[first published in "The Flatland Oracles", my previous blog]
Lately, I've been chatting a lot to a friend who is a thanatologist. She does counseling for the dying and for their families, both before and after death, and works with a lot of Hospice patients. We had a really interesting conversation about death and dying and she recommended a couple of books for me. Our conversation really got me thinking.
I've become very interested in the subject of death. How is it we're so unprepared to deal with it? Seriously, isn't that a bit weird? It's the one thing---besides the fact of being born at all---that we all have in common and that we can all absolutely expect. Actually, it is not a 'bit' weird; it is extremely strange. We are an entire culture in denial about this basic fact of existence. Why?
It's not just us, but I think western cultures are less in tune with their mortality than some others. You would think the question of how to die and how to deal with death would be questions as absorbing to people as, say, religion, sex, politics, or anything else.
We tend to assume as a culture that other people---including those from other cultures----share our revulsion and fear, our belief that death is the worst thing. That is not the case, of course, and our blind spot in this respect gets in our way. We can't really understand the thought processes of a suicide bomber or a kamikaze pilot; we can't understand (at least not anymore) people who are casual about death, who kill casually, or even die casually. We are terribly reluctant---as a culture---to think about death or dying at all.
But shouldn't a sophisticated culture have better ways of coping with mortality? Shouldn't it also provide resources for the dying, and more education about death and coping with the dying> Why aren't we better educated about dying (our own) and about coping with dying (family members)?
There isn't much out there except for Hospice (good, but not enough) and religious organizations. I don't think churches are the answer. Religion and beliefs about the fate of the soul after death are part of the overall picture, but only a part of it. In any case, questions about the afterlife are only the most abstract aspect. How does it feel to know that you are dying? How do you cope with knowing that a spouse or parent is preparing to die? How can it be done with a maximum of grace and a minimum of psychic pain?
When I was doing volunteer work, I had the opportunity to talk to people who were in the process of dying. The ones I talked to most were the ones who didn't have other resources to fall back on; they were people who were dying alone, having been abandoned by friends or family. I got to know of them quite well; they were terribly isolated. The problem in both cases---the reason that they ended up so alone--- was that they both took so long to die. One, a woman, lasted 10 years after diagnosis of a terminal disease; the other, a man, died slowly of AIDS.
The one I got to know best was the woman, Carol, who over the long period of her dying had driven off everyone with her demands for attention and sympathy. I wasn't surprised. From what I've seen, most people have a very limited amount of patience with the dying. They don't want to watch someone die and they don't know what to say to someone who is in the process of doing it.
Carol and the other dying people I talked to felt marginalized; in some respects, they were as isolated as the homeless. They wanted---they needed---- to talk about the business of dying. Unfortunately, Carol wanted to talk to friends and her family only about dying. She talked about it as if it were a misfortune unique to her. She had apparently forgotten that all the rest of us are on that same road, though (unlike her) we don't have a general idea of where we are on it at any given time.
Carol seemed to assume---which in a way is understandable---that no one else she knew had anything comparable in importance to talk about. She seemed to forget that the rest of us are dying also; we simply don't have the advantage of knowing the approximate time left to us.
Unfortunately, the perception that one's own misfortune takes precedence over any other is not an attractive one. Nor do most people have at command a limitless amount of pity/compassion/empathy. Someone dying very slowly needs to spread out very thinly indeed demands for attention and sympathy. Even the dying are likely to be told brusquely "Get over it," if they expect to be the center of attention and concern over an extended period of time---and particularly if they take much, much longer at it than the people who would otherwise mourn their passing can cope with.
While the dying are preoccupied with dying, life keeps happening to their family and friends. Their family and friends kept having their own problems the whole time. They needed support and attention too and sometimes felt too fragile themselves to meet her demands. It's a terrible situation. It tends to bring out the worst in people.
I felt bad for Carol, but I also felt sympathy for her family and friends. Those of us who are not dying NOW or are at least not aware that we are are all certainly going to. The lives of the dying are not easy, but the task of dying isn't one that other people can really do for you, and it isn't as if they aren't going to have to die as well.
Furthermore, the dying are, while dying, still alive. To the extent possible, they need to be reminded of this and encouraged to stay connected to the world for as long as they can. They may not have time to write that novel they never got around to writing, but often there is still time to create something. Keeping a journal, making a videotape, painting, blogging, anything---all are better than waiting passively for the end. We need to focus on teaching people how to make the best of a drawn-out death. Furthermore, the dying need help talking to the not-yet-dying, and vice-versa. The dying need some structure and some intelligent support. It's not something people just know how to do.
But they also need to be aware of the needs of the living for attention and support. Particularly if your dying is taking a long time, you need (if you wish to have people around you) to be prepared to give attention and support to other people's struggles with their (comparatively) trivial tasks.
Carol spent her last two or three years becoming increasingly bitter and angry. Three years! In three years, there is time for someone generally ambulatory, as she was, to make something of what remains of her life.
But she was angry all the time. She wanted someone to be there with her every minute, waiting for the moment to arrive. She seemed to find it outrageous that her family and friends wanted to go on with their lives or that they would expect her to take an interest in their (lesser) problems. She felt neglected.
And we do tend to ignore and neglect the dying. We don't know how to talk to them about it. Perhaps we feel that death is sacred, therefore they should be set aside and sequestered. It's as if we feel that a person in the process of dying, however slowly, begins while living to lose their humanity and to begin to partake of eternity. And eternity scares the shit out of most of us.
What is needed---among other things---is an etiquette of death and dying. We need a culture for the dying and for the people around them; and we need an etiquette of death and dying.
I don't know the solution for this, but it's something I am exploring. My friend recommended a couple of books to me that I hope will extend my own understanding.
Copyright Damozel 2005.