For some of us, ‘home’ is a straightforward idea. For some of us, it’s possible to point to a spot on a map and say with conviction, ‘here.’
Yet for others, like me, the definition of home has been a little more nebulous.
At 18 I moved away from the remote Northern Ontario village where I was raised, yearning for something more than dirt roads and pig roasts. As a budding artist, I longed for the stimulation that could only be found in a town with at least one traffic light.
For a while it was possible to ‘return home;’ soon, however, as it became harder to justify the gruelling 8-hour Greyhound trip, or the price of a plane ticket, it grew increasingly clear that I would not be moving back. And so, I found myself suddenly feeling untethered, adrift without a firm sense of belonging to a place.
Later, degree in hand, I moved to a city whose average apartment building housed more people than the entire population of my village, and whose chaos and cold surfaces once prompted me to vow under my breath never to call it home.
Yet now I found myself breaking that oath. But for good reason: this city, alive and pulsating, seemed to be calling out to me, asking me to become a part of it. This city promised something more …
But what? I wondered. That feeling of belonging? How could a city so vast, so cold — so unknowable — ever be called home?
The cardboard boxes were still sitting unpacked when I opened my laptop to look up volunteer opportunities. I needed an in, a way to meet people — and I found one in the form of the local palliative care network.
I had been reading The Tibetan Book of Living and Dying, which proposes an alternative to the Western approach to death and dying: that is to say, one that does not shy away from death, but instead normalizes it. It is an approach that has as its foundation a belief in the dignity of every person, especially those who are approaching the end of their life.
At the time, my own grandmother’s health was failing. Hers was a story familiar to many families. There had been the discussions about the merits of moving into a senior’s residence; the delicate persuasion to make the move; the stress of the transition once the decision had been reached; a bleak prognosis of cancer; some moments of levity; many trips to the hospital; chemotherapy; tests and tests. And finally, the realization that she would not heal, that she would soon die — and with it, a confusing sort of reshuffling of priorities.
Suddenly, as one palliative doctor had put it, our focus for our memère entailed not so much adding days to her life — as adding life to her days.
In the meantime I had begun my months-long training program as a hospice volunteer, and the job description turned out to be as varied as it was humbling. They taught us how to change a bedsheet from beneath a bedridden client; how to respond to a client working through questions about dying; how to support family members struggling to make sense of a confusing and stressful situation; how to listen with patience and objectivity, all while being cautious not to become embroiled in family affairs.
We learned, in short, the art of dignity.
As training wrapped up and I began my client visits, I would discover that a dignified death can take as many forms as there are individuals receiving care. For some, dignity means having someone with whom to watch TV. Sometimes it means cutting their toast diagonally, without crusts, just the way they’ve always liked it.
Dignity has looked like keeping a client’s loved one company while their partner received a bath from a support worker. Or simply sitting in silence as the client nodded off into sleep. (It was with some practice that we volunteers adjusted from calling them ‘patients’ to ‘clients’ — another deliberate distinction made in the name of altering our perception of the person. Again: dignity.)
One client, a worldly and erudite man whose diagnosis of ALS had robbed him of his ability to speak, asked every week to be read the latest issue of The Economist. ‘Begin with the obituary,’ he would type on his state-of-the-art eye tracking keyboard. The irony of his request was, I’m sure, not lost on him, and at first made me a tad uneasy. But as I read aloud about the remarkable lives lived by scholars and poets and athletes, I would look up periodically to notice my client, eyes pressed shut, nodding subtly as if hearing his own impressive eulogy. As if to confirm that he, too, had lived a life worth describing for others.
Another client enjoyed playing for me his collection of Chet Baker records. In his dim apartment living room, surrounded by stacks of well-worn milk crates and dusty piles of documents which at one time must have held some meaning, the two of us sat slouched in hard wooden chairs as we listened to Chet’s trumpet wail and fly.
That was on good days; my client spent his less-than-good days curled in bed, the curtains drawn, drifting in and out of sleep while I sat nearby, scanning the framed photographs that lined the cluttered dresser. He lived alone; no family ever came to visit.
When I became a hospice volunteer, I did it to meet others; but I hadn’t at first weighed the irreducible fact that the people suddenly entering my life would just as suddenly depart it. (But then, to some extent, isn’t it true of everyone we come to know?)
After a couple of years of work with hospice, a realization began to set it: that for the first time in years, I was filled with a sensation of being grounded. Of not wanting to be elsewhere.
It was in the unlikeliest of places, in this inscrutable city, in the homes of dying strangers, that I rediscovered a sense of home.
Of course, a stated goal of hospice care is to foster this feeling of comfort for clients. Though to have experienced it as a volunteer as well should perhaps not be too surprising.
After all, from the Latin genitive hospitis we get the word hospitium, meaning a place of rest and refuge. (Centuries later we would start using the word ‘hospital.’)
Notably, hospitis had another evolution: the English word host. As in: one who shows hospitality to guests or strangers.
In this way, our modern hospices have retained both meanings: a hospice patient receives the rest and care of a hospital, but also (and perhaps more importantly) the feeling of freedom and comfort which one can only get from feeling chez soi. It is a notion at once simple and revolutionary.
And it is the best definition of ‘home’ that I have found. Because what is home if not any place where it is possible to feel cared for and respected?
What is home if not a space where we can be surrounded by the people we have come to know — if only for a short while?