The Lone Ranger did not have sleep apnea

I am not sure where to turn as far as wearing a sleep mask goes.

On Saturday, I will have had it a month. The most I have worn it is two hours a night. Far less than needed.

When I put it on, it usually jolts me awake, so I am up till midnight or 1 pretty regularly. And that's not mentioning that I stay up too late anyway in the hope that I will be able to fall asleep with the mask on.

I actually can put it on myself, but it takes 10 minutes, which is great fun when exhausted.

Sometimes, I freak out, but that happens less frequently now. Mostly, it leaks air, and I can't deal with it.

I'm on my third style of mask, and I like this one best. But if I try to rest the side of my head on the pillow, as I have done forever, it leaks.

I am just worried that if someone asks, "Who was that masked man?" The answer will clearly be "not I."

More than sleep

A big reason I did the sleep study, and am trying to use the Bi-pap is the promise of no longer being exhausted from the moment I get up until I go to bed again.

Maybe, I thought, I wouldn't need to nap each afternoon. An extra 10-15 hours a week. I dared to dream.

The problem is that my nap also keep my my rear from being sore.

Maybe it is a good thing I am failing at using the Bi-pap.

Nothing unusual

I have decided that I'd like to bury my face in someone's shoulder and weep buckets.

There is nothing unusual going on,  and perhaps that's the problem.

I told the PT students how exhausting it is to have Friedreich's ataxia because every single thing requires advance thinking. If you don't, events like Sunday's happen.

It is no wonder I am having trouble getting used to a sleep mask. They tell me not to think about the fact I have a mask on. I am bruised and bloodied by my experiences of not thinking.

Don't worry, I won't cry on someone's shoulder. That's awkward unless you are standing.

Ambulance ride

The first time I rode in the back of an ambulance was my second year of college. I flipped a friend's car on Route 29 and we went to the hospital sirens blaring. I was fine, but that trip started me on my fun-filled neurological trip that really hasn't ended.

Shortly after I got Claren and before I wore my seatbelt regularly, I took another trip. She pulled me out of my chair and I broke my collarbone. It hurt too bad to get in the van we had then, which was rampless, so we called an ambulance. No sirens this  time.

The third time was today. There were sirens.

I went a little off the road on my walk. I tried to back up, but my wheels started spinning. So I went forward. Dumb.

It was down a slope, and I didn't go straight down, so momentum meant I tipped over into some bushes.

I was OK, but my left arm was trapped under the chair and hurt like the dickens. It was stuck, too, and I started panicking. Then I relaxed, undid my seatbelt and began thrashing about with my right arm to grab a branch that would help me pull free.

I didn't free it but loosened it enough so it didn't hurt too bad. Then I started yelling. "Help." "Help." I kept yelling until I heard a voice.

I think his daughter saw me go down, so this guy came over, moved my chair a bit, called EMS, called Mom, and he and a woman waited till the ambulance came.

I told the ambulance guy I couldn't move before I realized what I was saying, so  quickly added, without my chair.

I don't think they were busy, but the hospital was slow. My sister came as Mom and I knew she would.

I seem to be OK, although my blood pressure in the ambulance was 77/33.

At one point, I apologized to my sister for ruining her afternoon.

Her response: "I got you, Matty."

A lot of people do.

Back to School, Part II

I visited my favorite physical therapy grad school today to tell my story and show them my moves, like when I transferred to the mat and started to pull my shorts down. It's not easy to do.

I enjoy it. I get to talk about my favorite subject: me, and I get free PT.

No, actually it is about showing students a little of what someone with Friedreich's ataxia goes through on a daily basis. Maybe they had an idea.

They probably won't treat me (except the student already working with me) and maybe not FA for too much longer (not to be too optimistic), but there were still things they can use, I hope.

I think if I go back (and, of course I will if the teachers want), I will tell them at the outset that just like Steve Seagal, I am hard to kill. They'd have to look him up probably, but I want them to feel a little more at ease working with me. Only two or three wanted to try some PT on me.

And I'll leash Fame to my chair. She knows she needs to be good but tried her darnedest to get someone else to pet her. She was a hit, even if they did their best to ignore her.

It's fun. I like talking to classes. Part I.

Word problems

I have a problem with the band Dire Straits and St. Matthew (or Jesus).

It isn't exactly the same, but it seems awful similar.

In the tune "Why Worry," Mark Knopfler and the boys sing, "Why worry? There should be laughter after pain. There should be sunshine after rain."

And they'd be right if should meant will. Instead, I am left adding, "but there won't be" after those two sentences.

St. Matthew writes, "Blessed are they who mourn: for they shall be comforted."

He at least says it will happen, just not when. I am thinking those who mourn may have to wait till they are dead, and I would guess that the mourners don't really care (not that I know any).

I like both song and sermon, but ...

Gotta be the shoes

The weekend a few weeks ago when my shoes kept coming off was the last straw. Surely, I thought, I could find high tops I could wear.

I remembered these shoes one of my older sisters had showed me. They zipped. But that isn't a good enough explanation. The whole top zips, as you can see.

I was dubious they would work with my braces because my braces have a clip on the laces, and I wasn't sure how we'd get them on.

But I was so annoyed with the braces, I ordered a pair. (the ones pictured).

There are issues. The braces don't love the soles, and somehow work their way off the soles. But I like the shoes more than the braces, so the braces best come around.

Back to my old, boring keyboard

The great keyboard experiment is over.

In March, I went to see an assistive-technology specialist who recommended a big keyboard with a keyboard.

I wasn't sure, but I figured she was the expert, so I bought one and regretted it pretty quick.

I kept using a regular keyboard when I teleworked but used the big one for all my homework. For five months. I mean, the awesome colors alone demanded a serious test.

Last weekend, I was ready for a test. I typed as much of "Born to Run" as possible in 30 seconds.

Regular keyboard: "In the day we sweat it out on the street of a runway ..."

Big one: "In the day we swat it out on the ..."

I gave the big one away today to some second-grader who will give it a good home.

My poor health

I got in trouble the other day when taking a survey for Friedreich's ataxia, I said my overall health was a 4 on a scale of 1-10, where 1 is near death and 10 is godlike.

Mom, who was helping me fill out the survey, disagreed. My sister thought I was stupid.

Frankly, I thought I might have ranked myself too high.

I have FA. FA has screwed up my:

• heart
• ears
• bladder
• GI system
• swallowing
• mind (depression)
• and on and on.

I don't see how anyone with FA could be higher than a 5, so considering that my health is great: a 4 out of 5.