Say what?

I do not hear very well, so I was more or less resigned to not hearing most of the conversation when five of my friends from college came over last night.

I was right. It wasn't until this morning that I learned that the wife of one of the people had gone to the same college my niece goes to now. My sister, who was in another room, told me that story and a few others that she overheard.

What I didn't really realize was that I have developed a trait to understand conversation, and my friend standing next to me was not really ready for it.

When someone says something to me that I don't understand, my first reaction is to time to the person next to me. If it is my or my sister, for instance, they know what I am doing and they translate for me.

My friend, unfortunately, did not know the deal, although she rallied once I said something like, " I didn't hear that."

All in all, it was great fun to see people, some of whom I hadn't seen for years. I do wish I heard more of the stories.

Thank you, Friedreich's ataxia.

Siri cares

The most recent update to Siri, which I installed on my watch a few weeks ago, is not so good at understanding me, but I know her heart is in the right place.

Last night I was trying to call my sister on my watch, so I said “call,” and Siri responded, “ to who?” I am not going to criticize her grammar mistake there. Neither am I going to criticize her inability to understand me when I send my sister's name. Because she heard, “I am lonely,” and she responded, “I'm sorry to hear that. It might help to reach out to someone you trust.”

I'm glad she didn't automatically put me through to a suicide hotline or something. But what a caring soul!

A musical grand slam of a Christmas

 It was a strong year for collectibles in the Matty household. Toys for sure, but I also got back into baseball memorabilia, mostly cards. It was one of my nephews who suggested that they belonged in my Nativity as well. A solid idea.

Starting off from the left, perhaps I should say leading off, is a card of Bob Allison. He was a Washington Senator, which is enough for me to collect the card. But more importantly to me, he founded the  Bob Allison Ataxia Research Center. He did not have Friedreich's ataxia, but he did have an ataxia. That's good enough for me. He was also a pretty solid ball player. 

I read a book recently called the Soul of Baseball. It is about Buck O'Neil, a former Negro leagues player and so much more. That convinced me to find the ball under Bob’s card, so that I would have something related to Buck. I won't pretend to be as optimistic and kind-hearted as he was, but I think I'd like to be.

Rounding out the baseball part of the Nativity is Orioles outfielder Al Bumbry's autograph. This is not new. It’s from my childhood. I have several. You see Al was my favorite player. He was not that great statistics-wise, although he was the 1973 Rookie of the Year. But he could do it all  as far as I was concerned. He had speed, he could hit home runs,  he was a good outfielder, and he served in Vietnam.

As far as what this trio would do for the Nativity: I guess maybe they'd be there to teach Jesus how to play the greatest game of all. They also have bats, so they wouldn't be bad defenders if needed.

Next, we come to the new toys. It the Electric Mayhem from the Muppet Show. At least some of them. Lips, the mumbling horn player, is not available in this set, and Animal was too expensive. But the other four — Floyd, Janice, Zoot (sitting on the windowsill) and Dr. Teeth — are here and we have stand-in drummer. 

Since she lived next door, we decorated her Christmas tree every year. The little drummer boy (to the left of Bob Allison) was the source of more than one argument, as to who got to hang him on the tree. He came to live with me when Gram died, and I have to say he looks more like a drum major than a little drummer boy, but I'm sure he will be up to the task of laying down the rhythm for the Mayhem, who would provide entertainment and soothing lullabies. 

Baby Groot (in the corner) is either a symbol of how much I am loved or how sick I was over the summer. Maybe both. The niece I live with gave it to my sister to bring to my hospital room when I had sepsis. She had made it for me a while ago. It was a huge hit. One of the hospital people took its photo because he was so enamored with it. Groot is just for me.

Santa and the Big Three wrap things up this year. 

Merry Christmas. 

Early morning

 I woke up this morning at 3:39 a.m., but of course I didn't know it was 3:39 a.m. 

I didn't realize it until I retrieved the bag for Fame's pill, which normally brings her to the side of my bed immediately. This time she did not move, so I looked at my watch and saw the real time.

I had, of course, already taking the mask off, and I wasn't about to put it back on.

That ruined my streak of wearing the mask at least six hours a night.

I still can't decide whether the sleep machine is honestly helping me.

I was tired when I woke up but not later in the day, so I suspect not really.

Waking up at 3:39 is probably what made me feel tired.

Work or retire

 A friend of mine is retiring in March. This has set off a long-running debate in my mind about whether I would retire if I were able. 

On the one hand, it would be nice not to work. Not to have required deadlines and stuff like that. It would also be really nice not to have to get up early.

But the other hand weighs in suggesting that I'd be really bored and would miss people even more when I do working remotely. 

That is sort of where I stand on the issue, not to mention that I can't afford to retire.

Perhaps I will just keep working.

Not as independent as I thought

Yesterday what's my sister's birthday, and she and my brother-in-law were out on the ramp to our back door talking to some of her well-wishers when I wanted to go for a walk. So I got myself ready. 

When she came in before I left, she jokingly said something like, oh, so you can put your coat on by yourself. I responded it just takes a while. Like everything in my life. I think that if I had many more hours in the day, and more energy, I could be more independent. But I am not sure what the advantage would be. I guess it would make other people's lives easier. It would make mine harder.

Today, I realized I am full of shit.

I got in the lift to go to the toilet and as I was lowering myself it stopped right as I touched the seat. The lift has two cords attached: One lowers the lift if you lose power, the other turns the power on and off and is a reset switch. What they really do is get tangled up and cause the lift to shut down. That is what happened today.

I reached up and was able to untangle the worst part but not the rest and the list still wouldn't work.

I knew I had to call my brother-in-law, who was working from home today, but as I was reaching up, I started to slide forward.

A quick look showed me that the bidet seat had come unattached and was sliding forward. This is actually not unheard of. The bidet requires you to sit fairly straight and steady. Maybe it's not a great product for those with Friedreich's ataxia, but anyway ...

How to call my brother-in-law when I am holding on to my grab bars with both hands keep from falling. I knew he would not hear Fame barking, so that meant I would have to use my watch.

I tried hey Siri multiple times. I didn't think it would work and it didn't. Siri is not my most reliable friend. Finally I managed to hit the buttons I needed to and my brother-in-law came to help.

He got it untangled, but the lift remote still would not work. After fiddling with the reset to no avail, he lifted me into my chair.

I then called mom to come up because I thought we were gonna have to call the technician. Actually, though, replacing the batteries solved the problem.

And just in case you were wondering, I was extra full of shit after this. My adrenaline kicked in, and I did not have to use the toilet anymore. Also, when I had to type "full of shit," I said, "full of" and wrote the rest. Saying it out loud would have been too weird. 

Hot N cold

 After attending a meeting on teams where several people praised my work , I went to use a urinal. It was then that I almost started to cry. 

Not because anything bad happened when I was going to the bathroom or because I was so tickled with myself, which I am regularly. 

It was more because the latest symptom that I am having — I the loss of temperature regulation — it's just so overwhelming to me. At my desk, my hands and feet are frozen, but the rest of me feels like I am in a sauna. And that's how it was after my meeting. It was just defeating. 

There is not much one can do about this issue. My neurologist did not have any ideas. I mentioned add to my regular doctor, and he was sympathetic but also did not have any ideas. 

Friedreich's ataxia has the most crappy symptoms, and they take so much out of me. I'm just like Katy Perry.