Let's spend the night together ... for 8 years

Most people want to know where Claren sleeps when they first meet us.

Except for the past three years at Mom and Dad's, when I was in a single bed, the answer has always been: with me.  Even in those single-bed years, she and I have been in the same room.

Eight years ago today, I graduated from Canine Companions for Independence and was "presented Claren."

So that means we have been together almost 3,000  days and nights. Of those, I think we have been apart only two nights. Once, when I rode in a cramped pickup to ride at the U.S. Equestrian Center for a day and once when my brother got married. It was on a boat and I feared Claren might want to go swimming.

Other than that ...

Thanks, Claren.

Up too early

On weekends, I get up at 6:15 to feed Claren and am back in bed by 6:25 and asleep by 6:26.

Usually.

Yesterday, I got up and was getting Claren her pill when I dropped the pill bottle. Only about 10 pills fell out, so even though my fine motor skills are next to zero, I picked them up. I didn't want to wake anyone up ... I could do this. It would just take a while.

I got them picked up, but all the bending made me have to use the bathroom. I did, no problem, but somehow when I was reaching to flush I slipped.

Thankfully I wasn't hurt and there are so many bars in my bathroom, I knew I'd be OK. But I also knew I should probably get some help since it was me on the floor, not just some pills.

Unfortunately, my phone was not in my chair because it was being recharged. I had Claren bark a few times, but my door was closed and we were in the bathroom.

When no one came, I looked  around and saw I was sitting on my slippers. I got them on and pulled myself up.

I got back to bed at 6:50, right as my brother-in-law checked in on me.

I was not asleep by 6:51, though. I was too mad to sleep ... at least until 6:53.

Where the Hell is God?

If ever there is a book title that was meant for me, it is Where the Hell is God? by Richard Leonard, SJ, a Jesuit in Australia. Mom must have thought the same thing because she gave it to me for Christmas.

It is very good -- I will never again pray for it not to snow -- and he knows what he is talking about -- his sister was in a bad car accident. But I am still not sure where the hell God is.

Here are eight points from his introduction (his words, my bullet points):

1. God does not directly send pain, suffering and disease.
2. God does not punish us, at least not in this life.
3. God does not send accidents to teach us things, though we can learn from them.
4. God does not will earthquakes, floods, droughts or other natural disasters: can we stop praying for rain please?
5. God’s will is more in the big picture than in the small.
6. God did not need the blood of Jesus. Jesus did not just come ‘to die’ but God used his death to announce the end to death.
7. God has created a world which is less than perfect, else it would be heaven, and in which suffering, disease and pain are realities.
8. God does not kill us off.

The problem is I knew all these before I started.

The one that comes closest to answering my main question -- what kind of God allows genetic disease? -- is #7, and the author does say that God bears responsibility for the world he created.  But he does not really investigate that responsibility. Instead, he points out correctly, that most problems have human causes and solutions if we are strong enough. He uses famine as an example. It could be cured if enough people cared to help and if people were not caught up in war, terrorism, tyranny and more. He suggests we could solve many of the world's problems.

But not genetic disease. It is in our makeup. So is God responsible  and what does that mean? Will I get some reward? Can I curse God?

The author also gives God a pass for performing miracles -- my other big problem because God did heal some people. The author suggests that the miracles may have been less external healing but people letting their bodies heal themselves after being touched by God. I don't buy this.

I still don't know where the Hell God is, but it does make me happier to know that I am far from alone.

Scared of the dark

Today at work I wrote about a woman who hears poorly. She has her co-workers turn her office light off and on when they come in so they don't scare her. I may need to get people to do this in my room at home.

Last night I was sitting at my sink taking my pills when my sister asked if I was OK. Yeah, I was, except she almost gave me a heart attack.

Apparently, I was making more noise than usual so she was just checking on me.

But I totally did not hear her and consequently almost spilled my cinnamon sticks that I eat so I am not taking my pills on an empty stomach.

I could get her to flip the lights, but the sudden dark would probably freak me out, too.

Welcome back, Daredevil

I ended my ban on Marvel comics today.

I've read good things about Daredevil. I stopped my subscription after they had Daredevil take over the Hand, become a super-villain, die and be brought back to life. Stupid, stupid, stupid.

I have no idea what is going on with Spider-Man. I stopped reading him after he manipulated a photo. I know that Marvel let a writer kill off Peter Parker in one series. Writers -- afraid to make up something wholly new so they try to remake something with their own signature.

Me or the FA?

A few weeks ago I asked on on an Ataxia mailing list whether anyone used a rowing machine. I got a few answers, one of which suggested a recumbent trike.

I replied to the sender that I actually had to give up my trike a little while ago and that I use a hand trike now.

I figured that would be the end of it, but he wrote me back. He wanted to know why I "had" to give up riding. He assured me that he was not judging me, although in my experience you don't use quotation marks if you aren't throwing words back in someone's face.

I told him why -- that my legs were flopping around too much -- and he replied, suggesting that it had less to do with the ataxia than with muscle strength and their correct use.

I feel bad about giving up my trike. I feel worse that my leg muscles don't work. I wonder if it my fault, more than the ataxia.

Toxic Avenger or my sister

One night many years ago, when I was still in school, I was at home for a big family gathering. I think it was my grandfather's 100th birthday, which would have been 1993, which sounds right.

I was sleeping on the couch in the living room, or I was supposed to be.

In reality, my allergies were killing me. I could not lie down because I was so stopped up.

Fortunately, the USA Network had a Toxic Avenger marathon and I watched 1, 2 and 3 before finally dozing off about 6:30.

I  was not interested in reliving that experience -- well, except for the Toxie marathon -- so the other night when my nose would not let my lie down, I called my little sister and asked her for some decongestant.

She only had Nyquill, which we both decided would be a bad idea. I might wake up three days later if then.

I called Mom, who had some, and my sister went and got it and brought it back to me.

I took it and played Uno on my iPhone until I fell asleep.

Death goes empty-handed

Because I could not stop for Death, He kindly stopped for me.

Twice this evening actually. But because I am not very comfortable with people I don't know, I sent him on his way alone.

He first visited my room in the new house. I was getting up from my chaise to enjoy the Valentine's dinner of breakfast. I put my feet carefully on the floor and then tipped forward. My head hit the floor with what I thought was a ear-splitting crack.

Claren was disturbed. She kept walking around and over to me then to the door then back.

I figured I better call for my sister to let her know I was alive after the huge crash. All I wanted to do was hold my head and roll around in the fetal position for a while. But I didn't. I was OK; my brain just got a little sloshed.

After my brother-in-law got me back to my chair, I enjoyed the breakfast dinner and decided to take Claren for a walk. I was on my own for the walk because Mom was out.

Claren has a favorite spot to poop, near a light and a driveway so I can get into the grass easily and pick it up.

Unfortunately, the favored spot is right in front of the light pole where the ground is sloped and it is far enough away from the curb that I have to go into the grass to get it.

Every time I have to get it, I say to Claren, "If I die, it is your fault." Normally, I am fine; tonight, though, my tires got stuck after I had picked things up.

I was not stuck; my chair often does not back up but goes forward fine. So that's what I had to do, but that meant going between the light pole and the curb -- which is not a whole lot wider than my chair -- and on a slope.

That would be when death made his second appearance of the night.

Again, he was turned away empty-handed. I put my chair in a slow setting and carefully yet easily rounded the light pole.

What next?

Worked in

Spidey, there on the monitor, has been at work mostly since I started, but some of my artwork finally made it up on the walls today.

Not that I painted it, my great-uncle did.

It took me long enough -- a little over six months, and it might have been longer. But my officemate left External Affairs for a new job within the agency, so she moved to a new floor. And she took all her stuff!

The office looked downright barren.

Rats

A cold just sucks all my energy away.

I do have the best friends

Two of my friends brought me a great house warming gift the other day.

When Mom saw it, she said, "You have the best friends." I have to agree.

It's the pillow at left, which now cushions my chaise lounge.

They decided on the picture because I used to work in newspapers but now work in wildlife.

I have yet to encounter any gnus yet, but they are members of the antelope family and we have been in the news because we are canceling an exemption  that allowed hunting of endangered antelope without a permit.

Accessibility for a--holes

Today I was reminded that public transportation is accessible to everyone ... even assholes.

I got to the subway right as the elevator arrived, rode straight down to the train. A train was waiting, so I hurried right on.

Immediately, I heard a voice say, "You're messing with my vehicle." It sounded magnified, like the conductor talking or something.

I looked around, wondering if I had hit the train with my chair but didn't see my accuser. There was one guy in the rear corner where the voice seemed to be coming from, but he was ignoring me. The rest of the train was empty until about half-way down where a few people sat.

I just sat there trying not to pay attention to what must not have been aimed at me ... at least I did until I started hearing "stupid white boy," "gonna fuck you and your bitch" and more. All punctuated with "You're messing with my vehicle."

I was not about to get off the train to make the asshole happy, so I just stared straight ahead and waited.

Finally, my stop came and I got off. The asshole stayed on. I was going to tell the station manager but he was busy and I just wanted to get out of there. I did.

I close my eyes now and am filled with hate. I hate myself for not doing anything, even if all I could do was say a fellow passenger was verbally abusive to me. I hate that I have a service dog who might lick him and play if he did try to hurt me. I wish Claren was a pitbull or German shepherd, something that could have hurt him. I hate that no one else in the train got involved, although I can't blame them. I hate that I am defenseless. I hate that I didn't even know he was yelling at me.

Mostly, though, I hate the asshole.

Elevators are for me

When I needed it most, my brain blanked on my brother-in-law's cutting comeback when walking people fill up the elevator and don't let me on.

He suggested I say loudly: "Oh, I'll just take the escalator. Oh, wait, that's right, I can't because I'm in a wheelchair."

The stage was set on Friday when I got to the elevator at the West Falls Church metro. I got off the train and wheeled to the elevator just as it filled up with people who walk.

The two people right at the elevator doors squirmed a bit when they saw me and looked uncomfortable, but they didn't get off.

I started to say, "I'll just get the next one." But then I thought, why let these jerks off the hook; they should feel uncomfortable.

Instead as the doors were closing, I shouted, "THE ELEVATORS ARE FOR ME."

Now, I have a quiet voice, and normally when I say I shouted, I imagine most people do not hear me. This time, though, I really yelled. I know this because a woman in the station came over and asked if I was all right.

Yes, I told her. I just don't like people not letting me on the elevator. She agreed, although it might have been just to get clear of the crazy guy.

It was a rotten start to the weekend, but I'd be lying if I didn't say it felt good.

Too damn nice

Shortly after lunch today, I began feeling rotten.

This made no sense because I had just come back from a walk and it was ridiculously beautiful out. For Feb. 1 or even May 1. It was sunny and in the 70s. Gorgeous.

I think that was my problem.

Even after more than 10 years in a wheelchair full time, I still miss running and playing. Doing all the things people do on fantasticly warm days. And as great as  Claren is, I also found myself missing someone to share the day with. Not that I'd leave work early or anything but still.