Wednesday, April 26, 2017

Bitter? Happy?

Mom assures me that I would be happier if I weren't bitter. She says others would, too.

I can't say on others, though I will say I don't think I exude bitterness, certainly not in public. I may give into funks more frequently when I am home, but for the most part when home, I am alone in my room, reading, writing, watching TV or napping.

I am unsure if I would be happier.

I do not expect God to come a-knockin' and say: "I am so sorry for the unfairness present in this world I created. I totally could have done better. And all that stuff about 'ask and it shall be given,' that was just stupid. Surely I am not going to answer every prayer as people want."

However, I do not feel like letting God off the hook either, even if it doesn't matter to him.

I am not alone in hating unfairness. I am not anywhere near the most put-upon person I know. But God has to know that I am not happy with him. And bitterness is a way to show him.

Monday, April 24, 2017


I was reading the remembrances of a woman who was friends with a guy I knew in college. From what I could tell he had cancer, but it didn't just kill him. It took his eyesight and other things.

The woman said that he did not complain about the unfairness of it all, just sought to deal with it.

What, I wondered, is that like?

I'm not sure that I'd want to not be bitter. I mean, I'm not mad about it all day, every day. And I don't talk about fairness to friends a lot, but I suspect most of my friends know.

Thursday, April 20, 2017

Uh ... nevermind

I fell today -- nothing major -- but I am surprisingly disappointed.

I hadn't said anything, but I hadn't fallen in a while, like maybe 10 days.  (I thought it was longer when I started to write this; 10 days is not too impressive.)

Monday, April 17, 2017

What Have I Done to Deserve This?

Once during my career as a Pet Shop Boy (really, I was a boy who worked in a local pet shop), I lost the key to the cash register. I felt sick, not just because it was on an awesome Fender Stratocaster keychain. I know people lose things, but I had betrayed a trust.

I told my boss, who must have seen how bad I felt. His response: He put one arm around my neck, said "OK" and pretended to punch me in the stomach with the other arm.

He then told me it was OK, blah, blah, blah.

Now, close to 30 years later, I feel the same way for losing a remote control to a door and my key card. Worse, their lose was a result of my bad wheelchair driving and the "Unsafe at any speed" issue I had recently pointed out.

I was trying to find the elevator that had binged, so I was driving around with my eyes on the elevator lights when BAM. I hit a wall.

I suspect my stuff fell off my lap then, but I did not notice and it wasn't there when I returned. But I re-walked my trip twice and didn't find it.

I hate being disabled.

The title is a real Pet Shop Boys' song.

Saturday, April 15, 2017


As any Catholic school veteran, Holy Week makes me think. It does not make me think good things, though.

How could God allow that to happen to his son?

What hope to any of us have in light of that? Maybe we'll be fine when we die, but we need help now.

Why are those of us who suffer told that one day (in some vague distant future) we'll be happy?

Why do we have to rely on other people, not an all-powerful God who supposedly loves us enough to  sacrifice his own son, which leads back to the first question?

Monday, April 10, 2017

Unsafe at any speed

I realized today that if I go slow enough to maneuver through doors and elevators, the doors and elevators close on me. But if I drive fast enough to get through, I crash into the doorframe.

Other  than mandating super wide doors, I am not sure of my options.

Friday, April 7, 2017

The Spirit lives on

It's a sign of something, not sure what, but I was sure I  wrote  about the Spirit story "10 minutes," which is tagged "What's 10 minutes in a man's life?" In the story, a guy's bad choices over 10 minutes kill him.  It's pretty powerful, especially because the Spirit is only in a few panels at the end. The rest is just the guy's life crumbling. The answer to the tag line then is "a lot."

I was thinking of a sequel: "What's one inch in a doorway's width?

In it, someone puts a trashcan so it sticks into a doorway very slightly. But it winds up rendering the way impassable for someone in a wheelchair.

Tuesday, April 4, 2017

Nothing normal

Every so often, I pretend my body is normal. It never ends well.

On Monday I woke up at 6:05 a.m. and went to the bathroom. Then I closed my eyes till my alarm went off 15 minutes later, got dressed, got up, took Fame out  and fed her, and then started to brush my teeth.

As I started, I got a tiny indication that my bladder might need further emptying. "Surely," I said to myself, "that can't be. And why are you calling yourself Shirley?"

So I kept up the tooth brushing ... until the tiny indication became a surging river at which point it was all over. My sister was called. Things were changed. Unfortunately, my body was not one of those things.

Wednesday, March 29, 2017

No rest for the weary

For the past year or so, I have made my sister come help me whenever I have to get up in the middle of the night.

Now, some of it has been legit -- like when I had a concussion or dizzy spells. But  honestly, I am not sure I am not just being lazy. I mean 99% of the time, I am fine. OK, maybe like 86%, but still a solid majority.

I tell myself better to get help and not need it than the other way around, but I worry I am taking the easy way out and disturbing my sister, who has better things to do.

Monday, March 27, 2017

Fame needs her motivation

I taught Fame a new skill, and I am pretty tickled.

She pushes my wheelchair footplate out of the way when I say "foot."

It is really handy. I am also proud (of her; I didn't do anything) because pushing vertically is not something she was trained to do.

Because of the newness, I encourage her a lot.

The problem is I use this command most frequently in the bathroom, so today I was cheering her on and heralding her success. Then I noticed someone in the next stall.

Saturday, March 25, 2017

I can't breathe

Blowing  out the candles on my birthday cake has been kind of a joke for years. I have no  aim with say breath.

My PT was not laughing when I mentioned this to her. She had just told me she "didn't love" how my ribcage flairs out at the bottom. This is how she says something needs fixing.

She was telling me that I am not breathing properly when I told her about the candles.

She got a piece of paper, and told me to blow into it and make it move.

I couldn't do it. Awesome. Another problem.

Needless to say, I am working on my breathing.

Thursday, March 23, 2017

I hate cold, part bajillion

I telework Tuesday and Thursday, so I need to bring my computer home most days. I put the bag strap around my neck and the bag on my lap.

When I have to wear my big coat, I can't see my feet, so I don't know if they fall off my footplate. Like on Wednesday.

My left foot fell off as I exited the elevator in the morning. It really got wedged in between the footplate and the wheel, and I couldn't free it.

I eventually had to ask a stranger on the elevator to lift my foot up. She did, but grrr.

Tuesday, March 21, 2017

Dizzy no more

My plan for today was to start calling amusement parks and find a tilt-a-whirl. After yesterday's repositioning effort at my physical therapist's to fix my dizziness, I figured a tilt-a-whirl would do about the same.

But I woke up today not dizzy! Man, those PTs are miracle workers. (I say those because my normal PT was not even available, but her co-workers helped.)

It took two of the co-workers. First, I laid down on a table with my head off the end. Then, one PT held my head and another rotated my body. They did this twice.

I may have been a wee bit skeptical at first. Immediately afterward, I was a little off. But one of the PTs said my eyes were less jumpy the second time, and I didn't get as dizzy on the second rotation.

The only problem is I kind of wanted to find a tilt-a-whirl and have my shirt get caught.      

Friday, March 17, 2017

I don't have a concussion!

That's the good news.

The dizziness I am experiencing, though, is worse than when I was concussed.

I went to the doctor yesterday, and the PA diagnosed an inner ear problem. He had me take Sudafed and Flonase, and said it'll clear up in a few days or a few weeks.

Needless to say I am teleworking till the spells, when I change positions or move my head, are gone.

The best to explain the symptoms is to recall going to Redskins game at RFK. We went in a bus, and all the buses parked in a row next to one another. After the game, sometimes the bus next to us left first, and if you were looking out the window, it could get ugly. You knew you weren't moving, but out the window, things were moving. It was very disconcerting. And that is how I feel when I lie down: I know things aren't moving, but they feel like it.

And I didn't even get to watch my once-favorite team beat up on some losers, like the Giants.

Saturday, March 11, 2017

TV doesn't hurt

I had been writing a post in my head for most of the day, then I fell this evening and I no longer wanted to write that post, or anything really.

I need spring and its warmth, but it's more than that.

I feel like I am getting worse balance-wise. I am fairly sure I am not really, or at least not unexpectedly worse.

But something is more wrong than usual. Who knows? Maybe I am just looking for an excuse to watch TV.

Thursday, March 9, 2017

My toys

My new toy may be paying off.

It's a microphone that sends the sounds it picks up to my hearing aids. I use it to watch TV mostly. Meetings have been so-so. But last night I went to dinner at a crazy busy restaurant. My two friends kindly passed the microphone back and forth, and I actually kept up.

It wasn't perfect. But I followed 85 percent of the conversation. No batarang but I'll take it.

Saturday, March 4, 2017

No problem

My work sister has grown so blasé about putting in my hearing aids or putting them back in place that yesterday she didn't even bother getting off the phone when she saw the hearing aid hanging at an odd angle. She just motioned me over, fixed it and kept talking.

I reckon that I am pretty lucky.

Thursday, March 2, 2017

Seeing stars

As I recently pointed out, there is nothing good about FA. But I just thought of something: Because of    FA, I now understand why Wile E. Coyote sees stars when he falls off cliffs or gets hit with anvils. (Note to Mom: Nothing happened.)

Before the FA set in, I figured you saw stars.

It wasn't until FA, when I started falling and slamming my head into tables, that I knew what the stars look like. They also don't circle your head,  at least mine don't. Mine just float in front of my face.

Thanks FA.

Sunday, February 26, 2017

This is why I was worried about my sister and PT meeting

I cough -- a lot. Air and liquid down the wrong pipe. Anything.

My point is I rarely stop what I am doing because of a cough. If I did, I'd get nothing done.  If I did, I'd get nothing done.

I know most people disagree.

My swimming teacher makes me take an extra cough after I swallow water to make sure my pipes are clear.

Yesterday at physical therapy, I was reclining in my wheelchair when I coughed moderately, nothing awful. So I continued reclining.

My PT was sitting next to me and says, "It's probably not a good idea to recline when you are coughing."

This made me laugh, which caused me to cough all the more, because as I told her, it sounded just like something my sister would say. That's why I was leery of their meeting a while back.

I did sort of lie, though. My sister would say, "It's probably not a good idea to recline when you are choking."

Saturday, February 25, 2017

Boys Night In

Mom and Dad are away at a retreat. My sister and niece are at a hockey tournament in Buffalo. This leaves my brother-in-law and nephew and me.

I needed to shower last night, but my brother-in-law had to coach a hockey game until 10.

Up to the PCA (personal care assistant) plate steps my 11-year-old nephew.

I made it to bed successfully so I got to say he hit a home run. Any issues -- like me not asking him to take my shoes off -- are on me.

I survived. And he only made one comment about my towel slipping off.

Tuesday, February 21, 2017


A little over a year ago, while up in New York getting Fame, I fell. It was the beginning of a several months-long battle with a concussion. 

Trying for a repeat over the weekend,  I fell in Mom and Dad's house and whacked my forehead on a grab-bar.

My head hurt, my neck hurt, I hurt.  But no dizziness! 

Friday, February 17, 2017

Not built for speed

I have touched on this before, I believe, but twice this week  I have been reminded how frustrating it is to be late but unable to do anything.

Both times involved me putting on boxer in the morning. The first time I spent five minutes putting them on because several times I put the wrong leg through the leg hole i started with. The second time was more boring, but the result was the same: I was late.

When I am late, there is nothing I can do. I can't kick it up a notch -- the body doesn't do that. I can't skip  something -- I am already at bare-bones, must-do tasks, like brushing teeth.

My option is lateness, which is frustrating.

Tuesday, February 14, 2017

Nothing good

My nephew would say the parking, but my physical therapist was quite surprised to hear me say "a few things are made better by Friedreich's ataxia."

Like what, she asked.

I had to explain that what I said was "few things are made better by Friedreich's ataxia," meaning nothing is. It totally sucks, to be clear.

We did have a nice little laugh.

Sunday, February 12, 2017

Lighting up Falls Church like a flame

Today is my first anniversary with Fame.

We have not figured out how to fly yet, but she picks up an awful lot pretty easily. The limit really seems to be my imagination.

Lately, I taught her to put down the footplate on my chair. I am still pretty tickled by the ease with which she picked it up and how helpful it is to me.

I haven't figured out how to teach her to put the footplate up. See? Imagination.

No  matter when, she is always up for any command I give (except  speak. She does that if I have treats or if she thinks I really needs it.)

In a year with me, I don't think I have seen her not wag her tail when I ask something of her.

These lines from the song struck me but I am not sure who is who: I got more in me, and you can set it free

Friday, February 10, 2017

My dreams are made of this

I have been sleeping poorly the past week. I called in sick Tuesday because I was up most off the night. My legs weren't bad; I wasn't sick; I just couldn't sleep soundly.

To illustrate my unsound sleep, my plan last night was to detail my insane dream of Tuesday night.

I was not disabled and seemed to live in a penthouse with lots of windows and skylights. It seemed to be in like North Korea or some tight regime where you needed your ID everywhere.  Maybe I have just been watching too much dystopian TV, and it was America taken over by  aliens.

I worked as a journalist, and although you needed an ID to get in, they let my oldest sister in when I told them she was with me. She seemed to know people there, and was telling which of the strange foods in the cafeteria to order.

The regime also had a thing for baseball, and apparently had scoped out my penthouse because I  was told they liked some of my baseball stuff.

And there was a woman with eyes like Lady Gaga at the Super Bowl. It turned out she was wearing glasses that gave her the glitter look. But then she took off the glasses and the glitter was still there.

Anyway, my plan was to detail all this last night.

Instead, as I sat down to dinner, I coughed and sent my dinner into my lap. Then later at dinner, I coughed, slamming my head into the table.

Thus chastened of any such work, I watched TV.

Sunday, February 5, 2017

The tuck rule forgotten

Last night as I was going to bed, I had to use the toilet

I got my pants down but not a requisite body part. As such, I needed to change my pants before  I went to bed. No problem. I wouldn't even need to call anybody. I just got back in my chair with my pants down and grabbed some boxers to put on when I got in bed.

Before I got in bed, I took off my sweatshirt.

Unfortunately, my T-shirt came off, too, and I didn't feel like putting it back on.

Then when I got in bed and took my pants off, I knocked the clean boxers off.

So I went to bed without a stitch of clothes on.

Friday, February 3, 2017

Lights on

My latest concession to Friedreich's ataxia is the bathroom light:  I am leaving it on when I go to bed.'

I just cannot reach my glasses, the light switch and the urinal when I need them. At least not as fast as   needed.

I hate concessions.

My eldest sister once told me everyone makes concessions as they age. This is true. But I have already conceded so much. I feel like I am a concession or two away from lying in bed 24 hours a day, which sounds appealing right now but is probably not that cool.

Tuesday, January 31, 2017

Fallen again

OK, instead of an old lady in the shower; think of Matty in bed.

Last night, I put my Uggs right by the bed, but apparently I misjudged.

I went to grab them this morning, and I felt myself roll out of bed. Well, the top part of me anyway. My legs got all tangled up with my chair and stayed on the bed.

The problem was I was using my arms to hold my top part up, so I couldn't access Siri on my watch. I actually got Fame to bark -- I think she knows when I am in trouble. But that didn't wake anyone. Not  real surprising because we have soundproofing.

I just kept squirming and eventually supported my top with my head, activated Siri and called my sister, who of course helped me up.

I think the old lady's gadget may be a better answer.

Sunday, January 29, 2017

Help, I need somebody damnit

I went to a gathering today that required dressing up. This required help from Mom, Dad, my sister and brother-in-law.

On Friday night, I had to call my sister at 4 a.m. to help me after an ataxia-caused incident that forced me to change clothes. I say "ataxia-caused" because it had nothing to do with other problems -- it was just clumsiness.

On Saturday morning at 7, when I saw Dad, who was feeding Fame so I didn't have to get up and potentially fall, I asked him to send up Mom at 7:30 so I could take a shower even though she had helped me take one the night before.

And a few nights before that, I woke up before 4, needed to physically go to the bathroom and had called my sister to help me get there safely.

These helpers all love me (even my brother in-law) and don't mind helping me. But I can't shake the idea that I  am impinging on their lives. And as I get worse,  there'll be more impinging.

I am not saying I am going to off myself, and unless I win the lottery, I'll still need and avail myself of them. I am just saying I hate it and I am sorry.

I did have use the bathroom again on that night earlier in the week, I didn't call for help.  

Sunday, January 22, 2017

Falling apart

After I fell at work last week, I tried to go to the bathroom as little as possible that afternoon. That meant drinking very little after work.

It doesn't matter that it's not real healthy to avoid water. And it doesn't matter that I am pretty safe in my transfers at work. I think this was my first fall since I got my new chair in October.

Put another way, it's mostly mental.

When I fell last night, I took mental to another level and just watched TV.

I'm kind of falling apart.  It was Claren's birthday a few days ago, so I am thinking about her. I haven't seen the sun in ages. I am sore from my falls.

I need spring.

Wednesday, January 18, 2017

Unexpected hearing aid fail

The hearing aids aren't working great yet, but that isn't the big problem: They made me fall.

I was in the bathroom at work on the toilet and I hit my glasses. This sent the part of the hearing aid that sits behind the left ear flopping forward.

If I got to a mirror, I was reasonably sure I could flop it back.

I stood up tilting my head to keep the hearing aid from falling into the toilet. But I couldn't make the transfer back to my chair and fell, or really just slid to the ground.

At that point, the other hearing aid flopped from behind the night ear.

I texted a friend and asked her to find two guy friends. She did. I survived. Oh, but I hate it.

Saturday, January 14, 2017

I want to be a bear

Nobody makes fun of bears -- and they hibernate all winter -- so why do I feel wussy and embarrassed for sleeping a large part of today?

I reckon it is because it   is not abnormal for a weekend day, even one that isn't rainy like today.

I know sleeping a lot is also a sign of depression, and not that I am embarrassed by that, but I suspect I am depressed.

Few bad things happen when I sleep. I don't worry. I don't fall. I don't hurt. Plus, I do need more sleep than others.

Tuesday, January 10, 2017

More reason to hate winter

As I wear my hearing aids as much as possible, I have uncovered new problems.

I took off my hat at work  yesterday, and my hearing aid came loose, falling out completely shortly thereafter.

A friend put it back in -- I feel guilty for how much I make people in my life do -- but I figured I best go hatless at lunch.

I did, and boy, did the hearing aids get cold.

Sunday, January 8, 2017

My awesome doctor

I have been seeing my doctor for 17 years, and she's is pretty awesome. But I may have to change doctors -- she is starting to make fun of me.

At my physical last year, I told her my stomach issues had largely improved since my colonoscopy a year earlier. Ahh, a therapeutic colonoscopy, she replied.

I wasn't sure if she was mocking me or not, so i went home and looked up "therapeutic colonoscopy." Apparently it is a real thinking but only for serious ailments. in other words, yes, mockery.

Later, she asked if I ever used baby powder to help dry myself off. I said I occasionally used talcum powder. I don't; I use baby powder but I couldn't think of the word,  so said talcum.

Her reply: Oh, you're going to get ovarian cancer. She must have realized she was talking to an occasional hypochondriac because she quickly added, just kidding.

Of course, I am just kidding about needing a new doctor. She went up several notches in my book by making fun of  me.

Friday, January 6, 2017

Bifocals, hearing aids and FA

I got my  bifocals today, on the way home from an appointment to get my hearing aids checked.

The bifocals work as advertised, so I can read my comics without squinting. That's good.

At the hearing checkup, I said I still can't really discern things I hear, which I can't. She said it takes time and told me to wear my hearing aids more, that I really need to stimulate m auditory nerves. She said the stats in the hearing aids show I am only wearing them four hours a day. I don't think that's right but whatever.

Mainly what I was thinking during these three hours is how colossally unfair it is that I have to deal with these issues on top of Friedreich's ataxia. It's nothing new, but  I don't imagine I'll ever get over that. How am I supposed to survive a massive disability with all this middling crap? (And I must be losing it to call hearing loss "middling.")

Monday, January 2, 2017

The bar is low

Throughout the 10 years I have been blogging, I have written an average of 152.9 posts a year, always above 125. Until last year.

I only wrote 92. I broke double digits in just two months.

I  need to do better. Not for the legions of fans hanging on my every word.  For me.

I need to feel better. That happens when I write.

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