Friday, October 29, 2004

Bible Man

Artist's concept of what Bible Man may look like.
As many of you may have guessed, I am not a Christian. However, I was flipping through the blogosphere urging people to vote for Kerry when I came across this man struggling with his life and his faith. His wife is threatening to divorce him. He seems to think most everything is a test from God. His wife has said he is angry and controlling. It being the nature of the blogosphere that people you don't know can post their most intimate thoughts, and you can comment on them, I commented:

> From what I have read in your blog, I think your
> wife may be on to something about you. You seem way
> too overwrought. And you have warped your
> relationship to God to the point where you are
> doubting everything, and tormenting yourself. A
> little healthy self-doubt is important, but you also
> have to have the ability to laugh at yourself. Your
> God does not want to sweat you and put you through
> pain. If you were with him, he'd put you in a
> reclining chair, turn on the TV, and ask if you want
> pretzels. God loves his creatures, and is not into
> hating. Not even divorce. I hate divorce, and we
> should, and you should. But God wants his creatures
> to be happy and live free of pain. I think God is
> very far away from the man who thinks he sees God's
> challenge in every daily thing.

He replied:

> While I disagree with much of what you wrote, I
> thank you for you comment.
> It appears that you are the one with a warped belief
> in God. Read Ecclesiastes. Clearly God does not
> wish to "he'd put you in a reclining chair, turn on
> the TV, and ask if you want pretzels." This is a
> very naive opinion of God. Moreover, for a better
> picture of tests, struggles, and problems, read
> James. James wrote, "Consider it pure joy, my
> brothers, whenever you face trials of many kinds,
> because you know that the testing of your faith
> develops perseverance. Perseverance must finish its
> work so that you may be mature and complete, not
> lacking anything."
> According to Proverbs, the Lord disciplines those he
> Lastly, as you so aptly noted, I do struggle with
> doubt. However, you must not have read close enough
> because you don't seem to understand the concept of
> spiritual warfare either.
> In closing, permit me to offer you a few
> suggestions. First, read up on that with which you
> wish to challenge somone. Apparently, you know
> little of or understand the God of Abraham.
> Secondly, research something called passive voice.
> It would greatly improve your writing style.
> Finally, pray friend, that you might know the peace
> of the God that challenges and disciplines those
> that call him Father, Beloved, and Savior.

I replied:

OK, fair enough. I hoped not to offend you, and though I may have annoyed you, at least I think I haven't offended.

If my concept is naive, then perhaps that is a good thing. It is true that the first definition (in English) of discipline is punishment, but the obsolete, and for our purposes perhaps more accurate, meaning is instruction. Teaching. As reflected by the other meanings of the word.

Certainly there are many tales of suffering in the Bible. But I believe that the instructions of God may also come in the form of pleasure and happiness, of acceptance and relaxation. These are among the means with which he instructs you.

I know there is a great deal of scholarship regarding why a god of love would inflict so much on his creatures. I am not going to take up that thorny issue. I would only suggest that pride and arrogance attend the man who thinks he can divine for others, his wife, and himself, the meaning of scripture. You were not equipped to fully understand and navigate the intricate plan of God. Our best response is to accept the simple message of Jesus: Love and forgiveness. Let God figure out the meaning of punishment and evil.

How odd, this internet, to bring me into conversation with someone I might shun with a shudder in corporeal life. I notice that he has now turned off commenting in his blog.

Wednesday, October 27, 2004

Death as Your Advisor

I had this email exhange with a friend.

someone sent this to me today. It was written by a man diagnosed with Lou Gerhig's disease. It's for everyone, all of us.

...I stand at the edge of a life made shorter by illness, and can't help being pulled out of the present moment into mourning my losses, courting my fears.   I sigh over my lost prowess as a hula dancer, I fear the day when I will be unable to lift a spoonful of lime Jell-O to my lips.  But we all stand on the edge.  The present moment is itself an edge, this evanescent sliver of time between the past and the future.  We're called away from it continually by our earthly pleasures and concerns.  Even now you may be thinking it's time for another cup of coffee and one of those blueberry muffins.  Seems it's always time to be doing something other than what we're doing at the moment.  While reading in your chair, you find yourself thinking about last night's argument with your spouse; you're thinking that it's time to rake the leaves, check your e-mail, get some sleep...

The present moment, like the spotted owl or the sea turtle, has become an endangered species.  Yet more and more I find that dwelling in the present moment, in the face of everything that would call us out of it, is our highest spiritual discipline.  More boldly, I would say that our very presentness is our salvation; the present moment, entered into fully, is our gateway to eternal life.

Yeah, thanks for this. It's hard for me to dissect my hostility towards this piece. I guess, for one thing this truth has been said so many times that, for those among us who don't yet get it: Well, xxxx 'em. And this guy with all his artfully crafted moon slivers and silver trim gets on my nerves. What he is saying is true but puh-leeze! Stop gently hammering your hand-crafted jewelry! And then finally I have realized that there is no basis for comparing afflictions. This guy is likely to die faster than I am, so on that basis I don't have the right to criticize the xxxxer. But follow that logic and only the dead, or those who were never conceived, have the standing from which to judge. Only an empty universe like an abandoned heart has grounds to cry out, to complain.

I guess one of my responses to ALS is that it's xxxxing personal. It's however I feel about it and I have every right to feel however I want. I don't give a xxxx about some guy with his reading chair and hula hoop. I only care about people I know. If I knew him, and he put it this way, I'd forgive him. But I don't know him, so in response to his Buddah talk I say: Well, Duh!

I hope this reply does not offend you, although probably it does. I'm not angry, or sad. Just acerbic.





Pope John Paul II holds his head as he presides over his weekly general audience at the Vatican. The pope urged listeners to think more about the inevitability of death than on becoming richer, more successful or more powerful.

I guess what serves me is that my progression appears to be very slow. If I am correct about that, and the Brasil Effect does not suddenly strike one day, then I have a shot at seeing my kids go off to college. And if I have a chance at that, then I have a chance of being around when the treatment to halt ALS is deployed.

Plus I have always felt that I am a lucky person. I always get what I need (if not what I want), and nothing is ever that bad. I squeeze through.

Plus I have a powerful, visionary form of denial on my side. I constantly believe that I am hitting bottom and the ALS is leveling off, going asymptotic. That sounds like a medical term meaning no symptoms, but it’s not.

So I guess that what serves me is my attitude. I read poetry and novels as a teenager. I thought about death. I learned that life was a wisp, and very precious, and should be appreciated as a blessing. I think it may be biochemical, but my somatic mood usually validates this belief. I pity those people who go through life moaning about their burdens, fretting the next thing, and looking back with regret. They have the wrong biochemicals, and they may know intellectually, what I have written, but their serotonin just does not back them up.

So I don't find myself turning to things that I need to give me stability and make it through. My family, and my life, are my solace and my salvation.

If my progression were faster, or if I had a serious, painful cancer that was wasting me away, necessitating painful operations, I cannot claim that I would be so serene and grateful. I would have some major grief to process really fast. But I feel that, although it might not be pretty to watch, I would be at peace with myself and those who love me before I died. I would get it done.

We Shall See.

...But wait, there's more! Right after I typed "We Shall See," a woman working for the insurance company with which I have filed for long-term disability called. She was pressing the point that the company needs to know what is preventing me from doing my job function for my employer. It seemed to me that they are seeking an angle to deny my claim. She mentioned, not in a threatening way, that their phone conversations are usually recorded. I had been hoping they were. I said that the forms submitted by myself and my doctor should be sufficient for her purposes. But she pressed the issue again. To me, it felt like a fishing expedition: Let's see if we can get the guy to say something that we can use against him. But my feeling is this: If your forms do not contain sections that provide all the information you need, then you need to make new forms. You don't need to ask me, on the phone, why I'm filing for LTD. You have forms for that. After telling her that the forms should be sufficient, I told her, politely, that if she had any further questions they should be submitted in writing so that I could have them reviewed by a lawyer. Then I said goodbye.

After that, I called the office administrator for my local neurologist to let them know what was going on. She said that she hates the big insurance companies, particularly mine, because "they always try to do this."

I immediately got another call, this from the teacher at my son's preschool, saying that I had forgotten to bring his lunchbox today. And it was true. He'd been rather uncooperative this morning, and amid all the contention, I spaced on his lunch!

Suddenly I was in a rush.

Immediately, then, I got a call from an administrator at the gym, slowly and peacefully explaining that they would indeed use my wife's new credit card for her account, not the old one. I wrote a note for MLW.

I had only minutes to go until noon. I drove over to the preschool with the lunch, creeping along behind an Acura cruising slowly past the high school, and dropped it off to him. He seemed happy to see me.

I'll prevail in the tussle with the insurance company.

And now for another dose of comparitive reality:

U.S. Army Sgt. Jessie Jackson screams in pain from shrapnel wounds while being evacuated in a helicopter with Spc. Dustin Hughes from a base north of Baghdad, Iraq Wednesday Oct. 27, 2004. Jackson said that he and fellow soldiers from the 91st Engineers were on an informant recruiting mission when insurgents fired a rocket propelled grenade, wounding him and Hughes.

Tuesday, October 26, 2004

Hasta mañana, cough

The good news is that my cough has diminished to the point where it only happens sometimes when talking. I hope it will be gone soon. Hasta mañana because it will be back, some day.

It sure feels good to be free of that new kind of terror I wrote about. That reminds me, I need to drink some prune juice this morning. Ever vigilent.

Uh, you know, my left hand has gotten less utile over the last nine months. It's not a severe thing, but I tend not to use the left forefinger when typing because it doesn't respond quickly enough. No biggie. I have three other fingers on that hand.

My chess rating on ICC is waaaaaay down. I don't mind. I play all comers and don't care if I win or lose. Some day (oh ho ho some day) I will get serious about this and try to improve my game by studying the books. Mañana.


Monday, October 25, 2004


Ladies and gentlemen, traitors of the press, and hated foreign emmisaries, welcome. Last night at 4 AM, coalition forces achieved victory in their latest campaign to relieve pressure on the central front. The battle was long, hard. Many were the sacrifices.

We allowed the evil one to escape. That was part of the plan. To relieve the pressure that was causing so much ... so much, ehhh... pressure.

This battle will have many phases. And it's not over yet. Our forces plan mopping up exercises later in the day. We have a plan. And we say to all food groups out there: You're either with us, or yer agin us.

God rest my anus.

Sunday, October 24, 2004


My cousin has a neighbor who knows someone who has recently been diagnosed with ALS. This woman sent me an email yesterday, and last night before I went to bed I wrote her a reply. Told her what I could, which is not much, and talked about how I don't feel like an experienced ALS patient. But offered to help with whatever information I can. I shared my pill regimen and my status. For not having much to say, it was quite a long email.

Last night while trying to motivate my son to get out of the bath, I accidentally popped him in the eye. Hard. This morning he doesn't seem to have much swelling or discoloration. The way it happened was that he was goofing around and not getting out of the bath, because of this toy. Those of you who don't have kids may think: Just let him come out when he's ready! But if you don't follow some kind of schedule with kids, some things never happen. Things like bedtime. So anyway, he kept ignoring me and I grabbed for the toy. There was lots of fumbling and grabbing as he tried to keep it away from me. I finally got a firm grip on it and pulled really hard. He was holding it with his feet. Suddenly he let go with his feet while curling his head down and my hand came free and in that split second popped him in the eye really hard. Poor guy. I apologized profusely and got him the ice and wet washcloth he asked for. He slept well.

I have not written much about my career situation in this blog. I am currently still on short-term disability leave. I have filed the papers to go on long-term (permanent) disability. That's scheduled to occur on or around October 29, 2004. That will effectively end my employment. Which I was really good at, and really enjoyed. It's a big topic and I won't go into it now. I'll treat the subject in more depth as the situation unfolds.

That new kind of evil I wrote about, the kind that has made me a prune-a-day man, is threatening our way of life again. Right now, as I write this blog entry. It hates us for our freedom. We called in the strategic prune force, and the chemical brigade yesterday morning. Then the prune strike again this morning, and inserted special forces. The battle is roiling and our units are overdue to call in to base. We'd like to send reinforcements. We're getting plenty of water to them. But at this point that's all we have. I've been hunkered in the downstairs facility for a while. The kids were running around making joyous noise and doing lots of thumping on my ceiling down in the bunker. This kind of battle is easier to fight when the kids are out of the house. This time it is my fault. I am allergic to milk, though I can tolerate acidophilus milk in small amounts. Two days go I drank an entire big glass of it. Idiot.

Where I live (U-S-A! U-S-A! U-S-A!), the radio network for intelligent people (in part state-sponsored, and under attack from the right), is called NPR (National Public Radio). Anyway, not as good as the BBC (except for This American Life), but it's good. And I enjoy listening to it, and getting hard news. However. Oh and this makes me so aggravated. On weekends, they try to protect you from the news, and they go all artsy-entertainy for hours and hours and I could just kill them. Did I already blog about this? Maybe. But Garrison Keiler is not welcome in my house.

My lovely wife informs me that Garrison is in fact welcome in our house. Let me amend my statement to say that he is not welcome in my ears on a weekend, when I want news.

Saturday, October 23, 2004


It's been over nine months since I was diagnosed. I used to be concerned to know when I started to become disabled. I made my lovely wife pledge to tell me when my walk had noticably changed. Well, I can tell you that my walk has changed. And that it doesn't matter any more.

However, I did feel a bit of longing for innocence lost today. My son and I watched a video today with scenes from the summer of 2002. There is one bit where I tie his shoe. It's on tape. My hands just grab the laces and -- zip! These days, that operation would take more time. The good news is that I can still do it. And quite well. Just not as fast.

My left index finger, I notice in the last few weeks, doesn't extend as readily at the other digits on that hand. And so, while I recall starting this blog in December 2003 by typing with thumbs and forefingers as is my habit, these days I type with the middle finger on the left hand instead of the forefinger.

And this is still in the category of not bothering me. I wonder how I will feel when, some day, a disability completely prevents me from doing something I really care about?

Our family just took a walk around the block. Nine months into ALS and I am not only still walking, but walking in what probably looks like a normal way to other people. That's good news and a good trajectory. When I was first diagnosed I was worried about the Brasil Effect (body suddenly turns to jelly). That could anyway happen yet, but not when one extrapolates the current trend.

So I am confident that I will still be walking at my one year diagnosis anniversary, and walking quite well. For a dead man. And that speaks well of how long yours truly will be around. Which I intend to be a very long time. I'll be one of the people taking the first treatments that halt the progress of ALS. Then, I will get me a steel robot body, and come to your house to watch TV and slam a few brews. Ever had a drunk 800-pound robot to deal with?


Friday, October 22, 2004


tomorrow is spoken for
and tomorrow
and tomorrow...

this is the erosion of your days

you are needed and loved

you have a blessed role to play

even if it kills you

it is a small price

Wrote that one last night. Tried to crush the iPod in one hand. Can't. Too well made for that. And you might think from this poem that things are going darkly for me, and I am all down and like that. Not true. I'm the same little sunny optimist thankfulist as usual. But now and then you do have to write a dark poem, and even weep a little. And over what? That damned song on the iPod. Me and this song go way back, see. In the late 1960s when TV was still about entertainment, there was some variety show where this older, puppy-type fella sang the song. Maybe every week? Anyway, more than once. And I was a small boy and stood there riveted, my little heart being torn with love. See, the song is about mother love, your relationship with your mother. And to a small boy nothing is more holy than that. It's so important that you don't even think about it. But here was this song, someone actually singing about it.

Anyway, it's about dying, and meeting again in heaven (if there is one ... hah!) and the damned iPod played it last night as I lay in bed getting ready to sleep. Hence the weeping and the vain attempt to crush the iPod with one hand.

Fortunately, Tom Waits to the rescue. Gun Street Girl. The man is a genius:

He bought a second-hand nova from a cuban chinese
And dyed his hair in the bathroom of a texaco

And then my poem, and everything was all right.

No, I am not depressed. I am, in fact, alive. Everyone has to feel sad every now and then. Don't prescribe seratonin enhancers to me.

Thursday, October 21, 2004

Right on time

Both my kids appear to be coming down with something. Right on time, too, because I feel like I am starting to get over the last one. My coughing is greatly reduced. I even felt well enough to go to the gym yesterday. Inhale volume is 4500 mL. But how long before I wind up back at the doctor with bronchitis again? You might think that you could try to avoid touching your kids when they're sick, but that's not possible. They are a part of you. And, plus, you love 'em so much.

My daughter senses something. She wants to sit on my lap, or wants to be picked up. She follows me around asking me to wipe her nose. I hand her tissues. My wife swoops in and does the wiping. My wife doesn't want me to get sick again either.

Wednesday, October 20, 2004

Moja Vera blogs again

During the Iraq invasion and the war that followed, there was one voice of honesty and sanity that I followed, the blog of Moja Vera. He showed what a thinking, feeling person's reaction to the war was. I sent him fan mail urging him to write a book. Probably one of thousands. He came home, got a cool job, got married ... and stopped blogging. Well, now he's back for a cameo, describing his visit from the one-time Iraqi blogger Salam Pax. It's a pity that neither of these guys are blogging much now. But they were there when we needed them.

Tuesday, October 19, 2004

A New Kind of Terror

We face a new kind of terror. A titanic struggle between good -- And evil. You see, people have got to understand that. Let me refer you to the Bible, where it is written, "Constipation be far worse that diarrhea."

The battle was joined, my friends. And in the end, the forces of good triumphed. But not without great sacrifice, and not without employing every weapon at our disposal.

I think I will become a prune-a-day man, like my grandfather was. Because, make no mistake about it. Evil will attack again. We have to be right 100 percent of the time, and evil only has to be right -- once.

And as I was fighting the battle, I got a couple of cramps in my neck, due to all the straining going on. And I thought: Imagine being someone with ALS, a disease which lets you feel everything and yet not move, and being this constipated. Oh, agony.

So color me prune. Every day.

By the way, I broke the Ibuprophen ban today. I figure, if my abstinence hasn't cured me yet, it never will.

It's cold here today. Hard for the left hand to type.

My son told me last night to go to the doctor for some medicine to make my cough go away.

There is success in babyland. For the third consecutive alternating night, I have put the baby girl to bed. She seems to think I am doing fine. She has bath, then pajamas and stories, then potty time, then stories and songs, brushing teeth, then songs in the dark in the rocking chair, then night-night. I would like to do the potty time either before or after the bath, but she usually wants to do it after I get the diaper and pajamas on her. Oh well. The overall trend is good: My lovely wife and I are each handling one kid each night.

Monday, October 18, 2004

Faster boy

In our house it is possible to walk in a continuous loop from one room to the other. Naturally the walls are at right angles, so it's not a circle, and some sharp turns are required. My son and I have always enjoyed playing chase on this course. I recall, when he was younger and I was less impaired, how easy it was to put on a burst of speed and catch him. And I wondered about when the day might come that he could out-chase me.

Today was that day. The sharp turns required give the advantage to the smaller person. But I used to be able to make that up on the straight parts. These days, my left knee doesn't extend quickly enough for a spint, so I am now unable to make up the difference. I tried my very best to chase him down, but he kept gaining on me. He almost caught me from behind. Part of this, of course, is that he is getting to be almost five and his running is improving.

Part of it is that I have ALS. I wonder if my wife can still catch him. I wonder if I could catch him on a straightaway. I think the answer to that is yes.

We walked to lunch and back, and a hundred yards or so from our house I challenged him to a race. I was able to catch and pass him with ease, several times. Maybe he was not running at his full speed, though.

Saturday, October 16, 2004


Let's say you've got all these poems that you're compiling into a book. You figure, they've all been groomed many times over the years, no need to spell check it. Spell check it anyway. Holy cow! So many mistakes prevented.

I needed to make a note of supplies for my boy's Halloween costume, so I went to a notebook to tear out a page, and found this poem:

The unknown martyrs
known as chumps
outnumber the reverend
stumps of the ones we know

I kinda like that one. It stands the test of time. Which is, several months, maybe a year or two.

Wednesday, October 13, 2004

Lulu book good

The book that I ordered via Barnes & Noble came today, and the paper and cover stock look good, good binding, printing looks good. So I plan to go with them for my poetry collection.

No, the point is not to make money, sell copies, or get recognition. The point is just to archive my stuff in a way that's accessible to me and my kids, and yeah, whatever random person might come across it.

Saddam and the Bear

Saddam held out the pistol to the blond television news reporter. "Here, take this. Will you shoot me with it?"

"Sure thing!" she said, cheerfully, in CJ's voice. He marched in a rapid, portly way out to the garden, and CJ followed him, ditching the pistol under some papers in an open briefcase.

You realize of course that this was just a dream I had last night.

Once outside, Saddam was urging the bear to fight him. Saddam was dressed in this shimmering, absurd dragon costume. The bear quickly knocked him to the ground and put its jaws on his throat. Saddam continued verbally taunting the bear, which then killed him.

In the dream I then shift from the safe television view to being a local, a neighbor who is worried about the bear. No it didn't look like Iraq, it looked more like Hawaii. I spent some time hiding from the bear while trying to keep an eye on it.

Later, quite a bit later, I was watching from a rooftop while the bear marched back towards the former Saddam residence. Behind the bear was her cub. Marching with them was a boy, on a stilt for safety. It was just a piece of two-by-six lumber wrapped in black plastic. I wondered how the boy could make this one piece of wood work as a stilt. But he did. Trailing behind those three, at a safe distance, was a boy carrying provisions for the bears: A human arm wrapped in black plastic.

Monday, October 11, 2004

Internal sunburn sunset

No one ever told me so much stuff could come out of my nose. Yuk!

The internal sunburn effect did not occur today, even though I did not take analgesics. That's a relief. Yesterday I drugged and napped, and got by. Today neither, and still.

The sweet baby girl is on antibiotics now due to her cough. She was very upset at bedtime and I stepped in to relieve the mommy. And, may I just say, when it comes to hard-working dedication to her children, that woman is it. I am amazed at how much frazzling she can take in the course of a single day. But anyway, this time, the girl told me what songs to sing, and when to put her in the crib, and when to pet her back. And when I left the room there was no crying. Yay, Daddy!

So the plan is to do this on alternating nights, the wife and I switching off between the two kids.

My boy reads exceedingly well. Even more so than in the recent bragging I did. There's this story about Amelia Bedelia, and he could read it very well, though neither of us had read it to him before. He did need help with some words, but I was amazed at all the tricky words he didn't need help with.

Saturday, October 09, 2004


This is my fourth day on th antibiotic Zithromax, and the cough and sensation of internal sunburn continue. This Zithromax proudly states that it keep working for five days after you take it. OK but I think that the famed extending effect may come at the price of reduced effectiveness during the first five days.

I usually do all right in the morning. In fact this morning we met at the park in the hills to cheer on my buddy from work who was running a 50-mile race today. I know that sounds insane and impossible. But he has even run a 100-mile race on two occasions. As I said, I do OK in the morning, but around 2 in the afternoon, I feel that pain in my chest to the point where I start taking aspirin, Tylenol, and butterscotch candies in hope of making the sensation stop. Today I took two aspirin, a shower, and an Aleve. The chest doesn't feel perfect, but it feels better than before the drugs and the shower.

My copy of Fahrenheit 9/11 came in the mail a couple of days ago. I have not watched it, though I did view some of the extra scenes.

Any day now we can expect the October surprise. My personal hunch is: Friday October 29th, rumored capture of Osama, White House officials, grinning widely, issue "No comment." Weekend media in a flurry about how they'll need a few days to extract information from Osama, and pursue and leads, so naturally they don't want to warn his subordinates that they have been comprimised. After Bush wins the election, the story dies.

Or maybe there won't be an October surprise. OK, well, actually that's the least likely thing. Karl will think of something.

Or maybe, how's this, the surprise is sprung, but like so many other attempts at cleverness the White House makes, it falls flat. Like Cheney's claiming not to have met Edwards before the debate. Or his debacle. Those were both calculated, planned attempts to be devastating, and look how well they worked. Look at the success in Iraq. So maybe the October surprise will be equally feeble.

Thursday, October 07, 2004


So I have been intrigued by the concept of Print On Demand (POD) publishing for several years now. And with my new death sentence, I thought it might be useful to archive some of my writing into a POD site so that it would be accessible to my friends and family who might want to read my stuff in future years. And to anyone else, for that matter.

I also want to scout it out so that my buddy Thrill can put his greatest novel up there, put all his novels up there, and make them easier for people to buy.

I thought that my collected poems would be the best place to start.

I have found this place called Lulu which looks ideal to me at the moment. But if any of you have warnings or just get a bad smell from it, let me know. They say it's free to put your book on their server, but the ISBN service that gets you listed on Amazon and Barnes and Noble costs $149. Which sounds good to me. They also make their money by taking 20% of your sales. For most people that means you and your mom ordering copies. That's a business. It's vanity publishing, but without the embarassing box of books in your basement. And if you have ever had a book contract (and I once did) you know that keeping 80% of sales is phenomenal. Normally you'd be lucky to get an agreement for 6% of net, and that's before all the lying and dancing start.

My criteria were, (by weight):

50 Sales through Barnes and Noble
30 Quality book format
15 Reasonable cost
5 As little jocular conversation with the publisher as possible

To test the first criterion, I searched the Lulu site for titles with the string 'brain.' I got a bunch of hits. So then I chose three pretty much at random and tried to find those titles at Barnes and Noble. All three showed up.

Regarding the quality of the book format, I guess I will just have to order one of their existing titles and have a look.

The cost is very reasonable.

It looks like I can largely manage the process myself, without talking to anyone, even regarding the cover photo.

"We have the ability to do no-touch publishing, where the text goes from author to printer to customer without any intervention," said Young, who previously founded the open-source software company Red Hat.

The company now has more than 12,500 book titles in print, and adds an average of 50 new titles a day.

Apparently, they even accept dirty books. Though my poems are mostly about flowers and other nice things.

OK, I've ordered this one via Barnes and Noble. Largely because the author doesn't seem like a complete illiterate. Or a Christian.

The coughing and burning lungs had me so spanked I was barely human yesterday afternoon and evening. I took the antibiotics at 3 PM. Around bedtime I noticed that my breathing was improved, very dicey still, but a creeping sense of reliability. I slept on the couch, in one position, without moving, for fear moving would make me cough, until about 2:30 AM. Then I woke up with my back hurting, and crawled into bed with MLW. Got a few more hours of sleep.

This morning there is some bouts of coughing, but the burning feeling is gone. I may have turned the corner.

My blood pressure yesterday was 130/80, which is up from the last two times. I assume my system was stressed by all the coughing, but this is still within the normal range. According to the Wikipedia:

Normal ranges for blood pressure in adult humans are:
Systolic 90 to 135 mmHg (12 to 18 kPa)
Diastolic 50 to 90 mmHg (7 to 12 kPa)

By the way, I have been using that "Next Blog" button that Blogger has put in the header, flipping through other peoples' blogs. I have to say, I am not impressed. Among the English speakers, my impression is that 90% are in high school, 45% of the rest cannot spell, or type, and once you sort through the Christians, 28-year-old clean-shaven guys who want to tell you that they like beer, softball teams, and attempts to sell things, you are left with very few interesting blogs.

I'm not sure mine is one of them. But it suits my purposes.

Last night at dinner, to avoid coughing, I kept mute. I wrote notes to my lovely wife. When she went upstairs to bathe the girl, my son started acting out with me. I didn't need that. So I wrote him a note:


I was surprised that he read it out loud. So then I wrote:


And he read that correctly too. Later I wrote:


And he got it. Still later I wrote:


And he got that too. However, he had trouble reading PAJAMAS.

Wednesday, October 06, 2004


I got up this early once to go fishing with my uncle. Other than that... Actually, I hope I'm not 'up.' The idea is to do something tiring, that will make me grateful to lie down again in a few. My wife brought me some children's Dimetapp, and some cough medicine. I took some Dimetapp. But I don't like cough medicine. It doesn't work, and it makes me feel bad.

I've moved to the couch tonight so that my coughing does not keep MLW awake.
We watched the veep debate. My scoring: Draw.

Hey, I wonder what my chess game is like at 4:44 AM?

Then call out the iPod. Annie Lennox and Bonnie Riatt.

7:20 AM: Well, I never did get back to sleep. But I got this poem out of it:

the light comes up on this new day
if you've seen it before you'll see it this way
one black duck
very high, wing points rapid
against pink sky
coastal sheets, then these turn white

get up
it's time for your pills

3:16 PM: MLW said I should call the GP, and I got a same-day appoinment with the nurse practitioner, who listened to my lungs, said I have bronchitis, and prescribed Zithromax. And gave me a flu shot. Yeah. I know the flu shot is in short supply, but am a priority patient, due to the ALS. Respiratory failure is the leading mode of death or those with ALS. This cough is making me feel pretty bad. Go, drugs, go!

Tuesday, October 05, 2004

Yet another cold...

My angel daughter has had a runny nose for several days now, seems like a week, not sure. She and I have both been using lots of Kleenex for several days. Ask her if she needs and Kleenex and she will tell you the truth, accept the tissue, and sniffle her own nose with it. My son refuses Kleenex as if it were an insult. Anyway, last night before dinner, yours truly felt the sinus floor swelling, the sense of being too hot. Took a shower. Slept next to my lovely wife. Woke up with a full cold. In addition to the redominant hacking cough.

So far MLW isn't sick. Good. She is taking the kids to the pediatrician for flu shots this morning. I'll get mine from my GP soon.

Yesterday I checked the fluids in my car for, I think, the first time since I was diagnosed, Good thing too, because it needed coolant, oil, brake fluid and, oh, wiper fluid. I'm guessing on the oil because, like my odometer, my dipstick is broken. I mean, it's not visibly bent or anything, but it just collects oil up above the mark lines and none below. I guess I could buy a new dipstick.

I checked the fluids in the family car before we went to Crater Lake.

The new washing machine continues to be a star, but the dishwasher, going on two years old this month, is a disappointment. It leaves bits of food on everything. Like for example, diced rice. Or, for example, a small plastic cup with yogurt lining it comes out at the end of the wash with yogurt still lining it. So you have to pre-rinse by hand. It seems to be draining fine, and the hose issue has been investigated. I just think that, even though it is a Maytag, we got a lemon. I wonder if it is still under warranty.

Operation Baby Doll was a success. Phew! The story goes like this: I went for a walk a few days ago with my angel daughter. She was pushing the plastic baby doll stroller with the aforesaid plastic baby doll recumbent within. When she got tired underneath the train platform, I picked her up and carried her home, dangling the stroller from one hand. Well, along the way somewhere, Baby Doll fell out, and we didn't notice till hours later. Search parties went out. All we found were the blanket, and the tiny red jumpsuit Baby Doll wore.

I thought our daughter would freak. You lost my baby! But apparently she thinks of it more as a toy than as a real baby. She did, however, ask several times a day about Baby Doll. I told her that I had lost Baby Doll and some other little girl was taking care of Baby Doll now. And I was very sorry, I said, but I promised her I would get her a new Baby Doll. I went shopping for a couple of days, trying to find a replacement. You wouldn't believe the collection of huge, misshapen, tiny, cloth, or otherwise non-matching baby dolls in the stores, and on eBay. The manufacturer only sells wholesale. Target failed me. The local stores too, until, this one store had a baby doll about the right size and construction. I tore off the frikken Christening headband and tiny white gown, and chucked them in the trash with the tiny baby bottle and toy potty. Then I coughed phlegm on top of that, wrapped up the trash, and put it in the garbage, which the waste collection people promptly took away. And I waited...

...When my daughter came home from the park I showed her New Baby Doll, dressed in the old familiar red jumpsuit, and asked her if she wanted New Baby Doll. To my immense relief, New Baby Doll was accepted. There was some hugging and stroller pushing. Phew! And her opinion on this issue is all that matters to me.

Monday, October 04, 2004


Congratulations to the SpaceShipOne team, and this blog is now accepting dontions towards my $200,000 ticket on the Virgin Galactic spaceline.

Click it.

Sunday, October 03, 2004

Normal runner

Good news: I just went for a very short jog, and my gait may not be normal, but it would pass for normal to an observer, and it was not nearly so messed up as it was two day ago. We live on a block that it about two city blocks long, and I walked to one end and jogged all the way back. Then I jogged back half way again. Not wanting to press my good luck, I called it a day.

I don't know how to account my for my hobbling to day ago, other than that it was such a cold day, that I had not run in several weeks, and that I had been sitting all day and did not warm up.


My cough is flaring up again, but not in a savage way, and my inhalation score is back down to 4600 mL.

I am on the priority list for flu shots, so when I go to the doctor for that, I'll have him look at my lungs again.

Saturday, October 02, 2004


So then I had the spontaneous chance to run half a block today, and my stride seemed fine, or at least, much like it was before yesterday's hobbling. A few minutes later I again ran for a bit, and the stride still seemed OK.

Only difference I can maybe think of is that it wasn't as cold, and I had been walking around with my son.

Go figure. Not sure what is going on. But you can bet I plan to re-test tomorrow.

Friday, October 01, 2004


John's email about workouts reminded me that I need to resume jogging, and go to the gym more. Well today I went running for the first time in weeks, and for the first time in my running life, I ran like a disabled person. What I mean is that, if you had seen me, you would have noticed this gimpy action as I ran.

The reason is that after I push off with the left leg, and bring it forward, the bent knee just does not relax and release down to let me land on the left foot in time. So it is still partly bent, and my frame gimps as it tries to compensate.

Ever in denial, though, I have two thoughts. One is that it has been a long time since I ran, and so I may be able to work my way out of this. The other is that if I do warm-up exercises before I run, the muscles in the left leg may be able to "let go" more readily.

Of course, the standard analysis would be that the nerve signals for letting go are just not getting to the leg muscles. Well, to counter that, I say that my hunch is that the nerve pathways for running are in some large part reflexive, between the leg and the spine, even though running itself is a function of the voluntary motor nerves. So if I get my muscles warmed up, and get back into running more regularly, I may be able to compensate for this problem.

I've often wondered what it would be like to be disabled. Just the other day I was thinking that, although I have some physical problems, like the slow and weak limbs, I'm not disabled yet -- because I can still do everything I want to do.

Well today I wanted to go running, and I couldn't quite do that. Disabled? I guess.

It's a hard thing for my spirit to adjust to, because, in my mind, I'm still that guy who can run 10 miles in the hills. I still think of myself that way.

And except for the fact that my body won't let me ... I still am.

While the kids were napping, my wife and I cried together a little, which made things feel better.

After changing the wet sheets on my boy's bed upstairs, and relapsing into being sad about the running results, I was able to punch the Winnie the Pooh hanging from the ceiling three times in rapid succession with the right hand.

The kids were downstairs making art.

I came downstairs and tested my inhaled volume: 4900 mL on the first try. Improving.

In the back yard around sunset, the kids were planting with my wife, and I touched the sun-warmed stucco walls which I put up myself in 2001. They're something of an emotional touchstone for me, since I was strong then, and pushed my body like a thing on weekend and evenings, to finish the job, knowing that my body would heal and the aches would be temporary.

Two walls meet at a 45-degree angle. I wedged my nose into the nicely-made corner until my cheekbones came to rest, one on each wall. I put my palms on the walls too. The warmth of the house bathed my face.

It's a subjective thing, like always, but it seems like I've been having more fasciculations lately, since getting over the cough (though I still wheeze sometimes when talking, and even cough sometimes). It's weird, feeling fasciculations on your face, most strange of all, on the bridge of your nose. Barbara Eden. At night when you put your ear on the pillow, you can hear the tiny muscles in your face twitching invisibly. For best metaphoric shock I could say it's like listening to a seismograph, or a telegraph. But mostly it's fainter, and faster, than both. It's like listening to electricity, more precisely, listening to an EMG.

And then, if you know how to relax and truly not worry about anything, the sound stops.
The first debate

My lovely wife and I went to a neighbor's house to watch the first presidential debate between Bush and Kerry. It seemed clear to us that Kerry won the debate, and would be a better president. The president's excuses, empty slogans and trick attempts to miscast what Kerry stands for seemed weaker each time he repeated them.

And the polls the next day confirm our impression, with Gallup finding 53% believing Kerry won versus 37% for Bush. Let's hope that carries over to the ballot box.

At least one translatlantic friend has sadly said that Bush will win in 2004. But don't count out the erratic wisdom American people just yet.
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