Unforgettable

As Joseph Campbell† and countless sages have pointed out, all human fears circle endlessly around the topic of death. Fear of anything is, ultimately, a fear of dying. Whether triggered by spiders, poverty, speaking in public or being alone, it all comes back to a basic fear of being separated from those whom you love and/or that which is most familiar to you, which is life.

And our attachment to life and “staying young” is ferocious.
It has spawned the industries of cryogenics and cosmetic surgery, it drives our healthcare, fashion and food decisions, it allows insurance and pharmaceutical companies to exploit us (not to mention security providers and gun manufacturers), it makes us cringe from anything mildly risky or dangerous, and it keeps us caught up in little bubbles of delusional safety. In the end, though, none of this matters. You’re still going to die.

Most of us want to die in our sleep in our beds, and we want to have our loved ones around us. I’ve never heard anyone say otherwise. Yet it’s something over which we have very little control, so again – lots of wishful thinking! You can certainly plan a good death; you just can’t count on the universe accommodating your plans, however well-intentioned.

I think about death a lot, possibly more since I began my caregiving role. I was that curious little girl who dug up the family cat after it had been buried for a month; I wanted to see what the carcass looked like (crawling with maggots, of course, and fur and skin disintegrating; it was both fascinating and disgusting). I read the book “Death Be Not Proud” as a young teenager, and was profoundly moved by this family’s account of a teenager with an incurable brain tumour. As stated in the Wikipedia entry, “Frances Gunther, his mother, takes care to have conversations with him about the ultimate issues of life and suffering as addressed in many cultures worldwide, making spiritual writings accessible to him and impressing on him the value of his thoughts and the effect of his actions on others.”

Recently, a reporter for the CBC reached out. They were doing a piece on assisted dying, and wanted the perspective of an Alzheimer’s caregiver. I passed the opportunity along to my friend Amazing Susan, who has more experience and probably a better-formed opinion than me… but it got me thinking about death again, and how, even when we know we’re actively dying, we still cling, negate, negotiate and try to avoid or control it.

My father has told me he’s ready to go. “I’ve had a good life,” he says, pointing out that he’s accomplished all he wanted to, and does not feel the need to linger. Like so many, he does not want to end his days “in a hospital with tubes keeping him alive.” My mother has said a few times “Oh, just let me go!”; more an expression of her fear of being a burden, a nuisance. Which she’s not, of course. Both of my parents deserve and have our unconditional love and care right up until the moment they decide they don’t want to breathe anymore, or until their body decides it for them.

Lately, as I follow my muse, I’ve been reading about the Zen Hospice Project, a collective movement towards addressing death and dying more openly and honestly. I’ve been reading about Death Cafes, where people gather to discuss death – everything from emotions to logistics, perceptions, fears and misinformation. The more I read and absorb, the more I realize that the subject of death shouldn’t be taboo, terrifying or even daunting. Yet bring up the topic of death, and people more often than not look at you as if you’ve crossed an imaginary line. It’s as if we are suspicious that we will hasten death if we talk about it, or that we will be bringing a curse down on our loved ones.

We need to talk about death more. We need to embrace it, and plan for it, and disempower it as a mysterious event. There’s no more mystery to death than life; when we are born, we take in our first breath of air. When we die, we exhale our last.  As unpopular a subject as it currently is, it has become clear to me that, in denying its inevitability, we also squander the opportunity to have a beautiful death. As a die-hard romantic (pun intended), if and when I am made aware of my imminent demise, I see my beautiful death as an opportunity to write heartfelt goodbye letters to all the people who have made a difference to me in life…

What might be your beautiful death? And how might it be a testimony to your beautiful life? How can I help make my parents’ deaths more beautiful while they’re still alive? As odd as that sounds, it’s an important question to ponder, not squander. Because the real fear for most of us – of dying in a hospital bed intubated and alone – is too often the rule, not the exception. And if we don’t talk about it, nothing will change. 

“Death, be not proud, though some have called thee
Mighty and dreadful, for thou are not so;
For those whom thou think’st thou dost overthrow
Die not, poor Death, nor yet canst thou kill me.”
– John Donne

† Pathways to Bliss. Joseph Campbell, 2004.