Tuesday, February 19, 2013

TMEA, part 2

It has been a while since I talked (typed?) about physical stuff, and there were plenty of "physical" issues in my trip to San Antonio, so... here we go.

As those of you who've read me before probably remember, one of my Medical Team has put me on a "no dairy; sixty-five underlines under 'no' and 'no means no' forever!" diet. Even in multi-cultural Southern California that's tricky enough when you're not in a very other-culture-proud-and-powerful community... I mean, c'mon, they put dairy in hot dogs. In potato chips. It's even listed as an ingredient in spinach salad sold in a Japanese market. Lord knows dairy is in anything even vaguely French or Italian, let's not talk Latin-American cheese-in-EVERYTHING dishes. So, unless I'm hanging out in my regular haunts in the Japanese or Taiwanese or Shanghainese communities, I'm pretty much SOL where it comes to "dairy free."

San Antonio is many things, but a multicultural hotbed, it ain't. So, fun though the convention was, there wasn't a lot of eating being done. Since I pretty much don't feel hunger any more, at least I don't suffer "more" from not being able to eat much, but snagging a lunch of nuts because they've got protein and are immune (mostly) to stealth-protein addition, that ain't what I call "vacation fun."

The wheelchair was a constant source of "well, isn't that interesting" discoveries. Lets see, in no particular order, a few of those discoveries:

  1. Anything touted to be "handicap accessible" almost always isn't. Including, unfortunately, public places. Like streets.
  2. Wheelchairs don't like thresholds.
  3. Wheelchairs don't like doors that push against them. They especially don't like doors that push so hard, their "pilots" can't both open the door and position the chair so that it can move through it, much less actually push the chair through the door.
  4. Most doors are too narrow to move through. Even doors to "handicap stalls" in bathrooms.  At least one stall in an airport was almost too small to get the wheelchair inside, and was definitely too small to put the chair somewhere from which you could easily transfer out to the toilet. Many, many "well isn't that interesting" adventures getting into/out of bathroom stalls, much less doing the whole "transfer" thing.
  5. The bathtub in my hotel room had an almost-long-enough bathtub, and I figured what the heck, it has been a long time, let's try it. Well, it definitely wasn't quite long enough to really relax, but it was a good experiment. I kept my head out of the warm water, and my torso/core (per my MD's recommendations) and just let my legs soak. A very interesting conclusion: My muscles loved it. My nervous system, not so much. (Carnival of M.S. Bloggers #133 has some interesting thoughts about that.) I was nearly unable to control my legs enough to get out of the tub. And here's the really interesting bit: My muscles felt "improved" for several days; the change faded away as time went on, but my muscles definitely felt better for having been so wonderfully warmed. The nervous "degeneration" also ran for days... fortunately, my nervous system recovered faster than my muscles started aching again. So, at least the "benefit" outlasted the "cost."
  6. "Handicap-accesible" hotel rooms vary in the helpfulness of their accommodations of our handicappedness.  The rails on the walls of the tub/shower stall? Really really helpful. Rails to help you get into and out of the shower? Not there; I had to grab all sorts of odd things and hope for the best. Fortunately, "the best" is all that happened, but not like it didn't get really close to less-than-the-best happening. And the toilet? No rails, no NOTHING. How I got up and down and around that, I still have no idea. But as helpful as the shower rails were, there weren't any other rails, and I was pretty much on my own. Completely.
The number-one hardest-to-explain lesson I learned from being all by myself for about a week with only a wheelchair for any sort of transportation (not counting the occasional cab ride) is that any exchange that begins with someone saying "Oh, I'm sure you'll be able to make it, I'm sure they have stuff that'll accommodate you," can only be followed with "We don't know that. There's no way to know that. I won't know that until I get there." 

And that last bit is very hard for me. Because I don't want to spend the time and energy to go somewhere completely by myself that I know I won't be able to manage without help, and I see no point in going somewhere to discover "You're alone? No, they can't accommodate you. You're screwed." Especially if you're really screwed and can't backtrack (for example, taking a long jaunt to find that the last 10% is impassible, which means you have to then turn around and repeat the first 90% without having had any fun at the end of the trip). Or worse, if like a lot of San Antonio looked like it was going to do, getting halfway there would take you directly to "stuck." And worse, "stuck in every direction." So you're not only stuck, you're not getting un-stuck enough to go back the way you came.

So, what am I left with from this experience?

Going somewhere new and flat, that's been built recently enough that you KNOW it's very ADA friendly, or that has to accommodate a lot of all sorts of stuff getting carted around, like the Convention Center and attached new, modern hotels? Safe! Local "color" spots (we won't even talk about the spit-take-worthy name "RiverWALK") that are old and quaint? Don't waste your time, unless you have a pusher. You're getting stuck... somewhere, maybe everywhere, all-sorts-of-where.

And you won't know what you're going to get until you try it. That's not the "control freak" talking; I'm not a control freak. I just have only so much energy and so much strength and I've been stuck places that weren't all that bad, but being stuck and unable to do anything about it is no fun. At all.

And on the Neurological Highway... you want all the fun you can get. And you especially don't want anti-fun. "Normal" is hard enough as it is.

1 comment:

Muffie said...

Oh rats! Just when I thought everything was just hunky-dory down there in Texasland, I find out it's no different than anywhere else for a disabled person. Sorry you encountered so many speed bumps along the way.