Cinder-Matty

 All I can think of is the jumprope rhyme “Cinderella, dressed in yella/Went upstairs to kiss  a fella/On the way her girdle busted/How many people were disgusted?”

I started wearing my abdominal binder again today at the encouragement of my awesome physical therapist.

I stopped wearing it a few years ago because it didn’t really help my trunk stability .

But   at my appointment yesterday, I learned that  balance is a secondary goal.

The main think is it holds I my belly, which in turn holds my diaphragm in the right place, which in turn helps me breathe.

But how many people will be disgusted if it breaks?

Check me out

Three wheelchair folks and my physical therapist came over Friday to show me the wheelchair that matched my stated desires. It does that. And look what else it does!

I was a bit worried because it is not an insignificant piece of machinery. I was not sure it would fit in my bathroom. It will require some new processes — I have to back in and I have to get used to a  front-wheel drive chair — but it works.

And it felt so good to stand.

Now,  though, I have to wait for insurance.

This is why I shouldn’t be allowed out of the yard

 

The guy was insistent.

I told him I had someone coming when he asked if I was stuck and needed help.

Well, they can help you after I get you out.

He was the first walker to pass me. Lots of bikers passed, but the Tour de France they seem to imagine they're on didn’t allow them to stop.

My sister came up and helped, so did another walker, and I was free.

Why I went off the trail is a mystery.

I wasn't distracted or not paying attention.

I just ran off the trail, goddamnit.

An 81! Dang you, FA

My niece has left for school, and I am officially sad. Not because she has left. Because it reminds me of  how hard my first year at school was.

I was lonesome. I didn’t know that I had a major disease. I thought I was just clumsy.  I did not have time to write out my test answers — once I learned I had Friedreich’s ataxia, I would  ask for and get more time.  But because of time (at least that is what I tell myself), I got the lowest grade on a report card since fourth-grade math  — an  81. I remember someone I knew looking at me in disgust when I grabbed his arm to keep from  falling. There was worse, but FA was the root cause of the vast majority.


I don’t feel as if I have accomplished a great thing by improving. My dogs were the main reason. Plus, I have miles to go to be where I want, and  FA  will keep me from getting there.

Two caveats: I know I am lucky. I will not be alone in the miles to go or where I end up. Also, this should not be read as a reason not to tell me about my niece.

Lots of reasons

 Mom thinks the reason I am unbearably sad these days is because my niece is leaving for school this week.

My niece is awesome — she is the only other person in the house that likes Spider-Man — but I am pretty sure that isn’t it.  

It’s the end of summer. It’s getting dark earlier. I am not sleeping. The pandemic is still around. The country is so divided. The world is falling apart. Bikers treat the local trail like their own personal Tour de France. And my niece is leaving for school.

More than humbling

A co-worker and I were chatting, electronically, of course. We are still teleworking, and she works in Oregon.

She had fallen and sprained her ankle, so I asked how she was.

OK, she replied. “It’s very humbling.”

The “it’s” referred to relying on others.

Well, yeah. Sometimes, I think it is more than that.

I know we all need to depend on others at some point in time. But depending on people at almost every minute of every day takes a heavy toll.

I wonder if that is my problem, and if it is, I better get over it quick.