Monday, May 28, 2012

Yale journeys, Yale epiphanies

To paraphrase Dr. Seuss, "Oh, the places I've gone..."

Last weekend, I went to my 30th Yale reunion. I spent four years there as an undergrad, one year there as an employee, and two more years as both an employee and a master's degree student. I've crawled, walked, and staggered all over this campus, and I know it very well. It's full of architectural marvels, many of them in a magnificent Gothic style.

But let me tell you, seeing it from a wheelchair puts an entirely new perspective, and dare I say a whole new angle, on everything. Everything seems ever so much taller. Really, really, much taller.

It was a huge adventure. The first time that—all by myself—I've taken an airplane, and crossed the country, since the onset of The Disease. No wife-provided "safety net." Just me. And although I did learn a lot of things—many of them marvelous, many of them not exactly welcome but necessary nonetheless—I made it.

Highlights pertinent to the M.S. journey...

Well, my classmates were unbelievably sympathetic and generous. They didn't just offer, they insisted, on pushing my wheelchair. A couple of them had learned how by helping out their fathers, one of whom was also an One particularly delightfully-skilled wheelchair pilot/navigator was unbelievably adept as missing road hazards and pseudo-ADA-isms, avoiding bumps, divots, and other navigational nasties. "I notice infrastructure," she said... and boy, was she ever good at it. Comes from her work with, and familiarity with, the Mary Whalen, I suppose... A ship that she described to me as "She has moxie." Well, if that's keeping this nautical wonder going, it certainly should be a worthy inspiration for me.

Another classmate, a wicked good lawyer, explained his concept of the magic words all of us M.S.ers eventually encounter at our workplaces: "reasonable accommodation." He says that even though that's the official legal term, it should really be (because it really means) "reasonable compromise." There's no working around things like an NFL quarterback tragically losing his throwing arm, but for things like "I can still do what I used to do, but not the way I used to do it"... That's where compromise comes in:  For example, the employer/supervisor might prefer that you should work at a specific desk in a specific office at a specific schedule, but if you can do precisely the same work at a different time and location, without any degradation in work-product output—and more importantly, making that change is precisely what makes it possible for you to maintain your work product at the same level that you used to produce when you were unfettered by M.S.—well, sucking up whatever discomfort they're suffering at you not working in their preferred location and time, a change which is precisely what enables you to keep working at your pre-disease levels and maintain your own satisfaction at still being able to work the way you always used to, diseased or not, is precisely what "compromise" means. And really, simply on a "human" level, if they don't like the change but as far as your output as an employee is concerned, the only difference it makes is that you can continue to create that output, they're the only ones who are suffering when that change is made, aren't they? Not a bad compromise, I'd say...

It's a pity when their unwillingness to make the very compromise that would makes your life more bearable. But that's another story.

And, for my "convenience," dear B-san (you remember from past posts, my dysfunctional bladder) has developed a new bad habit. Doesn't announce his need to be emptied with anything more than barely noticeable hints—and given his past history of duplicity, these "hints" are hardly anything that would make you think he actually meant that something needed doing—but in a matter of seconds, he can shift gears from might-as-well-be-silent to SCREAMING in panic, and then... for my convenience... leaking. Great, I think... the M.S. has stolen my ability to play the organ, to stand while I'm holding my Japanese bow, to stand before my class when I speak to them, but this? You're going for a pee joke? That's the best you can do?

There was much more that can be told of that weekend... Moments of unbelievable beauty, generosity, kindness, and the love that only long-time friends can hold for one another in their hearts... But I leave you with a final bit of photographic humor, courtesy of who knows what perpetrators (probably an undergraduate, it's the sort of thing we Yalies delight in doing). A very clear depiction of something that all of us M.S.ers learn all too quickly, especially those of us who have been "accessorized"...

People who don't travel our path, especially those who haven't been forced to travel that path in the vehicles we're forced to rely upon... they just don't understand what we have to deal with. They just... don't... get it.

And really, I promise you... if you'll forgive the turn of phrase, I just stumbled upon this. It was there, waiting for me.

If we didn't already know it, from our other experiences on the M.S. Highway... the Universe really does have the most amazing sense of humor, does it not?


Katja said...

Congratulations on your successful trip!

Muffie said...

Robert, I admire your bravery, both in solo travel and in meeting old friends, who knew you before MS. So glad that most things went well, and sorry that "B-san" continues to give you problems. The photo is quite funny, but really isn't that the way things seem for us sometimes?