And people mistake me for being “angry all the time.” I’m not angry all the time. But you’re not used to someone engaged with a sense of urgency maybe. So you mistake it for aggression. That’s not what it is. But I do know what I’m talking about. All you’re hearing from me today, all you’ve read in the book is what I saw.
You talked a lot about that undertow of dread and you paint a very vivid picture of how miserable many people’s deaths are in this culture. You must have seen the other side as well with some people to know that it can be different.
No. Not very much. Not very much. I would tell you easily 95 percent of the people I worked with died badly. By any sane measure of what dying well is, they died badly. Now 95 percent is not a trend. It’s not a demographic blip. What would you call that? Ninety-five percent of anything. What is it? It’s the way it is. Isn’t it?
That’s the way it is.
Okay. And if it’s a calamity of catastrophic proportion, what do you call it? A plague. And it’s that proportion. And it’s endemic now. You can barely talk about it and yet it’s seen because it’s so pervasive. It’s in the eye. To die badly is in the repertoire of dying people. And it’s the default choice that’s made. Now I know, as you do, nobody chooses to die badly. Those 95 percent, they didn’t even think they were dying badly for the longest time. Because when does your dying badly begin? Does it begin in the last toilet bowl twist of anguish and agony and sedation? Is that when it kicks in? That’s not when it kicks in. Where does the sedation come from? I mean the invocation of sedation. Where does it come from? Is it a pain management strategy? I’m telling you it isn’t. Pain management and sedation are different strategies responding to different things. The dying people on my watch—this is what they all had in common. Their bad deaths were characterised by the fact that they had become small, unique, particular to them. A personal possession which they owned and they dispensed it according to their own norms and understandings and misunderstandings. And those misunderstandings were served and protected by the families around them and by paid professionals who were paid to do otherwise. Full co-conspirators. And the smaller it got, the more personal it became, the worse it was. That’s what they all had in common. So who chose that? Nobody chose that. Then you realise the dying is an iteration of the cultural norms. It was the fullest articulation of the way people had lived as subatomic particles. As what I call the snowflake theory of humanity. “Everybody’s unique! The world has never seen the likes of you!”
“And your dying will have the same gorgeous particulars attending to it!” What was the first line in Anna Karenina? Do you know it?
Yeah, “All happy families look alike, all unhappy families are unhappy in their own way.”
Okay. All of the managed deaths look alike, and I just described them to you. And all the unmanaged deaths were remarkably non-compliant with this norm I’ve just articulated. Not intentionally non-compliant. Some minority of people simply had found, or stumbled across, or backed into, a willingness to engage their death as a god. Not that anybody ever said it that way. And the god of death is a god, as is the god of grain, and the god of the ocean, and so on. And all it means is for you to craft some understanding of and become a bit of a practitioner of the etiquette that approaching a god asks of us. That’s what it is. It’s not subservience. It’s etiquette, but of a deep and radical kind. And if you understand your death to be a deity, not an executioner, then what repertoire do you draw upon? Not endurance, not coping, not acceptance. What? Something closer to devotion. Something closer to learning. The very undoing of trauma. Why didn’t I see legions of this other kind? You can bust me on what I’m about to say. But they didn’t need me, you see? There was no reason for me to be at the good ones. By definition, what’s my job? To become obsolete in people’s lives. I know people in this business who think it’s their responsibility to be at people’s doorstep every other day when the dying becomes active. To become part of the family? My take on it is if I’m worth anything to these people at all, I’m gone by dying time. Right? Otherwise I’m a bit of a ghoul frankly. Where I’ve worked out an arrangement where they can have continued recourse to me: what does that sound like? Sounds like job security. Right? And a lot of people trafficked in job security. Pretending that the people needed them. But you crafted that neediness. So more malpractice, you see? Surely your responsibility is to work yourself out of a job.
So in coming in and attempting to help people see their death as an angel rather than an executioner, some of them might have taken that as you coming in to break all the furniture and trash the place?
Yeah. Well here’s the thing. Let us not trade inadvertently on the idea that people with a terminal diagnosis get it and people without a terminal diagnosis don’t. And that when you’re dying you become a spiritual genius mysteriously. Or when you’re not dying you’re a lunkhead like the rest of us.
There is nothing conferred upon you by way of understanding or intuition or anything that comes with a terminal diagnosis, frankly. It is a life-altering event within very specific limits. And this is the grotesquery of it all, that I didn’t see a terminal diagnosis change everything. Did a terminal diagnosis change a dying person’s understanding of what it means to love and be loved? I almost never saw that. What they did instead was they re-entrenched their pre-morbid understanding of love. They built it higher and stronger. Love is not giving up. And love is staying with it, trying another round of chemo. Honest to Christ I’m telling you this is what I saw. How has their understanding of what it means to love somebody been changed by the fact that they’re dying? In other words, who’s the god here?