Monday, April 28, 2014

I am praying to the wrong people

With the stories about the canonization of John Paul II and John XXIII, I realized I  need to get smarter about praying if I want my miracle. I am not getting any younger, and it is so obvious what needs to be done. I need to start looking at things through the lens of capitalism: What's in it for God and the person I am praying to.

Unfortunately, this means no longer praying to the woman on my tea mug: Gram, one of the best people I know. She wouldn't shy away from giving God what-for if he didn't come through ether.

But the way I see it, God gets nothing out of curing me based on an intercession from Gram. Sure, it allows him to claim to be one with the people, but what does he really get? No press -- because no will attribute my cure to him if it comes through an unknown like Gram. No one is going to start praying to her either, as everyone will assume she was helping her grandson.

Plus, God can't know everyone in heaven. When Gram asks for a favor, I picture St. Peter running behind God with the "Roll of Heaven" and whispering in his ear "Simone, her name is Simone. She asked for a miracle for her grandson Matt who has Friedreich's ataxia.***"

Then God would be all: "Oh Simone, how's Matt. Tough miracle, Friedreich's ataxia. Looking into it, though."

And Gram would start getting up in God's face, but he'd be like: "You know what we'll do. I'm a-get Thomas here to lead a fact-finding mission to find out how we cure FA. Thomas, take down every word Simone says. Talk to you later."

I also need to stop praying to well-known saints as well for similar reasons. If a miracle is attributed to St. Matthew's intercession, where is the big news there? He was an apostle, a gospel-writer, of course, God would throw him a miracle or two. They're old drinking buddies. And again, these famous saints already have legions of fans, so a miracle won't get them more.

Plus, you know the big saints have executive assistants to wade through the millions of prayers they get. So you have to convince not only Joan of Arc that you deserve help but also Sandy at the front desk.

The people to pray to are semi-famous, not-quite saints, but on the road to sainthood. That way they have a vested interest in curing me because you need miracles to become a saint. And cures are the best miracles, and an FA cure would be pretty undeniable -- pre-miracle FA gene, post-miracle no FA gene.

God also has something to get out of a miracle for, say, Issac Hecker, founder of the Paulist Fathers and current Servant of God (pre-, pre-, pre-saint). If Hecker prayers succeed, more people pray to him, Catholicism gets media attention and a boost in attendance.

Everybody wins.

OK, Issac, ball's in your court.

***And yes, Gram would ask for help for all her people, but I am the only one I name.

Saturday, April 26, 2014

Wheelchair vendor -- good or bad?

Good news-bad news deal at the wheelchair vendor yesterday.

My chair has a significant safety flaw, bad enough that they asked me not to use it until fixed.

This means I either use my old power chair, which has no back support, or use my manual chair. That is no good.

Fixing tha problem -- the suspension locks -- will likely solve a lot of my problems. That is good.

It took a year of complaining for them to really look at the problem. That isn't good either.

Thursday, April 24, 2014

Falling apart

Usually, I can fall and just laugh it off as one of the hilarious adventures that await those of us with FA, and then there's a fall like last night's.

My sister helped me from my chaise to my chair and I was planning to go straight to the bathroom and bed. But I remembered I wanted to send an email, so I quickly picked up my computer and started typing.

It wasn't until I was bending over to put my laptop down that I realized I didn't buckle my seat belt. Of course, this realization didn't present me from tumbling head over heels onto the floor.

I didn't hurt myself really -- a split lip, a sore nose and a tight neck. But this fall wasn't like the others.

I fell apart.

I was crying, choking back sobs, curling into the fetal position.

"How can I make people I love live like this?" was my chief thought, followed by "Maybe I'll lie here forever."

I decided lying there would only make it worse, so I started sliding toward my chair to get my phone to call my sister. Not that I wanted to.

I was pretty sure anything she said to me would leave me wracked with sobs.

I needed someone unemotional, and it was at that moment that my brother-in-law opened the door  and asked if I was OK. YES!

I asked him to help me up, and he did, kindly ignoring the tears on my face.

I can't believe I managed to fall asleep after that, but I did.

Mom said I just fall apart once in a while because I don't fall apart every day. I wonder.

Anyway, I regret sending that email.

Tuesday, April 22, 2014

A good binding

Maybe being wheelchair-bound like this dude would not be so bad, I thought today from the floor of the bathroom at work.

If I were lassoed to my chair, I would not fall. Granted, lots of other bad things would happen.

I am not even sure how I fell. I transferred OK, stood up to pull up my pants, but fell instead.

I wasn't hurt, but my feet slid whenever I tried to stand, and even worse, no one was coming into the bathroom to help me.

I was basically seated in front of the toilet, facing left. I moved to back right and faced the back, so I could use the wall to keep my feet from sliding. During the slide over, I learned that a bald noggin does not protect you much from the annoying and omnipresent scrapes and bumps of FA life.

Having got to the wall. I stood, but my legs wobbled over. I actually stood twice, but could not reach my chair.

Finally, I got my phone and called a woman who works with us next door. I was going to ask her to call my boss.   Only, she wasn't there.

So, I opened my email ands searched for the guy who hired me three years sago. I found the email with his number, called him and he came and helped me up.

I then went and got all my boss' numbers.

Monday, April 21, 2014

Awesome appointment

Proof that:
A) My baldness is striking,
B) Awesome Con is awesome,
C) My urology problems have settled down 11 months after the kidney stone.

I saw my urologist today, and we spent more time talking Awesome Con than my medical issue.

First, she wanted to know about the haircut. When I told her I dressed up, she wanted to know who I was and guessed Martian Manhunter, who was on my shirt. I told her Prof. X and explained who that was.

She then told me she was pregnant with her third boy and wanted to know if she could take them. Sure, I told her.

Then, I told her things recovered. She wondered why, asked what I thought, said I was great and to let her know if there were any problems, And voile. Done.

Sunday, April 20, 2014

OK, now it really needs to get warm

I went to Awesome Con on Saturday, and well, it was awesome.

Me and Wolverine, I mean John.
Lots of costumes, and people only too happy to let a wheelchair pass... Well, not just a wheelchair -- a limited-edition, Awesome Con exclusive of "Casual Friday Professor Xavier on his way to the barber."

The Casual Friday explains the jeans. It is not that I don't any dark dress pants. Oh no. That wasn't it at all.

Prof. X is on his way  to the barber because even though I really did shave my head, I didn't get all the hair off.

These quirks were on purpose, and I think made the look exclusive. Kind of a once-in-a-lifetime moment you could tell your grandkids about.

It didn't start out that way. I bought a bald wig, but it was kind of dopey. You could see my hair through the wig. So my sister suggested we shave my head. I agreed.

A little tip to those who know me: If I have co-conspirators (my sister) and it is neither morally or legally questionable -- and not too dangerous -- I can be talked into just about anything. Even the danger aspect is not a real deal-breaker.

Anyhow, that is why it needs to get warm. My head is cold.

Wednesday, April 16, 2014

I need a burner phone

Not that I will ever do anything illegal, NSA.

I was teleworking today and texting my niece. So my cellphone was on my desk. I didn't realize that until I was in the bathroom. More specifically until I was on the floor.

Everyone was out enjoying the sunshine, so I had to pull myself up. I did fine, but wow, a fall really saps your energy.

Monday, April 14, 2014


There are some big topics I need to write about: Claren's retirement, for instance.

I think it is foolish to think her aging is not killing me.

She went to her first puppy play as a retired service dog this weekend, and she is struggling today. She looks sore all over. And this is despite the fact that she jogged after balls, and once she got them, walked back.

She is adorable, though. My friend gave her a haircut to see if it makes her less itchy. She is scratching less, but it might be because she is too sore to move.

I am putting off writing about the big stuff because it'll be hard. It is easier to write about silly day-to-day stuff, but nothing is happening. I can't run over someone or something every day, although ...

My sister did notice a shoe at the bottom of the driveway tonight. I ran over it on the way out of the house 10 minutes earlier.

Wednesday, April 9, 2014

Time to change the blog name

Apparently, I am now writing "The good kind of people," but it is only because this suck-ass wheelchair has been failing lately and making people help me. I told the wheelchair dealer that if it were a car, I'd try to get it declared a lemon, but for nyyout if you buy an Invacare TDX SP. One subway trip revealed multiple problems.

I got into the subway station right as a train pulled up. There was a car right near me and it wasn't crowded. "Awesome," I thought, "this never happens."

Sure enough, it didn't happen.

I drove onto the train and promptly got stuck because the chair doesn't have enough power. Oh wait, I'll just quickly switch to the high-torque gear.

Oh wait again, you can't switch gears unless you are at a totally dead stop.

One woman got up to help me almost immediately. The joker like two feet from me waited till the doors closed on me before helping. I eventually backed off the train with the people pushing me and holding the doors. I did not try to get back on that train.

I boarded and rode the next train without incident, if without incident means the constant rocking back and forth that this chair provides. In the past, the wheelchair dealer has said all chairs rock.

At the elevator in my station, four people were waiting. The first got on before me, but held the door, so OK. There also was a caution-water thing in the elevator. It is like a big yellow traffic cone. The ride up the elevator was great, then it was time to get off, so I had to back up near the caution thing.

In a design flaw that seems unforgivable, the lever that switches the wheels between neutral and drive is easily accessible and easily moved. So, if one backs into, say a big yellow traffic cone, the switch flips. And you are screwed because once one of the levers moves, the chair will not move. Unless, of course, one of your elevator riders moves the caution thing, rides the elevator back down because the door closed, then flips the switch for you to get the chair moving again.


Monday, April 7, 2014

One of the good guys

In the interest of giving equal time to non-jerks ... (Well, actually not equal time. I am not writing "The good kind of people" here.)

I was walking Claren on the bike trail yesterday, and the right side of my chair slid off the paved trail to a gravel shoulder. The shoulder was about half-an-inch below the trail so my chair could not get back up.

Unlike second year of college, when sliding off the paved Route 29 onto an unpaved, lower shoulder left me hanging upside down as the car I was driving flipped, I was not worried about the wheelchair slippage. I saw that the shoulder and pavement met in 20 feet so I just kept driving along slanted.

As I neared the spot were they were even, I started nudging the chair back onto the trail. That's when I realized this guy I had passed seconds before was at my side pushing my chair back up onto the trail.

I tried to point out I was OK but gave up and let him help me.

Thursday, April 3, 2014

Hypothetically, yeah

Speaking of Superman, I wondered if this kid who works in IT has balls of steel because he came into the bathroom when I was at the sink and walked straight into the wheelchair, bypassing without a glimpse the open other stall.

I realize I was at the sink and not heading to a stall, but flaunting your use of the wheelchair stall in front of someone who actually needs it seems a little much.

To be honest, if I were able-bodied and I worked in an office with a wheelchair user, I would really think twice about ever using the wheelchair stall because...

...Hypothetically, a wheelchair user might come into the bathroom after a morning of meetings, find the wheelchair stall occupied even though the other stall was empty (I know it could have been occupied when the person in the wheelchair stall came in), have to ride the elevator to another floor, get to the bathroom on the other floor OK, lose control of his bladder and have to sit in pee all afternoon.


Tuesday, April 1, 2014


It was bound to happen: I ran over a woman in the elevator.

I got to the elevator in the Metro tonight, and two people were waiting: a woman with a little rolling suitcase and a woman whose poncho made her seem not-insignificant.

The woman with the suitcase got on before me, though I am pretty sure I trump her in needing to use the elevator. Then I got on. I was near the front but against the right wall. The door opened against the left wall. The poncho woman got on but would not go past me, though there was room. She stayed right at the door.

Then a guy showed up at the door. Poncho showed no inclination to move to let the guy on, so I did ... or I tried to. I apparently ran her over. She howled and hit my back (hit is too harsh; she just touched it really), so I moved back were I was.

The guy was still at the door, though, and finally he asked the woman to move so he could get on.

She did. She didn't seem to want to touch the chair when the elevator got to the upper level, either. I wasn't backing up with her nearby, but she wouldn't go past the chair till I suggested it.


I did check, and she wasn't limping when she walked out.

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