RankFamily Archives: November 2003
I'm back home from fantastically productive musical weekend in Dallas. I stayed with Derek and Ellen Zock Friday and Saturday night. Derek was the drummer in my band of 15 years ago, The Movies. For some years, he's been (successfully) inciting me to tape my songs on the off chance that someday we'd do something with them. A couple of months ago, he and Ellen came down to visit and he unveiled three of my tunes that he had produced in his handcrafted digital studio. He'd furnished drum parts, he'd had guest musicians come in to lay vocals and guitar tracks, and even tapped the old Movies bass player (Opie Odom) to lay some bass tracks. That spark (or, rather, burning torch) lit off a powder keg of enthusiasms (DeNiro: "...en-duzi-azms, ...en-duzi-azms...") that led to this past weekend and three more tunes. Now the project definitely has a life of its own. We'll work on these three, polish the first three, and lay down some more around the first of the year. When the whole project is done, I'll probably encode the tunes as mp3's and make them available on the website.
Anyhoots, the trepidation I mentioned in my earlier post about old friends' first encounters with my condition was never borne out either way. The former band mates (Opie, and Dave Patton, guitar) never made it to the studio. Although, as social convection circulated me amoungst the Zocks' circle of friends, I did see several folks whom I hadn't seen since before my diagnosis. Derek and Ellen are solid people, and they have pretty solid friends, so, in retrospect, I should have expected no hassles. (Not that I did, but...) I'm sure everyone had been apprised of my situation beforehand, but I'm not sure even that can prepare someone to try to have a conversation with me. Anyway, every interpersonal interaction I had went just the way I had hoped. No one doted on me. But no one was insensitive, either. I sputtered on some water, and I was asked if I was okay without anyone jumping into the Heimlich position behind me. Basically, Derek and Ellen helped me construct my optimal physical and emotional operating environment: only give the disease what it demands (in terms of attention or behavior modification), and otherwise business as usual.
One of my fears is having to someday say (perhaps not is so many words): "I'm crippled, not retarded". I.e., only the interface is changing, the contents of the package are the same. I am reassured every time I visit the Zocks that I'll never have to say that to them. That kind of brings them into a special circle of people who I feel like I'm carrying along with me as I go through this disease. People who can deal with the loss and devastation that this disease promises its victims and those close to them. People who won't give up on the me that they know and care about to avoid the ugliness of (or the work of having to deal with) my shrinking ability to communicate. I wish all my friends were like that. I'm thankful that some are.
Thanksgiving is breathing in our faces. My in-laws are coming into town. In some ways, I feel so disconnected from them that I don't have strong feelings one way or the other about their visit. I expect it'll be moderately uncomfortable for all involved, but that's the beauty of pessimism, no? Set expectations low, and they run a much higher chance of being exceeded. I'll make a full report when the in-house population returns to normal.
Posted by joe @ 05:25 PM CST
Well, things have been popping right along this week. We had the whole family up to work on household related projects last weekend, which was quite a boon. Carpet was torn out, repairs were made, and plans were laid to modify the shower in the master bathroom to make it handicap accessible. Then on Monday, did a lot of work on the home computer, updating programs, installing security patches, and reclaiming drive space. I also scheduled a visit to my doctor's office to get a flu shot, which I received on Tuesday. Cole was home sick on Monday and Tuesday, and Linda was home sick on Tuesday and Wednesday, so I've been trying to stay out of the way of any airborne contagions.
This weekend, I'm going to Dallas to record some music with one or maybe more of my old band members. I am feeling some trepidation about the visit, because only one of my former band mates has seen me since I got sick. I could be more sensitive than usual to reactions of people, especially old friends, who are experiencing the "shock" of dealing with my illness for the first time. That notwithstanding, the impact that my diminshed communication abilities, in particular, has on a person is usually eminently apparent on their face. I also readily percieve an intense predilection on their part for me to establish how we're going to deal with my handicap. Do we politely ignore it? Do we go to any length to avoid mentioning it? They're looking to me to set the standard for how to navigate around this giant obstacle. And, to be honest, I'm still figuring out how to do this. Most of my close friends know that it's in my nature to find humor in anything (and my disease is no exception), so I've made the occasional joke about myself or my predicament. These usually go over like lead balloons. I have a couple of friends that are with that program, but even some family members get uncomfortable when I crack wise about my condition. I sure don't want to ignore it, or pretend that it is not a big part of my "user interface". I want to find ways to effectively deal with it, thereby minimizing the impact it has on the rest of who I am. Of course, part of of who I am is the sicko who finds the occasional comedic nugget embedded in the otherwise dreary landscape of living with ALS. So, if you're one of the ones who wishes I'd lay of the jokes, steel yourself for more of the same. And if you're curious about how I want to accommodate my limitations, think of it in a context that wouldn't admit any embarrassment for any of the people involved, like talking to someone through a closed car window. Don't abandon all hope of communication and give up (please!). Don't pretend that you can hear the person just fine when you can't. Ask the person to repeat, as needed, but you do your share, too, and listen closely. If things are just not working, tell the person inside the car you're not understanding. If the person in the car is resourceful and committed to the conversation, they'll work with you until they find a way to communicate through the barrier. It may not be as clear or as efficient as it would be if the window were rolled down, but for those of us who got stuck with defective window controllers, it'll have to do.
Posted by joe @ 10:45 PM CST
Thanks to everyone who helped get so much done this week end. I have always liked the no carpet look so I like the bedroom without the carpet. The bathroom is coming along and the garage remodeling is simply marvelous! Thank you all for being patient with me. For some reason, the superficial changes we make on the house seem representative of other changes happening to Joe that we have no control over. It was hard to see the work finally happpening. I had no idea that it was going to make me feel low to start the work on the house. I am glad it's getting done, however. Boy do I feel like I am on an emotional rollercoaster sometimes! I asked Joe if these household changes bother him and he said they did not.
Patrick is a little bent out of shape that the front door is not put back together (he only mentions it every time we open the door) I guess some things are really important to little kids.
I thought the house full of children went remarkably well this weekend. I sure love my nephews. John Austin is so handsome and Jake is cute as can be. Baby Joseph must take after both of them because he is pretty darn good looking too. Joe and I were amazed at how happy Joseph is. All four of our kids were very impressed with Joseph. Hannah and Cole both wanted to hold him and Cole said, "he is a cute baby mom". Even Ryan and Patrick were interested in the youngest Rank.
Just in case you all did not know this about me, I hate it when everyone leaves! I wish together time did not have to end. It is always over too soon.
Posted by linda @ 04:09 PM CST
I went to Austin on the morning of Oct. 30 to do a presentation for the Austin Diocese teachers - after which I had supper and spent the evening with the Austin Ranks - the high point of the evening was when Ryan told me that I am not old - gotta start a trust fund for that kid! On Thursday evening Linda got a call from St. Ignatius Catholic School asking her to come for a job interview for a first grade teaching position - she was calm and cool, but I was excited that even before completing her student teaching she's getting job offers! Joe and I spent Friday together - ate at a most interesting little Japanese restaurant called "ZEN" (Joe's recommendation) and topped it off with a trip to Amy's ice cream shop and an incredible CD store, "Waterloo." Yes, I did buy a new Andrea Bocelli CD - but only to be polite! (;-)
Friday evening was Halloween and doing Halloween with four kids is a real exercise in multi-tasking! Pat and Ryan were dispatched to their room to don their cowboy costumes and 10 minutes later, Pat tears out to the living room stark naked except for an oversized black cowboy hat - Joe deemed the picture I took of the visage as worthy of becoming a family classic fit for a rehearsal dinner enlargement.
Dad arrived with the trailer on Friday evening - we stayed at McKinney. We had a PCAT Board meeting in Austin on Saturday, after which we spent the rest of Saturday and much of Sunday at Joe and Linda's. We babysat on Saturday evening while Joe and Linda did dinner and a movie. It is a real trip keeping up with four!
Joe and Linda's next door neighbors had held a garage sale on Saturday to benefit Joe - they did pretty well, but the real winner was Hannah who had first choice of adult ladies clothes donated to the sale. She spent the rest of the weekend in all manner of oversized women's clothes and high heels...happy as a lark. Cole put dad to the test on Saturday evening by requesting assistance in his private quest to conquer high school math - negative numbers operations, etc. He and dad worked on problems for a half hour and dad claims that the kid is a whiz.
On Saturday afternoon dad met with the plumber who is going to take the tub out of Joe and Linda's bathroom and re-plumb the area in preparation for the renovations. He expects to do his work this week so that when we're all in Austin for the family meeting on Nov. 15,16 reconstruction work can commence.
We watched "Ice Age" with the kids on Saturday - what a great movie! Naturally, I identified strongly with the sloth, and the similarities between dad and the Mammoth are immediately apparent! On Sunday Joe demonstrated his new computer/speech device - the "Freedom 2000." It is an amazing machine - we all have to be grateful for Bill and Becky making that possible for Joe - it promises a great deal of independence and frustration relief for Joe when natural speech is difficult.
The trip home Sunday evening was uneventful. Driving two vehicles is a bit of a drag, but cell phones and a stop at Don Bravo's in Quero help. Keep the Faith! Love, Ma
Posted by grace @ 10:40 AM CST