I'm so lazy

When I am a little depressed, even good things can make me feel crappy.

I got an e-mail press release today about a guy with FA who is triking across country to raise money and awareness. This is great.

But all I can think of is how little I do to find a cure or even fight my disease. Far from fighting it, I have almost started snuggling with it.

The trike rider is just 25. When I was 25, I could still walk. I could have done something like that.

But no. I don't feel I can fight my FA. It is a part of me, every cell, every bit of DNA. I have to treat my disease as a partner in my life. At least that is what I tell myself.

I'm sorry, Jack London

When I was in grade school, I did "Great Books." One of the stories we read was "To Build a Fire" by Jack London. Everyone made fun of it because of the repetition in it. London's narrator says "It was cold" or "it was very cold" or "it certainly waas cold." I was not very original in grade school, so I made fun of poor Jack, too.

But I have repeated his words to myself almost every cold day and night for the last three years. I got my service dog three years ago, so I can no longer just pull up my afghan when it gets cold. I have to go out.

I doubt London's narrator had FA, which makes the cold almost unbearable. My circulation is poor in my hands and feet. My hands get numb but warm up fast compared with my feet. Sometimes, I feel as though I have been given cement shoes but instead of cement they fill the shoes with ice water. This chill goes up to mid-calf.

I wear long johns, wool socks, several shirts, a ski mask, big gloves, a wool scarf and a hat. I also put a fleece blanket over my legs, and lately I have been wearing a big rain poncho, not to keep out the rain but to block some wind.

None of this works. I still am frozen, maybe because it was cold. In fact, it was very cold.

I think I'm gonna be sad

The Beatles were right: It probably is today. Nobody has a ticket to ride, though, it is just gloomy out. They are threatening snow showers and it looks it, just all gray and overcast. The thought of snow worries my dad, and he spent much of the afternoon checking the Local on the 8s on the Weather Channel. At least he did until I asked him about it. He said he wasn't worried about the snow, ‟yet,‟ he added ominously.

The morning started poorly, too. I woke up at 6 and fed my dog and took her out, then I went back to sleep and set my alarm for 9-ish. I woke up at 11:45. So I did nothing all morning. My mother says that it is good for me and that I obviously needed it. Maybe so but I felt off all day.

Part of me wonders whether I can blame my depression on my disability. I think this for like two seconds, of course. I blame pretty much everything on my disability. My disability and God.

Touch and go

I didn't fall today. It was close, and the top of my head did touch the floor once, but it was on purpose. Sort of.

I hit the snooze bar on my alarm clock a few times this morning. The weekends are the only time I can hit the snooze bar. I can't do it when I have somewhere to be because I can't hurry well. Hurrying usually ends up with me in a heap on the floor.

Why set an alarm at all if I have nowhere to be? Well, if I don't, I'll sleep till noon, and it's not like I am refreshed. I still take a nap during the day. I know I am going to be tired -- I just have to deal with it -- so I set the alarm so I can do something before I need to nap. Maybe. I often don't accomplish anything.

Like this morning.

In one of my swipes at the snooze bar, I knocked my glasses off the bookcase where I keep them. I remembered my backup glasses were on a shelf a little farther away, but I reached for them and knocked them behind the bookcase. I figured my first pair must be easily reachable, So I reached.

I thought I felt them under my bed, and I inched over to the edge of the bed and felt around and even put my head down on the floor to look under the bed. It was then that I saw that the glasses weren't there, so I tried to get back in bed.

Tried is the key word. In my effort to grab the non-existent glasses, I had put too much weight off the bed, and now I couldn't get back up. I couldn't even reach the stripper pole I have at the head of my bed to help me get in and out of bed.

When I lifted my one hand off the floor to slide back on the bed, I started to fall off the bed because my hand was what was keeping me from falling in the first place. I tried using my head to hold my body up by wedging it into the bookcase. In retrospect, this was probably a bad idea, but I was pretty sure I wouldn't snap my neck like that.

Finally, I had to perform crazy bedroom gymnastics the likes of which have never been seen before to pull my hand not on the floor out from under my body, grab the edge of the mattress, and use that to leverage myself back on to the bed.

Then I got up, but all I did was read the newspaper with backup backup glasses. I was too exhausted by my snooze.

What the ...

Clothes is quite soft, even dirty clothes. It is still no fun to stick your head in a dirty-laundry basket, even if you don't get hurt.

I fell again today. Two falls in three days is more than usual, and I really hope I am not getting worse. I am sure my legs have gotten weaker and stiffer since I have not been horseback riding recently. I am supposed to start riding again soon, so I hope they get better. It makes me want to throw up to think they might not. It is just so hard to exercise, especially in the cold.

Anyway, I was pulling up my pants this morning, a struggle since I usually am seated. I had arched my body and it seemed to be going OK, but then one of my legs buckled and I was sliding down. My head landed comfortably in the laundry basket and stayed there far too long because my early attempts at getting up were hopeless. I am not the best hurrier. I may be the worst. The main issue (other than the dirty laundry) was that I was shirtless and trying not to scrape my bare-naked back on my wheelchair.

Finally, I got up. But I felt like I needed another shower, not from the dirty laundry, although that didn't help. I mean there were boxers in the basket; mine, sure, but still. Mainly, though, I wanted a shower because I was all lathered up and huffing and puffing.

That was not an option, though, so I went to work.

Leave the grab bars alone

When I was in college, I worked for the school newspaper. I saved a file I needed in the perm folder. Over the summer, someone decided to empty the perm folder. When I came back to school, I could not find my file. I was asked where I had saved it. I said the perm folder and was told that folder had been emptied out. I asked why the "perm, meaning permanent" folder was emptied. Everyone laughed, but I never got my file back.

I was thinking of this today in the wheelchair-accessible stall in a bathroom at work. The grab bars were hung with newspapers, very handy if you were looking for reading material, not so helpful if you need to use the grab bars as say grab bars.

I know it it is crazy, but I figure a perm folder should be permanent and grab bars should be for grabbing.

My name is Luka

I fell getting into my wheelchair this morning. It would not have been a remarkable fall at all except ...

I rolled on to the cord of my power wheelchair charger, and it came crashing down on my thigh. The charger is about the size and weight of a car battery, so it hurt a bit and no doubt left a nasty little bruise.

Unfortunately, I don't wear shorts in winter, so no one will see it, feel sorry for me and smother me with kisses or $100 bills. The former would be if Natalie Portman saw it. The latter would be Bill Gates' response.

The wheelchcair is not for show

One of my problems is that I hide my disability too well. Really, mom! Even with the wheelchair, the service dog and the occasional stitches, people don't get it. More than once, people have assumed that I can overcome my disability just by putting my mind to it. They don't believe me when I say I can't do something.

I tried learning to drive with hand controls a few years ago. My arms are in better shape than my legs, but I am not going to win any video games. Actually, i don't even play them because the controls are too difficult to use. I wasn't much good with hand controls either. I veered into another lane at like 35 mph and totally would have died if any other car was near. Anyway, I told a woman at work I tried to use hand controls and failed. Her response: I am sure you could if you just work a little more.

It happened today with a board I am on. I told everyone I could not do it. I just don't have the energy to take it on. They made a few concessions to me, but I am still vice president. I just don't want to let anyone down.

I don't know if it is because people think I am a slacker who needs to be pushed or maybe Superman. Maybe they think I am just lying about being disabled because of the awesome perks I get by using a wheelchair. I know people just don't think, or don't process what I tell them. They see someone who succeeds at everything, so why not believe I can do more? It's almost a compliment.

What it forces me to do, though, is scream out my limitations. Something everyone loves. I know I love to admit over and over what I can't do.

UPDATE: While I am still VP, several people have assured me I am more honorary and to relax.