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BOTH AND UP DOWN FLAILING LOST RESTING WONDERING STUCK WAITING

BOTH AND UP DOWN FLAILING LOST RESTING WONDERING STUCK WAITING August 5, 2021

How am I?

Well, the title says it all.

My brain, my nerves, my body feel flayed and they have been, so I’m ill at ease with everything, most especially, myself. It is hard to be still. There is a real desire to “do” something, to somehow stamp the day…I read a book, I took a walk, I wrote a thank you…because the minutes in between those accomplishments seem to hang and yawn in the void. The lesson of all of this, I’ve managed to avoid myself by being busy and applauded myself for the tasks done.

Friends text me…”Are you okay?” and “Are you resting?” and I have to work with the legitimate answer which is, never has resting felt so restless.

I know it is the pain talking. I feel frayed at all the edges and am counting the moments until these drains are behind me and yet fearful of what remains that we’re going to have to face. My children likewise seem to have held their collective breath, like all of us are waiting for the cancer chapter of my life to be over before anything else can begin, while I am champing at the bit, thinking, begin anything else, something else, finish things because this cancer will take a while to finish. Everything not done, feels like a haunt.

When I lay down, it is to notice I am tired but not sleepy. When I stand, it is to discover I ache and yet am restless to move. My brain echoes my body, feeling like there are a thousand messages I’m not getting, because there are.

Next week, I go to the surgeon and we learn much of the everything we don’t yet fully know, and hopefully we get rid of the drains. I am longing to plunge into a pool, to swim a whole lap. I’m not sure how I’ll feel when I actually get to, but the idea of it, the joy and freeness it conveys, is something I want. I also want to bang on my drum set with abandon –motions I can’t guarantee I can do at the moment.


At eight, the week after the surgeon removed my first tracheostomy, the doctors told me to restrict my activity. As an eight year old, I remember that summer day four after we returned home (not yet off restricted rest). The bike beckoned. The air felt Texas summer perfect. I raced up and down my street from one end to the other and it felt like flying. I’d never biked so fast, so easily before in my life. Racing back and forth, my joy cut short when Mom caught me disobeying Doctors’ orders –I popped three stitches and had a larger scar because of it.

I’m wanting that moment after this surgery. It won’t happen until after the drains are removed, hormone treatment and whatever else we need, but I want that moment stolen in the future from the memory of the past, when the ordinary is infused with a health that wasn’t there before and I know.

In the meantime, I’m just a fidgety mess trying to figure out how to be still, how to not be anxious about many things.

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