So what’s this dying business all about? What is one supposed to DO? It’s all very confusing, hard to sort out. Over the weekend I went ballistic again and tried to start FIXING things, having totally lost sight of the fact that there is nothing that can be fixed.
My vision is completely messed up. You cannot begin to guess how very, very much I would like to settle down with a book, curl up under the covers and have a good read. Cherish those moments; enjoy your reading, time spent exploring another world while ensconced safely in this one.
Eyes get very definitely worse in the hospital, but that doesn’t mean there’s a damn thing you can do about it, nevertheless the ophthalmologist came—and told us horrific things she could do if-this or if-that—things like injections into the eyeball, all of which reminded me how very much I want comfort care, and how this wouldn’t be it.
What I need are new glasses and you can’t get them in the hospital. You know those great big machines your eye doctor has in her office? They’re not portable. The standard response in the hospital is “See your eye doctor after you’re discharged.” I’ve been here two months and I’m not going home; the eye doctor doesn’t know that. No discharge, no glasses, no can see. Read anyway, awkwardly and with great discomfort.
Two months in the hospital and my freakin’ TOENAILS need to be cut. Good luck with that. I’ve been asking for weeks. I dunno, but I do think that even on the way to the casket one should be allowed to get one’s toenails cut. I mean, the specter of six-inch toenails sticking up in the casket . . . well, too gauche, my dear.
And then we come to myalgic encephalomyelitis (ME), a/k/a chronic fatigue syndrome (CFS), a/k/a chronic fatigue immune deficiency syndrome (CFIDS), and that’s where I lost it. All too complicated to explain. There is so little difference between CFIDS and death. And here’s the thing: CFIDS is cause unknown, cure unknown. There’s nothing to be done except let it all slide.
But how do you let it slide? Up the oxycodone and sleep a lot. But it’s not that easy. Upping the oxy means loss of appetite, which leads to waking in the night with stomach pains. Likewise, it means constipation, never knowing when you can poop. And, of course, there’s the low blood pressure and going to the bathroom is accompanied by the imminent probability of passing out, and meanwhile you’re trying to explain the inexplicable to some nursing assistant you’ve never seen before.
There is no going gently into that good night. The separation of soul from body does not happen easily or comfortably or quickly. It hurts. You would so love to just roll over, sigh, and surrender—but it’s not as easy as that. Do you have any idea, you people who put your pants on and go to work every day, do you have any idea how many people—mostly women living alone—on a fairly regular basis pray for death? The trials and tribulations of living far exceed the small comforts and little pleasures. There are so many of us who wish it was over, and wonder how it will end. We talk about it with each other; we don’t tell you.
I’ll tell you what’s good: spending an hour or so kibitzing with an old friend, then another hour telling stories to a young new friend. That’s nice; that’s fun; that’s a pleasurable way to pass the time. It would be a lovely end to life if one could just sit around—okay, lay around—and chitchat with friendly folks about nothing in particular.
But they always have to leave to do a job.
And then you are left alone with trying to pass the time while your body is moaning and complaining. And you wonder about the clay vessel and the spirit it contains. And you so wish it would be over because there is nothing, absolutely nothing, you can do to make it better or even to keep it from getting worse.
And so it continues.