It is hard to leave my skin, so much has it melted into me. All I do to keep it from rotting, or peeling away in strips, I am trapped within these eyes. For others, it is difficult to see me. As for me, what are another few lesions, right, or a seizure, or some aspect of brain degeneration, a slurring? What does it matter to me, who can’t imagine what it would be like to love me. Who can’t remember the world where I walked strong?
Only Linda now is not frightened to touch me, to look me in the eyes, to not find reasons to start triage. Only Linda with the open heart, centered.
In the darkness of 4:00 a.m.
“This isn’t just something in my head is it?”
Linda’s voice is soft, cradling, “No.”
“It isn’t something chronic, something I just live with, is it?”
“No.”
We both wait in the silence while I close my eyes. Some things can’t be said in daylight.
“I’m going to die, aren’t I?”
Her voice is soft but it fills my head, fills the room. “Yeah.”
It seems so much that this life in a hospital bed is a movie set, is an odd dream. This couldn’t be real. The ice pack settles and I realize that tears are running down the sides of my face, around my ears to fall to the pillow. “Yeah.”
From the darkness a hand to hold.
People accept that Triage occurs, they don’t think, they don’t want to think of the person lying on a cart, neck muscles bulging to suck down another breath, trying to swallow but a mouth to dry, the people passing by in a fever haze. They just try to stay conscious, to breathe, not knowing that a red sticker sits on the outside of their chart.
I had another blog post I was going to write, but I couldn’t do it today, too fatigue. How much fatigue? Imagine taking your day, and being awake for 1/3rd of it. And then you only have one tenth of the energy you normally have. And then you only have a tenth of that energy. That’s right, 1/100th the energy, and then you cut that in half. Do you go during break at work for donuts? Now imagine that being something that takes two weeks planning and recovery for 2-4 days.
So I had another blog, about Sakura-con, something light, a little fun. I got the pictures done and loaded into blogger. Then part of my illness struck, and after ‘now’ it was almost two hours later. This simply IS. It is what ‘living in the now if you want to live’ means. This is what scares people.
Tomorrow will be a blog about the future, the hopeful, not the gritty reality of the breath you take to steady yourself before going into a hospital room to see someone.
Last night after being helped to bed. I was drooling a bit, and slurry.
“What if I walked away or destroyed all that I possessed?” I asked Linda, “then, then would I be get to be insane instead of dying?”
How does she look at me so calm, how is it her voice doesn’t change but a tinge of sorrow? “No.”
“No, I knew that. I just had to….” I take that breath to steady myself, “I just….that there was something.”
I drink the bitter cup, a sip at a time.
In the end, still red chart marked, if found breathing, they will call it a ‘miracle’ and try, knowing it is too late. Not knowing of the eternity within and between breaths that only an iron will could have hung on through. That is what people don’t want to see. Because it hurts to watch. They get the choice of turning away, a luxury which, when their turn comes, will be chosen by others also.
They say that because there are no nerves inside the brain, you can’t feel the damage but that’s a lie. But a brain with damage is something, a breath of agony is still a breath.
Triage. I am lucky to have a hand to hold.
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