I haven't received any death threats for not updating the blog for two months, but I fear being pelted with rocks and garbage. So here goes.

A lot has been happening. Firstly, the kids are out of school (and Linda, too!) for summer. Today (Wednesday, 25 May) was their last day. Those lazy, hazy, crazy days of summer are upon us. The increased house traffic will take some getting used to, but its all good. We will probably do some summer vacationing in the form of day trips...

...in our NEW VAN! That's right, a Plymouth Grand Voyager in spectacular condition, complete with wheelchair lift and wheelchair mounting hardware. It is a godsend. We've used it once so far, and it was very encouraging how easy the whole trip was.

In other news, Hannah is 9 (as of yesterday), Ryan and Pat "graduated" from preschool, and received lunchboxes from the teachers, and Cole is studying to test out of 6th grade and go straight to 7th. Linda is still busy lining up summer activities for the kids; it seems like she's traded out one full plate for another, but hopefully she'll get some time to relax this summer.

I am still playing with the band (the "Joe Rank Experience" -- not my idea :P) and we've added a sax player. He's older than all of us, and man, can he play. It's been like pouring Tabasco sauce all over our sound. And he couldn't have come in at a better time, because I am struggling to figure out ways to sound good given the reluctance of my fingers and hands to play what I tell them to play. It is like a puzzle, trying to a) save strength to play for 2 hours, b) sound good, and c) enjoy myself. The last one of those considerations is probably what will suspend my playing. When it becomes a fight that I lose every time I sit down to play, it will become a source of frustration rather than a source of satisfaction. I'm not looking forward to that day, but I sense it approaching.

My speech is pretty much incomprehensible to everyone but Linda. Its only slipped a little bit, but that little bit seems to have crossed some unmarked threshold where now people just don't have a chance of understanding me. I've been using my speech synthesizer a lot more, and, ironically, people sometimes have to look at what I wrote on the computer screen because the computer voice can be hard to understand. My walking is a risky propostition at best. I am quite wobbly, and have had two falls in the past three months. I like to walk with my walker, but the wheelchair is safer and often more expeditious. I play my keyboard from the wheelchair. And I'm talking about the manual wheelchair, not the electric. My hands have lost a lot of muscle mass, as have my legs. From my knees to my ankles is just ravaged. And I have to be careful when put weight on my hands. There's very little muscle padding the bones, and I've hurt myself by putting weight on things like stairway banisters and arms of chairs. My breathing is getting worse, too. I come out of the shower really tired, and some of it is because I've been struggling to get enough air in the steamy environment. But the news is not all bad -- I've skipped my seasonal allergy suffering this year, probably because I've been outside so little. And I seem to have more energy during the day; I'm writing out charts for the band and working on (shhhh!) a short story.

And, I still plan to outlive this disease, so the rapid advances in gene therapy and stem cell research keep my spirits bouyant. It looks like medical science may come through for me after all, all I have to do is be patient.

Patience. What a critical virtue for surviving this disease. Patience with other people who treat you inappropriately ("Lady, I'm speech-impaired, not retarded..."), patience with the doctors and insurance companies, and mostly, patience with myself. This disease demands that you do things more slowly. Everything. Walking, eating, speaking, getting dressed... Everything. If you aren't patient, you will suffer a lot more. It may take three of four minutes to open a bottle of aspirin. If you can't be patient and see the task through, you emerge from that little "trial" as a frustrated loser with a headache. Of course, there will be a time when I can no longer open an aspirin bottle, but then I'll just have to be patient until I can get my need met another way. That's the other crucial quality that makes the disease a lot easier -- resourcefulness. Finding words that you can pronounce (and still get across your meaning), finding temporary tools to open containers, finding things to lean on, finding ways to sound good while playing a minimun of notes, etc. The more ways you can find to do things, the less you'll have to give up.

Well, hopefully I've atoned for my prolonged hiatus...and hopefully it won't be two months before I post again. Till then, keep the faith.

Replies: 6 comments

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Posted by filmy porno @ 08/24/2005 09:09 PM CST

Joe, I'm glad to hear that you're still making music... but if I ever hear you've given up fishing, I'll have to haul your a## up to Michigan and hook you into a 12-lb steelhead myself! Don't make me come down there... ; )

Posted by John Christensen @ 06/07/2005 01:28 PM CST

Joe - I've passed up a LOT of good opportunities to tell you just how damn courageous you are. Granted, my strategy for dealing with life's difficulties is to blatantly ignore them... It's a tremendous honor to be playing in JRE - those moments when we're all grooving and smiling are just priceless.

Posted by Nate @ 05/26/2005 10:42 PM CST