we circle, instead. get lost in verbosity, in establishing rapport, in hiding from the truth that’s staring us all in the face. we are hesitant, second-guessing every word, parading in the guise of transparency.
we’re in rooms with bright lights, plastic beds and fancy instruments. there are splashes of colour, blankets and bright sweaters from home. large windows show sun and clouds and leaves changing colour and snow blanketing the world
I’m working on my crocheting. my daughter brought me three balls of yarn … and I still haven’t really read much of my new espionage thriller. so I have quite a busy day ahead of me
let me just ask you everything: your secrets and desires and shames. let me document it all, on a scale of one to ten
oh, what an awful question. I don’t know how to characterize the pain. out of ten? it’s really just always there, but it’s usually manageable. sometimes it’s not.
I’m horribly embarrassed by what happened, but I’m better now that I’m all cleaned up. the nurses here have been wonderful.
I try to offer you comfort, medication, a sympathetic smile. sometimes, if you are in too much pain to speak, I’ll talk instead. I’ll tell you about the weekend, let little things slip through: how it was Diwali, about my friend’s wedding, what the mehndi on my hands means.
sit down. sit, sit. bring in a chair. and enough with the small talk. tell me, how are you doing?
sometimes, I catch myself. I don’t know if what I said is too much — did I make you long for something you can no longer have? was I too open, is this relationship still professional? and then I think: does that even matter at this point?
your sister, is she beautiful like you? is she plastic-beautiful, or soul-beautiful?
please, take this [hands over a jam packet]. it’s for you. give it to your boyfriend. oh, you don’t have one? well, it’ll help you get one, then
in return, you’ll share things, too. you’ll tell me about your children, about your puppy (whom you always wanted, but can’t play with because you tire so quickly)
we talk and I’ll think: soon you won’t be here anymore. we talk and then suddenly, we’re talking about it
how you’re in pain, you’re short of breath, you can’t get to the commode anymore. you hate the indignity of it, but you have to use the bedpan regularly. sometimes, there are near-daily changes — and other times you’ve been stable for so long, you’re wondering why I’m even here, you’re so clearly alive
no doctor has ever told me how much time I’ve got left. will I live to see my son’s ninth birthday? it’s in February … and what about his tenth, eleventh, twelfth birthdays? will I live to see my grandchildren?
and always: you are sad and joyous, kind and frustrated and silly
you make jokes at my expense, grimace while taking horrid medications
you can barely speak, yet you manage to tell me to sit down when I’m tired of standing
you want to talk about anything but yourself, so you tell me I’m going to have to stay a while … and then you worry you’ve taken up too much of my time
once, you asked me to help you dress, because you couldn’t stay in your nightclothes for even a minute longer
what are your goals of care, I ask. would you like heroic measures? you don’t want to make a decision without your loved ones, you say. we talk about what “palliation” means, and how it’s about symptom management. really, we’re all palliative, I tell you, earnestly. I feel foolish and naive and determined not to appear this way.
my questions feel silly because they are — what you’d like, what we’d all like, is not possible.
my questions feel silly but they’re not — they remind us of your autonomy, of your loved ones, of what is still possible.
I’m all bones, look at me. what’s the point? I can’t even drink water anymore. I just swish it around, then I spit it out.
I was a personal support worker before, so I know why you’re asking all of this. but I mean to get better and go home to take care of my son. so you don’t need to ask me that.
***
Today, I learned you passed. It was comfortable, I’m told. You were surrounded by your family. It was a relief. You were tired of the pain, of being a burden. It was sudden, it was prolonged, it was a shock, it was welcomed, your death.
I don’t know how to process this information. I can’t rationalize it — that yesterday you were here and today you are not-here, which is somehow different from gone. I feel a blank kind of oppression, a pressurized greyness.
My teachers, in their kindness and wisdom, understand this. They don’t look for answers; they don’t offer rationales. Instead, they mourn. On the ward, they cry and grieve openly; they invite me to do the same.
Our existence, I am learning, is made up of brief moments, in which we are all engaging in the thing that makes life, that makes living, possible: love.
Love is a cool, damp cloth that provides relief to indescribable pain. It’s a jam packet that fosters new connections. It’s the exchange of stale pyjamas for fresh clothing after a trying morning. Love is three new balls of yarn, the sound of your laughter as your puppy licks your face, the tears in your wife’s eyes when she sees you being thoughtful. It’s our team, crying after having finally said goodbye to a friend on the ward.
Love is our grief, our joy, our caring in the face of the inevitable. Love is what allows us to see that to be living — while dying — is still to be alive.
Footnotes
This article has been peer reviewed.
This essay won the 2020 Undergraduate Narrative Award for Palliative Medicine, administered by the Canadian Society of Palliative Care Physicians.
The patient is a composite of several encountered by the author.