Tuesday, May 31, 2005

Convincing other people to make art for you

This is really cool: invite people to send you a 4 x 6 card containing a "confession," then post the responses on a blog. People invest lots of time making art that they give to you for free. It's not all good art: lots of it sports a coffeeshoppy hipster graphic theme, and lots of the text is 10% confession and 90% punch line. Still and all, this is pretty much the essence of the modern blog: a stage-whisper.

(as seen in the New York Times)

Thursday, May 26, 2005

Stem Cells, America, and Me

Just a few years ago, Michigan State University scientist Jose Cibelli was considered the leading expert on cloning human embryos to treat and study disease. Now, there's no debate that the cloning king is Hwang Woo-suk of Seoul National University. (Paul Elias, AP)

In a recent NYT column, Tom Friedman argued that big business has been MIA on many current policy issues that are likely to have a profound impact on the future of the American economy. Friedman thinks business ought to be out front on issues like energy policy and the deficit, because it's in business's self-interest to do so. The problem is that American business tilts toward cultural conservatism, and has been able to preserve the bottom line by exploiting international markets.

I'll add an item to Friedman's list of issues on which American business ought to be standing up to the current administration: stem cell research. This area holds untold potential not only for improving health, but also for improving this country's economic competitiveness. I'll acknowledge my obvious bias on the issue: stem cell research may hold promise for the treatment of multiple sclerosis. But the full potential of stem cell treatment--both medical and economic--will never be known unless the feds open the wallet for research beyond the existing lines of embryonic stem cells. More generally, the administration and the far right have created a climate that discourages private investments in stem cell research.

Deep down, I'm pretty sure that I won't be a beneficiary of any stem-cell therapies developed for MS. Although I've benefitted from recent therapeutic advances, I'm 34 and have had the disease for upwards of 12 years now; MS damage in my brain and spinal cord has resulted in problems elsewhere in my body. But I'd like to see a day when MS is curable, and not just manageable.

Wednesday, May 25, 2005

Emotionally labile?

I don't think it's terribly common, but one symptom of MS is a tendency to exaggerated emotional response. For instance, extreme sadness provoked by something that only moderately sad (losing your keys, say), or unhinged laughter at something that's only moderately funny (Billy Crystal, say). There are different degrees to the phenomenon; at the extreme end is something called pseudobulbar effect, where the emotional response may bear no relationship to external events or the patient's real feelings.

Today, on my way back to work after visiting my podiatrist (I've got flat feet, probably secondary to MS, which has affected my balance), I was listening to Caetano Veloso on my iPod. On his album, A Foreign Sound, he covers a bunch of songs in English, including Dylan's "It's Alright Ma" and Nirvana's "Come As You Are." It's uneven, but has some gems.

Driving back to the office, "Something Good" came on. At the time, I recognized the song, but couldn't place it. (It's from The Sound of Music.) The lyrics are terribly sappy, of course. Without quoting them, the message is basically, "I was never a great guy, but at some point in my life, I must have done something good, because there's this other person who is fabulous and who loves me." I found myself crying at a stop light.

Later, I was perusing boingboing, which had a link to these hilarious fake romance novel covers. Sitting at my desk in my office, laughing so hard that stuff came out of my nose.

Is "Something Good" that good? Is "The Blind and Buttonless Horseman" that funny?

Tuesday, May 24, 2005


Here's something weird: I was recently seated, in a very dignified fashion, in the men's room at my office, when suddenly the elevation of my, uh, chair increased by a quarter-inch or so. Clearly, this happened because a coworker of mine, presumably female, had, at that moment and also in a very dignified fashion, seated herself in the ladies' room next door.

I'm sure there's a plumbing-related explanation, but it reminded me of the scene in Terry Gilliam's Brazil where Jonathan Pryce's character fights with his coworker next door for a piece of the desk they share.

(I was maybe thirteen sixteen when I first saw that movie, played on the enormous first-generation VCR our family had in the basement. God, that takes me back.)

My new mower

My wife Caryn and I have been homeowners for a little while. Back at our first house, we had a self-propelled gas mower, which was loud and dirty but did the job. When we moved out, I sold that mower to my dad (who owns, incidentally, a startling number of things that run on internal combustion engines: two cars, two motorcycles, a mower for his house, a mower for the cabin, a gas weedwhacker, a chainsaw, a generator, a snowblower, two boat motors, etc.).

At our present location, we decided to try the old-fashioned push mower. It sounded like a good idea, we being inclined to that which is quieter and cleaner. But it takes quite a lot of effort to mow our smallish suburban lot, especially with the slope at the edge of our back yard. And in the heat of August, I just couldn't do it. Like lots of people with MS, my symptoms get worse when my body gets overheated. As a result, Caryn became our family's designated mower. Which was problematic, because it turned out that I cared more about the appearance of our lawn than she did. Which is not to say that I am obsessed with it (in my view). But the thing is that the push mower never produced a manicured lawn to begin with, and when the grass got too long, the mower just wouldn't cut it at all, just bend it over. So, something to fight about.

In the interest of family harmony, this spring, I sprang for an electric mower, which is sorta quiet, and pretty damn clean, and actually cuts grass. This mower, though, requires that you remain attached to the grib while mowing, which is clumsy, even though the mower's handle flips over so that you can keep the cord dangling on the side you're mowing away from. Worse, apparently I now lack the stamina to do the whole back yard. About 80% of the way through, I was unable to walk further, notwithstanding the fact that a lawn mower bears some resemblance to my grandmother's walker.

Bummer. Family harmony remains in jeopardy. The back yard's not done, and this morning, I'm sore and tired. Which makes me cranky. Which is a further threat to family harmony.

Saturday, May 21, 2005

Not so much fun

I spent the afternoon out on the lake in my crappy little fishing boat, and now I am exhausted. Too much stand-up-sit-down and anchor-weighing, and then the walk uphill back to the car. Even though it is my second-favorite recreation activity (git yer mind out of the gutter--the top of the list is paddling a canoe down a river too shallow for motorized traffic), it sure seemed like a chore today.

I'm starting to think I should have an even smaller, lighter boat, and probably a fishing buddy to keep tabs on me. Of the people in circle of friends and acquaintances, seems like all the likely candidates are either busy daddying or still goofing around like they're 23. Dude, I think 23 was great, but I'm starting to lose my hair, I'm having trouble holding any quantity of beer, and did I mention that my immune system is fighting with my nervous system?

Maybe it's just because I didn't catch any thing but a slight sunburn.

Friday, May 20, 2005

Worm eggs: possible MS treatment?

My neurologist is conducting research to determine whether ingesting pig whipworm eggs can reduce the brain lesions that are evidence of MS demyelination. Don't laugh; it apparently works for inflammatory bowel disease.
After the innocuous eggs are ingested in a sports drink, they hatch into larvae. When they reach the large intestine, the larvae interact with the immune system and are then killed. This interaction may have a positive impact on immune responses. Dr. Fleming’s team is using MRI and other testing protocols over ten months of treatment to determine whether participants show any signs of benefit.

Bank fees

For the last 6 months or so, I've been making payments on my US Bank-issued REI MasterCard account over the phone using their bot. It's worked well, and cut down on the time it takes to get through a call to customer service. Plus, the bot's voice sounds like that moderately-pierced barista with the fabulous smile who made you a perfect latte this morning. Today, she informed me in a friendly way that next month she'll be charging me $10 to make payment by phone (same charge for a phone payment through a human).

It's the same old crap: as with the ATM, the bank will be charging you to take advantage of technology that is drastically cutting the cost of providing services to you.


Since I developed multiple sclerosis about 12 years ago, my wife has encourage me from time to time to keep a journal of how I've been feeling. The idea is that it would help me to keep track of emerging and abateing symptoms, which is sort of a hallmark of MS. I've moved around a lot since my diagnosis, meaning lots of new neurologists and other health professionals. At the first visit to a new doc, I'm always asked to give a little oral history of my illness, and it's gotten difficult to remember exactly when it was that I started to experience a symptom. When was it that I first had trouble walking, trouble remembering, trouble peeing, etc.?

I really wasn't interested in sitting down with a moleskine on a daily basis to record a clinical description of how things were going. I'm hoping a blog will be fun substitute. Here we go.

The most recent reminder of the usefulness of keeping track of MS-related stuff isn't a change to a new doc. Instead, it's a new symptom. I think my gut is on the fritz. I can't go number two. Now, I swear this blog won't turn into a BM chart, but this issue is a good example of my changing relationship to my body. Increasingly, I think about my body less as "me" and more as a vehicle that shuttles "me" around. I put up with the oogey indignities of life with MS the way you might tolerate the squeeks and rattles from your '82 Accord. MS probably isn't unique among other chronic illnesses in this respect.

Ten years ago, before MS permeated my daily life, I would have been seriously embarassed if I'd had to call a nurse and talk about when I last went number two. But I think the worse my MS gets, the less this stuff seems to matter. Even though it's come at a pretty hefty cost, that process has been one of the positive things of this disease for me. That's one of the things I want to poke at in this blog.