The boy who fell too much

I went to the wheelchair stall at work this morning, and as I was sitting down, my pants got stuck.

It took me several tries to get them down, and I must have been grunting or making noise of some kind.

I say this because after I was sitting down, I heard, "Matt. Are you all right?"

One step up, 40 million steps back

Starting last Friday, I started wearing my sleep mark for 6-8 hours a night. I thought I had turned a corner.

Then on Wednesday, I didn't wear it four hours, and last night I wore it less than one.

But I don't have time to consider why the sleep mask is killing me because another streak started, this one quite troubling.

My incontinence has raised its nasty head each day this week.

I had been wearing long pants, so it was just mechanically hard to deal with the extra material (although I do at work). But shorts aren't always the answer. Today, I was unable to get to the bathroom because a foot slid off the footplate and got painfully wedged between it and a wheel.

A lot of the problems seem to be just bad coincidences, but I am not sure why they are all happening this  week. And I hope I have found the right doc, but she had no appointments till December.

My headshrinker says moving back and forth is still better than sideways because at least you are moving.

I disagree.

'Amazingly well'?

After discussing failures of my heart, lungs, diaphragm, bladder, stomach, skin and mind, my doctor said I am doing "amazingly well."

My doctor is, I think, a realist.

I don't feel "amazingly well" (see opening phrase).

I am not going to seek a second opinion, but I feel more like I am just hanging on, sometimes just barely.

Me and Fantine

I dreamed a dream last night.

I can't remember most of it now, just a part where a doctor told me it was good I was taking a pill because I'd get used to it. But I remembered it all when I woke up.

I don't dream, haven't in years. I suspect it is because as one of the sleep doctors told me, I'm not going into REM sleep.

I did last night, though. I assume it was because I wore the sleep mask all night.

Yay!

It wasn't perfect. I had to stay up late. I am tired. But I did it.

Wheelchair stalls are for wheelchair users, really

A few months ago, I emailed the gent at work who uses the wheelchair stay to change into workout clothes each day.

Even though you ask me, I wrote, my disability is such that I cannot tell from minute to minute when I will need to go to the bathroom. Therefore, asking me is pointless, so please stop using the stall.

After I sent it, I felt three emotions.

I was proud I stood up for myself, although I was annoyed it took me who long. I was also annoyed because this guy should know better. And I was annoyed that I have Friedreich's ataxia and its plethora of bodily failures. Lastly, I was embarrassed I had to share one of those bodily failures with a co-worker to get hm not to do something he should not do anyway.

But it worked.

Until recently.

Once, he overheard my boss and I planning a meeting, so he came over and said, Since you'll be in a meeting, I'm going to use the stall to change. Another time, he saw me leaving the stall and said, Can I use it then?

Pretty clearly, he didn't get it. And I am quite certain he uses the stall when I am not in. I get that I am the only gut in chair, but that doesn't mean it's OK. He has no business using a wheelchair stall.

He came up to me today and said, Mind if I use the wheelchair stall, five minutes?

I looked at him and replied, Didn't I send you that email?

A long time ago, he answered.

I fought the urge to say, "Not cured yet, dude!" I merely said the "one minute to the next" thing.

He said OK and came back all changed and said, I just thought five minutes would be OK.

Again, I resisted an urge to yell, "MINUTE BY MINUTE," and didn't really respond.

Maybe my sister needs to talk to him. My work sister is itching to.

'Hopeless hope'

Yesterday I got an email from the Friedreich’s Ataxia Research Alliance announcing positive results in a drug study and saying the drugmaker is going to submit the drug for approval. That would make it the first approved therapy for FA.

I spent much of last night trying to figure out how I felt.

To be clear, I wasn't offended by the idea of a treatment. The sooner we can eradicate FA is still too late for me. And MOXIe is not a cure by any stretch. It is supposed to slow the disease's progression.

And who knows if or when it gets approved? Or if it would be priced out of my reach? The positive results don't seem that earthshakingly awesome, either.

But ...

I have said that I could survive if I didn't get worse (I don't think I have made this claim recently as I have gotten worse).

I don't like being hopeful but how can I help it?

P.S.: Reynolds Price had the idea of hopeless hope.

Sleep apnea is winning

I have written before about how more than one disability causes issues. Like needing captioning and a wheelchair in movies. A  captioning pane doesn't sit at the right height, so you can read the captions or watch the movie, not both at once.

Sleep apnea and coordination issues is another.

If I ask Mom or my sister to put the mask on before they leave or go to bed, it tends to wake me. I have to put it on when I am nearly falling asleep.

It takes me a minimum of five minutes to get it over my head and attach the straps. I can't really adjust anything, which luckily you aren't really supposed to have to.

But that is the problem lately: leaks. I fiddle with it and try to fix it. Sometimes it works.

And sometimes i just wind up disconnecting the mask from the air, which I can't fix.

Being disabled is freaking awesome.

Closing doors

Perhaps this is a silly pet peeve, but I hate when people in front of me by more than a step hit the automatic door button for me and just keep going.

If I trail them by a few steps, there is a fair chance the door will close on me, especially if my chair gets stuck in the doorway, a not unusual occurrence.

So normally, I wait till the door starts to shut and hit the button myself.

Last week, though, a guy hit the button for me and watched me and the door. I went through since he would have been able to hit the button again or hold the door.

I made it through fine.

There are two doors to get out of my building, though, so I hit the second button, and the door opened. It then closed right on me.

I was half in, half out. The door was wedged behind one of my little wheels, so it wouldn't open more and I couldn't back up.

Eventually, a co-worker yanked the door open.

I am John the Conqueror root

For a family who spends their weekends at hockey rinks, lacrosse and soccer fields and basketball gyms, my sister's family is sadly not superstitious.

I fell getting into bed yesterday. My niece was the only one around, and she helped me, although I know I was exasperating her.

Her team then went on to win that night and this morning.

But no one liked my offer to fall before every game.

I am so under appreciated.

Matty the master angler

When my uncle retired from our agency a few years ago, I wrote a retirement notice, which included a line that he'd have time now to take me fishing.

I was totally serious about wanting to go fishing, but I knew it wouldn't be an easy task, so I didn't really expect anything.

But this summer, my uncle started planning, and yesterday Fame, Mom and I met my uncle and one of his sons, my godfather and godson, for some rockfish fishing on the Rappahannock River.

Before we even got on the boat, there was an issue: It was real windy, so rockfish were out. But perch, catfish, smallmouth bass and snakeheads were possible.

The first step was just getting me to the boat: My chair got stuck in the gravel driveway. My uncle, cousin and someone from the marina pulled it free and guided me backward on the dock.

Once at the boat, I stood up and hugged my uncle, while the others put my cushion onto my manual chair, which was on the boat. Then they got me on it.

Just riding in the boat was awesome. I could hardly stop smiling. Mom and my cousin held my chair down because it was really bumpy.

The first few spots we tried offered nothing, but just holding a rod after 25 years was so great.

Then we stopped in some shade near the shore to have lunch. Apparently, the fish agreed it was lunchtime.

My cousin got a catfish. Something was nibbling at my line, too, and I pulled up a catfish, too. Maybe I should call it a kitten-fish, given that it was about three inches long.

Then I hooked a white perch and two more catfish. I say "I," but my uncle and cousin baited and cast for me. We set them all free, even the good-size catfish my cousin caught. Then we came home.

I was kind of surprised how great it was, and both my uncle and cousin said we'd do it again. I'm ready.