I'll do a liver panel soon. I have also ordered a new test kit from the quack lab, to see if there's any change.

I have decided to track my blitz chess rating over time. Data is gathered once a week, prompted by a calendar reminder. Above is what I have so far.

A lower score means you're getting worse, losing more, and more easily. I feel pretty sharp, but then again, my chess score has been declining. I was reading some stuff about Lyme disease making people confused and impairing their ability to reason. This chess thing occurred to me. Maybe I am losing brain cells, but maybe I just care less about chess. I have now started to try to improve my score. It's still going down.

Wednesday, October 12, 2005

Comment to Joey

There's a good young man over there in Iraq. He blogs. I recently wrote this comment there:

I have been curious about how you relate to being in the military when (I think) you are a Libertarian. Must be quite a dynamic contrast to be in a large, coercive, government organization utilizing force in the stated pursuit of freedom. I'm sure you have worked it all out, but it must be staggering, sometimes, to find yourself there. I admire your intellectual and emotional courage in being able to integrate all this.

The question is whether these savage tactics will get the bad guys the control over Iraq that they seek. I respect your dedication to peace and security, and I'm sure many of the Iraqis you talk to appreciate it as well. Good job. Unfortunately, I think that history and current events (and logic) show us that the balance is tipped in favor of the bad guys, and that the US pouring more people and effort into Iraq will not correct that momentum. If anything, it may add to it.

It's hard to say this to a soldier in harm's way. However, since I am just one person in a nation of 300 million, in a very complex and inertial world, I realize that it would be pointless for me to say "pull out" or "stay the course." If we stay there'll be suffering, and if we leave there'll be suffering. History will run it's course, but while it does, I am glad a good, conscientious person like you is representing my country in that maelstrom.

I feel that my cold may have gone away last night. However, I still have the cough that always seems to creep up on me whenever I get sick, even with something that does not involve coughing. My chest and stomach muscles hurt from the coughing, which I would have to describe as mild. Could be ALS muscle fatigue. Thankfully this is the last day of my antibiotics. They just make my whole body feel stressed. No, not a Herx reaction, as far as I can tell. But I wonder, Scott and Robert, if that happens in 100 percent of cases of Lyme treated with antibiotic.

Tuesday, October 11, 2005

Chocolate cure

Sometimes when we're in the car, my son will posit his theory about my limp (which is how he refers to it, despite our explaining that the same problem impairs my tongue). He thinks it might be related to the fact that I had inward-pointing feet as a baby which were straightened by casts and braces. I've explained that they fixed the feet but not so much the knees (which still bend in a tad when I walk). He thinks that if they had straightened the knees better, I wouldn't limp now. He also wonders if my not eating chocolate has something to do with it. This is how the kids label my lactose intolerance. He said that if my limp goes away, I might also find myself able to eat chocolate. I was poised for your blog-reading amusement for him to say that maybe if I tried eating chocolate more, my limp might go away. But alas, he didn't.

A few days later, however, there was more evidence that he's integrating and accepting my disability, rather than being frightened of it. My lovely wife mentioned that I was eating a dinner more slowly than everyone. I think she meant because I was congested. And he said, "Yeah, because of his tongue." We'd previously talked about the fact that I talk more slowly due to the same nerve signal propagation problem that impairs my legs. This was not what she was referring to, but it was good that he completed the thought on his on, to explain my slow eating that night. I normally eat slowly anyway, did so even before ALS, and it has slowed me down.

The main thing is not to have a big secret that the kids have to tiptoe around.

This is where my readers were coming from yesterday. My first hit ever from New Guinea is shown:

Left grip is 29 pounds (26, 22, 26), right grip is 79 pounds (79, 65, 75), left leg balance is 7.56 seconds, and inhale volume is 4240 mL.

Monday, October 10, 2005


I've looked at Buddhism, because, after all, it is a much better religion, from my perspective, than the cranky Abrahamic faiths. No offense intended to Judaism, the best of the Abrahamic faiths.

Yet even Buddhism, despite how cool it is, contains what I consider an inner flaw: The rejection of life, the attempt to escape from suffering into nothingness. The concept of suffering and most all of the Buddhist analysis sits very well with me, but right down at the core is the doctrine that life is not worth living.

I know nothing of Hinduism, so maybe I should learn about that. But I am not shopping for a religion. If I had to describe myself (and I don't -- so I'll duck and dodge if anyone tries to pin me down), I guess I'm some kind of desire-positive Buddhist. Attachment is the root of all suffering, true, but it's also the salve to all suffering.

Anyway, my pedantic lecturing is getting a bit far afield. This is the story of what I found in the Dalai Lama's book "The path to tranquility," which contains bits of wisdom for all the days of the year.

I am aware that in my October 7 post, I said some things about the president which were a bit , uh ... energized.

So as I waited for my son to dry himself off after his bath last night, I went in the bedroom and idly noticed the Dalai Lama's book, which belongs to my lovely wife.

I flipped to October 7, thinking that the Dalai Lama would have some advice chiding me about my anger. Far from it, he was right on message with me. The entry was so apt it was spooky:

The ignorance, arrogance, and obstinacy of certain individuals, whether their intentions were good or evil, have been the root of all the tragedies of history. The mere names of these ruthless tyrants inspire fear and loathing. So the extent to which people like us naturally depends on how much, or how little, we think of others' good.

Demonstrating this, we see that people don't like Bush much at all after he didn't think much of sending them help after Hurricane Katrina.

Doubtful that I could be so totally vindicated by such a cool holy man, I decided to flip to my birthday. Ah, here was the warning about anger.

Left grip is 28 pounds (25, 28, 25), right grip is 78 pounds (76, 78, 73), left leg balance is 4.71 seconds, and inhale volume is 4300 mL.

Sunday, October 09, 2005

Back walk

I lay on the carpet while my barefoot daughter,
two years old and explaining,
walked up and down my back, stepping on my head
in time to the piano from downstairs
played by my kind, and loving, kindergarten boy

October 7, 2005

Left grip is 27 pounds (25, 26, 27), right grip is 81 pounds (74, 79, 81), left leg balance is 5.33 seconds, and inhale volume is 4250 mL.


Saturday, October 08, 2005

Your units have overcome their stupidity

Since I was defeated by The Sims, I have been playing Civilization III. I have not mastered it yet, but I am getting better. I had a dream about it. Background: In the game there are messages, such as the one in the image above, which says that the unit has already moved. Also, in the game, your civilization can build "Wonders" which give your civilization advantages. These are usually positive to you rather than negative to others: They're not "spells." But in the dream there was a Wonder which can make opponent units on an entire continent "stupid" for a while. My units on the continent of Australia had been zapped by the Stupidity Wonder. I could not give them orders, and a whole crowd of them were getting whacked by a lone opponent archer. Then, in the dream, there was a message. It was like the one shown in the image above, white letters on black, and it said "Your units have overcome their stupidity!" Right after that I ordered one of my units to kill the archer, and it did. Let this be an omen in my war against my medical disorder.

Thought for today: "If the Rolling Stones did not exist, it would be necessary for your daughter to invent them"

11:20 AM: OK now I'm actually worried. I haven't taken anything, but I feel so good that I wonder if this Flagyl is interacting with something (creatine? Namenda? LDN? Rolling Stones?) and causing a reaction. I feel intellectually present and capable (but who doesn't, when they're high?), and I did just win a chess game against a higher-rated player, but there is something weird about this pervasive pleasure. I connect it with the cold I have, since this feeling did not arrive until it did. On the other hand, though, the cold makes my daughter feel bad. This is a lot like those dreamy undergraduate days when I was young (I didn't drink or do substances then, either). I had forgotten this feeling of ease. You younger readers should know that the aches and pains of age don't manifest as aches and pains, it's more the gradual ebb tide of the opiates of youth. You don't notice it creeping over you. Then one day in your forties you feel GOOD, and you remember: "Oh, this is what it was like, being young!" Weird.

Friday, October 07, 2005

Job review

I think my mother was right when she said that people who use profanity are displaying a lack of imagination. There's no special event that prompted the email below, which I sent to, I just wanted to go on record:

October 7, 2005

Dear Mr. President,

Due to the large volume of email received, the White House cannot respond to every message. And I knew that, when I emailed encouragement to President Clinton years ago. I thought it was nice that the White House finally had gotten any email system at all.

Computer systems often have rather determined archiving tendencies. As Lt. Col. Oliver North found out, sometimes things that we try to delete do not get deleted at all. They get archived.

And so, on the off-chance that the White House system will archive this message, and some future historian might view it, I offer this, your job review.

You're not only a terribly twisted wreck of thoughts, sick emotions, failures, pride, and misconceptions, but sadistic circumstances made you President of the United States -- twice!! -- despite that you've never won any election except for Governor of Texas. Let it be noted that I consider you to be exactly the right man at exactly the right moment in history to take charge of this country and deal it the most damaging blows reasonably possible. You are a blight, a fool, a boy in a grown-up's job, and it's a pity that Satan ever released you from the bottle to spread your devastation across the causes of liberty and civilization.

I love America and the American cause, not least the Constitution. For close to two years, I've had a fatal, presently incurable medical disorder which kills most people in two to five years. Nonetheless, I assure you that I will live long enough to see you leave the White House in a helicopter disposing of diseased ideological effluent.

God speed you on your journey!

Wow. The other day I took Tylenol and felt good, pain-free, young. That was drugs. And like any good abuser, I 'chipped' several times during the day to maintain the feeling. And I paid the price with an awful night of sleep. But today, I have not taken any drugs (other than the usual bevy) -- I mean, not any feel-good drugs. Nonetheless, because I think my cold, and its sinus congestion, is retreating, I feel completely opiated (not that I would know what that feels like). I feel SO GOOD that it's hard to express. So much for the Herx reaction!

Thursday, October 06, 2005


Mike Shirely, is a CANUCK (Canadian Antidisestablishmentarian Not Understanding Cat Killers) with ALS. He has designed some of those trendy rubber bracelets like the "Live Strong" ones. But these are for ALS. You can order them from his site, linked above, for a $3 donation. I don't wear bracelets ("What's that for, Daddy?") but I like Mike, and though I often express rude doubts about glyconutrients, I want to do something nice for him. Hence this link, so that he can get beer money from you suckas.

My own unpacking of the ALS acronym is this: "Agonizing Life Shortener."

Still no Herx reaction, but I do have my first sniffles-and-sore throat of the year, brought to me by the usual pathway, my dear, wonderful small children. My son seems largely over his cold, but my daughter is still suffering. I started coming down with it yesterday. I don't think it will be miserable.

Wednesday, October 05, 2005

Strict constructionists

You'll encounter people from time to time who like to claim that the Constitution should be strictly interpreted. These people decry the supposed role of activist judges in inventing new rights, and new powers of government. The strict constructionists say there should be no need to read things into the Constitution that the framers didn't put there.

Take a look at the Constitution and you'll see that it contains huge generalizations that imply a clear intent that we interpret. Examples:

"Excessive bail shall not be required, nor excessive fines imposed, nor cruel and unusual punishments inflicted."

How do you define "excessive," and "cruel and unusual" except in terms of an evolving standard?

"In all criminal prosecutions, the accused shall enjoy the right to a speedy and public trial..."

Care to strictly construct "speedy," anyone?

"No person shall be held to answer for a capital, or otherwise infamous crime [...] without due process of law; nor shall private property be taken for public use, without just compensation."

By leaving "due process" and "just compensation" undefined, the framers rely on us to interpret.

"The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated..."

Go ahead and define "unreasonable" without using your powers of reason.

Oh, and by the way, in terms of 'making up' new rights, the Constitution specifically grants rights which it does not mention:

Amendment IX (1791)

The enumeration in the Constitution, of certain rights, shall not be construed to deny or disparage others retained by the people.

Next time you hear a strict constructionist, I grant you the right to laugh.

...So far no Herxheimier reaction, and the elbows are almost back to normal. I can report, however, a dramatic improvement in the dishwasher. Since the brain transplant, it has come up to what I would consider normal performance levels. Oh let it be my role model! And my Civilization III play has also improved. Right now I am playing a normal game (on the easiest level) and appear to be dominating everyone else. There are still some problems with my internal grace, but I overcome these by unprovoked aggression against my neighbors.

Swallowing pills has become incredibly tricky and difficult over the past couple of months. There are muscle twitches on my abdomen from time to time now.

Both my kids have their first colds of the season. The boy is well enough for indergarten, but the girl has to stay home from preschool. The kids in a family we are close (exposed to) to both have sinus infections and are on antibiotics.

I tell you, this morning I woke up with a small headache, plus antibiotic stress, plus there was lots of screaming from cranky ones, so I took two Excedrin -- and boy do I feel good. I'm floatiing on a cloud of no pain. I know I am on drugs, but I'll take it!

Left grip is 29 pounds (20, 27, 29), right grip is 81 pounds (78, 81, 77), left leg balance is 4.19 seconds, and inhale volume is TK mL.

Tuesday, October 04, 2005

Book slap

Scott informs me that one does not usually experience the Herxheimer reaction until about 48 hours after commencing antibiotic. But my elbow aches are undeniable, and not something ALS has brought me before. As I recall from when I was experimenting with penicillin, merely taking high doses of antibiotic makes me feel bad. I feel kind of wired, and as though every cell in my body has been attacked in a small way. No, this isn't the Herx yet, just ... blech!

I was a smart kid, and a skinny, short, wimpy dweeb. My friends and I in junior high school used to suffer the ignominy of having our books and binders slapped out of our grips from behind. This was in the days before backpacks, when you carried your plastic ring binder and books pressed against your leg.

The tough kids, the normals, who hated class, books, and bookworms, would wait till we passed, and then surprise us by slapping our books so hard that we would drop them.

We hardly discussed it among ourselves, other than perhaps two sentences of wry comment. And we appear to have all hit on the same response tactic as if of one mind.

When the books were spilled, we would pick them up in one quick scoop without interrupting our conversation, and walk on, as if nothing had happened. I think the most I ever said was "Oh, my books fell."

The idea was to teach the bullies that, if we were worms, then they were worms to the worms.

There was this other gang of guys that would come around and grab the lunch money out of kids' pockets. When they came for us one day, I was so stubborn and selfish that I twisted up my pocket around the boy's hand, and refused to let him have my money. He could have beaten me up I suppose. But that was another thing altogether, and I would have responded with lots of ducking, running, yelling, and kicking.

My friends must have told our teachers or their parents, because at dinner that night my mother treated me like a hero. She was so full of praise and awe. I thought she was full of it. There was nothing heroic in my contempt for the bullies. They annoyed me, just like my mom's praise annoyed me. I was an irritable kid.

Perhaps there is some karmic logic that governed that, not long after posting this account of the thugs of my youth, I found a graffito tag on the street side of our plastic yard waste bin. We'd left it out in the front yard for several days because we'd anticipated using it there. So on our block, we may be the only ones with a bin out. I've lived in graffiti-and-drugs neighborhoods before, but this is not a graffiti-and-drugs neighborhood.

I took a picture of the tag. It was done in one of those pens that pipsqueaks carry in their pockets for this purpose. I went at it with a green scrubbie, and it took a lot of scrubbing, but it would come off. I decided to leave the bin in the same place at the curb, which I suppose is pretty much along the lines of our reaction to the book slappers. The message to the thug is: You don't matter enough to get a reaction from me.

I imagined their glee at being able to tag it again once I'd cleaned it all off. So after I'd scrubbed about 80 percent of it off, I decided to leave some of the lines and swirls. The idea is that if they want to tag it again, they confront a polluted canvas.

What do you think? And do you know of any cleaners that are good at getting these pen marks off of plastic?

P.S. -- Thanks to all of you who sent me such nice, supportive emails yesterday!

I had my flu shot today, too.

Monday, October 03, 2005


OK, I just took the three Flagyl with a little bit of yogurt and a full glass of water. They'e bitter and they crumble quickly in water, which I suppose is good. I'm chasing them immediately ith three probiotics. I've been taking three probiotics morning and night since Saturday night.

I've decided, for the heck of it, to stop the riluzole during these 10 days, since it's just more stress on the liver.

Left grip is 26 pounds (24, 25, 26), right grip is 80 pounds (74, 80, 74), left leg balance is 3.64 seconds, and inhale volume is 4300 mL.

3 PM: I have taken the second dose for today. So far, the only reaction I think I notice is a soreness in the lower biceps near my elbows. In the past, with me, this has been a harbinger of fever or flu.

Sunday, October 02, 2005


I plan to start taking the Flagyl doses Monday, at 7 AM, 3 PM and 11 PM. It might make me feel awful (which would be good sign), so I'll start it that day, when both the kids will be in school.

Two Hands has an important message about breast cancer in today's post. The main thing seems to be awareness and diligence.

Left grip is 26 pounds (24, 26, 24), right grip is 76 pounds (76, 75, 74), left leg balance is 3.66 seconds, and inhale volume is 4250 mL.


Saturday, October 01, 2005

Angry disabled guy

The other day I went to pick up my son at kindergarten. I wasn't late, but had not a minute to spare. I drove to the convenient disabled parking space and found it occupied by a parked car. The car didn't have a disabled plate or placard, and it appeared that someone had parked "just for a second" while picking up their kid. I double-parked next to it (thus blocking it) and wondered if I could persuade the cop to give my ticket for double parking to the other car. Not likely, I thought, as I got out.

The other driver came over to the parked car. "Are you disabled?" I said, in my slurred voice, after a few limping steps, "Because these spaces are for us."

Us, I thought, I've never used "us" to include myself in the disabled community. That's a first...

"No," she said, "and I'm very sorry." Because we both started fiddling with our car doors, that was the end of the eye contact. She went to her vehicle and appeared ready to move it. I opened my door, but then that phrase "I'm very sorry" set off my alarms. Some people think "sorry" makes anything all right, so while she opened her door and I was looking down the street, I challenged sarcastically: "But you'll do it next time, when you need to, right?"

"Yes I will," came her answer.

And I suddenly I was angry. How snide, I thought. "Go to Hell!" I bellowed in my slurry voice.

I never thought I'd be the angry disabled guy yelling about parking. After all, there is no guarantee that the space will be available. There could have been another disabled person in it, or a tree fallen across it, or bears mating in it or something. In that case I should just find other parking. It was her attitude that bugged me.

She pulled out and did the double parking while I pulled in. Kids began to appear and she loaded hers and drove off. As I picked up my boy, I realized that she had probably misheard or misunderstood me.

When I said, "But you'll do it next time when you need to, right?" she probably thought I said something like "But you'll park elsewhere next time, right?" She answered "Yes I will" penitently.

It's still possible that she was being snide and nasty, but I now don't think she was. Basically, I yelled "Go to Hell!" at a woman who didn't deserve it.

Left grip is 30 pounds (26, 29, 30), right grip is 83 pounds (83, 80, 76), left leg balance is 3.76 seconds, and inhale volume is 4490 mL.
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