Death
Clay's Death
I'm not sure I will ever fully get over the loss of Craig (my younger brother) and Clay. Craig was always very strong and healthy, and suddenly last summer he had leukemia. The kind he got was called Acute Lymphoblastic leukemia, which a bone marrow transplant often cures. The doctors tried the transplant in October (I was the donor) but in the end he just didn't survive it.
It is still something that I can't believe happened. I can't believe that he is still not here and that I can't go visit him.
Clay was born on his due date in August of last year, and no one, doctors, nurse-midwives or us had any reason to believe anything would be wrong with him. The labor went almost perfectly, with no sign of any distress, yet when Clay came out he could not breathe properly. I'll never forget the look on his face when he was born (I caught him), looking up a me while struggling to breathe. His look had a sense of pleading for me to save him, but also also a sense of accusation that I had made him leave the womb and caused this to happen.
Fortunately we were in a birthing room at a major hospital, and they whisked him to intensive care and put him on a ventilator. A few hours later, they moved him to Egleston Children's hopital where he was put on ECMO, a drastic procedure which essentially substitutes a machine for the baby's lungs.
Oddly, Clay's heart and lungs were themselves fine. But he had lots of lymph fluid in his lungs and chest which made it almost impossible for him to breathe normally. The doctors thought that there were holes in his lymph vessels, which were responsible for his problem, and they hoped that with time those vessels might grow together and heal up.
What followed was weeks of an emotional roller coaster in which Clay would show great improvement one day and be much worse the next.
He came off ECMO after 8 days; at one point he even came off the ventilator for a day.
Anyway, he lived for two and a half months, and even though he was tied down with all kinds of tubes and wires, he was conscious, alert, and intelligent, and was able to respond to us and his nurses in an almost normal way, given the circumstances. We even got to hold him and rock him, tubes wires and all, on several occasions.
At the end, though, he became extremely sick. His kidneys, liver, and other organs began to shut down. The doctors had to give him drugs to paralyze him just to keep him alive. We decided, together with the doctors, that it was time to take him off life support and let him die. At this point, Clay was in a private room, and some close family friends, Clay's primary nurses, and his doctors joined us in saying goodbye to him. We all took turns holding him and crying (even the doctors showed genuine emotion), and then I held Clay while the ventilator was turned off. He died very peacefully and quickly.
The doctors were never able to identify what Clay's problem was. The autopsy showed that his heart, lungs and lymph system were themselves fine when he was born. What killed him in the end was a CMV (cytomeglovirus) infection, but he was tested for CMV three times when he was first admitted to Egleston and all three tests came back negative. Yet nothing else really can explain why he couldn't breathe at birth.
The odd thing about this experience is that as terrible as it seemed at the time, I really feel as if experiencing and interacting with Clay enriched my life, and this feeling seems to be getting stronger and stronger as time pushes me farther away from the event of his dying. Maybe in the end I will remember his living far more than his dying.
The background of this period of my life seems to be speckled with other deaths as well. One of my best friends from college was lost at sea last September along with three of his brothers. My grandmother died in early January, and last weekend, the two year old son of someone I have worked with for a long time died (like Clay, he was never healthy). I worry about the stress of all this on me and my family.
Kip's Funeral
Damn funerals. Damn ceremonies. Damn the preacher or whatever he was. He did not feel anything—he only wanted to get across his message about the wonderfulness of God to all the sad people at the funeral. He sounded like a commercial for some big company.
Damn. How can people see life in such an all-or-nothing way, see God as some sort of being, call him wise, and then pass off death by saying he has a plan or that he dearly loves the Ayers? How can he talk about "coming from dust" and "going to dust" and praise his God at the same time. I think his God is as big a fool as he is. Why did it seem like the preacher was trying to torture us with all his calls to "Jesus Christ" and the wisdom of his God? Why especially torture that family so?
And why must those four—Mr. and Mrs. Ayers and that sister and that brother, all trying so hard to be brave and not cry before the people—why must they listen to well-wishers immediately after in that building there? And why did those people take all those pictures of the casket and flowers immediately after? And why did, even before, those two men start folding up the chairs as soon as the ceremony ended? Damn; at least I understood those people who stood around looking shocked a while, after most had started talking or left to wish well to the family.
But can't people see that death is no time to talk about God. I want to damn God if he had anything to do with it—or any knowledge like what that preacher said.
No, I can't look at life their way or death their damn way. I could never be pagan enough to think of God as some kind of being—or even qualities.
No, just understand life—that life is not an all or nothing thing—that time is a mental non-entity—that being alive has nothing to do with length or time. It is insane to look at life in such an objective fashion—life is subjective; it has always been subjective; it is made up of moments—really feelings expressed into objects and occurances, thoughts and emotions--and these feelings and the moments they translate into, have no time. What was that saying? —"Eternity is the opposite of time."
From Journal, August 6, 1974