Tuesday, March 31, 2015

It's never easy

I figured when Claren stopped eating, she might be ready to rest. More accurately, I thought when she stopped eating, she'd be dead.

Claren has always been food-driven. When sick, when recovering from anesthesia, you name it. She loves her food.

She still does, I think, but she is not eating.

No, she's eating, just oddly.

On Saturday, she stopped eating out of her bowl, but was more then happy for me to feed her. Same thing Sunday. Monday she ate kibble I dropped on the floor. Today she ate off a plate after I encouraged her.

She still loves her treats, Kenny's food out of his bowl, everything. Snd she still loves her food, just not her bowl.

Saturday, March 28, 2015

Fear and loathing in Falls Church

On Monday, I made an incredibly stupid decision. In explaining myself afterward, I told Mom and my sister: "I hate myself."

Of course I wasn't serious. I am far too lovable to hate.

But a real current of self-loathing runs through me. Not surprisingly, most (all?) is related to Friedreich's ataxia. But it is not all directed at FA.

A lot is. I hate how I can't walk, talk, eat, sleep, hear, see, feel ... live like other people can, and I despise it. It isn't fair, isn't fun and so much more.

But some of it is about how I react to FA.

I hate that I can be surly to people I love when something happens.

I hate that I worry about my future -- being forced to stop working, burdening my family (more than I do now), dying early, getting worse daily.

I hate that FA makes everything an issue, even me.

Wednesday, March 25, 2015

Faster than Fu#@

I didn't even have time to curse.

My sister heard my fall and swooped in before I could say anything.

Granted, I usually wait to curse until after I know I'm OK. This time I waited until my sister unhooked my boxer shorts from my wheelchair.

As anyone who has put on pants or is even familiar with the concept of pants knows, you cannot do it sitting. At some point, you must stand. I have figured out how to do this carefully, but something went wrong, and I fell, smacking my head on a plastic  set of shelves.

It was a family affair getting me up. My sister called to her son to get my brother-in-law. He and my sister helped me up, and that's that.

Except for the bruise on my forehead, and oh yeah, while my brother-inlaw was picking me up, my sister pulled up my pants.

Monday, March 23, 2015

Nothing big

This morning I wanted the soap in that I keep in the shower. Of course, I wasn't in my shower chair, so I could not get into the shower. Not without getting into my shower chair.

And I just thought how easy it would be if I could walk in there and grab the soap.

I'm not asking to be Michael Jordan, but is it too much to ask to take two steps or to be able to live as one ought to be able?


Saturday, March 21, 2015

My Advil gal

Whenever I take Advil, I think of Kelly.

Kelly was a girl I went to high school and kindergarten with. In addition to being smart and kind, she was all the things I was not: popular, pretty, athletic and outgoing. The perfect woman, right?

She was also not a worrier.

I think of her when I take Advil because I overheard her telling the following story to friends.

She said she was feeling low, so she dumped all the Advil out of the bottle. She then decided it was only enough to make her stomach hurt, not kill her. So she just took two and went to bed.

A similar thought would have driven me to have myself locked up.

Wednesday, March 18, 2015

Oh Falls Church, how I hate your sidewalks

I walked (OK, rolled) home from the bus today on the main street in the city, so let me count the ways I despise the sidewalks here:

1. The new sections, which are nice and wide, are brick, so that makes them not so nice, actually. Rolling home actually means bumping home.

2. The new sections are wide, but there is a part of the Broad Street sidewalk that is a dirty, narrow little corner. Making it more narrow is the light post, and making it even more narrow is a big honking plastic cover on the light pole. Opposite the pole was dirt, so in the past my wheels got dirty, but that was the toll.

Today, I was happy to see Falls Church cleaned up the little corner. However, the geniuses did this by putting four big bricks in the dirt, making the narrow area pretty much wheelchair inaccessible.

I realized this too late, of course, hit a brick and got stuck in the dirt, which was mud these days.

I waited awhile, because this is the main thoroughfare, but I was getting worried I'd have to call my sister for help. Some guy actually walked around me but didn't offer to help.

Finally, someone helped me out. I turned my chair to the lowest speed and inched through the corner. The edge of my wheels still caught the big bricks and dragged them all catawampus.

3. The new sidewalks are bumpy, but the old sidewalks are impassible with light posts stuck in them.

Tuesday, March 17, 2015

Kissing alarm clock

I woke up this morning to someone leaping on my bed and smothering me in kisses. Sadly, it wasn't Buffy the Vampire Slayer.

Why, I wondered, was Kenny up before my alarm? Then I heard my niece talking to someone. Why is everyone up, I wondered.

Then I looked at my clock. 6:53 am, 43 minutes after my alarm.

Oh, crap!

Actually, I was only about 10 minutes late to work, but the whole day I felt off.

"I made a friend fill up my water bottle" off.

At USA TODAY, I was near the water and right in a main thoroughfare, so I could snag people walking by for water.

Today I went to someone's office, and asked her to get me water.

She did, even though she was busy.

Man, I am lazy.

Sunday, March 15, 2015

Comfy, cozy

Shortly after Christmas, I bought myself a treat: a new recliner.

It is one of those recliners that raise and lower at the touch of a button. It also has heat and massage controls. But only because all the auto recliners at the store did.

It is pretty cool, big but cool.

Last week, I got the perfect accessory: the afghan Gram made me in 1976.

I had it until a few years ago when I ran over it with my chair and ripped it. I gave it to my older sister to fix, and I got it back.

It looks a bit small for me now, but it was perfect for 5-year-old Matty. And it is perfect still because I  don't need a huge wrap, just a small one that reminds me of my awesome family.

Plus, it has big enough holes in it that I can use the remote while keeping my hands warm under the afghan.

Thursday, March 12, 2015

Dreaming of minority vllains

My sister mocked me a few weeks ago during The Walking Dead when I said Aaron had to be a good guy because he was gay. I have no doubt that gay people can be villains; however, I don't see a TV show introducing a minority character and then making him bad.

It wasn't exactly the same, but that's why I  was so surprised to see an old Criminal Minds (my late-night guilty pleasure) where the serial killer is a wheelchair user.

It wasn't perfect. He wasn't a real serial killer -- sure, he did run people over in his truck, but he was more disturbed than evil. Worse, the BAU team didn't get to blast him full of holes. He drove his truck off a cliff. And his dead wife -- the reason he killed -- was sitting next to him as he went off the cliff (in his mind, not for real).

It was a start, though. I can only hope for a gay, Hispanic paraplegic as the next Bond nemesis.

Monday, March 9, 2015


I have been having some issues. Last week was cold and snowy, so I was stuck home four out of five days. Then this week, I have been feeling, not out of breath exactly, but I feel like I'm out of breath without being out of breath. I am pretty sure it is nothing major -- anxiety, maybe allergies.

Tuesday, March 3, 2015

Looking marvelous

I don't like to change at the pool after swimming.

This is fine three seasons of the year, but in winter it is no fun to leave the pool in wet shorts.

I could alway change in any of the clean, well-furnished accessible changing rooms. But as I said, I don't like to change there.

So as winter approached, I made my move: I bought a poncho!

I believe that I have made it abundantly clear (my love of sweat pants, for instance)  that I  believe it is much better to feel marvelous than to look marvelous. So a lined cloak works. Who cares if it is a little odd-looking?

And with this stupid frigid weather we are having, it has come in handy outside swimming.

Sunday, March 1, 2015

New dog

I had a good phone interview to get a successor to Claren on Friday.

The interviewer said there were no problems, and we talked about what type of dog I wanted. I said outgoing. She suggested affectionate.

When we started talking about commands, that was when I got excited. I said I mainly wanted a dog who'd carry and retrieve things. No problem.

Then I said I wanted a dog more into speaking on command. She then suggested a dog that could be trained to get someone when I fell, and the fall would be the trigger. Awesome!

I was starting to think how fun working with a new dog would be.

And my plan to wait until Claren isn't around works, too, because  they have a backlog of graduates who need new dogs.

Of course, getting excited made me feel sad about Claren, who had trouble walking up the icy ramp tonight.

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