A new day dawns and with it new learning, new understanding.
Dying is a business to be learned. I was three hundred miles away from my parents in their final years. I talked to them on the phone every week, but that’s a far cry from seeing, knowing. My only model was my grandmother, who was diagnosed with cancer and given six months to live. She lived eighteen months. It was a business of getting better and getting worse. She’d fail badly and we’d all think she was on her last legs (long after she’d stopped being on her legs at all) and then she’d rally and we’d think, wow, she’s nowhere near death.
Having a really good day doesn’t mean you’re not still on the treacherous path to death. I had such a day this week—a really splendid day. A day when I felt a part of the great mass and tangle of human kindness. It wasn’t a day when I did well; it was a day when the hum and buzz of human life was on the swell and I was a part of it all, and it was good.
The next day was a day of torment and despair. And for two days we all have teamed up and tried to make changes—in me, in medications, in how the people around me treat me, in the enormous system of the hospital institution—and this morning I awake and I understand something.
I had a friend, call him Mike, whose wife got multiple sclerosis. He, out of love, and she, out of need, conspired to ruin his life. His desire was to provide her with everything possible to ensure her happiness. Her needs grew and grew until, in the end, he was engaging in 24-hour skilled nursing activities. He was doing for her and to her things that no husband should ever be doing. Simply this: as her body broke down they replaced it with his. Ultimately, when she no longer could empty her bowels, he would put on gloves and reach into her body to empty her.
I wake this morning and understand this. If you-all would just do one bit more then I would be able to live as I am accustomed. If you would just spend a little more time with me, work a little harder, do a little better, then I would be okay. If you would just find me the specialist, respond a little faster, pay a little more attention, then things would be alright.
There comes a time when I have to understand that it’s over, and no amount of anybody doing any more or any better is going to change that. The only question is how much of other people’s lives I am going to suck up before I go down the drain.
Across the street from my friend Mike lived another friend—a church friend—who was a nursing aide supervisor and who also had a degenerative disease, and what she said to her husband was, “Put me in a nursing home. I don’t want to suck the life out of you.” That’s love.
Here’s the dilemma: the signs of life—the call to live—competes with the inevitability of dying. And so do the people. The nurses, usually, help people through acute medical crises and then discharge them back to life—to their wives, their jobs, the yard that needs to be mowed—so they always—always?—are looking for and finding signs of health and recovery.
The doctor who read my chart—but didn’t meet me—doesn’t see any impending death. The nurse practitioner—an experienced older guy who sits by my bed and looks in my eyes—says a matter of months. Another doctor, who has seen the laughter in my eyes, is wholly committed to restoring me to a functional level. The granddaughter who hates hospitals doesn’t want to come and see me, nor should she be expected to. Yes, grandchildren should go to the hospital and see Auntie, who is failing badly, but they should only go a few times, not twice a week. Children only should glimpse the demise and destruction of the human body on a very limited basis. They have a whole life ahead that they have to live; their ability and willingness to do it shouldn’t be stunted by the traumatic reality of how it ends.
In the three weeks here at Crouse Hospital—the cafeteria credit card notwithstanding—I’ve lost ten pounds. I don’t have the appetite I used to have. (“Women hope their lean years are ahead of them; men hope their lean years are behind them.”) The skin on my underarms hangs wrinkly and ugly. My arms and belly are covered with bruises from blood draws and injections. If I stop the heparin then maybe the bruises will heal. Or maybe I’ll throw a blood clot. Meanwhile, my body bears the signs of destruction. A little rectal bleeding, a little bleeding at the catheter site, a back that aches too badly to stand up for more than five minutes. Take out my dentures and my mouth sucks up in the ugly way of old people. And I no longer can get my dentures; I depend on someone else to get them—I am using others to live my life.
What should I do? What does God want me to do? It’s not about what the doctors think or what my friends want. It’s between me and God—always has been, always will be. It’s about discerning God’s will—always has been, always will be. My younger sister, an ordained minister, tried to get my life-support turned off when I was in the ICU in 1999. I have lived my real life—without drugs and with God—in the decade since then. My sister didn’t come anywhere near discerning God’s will.
What is God’s will now? My business is the separation of soul from body and I don’t think it will go easy for me. So many times in my life I have survived death. I don’t really know how to give in to it.