With great power comes great responsibility ... and captioning

I had my evening all planned. Everyone else was going out, and Fios had The Amazing Spider-Man 2 available for rent.

No brother-in-law or sister to call Spidey a wimp. What could go wrong?

Well, if, for instance, the rental screen said CC on it and there wasn't closed  captioning, that would be bad. But, come on, what are the chances of that. I mean sure, it happened last week, too, but surely that was a fluke. A company would not advertise captioning that wasn't available.

Except that it wasn't available on Spider-Man. It said it was. This is now the second movie I have been unable to watch. It seems to be movies listed as "early release." So apparently, people who are hard of hearing and miss a movie in theaters need to wait to see it. Nice.

The madness of King Matt

My sister and one of my 21-year-old nieces are mad at me.  I am mad at me, too, but not for the same reason. Stupid eyeballs.

About a year ago, I got new glasses. I was surprised because they were a significantly different prescription -- before that, my eyes hadn't changed in a while -- but whatever.

The glasses place warned me that the frames I picked out might not work with my eyes -- astigmatism, I think -- but I liked them so we tried them.

My eyes worked OK on their own, but they did not cooperate well. If I shut one eye, I saw fine, but I often saw two images, one with each eye.

I went back to the store and got new frames to fit me properly, and as I recall it was a better fit. Maybe not perfect, but when does someone with FA find perfection in anything body-related?

I figured I needed time to adapt to the new prescription, and anyway it was fine on a computer.

This went on for a while and didn't really get better. I began talking with Mom about seeing someone, maybe a neuro-ophthamologist back in the winter, but I was still dealing with my stupid bladder.

Mainly, though, I dragged my feet because I didn't really want someone to tell me I was going blind. (It has actually happened before -- a doctor wrote that a spot on my eye was on the wrong eye, and when he saw the same spot on the other eye he thought things were just falling apart.)  Problems with your eyes are not that odd with FA.

I kept getting adjustments on my glasses and cleaning them because both helped, but I never told the glasses place the problem.

I went to an ophthalmologist Wednesday, and he quickly noticed the problem: The prescription I got a year earlier was wrong. It was too strong in one eye.

My niece got mad at me when she learned I waited a year to deal with not being able to see.

My sister got mad the next day after learning I paid the glasses store for replacement glasses.

I didn't think it was their fault. It was the fault of the Independent Doctor of Optometry, who granted operates out of their store.

And they didn't charge me full price. For my daily glasses, I paid just $30. For my sunglasses, I paid regular price. But they'll be new frames and all.

Mostly, I am mad I was scared of going blind. And I am mad I stayed quiet. A tiny part of me is mad my sister is right.

Copper is out, and Legends is on thin ice

Since I am not using the subway these days, I need something new to complain about, and the winner is: bad captions, especially on On Demand shows.

I don't mean like a word or two being changed in the final edit but not in the captioning. That used to happen in The X-Files a lot.

No, for reasons unknown to me, several shows I have tried enjoying On Demand have been nigh on unwatchable because they caption only every fifth line or so.

Last night it was TNT's Legends. Similar issues on The Last Ship.

I had to give up on BBC America's Copper because I could not follow it at all. And it was a fun show.

Am I not supposed to use captions On Demand?

Just like the polar bear

Everyone knows that climate change is threatening polar bears -- melting the sea ice they need. But it is also seriously effing me up.

I expect to be sad and depressed when summer ends and fall begins. This cool, cruel summer, though, which everyone but me and Mom think is great, has sparked the depression early.

At least I assume that is why I want to smack someone, cry or both these days.

Unexpected help

I think I need to rethink how I get out of bed --I wind up on the floor too often.

It happened again Friday after my nap. No one heard my first call for help, but my niece heard the second. 

She came in and said, do you want me to move the chair out of your way?

Yeah, I said, so she did. I was still pretty stuck, so she said, do you want help?

Again, I said yeah, assuming she'd go get a parent.

Instead, my skinny-as-they-come niece grabbed me under my arms.

She didn't get me up and went and got her dad, but in her defense, I was laughing and so surprised I was no help.

Slept through the night

I was a little cocky Wednesday morning. I had just slept through the night for the first time in I don't know how long. No needing to relieve myself, no itching and jumpy feet. I just slept. So yeah, I felt good.

And then I fell getting out of bed.

Just once, it would be nice to have my cocky justified.

The horror

On Friday, a friend was filming my hands and computer screen, so she moved things on my desk out of the shot (although she left Mego Spider-Man hanging over the computer screen). One of the things she moved was my water bottle, which she actually moved to a shelf I can't reach.

I forgot to ask for it back right away, and she went off to another job. I asked her next time I saw her to stop by my desk when she had a chance. I left shortly after that, though, planning to just get my bottle Monday.

On Monday, as I wandered down the hall, I felt a tap on my shoulder and my friend asked what I wanted.

She was horrified when I told her. She led the way back to my desk, got my bottle, then held out her wrist for me to slap (I lamely missed). She stopped by my desk several other times to apologize and make sure everything else was back where she moved it from. She also told me sternly that if such a thing happens again, I am not to ask her to stop by sometime. I am instead to tell her forcefully to come over and fix things NOW.

It was just a water bottle, but it did make me feel good. It made me sad, too.

I work for a progressive agency that makes hiring and retention of people with disabilities a priority. It has never turned down any request I have had and has frequently done more than I asked for.

But I am pretty sure no one is horrified by the really big couch they installed on Monday that really cuts down an open path (A boss was pretty annoyed by the couch for many reasons, including its size. I gave him my two cents as more evidence it is bad).

And I doubt I will engender much horror when I complain about the toilet-seat covers. They put the dispenser for the sanitary covers in the most convenient spot for them, the stall wall next to the toilet. Any other place would have meant drilling into a real wall. The problem is, though, I lean on the stall wall to stand. Now, I lean against the edge of the dispenser. I don't think it is dangerous, just uncomfortable.

I am not alone at work. I have plenty of advocates, and all the time I gain new ones or find ones who have been advocating without me knowing it. One co-worker moved the big couch as out of the way as possible. I passed a woman with a clipboard in the hall. She asked how easy it is to get in and out of the office and took notes as I showed her.

That is what I need to focus on.

Claren does not want a little brother or sister

Claren likes most other dogs, except for Kenny, the puppy we live with, and this weekend convinced me that I will not get another dog till Claren is no longer around.

My sister's family went away for the weekend, so it was just me and the dogs. Yes, and Mom and Dad to care for us all, but I was often alone with the dogs. Claren was more hang-dog than usual, acting pathetic when I played with Kenny.

A service-dog friend has been trying to persuade me to get another dog while Claren is around. Our dog was relieved, she says, which proves that dogs are as different from each other as people.

I am sure I am not ready for another dog, not yet. Claren's patheticness gives me another excuse.

Thumbs down

I had mixed feelings when I first saw the bathroom in the new building, and after two weeks I am not a fan.

It is not real open -- I have knocked to tiles off the wall already because I have hit the walls. In my defense, I don't think they were attached that well.

I recognized that tightness on my first look and noted that the tight quarters included the wheelchair stall, which is smaller than other wheelchair stalls. I fit fine -- there is no extra room. Maybe that is a good thing, keeping me from falling. Well, actually, it hasn't kept me from falling, but I have been able to pick myself up. So thanks?

While I disliked the loss of maneuverability right away, I was sold on the number of stalls -- five total. Surely with all the options, no one except a wheelchair user or someone needing the grab bars would use the wheelchair stall. The close quarters of the stall also made me optimistic. I know big guys use the bigger stalls, but why use the narrower one?

I am stupid.

I watched the other morning a guy go straight into the wheelchair stall. He was not big, not in a chair and his job suggests he has no physical infirmities.

So the upshot is a tight space where people who can fit elsewhere still use the wheelchair stall.

And don't get me started on the auto-flush.

That birthday last week? Apparently, I am 10

Not to brag, but I am good at embarrassing myself. I don't need my FA to help, but it does and I totally blame this one on my disability.

I was filling up my water bottle at work today. We have a handy filtered water dispenser, but it is hard for me to reach and to keep the button pushed.

A friend was washing something at the sink nearby, so I asked for her help. She said sure and finished washing, put her stuff down and filed my bottle.

She then picked up her stuff and just to make conversation, I said, what's that? XXX

My pumps, she said.

AHHHHH! Stupid FA keeping me from filling my own bottle.

At this point, I am laughing and ready to go roll into traffic. I knew she had a baby and I saw things that looked like funnels. She works on multimedia stuff, so I assumed it was a funnel for pouring chemicals. But only artsy-fartsy people still use a darkroom. AHHHHH!

She shrugged and said, it is what it is, which of course, embarrassed me more. What am I, 10 years old?

For those wondering about the XXX, it was at that point in the retelling that my sister said, was it a breast pump? She and Mom then cracked up. I don't know what that says about me or my sister. She's like Radar O'Reilly.  I hadn't even got to the funnel description, and she knew.

Mr. Post-it

I thought I was so smart.

Tired of getting my bottom splashed repeatedly by the auto flush toilets at work, I got a pack of post-its.  My plan was to use the Post-its to block the toilet eye and thus the flush.

But it's not that easy to either get the Post-its out of my pouch or affix them to the toilet. And as far as retrieving the note post use, I am not just failing. My average is somewhere around 33%, with notes in the toilet or other stall. (And yes, I considered writing post poop, but I use them post pee, too.)

I think I need to coat myself in Post-its, and just pull one off when needed.

I may be on to something: That would make it easier to use the toilet, too, nothing to pull up or down.