Matty's estate

I am going to a lawyer tomorrow to make out a will/trust/whatever.

Apparently it is not enough to say my niece gets all my comics; other than that, have at it.

Filling out a form on my assets also reminds me that it might not be wise to have my sole beneficiary be my medical power of attorney. Will she be checking the value of my IRAs when she decides whether to pull the plug?

However, to might be overdue to set something up, especially since the lights went out in the bathroom again today, this time right before I was about transfer to the toilet.

Above and beyond

I work with a guy who goes out of his way to help me.

It does me no good to tell him I don't need him to do something because he can't hear.

Today, he was getting off the elevator when I was getting on.

The people getting off the elevator with him didn't hold the door for me, so he pushed the button to open the door. Then he followed me onto the elevator to push the floor. We have to "unlock" the floor with our ID cards, so he did that, even though the doors closed and he had to ride up. Then he got off the elevator with means opened the office door even though it meant he missed the elevator.

Wow.

Ruining my mood

When I left work Wednesday, I held a bunch of papers on my lap, Fame carried my lunchbox, and a bag full of my empties (Gatorade bottles from several lunches) was precariously hung on my chair.

The empties would stay in unless I hit something.

Unfortunately, I hit the side of the elevator doors on the way out, spilling two bottles. This caused Fame to drop the lunchbox.

Fortunately, a co-worker riding the elevator got off the car when she saw my spillage and collected the bottles and handed Fame the lunchbox.

Thanks, I said, really thinking, wow, that was really nice for someone I don't know.

It soon became clear how nice.

Wednesday was crazy windy, and when I turned to where Dad was waiting for me, my bag of empties blew open. One bottle fell near me; one blew into the grass, unreachable for me or Fame.

Three people passed without helping. One guy was right behind us and couldn't have failed to see the spillage. It put me in such a rotten mood.

Finally, Dad came up from the van and got everything. I was left longing for my nice co-worker.

I'm OK

When I fall and call someone to help me, I always say, I'm OK. I think I even said it after the recent fall that sent me to the ER.

The issue is I often look horrendous. When I fall, I frequently end up curled in the fetal position.

It isn't that I am hurt. I just curl up, so I can reach my watch or so I can squeeze past some obstacle on the way down.

I rarely get hurt.

Bruce Springsteeen talks about becoming adept at falling from a horse by being thrown at a local dojo. He should try Friedreich's ataxia. Then he'd be a star at falling.

Heeeeeeyyyyyy

I know I am no Arthur Fonzarelli, who had the entire bathroom at Al's as his office, but I like to consider the wheelchair stall at work as mine. I am the only guy in a chair who comes in and one of the few disabled guys period.

Even if able-bodied guys use it, which they do -- NOT THAT THEY SHOULD -- I still consider it mine and take offense when things disrupt my "office."

The other day I used the toilet, transferred back to my chair and was washing my hands when the lights went out. Again.

Other than falling, dying and having my estate sue the pants off everyone, I am not sure how to convince the landlord that this is really dangerous. The last time it happened, the landlord was supposed to turn off the sensors so the light always stay on. My company's go-between with the landlord told me today that they "really" turned off the sensors this time. What?

Then, on the same day the lights went out, I was on the toilet and some joker walked in on me. I don't lock the stall because then my helpers could not reach me when I fall.

But Fonzi didn't have to lock the door to keep guys out.

WWtFD What would the Fonz do?

Speedy

Fame leaked a little last night.

I don't know from which end, just when I got in bed there was a a wet spot.

We put a  towel over it, and I slept fine. But when I woke up in the morning, the leak had soaked through the towel.

Not relishing the idea of getting who knows what on me or my clothes as I dressed, I called my sister and asked her to help me. It probably sounded sort of flimsy to her, but she helped me.

It kept me dry and saved me 15 minutes, which doesn't sound like much until you realize my morning ablutions take about 45 minutes.

It was a nice break. But Fame better dry out!

I am not a jerk; I can't hear

Poor hearing can be annoying ... like this morning. I fell getting out of bed and called my sister. She was in the shower, so my brother-in-law answered.

My sister just says when I call, "I'll be right down." My brother-in-law just says hello and asks if I need help.

This morning I didn't answer. They sound nothing alike, but I couldn't tell it was my brother-in-law.

I am sure they thought I was dead or at least in a pool of blood because my sister came down in a towel with my brother-in-law.

See, annoying.

Or poor hearing can make you want to throw up ... like this  afternoon.

Fame got tangled up in my wheelchair wheels, and when I heard her yelps, I though it was a fire alarm and kept going. People looked at me horrified at how I was torturing my dog. But I didn't hear.

She seems fine, but ugh.

These were just two of the events tottery to lay me low today.

Solution in search of a problem

I have sleep apnea. I know this. I also know it is pretty mild.

Actually, it is better than that.

It was pretty mild years ago when first diagnosed.

My latest sleep test showed it had improved.

My new sleep doctor didn't seem to care.

With everything else in may life that is messed up, just physically, I am inclined to say, let's just keep an eye on it.

But the doctor wants me to use a dental device that  I have struggled with in the past.

It just doesn't seem too bad.

I hate Februarys

Is it too early in February to say how much I hate this month? Granted, my oldest sister and her husband have birthdays during February, the same day even. But I am tired of being cold. I don't think the sun shone all day today. Its it any wonder I am gloomy?

I didn't even send the birthday couple an email on their day. No good reason, I am just a jerk.

Bloody bathroom cheers me up

I spent most of Wednesday trying not to cry. I was mostly successful.

It was nothing big, just little reminders of how crappy my body is.

I knocked a hearing aid from behind my ear. I couldn't put it because of my pathetic coordination.

The very fact that I need them at all is another example.

My hearing aid helpers weren't in, so I asked someone else. She didn't understand what I needed because of my sorry voice, which has been mangled by Friedreich's ataxia. I showed her the other side and said, like this. Only confusion. She wound up putting both hearing aids on the front of my ear. I gave up and just took them out.

Then my left leg started jumping. It wasn't even 10 o'clock.

I went to the bathroom. The maintenance were cleaning the stall next to the wheelchair stall. I could see he was mopping under the divider, so the floor would be wet. I didn't want to transfer on a wet floor, but  I have learned not to wait.g

I transferred safely. Then I saw it!

Part of what he was mopping up appeared to be blood. And it wasn't mine!

No risks

Mom and Dad went away for the weekend.

The last thing Mom said to me (well, other than, "I forgot my gloves") was the following:

I know you won't want to ask your sister for anything more than the bare minimum, but do not take risks! 

The way I look at it I know have orders to bother my sister for anything. I mean, it could be risky if I dont get an ice cream cake tomorrow.