Heaven's Coast - Mark Doty [106]
He’s himself, of course, unmistakable, and yet changed.
But sharp enough, still, to be frustrated.
I want, he says, to go for a walk.
Okay, I’ll get the wheelchair ready.
No, I want to go for a walk.
I wish you could go for a walk.
I can, I’m going to.
It would be nice if you could go for a walk.
(A vague noise from him then, sigh of frustration, annoyance.)
Later. When you’re gone, he says, I’m getting up and going to town.
Me, remembering my days, years ago, as a preschool teacher: You wish you could go for a walk to town.
It works, this time; he nods, and lets out an easy little sigh, reconciled. Maybe, he says, later.
Of course I’m afraid that if he really believes this, or gets confused and tries to stand, he’ll fall and hurt himself. It happens just once, when I’ve gone shopping and there’s no home health aide there, and somehow the remote control’s been left on top of the television, and Wally very much wants to change the channel, so he sits up on the edge of the bed, which he can do without too much grief. And then when he collects himself from the work of sitting up he goes to stand, just enough to reach over and pick up the remote control, but of course he goes down, his legs useless, liquid, so that when I come home in maybe half an hour there he is, on the floor. Though I’m terrified for his poor body and afraid for his dignity and spirits my poor love is laughing, and once I get over the shock of it I say why are you laughing, even though the sweetness and clarity of that laugh make me laugh too, and he laughs some more and says, “What else can I do?”
Grace
That “what else can I do” seemed to signal a kind of internal adjustment, an acquiescence. Even, in an odd way, a sense of relief. If taking to bed, this new set of physical limits, meant confinement for Wally, it also in some way seemed to mean safety; he wouldn’t have to try now to negotiate a world he couldn’t manage. And of all the dire courses his disease might have followed—pneumonia, retinitis, KS, dementia—this one was what had occurred, a kind of mysterious failing, a fading from the ground up that no one seemed to know a thing about. Our caseworker had seen one other man with PML; he’d gone so gently, she said, a kind of softening of his awareness mediating his increasing physical weakness.
Rationally, of course, having one sort of illness did not preclude having others, but I believe that for Wally the course of things had somehow become clear, the waiting ended. It wasn’t that he could have articulated that. It was simply as if some weight he’d been carrying were lifted; freed of the terrible suspense of uncertainty, he seemed lighter, more serene, ready to laugh.
And a curious thing happened—not just at that moment, I mean, but over the course of that summer, gradually, and by season’s end entirely clear: the descent of some form of grace.
Was it PML itself that gave Wally that peace, erasing terror, disabling that sort of acute self-awareness that would make a misery out of watching oneself fail? Was it a kind, compensatory mechanism in the disease, that took his nervous system’s ability to control his legs away, but gave him childlike pleasure in return, allowed him to keep his delight in the world?
When we heard, late in the spring, that Bobby had died, in a Catholic chronic care hospital outside of Boston, I was afraid Wally would take it hard. Of course he was too sick, by then, for us to even consider going to the funeral, where I doubted we were welcome anyway; Wally, in his wheelchair, was the undeniable evidence of AIDS, everything the family wanted to deny. But Wally had already said good-bye to his friend, that day in the hospital lobby which already felt like decades ago. He met the news with equanimity, a little period of quiet, and then calm.
Over the months which compromised the rest of his life, there’d be moments of pain, of frustration at his growing limitations—but imagine, confined to bed for nine months, having only little frustrations! Darkness might flare at the edge of things, but