18. What Do You Mean, Never?
The Denial of Death and the Impossible Nature of Hope
January 11, 2023 was four days before Sally died. As I write this almost 15 months since, the emotions come flooding back, immediate and I feel like I’m there. I originally wrote this about a month after she’d died and now, again…I am there with her, in that room, in that hopelessness that I can see with the perspective of time. I want to be angry with myself for being so naive, for allowing myself to consider that there was…what? What?
A chance?
It’s simply the strangest thing. Did I know she wouldn’t leave the hospital this time? Did I just pretend? Was hope a sheild for the inevitable, crushing goodbye? These questions…all these questions…and the only answer I have now is that I didn’t live in that death world. I didn’t live there and neither did Sally.
We made a choice. I would say that she made the choice originally and I did my best to follow her and support the choice and by the end I was as much on board with the choice as she ever was, maybe more, as evidenced by the story below.
She made the choice to deny death.
She made the choice to deny death.
I made the choice to be with her in that.
This is the universe of this story and I probably see it as clearly as you could see the bottom of the ocean from the middle of the sea…I see what I can and I can’t possibly see it all. That’s my disclaimer.
We denied death together and the richness of that decision is what I’m attempting to tell. These next posts will be about her last days and the hardest times I’ve ever been through in my life. I am swirling with judgement and ease and emotional pain and grief. But I want to understand, I want to see clearly and I want to be close to her. And I believe through this sharing, I get closer to her. She would like this. She would like to know that you were reading, she would like to know that I was writing.
My god there is so much more to this story. I hope you stay with me.
Chapter 16 –
I woke up on the morning of the 11th to improvement.
My feeling was so hopeful. Her pulse rate had come down under 100, a huge, small victory. There was no fever, huge, small victory and she hadn’t needed more oxygen while her levels had stayed high. Looking back on this it seems so naïve, but I honestly felt like maybe the ship had turned and maybe she was getting better, her body responding, maybe it would keep going.
My thoughts of next steps including getting her off high flow oxygen was so familiar, it was born of the previous six years of always looking at a next positive step, what’s a next positive step how can we defeat this by finding at least one, next positive step. Sally and I did this together, baby steps, we would say, baby steps. I’m glad I felt this way, looking back. I’m glad I was able to be this person for her. I can’t even express how much it means that I was able to be this person for her.
And so, the day of the 11th was a “great” day. And you know that’s what it was…not in quotes. It was a great day. It was great because it wasn’t worse. It was great because she was alive. It was great because she knew where she was, who was around her and what was going on, even if it was for only parts of the day. That was a great day.
However, looking back at my messages, I can see that in some ways it was an awful day. This is cancer. Even as it wasn’t worse than the day before and even as that is a victory. It wasn’t getting better, there continued to be no answers. As much as I wanted her to get off the high dose oxygen machine, she wasn’t getting off it. The doctors did not have good news, in fact they appeared to not even acknowledge the goodness that Sally and I both felt she had experienced in the early morning of the 11th. I didn’t ask Sally about this but she probably felt this way a lot anyway, but I had never felt more alone (with Sally-when I say alone, I don’t mean without Sally, I just mean without anyone else) than I did sitting in that hospital room, excited for the mini-victories, making them mean something that no one else (besides Sally or I) thought they meant. I felt hopeless there, in a way I had not felt before as the doctors gave more bad news.
It didn’t seem to matter to them and looking back, five weeks out, I can see why more clearly. They didn’t share the same space Sally and I did. They never did, although I do think Sally surprised them over the course of the cancer. They always knew she was going to die, they certainly did everything they could but there was never any allowance that she might get better. I think they were surprised that she lasted so long and more, lasted so well. And so even as Sally and I shared some positive vibes, we shared those in a bubble surrounded by a grim prognosis. Sally, although her levels seemed better, still could not breath with less oxygen and when she removed it, like she was prone to do, her levels went down fast, in a sense, even though she could be and was still fully conscious, the machine was keeping her that way or at least aiding tremendously.
I felt like I was living a dual existence; again, retrospect. I was talking with doctors and hearing for the first time, they thought family should come, and sooner rather than later. And I was holding Sally’s hand when I could, talking briefly when we could and trying to stay positive. But I needed to communicate to her the news.
I needed to tell her the doctors thought that her family should come.
Edited 4/21