Into the danger zone

My little sister pushed me far outside the comfort zone yesterday, but it worked out well and was fun even if I missed the Dr. Who season finale and had to stay up till 12:30 to watch the rerun.

It was sad, too, leaving me teary at the end as all the Doctor's friends went off with others and he was left alone but soldiers on.

The evening started with what was just a little get-together at my sister's (yes, right next-door to my parents), two other couples with their kids. Nothing big, my sister had told me, we'll just order pizza.

And we did, but then one of the couples had to leave to put their kids to bed. They live like three houses away so everyone else was like: Oh, we'll just bring the pizza to your house.

I said OK, I'd go but even as I said it I was getting scared and worried. I am using my power chair a lot nowadays so I was thinking: What if the backyard is inaccessible, what if I get bored, what if I have to go to the bathroom, will I get to see Dr. Who?

No one seemed to worry, so we went. The backyard was no problem, but people were up on a deck that was up six stairs. My sister offered to run home and get my manual chair so the guys there could lift me on to the deck. I did not want to, thinking I might want to leave to see Dr. Who.

That seemed OK. People sat on coolers or the steps or broke out lawn chairs and we sat in the yard. People brought me pizza, Claren water, and just made me feel comfortable.

I did not even go home early to watch Dr. Who even though it would have been easier to hear the Doctor and his gang; they have close captioning.

The secret life of Matthew Mitty

I am having kind of a Walter Mitty week.

Sort of. I just re-read the story to make sure I was correct in my comparison. And well, I am not hen-pecked nor a little misogynistic (although that might be Thurber not Mitty).

I am also not thinking of exciting and adventurous jobs necessarily, just new ones.

I decided I wanted to be an architect after meeting our home designer
Tuesday.

On Wednesday, I wanted to gain fame and acclaim as a world-renowned para-equestrian dressage rider.

I went to the aquarium Thursday with Mom, my little sister and her kids, and the trip brought rapid-fire job dreams.

At 11:31 a.m., I wanted to be a dolphin trainer. The dolphin show started at 11:30. Sure, they said you had to know how to swim, but it just looked so fun and cool that learning to swim might be worth it. And the dolphins totally reminded me of Claren. When the treats came out, they often seemed to just run through all the tricks in their repertoire to get the fish.

The best part was when the trainer dived in and was interacting with the dolphin and at the end the dolphin held her feet or something and swam ... fast. The trainer looked like the front end of a motor boat. And the end was cool, too. All the trainers were getting their dolphins to do random stuff. One trainer was doing the twist, and the dolphin started twisting.

But then we started looking at fish.

I have loved fish since I was a kid and my brother had guppies. I worked at a pet store growing up (well, I did after Mom walked into the pet store, which had a Help Wanted sign in the window but had just turned me down, and asked the owner why don't you hire my son?). I had at my peak about 100 gallons of aquarium water flowing in Mom and Dad's. That was cool. And I realized today that I could stare at fish all day. I could totally be an ichthyologist.

I like my job. I am not sure what all these second thoughts are about. And I don't know what to do about them. I mean Walter Mitty ends with him dreaming of facing a firing squad with no blindfold. I don't want to keep my job but wind up dreaming myself dead.

Happy birthday

Phrase or two redacted at little sister's demand.

I had a good birthday yesterday even if it didn't start with a visit from the Birthday Bird. Apparently, the Birthday Bird was stumped by the irregular store hours of Great Harvest.

It ended with Mom and Dad playing their grandchildren in Wii tennis. We had atari and all sorts of games growing up. I never saw either of my parents play.

I played a bunch of Wii earlier, learning that I am not cut out for boxing.

Before that the wheelchair technician came by to remove these brackets that daily killed my legs.

The first event was the best. It was a visit with the architect designing the new house. He is good

He seemed to go right along with the jokes of my brother-in-law about dumping my suite in the dark corner of the house and other thing. I am not sure if this is good or bad.

He was a little confused by one of the must-haves on my list for all the doors to be curtains. But my brother-in-law again came to my rescue: You remember the Brady Bunch episode when Greg had his own room with the beads? He really likes that.

Instead of a cool man-cave, I am probably going to get a disco.

The scary thing? I had like four other Brady Bunch references for the house. I was too embarrassed to make, which was just as well, I think.

What I really liked was that he said: What Matt needs for his suits is what we are trying to do with the rest of the house, too. He meant that doors and halls would be wide, not for me but for everyone.

Spur of the moment? Nope

I never wanted to swim until I could no longer get in the pool.

That's not quite true, I guess. I can still get in pools if there are a lot of people to help me or there is a lift. And the community center near work teaches swimming to wheelchair users and has a ramp or a lift.

So it is definitely doable, but spontaneity is gone from my life.

I decided I want to swim today when I watched my niece and nephew take lessons from a college student who I totally did not find cute because that would make me a dirty old man. But I could do nothing about it -- the swimming or the un-cute coed.

I couldn't jump in. Heck, I couldn't even put my feet in the water without significant assistance just to get on the ground and take off my shoes and socks. And I probably would have gotten in more trouble from one of the child lifeguards from Eastern Europe. One had earlier tried to boot Claren.

A friend who uses a chair but also walks some told me that she has gone to get ready to use her pool on her building's roof only to have it raining by the time she gets ready.

It takes so much planning to live as a person with Friedreich's ataxia. I know I have mentioned it once or twice before. And it is not just your life you are planning: You need to plan who will assist you and how.

I guess I'd just like to fly by the seat of my pants, but I am sure I'd wind up with a wedgie.

I can do it

My brother who uses a wheelchair went to a retirement party last week with his wife. He said something like: "I didn't have to do anything." Apparently, people were helping him with everything.

"You want to tell them, 'let me do something for myself,'" he added before saying that he wouldn't actually say that.

The darn do-gooders he faced that night might have been servers and waiters who are paid to assist people. What do you think or say when the unwanted and unneeded assistance comes from people who aren't paid to do it and also aren't related? (Related people are a whole nother ball game and discussing them would take me into a minefield that could leave me living at a local Days Inn for the present and without a home to live in for the future, so I will put it aside for now.)

I actually had two recent experiences with unnecessary help and I still don't know what to think. On the one hand, I am just overwhelmed at the kindness or grace or whatever that these people are showing. On the other hand, I am like my brother: "Let me do something for myself."

A few weeks ago, my boss brought me hot water for my morning tea, as he always does, which alone shows his kindness. But I knocked the cup over all over my desk. He heard it spill, asked if i was OK (I was), then came around and said I'll get you some new water and clean this up.

I tried telling him I could do it. In fact I had spilled the morning before when he wasn't there and had cleaned it all up with a handful of newspapers and two old napkins.

He would hear none of it. He brought back a big paper towel roll and a bowl full of water for him to rinse the paper towels in. And cleaned it. My intern even tried to get in on the act when my boss was getting the paper towels, offering to help.

A few nights later I was having dinner with Mom and Dad and a cousin and his fiance. I asked her to pass me the watermelon. She did and I grabbed the spoon in the bowl to dish some on to my plate. But the spoon slipped out of my grip, didn't fall out of the bowl or anything.

But she just very matter-of-factly took the bowl and motioned for my plate and served me the watermelon.

Both of these things I could easily do. I would not even break a sweat. Shouldn't I do what I can because there is so so much I can't? But how can I turn away help?