The End of Life and How to Die

I was going to write about working without wearing any pants, and how pantsless careers are sort of ideal, but instead I am going to offer some thoughts on death and dying.

Most of my mornings begin like this: the low-impact sport of serving up espresso drinks at my daughter’s school followed by a cool down period of errands on the way home. Sometimes, since this is Los Angeles and there is always a bit of traffic to contend with, I have time for a phone conversation or to catch up on my quota of NPR. The ride home also gives me time to ruminate on important issues and subjects for my blog. Sometimes a conversation sparks a new thought process, twists the direction I had planned on going or otherwise derails what would have been a perfectly good fluff piece. By way of example, I recently conversed with my mother about my father’s final days, thus running the train of intention for this post completely off the rails.

It had started innocently enough, as these things often do. Kind of like, “Hi, Mom — do you remember if Dad wore pants when he worked? No, I am aware that he wore them at the office, of course; he was a respected attorney for goodness sake.” And then it would have inevitably shifted direction to something along the lines of, “What about when he was getting really feeble toward the end there, with all the pain and the weakness? Did he ever just shine the pants then? I mean, what would be the point of pants?” My mother had to live with him through the last months of his life, watching his physical and emotional decline; both of them, I imagine, felt powerless.

My father was terrified. A man who had never shown any religious inclination as long as I had known him (in spite of his best efforts at taking us to several churches when I was a little kid) now found himself facing a spiritual crisis. I don’t think he ever believed in the power of prayer, but my mother found him on several occasions, on his knees and pleading with either God or the ceiling to end his suffering. This story resonates with me for a number of reasons. On the obvious, surface level, his desperation makes me deeply sad. The fact that he was so frightened about death and yet so physically uncomfortable that living was torturous seems profoundly unfair to me.

For a long time, I have been planning on writing about end-of-life issues. I want to be able to choose when I die. Rather, I want to be able to be able to choose when I die — I’m not certain that I will want to pick the date and hour, but I do believe that it is something of an essential right that we should have. I’m not talking about suicide because of depression or anger or some passionate or passing response. But in cases of terminal illness, the onset of dementia, the gradual shutting down of one’s mental or physical self, it seems justifiable that suffering could be abated and a life ended with dignity by giving that control to the individual without penalty. As it stands now in most states across this nation, ending one’s own life just a few weeks or months earlier than would naturally happen (and perhaps a few expensive months longer than one might be “kept alive” artificially), would forfeit payouts from life insurance or potentially affect other benefits for surviving family members. I wonder, often, what my father would have done had he been given the means, rather than crying to a God he most certainly never believed in.

At the very end, my father went quietly, in his sleep, under a heavy dose of morphine administered as he lay in a hospice facility. He had not spoken for several days, not since I told him on the phone that I would see him in a week, expecting he would hold on until my visit. My aunt had just arrived to spend some time with my mother; they said a few words to him as he slept, probably something about going out for lunch. By the time they were in the parking structure, he was “gone.” We quickly devised our own mythology about how my father had held out until my aunt arrived so that my mother could be with her sister rather than being alone when he died. It was a comforting story. I’ve told it often.

We tell stories to cope with grief. This is why so many people talk about loved ones being “at peace” or “in a better place,” or talk about seeing them again in some flavor of the Afterlife. We tell stories to make the dead seem heroic in their final moments, going bravely or selflessly. We tell stories about whatever makes us feel better, but that is to be expected, especially in our culture that has such a willful denial about death being a natural part of our existence.

Next to birth, death is the singularly most natural part of life. We have a beginning and we have an end. The middle part, our individual stories, that is where we write the meaning into our lives, all those things between the two absolutes. We are born. We die. Culturally, everyone is ready to celebrate the first part, the beginning — but our sick, our infirm, our dying, these people are hidden away, rarely talked about, ignored or marginalized, often placed in specialized homes, hospitals, hospices, care centers or another manifestation of the business of human decline. We treat death with fear, loathing, anger, bitterness, sadness; it is rare to find people who are simply okay with it, in spite of thousands of years of various cultures treating death as what it is: the end of a vessel, the body to be returned to nature since it no longer has any useful function. Some cultures continue to treat the deceased as a part of society, always there with the family, if perhaps only symbolically. But here in the West, we either cling and mourn and refuse to recover from the loss or we tuck away the feelings secretively and move along, perhaps struggling to understand “why” for months or years.

Western religions may shoulder part of the blame for our unhealthy repulsion from death. After all, they set up systems of potential punishment that we may not be allowed to fully understand. What if we doubt at the last? Will we be forbidden from Paradise because of a momentary but ill-timed lapse of faith? Will the rules be as capricious as they appear in the literature? Will years of self-righteousness be recognized at the end for the hypocrisy they represent? More than that, religions tell us what to believe, give us order and rules, but then offer ceremonies to separate the dead from the living, to put the body away.

Culturally, we are very good at putting the body away. Typically, the deceased are whisked off to be autopsied or embalmed and then only brought out to show briefly, in a box, before again being put away. Bodies are then cremated or buried underground or locked behind thick concrete walls. We weep, wail or sit silently. But we rarely use the word, “dead.”

The Language of Death Matters

We wrap ourselves in a shield of euphemisms when it comes time to actually speak about death. We use words like “loss” or “passing” or “departed,” but we are encouraged to avoid blunt terms like “death” or “dying.” Tip-toeing around the actual words that describe what we are talking about has the subtle effect of obfuscating the meaning, changing more than merely the tone of what is supposedly being talked about. Yet we know that we haven’t simply misplaced a loved one, the person has not romped off someplace mysterious, the individual is dead. And that should be okay.

So it is curious why most of us struggle to find the “right words” when we refuse to actually use the “correct” words. By avoiding the most honest terminology, calling things what they really are, we further distance ourselves from this natural component of life. We bury the concept of death under a thick blanket of sensitive phrasing, pretending it is not really there. We don’t have to acknowledge that a life has ended, at least not directly, and therefore we can feel a safe distance from the event, from the process, and more importantly, from its inevitability.

When I wrote my first note of condolence, I must have been in my teens. I remember staring at the paper, my pen dancing above it in stops and starts while my mind spun around what would be an appropriate thing to say. My first inclination was to avoid mentioning what the note was for altogether. I tried formulating that in my head. Better to say nothing specific rather than risk upsetting the recipient with the wrong word, after all. Only it wasn’t better that way, it was just confusing — like I did not even know what I was writing the note for or aware of what had happened. So I chose to be direct, and it set the route for me ever since. The response I received from my note shocked me just a little. I was told it was the only message that said just the right thing, and I think the reason for this was that I was honest, clear and simple. I don’t recall the wording, but it was something like this: “I’m sorry that X died. That must be hard on you. It sucks. And it will probably be hard to get over. That also sucks. If you want to talk about it, I’m here to listen.” It might have been marginally more eloquent than that, but the point was that I didn’t couch my message in comfortable terminology. Instead, I just tried to talk about it like I would any normal subject.

And death should be a normal subject.

If we could talk about death the same way we talk about lunch or the weather, it would be a lot easier to make decisions about end-of-life issues. Work out power of attorney over a few beers, for instance. Well, maybe not a few for that one, maybe over coffee, but openly and joyfully if possible. We should all know what our loved ones want, how they want to conduct themselves at the end, without any mystery. These should be topics we have no problem discussing, yet they are things that often are never addressed until it is too late.

I may not know specifically how I want to die, but I have a few ideas and I certainly know ways that I absolutely want to avoid. For example, I don’t want to be heavily drugged while I waste away. And I don’t want to live past the point that I am able to experience the beauty of the world or find joy in my existence. If I am going to suffer, there had better be a greater point to it, either in some valuable contribution I am still trying to make or some important project I am trying to finish, or some amazing moment I am holding out for. Because those are things that create meaning, and life should be meaningful as long as we are living it. But then I want to be able to die with dignity, on my own terms.

Then there is the issue of our relationship to our own mortality. It isn’t so much that we are trained to not think about our mortality, but we are trained to ignore it. Until it slaps us in the face and we have no choice. Maybe it’s in the form of a survivable accident. Maybe it’s in the form of a close friend’s sudden death. But when we are young, unless that slap happens, we live each day like we are immortal. We don’t plan for our own deaths (which would be someone else’s problem anyway) because we have so much damn time ahead of us. Unless, of course, there is a terminal illness or old age that has to be dealt with. But then, even if we gradually come to the realization that we probably should open a dialogue on the subject, it is still going to be tricky to engage other people in the discussion.

Because no one wants to talk about it.

Because no one knows how to talk about it.

And no one wants to think about what it means to them.

All this, in spite of death being the natural culmination of life. The one thing that everyone is headed for eventually. That which must not be named is something we should all be talking about, even embracing. We should be able to laugh over it, though maybe not in a Weekend At Bernie’s fashion, because, let’s face it, that might just be in poor taste. But the cult of youth that rules Hollywood should not be the only touchpoint between individuals and aging in our society. And the eternal search for the Fountain of Youth (or its illusory counterparts in cosmetics and plastic surgery) should give way to an acceptance of mortality and the embrace of the time we have — not so much the time we have left as the time we have here. Because we are in the moment and should be enjoying the moment, continuing our own participation in life as long as we are able.

And then we should be able to deal with those questions of “what next?” that will inevitably follow. And the discussions should be allowed to be frank, uncondescending, open, honest, blunt, funny, awkward, joyful, sad, nostalgic, a little bit crazy, but also clear and understandable and without guilt.

I talk a lot about removing the stigma from cancer, by redefining the narrative and learning to talk about that umbrella of diseases in a more modern, aware and truthful manner. It is time to remove the stigma from death, as well. Until death is a comfortable component of our personal identities, until our culture moves away from denial of our own mortality, we will continue to stumble around the subject and fail to make progress in addressing end-of-life issues. But there is one thing we can do now: talk about it.

Be a part of the conversation.

Refrain from shrinking back at the mention of someone dying. If death scares you, ask questions. When you are around people with a different perspective or tradition, engage them in a dialogue about what they do to honor or celebrate the dead. Look within our own communities for alternate perspectives and get to know what your neighbors think — you may rely on them one day for compassion.

The more we talk openly about issues of death and dying, the less frightening it will become. And the less frightening it is, the less likely it will be that we will make bad decisions — or simply fail to make them until it is too late.

Getting comfortable with the idea of death, being able to say the tough words over and over until they drip off the tongue like honey, is not to be desensitized. Rather, it is to be more in touch, more aware, more grounded in the reality of our existence. Death is not something to fear or hide from any more than it is something to rush toward. Death simply is. It’s a bookend, sometimes for a long shelf and sometimes for a short one, but like birth on the other end, it keeps the contents of the shelf neatly contained once it’s in place.

I celebrate life every day that I have it. Perhaps living with a so-far incurable disease makes me more aware and more accepting of my limitations than some other people. But it also makes it readily apparent how difficult it is for many people to face the end, much less simply talk about it. So my gift to you today is a conversation starter.

“What do you think about death?”

It’s a simple question. Will the answer be?



Perspectives on Death

Here is an excerpt from an interview I did with Birla Hood, a certified death midwife, that will be available in longer form on The Deep Breath, a podcast available to subscribers through my Patreon page.

And since we were discussing alternative cultural perspectives, I thought I’d conclude with this festive rumination on an old-fashioned Irish wake…

 


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Addendum:

Here are some nice links that offer more perspectives on this subject;

http://www.hollypruettcelebrant.com/blog/with-a-little-help-from-her-friends

http://www.wweek.com/news/2016/10/19/meet-two-portland-women-who-make-their-livings-talking-about-the-ultimate-taboo-death/

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