RankFamily Archives: February 2004
Got to feeling guilty enough about not updating the blog that I made myself sit down and do this. The truth is, there's not much to report. I guess I'm feeling mostly like we (Linda and the kids and me) are getting down to the grubby grind of fighting this illness. Linda and I are trying not to drown in the river of paperwork that springs from applying for disability. We try to plan to do as much as we can on the weekends, for spring break, and during the week, but not too much for me to handle. It's a challenge. We all try to fortify our morale against an unkind future in the course of the disease, be it next year or tomorrow.
The changes I've noticed since last I wrote are in speech and swallowing, primarily. I have also noticed some fatigue problems, especially in my legs. And my left hand, and especially left thumb, keep going south. My right ankle is pretty much totally unresponsive. I'm using the AFO (ankle-foot orthotic) a lot now. I can tell my right hand grip is weaker and cramping is becoming more common now. Chewing is a bit tricker now, too, for several reasons. The first is that my tongue is weaker. But it's slower, too, which throws off my timing. And that leads to tongue biting. So whenever I eat, it looks like the bolus (the wad of food) I'm working on is really hot. My mouth is usually partially open, and my jaw is moving all around to try to take over some of the work of getting food back to my molars. It'd be comical if I wore a funny hat. Of course, that's the whole idea of a funny hat, to make the wearer seem comical. And it'd work for more than just eating. The funny hat making one seem comical, I mean. I was going to say it's a comic catalyst, making one comical when doing anything in a funny hat, but you could do nothing and still be comical in a funny hat. That's the beauty of funny hats. I'm off to find one. I'll let you know how it goes.
Posted by joe @ 12:41 AM CST
Today's homily at church began with Father Barber quoting Ralph Waldo Emerson's question, "If you were arrested for being a Christian, would they be able to find enough evidence to convict you?" Well, I now have enough evidence to convict two priests and dozens of parishoners at St. Pius X. Rusty and I were invited by Msgr. Shirley to sell some of our Journey of Hope note cards outside the church after the masses this weekend to benefit the Joe Rank ALS Fund. We did so, and after this experience, I am sure that I walk and work among Christians.
Our total proceeds from the sales and donations at St. Pius X are $1762.00, not to mention hugs, prayers, expressions of concern and support and, in general, an outpouring of love. It was a very emotional couple of days. I am reminded anew that we're not alone on this journey. Grace
Posted by grace @ 11:07 PM CST
On the way home from preschool today Ryan said to me, "God is my teacher". I asked him what does God teach you. He replied, "God doesn't have toys, just air". Later, he said that, "God does have a block center". Then he turned to Patrick and said, "do you like God?" and Pat said, "No". (I hope God understands that Pat may just be having an off day.) Ryan replied, "I LIKE God".
Posted by linda @ 04:49 PM CST