You ask me to be strong again, been waiting out here for a while

My life right now is small, and dark, and quiet, and sad.

We've got Jay under hospice care, as the NIH treatment did not work. He is so weak that he sleeps almost all the time, and barely eats, and barely speaks, and gets exhausted from a simple conversation.

My heart is breaking.

Sadder still is the fact that his mind is sharp under all the fatigue and drugs and whatever else is going on in his body.  He reminds me of things I've forgotten, makes connections I would never have seen, just as if everything were normal.

Except that his voice is strained and small.

His voice was never meant to be small. It was meant to reverberate off the walls of the world, to be heard forever at loud, joyous volume.

Yet here we are.

The curtains are drawn in the house, in deference both to his antibiotic-driven UV sensitivity and to how easily he gets overwhelmed by light and motion.  We speak in soft voices, so as not to overwhelm him with our presence.  It's mostly me and him, with visitors usually meaning a respite break for me or a hospice care visit.

I am naturally focusing on this day, this moment, what needs to be done now. Luckily I have others focusing on what comes next, what else needs to be done.  I'm consumed by the rounds of sleep and water and bathroom breaks and pills and what little liquid nutrition we can get into him.

My heart breaks a little more every day, but honestly I'm in a better mental state now that we know what we're dealing with. I am very good at ambiguity, but the ambiguity of his treatment situation was driving me around the bend. Now we know what we're up against, and I can work with that.

Even though the ending is just that - a permanent ending.

I keep playing that nasty game of "one year ago", remembering what our lives were like a year ago, two years ago.  Remembering Jay at his most vital, in love with life.

And here we are.

There's indecision when you know you ain't got nothing left

There's so much going on right now, and my emotional landscape is a bit of a rat's nest, but there's one thing that I keep coming back to, so I want to talk about it here.

(Jay, if you're reading this, please stop here. The rest of this post will be too triggery for you.  Love you, sweetie.)

Since Jay went through the NIH treatment in March, his relationship with food has been supremely fucked. It's been up and down, and good and bad, but mostly down and mostly bad, and right now, it's pretty much non-existent.

I suppose that's to be expected, given what they did to him at NIH and given how much chemo his body has been through (over 1,600 hours of intravenous, which doesn't count the months of pills after the IV stuff was over with).

What has surprised me is how this has completely fucked up my relationship with food.

I worked really hard, starting in 2006, to fix my relationship with food. I went from being addicted to sweet things and white flour things to crafting a healthy relationship between body and food. I knew the things that were good for me, and ate them with gusto. I knew the things that were bad for me, and avoided them with absolutely no angst.

But now, that's all broken. I'm not completely off my recovery program, but it's a fragmented mess.  I have trouble eating with other people because so much of my meal time with Jay in Maryland was spent waiting for him to throw up. I have to eat hurriedly, either because I've left Jay at home alone while I'm eating, and that doesn't feel safe, or because I'm eating in the kitchen or the basement while he sleeps in the living room, and I can't let a single sound or smell reach him, or it could trigger a retching or vomiting session. Forget trying to cook anything in the house - it's impossible.

My conditioning around eating is just as deep as his, it just goes in a different direction. There's furtiveness, and embarrassment, and shame.

Whether or not we finally find a process to get Jay's relationship with food back to something like normal, I've got to find a way back myself.