Inner dialogue

I fell over the arm of my chair and really hurt my lower rib.

Oh, that's awful. Maybe you shouldn't use it for a while, stay off it, so to speak?

Good idea, well, except I use a wheelchair and have no balance, so every move I make hurts.

Oh, stay in bed then.

 That might work, if I didn't cough or breathe.

OK, ice then. Ice will help you feel better.

You know what, you're right. If only I could keep the ice on the bad spot.

That's easy. Use your harness. That'll hold the ice in place and you.

Good point, but ...

Geez, what now?

Well, if I have to go to the bathroom, I'll use a urinal but I still might run into issues. And if pee splashed, say, on the floor, I might not be able to clean it up seeing as I am harnessed in.

What are the chances that'll happen?

Pretty good. I'd say 100%.

Well, look: You're the one with Friedreich's ataxia. You have been in a wheelchair for almost 20 years. You know you're screwed if you have two or more problems like sore ribs and  a wheelchair. We just can't handle it.

That's what I was afraid of.

Scared of the dark

When I was confirmed, one of my older sisters wrote me a note on paper I can still remember. It was off-white at the bottom up to violet at the top. The top wasn't simply a square edge either. It was a design.

In it, she said we had something in common, night fears, and this was how she fought them.

I could have used that letter last night. I was too tired to watch TV, but sleep wouldn't come.

Instead, all I wanted to do was cry, and I don't know why.

Neither healthy, wealthy nor wise

When I turned off my TV, the lights were still on downstairs because my nephew and his dad were still out at hockey practice.

This made me feel good, like I was going to bed on time. "Early to bed ..." and all that.

Then it was all I could do to stay awake at work today.

It might have been because of my morning. Wardrobe malfunctions -- actually the clothes worked correctly, my body didn't -- made two changes of clothes necessary. And while my sister has to do most of the work, these types of issues take a big toll on me mentally.

I am being careful

To use a urinal while in a wheelchair, one must edge toward the front of the chair, so that everything is, as my doctor said, "descendant." At least I need to.

This means undoing my seatbelt.

Until recently, this worked fine.

Twice in the past week, though, I have coughed after I set the urinal down but before I redid the seatbelt.

The results have been more or less obvious. I fall onto my upper legs and then take a header onto the floor. Actually, I take that back. The first time, I somehow steered my chair toward a little table in my bathroom and rested my head on it until my sister rescued me.

Not sure why this is happening or what to do.

Halfhearted

The cardiac surgeon gave me a lukewarm thumbs-up Friday, saying essentially I hadn't had big problems since I went off the heart drug so I might be fine. He told me he can't see the future, so he can't predict, but things are positive.

It wasn't the "YOU'RE CURED" I was hoping for, and I thought surgeons were a little more positive. But I'll take it. I guess I have to.

Careful as I wanna be does not mean stupid

My sister came into my room last night as Mom was helping me to bed.

As soon as I read this story, she more or less said, guess who I thought of? Mr. Careful as I wanna be. She didn't say the title with the awesomeness it deserves.

Since then, I have been trying to figure out how you could use a power wheelchair on an escalator.

My chair would be too lengthy for two steps, but I don't think the three wheels would rest well on three steps.

The guy was on an up escalator. The only way I can figure is if you turned around and tilted your chair as far back as it goes. You then might be able to maintain a level sitting platform despite the escalator's slant.

 But a reclined chair doesn't move, so I am not sure how you'd get off.

On a down escalator, you would not need to turn around, but the other issues would remain.

But all of my uncertainty about a wheelchair and an escalator will not lead me to attempt it.

Traumatized toes

At my physical, I asked the doctor to look at toenail that had a split in it.

You're going to lose that nail, she said, indicating that the toe and the one next to it had been traumatized.

For the life of me, I can't remember what I did.

Clean bill of health, sort of

At my physical today, my doctor assured me that my  year of heart crap  is not a sign my body is wearing out.

This happens to all sorts of people, she said. It will not be a cause of a shortened life expectancy, pretty definitive for a doctor.

That isn't exactly what I think. My idea is not that my heart will kill me, just that the rest of my body is going to follow my heart. But whatever, good enough, I'll take it ...

... if she had stopped there, but she didn't.

No, she added, what will shorten your life expectancy is the mobility issue.

Ummmm.

It's not like I didn't know but still.

Maybe I should have told her my sister's theory: that I will either choke to death or die laughing.

I win an argument with myself

"No, I don't think all people are jerks," I thought to myself  yesterday morning as the group I followed into my building let the door close more or less in my face.

OK, I may not have used the word jerks, but mom can consider my censorship an early birthday present.

"Not all," I continued, knowing I'd not taking that sitting down (like I have a choice). "My friends, for some."

"Fine," I thought, "but some are jerks."

"Whatever," I responded. "Even jerky ones just don' t think."

"Which is what makes them jerks," I thought.

By this time, I was at my desk.

On the way out that night, a woman with a box pushed the button to open the door and motioned me out first.