going

I remember exactly how I felt this time last year when I was in a flurry of travels. End of summer beach week, two trips to Connecticut, and a cross-country Southwest Amtrak adventure. I believed the end of opportunity was impending and I wanted to make hay while the sun shone. Shined. (I don’t like “shone” there, but I think it should be. Is this breaking the third wall? This is not a play, so no.)

Then, in April, we managed the Northwest Amtrak trip with Mom...so my sense of impending closure was a little premature, maybe. Or maybe not. Things are and were closing in. Yet here I am, a year + later, planning more comings and goings. But I’m nervous in a way that I wasn’t last year because Jeff’s world is shrinking and we can almost see it day to day. Shrinking, in this case, means...maybe...the breadth of meaningful ways in which he can interface with the world. Well, that’s vague and fraught with jargon-babble. That’s because this is really hard to describe. You sense it more than you quantify it.

Let’s try another way. There is a balance between the pleasure you get from visual stimuli (because of its meaning to you, because of the way the things you see pluck the strings of your intellect and emotions,) and the bothersomeness of the visual cacophony which is too much for you to sort in a pleasant way. As more data defects from the pleasure to the bother side of the scale, less is attempted. More is shut out. A new experience may have very limited worth, if it is even tolerable. (Yet, ironically, susceptibility to boredom still exists.)

Boredom, speaking of boredom, is a condition to which I am supremely susceptible, even though I was talking about Jeff. But now I’m talking about me. Yes, caregiving can get pretty boring. Honestly, I don’t know that it makes an owl’s hoot of difference to Jeff whether I create adventures. But for me it does. I have to try to squeeze what remains out of his capacity to go, see, experience, and I’m not sure how I’ll deal when the door closes to a pinpoint.

For now, I have ways to offset the disorientation. I hold onto him. The worse he gets, the closer I pull him. It seems like being close, held, and guided, with verbal commentary to distract him from the visuals which may be too fast to process, make any experience manageable for Jeff. At a park, at a pace that average folk might find tedious, we can stop, occupy a bench, and let the visuals pass by without multiplying the relative velocities by moving ourselves. Until we’re ready.

I don’t mind that every trip is experimental. That an aspect of each adventure we attempt is the gauging of whether or not we can keep managing such things. I don’t want to be stuck without even the option of half-baked adventures. So I’ll keep pushing this cart, until all 4 wheels fall off.