So I started this painting the morning I learned that a friend, a supernova-sized, bright, shining star, had died. I had unplugged from social media for months and had no idea. Scrolling through her Instagram feed backwards, catching up, as I got closer I could feel it. Then when I got to that post “oh NO you fucking didn’t! “came out of my mouth.
Then, immediately and in the same moment, I was both jealous and filled with peace.
Then I began unstoppable bawling, hyperventilating, got in my car and drove through the mountains. I drove and cried and drove and cried and questioned everything. Every. Fucking. Thing.
The next morning. Without thought or words I picked up my brush and began painting. As angry as I was. As heartbroken as I was. The pain. The sadness. The questioning of everything I thought I knew and believed in. . . I painted.
I painted her free from pain. I painted her with ribs made of feathers, a fern frond for a backbone, and a crown of stars.
Unchained from the earth and all its human-ness.
What I was jealous of, what I envied, wasn’t the actual death or the dying. What my heart ached for, was peace.
No more pain.
No more tests.
No more sickness.
The painting sat for months and months and months, as I was going through my own shit. Drowning in my humanness. Gasping with this earthly body, wishing to breathe the same air that surrounds the stars and breezes around the moon.
The painting shifted.
Here. On this earth. In this body. This painting is my prayer for Sacred Mercy.
You see, I’ve been searching for something. Some big reason, some validation for what is happening to my body.
I feel like I’m in medical school . . . all the scholarly articles and abstracts I’ve read, searching for the magic answer.
I found it, without a drum roll or a big whoop Dee Doo, and it's certainly not magic.
It’s both very simple and mind blowingly complex. The simple answer is I have hereditary hemachromatosis, a genetic blood disorder. Then it just gets all sorts of fucked up from there. When I was diagnosed 28 months ago I read all about it. I devoured everything I could get my hands on, and my brain (which has excellent coping skills), boiled it down to this
“Untreated, it will kill you. Caught early and treated, you will recover and live a normal healthy life."
I glazed over the “caught early “part. Now. 28 months later, my blood levels are now “normal" . . . yet, I’m far from “ living a normal healthy life".
I’ve had on my med student outfit for so fucking long. Make sense, right? If all my levels are "normal", but I’m still this sick, there must be something else fucking wrong with me.
And there is. Plenty.
I have a whole slew of specialists helping me take inventory of all my broken parts. My primary care doctor, gynecologist, gastroenterologist, oncologist, physical medicine doctor, physical therapist, neurologist, urologist, and my rheumatologist.
I’ve had so many blood tests, CAT scans, MRIs, and an EEG. I’ve averaged two doctor appointments and or scans, a week, in the last month.
I’ve gone back, with new eyes and been researching hemachromatosis and what I’m finding breaks my heart and takes me right back to the key point., that I so optimistically glazed over, 28 months ago “if it’s caught early".
At this point, with all these doctors and tests and all the things in my body that are completely fucked up, here’s where I’m at. Simple and fucking complex. My blood disease was not caught early.
I’ve done the treatment and my levels are now normal. 4 & 1/2 gallons of blood have been drained out of this body. And I will have to continue treatment for the rest of my life. That’s the simple part of this equation.
The complex and fucked up part is that because it wasn’t caught early, the damage was already done, even before I was diagnosed.
The damage to my body is done and can’t be undone.
Part of me wants to keep researching & reading & figuring out exactly what the broken pieces are & the medical processes of how they got broken.
But I'm tired. I am so. fucking. tired.
Another part of me, the part that created this painting, is exhausted from the research & the testing & the scanning & the medical literature & the doctors appointments . . .
That part of me, aches for it to stop.
"I know you're tired of fighting.
Your bones are worn from endless battle.
Loosen your grip on that burdensome sword, my love.
Unclench your fists.
Rest your weary bones.
It is time for mercy & peace,
you beautiful soul."
I've been searching, so hard, for "the answer". And what I'm slowly starting to realize, & having a bit of a hard time accepting, is that, there is no "answer." No magic bullet. No way to "fix it."
So, for now, I try, with deep, deep breaths, to rest & allow myself Sacred Mercy.
From the bottom of my heart, I want to whisper ~thank you~ for your love & support. I often feel so very alone, but your words & encouragement mean the world to me & help me feel a little less alone & a wee bit more human.
I love you.