Tam’s Ramblings

I have a neurological condition that causes simple things, like walking, to require actual thought on my part.  Walking also, more often than not, causes fairly significant pain.  The same condition, unfortunately, also affects my arms and my stamina.  So everywhere I go, I’m left with a difficult decision:  Which ambulatory aids will serve me best right now?

Most of the time, these days, my legs are mostly functional and my pain levels are nowhere near what they used to be.  This means that on good days I can walk a little ways before I have to be worried about it.  A trip into the local post office or convenience store can usually be done without even taking my cane.  A trip to CVS or Walgreens, which aren’t very large here, and have carts I can lean on, can often be done on foot.  A trip to the grocery store or Walmart, however, is impossible without my wheelchair, even on a good day.  I can usually walk into a restaurant with my cane, since I’ll be sitting for a bit between, and walk back out with no problem.  A movie, however, means sitting in one cramped spot for over an hour, so I know I won’t be able to walk back out.

Most places fall somewhere in between, and I usually have to take a minute, upon arriving, to assess the best solution.  This assessment  involves things like the amount of walking I expect, the terrain, the weather (wheelchairs in rain or snow kind suck, but leaning on a cane with a wet tip can be disastrous), how sore my legs are, how sore my arms are, how tired I am (the wheelchair, though it’s ultra-lightweight, is still too heavy for me some days), and, on bad days, "how badly do I really need to do this, anyway?" (I frequently get to the grocery store parking lot and just give up and drive home).  

Whenever I go somewhere new, and the size of the building/distance I have to walk isn’t readily discernible from the parking lot, I have a policy that I always take my wheelchair.  The very last thing I want is to go somewhere new and get stuck, and have to try to send some stranger to get my wheelchair for me, or end up sitting somewhere crying in pain, too embarrassed to ask for help.  This means that the vast majority of people, upon meeting me for the first time, meet me in the chair.

My chair is not one of those fold-up hospital things.  I played wheelchair basketball, quite seriously, in college, and my chair is a custom-fit, ultra-lightweight sports frame with built in shock absorbers and triple-cross spokes.  It’s not the kind of chair you see every day, unless you live on a college campus or have an acquaintance who’s been wheelchair-bound for an extended period.  Upon seeing me in this chair, most people seem to assume that I am paraplegic.  I usually try to let people know that I can walk, especially if I think I might see them again in circumstances where I’m not in my chair.  This never seems to sink in, though.

Today, for instance, I went to my ENT appointment.  It was raining.  The ENT is inside an office in a larger building, with insufficient handicapped parking space.  Every time I’d been there I’d taken my chair in, because the doors on that building are heavy and hard to open when I’m standing, and the walk to the office is a decent distance.  But no handicapped parking means no striped-zone beside my car, which means I have to worry about whether I’ll be able to get my chair back into my car when I come back out.  My legs are working pretty well today, and I had energy despite running on 2 hours’ sleep, so I decided it made more sense to walk in today.

The people in his office had no clue who I was.  They even made me give them my insurance cards again, which they’ve never asked for since my first visit there.  I think they were doubting who I was, I’m surprised they didn’t make me show ID.  When the nurse (who I know I had dealings with there just a few weeks ago) took me to get an xray she wondered why I was worried about standing still for it/why I wanted to lean on something.  The only person there who recognized me was the doctor, who asked where my machine was today lol

It was a bizarre experience for me.  I’m the one that usually doesn’t recognize people.  I am at least partially face-blind, I can often recognize people in context by their hair, glasses, and other unique features, but not usually by their faces, and if I see them outside of their normal domain I usually have no clue who they are.

People generally tend to recognize me, though.  I’m that fat chick in the cool-looking wheelchair, or I’m that girl that  hobbles around on the  cane with the funky handle (my canes have fitted quad handles cuz I can’t grip a normal cane properly), or I’m that lady with the weird leg braces.

It was quite an odd experience to have the tables turned.  

Usually, if I show up walking around someone who hasn’t seen me out of the chair before they do a double-take, they give me a perplexed look and sometimes ask if I have a sister.  If I show up in a chair around someone that’s only seen me walking/hobbling/on crutches/with cane, they look horrified and ask me what happened (despite the fact that I warn nearly everyone I expect to see again that I use a chair quite a bit, that never seems to sink in either until they see it the first time, and often not even then).  I’m used to surprising people in these ways.  But it’s very rare to not be recognized at all because of the change in ambulation.

It was a nice bit of comic relief in my day, but it really didn’t make up for the giant nasal scope the doctor tried to ram through my brain.