15. What Do You Mean, Never?
January 9th, Six Days Before and A Poem From After
Hello everyone,
I’m continuing to evolve my expression here and have added a reading of the article and poem below. I find that listenting is enjoyable and I also found the reading to be cathartic and good. I hope you find it similar. In the first section of the post we’re getting closer to Sally’s death and time slows down, it was written on the 9th of January, 2023 and she died on the 15th. The second section is part of the collection I wrote after she died. Thank you for reading and/or listening.
Chapter 14 –
On January 7th we woke up on Miller 5 and Sally sent her last message to our group feed. For the next few days, although it appeared as serious as ever, things really weren’t too far from what we had experienced in the past. Although looking back now and knowing these were her last days, obviously…
Obviously…what?
There’s nothing obvious.
That’s what’s so infuriating, so exhaustive, so un-relenting…nothing is obvious. Sally wasn’t “getting better”. Each time we’d come into the hospital she’d be a little worse off, but she’d “recover” and we’d go home. Our hearts and minds were in this mode, this mode of “she’s not going to die today”. It’s a strange mode to be in because there was a lot of evidence pointing to the opposite (you could say it was “obvious”) and because, well…she died.
It doesn’t matter, in some ways, because in those last days, she functioned as herself. Her body, so sick and weak, her mind, struggling to make sense and accept what was coming, her spirit as gracious, grateful, and warm as ever.
We did our normal process on the 7th and the 8th and the 9th, at least while she was awake. She slept a lot during these days, but when she was awake we watched football, basketball and cooking shows. We held hands and talked. We tried to decipher feedback from the docs and checked test results and her urine bag, always checked her urine bag…small victories. And there was always Jake. It didn’t matter how much discomfort, how tired, how many drugs…at least until the end, she always “woke up” to him or talk of him, and these few days were no different.
Our friends and family support team was online, some far, some near. The local folks were coming in to help, to see and stay with Sally while I did errands or just took a breather. At this point she was mostly asleep but when she woke she would see whomever was there, recognize them, maybe have a chat and back to sleep. She was on heavy doses of antibiotics, the hospital staff didn’t have an answer and so their answer was the “throw everything” at it, which despite not sounding like much of answer, actually felt like one at the time. She was also taking low dose opioids and ingesting some THC. It was clear she was having a hard time. It took so much energy for her to focus on people, but she did and when she did she was all there; it just came and went quickly and then back to sleep.
It was the night of the 9th when she really took a turn for the worse.
So far, we had been ok. I’d been sleeping over, Jake had been spending nights at home and we’d been talking with him when we could from the hospital. We’d opted for most of the year to have him remain at home, with friends, in as much of a regular setting as possible. He would come to see his mom and couple of times during her hospital stays, maybe he’d stay over one night, maybe just dinner, but it was in and out because, well, she always came home and because we thought as normal a routine as possible was good for him and for us. For these few days, before the 9th, it was like that, quick visit, quick chat, quick hug and kiss, trying not to scare him. Trying to sound as if everything was going to be ok, because strangely enough we both held that crazy thought.
I hadn’t been at home with Jake for a couple of nights. It was important to Sally and I, throughout this whole thing, that I spend time with him on our behalf. It was a hard choice, I never really wanted to leave her and this time, on the 9th, the feeling was even stronger than normal. She was out of it, it was hard for her to communicate with people when I wasn’t there, when familiar faces weren’t there and even though there were many familiar faces on Miller 5, there were many more that would confuse anyone. I didn’t want to leave but I didn’t want Jake to spend another night without one of us and spending the nights in the Hospital wasn’t what we wanted at this point. We talked. She didn’t want me to go but also thought it was important to be with Jake at our home.
During the last year when I would leave her to spend time with Jake, we both knew it was “we” spending time with him. I think this is what made such difficult decisions easier, and I think it worked both ways, I think she carried me with her on the nights she had to spend alone, she carried us both with her, just as I carried her with me when I left to spend time with our son. It was always “we” when it came to him.
And so, I prepared to leave and we embraced, and as was always the case in this last year, our leavings took on special meanings. They were deep, profound, they were spent as if they might be the last and that is quite a thing and it’s a thing we didn’t do otherwise and it’s a thing I don’t think many people do; leave someone as if it might be the last time you see them. That’s how we did it now, and I hugged her and she me and we told each other we loved each other, and I turned as I went out the door, my heart breaking, her heart breaking with no hope for any other decision…
The plan was to go home, spend time with Jake, get him off to school in the morning and come in. And that’s what I did, but I was also tired and the body and mind’s relief at a brief respite is real, and I went back to sleep after getting him out the door.
The last message I have from Sally in our private chat:
She had never expressed this way before. I was frantic. After I sent my first message I fell back to sleep and when I got her message, I was out of bed and in the car.
When I arrived, things had changed. I knew it from her message but when I saw her and we embraced, I knew things had gotten worse, quickly. The infection or whatever it was it had gotten worse overnight. I found out later, like hours later, that she’d worked her way out of bed and was found sitting on the floor by a doctor and had to be helped back into bed. She never told me this, the nurses never told me, it was the doctor that told me, and he told me in the context of a whole bunch of other information and opinion related to her downturn and what they thought was going on.
One thing about end of life, or at least Sally’s end of life, was that once it started in earnest, it went fast. Very fast. I believe that the night of the 9th something happened, she saw, something new…I think she was trying to get away from it. And, for another day or two, she did.
The decision had been made during the overnight to put her on supplemental Oxygen. This is something that she seldom needed over the last year. Her levels were always pretty strong, and her heart was always strong, but something happened that night and her levels crashed. When I came in and was able to get a grip on what was happening, I saw that she was on 4lpm of O2 and her heart rate was 125, resting. Not good. 4lpm was a lot of oxygen being pushed, she was wearing one of the nose inserts the least invasive kind but it was still four liters of oxygen going up her nose every minute, not comfortable but better than not being able to breath and with her heart rate so high, despite the fact that she was basically sleeping, it meant her heart was working hard to make up for other systems starting to fail or trying to keep up with whatever was going on. Her heart. Her heart was always strong. Her heart was always strong.
Edited 4/6/24
I scroll pixelated memories.
There is nothing
on the day she died
and I feel the want
rising, bursting, soaking me
rising, bursting, soaking me
up from my deepest parts
the want.I want.
There is nothing
on the day she died.There is nothing
where she should be.Today is a bleak day.
The kind of day
that she would not want
to be alone.
A day to appreciate
human warmth
and heart
and breath
and touch
and softness
and kisses,and two cups
of tea,
one for you
and one for me.Edited 4/6/24