Friday, November 02, 2018


When I was in the MRI machine, I started getting cold.  My skin was turning icy.   I was growing miserable and asked for a blanket when there was a break in the scanning.  The MRI safety officer felt my arm, which was stuck to the side of the machine, and said that it was warm.  With chills traveling from head to toe, I tried to find the words to tell her to touch the skin on the top of my arm or my leg or any place else.  Instead, I merely said I was cold and asked for a blanket.  She insisted that I was in danger of overheating and refused the blanket.

I felt bullied.
And dismissed.
And cold.

When she started to pull me out of the machine, the safety officer kept commenting on my face.  I was flushing and she was marveling at just how red my skin was.  I was flushing.  My face was on fire, but I was so cold that it was difficult to concentrate on what she was saying.  I just wanted to get back to my clothes, which included a heavy sweater.

My face is on fire at the moment.
Right now, as I type.
It has been for hours.

For a couple of months, my ears have been flushing, not my face.  I was enjoying the fact that my face was more like the face I am used to seeing in the mirror, even if it is overly large.  However, for a while now, I am back to looking and feeling the freak, with a face others comment on in wonder.

Yesterday, I touched my cheek for some reason.  I do not touch myself much.  I do not like touch from others, knowing it will trigger me.  I do not like my own touch.  But when I touched my cheek, I was startled.  It doesn't even feel like skin.

My face, where it flushes the most, is rough, like sandpaper.  It is rough and tight and, usually, burning hot.  The heat is damaging my skin.  I knew that, because I have broken blood vessels on my face now, tiny dark red wiggly lines.  But now I also have skin that no amount of lotion will soften.

I cannot tell you why this has me so very distraught, but it does.  I've been trembling and despairing for hours.  I have been shaking and wracked with sobs that break out unexpectedly.  Tears are welling in my normally desert eyes.

More loss.
And still more.

I ache within my very being over all that I am losing and have already loss.  I feel so very isolated and alone with that loss, especially hearing that I am still this, that, or the other.  I am still smart and still capable and still ... and yet I am not.  I know that I am not.  I am living inside this body, this mind.  I know what I struggle to hide. I know what I cannot remember.  I know what confuses me.  I know how often I am lost.  I know.

Amos is snoring like a drunken sailor next to me.  He's rolled over and over until he's no longer curled up against me.  Instead, his feet are tucked behind the small of my back and I feel them move as he frolics in his dreams.

I wish he were awake and curled up in my lap.
I wish I were not alone.
I wish someone were holding my hand.

The sandpaper skin on my face is such a small thing in comparison to all the things breaking in my body.  And yet is it not.  I think that it represents the whole of what is happening to me.  A whole no one but me sees.  A whole I long for others to see.

And a loss that is devastating to me.

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