Teleworking fool

As the year ends, several people in leadership roles have reminded my co-workers and I to beside to fill out our annual telework form. This forced to the forefront of my brain something I have been considering as the pandemic has stretched on. 

I don't think I can go back to the office ... ever.

I was going to tell my boss in a quick little video meeting, but in another meeting that morning I loudly told people something and was asked to email them. I could tell they didn't understand.

So I just emailed my boss. She was fine with it.

I'm not.

But transferring at work is transfer to my left. At home, all transfers are to my right.

Plus, I am farther from the bathroom at work, and I haven't been able to work with a physical therapist since February.

I know I made the right choice. Will I be able to live with it though?

Halfway out of the dark

 Doctor Who Christmas specials are, well. special.

Which is why I subscribed to HBO Max last night.

There are other reasons (Wonder Woman 1984), but the Christmas specials are the main one. 

And of them, 2010's A Christmas Carol just gives me goosebumps throughout, so my niece and I watched it last night.

It did not disappoint.

Of all the top moments, a voiceover near the beginning always gets me:

On every world, wherever people are, in the deepest part of the winter, at the exact mid-point, everybody stops and turns and hugs. As if to say, “Well done. Well done, everyone! We're halfway out of the dark.” Back on Earth we call this Christmas.

I rarely feel "halfway out of the dark." But I'd like to.

Christmas miracles

What, you are no doubt thinking, is a snowman doing in the Nativity in Bethlehem? Buffy the Vampire Slayer? Sure. But a snowman? I think not.

This is a special snowman. He not only spent years at the nation’s newspaper, so reminds me of my heady days there, but also is made of Christmas snow, which as we learned in Frosty the Snowman, turns into snow whenever a “December wind kisses it.” Santa never says it has to be a cold December wind.

Incidentally, Frosty lives for others, sacrifices himself and is born again, a very appropriate theme for Christmas.

Moving from right to left, VenomFang was a bad dragon. He laid waste to the hometown of my Dungeons & Dragons character, Bud the human fighter, in a campaign by a nephew. He got his comeuppance, though. My brother, several nieces and I “whacked it in two and fixed its wagon.” One of those nieces made me a little VenomFang.

When my siblings and I were young, we had Breakfast Buddies, these little Winnie the Pooh figures that went on a spoon to keep you company as you ate your cereal. I don’t actually remember using them that much, but I use the 21st century version that my nephew gave me all the time. Spider-Man sits on my computer monitor.

Also, like Frosty, Spidey sacrifices himself and is reborn. Actually, most of the superheroes in the Nativity are.

Rocket Raccoon is not one of them. At least as far as I know. I have not read a ton of Guardians of the Galaxy. He is just around to shoot up any bad guys.

Groot (well, Baby Groot here) is. Another gift from my niece, Groot will fit in in a manger. He’d probably enjoy being a shepherd.

Daredevil is another martyr. But I thought the story was so dumb, I stopped reading the book for a while. As a HeroClix figure, he is small but mighty.

Then you have Santa and the Big Three.

In the Nativity, there needs to be someone in a wheelchair. You can never wrong with Professor X. Like Rocket I am not aware of any martyrdom, but he has died a lot. I havae just not read enough X-men. With Cerebro, he could let could let everyone everywhere know about the birth, no need for the lucky few to hear angels on high.

Then there’s Buffy the Vampire Slayer, a true martyr. She’ll fight of any forces of darkness the Big Three face — Herod, I’m looking at you.

What's next

My alarm woke me up yesterday, and I noticed a light on out in the living room.

I am usually the only one up, but whatever, I thought.

As Fame was getting my shoes, my niece poked hiker head in my room and asked if I needed help or something.

I said no but then realized I needed socks because my feet were outside the covers for most of the night and quite cold. She did, then Fame was handing her my shoes, but putting those on meant she had to put on my shorts first. So she did.

"What's next," she would ask, so she helped me transfer and pull up my shorts.

"See, I can do this," she said before she took Fame out and fed her.

Not that I ever doubted it.

It's a responsibility-free life

I love It's a Wonderful Life.

Jimmy Stewart's great. Donna Reed is almost as awesome as Buffy. And the theme "no man is a failure who has friends!" How can you not get chills when all his friends show up and start giving George money? I'm getting goosebumps just thinking about it.

But ....

I love it despite its flaws, chief among them is that without George everyone is a massive jerk. What happened to personal responsibility?

• Mary becomes an old maid, which would never happen because she is Donna Reed.
• Violet seems to have become a prostitute.
• Bert the cop? Gun-happy a$$.
• Ernie's wife leaves him.
• Gower goes to prison -- OK.
• I accept that Harry dies without George, but every man on the transport? Did the military not put another pilot in Harry's place?
• Why can no one besides George stand up to Potter? But OK, maybe everyone lost all their money in the Depression except Potter.

My biggest problem is Nick the bartender. He seems to be running a mob bar, threatens customers with physical harm and becomes evil.

One person should not be the catalyst for so many people just not being jerks.

Now that I got that off my chest, you know what I am watching now.

Siri, stop embarrassing me

 My niece has a friend who lived with us last year, and I put her in my phone because she did her schooling online so she was around if needed.

Very early in the morning on Friday, like 5, I needed to call my sister.

I said, "Siri, call [my sister]."

What Siri heard was "call my niece's friend," whose name starts and ends with the same sounds as my sister's. So it did.

There is a moment after the call starts when you can hand up with no connection, and I did try. But my finger would not hit the hangup button.

Then, the ringing stopped and a voice came on. Voicemail fortunately. I hung up.

I asked my niece over the weekend her friend said anything to her about it. I got out the words, "Did [friend's name] ..." before she started laughing.

I am deleting that contact.

Help, I'm gonna die

When Milhouse's remote control airplane crashes on the roof of a mysterious house, Bart climbs up to get it. He slips and grabs onto a gutter, then a caterpillar steps on Bart's fingers, tickling him and making him lose his grip. "Help," he laughs, "I'm gonna die."

This was more or less me last night, though I wasn't falling off a roof but a bed.

My right leg started jumping, and as I often do, I sat up in bed. I hold onto my chair fo balance and just sit for a little. It works.

Last night, though, holding the chair didn't help me keep my balance. It actually hurt me because when I started falling back, I continued to hold on. The result was that my head was pulled off the bed. I was also holding on so I could not activate my watch to call for help.

Fame was an option, but unless people are up hearing her a floor away is dicey.

So I let go of my chair and slid a little farther off the bed. I was laughing, too, which sent me even farther, but with a free hand I activated Siri on my watch. Perhaps because of my positioning, it didn't understand who I wanted to call. Meanwhile, I kept sliding farther and farther.

At this point, I started asking Fam to bark. She did but was so excited by the prospect of company that she was barking with a stuffed animal in her mouth.

At this point, I was on the floor so I called my sister without Siri. But my sister heard Fame and shoed up to help before the call went through.

Help, Buffy

 As I was finishing a critical episode of season 2 of Buffy the Vampire Slayer (who am I kidding? In that season they are all critical), I noticed that my left foot was so cold it ached. This after two hours under the covers.

Then it started jumping.

I eventually had to call my sister to put socks and foot warmers on me.    

This, I think, illustrates a bigger problem with taking a sleeping pill than the previous issue.

If it works,  a big if, shouldn't we be solving the things that keep me awake? The sleep mask drying my mouth or just being uncomfortable,  restless and cold legs. The use of a pill seems like just knocking myself out instead of trying to fix  me.

Buffy never went for that kind of laziness.

Fame cries wolf

I knew I was in trouble as soon as Fame barked.

I was off today. My sister was working. My niece and nephew were upstairs tele-learning. My brother-in-law was around but wasn't not available at the time I am about to describe. 

Because it was raining, Fame and I couldn't go out to play. That didn't stop her from stealing one of the house dogs balls when we were headed back to my room.

So I started tossing her the ball. Apparently, I was not fast enough because she barked, just once.

But then I heard thumping upstairs and someone running down the stairs, and my niece appeared in the doorway.

Whoops. 

I'd rather be up late

I am OK with doctors not knowing Friedreich's ataxia. It is not a common disease, so explaining it is all right with me.

For instance, this new sleep doctor I saw last wouldn't even know why I was in a chair. Well, unless he read my chart.

He prescribed a sleep aid, and I explained some of my concerns. He said not to worry because it has a very short half life. I told him I was going to check with my neurologist. I also decided to ask my personal care physician. But before I did that, I decided to find a drug information form on the drug: Ambien.

And I learned, from a page on a government website, that ... Ambien (at least the generic) can cause ataxia in non-disabled people the day after taking it. Really.

[zolpidem can cause] prolonged reaction time, problems with coordination the day after you take it, and may increase the risk that you could fall.

I won't be taking it. 

I want to be like Lenny Dykstra

Lenny Dykstra, we are told in the book Moneyball, was built emotionally to play baseball, as opposed to friend and star of the book Billy Beane, who was built physically but not emotionally to play baseball.

The book recounts a story of the two watching a pitcher warm up.

Who is that, Dykstra asks.

Steve Carlton, one of the best, Beane says.

I'll get a hit off him, Dykstra says.

Beane was already thinking about Carlton's nasty pitches, working about the future.

This is paraphrased to clean it up.

I never liked Dykstra, but apparently his mindset is what I need.

What a feeling

I googled leg warmers a few weeks ago.

I am not a huge Flashdance fan. In fact, I have never seen it.

I just decided I needed to wear shorts year-round, and I would even  wear goofy leg warmers if needed.

Instead, I found a newer iteration, more normal-looking, that won't get me laughed out of the house - although if I were, my legs would be warm.

The ones I bought look like gartered stockings if gartered stockings were opaque and stopped at the ankle and instead of a garter belt had elastic around the top.

The only problem is when my shorts bunch up, then you see the tops of the leggings and I look ridiculous. But I am warm.

Fatigued

Not very good at "powering through."

I read an article last week where the author talked about being scared to stop looking at her phone lest more bad news happen.

She is clearly more optimistic than I am. I know no phone is going to protect me from bad news. If it isn't the pandemic, it's lies or hatred or anger or fear. 

Everything these days leads to the dark side.

Add to those "listening fatigue."

I knew about this intuitively, but this week got an email from my caption phone at work explaining why meetings are so tiring. I have to use part of my brain to hear, part to watch people and part to read the captions. That's assuming the captions are accurate and not X-rated gibberish, which oddly they often are. That means another part of my brain has to figure out what in the name of God,  assuming  sexual harassment isn't the goal, the speaker is saying.

No wonder all I want to do is sleep for a million years.

The latest

 Between the pandemic and all the other crap the nation faces, every time I want to power through and force myself to write, something new happens that leaves me wanting to sleep, play on my computer,read comic books or get in bed.

Last week, it was a neighbor calling the police on Fame. Really.

Because I need her to bark if I fall, I don't discourage barking when we play. The neighbor took exception.

The police suggested he talk to us first, so he did, I guess. He told us he called the police. I suspect the police were thinking he'd talk to us to negotiate.

Sigh.

Back to my baseball game.

A visit

 A friend came over today, and we had a socially distanced chat in the backyard.

Not as easy as it sounds when you consider that

1. I am pretty hard of hearing.
2. My hearing aid microphone didn't work.
3. Neither did my captioning app, too far away.
4. And everyone cuts the lawn on Sunday morning, filling the neighborhood with noise.

But it was pretty great, depressing that this is what the future looks like but great.

Christmas comes early for Matty

Over the past month or so, I seem to be getting the hang of the sleep mask (only took a year). 

But while I can wear it more and more, it never fits right, so its effectiveness is not that great. My mouth often dries out, too, because the machine kicks up the pressure when the fit is bad to try to do its job.

It fits OK when I put it on, but I move when asleep (shocker).

I saw my sleep tech virtually last week, and she sent me a new mask to try for Christmas, she said. I was hoping it would be the and were. I am not giving up yet, but it hasn't been better.

I am still struggling. It is a challenge to write or do anything really. I just told a friend I need to just "power through it because I am not expecting a change soon."Ugh.

Why I hate people -- reason 6,024

Twenty days ago, Mom and I went for our usual lunchtime walk.

As we passed the front of our house, across the street was a dog Fame was eager to meet. The owner was 20 feet away at the end of an extendable leash, so I let Fame say hi.

I was watching the dogs greet each other when all of a sudden I saw a human arm reaching in to pat Fame. 

Um, social distancing? Especially for someone in a wheelchair. And it is not like he was masked up, either.

Moron.

I got cocky

It took less than a week.

After my neurologist eased my Covid worries by telling me I wasn't extra at-risk because of Friedreich's ataxia, my primary care doctor ratcheted them back up, probably higher than before.

I emailed her to ask about a handful of tests and appointments I have let slide because of the pandemic. I also mentioned my neurologist's assessment.

She replied with a very helpful list, at least until the last line. which was "I would definitely say that you are at significant risk of being quite ill if you got COVID-19.
" Crap.

Back to my bubble, I guess, though she did think I should see one doctor now. Double crap.

Another mask issue

 Over the weekend, Mom cut my hair. She does it regularly every month or so, but this time she saved me from the latest horror of sleep masks: mask-head.

I had some luck last week in wearing the mask and discovered that unless your hair is quite short, you better like wearing a hat.

Can Matty be smart?

 For the first time in the five years I have been seeing the neurologist at CHOP, I was disappointed by the visit. 

It wasn't that it was bad or that he said I was doomed. Actually, the problem is he said the opposite.

Since March, I have more or less isolated myself (as much as possible in a house with four people, parents next door and needing help daily. So not much thankfully). I thought I had to, given my Friedreich's ataxia.

Not so, he said.

Don't isolate yourself, he said. Just be smart; do what you need to do. 

 That's the problem: Do I need to get my teeth cleaned, get a new prescription for my glasses, get an echocardiogram or a colonoscopy? What about a physical? Should I start up my physical therapy again?

It's easier to isolate.

I tried

 My EDITOR wants something SWEET for the CHRISTMAS EVE edition -- something about LITTLE GIRLS and PUPPIES. And here I am at BELLEVUE.

Ben Urich in the "Born Again" arc of Daredevil

This line has been on my mind recently, not because Ben is awesome and the arc is my favorite comic event, though they are. I fell the other day as I was pulling my shorts up to use the urinal. I pulled myself right off my chair, actually just off the sitting part. I landed on the footplate, which I then peed on.

So to paraphrase Ben: Mom, my sister, numerous relatives, my counselor and probably others want a glass-half-full take on the event -- something about how lucky I am my brother-in-law and niece were there to pickle up and Mom to help me change. And here I am writing bitterly.

I do not, for the record, consider myself a glass-half-empty person exactly, as much a pragmatist. And the pragmatist was particularly depressed by the fall for several reasons:

• I did everything right and still failed. I did not need to use the urinal urgently. I was not taking risks,  other than the big one that come with getting out of bed every day with Friedreich's ataxia.
• My niece should not have to deal with picking up her uncle who is sitting in his own pee. (Several parantheicrals: I purposely made the "who" clause restrictive because sadly I am OK with my little niece picking me up outside of "pee events." I have made my peace with my brother-in-law picking me up.  Also, better sitting in my own pee than someone else's.)

Daredevil had his life wrecked by the Kingpin, but he luckily did not have to deal with FA.

Fear: Get used to it

 I have a virtual appointment with my neurologist in a  few weeks. 

I had sent him a list of FA updates for me and question or two because I am not going up to Philadelphia this year. He suggested the virtual appointment.

Nothing on my list is real earth-shattering. I am asking how at-risk of Covid I am, even though a few people I have mentioned this to (including a non-relative) think I am being silly. It's not like your life would change if you weren't, I have been told.

Two reasons come to mind.

If he said I wasn't particularly, maybe I'd be less scared about life.

On a related note, I haven't seen a doctor since the beginning of March. Doctors have always been part of my life. I miss them.

I  am pretty sure I am at-risk, though.

No writing

At first, I wanted to blame my lack of blogging on the pandemic.

It made sense. I often write about interactions, and I haven't had any outside my family, texts and email, and an early visit from some friends.

But I haven't written more than seven posts in a month since 2019. That's depressing.

I suspect it is also a sign that depression grips me. 

Perhaps I need to change things up. We'll see.

I need to be like Jamie Moyer

As I get older, my body fails me more often. I know this is not solely a Friedreich's ataxia thing. 

Your body breaks down, it just does, though I suspect FA hastens the breaks.

Baseball pitchers, for instance, might lose some velocity on their pitches. Good ones adjust, maybe becoming more like Jamie Moyer, who never had velocity but pitched until my age and won 269 games with smarts.

Like Moyer, I have plenty of smarts, and my super-awesome physical therapist has given me even more. 

I don't use it, though.

I know that to transfer safely, heels need to go behind knees. That way you can use your leg muscles then and your knees come unlocked easily.

I can do this with my right leg, but my stupid left foot slides forward when I try.

The upshot is I don't try. I rely on what I have always done:  I set my chair so a wheel blocks my left foot, then I use my arms and right leg to stand and hope I can unlock my left knee.

This transfer -- to my chair -- accounts for the lion's share of my falls.

If I were a pitcher, I'd get pummeled.

The cure for leg spasms

I have multiple insect bites below my shoe line on both feet, which is odd in that I always wear shoes except for in bed and the bites did not appear at night.

The upshot, though, is they itch badly and cause my legs to spasm uncontrollably.

The other night this was happening, and I reached for my phone about midnight to read Facebook in hopes that would relax them.

I saw my wrist was watchless and realized that in the worry about my bites, we had forgotten my phone and watch.

I did have my iPad, so I texted my sister. Nothing. Next I tried my niece. She came down her fears that I'd be in a bloody heap. My nephew was next, but he was another floor away.

After getting my phone, we chatted about this and that, which apparently was just what my legs needed;: They stopped spasming.

Scared

In one of the stories he used to tell at concerts, Bruce Springsteen talks about getting his draft notice:  "We were all so scared," he says. Me, too.

He failed his physical and went on to become a superstar. I am not sure how my terror will play out.

it is not that I am worried I'll get sick and die. I just can't stop thinking that my life is going to be permanently and badly altered by this pandemic.

Maybe that means I'll never make it back to the office, which seems more and more likely as my body gets more used towering from home.

Or I put off seeing a doctor who could help me.

Or maybe in addition toeing bitter, I will be perpetually sad.

Leveling up

When we were in high school, my little sister and I, to put it charitably, did not see eye-to-eye. We're friends now, but she does, on rare occasions, let me have it.

Unlike high school, I usually deserve it now.

For instance, she thinks I wallow and dwell too much on bitterness in this blog and wanted me to write about Dungeons and Dragons, how my nieces and nephews didn't give up on me playing and how she hears me laughing in my room and her daughter laughing in her room when we play.

She's right, but I told her I already wrote about D&D. Also, they can take away my balance, but they'll never take my bitter. Well, unless they return my balance.

But then my nieces and nephew (and brother) showed another level of awesomeness Sunday night.

I had an incident mid-game that took my sister about 15 minutes to clean up. I asked her to tell them I'd be away for a bit. They said, "No worries" and just chatted.

They're so great, my sister, too!

And then there's my stupid sleep mask

The temp and humidity has been acting up, but we finally got it straightened out, so I was thinking this past long weekend would be a good time to get some hours in.

I think I got maybe three hours total.

The first night I fell asleep with it on but woke up a few hours later with my mouth dried out. It seemed to use all the water in its reservoir in those two hours. They were the high point.

The next night, I pulled an attachment that feeds air into the mask out. It goes back easily but not for me. Zero hours.

The third night, my leg started jumping after an hour, so I took the mask off to sit up.

Stupid stupid stupid.

Daredevil isn't the answer

One of my depression busters is reading comic books, but I should know better than to read Daredevil for a pick-me-up, especially a story arc called "No Devils, Only God."

Daredevil kills a thief by accident and is hunted by police. His costumed friends tell him to give up being Daredevil, and he does. He falls apart and asks a nun whether God exists.

Substituting Mom for nun and cares for exists makes the last sentence true for me, too.

The nun tells Daredevil's alter ego, also named Matt, that his struggles aren't unique, that he isn't special.

My struggles aren't special, either, at least by themselves. What makes them sort of unique, however, is that they all expose my limits, which are all related to Friedreich's ataxia. Lots of people have sore shoulders. Not so many have to use those sore shoulders regularly in ways that hurt.

Daredevil's salvation is an affair with a gangster's wife and then  reuniting with an ex. Not sure what the answer for me is.

Fame knows best

Fame is a bit of a loudmouth when released. I think it is having to deal with me all day every day because my first dog was the same. She needs to left off some steam.

Unlike my first dog, though, Fame comes by it through hard work. Sorta.

One of the things I wanted her to do when got her was bark on command easily in case I needed help.

And it was easy to get her to bark, or speak ... for everyone else -- her puppy raiser, the trainer, my brother-in-law.

She just looked at me ... unless of course I had food.

So I worked on it. Success came when she released that barking would bring other people to my room. 

When she realized that, it was all I could do to keep her from barking whenever I sat on the toilet, where I normally fall. She eyes me know like a vulture, just waiting for me to slip    .

Now I have two problems: First, she sometimes barks before I ask her, but it's always after I have fallen. I also have to persuade her to bark before she grabs a stuffed animal when I fall.

You are getting Fame stories because I am struggling. My shoulder was slowly improving, but I re-aggravated it yesterday trying to recover from a fall. My stomach remains problematic. Zoom calls are hard. Work tire me out. My sleep mask is still not easy to wear. Plus, you know, Friedreich's ataxia.

Mean or right or both?

Sometime last month, I had a virtual visit with my awesome physical therapist to see if she could improve my work setup to stop my shoulder from hurting.

One of her ideas, which I took, was getting a half-tray for my chair to keep my right elbow from slipping off the arm rest. she prefaced this recommendation by saying: Now, I know how much you hate assistive devices but ...

Before I could reply and ask her why in the world, my sister, who was acting as translator, said: Oh, he does. They then riffed a bit about it and laughed.

I still have no idea what I opposed.

For my PT, maybe it was the braces that I didn't want to consider because the braces I had before actually did the opposite of help.

For my sister, perhaps it was the condom catheter, which I didn't (don't) think I could afford because 'd have to hire someone to come in morning and night.

Or maybe it was my reluctance to use my chest strap, which my awesome PT originally advised against.

I decided they were just mean, but now I am not sure.

I was undoing my seatbelt and chest strap the other day, and all these straps and all the effort just made me want to cry and cast aside all assistive crap.

So maybe they're right. But they are definitely mean.

Plus-infinity awesomeness

Last month, most of my nephews and nieces started a Dungeons and Dragons campaign online. My brother and I joined them.

Even though he hears worse than I do, my brother got along OK. He uses a captioning app not available on an iPhone.

I didn't do well.

I had patched my hearing aids into my computer and for some silly reason thought I'd be fine. 

Ten minutes into the first game, I was hopelessly lost, made my apologies, logged off and figured it was another thing Friedreich's ataxia robbed me of.

But they didn't think that.

My brother kept trying to find ways to get me on an Android. One niece talked to her computer geek boyfriend (she said "nerd") about it, and he said use this chat program, which has captioning. The Dungeon master practiced with his girlfriend so the captions would understand him. And they do!

I'm playing D&D tomorrow!

Hard to digest

I have been having stomach issues for two or three weeks. I won't discuss in detail, but I will say they could very well be stress related and I wind up needing to transfer to the toilet more frequently.

The frequency thing  is causing multiple problems, often on the same night, like Thursday.

For one, I fall more often. Not really, not percentage-wise. But because I am doing more transferring, I am slipping more.

On Thursday, my sister and niece pulled me into my chair after I missed the seat on transfer back to my chair.

The other issue is pants-related. When I pull my pants up, I don't always pull them up neatly and properly. This leaves them bunched up and makes using a urinal hard, especially when speed is needed.

A urinal fail was the second problem, although it was made moderately amusing when my niece and nephew answered my call for help to my sister. (I think they just wanted some blog-time.) 

Not a big fan of my stomach.

Master motivator

Fame is a great service dog. When food is involved, she takes her game to another level.

Not always a good level. Sometimes she gets so excited by the prospect of food that she just starts cycling through her commands, hoping she'll get the right one and I'll give her the damn food.

This doesn't surprise me, or probably any dog owner, but her actions this morning did catch me off guard.

My alarm is her alert to hand me my boots, so I can get up and feed her (everything else I do is unimportant). She did her job this morning and went to wait for this slowpoke to get up.

I was getting there, but I have been sleeping quite poorly, so was particularly tired. I knew I had to get up, though, so I said out loud, "You can do it!"

No sooner had I said it then Fame was getting my shoes and putting them on my bed.

"You can do it!" is how I motivate her. It's not food but apparently is pretty good.M

Whoops

It all came to a head last night: three months of grueling telework, a pandemic, racism, fear for my country, a trying stomach.

I was on the back porch during a rain storm, and I just started crying, hard. There was no other reason, I was sure.

Until I was getting ready for bed, and Mom asked if I took my pills the night before.

I am tremendously sad, but the tears weren't an expression of that.

Picking me up, family-style

Everyone in the house was watching Stepbrothers last night. It was nearing the time that Mom comes over to help me shower, so I left to use the bathroom.

I thought about asking my sister to use the lift to put me on the toilet, but I didn't want to interrupt her movie-watching experience.

Instead, I went by myself and promptly fell. I had to have Fame call for help, and the whole family came to help. My sister helped me, my brother-in-law operated the lift, my niece set the leg straps for the lift, and my nephew drove my wheelchair out of the way.

Instead of interrupting one movie-watching experience, I interrupted four. Nice.

Conflicted

I really don't know how I am. 

I am scared but not really sure of what. I don't think I am worried about getting sick.

I desperately want to return to normal but think that it is being done too fast.

I miss my friends but find it a challenge to text or email them.

 

I am tired of staying home but struggle to even walk around the block.

I think everyone should wear masks but on my handful of walks I haven't worn one.

I am just tired but still not sleeping well.

Probably no different from a lot of other people.

It all sucks

I took a 24-page survey today on Friedreich's ataxia.

Like past surveys, it made me feel rotten to read 24 pages of potential symptoms I might have or develop (well, 23. I can't walk so was allowed to skip a page.).,

The survey just listed symptoms, a place to check if you didn't have it and then how much the symptom affected your life.

I found this woefully inadequate. All of the crap severely affects me. If it doesn't, it is because my family is beyond caring, we have workarounds, friends and co-workers are generous. It is not due to any part of this disease being tolerable.

I realize they were trying to determine what we FA'ers have the most trouble with, so they can try to fix that. But I hate it all.

No new normal

I am still struggling to write.

It forces me to think about things I don't want think about. Actually, it forces to think period. My thoughts these days are all fairly dark.

I just don't really see a way for my life to return to normal anytime soon.

Tired

I can't blame this on Covid totally, but I am not sleeping well.

This has been happening for ages, though the current situation probably makes it worse.

Also making  it worse are that I am putting a freaking mask over my mouth and that my legs tend to jump.

Oh, and that I have gone back to long-ish naps.

And I wonder why I am tired?

No more studying me

Everyone in the group that was in the drug study with me got invited back for the next round in late June.

I didn't.

I suppose maybe they just haven't gotten to me yet, although that seems pretty unlikely.

I was on the edge before the pandemic: 17 days away from home, work, Fame?

But I am sure I have no desire to go now.

 Friedreich's ataxia sucks; being dead is worse.

Stupid question

Why does my lower back hurt so, I asked myself today.

Then, one leg buckled when sitting on the toilet, and I crashed down hard onto the seat.

Oh yeah, I thought, that's why.

Then, getting off the toilet, a leg buckled, and I had to get Fame to bark for help.

Oh yeah, I thought, that too.

Then, getting out of bed, I slid off and my brother-in-law had to help me up.

Oh yeah, I thought, that too.

Maybe a better question would be:Why am I not one big bruise?

Not running with the wind

I recently remembered a song from my youth that had a refrain that went:
Living on the edge. Running with the wind. Soaring to the heights on an eagle's wing.

I thought of it because I had told a friend that these days I always felt on edge.

I am fairly certain this is not what Jim Capaldi meant.

And who knows when it will end?

I told my boss that I am not sure when I'll be back in the office, given that even if we social distance, I can't not fall.

Really living on the edge would be going to the office.

Falling to pieces

I promise I am not a threat to myself or others. I am, however, fast falling to pieces.

I sleep poorly these days, which makes wearing a sleep mask awful challenging. Let night, as I tried to fall asleep about 1, I just started crying.

Earlier this week, I gave up trying to play Dungeons & Dragons online with relatives because I couldn't hear. Mostly, I felt like I was letting down my nieces and nephews.

It is not like they don't know about the limitations of Friedreich's ataxia -- the niece I live with came in as I was  getting ready for a shower. I'm beyond that, she told Mom about me getting undressed.

It's just I don't like them to see the limitations.

Work is hard.

And I'm scared.

Future's not so bright

One of my jobs these days is to maintain pages of Covid-19 pages on our Intranet. I don't have to find content, just post what I am told to.

Normally, I just post stuff and don't read or watch, but Friday I watched a video I was asked to post on helping be less anxious.

One tip was think about the future.

Maybe I am doing it wrong, but the future is a big part of my anxiety.

For instance, I don't see going back to the office for ages, if ever.

I rely on co-workers if I fall or to get me or Fame water. None of that is possible if we need to contemplate Covid-19: me infecting them or vice versa.

That's assuming I don't die.

Matty named pharaoh

My last post was more than a month ago.

I haven't died and am not sick -- physically.

Things are still happening that I want to write about. I'm still cheating death and the recipient of incredible help.

... but ...

Writing makes me think, and thinking makes  me want to curl up in bed and close my eyes and wait for this situation to be over. Of course, that'll be ages for me if indeed it ever ends. Or maybe my  body becomes too used to teleworking and can't go back to office physically, See what I mean about thinking?

My headshrinker said this was denial (Get it? The king of "da nile" or pharaoh). I totally disagree, but since I haven't seen her in more than a month either, I can't rebut this.

Notice I  don't say "curl up in bed and sleep."

As I know it is for many these days, sleep is elusive for me. But when I can't sleep, my legs tend to start jumping.

Last night is a good example of a story to tell, a brush with death and help.

Because I decided standing up would be dangerous, when my left leg started to jump last night, I tried to sit up in bed. Emphasis on tried.

I sat up and immediately fell over and not to the left, which means onto the bed, which isn't super-safe. Last night I fell to the right, which meant all that kept me from a tumble was my chair, and it isn't real comfortable to fall into my wheelchair. It was less so because my right arm was trapped under me, and I feared any attempt to free it would send me off the bed.

But I had noticed lights on out in the living room -- maybe my sister or brother in law was still up -- so I had Fame bark. She did, but I didn't hear anyone coming. I was starting to consider my next move when Fame ran to the door, her tell that someone is coming.

It was my niece. My nephew was a little behind her.

After learning I was OK but stuck, she offered me her arm and when that didn't work, just pulled me up.

There was much laughter throughout, especially when she told me she was mostly worried I'd be dead.

I guess I shouldn't worry when I have such people watching out for me. But I'm not turning in my pharaoh's robes.

To my rescue?

Nurse Gertrude visited yesterday, and that ends my participation in the drug study. I am now allowed to smoke tobacco or marijuana.

Instead, I  aim starting baclofen in hopes it stops my legs from jumping and doesn't make me more inclined to fall. (I use tightness to hold my muscles in place when transferring, and baclofen weakend tightness.)

My jumpy legs are really bad these days. I am desperate.

Matty Hughes

Less than a week after telling my head-shrinker I wasn't freaking out about the coronavirus, I was emailing my boss to tell her I need to telework til they get a handle on it.

A few days after that, I emailed my swimming instructor to say I wouldn't be coming for a while.

I don't think I am paranoid about it exactly. Nor do I think I am particularly high risk, even though my heart and lungs are not my most awesome features.

The chief problem is my inability to stay away from other people's germs. I need help, whether it is taking my water bottle out of my bag, filling my water bottle or picking me up after a fall. If I touch a cootie-filled grab bar with my right hand, the cooties spread to my wheelchair controller or any other part of the chair I touch. Then, even if I wash my hands, the cooties are still on my chair. I'd have to carry wipes around and use them liberally, and even then I just don't think it would work. At least at home, they're my cooties.

Teleworking also saves my work neighbors from worrying as I have been known to cough.

I haven't gone total recluse yet, still showering, shaving, doing my nails.

Choke or hurt

My head-shrinker and I were discussing how things in my life appear to be one step up, one step back.

That was her idea. I didn't tell her it is more like one step, 437 steps back.

The latest is my shoulder/neck pain.  It is OK if I keep my head up, but if I do that I choke. I need to tuck my chin to swallow.

Do I choke or hurt?

Suck that, depression

This morning I got on the toilet as I normally do, and instead of transferring off when I finished, debated just sitting on it all day.

I'm not sick or anything. I think this thought, which is not new, is related to three issues.

• First and probably only counting for 5%, I have evacuation issues, which if I stay on the toilet are eliminated.
• Second and maybe 15%, transferring back to my chair is a challenge. Most of my falls come during this transfer.
• But the lion's share is related to depression. Not awful but niggling. Lots of stuff: my disease, the world, the cold, evil, my shoulder ... Cold is a biggie these days.

Instead, I got dressed and took Fame for  a walk in the miserable cold. 

Gray?

My hearing aids were under warranty through sometime in December.

It should not surprise me, then, that they stopped pairing with my phone this month (it does surprise me, but is shouldn't).

Even bigger shocks were in store.

First, the company said the hearing aids would cost me zero out of pocket. Then when I made the appointment, the zero became substantially more. But I need hearing aids.

Then today I went to pick out new hearing aids, and we got to the color. I picked out tan and showed the audiologist.

No, he said, you want something that matches your hair, and he showed me gray or silver.

I'm OK

When I cough and the force causes me to bend over at the waist, no one bothers at home.

I'm not criticizing. I am just saying. Everyone, Fame included, knows I wear my seatbelt and such a cough is no big deal.

Not so at the clinic.

I coughed like that when most of the patients and aides were in the open room watching TV.

The mom who was drowsing in a recliner next to me jerked the recliner down and was halfway out of it to help me. The other mom was getting out of her chair, so was another aide. And a nurse saw and was on her way.

The people with FA were like WHATEVER.

Another big question

The next step of the study -- if I want to take part -- is a 17-day trial in a few months that features multiple, ascending doses of the drug.

I knew I could survive a week; 17 would be harder.

I don't like missing that much work -- it isn't that I don't have the leave. I just don't like not working for that long.

I don't like being away from Fame that long.

To say nothing of missing my routine.

But how can I not take part? How can I not try as hard as possible to take control of my uncontrollable body?

Studied

The study runs through early March, but I suspect I won't be getting superpowers.

It is probably for the best.

I would be sad if I did Hulk out and started smashing stuff, hurting people the clinic -- they were all really kind.

Or I'd be kidnapped by shady government execs who wear black suits and smoke.

I came home for the long weekend, and heard back tomorrow for a checkup Wednesday. That is the last thing in New Jersey. A local nurse does a check in March, then I am done.

Despite the no powers thing, and Bruce Springsteen not visiting, I reckon it was a good. It was interesting to be with strangers with Friedreich's ataxia and be one of the older and worse off ones. It was a mostly painless. I hope I helped the research.

Of course, I still have FA.

it's gotta be the gloves

When I was hospitalized a few years  ago, one nurse  brought me my toothbrush, toothpaste  and  a dish to spit in without glove. I loved that.

I told a friend who was horrified, pointing out that gloves are for my benefit.

He was right, of course, but having someone touch me and my stuff without a thin layer of latex meant the world to me then and I suspect still.

I think that is why I am mostly unafraid of a medical company putting a mostly untested drug in my system as they are doing Thursday. But the prospect of an attendant I am not related to helping me fills me with dread.

But that's why I bought gloves.

Stuck

My sister has asked me to just call her if I need to stand up to stop m legs from jumping. She reasons, reasonably, that it's easier to help me stand than to use the lift to pick me up.

I listened for a while, but lately, since my legs have gotten quite bad, I hav been standing up without her.

In my defense, I am usually OK ... until I slid off the bed on Saturday night.

She picked me up and didn't yell at me though she might have been too tired. She did leave my chair, which I use to stand, away from my bed.

I'm in

A friend who works in drug trials did not say definitely that I would not get superpowers as a result of participation in the drug trial (I got in).

Really, she just said it wouldn't hurt me. But again she didn't say it would provide powers.

I know that physically and emotionally I will be far from alone in the trial. I am still nervous.

Screened

Well, I survived my screening for the drug trial. I haven't been accepted yet -- waiting on lab work -- but I survived. (So did my sister who came with me.)

I have decided I don't like hotels. For starters, the one we were in put us in an accessible room on the fifth floor and didn't know what we'd do in the event of a fire. My sister pointed this silliness out and got a first-floor room, but it  wasn't as accessible and we lost a bed. That was fine because hotel beds are so high I can't get into them. I slept on the couch, well I laid on the couch and worried through the night.

It was a short night because I had to be at the clinic for screening at 7.

After paperwork, I faced the dreaded nine-hole peg test, which seems simple but is hellish. All you do is put nine pegs in nine holes one at a time with one hand, then take them out of the hole. I HATE IT!

More tests and a medical history, vitals, bloodwork, etc. I learned there'll be a chance I do all this and get a placebo, but if it works I think I'd get to do the next trial.

It won't be easy.

On trial

My shoulder and neck have been hurting quite badly recently. I suspect it has to do with the arm rests on my chair, but using the computer also hurts. So I haven't except when necessary.

But I wanted to write something today because I leave tomorrow for the drug trial screening.

As I take a second or third look at the requirements, I grow  more pessimistic. I don't know my scores on most of the tests I will undergo Wednesday, but I have a feeling they want people with FA who are better off than I.

I also don't think I'll find out if I got in that day.

SIGH

At least Fame was happy

At my old job, the fire marshal dissuaded us from using an evac chair during fire drills. Just stay in the stairwell till we come and get you, he said. The stairwells are fireproof.

I'd hand off Claren to a friend, and my boss and I just hung out in the stairwell.

It was a brand new building, so maybe that's the difference. The building I am in now doesn't seem super-safe.

That's why this morning when the alarm sounded, two co-workers transferred me to an evac chair, one brought Fame, who doesn't like fire drills, and a fourth held doors.

We found a spot out of the drizzle but not out of the chill. I had my jacket on backward and  my friends kept trying to pull it around me.

We eventually got the all-clear and returned.

Fame might have been the only one happy to be outside. Once she saw I wasn't moving anymore, she was good.

I don't know

On our walk today, all I could say to Fame was "I don't know, Fame" or "What do you think, Famey?"

I was thinking about two questions: Should I stop seeing my headshrinker and what should I do for a personal care attendant  if I get into that drug trial that starts in less than a month (but I won't know if I got in for another week)?

My inability to  answer these questions made me feel rotten.

The Headshrinker

I've not improved since I started chatting with her. Not her fault. I know it's mine. My sister agrees.

But it is nice to talk to someone about my troubles, and  I do sometimes take hr advice.

The PCA

I know I need someone with me during the trial, although I may not use them. If all goes well, I won't. But my life rarely goes well. So how to find one I trust by February 9?

I am working on it. Mom, a brother and sister-in-law are, too.

Good question

On my way around the block today, I ran into a little family with two little girls. One asked Why are you sitting in a chair?

I wanted to answer that I ask God why almost every night, but so far I don't know.

But I didn't think a 5-year-old was ready for such theological issues.

I just told her my legs didn't work right.

I wanna go to work, sorta

In Barry Louis Polisar's I Don't Wanna Go To School, Tommy does not want to go to school. As someone  who missed an average of 25 days a year from about third through eighth grade, I sympathize with Tom.

But (***spoiler alert****) Tommy is the principal.

I thought of the tune as I went back to the office for the first time since December 18.

It wasn't that I didn't want to go -- just the opposite really -- but I was afraid.

What if I fall or this or that?

Maybe I just  shou not take leave.