My fears don't ease

My niece, who is almost 9,  came downstairs after she had been put to bed the other night because something was bothering her. I am sure her parents hate it when she does that, but it always makes me laugh.

The reason is because she knows she is being silly, and she always looks a bit sheepish when she climbs onto the couch next to her mother.

She may be embarrassed, but she still takes advantage of having someone who can soothe her fears.

I envy her for that.

I have people who try to ease my fears, but it is hard to soothe my fears because they are often based on a very real, very unpredictable disability.

Perhaps I need to start worrying about games I played during playdates.

Glee tries to make wheelchairs hip

Glee apparently has decided that wheelchairs are the "must have" accessory for everyone in high school.

I realize I am late to this news, but when my sister told me last week that Quinn was now in a chair, I almost did not believe her. I mean, what the hell? Faker Artie was not annoying enough. Now they add another chair.

I understand that a wheelchair can introduce tear-jerking drama, like when Quinn heroically stands up and walks across the stage at graduation. But if that happens, I hope this dude sues.

I had already given up on this show, but wheelchair Quinn sealed its fate.

Note: This would have been a longer rant, but in searching for info about it, I stumbled across a Washington Post blog using wheelchair-bound and I had to tell them that was uncool.

My drugs go missing

Recently -- and I am not sure whether this is good, bad or indifferent -- I have to take Advil after swimming or I wake up at 2 or 3 with big muscle pain in my thighs.

Last night, I remembered. But I was having some stomach issues and all I wanted to do was watch Game of Thrones and go to bed.

Unfortunately,  my thighs were not down with that plan. I woke up at 2:30 feeling like someone was pounding my thighs with a hammer. No one was, but I needed Advil.

I reached back for my trusty bedside bottle of Advil, then I reached on the other side, then I turned on the light and looked, then I put on my glasses and looked. Nothing! My drugs were missing.

I had Advil in my wheelchair bag, too, but getting it was an issue.

Last time this happened, I called my sister. But getting my phone would be almost as hard as getting the Advil. So I maneuvered my chair till I could reach the bag.

But I could not find the bottle by feel. I finally had to sit myself up, using the chair for balance, and look in the bag.

I found the pills quickly, took them and fell back asleep.

Tonight the pills are at the ready even though I did not go swimming.

Who can joke about wheelchairs?

A woman on Don't Trust the B in Apartment 23 was using a wheelchair last night.

It was someone's mother and the daughter had complained how her mom never took her horseback riding or stuff when she was a child. 

One of the jokes, supposedly, was that, of course, a person in a chair could not take her daughter riding.

Another was how people feel sorry for people in chairs and excuse their poor behavior.

Leaving aside the fact  that people in wheelchair ride hoses regularly, I always cringe when I see disabilities on TV because too often the actor portraying someone with a disability is not disabled.

The same happened when a deaf woman appeared on The Big Bang Theory.

And that one was even legitimately funny, and the woman is deaf.

The woman was a golddigger, but Penny didn't buy that. "Handicapped people are nice, Leonard. Everyone knows that."

Even when the joke is funny, though, my first, second and third thoughts are,"What do you know about wheelchairs or deafness?"

It's why I can't like Artie on Glee.  He made a wonderful speech earlier this season about how people in wheelchairs are often coddled and not trusted. Instead of cheering him on, though, all I could think was: "How dare you? What gives you the right to say what people who use chairs feel? What do you know?" The actor who plays Artie does not use a chair.

What do people associated with Big Bang know about deafness? 

Should it matter? The jokes are funny or not on their own. Why do I need the background?

I have thought about this since I saw Seth Green do a skit on Mad TV about jerks in power chairs. It is quite funny, I guess. The jerks tend to crash into wall and desks extravagantly, and I always wondered: "Did Seth Green know why people in power chairs do crash into things?" We aren't just uncaring souls. In my case, my muscles can't stop fast enough if I hit something and my fine motor skills are lacking. Others might have vision problems.

Maybe a friend or relative uses a chair so Seth does know all about it. But maybe not. And until I know, I just can't laugh at the skit.

And PS:  Don't Trust the B in Apartment 23 is way stupid. I am usually just too tired to change the channel after Modern Family. James Van der Beek is the only good part. He plays himself but as a narcissistic celebrity. Very good.

It wasn't me

The huge crash in my office today? I had nothing to do with it.

I don't really know why but a big framed picture fell off the wall. Maybe my office-mate touched it. But fall it did. It hit a big cabinet on the way down and the glass shattered. The frame was aluminum and the sound of reverberating metal rang out, too.

And to show you how effed up Friedreich's ataxia is, all the noise did not startle me at all.

Honestly, it sounded like what I think a bomb would sound like.

I think all the people who rushed into the office must have thought so, too. They probably also thought, "What did that doofus in the chair do now?"

Long ride

I left work at 4:40 today and got home an hour later. I practically could have rolled home faster.

First off, I enjoyed a biker who rode the elevator up, which was fine, except she did not hold the elevator door so it closed before I got there. Fortunately, someone else pushed the down arrow right away and it opened again.

I had just missed a train and the next one was not for 10 minutes. Another was due just after that and third one five minutes after that.

I made the third one.

The first one was packed and did not even stop. not sure what people who needed to get off did. The second one stopped but was too crowded for me.

Then at my stop the elevator was out of order due to some passenger issue. Not sure what that means but it meant that I had to go to another farther stop to get to the street level.

It took a while and several calls to the station manager before that elevator made it.

Then I got home.

Swimming wears me out

I got back to swimming today. We were between sessions.

I am so tired and worn out from it. I never take it easy when swimming. It feels so good to work out in the water. but afterward I feel terrible.

I'm on the chart

When my little sister was younger, Mom added to the chore chart, "play with E." (Actually, Mom used her name, but I'll respect her anonymity, until a publisher offers me millions).

We all find this funny, and enjoy making fun of a sister so unhip that playing with her made the chore chart.

Well, I did find it funny, at least until I made the chore chart.

My niece wrote up the list at left. That's "assist Uncle Matt." I assume it means plug in my iPhone and open the door for me. She and her brother aren't quite up to lifting me up yet.

Still, pretty cool they are watching out for me.

No exercise

It is amazing to me just how easy it is to stop exercising.

I have a pedal machine that I put my feet on. I turn it on and it pedals. I turn the power real low so I am actually doing some work. It was going well until last week.

I was not feeling wonderful last week and this week I have felt OK but been really tired.

Just like that my exercising stopped. Pathetic.

Granted, I can and will start again, but still pathetic.

Say what you mean

This guy at work was telling me about his weekend. He had gone hiking and seen a fox.

I was jealous. I have never seen a fox, I told him. He said they  are probably scared of Claren.

I agreed, but  added that even before I had her I never saw one when I was out "walking about."

He looked kind of surprised, so I named some places I was like Great Falls.

He didn't care about where. He had picked up on the "walking" and wanted to know if I walked.

The funny thing was I did not mean I walked. I was just using walked to mean "got from there to here."

Jesus gets me

Jesus had a crap day today.

It is important for me to remember this.

I need to know that whatever I face, he went through worse ... not because it reminds me that I got off lucky if God did that to his son. I need to remember because it means that God, part of him anyway, knows all about my problems.

Jesus knows what I go through.

Pain: Being nailed to a cross beats banging your head into the side of a car. It even beats a growly stomach.

Despair: No one really knows what he said at Gethsemane. But how could he not despair. He lived a model life. Now he was being asked to die?

Anguish: Even if you believe Jesus was mostly a God who knew the future and his powers, he was still a man. That humanity could not help but feel great doubts about everything. No man could have been sure everything would work out. He may have had enough faith to overcome his doubts, but he had them. And those doubts are more serious than my concerns at the moment. 

Like whether to use a personal attendant at this workshop next month. My sister thinks I am being pig-headed not to accept help -- a belief confirmed by a fall this morning that required help from my brother-in-law. It's not that, well, mostly. I am just not at all sure I can let a stranger help me that intimately.

Loneliness:  Both Jesus and I have perfect mothers, and I have wonderful family, too. (I imagine he did as well, but whatever.) Nonetheless he felt alone on that cross, forsaken even. I know he gets how I can feel that surrounded by the love I have.

Quite accessible

I spent the day at the training center in West Virginia seeing if it is as accessible as billed. It is.

I an see myself surviving there, especially with my power chair. It is a lot of walking.

The bathroom has bars everywhere so that should work. The only issue is the bed. It is  a good height, but there is nothing to hold onto and help one transfer.

Now I have to decide if I need help.

Gotta love it?

I am not one to disagree with my 7-year-old nephew ... but ...

My manual chair was out because I am taking it Thursday when Mom and Dad take me to scope out the training center in West Virginia.

My nephew and his sister were giving each other rides in the manual chair. My sister asked what they were doing and my niece told her. To which my nephew added, "Gotta love it."

I was at work for these shenanigans, but Mom and my sister told me.

Taxi driver

I am waiting for my new beaded seat cushion to come in the mail from Amazon. I will soon realize my dream of looking like a taxi driver.

It looks kind of dorky, actually.

I cut off the seat part and just use the back. It may look silly.

But it will mean I do not have to wring out my shirt when I get home. I hate my wheelchair, did you know? The back is bulky and is made of cheap plastic that cracks real easy and stores heat.

A dorky look is a small price to pay.