RankFamily Archives: October 2005
Halloween is upon us, and you can almost taste the sugar and cheap chocolate in the air. Ryan is a skeleton, Pat is a bat, Hannah is a mouse, and Cole is wearing a wolfman mask. Half of the fun of Halloween—for me at least—is the candy bartering that ensues between the kids after trick-or-treating. Its like a sucrose bazaar. And now that the twins are in school, their negotiation technique is sharper and more sophisticated. Shrewd. Wily. I love it. Gone are the days when Cole or Hannah could take advantage of them.
In fact, even their comebacks are more deft. Well, they're getting there. Cole did something to Ryan that Ryan objected to, and Ryan admonished him with, "You're going to be paid for that." Then halfway down the hall he corrected himself: "You're going to pay for that." I was incapacitated with laughter for about a minute.
I've been watching too much television this week. Scary movies mostly. I'm a B-movie junkie. There are worse addictions, but I'm not so sure this one is harmless. The guilt from investing two hours into such a silver screen classic as "The Devil's Rain" is inversely proportional to the satisfaction gained from sitting through it. I'm attempting to atone for it by posting here before two months have gone by.
I am still cranking out tunes for the band to undertake when we finally get to practice again. I think the last time we played was the gig on Sept. 27th. I don't like month-long stints without playing together, because I always feel like the attrition of my abilities is glaringly obvious when we finally do get to jam again. That is one of the things that brings me down the most. Just as I was getting sick, I bought some jazz theory books and started practicing every day. I learned a lot of new scales (the modes of the melodic minor scale), and was really getting my chops back in shape. I was playing with a jazz combo, and seeing encouraging progress. Then ALS took a hand—literally. I can't even staighten the fingers of my left hand anymore, much less spread them apart. I am still typing well, though, so I can compose with the tools I have on my laptop. That counts for a lot. Hopefully I will be able to compose until a cure is found, and with all the access software and hardware that is currently available, I expect to. While my shrinking abilities are not easy to accomodate, the really hard part will be my recovery. I say that because I know myself well enough to know that I will never be satisfied with the pace of rebuilding my body. I will be frustrated and discontent with what I will view as meager progress. Of course, one of the upsides of my disease is learning patience. Patience has been a staunch ally so far in the course of my disease, perhaps it will remain so during my recovery.
And yes, its still "when I recover", not "if I recover".
Posted by joe @ 08:49 PM CST
I went to the pulmonologist yesterday, and it was mostly good news. My diaphram is still down low, my inspiratory and expiratory force is still ten points above ventilator consideration, my blood oxygen level is fine (96%), and my forced vital capacity hasn't changed in three months. So all that news was well received. But that is not what motivated this entry.
It happened that my electric wheelchair was down for the count yesterday—bad batteries. So I was in the front seat when we stopped by to pick up the twins on the way home from my appointment. Ryan was the first into the car, and after the greeting, he took stock of the situation. Dad is in the front seat. Not in his wheelchair in the back. Whereupon he asked, "Can you walk now?" I shook my head as I retraced his mental steps that led up to his question.
"Oh, then why are you in the front?" he asked.
It took a few attempts before he could understand my speech well enough to glean my explanation. Then Patrick made his entrance, and he immediately asked, "Can you walk now?"
As Ryan bruited my explanation to Pat, I again marveled at the indiscrimate cruelty of my disease. My sons remember me wrestling with them, playing with them. Chasing them. Dancing with them. Being a dad for them. Not just their perception of what a dad is, but mine too. They saw me in the front seat and for a brief moment their wish was granted; their prayers had been answered. It only took a shake of my head to reduce their excitement and anticipation to smoldering disappointment. My unwitting deception had suckered them both. Of course, they just picked themselves up, dusted themselves off, and were off and running again, as five year-olds are wont to do. But their dejection was amplified in my mind, resonating with my own sorrow and disappointment.
But it also threw gasoline on the fire of my resolve to outlive this disease. True, ALS has taken a number of things from me: sports, walking, piano skills, eating. But even if I never get to do any of those things again, I'd call it even if I were just able to see my kids grow up. As my disease progresses, I begin to see how despair and frustration erode conviction and hope. But having people who love and value you is a powerful fortification. Especially people to whom you owe a responsibility. As imperfect a father as I know I am, my childrens' concern and expressions of love leave me no doubt that they would miss me terribly if I were to lose my fight.
I see this in almost every interaction I have with them. But it is punctuated at times like yesterday when I had to answer "no" to Ryan. He climbed up to the front seat, threw his arms around me, and hugged me.
Posted by joe @ 01:07 PM CST
Well, where to begin? One of the (only) benefits of a protracted hiatus from the weblog is the profusion of topics when I finally return. So, off we go.
The big news around a month ago was my anxiety attack. I have had several since the illness began, mostly all relating to getting something stuck in my craw. Something that I'm not able to clear. Since I'm not eating solid foods anymore (they were the culprits in past episodes), it was probably a piece of mucous or some similar biologically generated material. This time, it struck me when Linda and the two older kids were around, so it got run up the flag pole as an issue to deal with. And deal with it we have, right down to posting a plan of action on the fridge. I'm also on Zoloft, which is a medication designed to stave off anxiety attacks. It seems to be working, although I can still get into a panic cascade if I try. But that would be stupid, so note to self: don't do that.
Another tidbit I mentioned last post was the share-the-care group. It is off and running, and working well so far. It was meant to be a local ring of alternate caregivers, but all are welcome to join. Except terrorists, we have a strict no-terrorist policy. The group is here, or if the link doesn't work for you, drop me an email or search for "joerank" in Yahoo® groups. The main idea behind the group is for friends and aquaintances to cover some of the gaps in care that arise by me (1) having needs, and (2) not being able to contribute to household operations. We put an event, such as a doctor visit, on the group calendar, and someone from the group volunteers to provide transportation. It is off to a good start; we have had half a dozen or so events that have been covered already.
In other news, the band played an outdoor gig on September 27th. It went pretty well, though having to be lifted onto the stage—wheelchair and all—was a tad hard on the dignity. Get a load of the guy who can't speak intelligibly talking about dignity. We played from 7 to 9 pm, and the temperature was about 900°. Celsius. We soldiered through, though, even though we had to toss some tunes because I can no longer play them. I sometimes feel like I'm tiptoeing a fine line between defiance and denial. When will my abilities diminish to the point where I can no longer play? I almost wish the decision weren't up to me. But, my strategy for dealing with it is becoming familiar: just put my head down and keep marching on. I am so fortunate that I don't have to do it alone. The other band members couldn't be more gracious, considerate, or supportive. They would prop me up on stage if all I could do would be to drool on my keyboard. Which might sound better anyway. Note to self: work on drooling chops. The next gig is November 4th at Tazza Fresca.
As far as how I am doing, I don't notice much change. My hands are getting weaker, and I'm cramping a bit more. I have come to depend on my wheelchair a lot more. Oh, and I got a new toy: the cough assist machine. It is a variable strength positive/negative airflow device. I think insurance picked up the bill for it. Just in time for the cold and flu season.
Anyhoots, thats about all that has been cooking around here. I would profess to update the blog more frequently, but you're on to that old ruse. So just keep tuned and watch the science churn and burn.
Posted by joe @ 08:37 PM CST