The ALS Year (2003)

Letters from the Katie archive.

Remember what I said in my “Katie” intro page about how funny Katie is? Well, these aren’t very funny. The thing is, it wasn’t a wildly amusing time. Dad, whom we adored, was failing physically. Six months after this first entry he was diagnosed with Lou Gehrig’s disease. Then he went and died on us.

A funny thing happened at his funeral, though. The minister had poured Dad into a hole, Dad had billowed, and then everyone want back into the church social hall to drink. Katie and I snuck back out to keep Dad company. As a way of touching him one last time, I thrust my finger into his ashes. Katie screeched. “Ewwwww, Ginna! You just put your finger in Dad’s BUTT.”

When Katie writes about “Boopus la Rue” she means Dad.

February 13

I don’t know how many opportunities we’ll have to see Boopus la Rue in a semi-operational form. When I went in to see them last week, he scrambled for his two canes, and when he turned sideways he looked so thin and frail. My stupid ole eyes teared up the whole day afterward thinking about it. I’m not trying to alarm you. This was just my sad impression. I hate you with all my love.

March 22

‘I believe for every drop of rain that falls, a porpoise dies.’ How does that song go? I don’t think I have it right.

March 25

Last night I had a dreadful nightmare. I would be doing things like making a phone call on a public phone and I’d turn around and there would be a plate of grilled burgers. Someone kept grilling food for me. I woke up in a cold sweat. It was awful, Gins, awful.

On the news they keep talking about ’embedded’ journalists. Every time I hear the news anchors say, ‘we’re now speaking to one of our embedded journalists,’ I think they’re saying ‘one of our better journalists.’

April 12

I gotta go and run an errand, but before I do, I gotta tell you about my dream last eve. I was living at the Kennett Pike house and I needed to get downstairs quickly, so I ran down the back way, past Jay’s room. I swear that this area was haunted. A door flew open all of its own accord, it got terribly cold and I was overwhelmed with a “get out” feeling. Another door slammed shut in front of me and I screamed: ‘Help! Ginna, Helllllp!!’ Could you hear me? I needed you. Sob.

May 3

Dad was really in one of his down moods today, feeling frustrated and useless. We thought that perhaps fixing up a painting area for him would be entertaining. He said no, but I think that if it were all in place, he might use it. He can sit. He said he only likes to paint monsters and falling down buildings because if you make a mistake, what’s the difference?

July 8

Very quickly, let me express my heartfelt congratulations on your second place in the nationals. I myself have several firsts at the national Irish dance competition, but I don’t bother to display them. They are tossed into my bottom desk drawer.

August 10

Just how many cats do you have? [Your dog] Otis is very sweet. That kitten looks like a lunchable sitting next to his wolflike jaws.

It has rained so goddamn much that the pebbles are sprouting.

August 15

I’ve been reading a book called Tuesdays With Morrie about this younger guy spending his tuesdays with an older professor of his who has ALS. It’s very sad. I don’t really have much to say. We leave for West VA. tonight. Dad’s getting a hospital bed on Monday. We’ll try to help set it up.

August 16

There is not much to add to my earlier sparse assessment. I’ll have a better sense of things tomorrow. Dad’s spirits are excellent, though he does seem weaker than our last visit. I just told the kids that this would be their final visit and they are very somber.

Dad is napping. He gets tired out very quickly. We brought him some Garrison Keilor tapes to listen to and he seems to be enjoying them. We all feel so goddamn helpless in the face of this. TD came up earlier with his daughter and put in a ramp so that dad can roll out onto the porch. It does seem to tire him though.

August 29

Sorry I ain’t written. I DO hate you, but that ain’t the primary reason that I haven’t written. Things have been a bit chaotic here. There was a bed fiasco yesterday, where Ned and Peter and Mom had to rescue dad after he ran out of energy coming back from the bathroom and collapsed on the edge of the new bed, which then collapsed, so he was lying at floor level while Ned reassembled the bed. The trouble is that he tries to do things that he is unable to do, not that I blame him. Yesterday was one of those ‘I wish I was dead’ days. Call mom and ask her what happened.

September 27

The goddamn dog woke me at 3:00 in the goddamn phony morning to go out, and then he wouldn’t come back when I called, so I put on these dumb ass stretch pants, and went through the goddamn neighborhood looking like a goddamn psycho fool and yelling out ‘SSSSSAAAMMM’ in a screeching whisper. If the cops had nabbed me, no one would claim they’d ever seen me before. I know it. Anyway, I got back to the goddamn house and the goddamn dog was lying on the goddamn hall floor, wagging his goddamn tail. He’d slipped through the goddamn front door some goddamn time earlier. At least the goddamn cat didn’t escape.

October 5

Boopus is in some pain again, I think. His poor ole belly is acting up and though the pain medicine zonks him out, I’m not sure that it entirely diffuses pain. Mary is here, attending to body maintenance stuff. Mom said today how she felt for you, being so far away and all. She said to make sure you knew that both she and Boop were aware that the place you’d like to be is here. He seems a bit weaker to me than when we visited last, but he is still mirthful and goofy. I don’t think that will be suppressed until the very last. I’m reading to him, which gives me great pleasure, but may bore the hell out of him. I hate you.

November 19

Have you read Ethan Fromme? Can you tell me what its plot is? Specifically, the unusual plot twist towards the end. Someone referred to it today and I said ‘Ahhhhh,’ as though I was intimately familiar with it. Help me.

December 9

I heard a line yesterday that brought you to mind. A man says, ‘You O.K. buddy?’ The buddy says, ‘I’ll be O.K. when you’re dead.’

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