Sunday, November 29, 2015

Mostly thankful

Why, I have asked myself this week, is Thanksgiving so hard?

I have much to be thankful for: family, friends, co-workers, a good job, good health if you can ignore Friedreich's ataxia (part of the issue might be I can't), a home, a spot on the list to get another service dog, watching The Simpsons with special guests, amusing dinner-table conversations and much more.

The trouble is that there are many  things for which  I am decidedly ungrateful. Actually, it goes beyond just feeling ungrateful. These things make me question God. Not God's existence. I am sure of that. I am much less certain God cares.

If I were going to create a world where people would eventually evolve, I would peek in every now and then to make sure nothing awful was developing -- like say generic building blocks that cause people to  get terrible diseases.

But it is more than that old saw. There just seems to be so much meanness in this world. People take advantage of others and prey on fear. The newspaper has become a hard read. And God does not get involved.

I realize there have been bad people before so maybe it mostly is the old saw.

Wednesday, November 25, 2015


As I sat in the shower this morning, I was overcome with a desire to just give up.

I didn't have a plan for what giving up meant other than crawling back to bed for many, many hours. That is, I guess, one of the benefits of giving up: no developing a long-term strategy.

But I suspected I could make it through today -- and given that I am writing this at 9 p.m., I apparently was correct.

Life gets no easier, though. Ought it to be this hard?

Plus, it's not like I could easily get back to bed. I'd have to transfer to my wheelchair, drive off, clothe myself (even in defeat, I wouldn't sleep al fresco), then transfer back to bed.

Monday, November 23, 2015

What to do

I blame the world. I want to do nothing except watch TV (fictional shows, not news) or sleep.

I miss my dog. It is getting cold and dark. But Supergirl is coming on.

Wednesday, November 18, 2015

Perhaps I need some cheerier music

For weeks, the first thought that pops into my head each morning is a line from Springsteen's Point Blank: "You wake up and you're dying/you don't even know what from."

I'd venture a guess what I am dying from. Today, it was the wheelchair stall at work. 

It is too narrow; they are working on improving it. But I won't be holding my breath till it is wider. There are a zillion steps before things can be fixed.

Making things worse, others continue to use the wheelchair stall, though they aren't in wheelchairs. This makes me sad. People who know a colleague uses a chair don't worry about using the stall. Once it is widened, the problem will only get worse, I am sure.

But my sadness is not the only issue. Twice today, I went in and found the seat raised. I appreciate that they raised the seat to pee, but by not putting it down, they are forcing me to venture farther into the too-narrow stall. I spent close to 10 minutes this afternoon just going back and forth to get in a position that was fairly safe to transfer from.

I am not sure there's a tune for me.

Monday, November 16, 2015

Pants-less 'go tit'

I'd like to blame this on the horribly invasive procedure I just endured. (And before anyone complains about my description, what is more invasive than a scope down the throat and up the wazoo?)

But that's not why I spent most of the day wheeling around the office with my pants unbuttoned and fly open.

I blame my stupid, clumsy fingers. I couldn't do the button, and the zipper was irksome.

Granted, I showed nothing because of my long shirt and seat belt, but still.

The fingers are also why I emailed a colleague and perfect stranger: "go tit, thanks." Obviously, I meant "got it."

I am steeling myself for the sexual harassment class. And they'll probably bring up the pants thing.

Thursday, November 12, 2015

I survived

Not to brag, but I may have the cutest esophagus, duodenum, stomach and colon the world has ever seen.  that's my takeaway from the long-awaited colonoscopy/endoscopy yesterday.

Granted, the doctor didn't come right out and say it, but she can't be seen having such a bias. You have to read between the lines of the report and then it becomes painfully obvious that my inner organs are just smoking.

Here are a few other tidbits from the test and its hideous prep:

  • Mom is awesome for pouring me glass after glass of the prep juice, but she is not about manipulating me. I said I couldn't drink anymore, and twice she said, OK, this will be the last one.
  • I am glad my little sister came with Mom and me, but if I didn't know she looks and sounds like Mom, I'd swear she was adopted. She is so something. Pushy doesn't seem right. But something. We were waiting for the doctor to come chat so we could go and she was taking a while. My sister asked the nurse about the doctor twice. The doctor finally called up from another procedure. I am so lucky my sister is on my side.
  • In addition to the normal checkin bracelet, I got an awesome one in neon yellow that said FALL RISK. I debated just keeping it on forever.
  • The FALL RISK bracelet meant I had to do nothing myself, which is good because I couldn't have. When they were preparing me, they positioned me as they wanted. I just had to lie there. (My sister told them they'd have to do this.)
  • Everyone was so nice. I highly recommend Georgetown Hospital for all your medical needs.
  • I have no tolerance for anesthesia. It came via IV, and they said beforehand "you might fell a stinging sensation when the anesthesia enters the IV. OK, here it comes, in 3-2 ..." I might have heard 1. Next thing I knew I was waking up in recovery.
  • For an endoscopy, they put a little thing in your mouth to keep you from biting the scope. IT is bright green. I must have looked so funny.
That's enough.

Monday, November 9, 2015

Paying attention isn't enough

When I was little, I loved funeral homes.

I went, it seems, to an inordinate number of funerals when little, but the deceased were old. And I don't mean old for a little kid but old for their time.

Funeral homes were a chance to hang out with my cousins when adults were preoccupied, play discreet games and explore uncharted lands.

I still have what I am sure is an apocryphal memory of stumbling down some stairs and into the embalming lab and seeing sets of eyeballs on a rotating shelf.

I was reminded of that memory yesterday when I saw the stairs in question. Unfortunately, there were no games last night. When I spied the stairs, I was in a receiving line for a USA TODAY editor who died of cancer.

First off, not a fan of receiving lines. What can you say to a woman who has lost her husband or a Mom and Dad who have lost their son?

"I'm sorry" hardly seems to cut it. It is never easy for me to go places -- I think that is apparent -- so perhaps people see me and it means a lot to them that I went. But that is just not enough.

"Attention must be paid," and I do, but I need to do more.

I should be able to fix things, but I can't. I can't help the wife, the parents, my teary friend.

I no longer care for funeral homes.

Wednesday, November 4, 2015

The unhated

I may have told Mom that I hate people. Recognizing that my hatred is limited to jerks, I will now mention a few people I don't hate:

  • The friends I had dinner with Monday. One cut my entree up; one poured my water glass into my sippy cup, and one have me limited edition white fudge Oreo cookies.
  • The woman at work who filled out my form for a flu shot, then led me to the front of the line. At least I didn't get booed this time.
  • A friend I complained to today.
  • My sister and her family for an amusing dinner-table conversation.
There are probably others, but let's not get carried away.

Sunday, November 1, 2015

How long?

Probably it is the fault of the time change, but I am grieving.

I woke up early, thought of my so-called life (not the TV show, though Claire Danes is awesome) and started crying for my life that never was.

I have had the genetic failure of Friedreich's ataxia all my life. I have known consciously that there was something wrong with me for 25 years and probably longer subconsciously.

When a high-school senior is asked if he is disabled by an interviewer for Duke University simply because the senior does not play sports, even a self-confident senior might be shaken. If that senior is me, lord knows what damage it inflicted. Man, if that was now, what a lawsuit we'd have.

Anyway, this is not new.

Wouldn't I be better off accepting things and not mourning?

I need a dog.

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