Monday, October 29, 2012


Lots of time spent "on the rack" since we last chatted. With two exceptions, not a lot accomplished. Unless you count sleeping when you need to sleep as an accomplishment... which, in its own way, I suppose it is.

Accomplishment 1: Attended, enjoyed, survived, the LA Tea Festival. Got some Darjeeling-produced oolong--definitely different from the Taiwanese variety. Got some questions answered about matcha, the powdered tea used in the Japanese tea ceremony. Picked up a new variety of pu-erh, a raw variety, much gentler than the very-processed versions I'm used to.

My wife was very generous about pushing me around in the transport chair, all day. However, she did share that she was not particularly excited about pushing me around a lot (certainly "that much") and if we're going to be doing this sort of thing together, I'll need to provide my own locomotive power. Now, I can still with-the-walker walk, but not quickly, not well (depending on the day), and walking at all causes bladder-activation ... "issues," let's call them. We've chatted about those before, they're not "worse" as such, but they are more fickle, and they make traveling anywhere, even around the house to get a cookie, more problematic. Very problematic.

So, although I do not want to "make the shift" away from my walker to a wheel-it-myself wheelchair, it's probably going to be a good idea to have one available, if my wife and I are going to spend any time "in the world" together for longer than "hobble to the restaurant and sit down." Yes, I can hear the objections: you don't want to stop using the walker, walking at all is good exercise, use it or lose it, and all that. Well, "use it or lose it" translates all too easily to "use it and lose it," where my bladder is concerned. Great. Gotta go shopping for more equipment, maybe... I'll talk to my MD about this when I next see him.

Accomplishment 2: I assisted with the 100th anniversary service of a church at which I used to be music director. Across the street from which, I used to live (sound like Yoda, I appear to). Underneath and inside the organ of which, I spent way too many hours. This church was a huge part of my life, for many years. It's still a nice place, the people are and have always been very nice.

The community is no longer what it used to be; time, change, and the way of all flesh, and all that sort of thing, and it's Just Not The Same as it used to be. Hasn't changed, in many ways; has completely changed in others. And yet, I could see what it is now, what it is no longer, what it has become, and how it is the same and yet different, how it is still "home" but isn't really "mine" any longer, even though the people still love me and I still love them... but it's OK to let it go. Really. It's sad to see it go, but it's OK to let it go. Some parts of it make me very sad to see go, but there's nothing to be done, there are no choices, those parts are just plain gone, and all that's left for us is to make the best of them, because (as the pastors would say), that's good custodianship: make the best use of what you have to meet the needs you have, and meet the important needs first. Period.

And last night, sitting under the moon and thinking about yesterday's evens, I realized... doesn't this apply to the M.S. journey? To our human journey? Things change, whether we want them to or not. Be truthful about how you feel, but also about the way things are, here and now. Be a good custodian; yeah it'd be nice if you could use what you got to make things "the way they were," but that very well might not meet the needs of the way things are, and the good custodian of your treasure will put what you have to meet today's needs, rather than the needs of the past that exists only in nostalgia. And as a spiritual counselor told me once, there are many paths to enlightenment, but "nostalgia" isn't one of them.

But it's hard to speak the truth, sometimes. Especially when the truth is, "Time to let it go."

We're told so often, "Don't give up!" But speaking the truth and releasing the no-longer-necessary is hardly defeat. That's a very important lesson, a very important gift; and I think, a gift that I need to be more open to receive. I received it well, at this recent visit to a home of bygone days... I think there are still a few (more than a few) things that still need to be sent on their way, so I can better travel my current journey. Walker, or wheelchair.


Katja said...

How's your upper body strength? Many folks with MS find that a self-propelled manual wheelchair does not work well for them in the long run. Consider a scooter or power chair as well.

Diane J Standiford said...

I have learned that embracing my MS is better than fighting. Shifting to a wheelchair, then scooter, now power chair, all gave me MORE strength and energy. I kept each previous aid to use when I could, it is a sad myth that using mobility devices makes your MS worse, you muscles and bones weaker. EXERCISE, replace, embrace.

Diane J Standiford said...

People think we WANT to be in a wheel chair over a walker? A walker over a cane? A cane over slow limp? NO, our body DEMANDS what we use, exercise can continue forever. Glad you had a good time!
I shall add your most wonderful blog to a "Best of.." on my blog--to be rolled out, er, debuted, soon. TA-DA! Brava!

Robert Parker said...

Thank you all!

Big question about "upper body strength": the muscles needed to draw the Japanese bow are quite flooby, but everything else seems to be OK. I borrowed a wheel-it-yourself wheelchair when I went to my college reunion, just to see what it was like, and it was basically no problem. I had a power chair where I used to work, that was GREAT; the place where I bought the walker/transport chair has a MUCH lighter transport chair... I'm thinking of getting that, but the real test will be "can I pick it up myself and put it in the back of my truck?" If I can... I'll probably get it. I'm gonna call the M.S. Society and see what they recommend, paying-for-it-wise (people have told me that some magical entity will pay for some kind of wheelchair, but I know nothing about this other than heresay at this point). A friend of mine said that the way you choose a motorcycle is to make sure you can pick it up yourself, because as he said, "You're gonna lay it down. Eventually." So, no matter what I get, I gotta be able to put it into the truck myself, and then somehow get back into the driver's seat, because this particular vehicle ain't supporting any other method for me to transport the chair, or me.