14. What Do You Mean, Never?
She Looked So Peaceful, She Looked So Beautiful / Gone
Hi everyone. I’m updating the format again for this, still looking for something that will best reflect the nature of this story and be convenient for you. I’ve combined the story of “A cancer Story” in Chapter 13 below with a poem from “What Do You Mean, Never”. This is one post with both experiences and I like the way that feels to me. If I continue with this way, I will just post both under “What Do You Mean, Never”.
As I wrote these below I can feel and see myself getting closer and closer to her death, the first section “She Looked So Peaceful” is before she died and the poem is after. Both were written after, but I found as I was writing AcS, time began to slow down. There was so much to tell in the smallest amounts of time. How do you communicate a last look or a last kiss, or a smile? I took my time, I had no choice really, and I’m curious to know how it is reading for you, especially in the next few weeks of posts as I may have written for hours about what actually took a moment.
For those of you you that knew/know Sally this will be emotional reading and I hope it helps you in some way. Please feel free to share and thank you for reading.
Chapter 13 – She Looked So Peaceful
Sally’s last message to our WhatsApp group was on January 7th, the day after she was admitted for the final time. She was happy about her urine being pale yellow because she’d been battling UTI’s for months and her urine was regularly cloudy and thick. Laying in the cancer ward with multiple infections, hooked up to IV drugs and end stage cancer, having pale, plentiful urine was a small victory and our lives for the past five years had been all about small victories. Her message to the group was a simple wish for someone else.
This was 8 days before she died and five days before she went unconscious. At this point it had become very difficult for her to converse, to check or hold her phone, she wasn’t awake very often but when she was awake, she was with us and always gracious and always thinking of others.
For months now, and for years really, Sally and I had been talking about end of life. When she was first diagnosed in 2017 it felt more like the responsible thing to do. We felt so removed from the reality of end of life even with the diagnosis. We had not yet been defeated and were scared and it felt like a box you ticked, the cancer talk about life and death, so we ticked it. But when she was diagnosed in February of 2022, it changed. After five years, two remissions, 2 courses of treatment, we were tragically seasoned. 2022 was different. In the brain, in the spine, talks of chemo and radiation – horrible shit – horrible and we knew it. But even knowing like we thought we did, it wasn’t enough, it couldn’t be. Some know this. We could never be prepared. We could never be ready, no matter how much or how deeply we talked about it.
We had been in and out of the hospital so many times in the last year, Miller 5, back home, Miller 5, back home, Copley, back home, Miller 5, back home. There had always been a “back home”. And looking back on it, we always thought “there will be a back home”, no matter how bad it gets. I’ve mentioned this before, and I’ll probably continue to talk about it because it’s such a big part of my experience of Sally’s death. The difference or the juxtaposition of “knowing” and “reality” …
This last time, as she worsened and as the doctors gave us bad news after bad news, I was able to communicate to friends and family that they should come see Sally because she didn’t have much time left. I could say these words, type these words, think these things…but I did not understand what they meant. Understanding what these words meant had no bearing on what they actually meant. Maybe that’s the same thing, maybe I’m being redundant, but I knew what to do, and I knew why…but I had no idea what it all meant.
In the past Sally just “did better” and we went back home.
This time, with the cumulative effects of the radiation, the steroids, the chemo…her “treatment”, her body could not bear the damage any longer (this will be part of a different chapter). I spoke to the doctors, I heard their take, there were new doctors now, Palliative Care doctors and teams of people that were different from before. It was a different approach, this time there were no answers. Not that there ever were.
“We don’t know”
“It’s an infection”
“It’s the result of the years of treatment”
“We’re throwing everything we have at it”
“Ok” I would say. “Thank you”.
“Any results?”, I would ask?
“No, we don’t know. But we’re throwing everything we have at it”.It’s really something looking back. In that moment, “throwing everything we have at it”, what that meant in the moment, I was grateful. Looking back, I was simply desperate for hope and those words, as empty as they were, gave me hope.
But there was no hope. And that’s the hardest thing and the thing that I need to grapple with. It is the reality that messes with me and us, as humans. It points to finding the meaning of our lives…in the reality that they will end. There is nothing I could hope for, nothing she could’ve hoped for, that would remove death as the final, absolute option. There is no hope in that regard so hope, in a way, doesn’t matter. And, at the same time, hope is real.
I hoped she would wake up.
As I spent time with her at the very end, after the gear had come off, after the injections had stopped, no more needles, no more beeping machines, no more forced air. After it was just her, my god, she looked so beautiful. She looked so peaceful. I really didn’t understand it. She looked better than she’d looked in more than a year. Serene, restful, un-furrowed, blush in her cheeks. I though, “why, why wouldn’t she wake up, can’t she just wake up, she looks healthy, why can’t she just wake up”?
She looked so beautiful, she looked so peaceful.
Edited 3/31/24
Gone
There’s an ocean beneath me
and a universe beneath that
infinity still below
and then…How?
How?The most common thing
literally,
the most common thing.
And yet
everything stops
and it’s ok to stop
and we all want it to stop.Everything stops
and something else starts
and in the middle of that
is probably art.Such human pain,
where have you been
now that you’ve come
from deep within.Rising up in great bursts
like nothing before
I’m down on my knees
I’m down on the floor.Like a child who’s ripped
from his mother’s embrace
in a man’s body
shakily now face to face.The impossible loss
without a doubt
the sure expectation
that she’s still around.and the flat light reality
she’s gone…
Gone.
Edited 3/31/24