We have fallen back into the routine of the end of summer. Summer school is done, and J has accepted that there is a two-week break between the short schedule of ESY and the regular schedule that starts on the eighteenth. He knows that he has to put up with me, and he’s being generous about it…so far. Of course, it’s only Monday, and we have another Monday between now and the Monday when he returns to his beloved “I’m outta here at 6:15” groove.
The phone now rings less. We seem to be in a lull, a holding pattern before the next “hop on a plane” moment. We find ourselves having to deal with legal matters that make us feel uncomfortable. Legal questions regarding my father’s DNR come up from day to day, and I swing from wondering if he fully understood what he was asking for to being upset that he feels a life less independent than the one he had before the stroke is not worth the bother.
My father’s condition improves with each passing day, but we are uncertain as to how willing he really is to work at rehabilitation. While, on the one hand, he is present enough to undo knots, pull out tubes, and rail against the situation he’s in (albeit silently as he doesn’t really speak,) on the other hand he’s not cooperating with any of the doctors or therapists that come to see him. Trying to convince him to channel all that effort and energy into rehabilitation seems to him pointless. He wants, Heaven help us, all or nothing…and fruit…he wants to eat fruit.
This is the part where I get angry, and -mind you- I know it’s pretty unreasonable on my part: my dad’s intelligence, his ability to learn are intact, and he thinks it’s not worth the trouble. Where does that put him in regards to J’s ability to work and learn? What does that mean? I know this is probably very far from his train of thought right now, but…doesn’t my dad KNOW that there’s a repetitive, frustrating element to recovering from ANYTHING?
It’s very hard to watch TGG reacting to all this; we have always told him that one’s best effort is never really wasted. We learn from failure more than from success. We strive to do more. We don’t give up. We all have something to offer. Unless there’s no hope of achieving ANYTHING AT ALL, there’s hope for something… And now he sees his grandfather endeavoring to reach his demise more quickly. My dad isn’t suicidal, but he isn’t really looking forward to living as any less than he was before he had a stroke. And TGG, who works in the health care field, and who has been witness and participant in J’s entire life, is confused about what this all means…
Conciliating one perspective with the other is not easy. While we all understand that my dad doesn’t want to be “a burden,” we can’t really agree that a person in his state (and with his prospects for recovery) is in the kind of situation my dad is envisioning. Will he go back to playing three rounds of golf a week? No, but he never did play golf to start with… Will he go on power walks? Not really, but he’d given THAT up years ago. Will he be able to enjoy life? Well, isn’t that relative? There are people out there with full use of their bodies and intellectual capacities who are utterly unwilling to seize whatever enjoyment they can from the world.
And then, of course, there’s our view of the world as seen from people who live with J. In a household where even the smallest achievement might have been preceded by titanic efforts, we can’t quite wrap our heads around my dad’s attitude towards recovery. We know that we are being unfair, and that we have to respect my dad’s point of view, but we also worry that he is not entirely clear on what his prospects are, or he’s being stubborn about what he considers an acceptable level of recovery.
I don’t want to upset him, and I don’t want him to think that I don’t understand what his purpose is, but I wish I could explain to him that there is much he can still do. I wish I could convey to him that we’ve often encountered people who think that J is “less” because he doesn’t quite do things like others…and that it’s a waste of time to try to teach him.
So that’s where we’re at. We’re ok. We’re just…introspective these days. We find ourselves asking a lot of existential questions that we’d always toyed with, but that seemed so far ahead in the future that we’d barely scratched the surface…
Summer winds down slowly…the phone rings less…but the rings now feel more ominous. And that is the new normal…