Note to self: Go to bed early

I was checking my text messages today and I noticed one from last night from my sister: "you ok down there?" OK is a relative term, I suppose, and I was not hurt. Still, if I heard the text come in, I would have asked for help.

I wasn't injured, but I was on the floor with my underwear around my knees.

I took off my shoes and socks in the bathroom, so I was getting into bed barefoot. Sort of a stupid move, but getting undressed in the bathroom was required -- and that's all I will say about that.

The other issue was my boxers. They are faux-silk and I kept slipping down my chair. But whenever I pulled myself back up, the boxers did find some non-slippery surface to catch on, so I got to my bedside without footwear and with my boxers at mid-cheek.

I am not quite sure what happened next. I stood OK to transfer to the bed. My feet were both on the welcome mat I have by my bed to stand on. But I think I took too long -- I noticed that my bed had moved -- a leg buckled, hit the hardwood floor and slid along it.

I was then on the ground.

I considered calling my sister or getting Claren to bark. I also cursed going to bed after everyone else.

I tried getting up, failed, found my slippers, put them on, tried to stand again, knocked one slipper off but got to the bed, pulled up my boxers and went to bed.

Now I need to go to bed now so others are still downstairs when I go to bed.

Theological conundrum

My latest theological conundrum: The things that convince me that God is not friendly, is not loving and may not even be there are the same things that make me plead with God for help.

Today, we had an office party for someone's birthday. So uncomfortable. It's loud and I Can't hear. Plus, I wind up staring into people's chests. Then my head started hurting. Then, I coughed and flew into my computer. Then there was an with my wheelchair controller and the metal toilet paper box in the stall at work. I can't believe neither broke.

I finally got home, took some Advil and a little nap. Right before I dozed off I said out loud: ""God, help me."

I am not sure he did. My head still hurt, my glasses were still bent, and my hearing is no better. That's OK; it would have been weird to wake up fine.

I need more than 10 minutes

Mom's right, of course.

We had just come back from a short ride/walk yesterday -- I rode my handcyle; she walked with Claren.

I was saying that the ride made me sad because I can't even stay in my trike seat -- I keep sliding forward and have to stop and reset myself.

She said that if we spent more than 10 minutes on my issues we could solve them. But all we have is 10 minutes because then another issue pops up.

We were talking about harnessing solutions for my trike and we went in. At that point I hit my heel on the footplate of my chair and remembered that has been a longtime pain.

Mom fixed the wheelchair issue for now by putting some rubber on the footplate but that was after this morning when my alarm clock became the latest issue. The snooze button is so big that I hit it by accident. Then nine minutes after I got up, the alarm went off again. I can't reach my alarm clock without getting in bed, so this morning Claren did not get her continence pill, the bathroom light stayed on, and my door stayed open because I had to get in bed to turn off the alarm.

I was going to go to a store to find a new lock with a more modest snooze bar but no one really stocks clocks. Stores just have them on their websites, but none of those websites really shows snooze bar length. Eventually I ordered one, kind of a guess.

So that is two out three issues solved. Sounds good? It was until my bladder decided it reallyreallyneededtogo. In the ensuing cleanup, which my little sister should not have to do, I missed the end of Once Upon a Time, a fairy tale in real time.

I am pretty confident my story will not have a happily everafter ending.

Wii may not be for me

When Wii first came out, you saw lots of stories about it being used in physical therapy. Well, let's just say Wii and Friedreich's ataxia don't fit.

It's not that I mind my 6-year-old nephew saying "You're toast" before we started a skiing event or his sister cheering me on when I got half her score in figure skating. I don't even mind my nephew' disappointment when we were on the same team.

No, the problem is I can't even get it to work enough to choose a character.

I may have to try an xBox Kinect.

Are you there, God? It's me, Matty

The other night God and I had a chat. Well, no. A chat suggests two people talking. I didn't hear any response to my questions.

I was asking, maybe demanding, that God be there for some people I know who could use him. (I use he and him just for simplicity.) More than me.

I know you are thinking "more than Matt," is that possible?

It is. I like to whine and gnash my teeth, but I'll be OK. I know I will survive what I can and figure out what to do when I face something else. My life is rarely easy, and that pisses me off no end. But I can take it. I suspect that after the despair and pain, or maybe even in the depths of them, I will laugh and I will have family and friends who make sure I do.

I am sure that my friends can take it, too, but I don't want them to have to. Because of Friedreich's ataxia, I expect my life to be fairly miserable or at least really hard. Life should not be like that for others.

God better be helping my friends, so I can get back to feeling sorry for myself.

I don't feel thankful

It is Thanksgiving this week, but I am not feeling too thankful, more sad.

It isn't that I do not have many things to be thankful for, including a brother-in-law who is up on a ladder right now rewiring the light in my room.

I think it is like prayer: If I am going to thank God for things, I need to be able to blame God when things go awry. But that is not how prayer works. So I don't pray.

I mean I talk to God, asking over and over: WHY? Like why did I drive into a branch from a rose bush on my way home from Mom and Dad's. Sure, I ran into it because it was in my way, but how hard would it have been to bump my chair a little to the left?

Bad, Bath and Beyond yucky

I should have quit when I was ahead.

After a successful trip to REI for slippers and a swim shirt, I visited Beth, Bath and Beyond for an alarm clock and a mirror.

Big mistake! I am never setting foot or wheel in there again.

First off, the number of handicapped parking spots? Totally inadequate.

But the store itself was even worse. Crap piled up everywhere so I had to pick the aisles I could wheel down. I ran into a display of shower-heads at one point and knocked a bunch into my lap.

Ugh.

Constant companions

The workers building our new house apparently left behind some roofing materials, and now I have them -- shingles, that is.

At least that is what my nurse practitioner assumes. I apparently do not have traditional-looking shingles, but she diagnosed it from my description of the pain.

She said that illness and stress cause it, but she did not know what caused my case specifically. I told her that "illness and pain are my constant companions."

I was pretty tickled with that, but she just nodded.

So now I just have to deal with the pain and discomfort. That's OK, they're my constant companions, too.

Too much

I like to pretend I am about much more than my disability or my wheelchair. I go to work full time. I take Claren for walks. I try to live my life. But in the end most everything track back to Friedreich's ataxia or the chair or both.

The "pimple" on my back has blossomed into something quite painful, made worse no doubt by the fact that I have to lean against a wheelchair back all day. It might also be made worse by the mold growing on my less-than-a-year-old shower chair.

So now, I need to:

• Call the doctor and get an appointment.
• Leave work and go to the appointment.
• Hope my doctor knows what it is and doesn't send me to a specialist.
• Call the wheelchair supplier and ask WTF is going on with my less-than-a-year-old shower chair getting mold.

It doesn't seem like much and Mom will do the calling, so it really isn't that big a deal at all.

Except I am disabled.

Everything is a big deal when you are disabled. Getting into and out of bed is  a big deal, and so is everything in between.

Adding something, anything, comes dangerously close to being too much.

Being disabled sucks, but ...

Being disabled sucks. No two ways about it. It sucks in the morning when I can't get to the bathroom from my bed in time to empty my bladder, even though my bed is 10 feet from my bathroom. It sucks during the day when a tiny pimple on your back becomes a hellish problem because it is constantly squeezed against an uncomfortable back rest. It sucks at night when I slip getting in and out of my comfy chair. It just sucks, OK?

It does, however, force me to ask people to do things you normally would hesitate to ask your spouse. And it gives people a chance to show me just how great their love is. It never ceases to be awe-inspiring.

My little sister, my new housemate, had two such opportunities and she responded with greatness.

Being disabled sucks, but seeing how much you are loved is pretty amazing.

Saved by a tooth

I suspect it is because I am tired, but the commute home holds innumerable ways to really piss me off.

There are the walkers who use elevators and crowd me in. Granted, one or two could have an invisible disability, but most of them are just lazy jerks.

I missed the train I normally ride, maybe because I left work a little late or maybe because people held up the elevator.

Then I missed the next train. No, I didn't miss it; I couldn't get on. Not because there was no room, but because instead of moving to the center of the car as they are supposed to do, most people congregate round the doors -- you know, the space for wheelchairs.

I honestly don't get this very popular move. It saves maybe 10 seconds. There us more space, for wheelchairs, strollers or people who need it. And needing to stretch out and read your Kindle is not an acceptable need.

I finally got the next train and got out to the parking lot where Mom was waiting. I couldn't get to her, though, because this numb-nuts blocked the ramp with their truck. Then they stopped and stared and pointed at Claren, instead of moving the F--- out of the way.

This pissed-off mood continued until my 8-year-old niece came down out of bed, worried she had cracked her loose tooth. She was reassured and went to bed for 15 seconds before coming back to say she pulled the tooth out. On the way downstairs, though, she lost the tooth.

It all cracked me up.

Falling apart

I am starting to think my pinky finger pain might be less related to a break and more related to some repetitive stress-type injury.

I had a makeshift joystick on my wheelchair for a few weeks that looked cool -- one of my nephew's bright neon green pencil holders -- but it might have pushed my pinky finger in unfriendly ways. I am back to the boring joystick now so maybe that will help.

The real problem is this tiny pimple on my back, which today felt like a dagger poking through me.

I assume it is a tiny pimple. I can't see it. It is possible, of course, that Mom and my sister are just telling me it is nothing, while in reality I have a huge parasite sucking me dry back there.

I doubt it.

Uh-oh, fire drill

We had a fire alarm at work today. Total false alarm, but I am not sure I am real down with the evacuation plans for those of us in wheelchairs.

The safety coordinator and the two of us in chairs go into an office that has a balcony -- although it has a step -- and we wait basically. The coordinator calls and makes sure the fire department knows about us so they can rescue us, but that's it.

At my old job, I waited in the stairwell, which friends did not think was good enough. But I was OK with it because the fire chief told me the stairwell was very fire-safe and had all sorts of anti-fire things built into them.

The office we were in did not seem particularly fire-safe. It just had a balcony.

I know an office fire is super-unlikely, and I have told the other person who uses a chair not to worry about it. But today was a little unsettling.

In other news, I have added my right pinky to bones I potentially have broken. It has been aching for a month or more, not real badly but bad enough.

I also need to add Mom's ankle.

We were on our walk and I saw a dead squirrel. I freaked out because I was worried about Claren biting it. And I jerked my chair away and right into Mom. She claimed to be OK, but ... Stupid Friedreich's ataxia.

I should have got off at East Falls Church

I think we have established that subway elevators are bitches.

Apparently the warnings about elevator outages suck, too. Their suckiness turned my half-hour commute into a miserable two-hour slog.

I checked my text alerts on the way home. It said the elevator going the other way was out at the West Falls Church station. There was a running announcement on the train, but I suspect even hearing people find it challenging to decipher train talk. I stuck with the text alert, and it didn't mention any issues, so I stayed on the train...

And got to West Falls Church to find the elevator I needed out of order, in addition to the one for trains going the other way.

A kind woman got the station manager for me after she took a picture of Claren. He told me that the elevator was out.

I called Dad and explained the situation, and he said he;d meet me at the next stop. I went to the next stop and waited. But he went to the next next stop, so eventually I got on the train again and went to the next stop, met Dad and got home.

What I did learn, other than to never trust the texts, was that the elevators that are painfully out of the way are -- shickingly -- unused.