Tuesday, November 20, 2012


A day of discovery. Let's take it from the end of the day and back up to the beginning...

Ended the day at the herbalist's. It looks like an interesting formula, he's actually having me take it in capsules instead of just chugging it (my usual method) so that it'll get dispensed further down the GI tract (no fawning esophagus gonna make off with this formula). It smells nice enough, but herbalist said it would taste just awful, regardless of the smell (rhubarb and cinnamon, among other components), so I'm better off in more ways than one with the pills this time.

While I was there, I made some ... interesting ... discoveries about Life In A Wheelchair. I'm test-driving a self-propelled model, just to see how life with it compares against life with the walker/transport chair. Many things about it are actually quite superior (for one, I can move significantly faster in the self-propelled model, since my walking has gotten so crappy and slow). But the first nasty bit: the men's room was one of those "you need a key" doors, and yanking on the door while sitting in a chair with wheels provides highly educational examples of "equal and opposite reactions" but doesn't get the door opened. Or, if it gets opened, it doesn't open wide enough for you to enter. Haven't figured this one out yet... Being able to walk even a little bit means that I get out of the chair and wall-walk my way into the bathroom, and that works reasonably well enough, but I gotta be honest with you, I'm definitely disinterested in the continuous discovery of "ADA-compatible? Not a @#$#@$ chance!" architectural features. I imagine the architect/builder saying about all sorts of thing "Oh, that'll be fine, really." Well, it won't, and it isn't. So there.

Other discoveries, also wheelchair related... earlier in the day, I realized—finally—what was really my issue with the whole "teacher in a wheelchair" thing, in my final year at the high school. Had nothing to do with the "being stuck in a chair" experience. I just delivered two lectures to national conventions, from a chair. I was able to "connect with" every attendee. Being "stuck in a chair" meant nothing.

But in my final year in the classroom, the classroom was shaped (very roughly) like a triangle, with the screen at the base, the teacher's desk on one side of that base. Now, were I ambulatory, I would have found this a fun challenge. People on the other side of the room kinda losing focus? Walk over to them and engage them more directly. Someone in the back row losing interest? Walk back there, engage them directly. Something on the screen needs emphasis? Walk up to the screen and point at it. Poke at it. It would have been a very enjoyable challenge, using that room, ambulatorily.

Oh yeah, one more thing: It's a computer classroom, which means that every single person there is basically hiding behind a screen. All the more reason to be able to walk around and keep the students from being able to hide behind the screens.

Except when you're stuck in a chair, you're stuck in the chair. You can't move, much or sometimes at all. The most I was able to do was drive the chair to the front of the room under the screen and make the students turn the screens aside so they weren't being blocked from me during the lecture. An interesting challenge, one that I met quite successfully... when I was able to wheel to the center of the screen area and lecture. But if I wasn't doing a "just sit there and listen" lecture, I was stuck in a chair behind a desk: and thereby, for lack of a better word, handicapped.

I know you've all had the experience of "Everyone there thought it was fine, but you knew different, it could have been better; maybe much better." Well, that was the entire year. I really do know that I did a good job—a good job, reaching the students, making a difference in their lives. I was told that my students in classess not my own gave shout-outs to me, because I helped them so very much. In the teacher-evaluation assessments, I received some of the highest scores in the entire faculty. I know I did a good job. I know I did really important, meaningful things for my students. But I felt... handicapped.

And I think that today was the first time I really came to terms with that. Spoke the truth of what I felt, of what that limitation had meant—done—to me.

Or at least I began to come to terms with it... I probably need to do more processing on it. But, at least a very overdue process has finally begun.

You shall know the truth, and the truth shall set you free. (A chorus from the gospel musical Celebrate Life.)  I know Red and Courtney weren't thinking about M.S. when they wrote this, but... it is the truth.

And truth will set you free.

So, my friends... tell the truth. Don't be afraid. Speak the truth about what your condition means to you. What the changes you're experiencing mean. What the loss of what you have lost in those changes really means. How you really feel.

And truth will set you free.


Katja said...

I sympathize with your door opening struggles. The good news is that you'll probably get better at techniques like door opening over time. Dalhousie University's Wheelchair Skills website has a whole bunch of videos demonstrating a variety of wheelchair techniques: Wheelchair Skills Program

Muffie said...

This is so true. How often do we hear, "You shouldn't feel that way. We don't think of you as handicapped." But the problem is: WE ARE!! And we can't do a dang thing about it. So please don't say all those ooey-gooey nice things to try and make me feel better about my condition. I want to do more. I want to accomplish the things that are in my mind. I want to be the me I know is in there somewhere. I. Just. Can't. And all the sweet things that others tell me just won't make it right.
Sorry.... slithering off my soapbox here.


Robert Parker said...

Katja: THANK YOU! I am definitely going to check those out! Practicing correctly does wonderful things; leveraging what's known already to work will cut down on the "Well, guess I don't need to try THAT again" miscues.

Muffie: I really hear you. These (massive air quotes) "helpful" comments all fall into the same category as "Oh, it doesn't hurt that much." To which the answer I always want to give is, "How you you know?"