Sleepy

 When I was in college, my roommate went out early one weekend day. It was early (college student early, anyway) when he returned, and I wasn’t awake. 

He realized he forgot his key card to get in our building but wasn’t worried, thinking: Matt’s window is right by the door on the first floor. His window is open. Surely, he’ll wake up when I call him.

Nope.

I didn’t wake up when he pried the screen off either.

Or when he opened the window.

Or when he climbed through.

Or when he replaced the screen.

I did wake up when he was closing my window. Go back to sleep, he said.

I can now top that.

On weekdays, my alarm goes off at 6:30. I give Fame a pill, pull on my shorts, and wait for my sister to get me fully dressed. On Thursday, I fell back asleep and didn’t wake up when she came in.

Or when she put on my leggings.

Or my socks.

Or shoes.

Or when she fed Fame.

Not until she started tapping me.

I was tired.

Mooning my niece

 I was trying not to use my right arm Thursday to rest my forearm. This meant holding on to a grab bar with my left hand while on the toilet. It did not work well, and I fell off on to the floor, banging my head.

Fame was right there, ready to help, so I told to bark. Actually, I told her to drop her toy (she thinks when she barks, people come in to see her). Then I had her bark.

I was about to  phone my sister, who I had just seen outside, when my niece,  who is home from college, came in.

Her first  glimpse must have been my bare butt because my head was under the sink. After assuring her I was OK,  she seemed to hold a little debate with herself about whether to get her mom. But then she just sort of shrugged her shoulders and asked if I was getting in my chair or on the toilet.

Then she saw my head. “Is your head all right?”  she asked. I asked her if it was bleeding. Just scraped, she said.

She got me sitting against the door jamb,  lowered the lift, and got me in it — all, she told her mom later, “with minimal laughter.”

She may be more mature, but she’s still awesome.

Have a drink

 Some people remember what they were wearing on some past day. I remember just about every instance of alcohol passing my lips aside for a few sips of wine or champagne here and there.

Liquor

At my first party in my second year at college, the host learned I didn’t like beer. He whipped out his blender and made me a vanilla daiquiri. I didn’t  like that either, but it was a nice thing to do.

My drink of choice when I  had to choose was a whiskey sour. I done remember why. I must have had a sip somewhere that convinced me I could tolerate it. I suspect a brother-in-law was involved.

My first was bought for me the summer I turned 21 by my boss at the Justice Department. I walked back to the office a bit dizzy.

My second and last whiskey sour came courtesy of one of my oldest sister’s friends. She wanted to see It Could Happen to You. I’m a fan of Bridget Fonda and Nick Cage, so off we went. We got there a bit early, and she suggested we get a drink at a nearby bar. I ordered a Coke. She responded, no way you’re making me drink  alone. I reordered a whiskey sour.

Beer

I remember having a  sip of Dad’s beer while he used the riding mower to cut Gram’s grass.

At the aforementioned first party, I got beer from the keg and had two drinks. I then went outside for two reasons: I thought I might throw up and I wanted to pour out my beer. 

Later that year, I became assistant managing editor of the student newspaper. After the first week, the outgoing staff took the new staff out for a drink. There was a pitcher at the table, and I was just nursing a cup with a sip here and there. At the end of the night, I was elected to finish the pitcher, which had about half a glass-worth, what was missing from my cup.

I recently had a sip of Guinness on a St. Patrick’s Day.

Which brings me to my oldest niece’s wedding last weekend.

They had a regular bar and a candy bar, or buffet. I was sitting next to my oldest nephew when he returned from the candy one with a nice little bag of treats.

At the end of dinner he asked if anyone needed anything from the bar. I was sure he meant the candy buffet, so I said, sure, I’ll have a nice assortment. He may have raised his eyebrows but off he went.

He returned with his sister, who put two little glasses of beer in front of me. Then he put two more and said something about getting a nice assortment. 

I then realized the problem. Whoops.

I also knew that there was no way I could tell him because I’d start laughing too hard, and only my sister can understand me through my tears.

I started sampling them, but he noticed I kept smiling. He asked me why. Fortunately my sister came up then, but even she couldn’t  understand until my third recitation.

And for the record, I wore shorts.

It took me a while to write this as I am having arm problems, but it OK today.

A treatment

 February 28 is Rare Disease Day, and the Friedreich’s ataxia community celebrated the FDA’s approval of the first treatment for FA. I wish I was excited. 

First, the improvement is quite modest. My neurologist said the drug takes you back about two years. I don’t remember 2021 being awesome FA-wise.  I know that anything is good, but combined with No. 2, this drug gives me pause.

Second, I  suspect it will be expensive. The drug maker said it will be covered by insurance, not that that’s a guarantee, and they set up a program to make sure people can afford it. That seems a guarantee, though. You don’t help people pay if it’s going to be affordable.  

We shall see.