Wednesday, May 31, 2006


In Kindergarten my vision was tested at 40/20, twice as good as normal. I thought there was something wrong with me, that I was sub-par. But my parents tried to reassure me.

By about 1998 it has worsened to 20/20, normal.

Now I often notice that the words in books are blurry. I think this has happened in the last few months, since I started daily ceftriaxone infusions. There may have been some blurry vision before starting the drug, but that was probably due to extreme fatigue.

I'm not sure whether blurry vision is a feature of ALS, or Lyme, or ceftriaxone.

The frustrating thing is how quickly most people, including doctors, will say that this is just a normal consequence of aging. My subjective impression that this is not normal will be dismissed a pride or denial.

I also note that the inner surfaces of the fingers on my left hand looked bleached, or ischemic, though obviously they're neither. It's mostly on the index finger. I have noticed the same symptom once or twice on the right hand, but only mildly. Antibiotic?

Tuesday, May 30, 2006


An man came to see me May 24, a former neighbor in his sixties who taught me a lot about working on houses. He helped with this house.

"Thanks for teaching me how to work on a house," I said.

"You were good," he said.

I cried after he left, not lability stuff, but genuine. I miss being that healthy and strong that I could rip up a bunch of plywood and build a set of steps in a weekend.

Later that day my son 'helped' our handyman 'carry' lumber. That should be me on the other end of the 2 by 4. That should be me! That should be me! That should be me!

Monday, May 29, 2006

And when must she wear the hijab?

From the May 16 Washington post:

New federal guidelines ask all females capable of conceiving a baby to treat themselves -- and to be treated by the health care system -- as pre-pregnant, regardless of whether they plan to get pregnant anytime soon.

Among other things, this means all women between first menstrual period and menopause should take folic acid supplements, refrain from smoking, maintain a healthy weight and keep chronic conditions such as asthma and diabetes under control.

While most of these recommendations are well known to women who are pregnant or seeking to get pregnant, experts say it's important that women follow this advice throughout their reproductive lives, because about half of pregnancies are unplanned and so much damage can be done to a fetus between conception and the time the pregnancy is confirmed.

The recommendations aim to "increase public awareness of the importance of preconception health" and emphasize the "importance of managing risk factors prior to pregnancy," said Samuel Posner, co-author of the guidelines and associate director for science in the division of reproductive health at the Centers for Disease Control and Prevention (CDC), which issued the report.

Bush's people are not just urging women to make healthy choices, they're telling health providers to do so, because women are vessels. The American Taliban are here.

Hat tip: Savage Love, a link wherein he looks even more like me than ever.

Sunday, May 28, 2006

Almost me

I look a lot like Dan Savage, except for the chin cleft and muscularity. He looks a lot like me, only I'm one year older, and prettier.

To which my friend Jansenist says "Yeah, but you look more like Keith Richards."

I don't see it, not least because I'm not an old boot, I don't wear jewelry, and I DON'T APPROVE OF SMOKING. Though I do dabble in IV drugs...

Apparently I'm not the only wacko nutcase with questions about 9/11.

Saturday, May 27, 2006

The facts of life

Our son was asking some detailed questions about how the cell from the daddy gets to the cell from the mommy, so on May 24 my courageous wife told him, on the way to school. She was very brief and clinical, not adding a lot of detail. This is the best way. Let them ask questions. You give brief, factual answers. She did good.

Friday, May 26, 2006

Don't run in the house!

I think that when we moved to the new house when I was three, they had some new rules for me. Don't run in the house was one of them. I didn't like it that there were new rules. I recall slipping up, and them calling out "Don't run in the house!"

My kids run in the house all the time. We like it.

Play with garbage.

Thursday, May 25, 2006


Another wasp or hornet flew in the same window, so there must be a nest out there. We had the handyman build a screen for that window. Problem solved.

For some gift-giving day when I was a kid, I got my father this little figurine of a cartoonish, frustrated character with furrowed brows and clenched fists saying "What a beautiful day! Now watch some bastard come along and louse it up!!"

My mother gently tried to dissuade me, but I insisted. I thought it was ultra-funny, and perfect for him. He had a very sour, angry, nearly paranoid outlook on life.

I think that a little worst-case analysis is usually a wise thing, but he let his appetite for disappointment rule him. Some of the things he said were just plain crazy.

So the day came, and he opened his present. My mother must have already told him what it was. He said "That's funny, but I already have one."

"You do?"

"Yeah, the guys at work gave it to me."

At another time I learned that they also had a nickname for him that riffed on his dourness. This tells me that I am not alone in having perceived what he was.

My father was immensely egotistical and self-pitying. He declared, for example, that Anna Karenina was the closest thing he'd found to a description of himself in literature. "I am Anna," he once said.

To his credit, though, he displayed the figurine for years.

Wednesday, May 24, 2006

Flight 77

Flight 77 struck the Pentagon on 9/11.

Here we have the Pentagon security-camera parking lot video that was recently released after lawsuit under FOIA. Videos by security cameras of two nearby businesses and a highway department have been impounded by the government and never released.

Assume flight 77 was flying at 500 mph (slower speeds would make the plane more easily captured in the video). That's 8.3 miles per minute, or .138 miles per second. At a frame rate of 24 frames per second, the speed of feature films, that's 0.005787037037 miles, or 30.5 feet, per frame. A Boeing 767 is 155 feet long. At 24 frames per second, it would have shown in five frames, if the trajectory shown in the video spanned 51.5 yards or more, which it appears to.

In the video, you can see the explosion across several frames, about five. That explosion happened fast. So the frame rate that captured it seems very high. You can also see cars driving both before and after the explosion, and some people moving around. Given the jerky motion of the people, and despite the detailed capture of the explosion, I'm willing to guess that maybe the frame rate is as bad as 12 frames per second. Even if it were as bad as 10 frames per second, the airplane would appear in at least two frames.

Some people claim they see a plane in the video, even a tail fin. I don't. I just see a smoke trail. If the plane does appear in two frames, one of the frames might be the one which many people say shows the plane, and the other might be the the very first frame of explosion, if the explosion enveloped the tail of the plane.

I have an otherwise very intelligent and reasoned friend who has descended to nearly the level of hucksterism in response to my saying that I now have questions about the official account of 9/11. He insists on putting words in my mouth which I did not utter, and forcing me to make binary choices. He says that I am saying there is some kind of government cover-up. I keep saying that I merely have questions, which does not imply a belief in any conspiracy theory.

I think he has the Thar Be Dragons response to the supposed implications of questions about 9/11: If we follow these questions to their conclusions, then the possibilities are too terrible to contemplate, so let's not sail off the edge -- Let's stick to known waters, the official explanation.

This otherwise very astute friend has been johnny-on-the-spot with government data, and popular media accounts which strain credulity and employ ridicule when dismissing questions about 9/11.

I asked my friend what the frame rate if the camera is, and he said he'd read in some government report that it was one frame per second. I replied, "Wow! How did it capture the gradual development of the fireball at 1 fps?" That's when he wrote that he wanted no part of any further discussions on the issue.

What does this imply? It implies to me that the 757 was not captured on video, though it should have been. What does that imply? Not my job. I just raise the question.

Tuesday, May 23, 2006

Return of the Evil One

There's a pattern to my constipation, and until this last episode I was able to say that things were improving in the post-Namenda world. (Namenda has a side effect of constipation). The pattern is that after the large and uncomfortable blowout, there will be two to four days of repeated success. Then there will be a buildup of two or three days, and some discomfort. But since halting the Namenda, each time, the crisis was less severe, until it almost became easy. I started to think the Evil One might be on his way out of my life.

I normally went every two days, even before my diagnosis. It has to do, I think, with spending 10 years constipated as a child. The pressure was relieved by uncontrollable squirts into my pants. It turned out I was unable to digest milk, and once we learned that, the problem was solved. I call that parental incompetence. Rest assured though, my mother has written a script that explains it all. Under the script, she knew it was milk, but at schools, and at friends' houses, it would be "slipped" to me. I never drank it at school and I rarely went to friends' houses. I did eat lots of milk chocolate, and drink lots of milk at home.

Back to the present day... Things were improving with each cycle. There was less discomfort, and production of the hesitant mass was growing easier. This had been going on since March 16.

Some of you have suggested that maybe I don't need to take Citrucel every day, noting that when not taken properly, it can constipate. I take it with half a liter of water. But I allowed various quotidian distractions to cause me to skip the Citrucel for several days before this most recent attack, in part as an experiment with your advice. Bad idea. Very bad. I am not sure, but I think that the stoppages in the current pattern can be ascribed to skipping Citrucel, or mineral oil.

I hope to promise that I will now be inflexible about this: Not a day without both!

Cough misery
Imagine being feebed out with a neuromuscular disorder like mine, barely able to teeter from place to place, using the walls to steady yourself, barely able to have your words understood, worried about losing weight -- and then you get this persistent cough. This cough is due to your 'reactive airways' and happens pretty much all the time, but especially if you put a bite of food in your mouth, or try to say anything. This cough wracks your already spastic body, tensing the muscles and making your teetering transits from wall to wall even more perilous. A cough that can make you fall down and break your crown.

I caught a mild cold with sneeze from my daughter, and got over it quickly. But the predictable cough came next. My folk prevention method has been to drink warm or hot water only -- never cold. Plus fanatic hand sanitization. This approach had worked since November of 2005. But shortly before I caught the cold from my daughter, I had begun drinking lots of tepid water from a jug I kept on my desk, in the interest of bowel regularity. I think that made me vulnerable.

Mercifully, the cough lessened just before the latest attack of the Evil One. I hope and believe that I am now coming out of it, at last.

Monday, May 22, 2006

Now emit your derisive laughter

Misery of constipation today. Last time I went was Tuesday.

Geek Girl recently supplied a bunch of links explaining the Twin Towers collapses on 9/11. This post looks at just one link she supplied, in which Scientific American reports on an MIT group's opinion.
The main culprits in bringing the famously lofty buildings down, they concluded, were the two intensely hot infernos that erupted when tens of thousands of gallons of aviation fuel spilled from the doomed airliners. Once high temperatures weakened the towers' supporting steel structures, it was only a matter of time until the mass of the stories above initiated a rapid-sequence "pancaking" phenomena in which floor after floor was instantly crushed and then sent into near free fall to the ground below.

According to the report of he 9/11 Commission, "At 9:58:59, the South Tower collapsed in ten seconds." I've seen the video, and while it may be a tad longer than 10 seconds, it's less than 11.

The towers were 1350 and 1360 feet tall. So let's start by using our trusty free-fall equation to see how long it should take an object to free-fall from the towers' former height.

Distance = 1/2 x Gravity x Time(squared)


Time(squared) = (2 x Distance) / Gravity

Time(squared) = 2710 / 32 = 84.7

Time = 9.2

So our equation tells us that it will take 9.2 seconds to free-fall to the ground from the towers' former height.

Using our simpler equation, V = GT, we can see that at 9.2 seconds, in order to reach the ground in 9.2 seconds, the free-falling object's velocity must be about 295 ft/sec, which is just over 200 mph.

But that can only occur in a vacuum.

Since the WTC was at sea level, in Earth's atmosphere, you might be able to imagine how much air resistance that represents. (Think about putting your arm out the window of a car moving half that fast!) Most free-falling objects would reach their terminal velocity long before they reached 200 mph. For example, the commonly-accepted terminal velocity of a free-falling human is around 120 mph. The terminal velocity of a free-falling cat is around 60 mph. (source)

Therefore, air resistance alone will make it take longer than 10 seconds for gravity to pull an object to the ground from the towers' former height.

I didn't write the above italic section, some scientists did.

What this means is that the buildings appear to fall with almost nothing in their way to slow them down. Unless you buy the explanation that the towers had begun collapsing internally before the visual 10-second event.

We have video of an airliner hitting. The huge fireball of fuel explodes mostly OUTSIDE the building. Nonetheless, let's assume that intense fires attacked the four main central supports. Aviation fuel burns at about 1200 degrees F I think and steel melts at 2700 degrees F I think (Feel free to check me on that). To my knowledge no steel-frame building has ever collapsed from fire, even fires lasting many hours. We might say that the twins towers and WTC 7 were of special construction. Recall how long it took between the impacts of the planes and the tower collapses. 110 minutes and 47 minutes. The second tower struck collapsed first, which is unexpected if fire weakened the supports and caused the collapses. The idea that the supports didn't melt, but just weakened, has a high hurdle.

The scientists I quoted above put it this way in a press release hampered by lots of useless political rhetoric:

Since the melting point of steel is about 2,700°F, the temperature of jet fuel fires does not exceed 1,800°F under optimal conditions, and UL certified the steel used to 2,000°F for six hours, the buildings cannot have collapsed due to heat from the fires. How is this possible?

Recall also the photos of a live woman, a blond, squatting, then standing, in the gash of the impact zone. How hot was it there?

The main culprits [...] were the two intensely hot infernos...

Then we get to the pancaking. which floor after floor was instantly crushed and then sent into near free fall...

It's important that they say "instantly" and "free fall" because the video of WTC 1 and 2 collapsing tend to show that nothing obstructed or delayed the top floors on the way down.

If the pancaking happened, would we not expect some slight delay as each floor struck the one below? Some puffs of debris and smoke?

And how about the huge central support pillars (unmelted and unweakened, certainly) of the lower floors? As the pancake hit them, would they not tend to delay the collapse? Would these huge supports not tend to jut out of the rubble? And why did they fail with such precision, allowing the towers to fall straight down and not topple?

Has anyone that you know of ever tried to model this pancaking effect with a large mockup of the towers, to time how long it takes for the top floor to reach the ground?

No, I don't think the experts and publishers are all part of some conspiracy of lies. I think they're groping for an explanation that doesn't stray into the realm of the unthinkable.

And no, I haven't made up my mind. For nearly five years I was content with the prevailing theory, and argued in favor of it. But now I have questions.

Sunday, May 21, 2006

Large, swift and scary wasp

What happens when you pit a large, swift and scary wasp against a slow-moving, weak, yet very handsome and intelligent cripple?

See, one evening I opened the window in the study to let in some air, and immediately this very loud flying insect flew in. I thought it was a large fly, and resumed bravely typing my inspirational blog about my heroic and tear-jerking fight with a cruel and implacable disease that wants to leave my children fatherless. You know, that blog.

The loud buzzing continued, and a few minutes later I looked up. Holy cow, a wasp! I was in shorts and bare feet. I had just that very day endured and survived the stomach ache believed to have been brought on by the bittering agent in the hand sanitizer. So I was a bit sensitive about my soma and didn't want to wind up in the ER with some bizarre toxic reaction to a wasp sting. I retreated from the study.

When I returned a few hours later to take my pills, the wasp was gone and I assumed it had flown back out the window, which I then closed.

I tend to get dressed in the study after my morning shower. Doing so, my exquisite naked flesh is exposed to any angry wasp that wants to repeatedly sting me.

After I posted my blog entry, I heard a buzzing, and saw the wasp flying around the lights. I asked my intrepid wife to capture the wasp. You have to understand, this is the woman who I once saw capture a large, ugly spider from a wall using her bare hands!

But she had various duties, so I prepared a weapon, all the while telling myself how stupid it would be for me to get drawn into combat with the wasp, and yet knowing that my hubris would draw me in.

The weapon was a tubular mailing package, about 18 inches long, with concave caps on the ends. I knew how dumb it would be to trap the wasp in the cap gap, and then be stuck holding the tube up against the ceiling while my weakened muscles screamed in agony, and then to be repeatedly stung when trying to flee the room.

So I put overlapping strips of masking tape across the end of the cap, to create a firm mashing surface. Then I put some tape with the sticky side exposed on top of that, to create a trapping surface. I also grabbed an empty 32-ounce yogurt container, just in case. I went into the darkened study and my eyes lit upon a small lump on the carpet, probably a piece of the debris I am always creating during my infusions.

I thought how ironic it would be if the lump were the wasp and my treading near it caused it to fly up my shorts and sting my perineum.

Lo and behold, the lump was the wasp! I readied my weapon. As I lowered the sticky end, the wasp began to crawl over the carpet. If it had flown upward instead, it probably would have stung my conjunctiva.

Instead I quickly mashed it with the weapon. Success! I left the weapon in place, braced by the empty yogurt container, assuming that the wasp was alive, injured, and pissed. Then I went and bragged to my intrepid wife, who was preparing lunches for the kids to have at school. What must it be like to have a cripple whose elocution is worse than that of the village idiot in Monty Python bragging to you about what a daring man he is?

Later I went in the study and looked at the aftermath. The wad of tape completely covered the wasp, which seemed inextricably mashed to the carpet. I flipped over the tape wad and turned on the digital camera, to get a shot of the big scary wasp for the blog. It was still moving, struggling in a hopeless ... wait! NOT so hopeless! The big bad wasp extricated itself from the tape and began crawling on the carpet! I quickly mashed it with the yogurt container, and weighted that down with a 500 mL jar of olive oil that I am going to try using instead of mineral oil.

My admirable wife came into the study to make a phone call about a doctor's appointment I need to address this annoying cough I have due to the reactive airways.

She's beautiful, and she's brave, but she's clumsy, which is why she's covered with scars from childhood accidents. She was standing right next to the container weighing down the big, scary, angry wasp.

I began to try to edge the container firmly away from her -- and the wasp struggled out from under it, and started flexing its wings! I quickly slapped the container lid on top of the wasp and began repeatedly striking the lid very hard with the heavy olive oil bottle. Nothing could survive that! Drool was coming out of my mouth, like it does when I have a really tough poop. I didn't care -- I wanted to kill the wasp! My caring wife had finished the phone call, and she held a napkin under my drool and urged me to finish my breakfast.

Alone again, I decided first to get the photo of the doubtless dismembered wasp stain on the carpet fibers. I lifted up the olive oil bottle with which I had been doing the violent mashing, and flipped over the yogurt lid. Holy cow, the wasp is crawling around again!!!

I smacked the pointy end of the olive oil bottle onto the wasp and pressed with all my might. I was kneeling, and losing my balance. I thought how painful and ironic it would be if I fell on top of the wasp, which would them repeatedly sting me in the scrotum while I yowled and tried to crawl. So I focused my considerable knowledge of physics and geometry on not falling down!

I didn't fall, and when I examined the wasp, it looked dead. Just to be sure, I crushed its head or neck with needle-nose pliers. Then I took this photo.

Once again I triumph over nature, just as I hope to triumph over the natural malady which now afflicts me.

Saturday, May 20, 2006

Today's a new day

According to the 9/11 Commission Report:

When they learned a second plane had struck the World Trade Center, nearly everyone in the White House told us, they immediately knew it was not an accident. The Secret Service initiated a number of security enhancements around the White House complex. The officials who issued these orders did not know that there were additional hijacked aircraft, or that one such aircraft was en route to Washington. These measures were precautionary steps taken because of the strikes in New York.

Question: Why did the Secret Service allow Bush to remain in the classroom of the Emma E. Booker Elementary School after the second plane struck, when according to then Chief of Staff Andrew Card, "America is under attack?"

The President remained in the classroom for another five to seven minutes, while the children continued reading. He then returned to a holding room shortly before 9:15, where he was briefed by staff and saw television coverage.

This passage does not describe the Secret Service trying to hustle Bush out of the building in those minutes -- not even suggesting it. Why not?

Compare and contrast with how Cheney was treated 20 minutes later:

This news prompted the Secret Service to order the immediate evacuation of the Vice President just before 9:36. Agents propelled him out of his chair and told him he had to get to the bunker. The Vice President entered the underground tunnel leading to the shelter at 9:37.

Friday, May 19, 2006

My last words

As I've said, I think my hands will outlast my voice, in terms of communication. I've previously imagined having last words -- but speaking them. My voice is so mushed now, that if the malady ever kills me, it's not likely that I'll get to say anything. So I want you to know what my last words are. If I die, at some point, you all will please tell everyone that my last words were:

It was ... fun!

That's a quote from a movie, and yes, I do want and intend to be this cheesy.

As I write this, on Mothers Day, I am very tired from a probable self-poisoning incident.

We went to the park, I in my wheelchair that my hardworking wife disassembled and put into the car. I used some alcohol-based hand sanitizer after using the port-a-john with the graffiti on it.

We got home about half an hour later, and I idly tried to pick some food out of my teeth with a finger. The finger tasted bitter, from the bittering agents in the hand sanitizer. They want your body to reject the stuff. That was about 1:30. By 1:45 I had a stomach ache. I lay on the floor. It hurt bad. Not sharp, but dull. My dedicated wife called the poison control center. They asked if I were a drinker who was on one of these medications that make you hurt if you drink booze. The last alcohol I had was a genuine local Czech Pilsner in 1996 in Prague. But I am on minocycline, and they tell you not to drink alcohol when taking that. My loving wife agreed to my request for privacy. Plus, she had to put two kids to rest time.

I thought I might defecate suddenly, and prepared a shirt to catch the mess. Then I struggled down the stairs to the bunker john. I had sweats and felt hot. I was drooling everywhere. That's a normal part of my regular malady, but normally I control it by swallowing or wiping. But this time I didn't care. I lay down on the cold, dusty concrete. It was a very slow, controlled fall. I thought: This is what 'abject' means.

I thought I might throw up. Ordinarily I dread throwing up and will do anything possible to avoid it. But now with the pain in my stomach so bad, I welcomed it. I got to my knees and pillowed my head on the toilet seat rim. I didn't hurl.

Then the pain receded. I checked my watch: 3:12 PM. Only an hour and a half of misery!

My hypothesis is that the bittering agent passed through my stomach, where there are sensory nerve endings, and into my intestine, where (presumably) there aren't. Or maybe the bittering agent just reached a dilution threshold. I don't know. I bet ShutteredEye would know.

It might have been a gallstone attack from the constant use of ceftriaxone, but Wikipedia says those are worse than the pain of childbirth, and almost always happen at night while lying down. This happened at mid-day while sitting up. And though Wikipedia didn't say anything about suddenness, I gather that a gallstone "attack" is sudden. My pain grew gradually.

Anyway, while going trough this agony, I thought about crawling to the computer and blogging that my last words are: It was ... fun!

Those are my last words. It's official. I won't have a grave since I am donating my corpse to science. But if I did have a grave, the tombstone would say:

It was ... fun!

Those are my last words. Trust me, if I know I'm dying, I'll be thinking them when I die.

Thursday, May 18, 2006


NEW YORK - The foundation in charge of developing ground zero's memorial and museum pledged to permanently display the two pieces of steel left standing in the shape of a cross after the World Trade Center collapsed.

Shortly after 9/11, all World Trade Center rubble, including steel supports (analysis of which could put the lie to the demolition-charges hypothesis), were shipped off as scrap to foreign countries to be destroyed and re-used. But perhaps ironically, one piece remains. This piece wasn't melted by aviation fuel which burns about 1,000 degrees Fahrenheit less than required to melt steel. What chemical traces does it bear? Let's test it!

Still in its last throes

Recall this from June of 2005:

WASHINGTON (CNN) -- The insurgency in Iraq is "in the last throes," Vice President Dick Cheney says, and he predicts that the fighting will end before the Bush administration leaves office.

Four more were killed today. The sooner the Bush administration leaves office, the better.

Wednesday, May 17, 2006

Play with me

There came a certain point when I was about three, I think, that I began to notice my parents (mostly my father) moving away when I wanted them to play with me. Even as a toddler, I noticed several times that when I happily ran to talk to my father, he vanished behind a closing door just in the nick of time. It seemed to me that perhaps he was trying to avoid me. I considered that, but then discarded it as impossible. It was just coincidence. I decided to quicken my step the next time. But it kept happening.

Anyway, by the time I was about three, I noticed them moving away when I had the idea to play. They would suddenly get busy, and explain that they had important things to do. By this time I would say "Play with me!"

It was gradually dawning on me that maybe I didn't have the right to demand that they play. My father confirmed it once with a blunt "No!"

You may think this is a trauma, but I had a pretty good childhood, and felt loved.

Tuesday, May 16, 2006

I'd be a wreck

A reader emailed me:

...I just went back and read your transcript of the diagnosis, and it struck me that the appointment was January 2004 and it is now May 2006. That would mean you've had a diagnosis of ALS for a little over two years, and if you were correct in your assertation that day that most ALS patients don't survive more than four years post-diagnosis, that means you have approximately less than two years to live.

And I can't help but think, if I were in your shoes, facing that kind of future, I'd be a wreck. Do you think about the future much, or do you focus on the day-to-day things to keep yourself sane? How do you handle mourning the loss of your future?

(I'm only comfortable asking you about this because you are so forthright in your blog, and you seem to be very OK with answering questions like this, but please, do NOT respond if you feel uncomfortable or if I'm asking too much from you.)

I think of you often, knowing there are so many more people like you out in the world that I don't have any way of knowing, but I am so glad to have "met" you and that you have chosen to share your story with the Internet. I do, honestly, believe that I will continue to think of you every so often, probably for the rest of my life, and think about your family and your children, and hope that they are well.

I have made a small donation to ALSA ( in your honor, even though I do not know your name. I just wanted you to know that you inspire me.

I think I've got more than two years in me, maybe way more. We Shall See. I don't mourn the loss of my future. I see the future as my friend. I see the possibility of getting "locked in" -- or dying -- and leaving my children fatherless as horrifying -- but hypothetical. We Shall See. Thanks for thinking of me, and for making that donation. I appreciate that I inspire you, but just imagine that I'd never gotten sick, and was instead crassly commuting to work every day. How inspirational is that guy?

Monday, May 15, 2006

Captive minds

I gain the most fascinating insights into right-wing self-deception at Greta's blog.

I posted this...

It’s not a partisan issue, it’s about child safety

Greta has frequently blogged about her concern for children, at least when it comes time to bash the ACLU. Here’s a child-safety issue. What might the cause and solution be?:

CHICAGO - America may be the world’s superpower, but its survival rate for newborn babies ranks near the bottom among modern nations, better only than Latvia.
Among 33 industrialized nations, the United States is tied with Hungary, Malta, Poland and Slovakia with a death rate of nearly 5 per 1,000 babies, according to a new report. Latvia’s rate is 6 per 1,000.

The first comment took me completely by surprise, as I had never encountered this meme before. I think it comes from the self-labeled 'culture of life' that seeks to use concern for the unborn to justify various inhumane policies:

"Well, here’s another example of numbers being printed and just left hanging with no explanation. Anybody who works in a NeoNatal environment in the US can tell you that our numbers are “higher” for the soul reason that we are the only country who in many cases will try to save the “hopeless” cases. Children who would not even try to be salvaged in European countries are routinely given every chance to survive in the United States. Unfortunately, when you are talking about a child weighing 2 pounds or less, efforts are often not successful. But, this is recorded in the US as a live birth, and then a death (even if they only “lived” for a few hours). And those are the children who push our numbers out of whack."

I did a little research and commented:

"I am under the impression that the infant mortality rate is the number of newborns dying under a year of age divided by the number of live births during the year. One assumption in your theory is that babies born with a heartbeat but premature in merciless places like Europe are not even counted as deaths if they die.

My hunch is that if we accept your explanation, it would take an unreasonably LARGE number of preemies to get us to five newborn deaths as compared to 1.8 per 1,000 for Japan. In 2003, about 490,000 babies in the U.S. were born prematurely. This is 12 percent. As of July 2006, there are an estimated 298,444,215 people in United States. That’s one preemie per 609 people. I’m not very good with math, but with a 2005 population of 128 million, Japan would need to be not even trying to salvage 2.77 times as many preemies as we do to explain, per your theory, why our mortality rate is 2.77 times as high (5 divided by 1.8). That requires 1,357,300 preemies to be not salvaged and not counted in Japan, or one per every 94 people. But the birth rate in Japan is 9.37 births per 1,000 population (2006 est.), or one for every 106 people. According to your theory, the prevalence of unsalvaged an uncounted preemies in Japan has to exceed the official number of live births!

Based on the numbers, I think that you may be in possession of some spin that someone wanted you to believe: “Oh no it’s just because we CARE enough to try to save them”. Or I could be totally wrong. I’d love to see the evidence."

Just when I thought it was over:

"Maybe it is Partial Birth Abortion. Maybe they are counting the children as alive if they come out capable of living, but who the doctors then kill while they are in the process of being born."

Amazed, I wrote:

"Good one Don. You never give up, even when you have no point. I admire your determination.

But if that absurd scenario explains our higher infant mortality rate compared to Japan, it would have to be a HUGE number of instances. I am laughing at you. If you want to do the math, go ahead. "

Then another one...

"I don’t know brain, I was thinking the same thing... I think it’s a pretty valid and poignant point.

What’s your explanation, brain?"

I replied:

"It’s poignant, all right, which is why I think it jumped up in Don’s mind. (Don, I would like to acknowledge that in my last comment to you, I was being offensive and derisive. On purpose).

But ... this is such a ridiculous notion. It shows how your thoughts are controlled by your ideology, rather than the other way around. You think what your religion and politics tell you to think — even if it means naking utterly fatuous statements like Don did.

So-called PBA (an innaccurate, political term) is extremely rare. No POSSIBLLE way it could account for a 2.77 times higher infant mortality rate versus Japan.

But even if it did — Don’s notion that doctors would CHOOSE to count the baby as LIVE and then KILL it — is absolutely insane. Delusional. Sorry to say it, the idea is just plain stupid and not worthy of even Intelligent Design Don.

> What’s your explanation, brain?

I don’t know the answer, but I suspect that our infant mortality is so high because we neglect the medical needs of mothers and children. That’s my hunch in a nutshell, though there are doubtless many ways that it unfolds."

Sunday, May 14, 2006

Giving up my license

When I went in to renew my license a while back, the lady behind the desk noticed how cripped I am and issued me a temporary permit while saying I'd have to get paperwork from my doctor and possibly have a driving test.

I made an appointment with my local neurologist to check me out, and though I drive a lot less these days, when I did, I practiced driving safely in a way that would conceal the extent of my disability from the future driving tester.

It's hard for me to extend my left arm, and uncurl the fingers on that hand to grip the wheel. When cornering, my left hand tends to slip off the wheel. My right arm and leg are capable enough and have good enough reaction time for emergencies, but I think good driving requires two hands on the wheel.

I drove to the doctor's office and arrived at the address two minutes late. The usual parking lot was closed for street construction and the disabled parking spaces were filled, as was all the street parking, as usual. I saw a spot, and had to execute a t-turn to get to it. The driveway I pulled into was another entrance to the parking lot. But the little wooden gate arm was tagged "Physician Entrance Only." Undeterred, I executed my turn and pulled into the space, which said "Taxi Stand -- No Parking." I also noticed that I was using my right hand only during much of the turn. It made my execution clumsy and, had there been an emergency, inadequate. That's when I decided to give up my license.

It may seem like a very big deal to you, but I spent many years proudly not owning a car, riding my bike or public transportation. I reluctantly bought my first car at the age of 32. Now I have a wheelchair that gets me to local destinations. I don't need a car, but I worried, as I drove home, about the added burden on my sexy wife, as I had not discussed this with her.

I have a new crutch with a cuff brace for the wrist. I had taken this with me on the trip. Coming back into the house, I tripped on the rug in the study and fell (how ironic) onto the crutch, giving myself an owie but emerging uninjured. I was hard to untangle myself from the crutch because it has all these rubbery, hinged parts on it.

I figured that my deserving wife can drive the fancy new Subaru all the time instead of just sometimes. However when I talked to her, she said I could get the car modified with special equipment that makes driving easier for the disabled. So, OK, we decided to explore that.

But then when I went to see my doctor, he examined my arms and said "No, I don't want you driving when I'm on the road. Uh-unh, I can't do that."

So my last legal experience driving, ever, may have been the drive back from the doctor's office.

Or I may gradually get better and obtain a new license.

Saturday, May 13, 2006

Premium Blogger

Many of you have noticed that (Blogger) has been increasingly less reliable. It is often unavailable, so you can't post or read other blogs. So. Here's what I think we can expect:

Try new Premium Blogger -- It's FREE!!!

Premium Blogger is free to sign up for and means that your blog will be hosted on new Premium Servers ... to ensure that your audience can enjoy it 24/7!

To help Blogger pay for the new Premium Servers, a small ad will appear in a corner of your blog. You can block any ad you don't like!

And if you choose not to sign up for Free Premium Blogger, you'll still get the same reliable blog hosting as before.

Standard Blogger will rapidly become a Bantustan. Your option to "block" an ad will require you to submit to a new one.

Left grip is 22 pounds (22, 18, 18), right grip is 58 pounds (58, 56, 55).

Friday, May 12, 2006

Savage Love

Dan Savage writes "Savage Love," an advice column for people who like to ... do stuff. Sometimes they want to do it with men, sometimes with women, or both. Animals, even. Cars. Golf bags. Fruits and vegetables. Often in the column, certain situations or objects, including bodily secretions, heighten the satisfaction of the person seeking advice. "Am I crazy, Dan?" they'll write, "I get off on XYZ!"

Savage has written that he assumes that a portion of the letters sent to him are fake. I think he chooses to print them if they describe an issue worth discussing.

Recently he printed a letter that I thought was fake ... and dangerous. I wrote him:

You bought it Dan: Someone in the child porn industry, or who likes child porn, sent you a fake letter about two underage kids filming each other having sex, and you printed it. The message they successfully got you to convey was "B-but -- what if the kids THEMSELVES make the porn?"

Don't help them build a moral loophole.

Within a day came the reply:

oh, don't be an idiot. you don't think that people, even young people, with the means and the libido, film themselves having sex?

I replied:


While I am amazed that someone as famous as yourself would respond at all, and so quickly (or have an intern or some web-based factotum respond so quickly), I am equally amazed by your assbitery in failing to grep my point. Sure, teenagers might film themselves, and probably do, but my email is about you being an idiot (there's that word again) and aiding and abetting a PR campaign by the CPI.

Analogy. A biotech company is now trying to create cancer-fighting compounds using tobacco plants. This isn't just good science, it's good PR. If they get it to work, we'll never hear the end of "...but tobacco fights cancer!" The whole bit about "...but the kids filmed THEMSELVES!" fits right in there.

Sure you can print whatever letters you want. Sure you're probably not the first. Sure, anyone could have thought of it. But why be an idiot and help?

Just to make sure your factotum doesn't write back, I ask: "Hey, how might I become an advice columnist like you did? I have plenty of advice."

Nonetheless, the reply:

there is no CPI, no conspiracy. jesus.


As for the "CPI" (child porn industry), I consider it an industry if there's just one person buying and one person selling.

Left grip is 23 pounds (20, 23, 20), right grip is 64 pounds (64, 60, 58). Maybe it's an off day caused the the constant wheezing cough of my reactive airways, or maybe the downward slide is continuing. We Shall See.

Thursday, May 11, 2006

Mothers Day cards

My son said I should go to the drugstore and buy Mothers Day cards for him and his sister to give to my deserving wife. The three of them were going to an ice cream social. He told me that his should have a Snoopy on it.

I went in the wheelchair, and by chance ran across the mechanic who had tried to fix my wheelchair the other day. I thanked him and got his card. He was working a job.

At the store, I bought two Snoopy-themed cards, so that my daughter wouldn't break into tears: "But I wanted the Snoopy card!"

On the way back, I made a plan for what to do if they both wanted the same card: Coin toss.

Up in their room, predictably, they both wanted the same card. "We're gonna flip a coin," I said. "The bird is for her and the person is for you."

I tossed it and it came up tails (bird).

"So she gets the card," I said. Instantly he broke into tears: "But I thought..."

Sigh. I guess he's never done a coin toss before.

Wednesday, May 10, 2006

Personal Low-Dose Naltrexone trial ends

At Scott's suggestion I tried low-dose Naltrexone, for about five months at 4.5 mg per day. On May 3 I took my last dose. I didn't experience any benefit that I noticed. Now we'll see if I can attribute any problems to ceasing to take it.

Tuesday, May 09, 2006

I hit my son

On Monday, May 1, I got up at seven AM after four hours of sleepless discomfort due to constipation. My legs were cramping and trembling as I lay in bed trying to relax. You might ask why I didn't get up at some point during those four hours and sit on the toilet. I plead experience. I've had many battles with constipation, and I knew how tired and cold I was. There is a big disappointment in thinking you are going to grunt it out this time, and winding up yet again yawning and trembling on the cold toilet for so long that you eventually have to give up. I had been simmering this one for a full four days, taking Citrucel almost every day and mineral oil every day, drinking tons of water. I had used a suppository the prior day, but the resultant turd was tiny. My strategy used to be to go after it aggressively with laxatives starting on the second night. But that led to many episodes of severe abdominal pain, as I writhed and moaned on the floor in agony. My new strategy since quitting the Namenda whose side-effect is constipation, is to do the Citrucel, mineral oil and probiotic every single day, adding at least a liter of clear water beyond my normal daily consumption. Don't take oral laxatives and don't try to force it out, even with enemas. Just drink lots of water. This will result in discomfort, but nothing like the torture I've been through previously.

My athletic wife got home from her morning jog at 7 AM and stepped into the shower, and I went downstairs. It's sad that she must run so early, but mothering is a very demanding job -- "I have needs too" just does not compute for kids.

While she showered, I laboriously put on my thickest jacket, and my shoes. My legs were trembling so much that I had great difficulty getting safely across the thick carpet without falling and down the concrete stairs to the toilet under the house. You might think I'm trying to build up a store of sympathy in the reader for later exculpation, but really I'm just trying to make you work. Three feet shy of the toilet my legs went into such spasms that I had to concentrate solely on maintaining position, not falling. Then the discomfort seizure passed and I sat on the toilet. I listened to the water run in the shower upstairs.

It was uncomfortable, but the decisive moment came within five minutes. I have a new rating system for bowel movements, which I track on my wall calendar. I rate them on a scale of five, by perceived mass, with five being the largest. I know it's a subjective measurement. This one was a five.

I was very relieved -- literally -- but sleepy, all morning. My hardworking wife took both kids to school. I pay a masseuse to come to our house and massage me every two weeks or so. She is strong, and could kill me, but only uses a little pain. Generally, it feels good. The thing I liked about the session that day was that I fell asleep briefly, several times during the massage. I had weird little dreams in the form of impossible thoughts. I liked that.

You're not supposed to look a gift horse in the mouth, but here goes. A friend who cares about my condition and wants to help the family very kindly offered to bring us dinner. Over the course of about a week, there were numerous emails. The decision was burritos, and I typed up a description of my kids' picky preferences. This woman has two girls, so she ought to know that kids can be picky.

Then it became an issue of whether the adults would like Chinese food. I said "Whatever" without thinking about how it made no sense to get burritos for kids and Chinese food for adults.

I was sitting at this desk, in the study, when our friend arrived. I stood up, and lost my balance. I tried to plop gracefully back down in the chair, but fell instead, knocking over the computer so hard that it made a dent in the wall. You might think I'm trying to build up a store of sympathy in the reader for later exculpation, but really I'm just trying to make you work.

I was unhurt. I worried that the women would come rushing to help, and fling the door wide while my kids stood there gawking at me splayed helplessly in the corner. But fortunately they didn't. It's complicated getting yourself out of a tangle when your muscles don't work properly. I set about untwisting myself, and after a few minutes sat up in the chair.

I felt more clumsy than usual. I hoped I was just having an off day due to the stress and leg cramps from constipation. When I went out in the other room I was greeted by our friend who'd brought dinner. When we hugged, she inadvertently drove her right shoulder directly into the needle on my left shoulder, hard. It was brief, and no damage was done.

She wore colorful clothes and a low-cut blouse. She's older than I am but she looks young, thinks young, and feels young. I think of her as young. To some of my younger readers, horrified by old ladies who try to stay hip, this may seem absurd. This is an old tart -- Just look at the backs of her hands, see those big lumpy wrinkles? She's not young! Well but I knew her when she was young, and I say she still is. So there. If you have problems with that, write me when you're 50.

We'd been visited recently by a guest from out of town who took us to Dim Sum and then the next night bought Chinese food. Our refrigerator was stuffed with it and we slowly plowed through it until I was sick of it. My aversion still had not worn off.

Our friend had brought Chinese food. "I know you wanted burr-ee-toes," she said playfully to my son. So much for the exacting descriptions of the kids' burrito preferences. I should have known that's what the email dance was about. You shouldn't look a gift horse in the mouth. She wanted to help, and she did. The kids loved the meal.

But before that, I hit my son. The workers are building an extension on our house, to provide a bathroom and bedroom that can be reached by wheelchair. I am using the wheelchair, two or three times a week, for short trips to the store and such. The extension can be accessed by climbing out of a window in our dining room. Later, the window will be replaced by an archway leading to the extension.

The week prior I had suggested to my daring wife and son that we all climb out the window and have a look around the framing for the new addition. My son was well behaved, even helping me move my foot over the window ledge and bringing a chair for me to sit on as I came back. What a great kid.

This time I worried that I might fall, so I decided to stay inside. The two kids and the two moms went out. At a certain point my son decided to do experiments. He shoved a rod down a currently very narrow hole for the drain in what will become the shower.

My daughter was insisting on carrying the carpenters' level all by myself. It was the witching hour, the period right before dinner when kids are tired and hungry and start to get cranky. My son insisted on continuing his experiment, even though we had told him to stop. He started to run around. My loving wife had to pick him up and physically carry him to the window. He climbed through. I was sitting on the floor, behind him.

The first time out, he had accidentally knocked off a dusk mask. I picked it up. When he came back in at one point to go pee, he knocked it off and I picked it back up. Going out again, he knocked it off and I picked it back up. This time, now that he had been returned under protest, it was mightily important that he climb out the window again and return the mask, which had again fallen, to it's place on the ledge.

Why not just trust him to do that? Those of you with children know that the drip becomes a river. I told him not to go out again. He groan-whined that he had to return the mask. Never mind that two grown women and a girl were right out there and could have done it. He put his head and chest through the window opening and lifted up on his arms to swing his leg through. I grabbed his shirt from behind.

In that look-what-you-made-me-do way, he tried to leap up, snapping his head back against the window frame, which rattled. Then while yelling about it being my fault, he kicked me, deliberately and quite well, in terms of potential effectiveness and intent to harm; His leg was straight when it made contact.

This made me disappointed and briefly angry. I grabbed him and pulled him down to the floor. "You are not allowed to kick me!" I said. From his perspective, he was being manhandled by a large, mean person who was in the wrong.

What did I expect? It was stupid of me to think he'd say "Yeah, I see your point," or "Let's sit down and talk about this." He just kept struggling, and mouthing off about how I wasn't hurting him. My anger was gone but my frustration was building. I kept saying "You are not allowed to kick me," and shoving him back down on the floor as he mouthed off and resisted.

It was stupid of me. I was trying to use physical force to make a point about not using force. Easy to see now, I didn't see it then. I just really wanted to get across the point that he shouldn't kick me.

He went hard and talked tough, as most any kid would do.

After about five repetitions of this, my stupid primate brain decided to make my point and 'win' the argument. I made a fist and hit him on the back.

I hit my son.

Not very hard, by grown-up standards, part of the reason being that I am weak. Part of the reason being that no sane parent wants to harm their child. I estimated later that it must have been like being hit by an apple dropped from a height of three feet. But he knew he had been struck by a fist.

My behavior was stupid because it conveyed the message that when you think you are right, it is OK to hit people, that force is a way to express yourself.

I had previously decided to try never to use force with him, because he was likely to turn around and do the same to his sister. The last time I remember hitting him, I think he was four. He was in an extended screaming tantrum in which he repeatedly tried to kick me. I think I was trying to get him to bed. It wasn't a situation you could just walk away from. He would have exploited the victory his anger had won and stayed up for hours, each time trying the screaming and kicking again if we had tried to put him to bed -- to experiment with the new technique, see how far it would last, wear it out. As you can imagine, I repeatedly asked him and warned him to stop the kicking. He agreed several times and then kept doing it. At one point, he clocked me right on the ear. I instantly walloped him in the stomach. He cried.

While I think that it is wrong -- and stupid -- to hit kids (especially spanking), I do think there is a silver lining to the failure when a parent strikes back. Though it's a parental failure, it teaches the lesson that everyone -- even parents, who kids often don't think of as people -- has their limit and can be pushed too far.

My father yelled and cursed a lot, but he didn't hit us as a matter of course. He just seemed like he would. I do recall one or two shocking cases where I hit him (probably repeatedly) and at a certain point he got ticked and hit me back. Obviously, a grown man could kill a kid if he hit with the aim to harm. Even I could, weak and disabled as I am.

No doubt some of you are going to say that hitting kids is wrong, teaches the wrong lesson, and spreads poison down through the generations. Agreed. That's why my policy is to not use force (even the grabbing-by-the-arm force -- unless there's a sudden, surprising risk to the child or a delicate object).

This is a blog, where I disclose my private life to strangers, private thoughts, imperfections. I failed. I hit my son. I'm not, of course, excusing, advocating or promoting such behavior, though some may delightedly seize on the silver-lining reference I made above, and try to twist that into an endorsement.

I let him go, and he refused to apologize for kicking me. He said I first had to apologize for grabbing him and making him bang his head.

Our friend who had brought the dinner loves seeing the dark side, drama. She'd seen everything. I know because she described it to other people, adding some inaccuracies, without discussing it with me first. I sat on the couch, and she stood at 10 o'clock, about six feet from me. She was very satisfied. "Yeah," she said, "Yeah." She meant it as affirmation: Parenting is tough; You guys are gonna be OK; Glad that's all over now. But she resents me for being so seemingingly untouchable, and inside her was a voice cheering "Yessss!"

The next day she sent me a long, rambling email which never once mentioned that I had hit my son. It was supportive: Parenting is hard, kids can be monsters, despite how much we love them. It was supportive but since she never mentioned the money shot, it was like she was having foreplay with herself.

Two days later, I told him I wanted to apologize. I apologized for hitting him with my fist after he'd kicked me. I usually like to make my apologies to kids in front of other people, to demonstrate that a grown-up holds themselves accountable for their own actions. I did this one with his sister standing right there, and their mother in earshot.

I don't like the school of "apology" that is really an explanation that it's all the kid's fault, but I did mention that he kicked me. And then I explained how stupid it was of me to think that hitting someone would explain to them that kicking and hitting were wrong.

"I'm sorry," I said.

"I understand, Dad," he said. "I forgive you."

Monday, May 08, 2006

Al K., master of pseudoscience

On April 8 I created a hypothetical government spying program and asked the folks at the Hooah Wife blog how they'd feel about it. I was appalled that several people thought it was a good idea. The hypothetical I'd described was inspired by a government spying program in Communist China. When I revealed this, and called them commies, some took umbrage. Not Hooah Wife commenter Al K., he cooked up a plan to hoist me on my own petard. Or at least, I assume he did. We've emailed each other before. A few days after my hypothetical, he emailed me a scientific article called "Transgressing the Boundaries: Towards a Transformative Hermeneutics of Quantum Gravity."

Usually I read all of what Al K. sends me. But this time my opinions jumped right to the fore. As soon as the author wrote

It has thus become increasingly apparent that physical "reality," no less than social "reality," is at bottom a social and linguistic construct...

I emailed Al K. and informed him I didn't buy it. I think I used the words "horse puckie."

That's when he let on that the paper had been written as a joke, a sort of social experiment.

I think Hemingway once described as education as a B.S. detector. I didn't detect that this paper was a joke, but I did detect that it was intellectually bunk. I give myself a pat on the back for passing Al K.'s test, if it was one, with flying colors.

Sunday, May 07, 2006

Abu qualsa nomka fleps

My sister had a nightmare that I called her about something important, but was completely incomprehensible.

On May 2, for the first time, I was utterly incomprehensible to someone over the phone. He had to come see me in person, where he understood my speech after I had written down for him my question that I had attempted over the phone.

Saturday, May 06, 2006

More about me

I have a cold.

I went to the prosthodontist yesterday and he continued building up the mold. He also filed down the tooth that is the main culprit in my self-mastication.

The sexy lady doctor at the ALS clinic where they expertly watch you die said that she doesn't think my case is chronic Lyme, because of the upper motor neuron involvement (e.g. what showed on the MRI). I say she may be wrong, and I'm willing to do something, unlike the people at the clinic, who are incurious to a fault.

Dr. Quack, though he may be saving my life, has not earned my respect. I wrote him a letter with questions on April 4, and he has not replied. Probably in his mind, since he met with us on April 11, that takes care of it. Except that neither he nor I had the letter, and there were questions not addressed.

The sexy lady doctor said that my wedding ring probably fits now due to fluid accumulation in the left hand, from lack of use.

My FVC scores on April 24 were 78, 78, and 80 percent. So I average those to 79 percent.

The MIP, or suck test, scores were 70, 70, 60. and 70.

The sniff test (nasal inhalation force) was new to me. They said that it more closely correlates to survival than the FVC. They make you do 10. Mine were: 30, 45, 42, 41, 53, 41, 57, 53, 41, 45.

My cough force scores were 380 and 350.

My peak flow rate scores on exhale were 480 and 470.

Friday, May 05, 2006

A little bit

On an outing with my special wife and daughter yesterday, the front wheel of my wheelchair scraped up against a small protrusion, and the solid rubber 'tire' peeled off the rim. A mechanic pulled up in a truck, and he couldn't get the tire back on. Neither could a bike shop. The people who provided the chair are mailing me a new front wheel. Sheesh!

My loving wife and I had agreed (before the ALS clinic visit where they kept trotting out the "whole family is involved" trope) that we should talk with the kids about whether they have questions or concerns about my condition.

But events conspire to forestall intentions, so one night after dinner, while my brilliant wife was in the kitchen, I asked my son if he had any questions about my problem. He's the kind of kid who wants to know everything about everything, and we're concerned that he may be suppressing his worries about me.





I figured I'd struck out. Then as he was clearing his plate, he said: "Maybe a little bit."

I nodded. "OK. Well, you think about it, and we'll talk again in a few days."

That night, when they were in bed, he asked me to come over so that he could hug and kiss me. We've done plenty of hugging and kissing, but as he's gotten older he's dropped that bit from his bedtime routine.

"Dad," he said, as I knelt by his bed "I wish there was something that could help you get around quicker."

His voice sounded caring and a little bit sad. What a great kid.

"Yeah, me too," I said, and patted him on the back. "But what are ya gonna do."

Then I knee-walked over to kiss my daughter, slowly and precariously levered up to standing while using two support points, and edged downstairs to clean up the kitchen.

A few days later I asked him if he had more questions, and he did, though I don't recall them all. One was why I didn't eat breakfast at the same time they do, usually. "It takes me a long time to shower and dress." One was whether I might have already had this problem as a kid, and not known it. "Maybe, but no one knows the answer to that." Another was not so much a question as a ramble on his part that contained the assertion he wanted me to react to: that when you can no longer move you are dead. I didn't affirm that one, but because of the flow of conversation I didn't lay out a formal refutation. My face probably expressed doubt.

He enthusiastically said that he would write all his questions on a piece of paper, and I would write my answers on the same sheet.

Thursday, May 04, 2006


I was raised without religion. My father was hostile to religion. We did do Christmas and Easter, though. Culturally hard to escape those. My mother had been Baptist when they married, but he forced her to stop going to church. The lie used in our childhood was that he "got lonely" on Sundays when she'd take the first born (my sister) to church -- so she stopped. This fact, plus what I've observed of her through the years, inform my belief that my father is my mother's religion. I am not hostile to religion, unless someone tries to assert that I really need theirs, in which case I neatly shove that bull-pucky back down their throats. I've thought about the message of the major religions: love, tolerance, and peace. I find the message worthy, however much contemporary religion does to undercut that message. I feel that there is a legitimate realm for spirituality to influence our lives and actions. Mine comes from within, and selects what it resonates with, picking out the bits of nourishment that survive the rivers of religious poison that drown our world.

From what I have observed, religion can help certain individuals. This is not broadly the case.

Since I have been blogging about my illness, I have attracted a couple of Christian proselytizers. They seem deaf to my objection to a god who withholds anything in the supposed afterlife from someone who was once just a baby and then grew to be an imperfect corporeal being, based on the religion they chose in life. Despite the centuries of the doctrine of damnation and hellfire, these contemporary proselytizers would like to blame the victim and pretend that the individual is at fault for withholding themselves from Christ.

Here's a typical threat from an email:

"[M]y most sincere desire for you is that you and your family will live for eternity together in paradise. I do not want you to have to think for one more minute that when you draw your last breath on this earth you will never see your dear wife and children again."

Wednesday, May 03, 2006

The wrong trousers

I grabbed a pair of pants out of my drawer and started to put them on. But the zipper seemed backward. Assuming that I had somehow gotten them inside-out (though this is topologically unlikely), I felt for the pockets and belt loops. They were proper. The button was on the wrong side. Am I wearing women's pants? I wondered. But then, shouldn't the ass be huge? My stunning wife is almost all tall as I am, only about half an inch shorter, so the pants could have been hers. I beckoned her. She confirmed that I was wearing her pants. I'm very skinny, but the fit of the pants was good. I'm not saying that skinny is good, so all you plush people can exhale. Oh, how I hate that offensive crap about how "real women" have curves (Translation: "Only we fat women are real. Thin women are not real, or women. It's OK to hate them"). My athletic wife is fit and thin and curvy, you misogynist witch, so tell me how that makes her not a "real" person.

Tuesday, May 02, 2006

T-Gen study needs you!

If you have ALS, please call your ALS clinic and give a small amount of blood to the T-Gen study. They need 250 samples and have so far not gotten even 100.

Do it, please!

TinTin and me

The first TinTin book I remember reading was "TinTin in America." I didn't like it. I found it disturbing. A major theme in TinTin is running around with guns and facing the danger of being shot. I don't think that I was quite used to that yet at the time I read the book. Another problem was that I had absorbed the concept of Native Americans as kind, gentle, caring people. The American Indians in the book were bloodthirsty, evil, savages. I now know that's not an impossible thing, but back then it bothered me because it wasn't what I had expected.

I believe that the next TinTin I read was "The Crab with the Golden Claws." The sea captain has a weakness for the bottle, which is treated as dangerous yet amusing. This is the first time I encountered the theme of drunkenness. My parents repeatedly drummed into me that there was nothing funny about it. I came to resent the drunken captain. It was also the first time I encountered an attempt to render dialect (the captain's). "Dad," I said, "These words are spelled wrong." He said that the spelling was intended to convey the character's accent.

The last, and certainly the worst, TinTin I read was "Destination Moon." I was already a big fan of the space program, and my reaction to seeing the rocket was "Cool!" Most TinTin books contain the entire plot in one volume, but not this one. It's a two-parter. And we didn't own the second volume. You keep seeing the rocket, and they keep getting just about ready to blast off. That happened over and over -- and I kept getting my hopes up only to have them dashed -- until, as I neared the end of the book and they still hadn't blasted off, I hated stupid TinTin.

Still do.

Interesting links from Scott on a high-fat diet shown to help ALS mice:

1, 2, 3.

I'm not planning on doing it.

Left grip is 25 pounds (24, 20, 25), right grip is 66 pounds (63, 65, 66).


Monday, May 01, 2006

Advanced Trigonometry

The Evil One had been threatening for several days now, but I went five by five in the bunker john after getting up this morning. Only four hours of sleepless discomfort were required. Things are improving?

When I was in high school my Trigonometry teacher, the head math teacher, gave us a little speech one day about how he had asked the school for funding to teach a Calculus course, and had been turned down. Then he said that in the first half of the year he was going to teach us Trigonometry, and in the second half he would teach us Advanced Trigonometry. He must have said that about six times. He almost screamed it. He got red in the face. It may have been obvious to anyone else, but I was a gullible dope.

When I was a freshman in college, I took a Calculus course. They began with a little review of Advanced Trigonometry. The weeks went by and I began to wonder when they would get to Calculus. I actually said this to another student in the class.

I took the final exam, and got an 'A' in the class. It was only after the class was over -- having been entirely devoted to 'Advanced Trigonometry' -- that I realized that my high school teacher had taught us Calculus.
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