Paul's Internet Landfill/ demons/ Knowing Death

Knowing Death

It's probably not that hard to write about death; all you have to do is sit at a keyboard with death on your mind and type words. Making those words meaningful is a different matter. We're all at different stages of life, and I suspect the way we view the concept of death changes dramatically as we grow and change. As we move from one viewpoint to another, we forget the relevance of our previous views. When others who have moved beyond our understanding try to explain their views, we don't understand what they are talking about. It's easy to write the words, but it's hard to communicate the ideas.

A few weeks ago, I think I went through one of those transitions of understanding. I was walking home after volunteering in downtown Kitchener, and as I was walking past the Manulife office complexes I suddenly had a thought: I'm going to die. I am not going to live forever. There will come a time when I do not exist on this earth in the same way as I do now, as a living, breathing human being bearing my name and my identity and my life. I am going to end, and no matter what I do, that day will not be all that far off -- 70 years at most?

It seems silly to write those thoughts down. Of course I'm going to die. Barring miraculous terrifying technological advances, we are all going to die. This is not news.

There's a difference, though, between saying the words ``I'm going to die'' and actually understanding the significance of those words. For many of us, death is an abstraction that does not really apply to us. As the cliche goes, young people think they are immortal -- perhaps not in the sense that nothing can kill them, but in the sense that death is something that does not apply to their lives. There's a huge difference between understanding the abstraction of death and applying that abstraction to your own life. For me, the thought that no matter what I do I will cease to exist was sobering and scary. It reminded me of all the years of my life that I have wasted, and that I continue to waste. Death is a deadline: I have some small number of years and days and hours and minutes to do whatever I do in the world, and then the buzzer rings, and it's all over.

On the other hand, understanding my short time on this earth made the idea of living kind of absurd. What am I doing here? What can I possibly accomplish in my life? Why should I bother accomplishing anything -- grad school, volunteering, learning, reading? Maybe the only action worth carrying out is to become a parent and raise children, in the hope that some part of me will live on through my kids? Maybe I should concentrate on writing that book or thinking that thought that will get me in the history books, so that some small literary shadow of myself will live on? What am I supposed to be doing with the time that I have?

It's funny that these questions would come up, because up until a few years ago I spent a lot of my time thinking about these same issues in a completely different light. Death factored into these thoughts as well -- but it was a different kind of death. I did not see death as a deadline, but as an escape from life. Throughout my teenage years and into my early twenties I was fairly depressive and rather suicidal. High school was the worst time for me -- not because of high school, but because I felt hopeless and trapped and helpless. I spent a lot of time thinking about my death and the ways I had squandered my life, and on four or five occasions I halfheartedly attempted to kill myself. For those keeping track, I did not succeed once. I chickened out every time. Maybe the closest I came were when I walked out into the winter day wearing no coat in an attempt to find a ditch and curl up and freeze to death, or when I walked out to the railway tracks and lay myself down upon them, hoping the trains would come. Even these days I sometimes regret not carrying my plans out, because many of my personal predictions have come true: I have wasted my life, and I have hurt people, and I have not done a lot to benefit others, and I am probably a waste of energy and resources on this Earth. But at other times I am grateful for my cowardice, because (as my English teacher Mr. Ellis told me) things can get better, and there have been times when I have helped other people, and I have found some opportunities to make the world better, and -- most importantly -- I have some choices and control in my life, and I don't feel helpless and hopeless all the time. I did not believe anything in my life could change for the better when Mr. Ellis told me that things wouldn't be hopeless forever, and I suspect that those of you who are considering killing yourselves will believe me when I tell you that now. But it's true -- despite our best efforts things get better, so long as we hang in there. We run away from home, or meet somebody who helps us through our difficulties, or start a new life in some completely unexpected way, and things get better.

That's what death is about when you're a depressed teen: it's escape. Several years ago, I remember reading the truest description of suicide I have ever heard: people who are suicidal don't want to die. We just don't want to live, because life is hopeless and we feel helpless and we don't see any ways to solve the problems we face. My problems were both personal and global: my home life was miserable and scary, and environmental degradation and our general stupidity as a species overwhelmed me. I felt that I could do nothing, so I wanted to escape into unconsciousness. I spent most of my waking hours asleep, trying not to dream or think of anything at all. Unconsciousness provided a respite from life, and all I wanted to do was be unconscious forever. Thus, I wanted to end my life. I did not really want to die -- in particular, I was afraid that by killing myself I would shatter my already-fragile family, and that I would set off a toppling domino-line of suicides. I did not see life as an opportunity; to the contrary, I saw myself as half-dead already, incapable of helping anyone or accomplishing anything. The idea of facing a deadline did not even occur to me, and if it had it would not have mattered much, because I did not want to face the pain of daily living anymore.

For better or for worse, I find living life less painful now, and now I am viewing those questions in a different light. I still don't know why I am here or what I am meant to do. I still suspect that I will never accomplish anything in my life, but I am not sure of that anymore. I do know that I am less likely to commit suicide than I was before, unless my good friend Depression pays me a nice long visit. If I die, it will likely be because I get sick, or because I get old and my body breaks down further and further until it can no longer function. I will die whether I want to live or not. I want to make a difference in my world, so I find the idea of a time limit frightening. What's worst is that I have this bad habit of procrastinating as long as I can, then scrambling to finish whatever I have to finish just before the deadline hits. The problems in this case are that I don't know the deadline for this assignment, and I will probably be in no condition to scramble right before the deadline, and you can't achieve a lifetime's worth of accomplishment the night before it's due anyways. These days, I am thinking of death as a barrier, as an enemy to fight.

That view of death is very different from my teenaged one, and even further removed from my opinion of death as an older child and younger teen. When I was a young teen death had not touched me at all, so I could joke about it. I could read and write stories full of death. My friends would write morbid stories about stalkers. We would choose login names like deathphoenix'' anddragonslayer''. In computer science class we would write animations featuring a happy face that gets shot in the forehead, and we would wonder why our computer science teacher found the work of art disgusting. We would watch Storm Troopers being shot left right and centre, and we would cheer the killing spree. Violence and death were real, but they weren't meaningful. Death was the Terry Pratchett character who cracked jokes in capital letters as he carted souls away. Perhaps the closest I got to understanding death was when I saw dead birds on the grass or squashed earthworms on the sidewalk. At those times, I guess I understood death as loss and suffering, and I grieved for those animals. I did not extend those thoughts to the animals that suffered and died to put food on my plate, but when I encountered death in front of me I could see glimpses of tragedy. However, I could then go home and cheer Han Solo on the television without associating Storm Troopers (or for that matter Jabba the Hut) with squashed earthworms.

These days, my tolerances have hardened like my arteries, and I can't swallow violent and senseless depictions of death in the same way I used to. I can still read Terry Pratchett and appreciate the bittersweet humour of Death, but I am less comfortable with how easily people Pratchett's books die. I pretty much have no stomach for the killing sprees in Star Wars or other action movies any more. I don't find cheap death entertaining any more. Deaths snuff out life. That is tragedy, not entertainment, and I think it is shortsighted to treat the end of life so carelessly, as if it is no big deal. And no, I don't care whether it's the heroes or the villains or the hired thugs dying. It's all the same. I guess that's just my inner fogey talking, though, because lots of people find these spectacles entertaining and exciting.

Maybe other people can consciously relate the death they see on screen and the death we see in life and not feel any contradiction. I can't. I find death solemn, and I find the idea of dying just plain scary. I fear dying of cancer. I fear the degeneration of my body and my mind. Alzheimer's disease scares me to no end -- I hate the thought of losing my mind and thoughts, and of depending on other people to put up with my body as I degenerate further and further. I even fear the inevitable -- my teeth getting weaker and falling out, my back giving out, my feet starting to develop problems. For a long time I used to mock people who freaked out over wrinkles or grey hairs. Now I understand the fear a bit better -- wrinkles and grey hair matter because they are a signal that our bodies are breaking down, that we are getting older and moving closer towards sickness and death. In some ways, sickness is worse than death, because as you sicken it's harder and harder to deal with the life you have left. You have to deal with the pain of your body breaking down, with your diminishing abilities, with your dependence on others to survive. That's terrifying. Even worse, as a society we abandon our elders, shutting them up in nursing homes or leaving them on their own, to face their children's absence and their friends dying off one by one in addition to their failing bodies -- and furthermore, to deal with these things alone. What kind of punishment is that? No wonder suicide rates are so high among seniors -- it's teenaged hopelessness all over again, but this time nobody's trying to convince you that you have your whole lives ahead of you.

I don't want to deal with that in my own life, but I probably will not have to worry about that kind of illness for a few decades. These days, I am far more worried about the people around me. Losing those close to you is even worse than dying yourself, I think, because when your friends and loved ones die you have to carry on without them, but when you die yourself you aren't in any position to do much of anything -- at least not in this world.

Knock on wood, I have not had to deal with the death of the people closest to me yet. In that selfish sense, I have been immensely fortunate. I worry, however. One of the interesting aspects of spending time outside of school is that I have met and befriended people who are considerably older than me. Through my volunteer work, I have developed friendships with people in their 40s and 50s and 60s, and furthermore I see them as peers, not authority figures. I care for these people, but with friendship comes worry, and I worry about some of them immensely. Some of my older friends are heavy smokers. Sometimes I listen to them cough and think of their health and the death sentence they are imposing upon themselves. They tell me about their aches and pains -- about their foot problems, about their backs, about their knees, about how they can't function on smoggy days. And I get worried. I don't want to lose my friends. I don't want them to get sick, or to die. I don't want to deal with the thought that they won't be here, volunteering at my side, sharing their stories and wisdom, offering encouragement and friendly words. I don't want to think of them suffering with illnesses, of visiting them in some hospital and watching them die, of going to their funerals and saying goodbye to them. I guess a lot of these feelings are selfish -- it's all about me and my inability to cope -- but I would like to think that I care about my friends, and that I want them to live long happy lives. Time is marching on, though, and the smoke is in the air, and sooner or later I am going to lose somebody close to me. In the meantime I want to be a nag. I want to tell them to take care of themselves and -- for crying out loud! -- to beat their nicotine addictions so that they will stay healthy. Unfortunately, we all know that nagging doesn't do a thing in the world unless the people in question are ready to change, and many of my friends aren't. So I wait, and I worry, and I try to appreciate the time I have with my friends.

And then there are my parents. I do not have the best relationship with my parents right now, but I still care about them and worry about them. They are getting older, and their health is deteriorating. My father suffers from high blood pressure. My mother's body is breaking down -- she's diabetic, and she has foot problems, and recently she told me that something might be going on with her bowels. It's so scary. I don't want my parents to get sick, and I don't want them to die. Even more selfishly, I know that if they did get sick it would be my responsibility to care for them, and I have a lot of trouble dealing with that thought. It is not a responsibility I look forward to keeping -- but what's the alternative? Putting them in a nursing home? Leaving them to die alone?

It's no revelation that death is not easy to deal with. I have been fortunate in that none of my immediate friends or associates has died yet, but death has brushed up against my life indirectly. Perhaps I first recognised the significance of this thing called death when the celebrities I looked up to as a child started dying. First Jim Henson died of pneumonia, and then Isaac Asimov passed away. Then more recently Sheri Lewis died, and Ernie Coombs (aka Mr. Dressup). Most of the science fiction authors I grew up loving are either dead or quite old; a few years ago Harlan Ellison suffered a heart attack. Pierre Eliot Trudeau died a little while ago, and all of Canada marked his passing. These were glimpses of death -- they were important to me and changed my life, but not in the same way losing somebody close would have. I could still abstract away these deaths, because I had never met these people personally.

Some people I had lost direct contact with have died: my high school aquaintance James Nozoe died young in a boating accident, and Li Guo, a secretary I used to see a few times a week when I was at Erindale college, passed away a year or two ago. A gentle man named Mark Johnson used to volunteer with me at Recycle Cycles. He was somewhat of a pessimist, but I grew to like him, and he was dedicated to the cause. Then he disappeared from Recycle Cycles for a few months, and then I learned that he was in hospital being treated for depression, and then the hopelessness got to Mark and he killed himself. I think about Mark quite a bit, and even today I wish there were ways I could have helped him.

I guess the deaths that have touched closest were when people close to me have lost loved ones: my best friend lost her mother to cancer a few years ago, and my maternal grandfather died. I did not know my maternal grandfather that well, but I knew him a little, and his death struck me. It struck my mother far more deeply, of course. I remember how she called me to tell me the news, and that she would be rushing off to India to attend to the funeral. My grandfather was a diabetic (as is my maternal grandmother), so the first thing I thought of was my mother and her health. Later I started understanding how losing her father must have affected her, especially since she had left her parents for twenty five years to move to Canada and provide more opportunity for her children.

On a personal level, the death of my best friend's mother probably affected me more, because I was much closer to the situation. I had never really met my friend's mother, although I had talked with her on the phone. I did, however, keep in close contact with my friend, who told me what was going on. My friend's mother went through a year of cancer, getting weaker and weaker and then dying. It was especially hard on my friend because she had lost her father ten years before.

As I listened to the struggles my friend's family went through to resist the cancer, I went from (somewhat) sympathetic ear to an indirect participant -- chemotherapy and radical surgery, and then some improvement, and then degeneration and degeneration and expensive drugs and then a final sad e-mail from my friend, and then the funeral and meeting Baka face to face for the first time as she lay in her casket. It wasn't the best introduction in the world. I felt sadness and guilt at that funeral, and all the apologies to Baka's corpse -- I am sorry this happened, I am sorry I did not pray for you harder, I am sorry I did not believe in God enough to pray properly -- were not going to make things better. She was gone, and she was not coming back. Then, on top of everything else, her family had to pick up the pieces -- again -- and move on: dealing with the estate, arranging the funeral in the first place, figuring out what to do with the mortgage. I did not need to be very close to the family to understand the ordeal they had gone through.

Here's the kicker: Even my friends who have had to deal with close deaths are so much luckier than so many people in the world. Last week I attended a talk by an activist and community developer from Kenya. He estimates that in his region of 100 000 people 10-15 people die each week from malaria and AIDS, and that many of these people are adults who leave children behind. He himself has adopted seven children because their parents are dead. Think about that. Think about the tragedy that others in the world face every day. It's crazy and overwhelming. It makes me feel so fortunate and so angry and so solemn all at once. Does this need to happen? Is this just the way the world works? Is it unreasonable to expect that everybody have as little contact with death as I do?

Maybe it is unreasonable. While there is no question in my mind that the epidemics of AIDS and malaria in Africa are preventable, and that there is no need for such staggering numbers of people to die so early in life, I am fairly sure that my unfamiliarity with death is unnatural, and there is good reason to believe it is unsustainable. That is not an easy thing to admit -- that the privileges I enjoy are unsustainable, that the wonderous technological advances we have developed are in the end bad for us -- but more and more I suspect it is true.

Consider, for example, health care. A few days ago I attended a passionate and informative talk by Nuala P. Kenny, a pediatrician and professor and nun. She had chaired a forum on health care a few years ago, and she drew on those experiences to raise many interesting and disturbing thoughts. She talked about health care as a reflection of our collective Canadian values, how we intend health care to reflect equity, compassion, civility, solidarity and efficiency. She talked about how health care does not make a good market good, because when it comes to the health of our children, we do not behave as rational market actors -- we are willing to spend whatever it takes to keep our children alive and well. She talked about health care as an economic good, how we in Canada spend the second-highest per capita amount on health care in the world, and how our health care still cannot keep up with our wants. She talked about health care as an economic good: we have scarce resources to allocate, and so far we don't know the right way to allocate those resources, because no matter what we decide people are going to suffer and die.

And then she brought up a few points that I am still wrestling with. She described the ethical dilemma of a man who -- at great financial expense to the system -- has a heart transplant, but whose transplanted heart fails. Does he get a second heart? Getting a second heart will mean that somebody else won't get a first heart transplant. Somebody will end up dying. How do you make that decision? Does the richer person have the right to the heart? That is what our market system would say. The answers are not clear at all. Kenny says that we are not even discussing the questions now.

The problem, of course, is that we don't want people to suffer and die. We want to do whatever we can to keep our loved ones alive -- if not for the sake of our loved ones, then for our sake. Most of all, we don't want our loved ones to die because we did not have enough money to help them get better.

Unfortunately, the consequences of these beliefs are staggering. If people don't have access to health care, people go bankrupt to pay hospital bills. If people do have access to health care, the health care system breaks under the stress of too many people spending too much money looking for miracles. Kenny said that 80% of the health care expenses we spend per person occur during the last two months of our life, as we get sicker and sicker. We throw money at medicine in the hope that we can stave off death just a little longer, that somehow tomorrow we will be miraculously cured and everything will be okay again. The only problem is that our health care system can't deal with that allocation of resources: we spend a lot of money for little payoff, because we end up dying anyways. Meanwhile, people suffer from malnutrition and inadequate housing, which contributes to their ill-health down the road.

I completely believe that we spend most of our health care dollars at the very end of our lives. I have seen evidence of it -- we all knew that my best friend's mother had little chance of survival. Her cancer was diagnosed when it was in stage 5, and the doctors said there was a 95% probability that she would be dead in five years. So my friend's mother and her family chased that 5% -- going through surgery and chemotherapy, paying for medication that cost hundreds of dollars a dose. The expense was crazy, but nobody wanted to give up, and certainly nobody wanted to tell my friend's mother that it was time for her to die. In the end, she died anyways. Unfortunately, the hospital and medicine bills remained. My friend's family paid some of those bills, and the health care system paid the rest.

[Update: my friend contacted me after reading this article, and she offered a few corrections: First of all, the family was not aware that the cancer was hopeless until a month or two before Baka died. Secondly, the expensive drugs I mention were palliative: they were intended to make Baka's death more comfortable. In those senses, I was misrepresenting that family's struggle; it was not the case that "we all knew that my best friend's mother had little chance of survival" until a few months before she died.]

[Another really important thing I want to say is that I do not blame my friend's family at all for making the choices they did. As I state below, maybe we should look at death differently (and maybe we shouldn't). But even if it was best for us to change our views, I do not for a minute pretend that these aren't hard decisions, and I don't blame people for doing whatever they can to keep their loved ones alive and healthy. All I am trying to say is that there are hard consequences to deal with.]

I think we spend so much money battling the probabilities because we don't want our loved ones to die. There's another view of death, however, that I have observed but still don't believe. It is the view that death is not an enemy but an inevitability, as integral to the life cycle as birth and childhood. In this view, death is something to be accepted when it comes, and until death comes our job is to live as well as we can. When death does beckon, we do not fight it. We make our preparations and go peacefully into that good night. Then our loved ones miss us, but cherish the time they had with us.

Some good friends of mine lived with a gentle dog named Zephyr. She was an old, gentle dog. She spent much of her time lying down, looking at us with her big brown eyes, sometimes putting up her paw if it looked as if we would brush her fur. She spent so much time lazing around that I frequently cracked bad jokes about the number of quick brown foxes jumping over her. I liked Zephyr a lot; because she was so lethargic she did not scare me as much as other dogs do, and it is largely thanks to her that I do not fear dogs as much as I used to. She had been through some rough things -- she had hip surgery after being hit by a car, and as a result she had trouble getting up and down stairs. When I met her she was already an old dog, but for most of the two years I knew her she seemed relatively healthy and relatively happy. Then she got sick. Her hemoglobin counts suddenly went down. Her veterinarian couldn't tell what was wrong, but her humans had the option of paying for some diagnostic tests that might reveal the problem. They decided not to have the tests done. For a long time I was a little annoyed by that. Didn't they love Zephyr? Didn't they want to figure out what was going on? Maybe it was a simple problem that could have been fixed easily? I guess it was easy for me to ask these questions, because I was not willing to pay to have the tests done on Zephyr's behalf.

So the veterinarian never carried out the tests, and Zephyr stayed at home and slowly died. According to her owners, she had her good days and she had her bad ones, and every day I intended to go down to see the gentle dog and say goodbye, and I never did. I am going to regret that for a long long time, I think. I kept letting the rest of my life get in the way of visiting my canine aquaintance. I kept hoping she would be okay for a few more days, but after a few weeks Zephyr's days ran out, and she died at home, her humans by her side.

Zephyr's owners did love her very much. They took her death quite hard, I think, and they still miss her a lot. At the same time, they had not wanted the vet to carry out any heroics to keep her alive. Those were their words: "no heroics." In their eyes, Zephyr had led a long and relatively happy life, and it was her time to go. They could have paid for the tests, and for the surgery and chemotherapy and whatever other medical wonders might have kept Zephyr going for another year or two. They decided not to, and probably they made a wise decision.

Of course, people are far more willing to let their pets die than their parents or children. Euthanasia is not even an issue in the pet world. Owners tearfully put their pets "to sleep" all the time. For some reason I can sympathise with but not quite understand, humans are different. Maybe the answer is to avoid fighting death so hard. I think that people nearing the ends of their lives find it easier to accept their deaths than the young people who love them. I don't think that every dying person reaches that acceptance, but maybe if we as a culture were more willing to accept death peacefully we would be better off.

Maybe. Maybe not. Euthanasia for humans is contentious because it raises all these ethical questions of power and age discrimination and informed consent. When do we decide that it is time for somebody else to die? Is the dying person the only one who should be authorized to stop the heroics? How about relatives who force this "consent" from loved ones unwillingly? Should old people be denied treatment because they are "about to die anyways"? These questions are hard for us as a society to deal with, especially when we factor in the financial costs of providing health care, and start putting dollar values on people's lives.

Of course, one solution people have come up is the Living Will, where people state that they want no heroics before they get sick. That is good when it works, but it certainly does not cover everything.

For example, we don't actually know when the final two months of somebody's life will be. Sometimes it is fairly apparent that somebody is going to die soon, but often it is not. One of my good friends has had health problems all his life. A few years ago he had a liver transplant, which no doubt cost the health care system lots of money and resources. As it turns out, his transplant went really really well, and he is now relatively healthy and able to function in society. I give thanks that he is here and healthy, and I cherish the opportunities I have to communicate with him. It was not his time to die, and for that I am grateful. However, nobody knew for certain that his transplant would be successful. What if it had failed? Would it have been better to avoid the expense of surgery and use the money to feed hungry kids? The point is that you can't make that decision before the surgery happens, and in this case the surgery went well, so the money (in my biased opinion) was well spent. How do you make those decisions? How do you decide that this young man does not deserve the opportunity to live out a long productive life? Is that just age discrimination again? Where does it end?

Obviously, I don't have the answers to these questions. I am not comfortable thinking of death as a natural life event to be welcomed, because I am young and selfish and I don't want my loved ones to die. Even as I say that, however, I understand that death does happen, and while it is important to take precautions against early unnecessary death (which is why I think that preventative health care should be funded by our health care system, and why it is our responsibility to care for our own health as individuals rather than placing all the burden on our collective health care system), death is inevitable. We are all going to die. Dealing with that in a healthy way is a step that I probably have to take, but it's hard.

The thought of my own impending death still scares me from time to time. The cliched solution to that fear would be to vow that I am going to live "each day to the fullest" and make sure that I spend every moment as if it was precious. That is easier said than done, of course. Even over the past two days of writing this entry, I have squandered hours and hours of time doing nothing at all. My guess is that -- as with everything else in my life -- I will probably procrastinate and fail to do anything with my life. Then it will be too late and I will find my health gone and my body failing, and then I will die, wishing on my deathbed that I had spent more time at the office.