November 17, 2020

Deer friends...

I lay in bed last night, waiting for sleep.
And I began to cry. 
I feel so defeated. Defeated. 

More tears flowed as I cataloged my losses.
Mainly friends who have gone missing. 
Though I'm really the one who went missing.

Then I counted the few friends who I still communicate with. 
I really am not able to do more. 
Neurological fatigue simply doesn't allow it.

This morning, I awoke to tears.
I pushed my weary body out of bed.
I opened the blinds.

A lone deer was in the back yard.
Meandering. 
Sniffing the ground. 
She came almost, all the way, up to the deck.
My heart smiled.

The other night, three doe and two fawns were laying in the back yard.
They bring me comfort.

I'm still dealing with shingles.
The boils are gone, along with the intense pain.
But the fatigue continues, multiplying my normal fatigue.
And my head, inner ear, and jaw still hurt. 
On my right side.
Low level pain. 
And they itch.
And a sore appeared in my mouth.
On my top gum, right side.
Another shingles gift, I reckon.

My next epidural is on November 30th.
It will be number 32. 

I wonder how long Job was sick?


Bitch on a bike? No... ~ Space Pirate? Yes...

I originally posted the piece below on 11/16, in the morning. By evening, I was feeling self-conscious about it, a bit too vulnerable. So, I put it in draft. I've been known to do that. I also wanted to edit it. I've been know to do that too, a lot. 

I wrote it on 11/15.

~*~

11/15/20

Can I make sense of these journal entries? Sense enough to put together something to maybe post on my blog? Something to read aloud to my fellow writers in the phone/Zoom writing workshop? I do the call-in-phone option. Someone would have to drag me resisting and grunting to do Zoom. 

I want to fall in love with writing again. It has become laborious to put together pieces for publishing. Anymore, I only "publish" on my blog and in the workshops. My blog gets very few readers. It used to get more, but in February, 2015, I disabled the search engine function.  

I thought this morning, Perhaps, perhaps, perhaps writing has become laborious because of the amount of detail that goes into my selfcare each day. Maybe I can't paint a picture with words because my detail allotment is drained. Maybe the workshops will help me. Help me to write again, beyond journaling. But maybe journaling is all I can do. Write in less detail because I already know the details.

I used to love words. All kinds of words. And etymologies. And making up words. I don't know the names of many birds or plants or flowers. So I tell myself, If  I were to name this flower, I'd name it Starburst. My made-up name is just as legitimate as whomever made up the name that stuck.

I guess I still love words; I just play with them less. 

When I was a Bible believer, I'd spend hours on word studies. Using a concordance and lexicon. Big, heavy, important books. Before the days of internet. 

The internet. A net that catches things and then dumps them onto a screen. Mostly I'm thankful for the internet, and mostly I'm not. 

Writing used to be my passion, my escape into reality. Sometimes I'd feel guilty because I spent so much time journaling. And it saved my soul, maybe even my family. I have over 20 journals. Why do I keep them when those deemed more wise than I have advised me to toss them or burn them because they put off some sort of negative energy as they sit on a shelf or recline in a box. And that negative energy keeps me stuck. 

I don't fully embrace that belief, though it kinda might be true. But for now, I keep my journals. 

The movie, The Martian. The scene where Mark Watney passes out as he hits 12 Gs after being launched from Mars in the stripped-down MAV. MAV stands for "Mars ascent vehicle." Right before he passes out, he's swimmy. His head rocks from side to side, his eyes roll back, and then he goes under.

That swimmy moment is how I feel on my bad days, during my roughest weeks. Like I'm going to collapse. This has been a regular occurrence for the past eight years. At first it was alarming. Now it's part of my normal. In my worst years, before getting my toxic heavy-metal levels down,  I'd also feel like all my organs were going to fail.

But my organs did not fail. 
And I've never collapsed. 

One of my most difficult symptoms is cognitive fatigue. Most people call it "brain fog;" I call it "brain mud," because it's so thick. The muddiness takes turns with "scrambled eggs," a different brain feeling -- blobs of separated, scrambled clumps lodge around my brain. 

And then there is the "vortex" -- like a dark tornado but it goes down instead of up -- and I'm caught in it as it tries to suck me into its void. I kind of relax into it because I know fighting it just makes it harder to endure. It's like the scene in the Wizard of Oz where Miss Almira Gulch, the mean bike lady who becomes the wicked witch, rides her bike and then her broom round and round while she's caught inside the tornado. 

I don't want to be the wicked-witch or the bitch-on-a-bike. 

But I like the idea of being Mark Watney, Space Pirate.