Friday, March 12, 2004


In the interests of full disclosure I hereby reveal that yesterday afternoon, and this morning, my mood was down. Or fragile. Or what have ye. I think it was triggered by the Tai Chi class I went to (my first ever). It’s limited Tai Chi aimed (judging by the participants) mostly for older folks. I was the youngest participant there. I noticed some difficulty I have balancing from my left side, and lifting my left foot. What I have to remember is the lesson of the meltdown I had after weight lifting for the first time. How weak! Sob! Blah blah blah! So, in Tai Chi I have discovered new aspects of my limitations. I think that in a short period of time I will, as usual, come to see this as a new challenge, something to push back, a new angle on the game.

I suppose another factor was the stumbling around I did yesterday. When I do that, it makes me think: Progression!! Am I getting more impaired!? Is it moving quickly!? But I have to remember that I always stumble around after a workout.

Tomorrow will be the two-month anniversary of my diagnosis, and I really, really don’t want to be reporting the creepage of feebocity by the third month. Oh no. So the possibility that the foot or hand problems are getting worse also got me down yesterday afternoon.

I developed a new form of Tai Chi yesterday: Pick the biggest room in your house. Lie down. Maintain that posture until they go away to college.

Also, I suppose that I may by this point have already maxed out all the early gains I could expect from my strength building routine. There was a lot of weakness that I overcame quickly. So the low-hanging fruit has been picked now, and future gains will be less dramatic, I think. I was taking too much satisfaction from the strength gains. Attachment is the root of all suffering.

The name of my first computer (an 8-Mhz Mac Plus) was my own first name. The name of my second computer (a 60-Mhz Mac) was ‘Spiderland.’ The name of my 300-Mhz Mac G3 is ‘Europa.’ I have named my hot new dual-1.8-Ghz Mac G5 ‘Adonais.’ The idea is to change the name space each time. I never would have chosen Adonais in a million years under normal circumstances. I chose Adonais as the name because I have ALS. The name evokes narcissism, a focus on one individual, and it evokes the fact that many people care about me and don’t want me to die:

I weep for Adonais - he is dead!
O, weep for Adonais! though our tears
Thaw not the frost which binds so dear a head!

I am working on a video for the kids to watch if I die. It is geared to the kid level. Something that can comfort them. I read them a story, for example. I might also make one geared towards them as adults. I have met one or two people in my life who explained that they never knew their dad. I remember one guy sadly saying, “He died when I was four, so I don’t remember anything about him.”

I have memories from when I was a baby, too young to crawl. So I remember my dad yelling at my mom and making me afraid and start crying. I reached up my arms to her so that she would protect me. This happened several times in a short period. Maybe it was every day for a week. Maybe just three days. You may not think there is much going on in babies’ heads, but I remember thinking (without words of course): Oh, no ... he’s doing it again! For the rest of my childhood he was a vindictive, hysterical, paranoid, cruel, tortuous jerk. And no, I don’t just mean that he was firm, or that he cared too much. He was an out-of-control bundle of self-pity, something less than a man who took out his inner turmoil by punishing his wife and kids. He never hit us, he preferred to use words, and yelling, and a knowledge of the places where the human heart and spirit can most easily be harmed.

And I am not that sort of dad. And I am not that sort of person. Like some law of subatomic billiards, there is the particle that spins in the same way, and there is the particle that spins in the other way. I spun the other way. Chance. My good fortune.

I need to get some sandals for Hawaii. I will package all my pills in two separate bags for each day. That's, um, 28 bags. I worry that the people at the airport will think they are contraband. So maybe I will make a manifest, saying what each pill is. Not sure. Most terrorists try to appear guileless, so this could backfire.

I have been taking the evening riluzole on an empty stomach for a week now. As of this morning (today), I will take the morning one on an empty stomach too. In one minute, in fact.
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