Saturday, May 30, 2015


My little fist costume is lame next to these guys.
Once again, Awesome Con did not disappoint. John and I only stayed for a few hours, but I could have stayed for hours just watching people. I am also curious about the results of the panel: What superhero would make the best president? So maybe next year I spend the day there.

I only sort of dressed up.

Steven Hawking appears in a Simpsons episode with a souped up wheelchair,  complete with boxing glove. So I got a boxing glove, which Kenny is still afraid of because my niece taunts him with it. The pimped chair has rocket motors on the outside of the wheels. I didn't want them because it is hard enough to go through crowds with a chair. I didn't want to make it worse. Same thing with the helicopter.

But I got to see my nephew from Boston and had a blast.

Wednesday, May 27, 2015

Stinking creativity

One of my big bosses favors a theory he read about in a book called Steal like an Artist. The idea is that by limiting your color palette you unlock your creativity.

My wheelchair limits my palette significantly, so you'd think I was the most creative boy in school. What it actually meant this week was being stuck in a stinky bathroom stall.

When I got to work Tuesday, the whole bathroom smelled like something died in the pipes and was stuck there. After I flushed the toilet in the wheelchair stall, the smell dissipated a bit, but it became clear that the dead rat was in the pipes leading to the toilet in the wheelchair stall.

How do you complain that a bathroom is stinky? I was at a loss, so I just held my breath and hoped it would be OK today.

It wasn't.

Finally, I contacted the building manager and said: "I know it is odd to complain a bathroom smells, but ..." They cleaned it, and it was fine.

The stink did have one benefit: No interlopers. Who wants to sit on a nasty-smelling toilet when you don't have to? I went back after it was clean, and someone was in there.

I used my unlocked creativity to devise befitting tortures for him.

Monday, May 25, 2015

Things fall apart

Having read TS Eliot and Chinua Achebe, I know things fall apart.  I just wish I wasn't one of those things.

Memorial Day is always hard. I know it. Everyone knows it.

I read most of the day so that kept sorrow at bay for a bit. But as I got settled for the parade, Claren wandered back into the house, meaning this was the first parade without her at my side in years.

I am not sure I even want to dress up for Awesome Con.

Wednesday, May 20, 2015

Don Johnsoning it, sort of

I am not a huge fan of Brooklyn Nine-Nine. It makes me laugh, but I am easily annoyed by Andy Samberg. It comes on right after The Simpsons, though, and the strong cast includes Andre Braugher, so sometimes I watch it.

But credit where it's due: It helped me survive plunging my hand in the toilet at work yesterday.

In the episode Sunday, Andy has to go undercover at a fancy restaurant, but the only sport coat available is too big. Someone tells him to Don Johnson it. They riff on that a little, then to the strains of Jan Hammer, Andy walks into the restaurant with the sleeves of the sport coat pushed up.

On Tuesday, I went to the bathroom (thankfully just making my bladder gladder) and as I got up I slipped. To keep from falling I put out my hand to find purchase. Well, the purchase I found was in the toilet bowl.

Somehow, I did keep from falling as I jerked my arm violently out of the water. I even managed to sit back in my chair.

Everything was wet. The floor, my sleeve and most of my shirt, parts of my chair ...

I was nearly ready to leave for the day, so I just rolled up my sleeve, Don Johnsoning it as much as I ever do.  Thank goodness I don't wear sport coats.

Sunday, May 17, 2015

Can't breathe

I learned a few things Friday night at the second sleep study -- this one to gauge the proper use of the mark.
  • I really need a mask. At the first sleep test, I woke up 11 times an hour because of respiratory events. My oxygen, 98% when awake, dipped to  low of 81% when asleep.
  • I can't tolerate the mask. We tried five types, even just nose ones though I breathe  lot through my mouth. They said they use a chinstrap to keep my mouth closed. Yikes. Fortunately, they never got as far as the chinstrap. I choked even before that. The nose ones blew air up my nose, which isn't clear. I could breathe with the full masks but I got scared of having it on. It felt wrong.
  • Even if an tolerate it, I don't foresee being able to do or undo myself.
So it wasn't a fun night. Mom will  call the sleep doc tomorrow to figure out options.

Wednesday, May 13, 2015


I have sleep apnea and have to go back for another overnight study.

This diagnosis is not really a surprise. I snore violently. I am always tired. And my body has proved remarkably good at failing in the most basic things, walking, hearing, peeing -- why should breathing be different?

I am not ignorant that if they treat this successfully and if it makes me less tired, I would regain two hours of my life that I now each day.

But, when you are dealing with my body, those are big ifs. Mostly, I find this insanely defeating. Yet another part of my body crumbles.

Monday, May 11, 2015

Matty and the CHOPper Bunch

I forgot one thing about my visit to Children's Hospital of Philadelphia, which is known as CHOP: I am part of their tracking study. 

Not really a big deal. They took some blood and a cheek swab, and had me do an evil pegboard test and a weird eye test. That's it.

I'll go back annually or so they can see what it looks like to kick FA ass. It'll also give me a chance to ask where them treatments are.

Friday, May 8, 2015

The things I let the medical establishment do to me

And you can't see the ones on my chest, legs
and finger.
We got to the sleep study 15 minutes early because a certain little sister kept saying I'd be late if I left when Mom and I wanted. Actually, we'd have still been early.

But we got there, checked in, and waited.

Then a technician came and took us to a room, and we waited some more.

They put a hospital bed in for me, so Mom got to sleep in the double-bed. I got in it, and they hooked me up to all sorts of sensors. And then I went to sleep, sort of. I did not sleep well.

It was my first night in a hospital since I was born.

The technician was great, though. She watches you by video camera, and she heard me calling for Mom to turn on a light before Mom did.

If something was real bad, she said she'd put me in touch with the on-call doctor, but apparently it wasn't so I'll wait at least a week for my doctor to get the results. Then we can decide if I have sleep apnea.

Tuesday, May 5, 2015

Long day's journey does me right

The doctor's visit was good.

He gave me some medicine for my restless legs (well, a prescription). And it works! And it no longer makes me woozy.

And apparently, I am very, very, very unlikely to have FA-related cardiac problems. This pleased Mom greatly, but cardiac problems aren't a big worry for me.

He seemed unconcerned about my stomach issues, or untroubled by them. He did not think them indicative of great woe (just mediocre. HA, I kid).

And he thought I would benefit from hearing aids. I am a bit skeptical of this, but it would be awesome. Hearing was actually an area he thought we could do something about to improve my quality of life. He is going to reach out to some other doctors who did a hearing study on me and see what they recommend.

The other area he thought they could improve was sleeping. He did so with the restless leg medicine, but he also suggested a sleep study. I snore badly, and sleep apnea is not uncommon in FA patients. This  made the trip not a total bitter bust as sleep apnea can kill you.

Finally, he talked a lot about the treatments that are in the pipeline. I would be leery of doing that if I were a doctor to avoid creating false. Maybe he really thinks at least one will pan out.

I go for the sleep study Thursday.

PS: The doctor is Doctor Lynch at Children's Hospital of Philadelphia.

Saturday, May 2, 2015


I know I need to talk about the doctor visit but other stuff keeps popping up.

For instance, do you think  my teleworking brother-in-law was the first person to step away from a teleconference to pick a naked relative up off the floor?

Then last night I did start writing about the visit, but I had a situation that required Mom and a change of clothes.

Then today, I woke up after sleeping through the night -- with nary a leg kick.

This was, I assume, because of a medicine the doctor prescribed.

The only problem? I have felt off the whole day.

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