Super, awesome, fun Friday OR Blood on the wainscoting

You ever feel life you are in a rut, doing the same thing day after day after day?

I have the solution: Get Friedreich's ataxia. It is a never-boring whirlwind.

Maybe one day everything works properly and you even get a little cocky. I can do this, you think.

Then your urinal leaks at 3 a.m. so you have to call your sister. But that is not the only excitement, oh no.

You wake up normally at 6:20 a.m. and roll out of bed. I mean that literally. You roll too far and slip to the floor. Your wheelchair is plugged in, so that means you can't move it. To increase the excitement, your legs slide forward into your laundry basket.

Your toes find the holes in the laundry basket and several are soon skinless. Blood is everywhere, including the trim of the wall. So, you figure, goddammit, I better call my sister again.

Of course, the phone is still on the bed, next to the chair that won't move unless you unplug the charger. But that would be harder to do than just stretching and pulling on the bed sheet to grab the phone.

Your sister comes when called, helps you back onto the bed, puts your bloody foot onto a towel and says, just stay there. She then calls Mom to come help.

They clean and bandage the big toe with three band-aids. Thanks to your offing stupid involuntary reflexes, one has to keep you from kicking them, while the other does the bandaging.

It gets boring after that. Thank god.

Missing my girl

My agency is moving, so I was at a meeting the other day with a woman in a chair. She had a service dog.

It was the first meeting where it was not my dog under the table.

I am also seeing Claren in almost anything light that is under my desk or table.

She is here when I get home, but I miss her at work.

Church thoughts

Yesterday was Mom's first official day as eucharistic minister, so my sister, nephew and I went to St. James, the church of my youth, to witness it.

It was, I think, my first visit to St. James since Gram died. Still smelled the same -- incensey and musty -- like a church should. It all looked the same, except the pews had less wax stains on them.

It felt good to be back, then Mass started. Actually, my chief problem is not the ideology and the fact that some people there would prefer to undo Vatican 2 (more than they have), it's the sound system. I literally heard one Jesus and a few snatches of the Creed, and that was about it.

Instead, I stared at the statue of Jesus near me and thought.

Almost no part of me, at even the worst times, doubts God exists. Too much had to happen just so to enable life, and it did happen. I am sure something started the process of life, something gave the right push to the various atoms into the right forms.

But then I am stuck because try as I might I cannot say God is a loving father. And it didn't help that I did hear one other phrase: "Lord I am not worthy to receive you, but only say the word and I shall be healed."

So God can wipe away sin with a word, but he cannot, or chooses not to, wipe away disease, broken bodies and monumental evil? That is hard for me to swallow.

I'll even make it easy: God does not need to fix everything. Any manmade fault is not his business. That means idiots who kill or lead others to are not God's problem. Someone injured in a car accident -- God does not need to fix. An illness that comes after years of mistreating one's body -- God gets a pass.

BUT people who are born sick? People who never had God's gift of having life and having it to the full? I totally blame God.

And don't give me that "it'll be great in the next life." Screw that. I am pretty sure the afterlife will be good. Who  cares? I am suffering now. Jesus didn't say, "Sure, I am about to be crucified, but the afterlife will be so great." And that was meaningful suffering, we're told. Does my suffering do anything?

Is God limited? We say he is all-powerful, but are we wrong? Mom asks where God would stop if he healed.

Reynolds Price suggests God may not care for everyone as deeply. I don't like that idea.

He also suggests that everything, good and bad, comes from God. That is more tolerable to me, but it portrays God as kind of uncaring. He knew going into this then that a certain number of repeats on  a certain chain of one's DNA would cause Friedreich's ataxia, for instance, and he did nothing.

How is God not culpable?

I feel this even surrounded by blessings that make FA bearable. I refuse to feel hypocritical, though, because unless God accepts the blame for FA, he cannot be responsible for the blessings.

So I am left with an all-powerful God who can't help or an all-loving God who doesn't care.

I guess the former  is better, but God would have to limit himself.

And I just don't get how a loving father can be so cold.

Maybe I am better off sleeping in on Sundays.

In the water

I went swimming today!

It was the first time since my kidney stone last May.

It felt quite good but also tiring. Just being in the water wore me out, so I will wait till tomorrow to write my latest theological rant.

Adventures in baby-sitting

y neiWe had just finished Nut Job, a little disappointing, and the kids were told to just lie down on the couches till their parents came home.

My nephew instead runs out and grabs his iPad. He then lies down and starts playing. I point out his mom probably meant resting, not playing. Without thinking twice, he replies "She just said lie down."

And for sure, she did. I wasn't sure whether to be annoyed or impressed.

And fyi, my niece was playing on her phone the whole time.

I may need a new exercise

Since Claren is no longer with me at work, I have started exercising at lunch to keep me outside for a bit at midday.

It's OK when I do leg lifts and ankle exercises.

But I have lately been having problems with trunk weakness. I know my trunk is weak. I have not been able to do a sit-up in years. So I have been bending over at my  waist and coming back up. I don't really know if it is a legit exercise but figure it can't hurt.

The problem is three people stopped today to ask if I was OK or if I needed help.

Think again, Winona

"I myself am strange and unusual," Winona Ryder claims in Beetlejuice.

But, honey, I got your strange and unusual. FA creates situations so bizarre that to explain them you wind up stringing together words that you never in a million years thinking.

Today, for instance, I got stuck on the toilet because I was sitting on my hand. Really.

I transferred to the toilet safely but a little abruptly. I hadn't pulled my pants down. So I stood again to pull down my pants, only to have my leg give out and send me sitting down sharply on the toilet. Oh, and my left hand was between the toilet and me.

Thankfully, my hand did not hit the water. That's another thing about FA that pisses me off. I need to be thankful for stupid things like this: that my hand, trapped between me and the toilet, didn't hit the water.

My feet slid under the toilet and I bent at the waist, so I had no way to get the weight of me off my hand. Plus, my hand was getting sore.

After maybe 10 hours, or 30 seconds, I was able to move my feet forward and that enabled me to stand up and free my hand. I also was able to finally pull my pants down.

And most surprising of all, I was able not to go to the bathroom till I was ready.

Definitely strange and unusual.

Curses of a good book

It is, as i have mentioned, not always easy to blog when you are depressed, but I found something that makes blogging even harder -- a new book.

I just finished Skin Game, the latest in Jim Butcher's Dresden Files. The books follow a wizard in modern-day Chicago, who is a private investigator. He is kind of a cross between Spenser and Dr. Strange, which means he is awful awesome. The books also include a fair bit of good v. evil, religious type stuff.

This latest book is quite fun, but ...

People who nothing about service dogs should not write about them.

Harry Dresden has a dog, a very big and incredibly smart dog. The dog, Mouse, protects his daughter at school. It has been, we are told, certified as a "medical assist dog," so it can go to school. I'll skip over that -- I'm not sure what kind of school would let a huge dog accompany a child with no adult present, but whatever.

We then learn that Mouse is a classroom favorite and the teachers let the kids play with him.

Uggg, thanks Jim Butcher. It is hard enough to convince people not to pet service dogs. It distracts them and they serve for rewards like pats. If they get rewards for nothing, why serve? But no, he has a dog that allegedly has to watch his partner for a medical condition engaging in play with other people than his partner.

Not saying this ruined the book, but it did disappoint.

Who do I sue?

I need to consult my lawyer about future accidents in my wheelchair because they are coming.

I want to know who is liable when I flip into the road because my wheels don't go up and over bumps as they should. Do I sue the wheelchair maker, the wheelchair provider, all of the above?

Tonight, I realized that was is preventing a major incident with me and my chair is my reflexes. Trust me, you don't want to bet on my reflexes.

Here is what happened, but it is not a never-before event:

I was walking Claren down a sidewalk, my right side nearest the street.

Sidewalks have curbs on them usually, no major bump, just like a fraction of an inch higher than the sidewalk proper.

As I went down the sidewalk -- slowly because Claren needs me to go slow -- the right front wheel touched the curb. It shouldn't have been a problem. The wheel should have easily bounced up it, and I should have just kept going.

Instead, the right wheel banged heavily on the ridiculously small bump, and because it could not flow up the bump, it caused the left side of the chair to swing right. So I was more or less on my way into the street. And at this point, the right wheel does bounce over the bump, so momentum has me headed into the street ... until my reflexes swung the chair back to the left.

This chair is crap.

Watch what you pray for

Do you think God is one of those jokers who grants miracles strictly by the letter of the request?

I pray to be cured of FA, and I am cured. The next day I come down with kuru. Or I get hit by a bus.

Do I need to start spelling out everything in prayers? That could take a while.

Or do I give up asking for a miracle period?