Rotten excuse

 A column on the Washington Post website by a woman with multiple sclerosis says that cursing is a way to a better life.

She talks about saying, “F#@% you” as an introduction to a group of people with disabilities at a conference. People laughed and smiled and replied, “F&^% you, too.” 

If I were to curse, it would be to say, What the fu…”

I get many of her issues — lack of control, sadness over her failing body.

But if someone I wasn’t very close with greeted me by cursing me, I wouldn’t smile.

She admits that “some can’t relate, [but] others understand.” I understand her argument — that breaking the rules is a celebration of life — I just don’t find it particularly engaging.

There is an episode in Joan of Arcadia, when her brother who is in a chair is encouraged to shoplift by a sales clerk just because he is in a chair. He starts stealing regularly, daring people to confront him. Finally, his little brother does.

Rules are rules. Break them if you want. I don’t care if you curse. Just don’t use your disability as an excuse.

Sleepy? Just during the day

Lest you think that my silence on the sleep issue means all is good, last week I wore the sleep mask not at all during the week. The mask would wake me up when I put it on. I started off strong this week… until last night.

I was tired but not real sleepy when I  tried to go to sleep around midnight.

But I put the mask on and when to turn out the light.

The switch flew out of my hand, hit my forehead and skittered under the bed.

I tried to go to sleep with the light on but was even less sleepy. I finally called my sister to turn off the light at the wall.

That meant I had to take the mask off because playing pantomime at 1 iS not in my skill set. 

Removing the mask set off my left leg,  which kept me up till 2.

So no, not sleeping well, not liking mask.    

One small step for Matty

When I was younger (“but still old enough to know better,” my sister will shortly start yelling), we went to the beach.

Like most a beach houses, this one had a long deck. And like most beaches, this one was windy.

I was newish to wheelchairs, and instead of flying a kite, I decided to fly myself, more or less.

Enlisting my oldest nephew who was probably 7, I had him help hold up a towel to grab the wind and rocket my chair across the deck.

The wind had other ideas and flipped my chair. 

I was not hurt and unrepentant about trying things some may dismiss as stupid.

I was thinking of this Wednesday when a lift salesman visited.

I am having a track lift put in, and he mentioned that come clients use the lift to walk.

AWESOME.

I am confident my nephew and niece will help me.

And my sister is right: I was old enough to know b better. Of course holding the towel above my head would destabilize the chair.  I should have affixed it lower.

No recent muggings

I have a rather frightening thought about why I am not writing more: Bad things keep happening and sucking the will to write right out of me.

Not like I am being mugged. Although my sister did recently threaten me with violence. Apparently, I apologize too much.

No, I mean bad things related to Friedreich's ataxia.

For instance, I planned to write Sunday, but my right foot got trapped under the lift and scraped it up. I just lost all desire to tell you how my city, which feels it is very accessibility-minded, finally reinstalled trash cans on the trail where I often walk Fame. It is right behind a 4-foot caution pole, meaning a wheelchair has to take extreme caution to reach it. Even going very slowly, I still had to go in the grass. The new rule for Fame: no pooping after rainy days,

I planned to try again Monday afternoon, but while on my walk, my left foot fell off the footplate and my left foot got wheeled over.

At least I haven’t been mugged.

Good news

 After more than a year of  working toward a new wheelchair,  I got some good news.

Not from my insurance. “Insurance” and “good news” don’t belong in the same sentence, in my experience, which dates back to their refusal to cover a test our neurologist had prescribed to see  what the hell was wrong with me and my brother.

Anyway, my wheelchair salesman recommended I apply for a program the wheelchair maker has for people rejected by insurance.

I did and they gave me half off what insurance didn’t cover.

My hope is to have the new chair by Labor Day.