as small as a world and as large as alone, On my way to physical therapy, feeling cattish and...

1:05pm June 23, 2014

On my way to physical therapy, feeling cattish and happy. It’s sunny out but it’s not overly hot, and I’m just… happy. Happy to be alive, happy to be moving around on my own, happy that I was able to just walk upstairs and grab some meds and come back down without waiting for an elevator, happy about all kinds of things.

Death has something to do with this, weirdly enough. Death always reminds me to be happy about all the beautiful things going on right now, because you never know when it’ll be gone.

We don’t know how close my dad is to death now. He was diagnosed with pneumonia, which explains why he was doing so badly. They’re saying with chemo there’s a chance he could live up to six months or even a year. Which sounds too good to be true, but I badly want it to be true. As long as he wants it to be true, of course: It may be that chemo is too unpleasant and he has to make some choices about that. But he’s barely started chemo, barely gotten his first PICC line, so it’s too early to even think about that.

Now that I understand fire, I feel the fire of the sun and I love it. I love the way fire is life, the way fire flows through me, the way fire makes me feel alive.

I’m making bracelets to remind me of each of the elements. My fire bracelet is red with yellow and red beads and a charm with flames on it.

And today I feel like fire. I don’t feel like fire the way people think of fire. I don’t feel angry. I feel full of life, I feel passionate about life, I feel so very alive.

And I feel this way from being close to death. Being close to death can make you feel life all the more intensely when you feel it.

A friend tells me that last year, after I got the feeding tube, they expected to feel me getting more robust, and I didn’t. I just kept fading away, more and more. They didn’t want to think what it meant, so they didn’t.

Then I got on dexamethasone and I stopped fading.

Dexamethasone is so strange. I don’t take that much of it. It’s just this tiny little syringe full of a tiny amount of liquid. But that tiny amount of liquid is the difference between being on my deathbed, and running up four flights of stairs without getting out of breath. It was very hard to feel my own fire without dexamethasone. Now I feel it all the time. I feel whole – not medically, but… elementally, or something. Like earth, air, water, and fire are all working together the way they should, for the first time in my life.

Right now, dexamethasone is taking getting used to, though.

My old stress response was to become stressed out, and then become incredibly weak. My heart would flutter, I’d go limp, I’d be barely able to open my eyes or think, and the stress, the feeling of stress was gone. My galvanic skin response was near zero no matter what anyone did to stress me out (in huge contrast to an unusually high galvanic skin response before my health crash). Then I wouldn’t be able to breathe on my own, and I’d need a bipap and oxygen. And it went downhill from there.

Now that I stress dose – double the dose of dexamethasone in response to physically or emotionally stressful events – I can feel a full stress response. The rage, the pain, the anxiety, everything. I can’t shut down. I have to deal with it. It’s a whole nother experience from having stress just try to kill me every time.

But right now, all I feel is aliveness, so very much aliveness and fire and the sun and it’s beautiful and amazing to be alive.