Merry Christmas

 I am still on a break from writing the blog, but how can I not write about my Nativity?

As always, we have the Big Three, as the Holy Family is called here. But we also have another family present, along the back: the Bat family, Nightwing, Batgirl and Bugs Bunny as Batman. These were all gifts. We had Batgirl as children, well, my sister did. She (Batgirl) did not have hands that lent themselves to our favorite game with the Mego superheroes: sliding them down fishing line from a second story window over a tub of mud and trying to dislodge them into the mud. Sadly, this is probably why none of our toys made it to adulthood in good shape. But now I have her, in 12-inch form no less. Since there are three, it seems a good plan to make them the stand-ins for the Kings, even if one of them is more likely a queen than a king.

I am a sucker for Green Lantern. I think it is mainly because he can make anything he has the willpower for. He also has a great rhyme. I figure this figure, which I got from my brother-in-law, will be the angel.

There is Buffy, of course, at far right. Last year, one of my nieces got married and asked me for some Nativity figures. I did not really think that she wanted my awesome type of Nativity.  However, I could not avoid getting her a similar Buffy. You can always use a slayer to fight off “the forces of darkness; to stop the spread of their evil and the swell of their numbers.”

Sports card wise it was also a pretty good year. My brother gave me a Boog Powell card, knowing my love for the orioles, and Rickey Henderson rookie card. But my favorite card, or my favorite baseball card, is this Mickey Rivers from my collection. I would just like to state for the record that I hate the Yankees and always will. But this was the best card I have of Mickey, and he said one of the best things I have ever read: “Ain't no sense worrying: If you have no control over something, ain't no sense worrying about it -you have no control over it anyway. If you do have control, why worry? So either way, there ain't no sense worrying." I also got one of my older nieces to autograph a card from when she was playing hockey. Her team had been inducted into the town Hall of Fame.

Greedo makes an appearance mostly because he is much maligned, undeservedly in my mind. He was a petty thug, not a killer.

And finally there is the cowboy writing riding an ostrich from the island of Misfit Toys. Santa wraps things up.

Merry Christmas

From baseball back to superheroes (mostly). It is not that I got no baseball collectibles this year, but the 2024 Orioles that I did buy were nothing to be celebrated.

We'll start with Lucy and Charlie Brown from A Charlie Brown Christmas, a quality Christmas special if there ever was one. It just makes you feel good. 

Behind the Big Three is the Spectre. He is the spirit of God’s vengeance. There were plenty of people in biblical times for him to feast on so he's gonna have at it. 

The Muppets return with a California Raisin to play music for the Nativity. I’m thinking like when people come to pay their respects, like the Three Kings, they could play walk-up music. 

There is also a Shogun warrior up in the back by the window, just keeping an eye on things ready to pounce if needed.

Then there's Buffy ready to go. It's just not a nativity without Buffy.  In fact, one of my nieces got married last year and she asked me for some nativity figures. I think she wanted real figures not superheroes, so I provided them … although I did give her a Buffy because she makes everything better.

I was watching the movie Red One recently, and Santa Claus in that movie has a bodyguard. In the movie, it's the Rock, but I don't have a Rock figure so the bodyguard of my dinner is another PlayMobil figure, a knight from when I would little.

Finally, there is Shazam. I never had a lot of Shazam comics back when I collected them, but he has always been a favorite. It might have been because my grandmother had a Smithsonian collection of old comics and he featured in it. It actually had a lot of weird comics that I didn't care for like war comics and little Lulu, so maybe I just liked Shazam because he was what you're supposed to read in comics. The movies are pretty fun, too, especially the first. All this even though he's kind of a amalgam, with powers related to Solomon, Hercules, Atlas, Zeus, Achilles, and Mercury). So a Jewish King, several Greek gods, a Greek myth hero, and a Roman god. Nevertheless, still fun

Merry Christmas.

Very disabled

 It is fairly easy to forget I am disabled at work. I do a good job and am well thought of by my co-workers and bosses. Years ago one of my boss's said to another one in my presence something like, the problem with Matt is everybody likes him. 

But then something inevitably smacks me square in the face that I am monstrously disabled. 

That inevitable something came the last couple days. I had to get a new computer so I told the IT folks what programs I needed on my computer. They were just four. 

I do not know whether I had to log in myself for anything to be installed, but none of my programs were put on in advance. The operating system not up to date, either. So I spent two and a half hours at the office with an IT person I barely understood and who barely understood me working on my machine. They installed three of the programs allegedly. They told me they could not install the fourth one. So I left with my new machine. 

It got worse. 

When I logged in and started working on the new machine, it quickly became apparent that it was not set up for someone with mobility issues. There is a feature on Windows machines called filter keys that tells the computer to ignore accidental keystrokes. I set this up, but it didn’t not work very well for some reason. So I sent an email to the IT person and copied my boss and her boss explaining the situation. I thought I would get attention because almost every letter was repeated at least once. I also asked them to install to basic programs that they had left off. 

For some reason, when they contacted me, they seemed not to care about the filter keys and instead only worried about installing the  missing programs. 

This was even made worse because their voice was not one I am used to hearing and therefore I had no clue what they were saying often. Making matters even worse, once they were on my machine, they minimized the chat screen that had the captioning that I needed to understand them. 

Then I realized that one of the three needed programs was not  installed.

I finally got a setting of the filter keys that was okay, not wonderful by any means.

I guess I will see what the next day brings to this disabled person. (It mostly brought working filter keys.)

The song

 Once, when we were both closer to college age, my sister told me about a song by a band she liked. 

In the song, the singer, a woman, talks to her brother and says she will help him always. Even when he has lost his strength and he is too tired to go on, she will be there. 

It is a song that even now makes me feel happy and sad, loved and teary all at the same time. 

On Tuesday night, I was having some problems. It started with my realization that except for a Gatorade sports bag when I was in North Carolina at my first job, I have not ever one anything any kind of lottery. 

I did, of course, win, or lose, the genetic lottery by getting Friedreich's ataxia. I was thinking how random it is for me and my brother to have Friedreich's.  I forget my probability studies, but as I understand it each of us had a a one in four chance of getting FA. We both did. No one else in my family has it. 

My feelings kind of devolved from there. On the verge of tears, I decided to listen to that song. It helped, knowing that I am loved as the singer clearly loves her brother. 

The next night, laughing told my sister that I wasn't sure I should tell her what I was listening to the night before. I did, of course. Her response was that I should never listen that song not be allowed to. 

I suspect the brother in the song dies, and that's the reason for her strong stance against me listening to it. 

Despite her thinking, I will still listen to that song when I am sad probably mostly. I am sure that it will make me sad and make me cry. But it will also remind me how much I am loved and that is always worth a few tears.



Stop

On my walk today, I was crossing the street between two trails, in a crosswalk, with other people crossing the other way. There was one car just starting on the road, and there was another car the other way several hundred feet off. But apparently it was not for enough off for one of the joggers going the other way. 

This jogger had on an Army T-shirt and she stopped in the middle of the intersection, put her hands on her hips and just stared at the car. 

Maybe they they had just purchased the T-shirt because it looked cool and not because they were veteran, but regardless I would have stopped. That stare was something else.

I, of course, have no proof that she did it because there was a wheelchair user in the intersection, but at the same time I saw no reason for it except maybe to protect me. 

Dream blog

It happened again, a stranger picked my nose. That is how I decided to start the blog in my dream. 

It was an odd dream, to be sure. 

I went to work with my sister, and after a little while in her room some other adults came in. One was a friend I know. One was an older woman who said to me, “Oh, you have a booger.” She then reached up and plucked it out. It was just weird. 

There was more, too. My sister didn't get me for lunch. Then as I was going home, it started to rain. I have no idea what it all means.

As all this was going on, I was contemplating in my dream how I was going to write the blog about this incident.

Even Lyle agrees

 

 It ought to be easier. 

When I get in bed, I am usually hot. For that reason, I cover myself at most with the sheet. But if I wake up in the middle of the night, as I have been doing this week, I am usually cold. 

That requires me to cover up with the fleece that is next to me want on the bed. 

It sounds simple enough. In practice, it is hard to impossible to get anything over my legs.

 

Last night, for instance, I gave up trying to get anything on my legs beyond the sheet and just covered up my chest with another fleece.

 

Being cold, I guess, is just something I will have to put up with.

At least I have hairy arms

 It's been a little over 26 years since I learned that I have Friedreich's ataxia. I don't think I have ever been as pessimistic and sad about my FA as I have been recently. 

Certainly, the disappointment of the drug trial plays a significant part. But the inability to have any type of temperature regulation is having a real effect. Take any night this week: I cover myself with a sheet then uncover myself and go back and forth numerous time. Similarly, I turn the ceiling fan off and on. I put a fleece over my arm and upper body and then I take it off because I am too hot. Last night, I wound up falling asleep with a wet washcloth on my forehead to try and cool me off.

That doesn't even include the daytime hours spent feeling like my body is drenched in sweat only to realize my skin's bone-dry.

I honestly don't know how I can survive this for any length of time. Although I am not sure there’s another option beyond just deal with it. 

Another issue is a recently completed natural history study about Friedreich's ataxia that I did. It asks if one’s hearing or incoordination or incontinence or whatever had an effect on your lifestyle in the past four weeks. Honestly, it didn't for me — not in the past four weeks, four months, or really four years. That's because these things have been going on for a large part of my life and I've adjusted to them years ago. So no, my fatigue does not inhibit me anymore but that is only because I have learned that I need to take a nap in the afternoon after work. And I know that I need a lot of sleep on the weekend to recover from the week 

So with all that going on, it was nice to hear my cardiologist saying we should do an echo only every other year instead of annually. He feels that things are fairly stable heart-wise. It doesn't really make up for the rest, certainly not when I was told I was unlikely to have heart problems a few years ago. But I suppose I better take what I can get. Although I refuse to consider the older man who complimented me on my hairy arms a positive.

Stupid remote

The remote control is definitely the weak link of my lift system.
It tends to to stop working after about a month with no indication. If you change the batteries, it usually starts right up. But I am not convinced it needs new batteries. It often works if you just remove one battery and put it back. Unfortunately , the batteries are behind a screwed-in back, so they cannot really be easily removed or changed. Certainly not if one is by oneself.
I have had two or three remotes and am now on a beta test of a different type of remote. But it seems to share all the rotten aspects of the other one. For instance, it failed last Monday for no reason that I could see, so we changed the batteries and it worked fine … for a day.
The next day I was on my own in the morning, an I was using lift to get off the toilet. I had just pressed the up button, and it stopped working. Obviously, I knew it was not the batteries.
After thinking about my options, I used my thumbnail to unscrew the back and remove a battery, actually I didn't even remove it, I just rolled the battery around and that worked fine.
When I am getting off the toilet, I usually stand up in the lift, wițh it just under my arms to pull up my pants and empty out my bladder completely or at least more completely. The problem is if I am not careful I can pee on the toilet seat easily.
With my mind on the remote, that is what I did this time.
I did not want to sit back down in pee with my pants pulled up. I had parked my wheelchair just about three feet from the toilet. So I thought to use the lift to walk t my wheelchair rather than sit back down.
It actually worked fine. Until that is, I pushed the pad on my wheelchair all the way back.
I decided this was a bad idea and it would be uncomfortable. So I used the remote to sit down on the floor, put my legs in the left bracket raise back up and then go to the wheelchair and fix the pad.
Once again this worked fine … until I sat back and pushed the pad all the way back again.
At this point, I decided to screw it. A little discomfort was certainly not intolerable. Eventually mom would come over and she could fix the pad. That is what happened.
I blame the pathetic left remote for that morning failures.

300 apps

 On a magnet board on my bookcase by the bathroom is a gift certificate from my nephew promising to download 300 apps on my phone. He gave it to me 10 or 12 years ago and while it has an expiration date of never, I suspect he want ever fulfill it. That's okay, it makes me smile every time I look at it. Even my iPad, which did have games like Fortnite and Brawl-stars, didn’t ever have 300 apps. 

It makes me smile because even now it seems like such a perfect reminder of my nephew. 

First, he is a giver. There are many, many people in my family who help me. My nephew is definitely one. Every time I ask him to do something, he says sure and does it. He always opens the door for me when I come back from walks. He also loves his phone. Finally, it reminds me of one of my favorite pictures from probably the same era as the gift certificate. It's me on my chaise lounge in my room working on my computer. Next to me in my wheelchair is a little person, my nephew, with bare feet over one arm of the wheelchair and his back against the other arm, playing on my phone. 

One time when we were on vacation, another nephew similar in age said something like he thought he would be in a wheelchair when he grew up and that we will live together and roll around and egg people.

I have no idea where he got “egg people” from. I am pretty sensitive to egging because that happened to me one year Halloween.

But mom was apparently quite moved. Despite the eggs. She pointed out that he had no fear of being in a wheelchair because of me. He did not wind up in a chair, and honestly, I am not certain that it is not something to fear.

I think mom meant he did not fear wheelchairs. 

The nephew I live with doesn’t fear chairs either. Whether it's sitting in one while playing on my phone, riding on the back of one, or racing me in an old chair I had … To my nephew, and other family and friends, wheelchairs are just a part of who I am and he doesn't mind. All that from one gift certificate. 

No respect

 I have never been a huge Rodney Dangerfield fan, but after 14 years of living with my sister family, I have great appreciation for the ”I get no respect" line.

it's not just my sister and brother-in-law. I don't expect them to show me any respect. If they did, I'd worry I was dying or something.

But my nephew and niece , they're the worst. For the best, I guess. No respect but much love.

For instance, I was talking to my sister recently and my niece was there. At one point, she started to laugh to herself and said something like I have to tell you something really funny. She then waited for us to finish talking and said you (meaning me) are just at the right height and then she pretending to kick me in the neck..

As someone who can't stand, let alone kick, this struck me as a Jean Claude Van Damme move. She kind of bent over anď raised her leg and then bent her knee and. made it straight pushing it her foot into my neck. If it wasn't so mean I would have been impressed. 

My nephew and niece are back in college , so it is quieter and I don't get kicked in the throat. It's a small price to pay for all the love that it.

It’s always FA

 I audaciously decided recently that a recent physical problem had nothing to do with Friedreich's ataxia. My neurologist finally corrected me. 

I generally assume that everything is related to FA, but this was the problem with the soles of my feet feeling like I had been standing up for hours. It didn't make sense that it would be FA-related. 

I assumed that it was related to my standing in my wheelchair for about 30 minutes a day or maybe because my foot plate was too high or because when I cough my feet move and wind up sitting on the rim of the foot plate, which is higher. 

But mom finally persuaded me to email my neurologist. It could it could be neuropathy due to FA, he quickly wrote back. 

Serves me right for doubting you, FA.

The impossible dream remains just that

For much of the summer, I dared to dream the impossible dream of a life unburdened by Friedreich's ataxia. Last week, the unbeatable foe kicked my ass.

The drug study I was involved in four or five years ago sought to determine if one could replace the protein that the cells of Friedreich's ataxia patients don’t make. I was going to say can’t but who knows, maybe they can and are just being jerks. 

Anyway, this is a drug that I have long waited for. I'm certain that it is more complicated but to me it just makes sense, like a diabetic taking insulin. Early on when discussing this drug, my neurologist said something along the lines of this is not a treatment it's a cure. 

So yeah, I wanted to be involved. 

And in June I was invited to take part in a long-term study of this drug. 

This is what you've been waiting for! a friend excitedly texted me. I was more excited.

The study folks were very clear that there were known no benefits and  there were risks. But because there were no known benefits, I was free to imagine my own: maybe my hearing would improve, or maybe my eyesight, maybe I could stand without a wheelchair to help, maybe I wouldn't be glad when the injection fraction of my heart is low normal, maybe I wouldn’t cough as much … 

But after talking to my neurologist at the screening and then to Mom and my sister, I determined that this study at this time was not for me. 

I know that I made the right decision. That knowledge does not at all keep keep me from being crushed.

I try to avoid hoping or dreaming, especially when it come to Friedreich's ataxia. That way I avoid being disappointed. Like now.

The unreachable star remains out of reach.

A sensible risk

Whenever my sister leaves me alone in the house, she says something like don't be stupid. This means don't take risks.

Now, regardless of whether she's here or not, I kinda use it as a mantra.

For instance, I said it to myself as I was recently preparing to unbuckle my seatbelt to get into the lift. The lift was about five feet away still, so I chose to move the lift closer before I undid my seatbelt.

The problem is, and I know she knows this, when you have Friedreich's ataxia , it is hard not to take risks. If I didn't take risks, I would bed in bed 24 hours a day, which is modestly more than I am now, not a tremendous amount more, especially on the weekend.

What I need is to take sensible risks.

What is a sensible risk?

Makes friends easily?

In kindergarten, we didn't get A's or B's. We got M’s, P’s, and N’s for most of the time, part of the time, and not yet. 

I got M’s consistently, except for one — makes friends easily. That was a part of the time, the bane of my kindergarten existence, which stayed with me through life.

Until I reached college, I would say I maybe had three friends. Sure, there were others I would say hi to and chat with at school, but no one else I’d really call friends. Even the three are kind of a stretch. 

In college and grad school, I got a bit better, but making friends is hard.

Getting a service dog helped, but even then it has not been easy.
This is all to say that making friends is a struggle for me, even without the crap of Friedreich's ataxia.

I went into the office a few weeks ago just for a couple hours to talk to my boss and see some people. It was wonderful. My closest friends at work weren’t there, which was too bad, but it’s hard to dispute how much people, even those with Friedreich's ataxia or perhaps especially them, need connections with people you aren't related to.

A lot of people would telework every day, I have no doubt. And it does have benefits. I get up 20 minutes before a log on and I don't shave every day. Nevertheless, if my body were my own instead of Friedreich's ataxia’s, I would go into the office daily. 

A nice breeze

 I don't really remember either of my grandfathers. They died when I was like 7 and 10. 

I really just have images, which might not even be memories but things  I heard about or photos I saw. 

For instance, I remember getting a little slot machine game from one of my grandfathers for Christmas. My parents had bought it because he didn't shop, and I remember him opening the present himself and being like ‘“let's see what I got you.”

The other one, who died when I was 7, I don't have many memories or even images of him. 

I do see him lying on a chaise  lounge in a jacket, but I have seen pictures of that, so I suspect it's just a memory the photo.

Nevertheless, I have been thinking about that grandfather a lot recently. With my temperature regulation issues, it is more comfortable for me to sit out in the 95-degree, humid-as-all-get-out weather than it is to sit inside. 

I am sure this is not a memory but something I have been told by Mom. Apparently, in the summer he would sit outside, and when someone would ask him if he was hot, he would say a nice breeze was blowing to keep him cool. 

It was obviously much much cooler 40 years ago when he would have been sitting in the sun than it is today. But I feel the same way. 

I suspect he would not be sitting outside on days like today given that he did not have Friedreich's ataxia, but I do like to think he might be out there with me. There really is a nice breeze.

The worst

 It is bad that I have sleep apnea. 

It is worse that the apnea has advanced enough that I need to use a sleep machine. 

It is also rotten that the sleep machine I use was recalled in June  2021. Apparently pieces of the insulation were disintegrating and going down people's throats. I read somewhere that the company knew of this problem for a ticket but did not move to recall the machine or fix the problem until it became well known. If true, this surprises me not at all. I hold companies in general and this company specifically in very low regard. 

Mine was OK. 

In fact, my machine was not replaced until November of 2022. As requested when they sent the new one, I returned the old one using their pre-paid, pre-addressed label. Obviously, I didn’t request any tracking or keep it if I did.
 So this happened like 20 months ago. 

They eventually settled and are supposed pay each person who had a machine at least $100.

If you are like me, however, you might have an issue getting the money, and that is the worst. 

I'd began receiving email that said I needed to return the recalled device to get my money. The first time this happened we called and spoke to someone who gave us a claim number and said everything was OK. But I continued to get the email. And time is running out, so we called this week. 

The upshot was they are not gonna pay me because they say they have no proof it was returned. They want a tracking number from 20 months ago. 

I wonder how many people this huge, multinational company is screwing over.

Not inaccessible but ….

As I rode around town this past week , it was hard not to get a bit depressed.

I was off last week, and it was really nice out -- not too hot but really sunny. The sun made the bike trail out of the question, so I spent a lot of time on the streets and sidewalks and grass. 

It's not that my town is particularly inaccessible. I suspect is as good as anywhere. But what passes for accessibility is kind of a joke. I could get anywhere I wanted, provided I was willing:

• To go around poles and trees in the sidewalks.
• To put up with bumps caused by various covers or sidewalk sections that were inexplicably almost an inch below or above the next section.
• To accept sidewalks that dropped off sharply on the side or curb cuts that were pretty close to 90 degree angles when compared to the sidewalk next to them.
• To accept a bumpy ride to get through the parks because the paths are either packed gravel, packed dirt or nonexistent. Not to mention, my city loves cobblestones.

Mom suggested that I tell the city to help them make things more accessible. I have two thoughts on this. As I said before, I do not think my city is particularly inaccessible. So I imagine they honestly don't care.

In the "they don't care" vein, shortly after I got Fame, a TV reporter did a story on me trying to reached the bike trail from my house. I cannot reach the cross walk button and there is a utility pole in the middle of the sidewalk. They told the reporter they would fix the issue. They didn't.

Saved

 One of my uncles almost never wore shorts. He did work outdoors, but even when he got home, he didn't put on shorts. I never understood this because he had an awesome tattoo on his calf. He died five years ago last week. Still hard to believe.

On my walk today, I went on a repaired sidewalk near the bike trail. The sidewalk was repaired, but the the area next to the sidewalk had not been, meaning there were little gaps on the left and right of the sidewalk.

I accidentally went off on the right, then overcorrected and went farther off the left. They are doing a bunch of work near the place where I was, so I was going to call for a worker or two to come help me. But even before I could say anything, one of the workers started running toward me. He wound up helping me back on the sidewalk no problem.

He looked nothing like my uncle — he was a different ethnicity for one thing — but all I could think of when I saw him running over was my uncle. I have decided that it was because of his long pants. I don't know if he had a cool tattoo though.

No more biff, bam, boom

I canceled my comic book subscription the other day. It's not that it was too expensive. It was an online only subscription so was quite cheap. I just didn't find myself reading comics much. This depresses me. Does it mean I am old? Does it mean I am boring?

Or perhaps most likely, since I was struggling to see the words in the books, It means yet another thing Friedreich's ataxia won't let me do easily.