RankFamily Archives: May 2004
Linda and I just returned from seeing Dianne Reeves sing. She won her third Grammy® for best jazz vocal album in 2003, having won the same award in 2000 and 2001. The experience was world-shaking for me. I wept like a schoolgirl through half the tunes. Pseudobulbar effect had a lot to do with my public display of emotion, but the motivation was undeniably the overwhelming beauty of the music we heard. Being in the presence of a true master of some discipline practicing their craft, a discipline that's meaningful to you, is a powerful experience. I have so many feelings running through me after hearing her sing. It was humbling, inspiring, intensely satisfying, educational, entertaining...I could go on. The trio she had backing her up were all monster players, but the real trick was they never stepped on Dianne (or each other), and yet they provided so much; they played so much. It was obvious that they'd all been playing together for quite a while, but even that can't approach the vibe that was happening on stage. I could focus in on the piano–meticulously scrutinize would be more accurate–and there was nothing out of place. He wasn't over-playing, under-playing, his time was right on, his ideas were tasty...just nothing out of place. Same for the bass and drums. But the real maghilla was Dianne. I took what she was doing and put it under my musical microscope, and kept increasing the power. 10x, 100x, 10000x. Everything I heard her do was clean right down to the atomic level. Every syllable, every pitch, every syncopation, every embellishment. And the soul...it's like she had a spigot that she could open at will. No, don't imagine a spigot. Imagine a floodgate. But with all this soul, the trio behind her, the range of a coluratura, the chops, and personality to burn, she kept all these balls in the air effortlessly, using each in just the right measure at exactly the right time. You see someone do that and it just bonks you on the head. The beauty, the precision, the sheer mastery of it. I sat there sniffling and wiping tears off my cheeks not wanting it to end, but wondering how much more I could take. It was almost like I was afraid that she would crack a note, or miss an entrance, or in some other way shatter this superhuman image I had built up around her over the course of the evening. She never did. I wish there was some way to transmit the experience I had tonight to others. I am sure the world would be a better place if everyone could get to where I travelled tonight.
In more newsy news, I have a clinic coming up in Houston on June 4th. I am ready for it. My speaking and chewing have fallen off a bit, but my swallowing seems to have frozen, if not gotten a little better. I have noticed (or imagined) slight improvements in several muscle groups over the course of the illness, only to lose the "gains", and more, later on. The cause may be what neurologists call "sprouting". Remaining neurons grow out to try to compensate for dead ones. But then the new growth motor neurons eventually die, too. Or, maybe not. There have been cases in which disease progression just stops, for some unknown reason. That's the flavor I want, please. And you can make with the stopping, already. My left ankle is showing a slightly decreased range of motion, and is probably losing strength. I can't stand on my tip-toes anymore, and it takes me a little longer to get off the floor. In fact, I'm slower all around, and more tired to boot. My balance is becoming an issue, as well. However, I remain convinced that an effective therapy, and a cure, will be found within my lifetime. I just have to be patient, and live as well as I can with the time I have left, however long that is. I can't let my life be galumphing from one distraction to another. No one can. Everyone needs to feed their soul, work on their passion, and encourage others to do the same. I need to write some fiction, play some music, give my wife and kids as much as I can, and stay healthy till medical science busts a move on ALS. Oh, and I've also gotta listen to some Dianne Reeves, and I suggest you do the same.
Posted by joe @ 12:33 AM CST
As Sonny Bono once whined, the beat goes on. Friday saw Linda's prognostication borne out with respect to the Windstar. That's the 1998 Ford Windstar, the minivan that is "her ride". We were all driving south on MOPAC, and it hiccupped a couple of times on a hill. We turned into a parking lot, and it decided to take a giant...er, rest. Cole and I got out and started pushing, above Linda's protestations, but we were blocking traffic in the parking lot. Soon two adult males without ALS pitched in and the car started moving. As the four of us were pusing it into the parking place, the car moved too fast and I couldn't keep up. I ended up kind of flopping off the back fender onto my duff (by way of my knees). When one of the Samaritans came over and asked if I was OK, the correct answer was probably, "Well, yes and no". But I just fired off a "fine, thanks" and avoided the sharing and communication that was the least I could've offered in return for the help with the car. So what's wrong with the auto, you ask? I think it's the transmission, owing to the fact that the engine was still running without any sign of trouble, but the power to the wheels had gone down for a long dirt nap. Hopefully, we're in for a protracted diagnostic period, followed by a sanity-draining estimate to give this old cat its eleventh or twelfth life (I've lost count). I am exagerrating, to be sure. Niether of our current Fords have given us anywhere near the amount of trouble our previous Chevys have.
But that's an interesting thing I've noticed (referencing the hyperbole, not the car makes). People tend to take their own problems—of whatever scale—and spin them into their own little catharses (the way I did above). Every time I see a commercial for hair plugs, hair transplantation, or other "hair science", I wonder if a cure for ALS (or cancer, or AIDS, etc.) would've been found already if all the money that had been devoted to hair restoration had been used instead for medical research. To a bald guy in otherwise good health, his biggest problem is his hair loss. Yeah, he might donate to some charities or funds, but he's saving up to go long on the hair thing. Millions upon millions of dollars spent on vanity. But again, if that's your biggest problem, then why not spend your hard-earned wad on self-beautification?
(Pregnant pause)
Of course, this smacks of disconnection and over-simplification even to me. I've got a loving wife and four kids. Lonely is a feeling I have all but forgotten. And if Johnny Singleguy thinks his shiny pate is holding him back from getting into the game, I'd be the first to say he should do something about it. And not everyone who enters medical school is suited to be an ALS researcher. Some dreams only go as far as the liposuction wand, the "revolutionary new formula", or the money back guarantee. It's disingenuous of me to condemn any niche of our Western medical industrial complex. I sometimes wish my top priority were everyone else's top priority, i.e., curing this #$@! disease called ALS, but I think the world would be a much less fun and interesting place to live if it were.
Posted by joe @ 11:41 PM CST