Oh, Dana. When you already have a horrible debilitating headache, the last thing you need is the giant pain in the ass of our medical system. I hope it’s gone away by the time you read this.

Sarameg, I’m surprised I haven’t heard that pretty song before.

It did fortunately make a big difference overnight. Today I have the fun flush on my face side effect, but I can work with that.

Ugh Dana that sucks.

Floats are good. Flushes, at least cope-able.

That song has held different resonances over the years since the ‘90s for me.

Holds up now, for many reasons here & elsewhere.

In my email this morning was an article by the NYT how a racist instagram account tore apart a California high school.

Imagine my surprise to find it was Emmett's old high school in Albany! And a mere three years after he graduated. A very fucked up situation.

We're in a weird space. JZ is ready to go. But her body isn't. It's slow and you just have to let things happen at their own pace. She's cognitively impaired, can barely talk, is frustrated and bored and angry. She's still recognizably herself in there but her body is shutting down. But it's taking its sweet time about it.

It's hard to watch her in that space. Trying to let her sleep as much as possible and hope her body starts to let go.

I remember when Charlie was comatose and clearly ready to go. It was really hard to be in that seemingly endless space before the full letting go. Still, I was so thankful to make it home from Iceland in time to have several days to hold his hand.

Jacqueline messaged me daily that week, letting me know she loved me. She was always there for her friends.

I am so sorry for you and JZ. Sometimes bodies just want to endure. I know it is awful because she is beyond ready to move on and you don't want her to suffer. My heart is with you.

It turns out I remembered the phrase wrong - they say “our arms are not tired.”

I like “wings” better. Especially because it includes our non-huggers. 😊

Musings from the "I should be in bed" corner:

This limbo, after the courageous and rational parts of dying, can be so confusing and stressful. The anticipation of release, but not being ready to fully grieve. Often there is a surge of energy that makes it confusing in _different_ ways. There are super predictable elements, but while the passage can be filled with beauty and grace, it can simultaneously be incredibly mundane and draining.

My heart is with you all.

Before I trained in how to be with people in this chapter, while taking care of my great-aunt, I was so terrified of doing something wrong (tl;dr I totally did). I just desperately wanted to honor her and to be exactly what she needed. Along the way, I lost sight of the fact that there simply is no way to be that for anyone. We come in alone, and we go out alone, regardless of how loved and supported we are. It's like walking to the front door of a child's first day of school but not being able to see into the room. It's just not time for us to fully understand.

I was the only caregiver and literally slept less than 3 hours a day for about 3 months. My husband was certain I would die first. He sort of demanded that I finally go to bed, which was on the opposite side of the house from the care room.

He was supposed to wake me up at 6. I rose at 10 and knew instantly, after literally staring at her for months, that she was gone. It was obvious that it hadn't been long. The story I tell myself is that she was so prim that she simply didn't want me watching the hardest part. I also believe that my anxiety kept her anchored. When the doctor told us that there was nothing to be done, (and she was a nominal Christian Scientist, so nothing would have been done anyway) she said, "We are going to do this together, and it will make you stronger." Reader: It did. It genuinely changed me as a human.

I was a terrible disappointment to her in many ways, never mind why I tried to live down to that expectation, but she was right about the impact.

David, my heart breaks for you and Matilda and everyone who loves JZ, (which includes so many of us here). At a time of no real comfort, my own faith finds a tiny bit of ease in knowing that her choice to live so genuinely means that she will be a part of us for generations.

I hope so very much that Jacqueline's too-stubborn body decides to let go. The limbo must be so horrible for her.