When I’m reading about healthcare and what makes life meaningful, it seems that experts operate under the assumption that everyone fears death.
I’ve never understood that. While I’d like to avoid suffering, death doesn’t seem like something to be frightened of. Which is convenient, since it’s in that category of things none of us get to opt out of.
I’ve been reading about moral philosophy and debates on how to handle care work in the covid-19-era, so this tweet made me chuckle:
How much time is enough time to complete being a human?
There’s that Atlantic essay that made a splash a few years ago on accepting a natural death (ie. refusing extensive lifesaving treatment) after the age of 75.
Plenty of us have been to a funeral (or a zoomeral) where it’s been said that someone has accomplished more in their 14 or 25 or 37 years than most people do in 95.
What is it we’re trying to accomplish? Is there such a thing as being done? I’ve certainly heard of people knowing it’s “their time,” but how do they know?
One of the core things about care work is ensuring that all people are able to accomplish whatever it is that gives their life meaning and that they are able to choose the timing of their deaths as much as any of us get to. It should be the person or their chosen proxy determining when to opt for comfort care over a fight for longevity.
The way care work is so often dumped on one or a handful of overworked, intentionally impoverished people is that our society is creating an unnecessary zero-sum decision: either the patient gets to have a meaningful life or their primary caregiver gets to have a meaningful life.
When care work is full of all-or-nothing choices, it comes to require a level of dedication that demands martyrdom.
This is why so often I’m told that “my life is on hold” even when obviously no life is ever on hold. There is no hitting pause when a child is born with a disability or when someone is given a life-altering diagnosis.
The way the choice is framed is often: Someone can live at home and you can sacrifice your life for theirs or you can put them in an institution and live your own life.
That’s rarely how it actually plays out, but it’s not entirely false. It’s complicated.
Thanks to the incredible work of activists, some of us have more and different choices. As I laughingly explained to someone the other day, I’m not anti-institution because when all the choices are bad, I want all the choices I can get. Bring on the smorgasbord of flawed options; don’t decide for me.
Do you think dying bears have regrets?
Have you clicked on one of those articles on regrets of the dying? Or read one of many books? Perhaps you’ve written one.
I thought of that genre the other day when someone told me he flew to another country to see a concert because he didn’t want to die with regrets. I had the impression that usually deathbed regrets were about family, friends, and community, but music is a spiritual and social experience, so fair enough.
As much as care work can have sublime moments of connection and intimacy, it can also be a sisyphean slog of grunt work and self neglect. It forces us to reckon with our past trauma and our core values. It can be physical labor beyond our abilities. It’s so often paired with financial precariousness that unleashes a cascade of repercussions.
This is why care collectives perform care work as volunteers for strangers. This is why no money is enough for the grueling labor of care work. It is all of the above and so much more.
What do you do that makes you feel closer to completing the task of being a human?
How will you know you’ve completed being a human?
The National Alliance for Caregiving and Caring Across Generations are collecting the stories of caregivers for a report. If you’d be open to speaking to someone for an hour about your experience, you can let them know by filling out this form.
I don't even feel human anymore. Or, I suppose, I feel all too human in a world without any real humans left - kind of like the scene in Spirited Away when dusk is setting in and Chihiro sees the place turn into an actual ghost town. As in the movie, everyone in the world is cold, distant, and scary, and so I've become at risk of losing myself and disappearing, just like Chihiro. [If only all I had to do was eat some food to come back to myself!] Why do I feel this way? Because no one truly empathizes nor cares anymore.
Other people's emotions and problems have become the ultimate taboo and the easiest things to dismiss; and, in an age that favours individualism, 'self-growth,' and stereotypical 'success,' behaving 'discerningly' has become the easiest to defend as the way one should 'set boundaries.'
But the reality is this: Judging and ghosting people is not kind. Dismissing their lived experience and emotions is not kind. Discarding friendships because of one's own judgement of another person, especially without discussing it with them first to try to work through things, is not kind. Disregarding people's legitimate health issues, blaming them for their symptoms, labeling them as lazy and negative, and implying they're useless, is not kind. Refusing to see positives in others is not kind. Ignoring what there is to be grateful for in a relationship, is not kind. Condemning others for their struggle and where they're at in the often rigged process of betterment, is not kind.
Being an arrogant bully in the name of 'self-growth' and 'spiritualism', is not kind!
I've had far too many people treat me this way in the past 4 years. I have things to work on, sure; and I am working on them. It's not me, it's a trend; one that crushes people at their most vulnerable.
Beware the self-growth hypocrite who thinks you're great until you've gotten comfortable and trusting enough with them to disclose your true vulnerabilities, and then thinks you should work on yourself - by their standards, for their benefit - or else you're worthless to them. It's the most toxic type of person I've come across - and I grew up in an alcoholic household!
Interesting and timely post for me. Hubby is under Hospice care, and I was just reading about this in Barbara Kearns' book, "The Final Act of Living." Thanks for a different perspective.