As Time Goes By

So many things on my mind tonight. Particularly to do with the Disabled who are "newly" so, and have to deal with end-of-life concerns on top of what they deal with on a daily basis! Being disabled is daunting enough I imagine, if you've never had any previous concerns about getting from A to B, or have understandably taken your freedom of movement for granted. Having gone to physical therapy recently and decided on my own to cut the number of visits by a fourth, and as one of the founding members or an active participant in several groups who deal with disabilities seen and unseen at various ages, I've come to some conclusions. The first of which is that I do not (and most likely will not) be one of those people "surprised" by getting older. I'm going to do like my grandmother does, and take everything in stride as it comes, and never make a big deal about anything, but not ever ignore anything new, either. Or at least do my best not to let anything slide. This is something I realized during my last rout of physical therapy sessions; I'm probably going to need to periodically revisit those facilities for the rest of my life; it's not something I'm ever going to NOT need. And it's also good to get a refresher course on the best exercises and possible procedures to help with my CP. Although in terms of procedures, I've spoken to a number of doctors about a number of things, from an APO to an implanted pump that releases muscle relaxant (eek!) and heard pretty much the same thing from all of them--I'm doing far too well on my own to need more than I've got. There is so much freedom in that. I can do something on my own to ensure that I live life the way I want to. I don't have to let a device or a pill control my life! And honestly, the very idea of such a thing is terrifying. I would rather lose my mobility than have to rely on bulky, marginally effective braces or any kind of apparatus that qualifies me as a "bionic woman". My sweet Michael was the same. Although he WAS wheelchair bound and relatively dependent on basic accommodations (ADA specified bed levels in hotel rooms, ramps to the side walk, a "trapeze" above his bed to pull himself into a sitting position for the transfer to his wheelchair in the morning) for the most part, he wanted to be DOING something himself. He didn't trust a lot of those accommodations blindly with all of his heart, as some people seem to think we should. He approached them with a healthy skepticism:) As do I. Which is one reason it confuses and somewhat offends me that there are those Able people who assume we don't want our names in front of anything or on any work that identifies us as disabled. It's who we are...right? Like your abilities define you, or your culture and heritage define us. I've watched movies about the courageous struggles of the tenacious disabled and not batted an eyelash when others around me were in tears. Why? Because for me, it's just the story of how I grew up. It is NOT, as some assume, that I have no empathy, or am incapable of feeling others' pain/suffering with them. On the contrary. I feel it so acutely I have to put it arm's length, or my own heart will break. This brings be back to end of life concerns. Maybe it's far too early in my own life to be thinking about it, having not even technically reached middle age. But what if..what if it's not too early? None of us know for sure when our time is to come. How will it be when the clock runs out for us? Lately it occurs to me that I think about these things now because I had to at a very young age. When some kids wanted to learn a bike in the next year, I just wanted to GET to the next year. When others were learning to drive, I was re-learning fine motor skills. In my early 20s I wasn't "clubbing" with the other girls in skimpy outfits trying to land a boyfriend or learn their drinking limitations, i was dealing with my physical limitations, which were numerous and embarrassing. Maybe this is how I'll enter into old age "prepared" as so few are. Although I will definitely hand it to the majority of older (than me) people in my church, aging gracefully and handling new problems in their health and lifestyle with poise. I can't imagine what it must be like for some, confronting their own fragility for the first time ever, who go out for a rare evening of entertainment at the theater--for example--and find the building is without an accessible entrance at street level! Humiliating AND frustrating. And whereas I would have no problem whatsoever, wrangling strangers for help as they entered, relying on their kindness to see me to where I had to go--that's only because it's what I've always done. If the situation were entirely new to me, I shudder to think how I'd handle it. Maybe that's why there's the odd case of some one in a wheel chair freezing to death outside their apartment building as they waited for something to happen that would help them enter. They're not familiar with the reality that those of us with different abilities have to help OURSELVES, much of the time, in this society. The elderly are a very similar, very unfortunate case. No one gives you a manual for how to handle physical challenges as you age. You have to discover how to deal with them on your own. This is what I've been contemplating a LOT this week. Where will I be in 15, 20 years--if THAT long? Who will be MY mouthpiece, if I can't speak for myself? The short and simple answer is I can't depend on anyone else. There may very well not BE anyone else. So it's up to me, and I've got to start preparing:)