~Mysticnight

I'm waiting on a callback from my Neurodude. I don't even know why I called him, really. I'm not doing well, but there's so much going on that I don't even know what to mention. I guess that breathing problems, throat problems, blood pressure problems, heart problems, muscle spasms, shaking, and PAIN are a bit much to attempt to explain in detail. They always want to know details. OUCH is never enough.

It's a tricky situation. Legally, and by choice, I'm DNR. So, I've already told them I don't want them attempting to save me. I'm supposed to be "Comfort Care Only - DNR" though... and I'm lacking on the comfort here. I can't even sleep for more than about an hour, when I can fall asleep at all, without waking up from one symptom or another.

It's scary. I'm sort of scared to talk about it. It's all so dreadfully dramatic. I'd pull out a violin and make fun of myself... but I really am sort of scared. Too, maybe it will pass. Maybe it'll get better. Shoot, for all I know, I'll be going through this for another 30 years. Stranger things have happened, in my life. Doesn't feel that way though... whatever this disease is doing, it's doing it very aggressively right now.

I remember reading posts by my friend, Terri (aka "Mysticnight"). Terri was dying from Breast Cancer. I remember it feeling so odd to me... knowing that her words would, one day soon, be the words of someone who had died... that her words made her alive to me, as our friendship existed online, and that even though she'd be dead, the words would still be there.

I don't get that reaction from reading books, or words online written by someone who has passed. It was just in the process... of knowing that the words I was reading, written by someone alive, would soon be just the echoes of that person.

When I write, lately, in the back of my mind is the thought of how this must feel to people reading it... of how it felt to me when it was happening with Terri. I remember how odd it felt to me, when I read something cheerful she wrote. When I met her, offline, about a year before she died, it became a lot more real to me. I had seen Terri through the disguise of a screen. I didn't know her reality.

After I met her, her posts read differently to me. I better understood that what I read was only a few minutes of Terri. It was Terri at her best. It was Terri when she could actually endure sitting in front of her screen long enough to type something.

I still think about her, all the time. This whole disease process just puts another angle on it. It enables me to see her in, yet another, whole new light.