MAGNUM OPUS:
The Downward Spiral of The Last Five Ends in Joy

When I get out of balance (physical pain + emotional blows with no relief),
I start getting scared.
My perspective gets distorted by my own pain,
And I can’t tell my friends from my enemies.
The problem is, 99% of the time,
I am my Worst Enemy.
So in addition to being in “pain all over,”
My thoughts have no place to land.
This creates a toxic imbalance in my body, resulting in
Me in an Extended Version of the Emotional and Physical Fetal Position,
As if warding off cosmic blows.
It’s not the LEAST BIT comforting, though.

I don’t even know how long these periods last some times.
It finally erupts into a Dark Place,
Both emotionally and physically.
I’ve never written about this before, but I have been diagnosed with a Neurovascular Disorder called Erythromelalgia.
It’s sometimes called “Man on Fire Disease” or “The Suicide Disease.”
And it’s earned its Title!
Sadly, it’s so exceptionally rare, you can’t find a neurologist whose even heard of it,
So there’s very little information out there. Which compounds my anxiety.
That’s the sad case with rare diseases.
With no Big Pharma backing, research dollars can’t be found.
It’s a disorder of the autonomous nervous system.
I “lost” the ability to release heat from my system about 5 years ago.
So, if I combine ambient heat with exertion (it’s extremely hot where I live),
I get heat stroke without realizing it.
Until I’ve got heat stroke.
Which keeps me indoors,
Avoiding life because of my fear of getting violently ill
Should I carry in too-many too-heavy bags of groceries from my car to my apartment.
It’s cooler in there, but it can be dark in there, and alone and scary in there.
Alone to feel shame at not being live like a “normal person,”
And not being able to regulate heat, can’t vent the shame
Without the shame surfacing as blushing fire through the skin
On too many parts of my body.
It’s very humiliating for me to write about,
But since there’s no cure or, in my case, effective treatment for Erythromelalgia,
And because I got off all anti-depressants, and pain meds and anti-anxiety only in emergency
And not for emotional coping,
You can see how my Poems and this blog have been my constant companions over the last year.
This was my last secret to write about,
Because it’s One Thing which has bested me
And nearly ruined me.
What with the limitations it imposes, I felt it made me “unworthy as a companion.”
So that took away my hopes for the happiness I hoped to one day find in the company of a partner.
Which used the be the “safe place where my thoughts would land” as a coping mechanism.
They have no idea how or why I acquired it (again, no research),
So they default to the overdose of highly neurotoxic chemo I had when I was 39 years old,
Fighting breast cancer.
But since I was given no “Why,”
I first switched to “Why Not” in an effort to “embrace the pain.”
That might work for some of you Mental Athletes, but this girl already HAD a frail state to begin!
Like: I was mentally and emotionally fried and too-feeling at the same time to handle “thought mastery!”
So, I decided to “burn the shame out of me,”
So I could at least feel safe inside my head.
I had to find a harbor for my mind or I would give up.
The only way I’ve been able to do this is through writing,
So I mean it when I say this blog has saved me life.
And I have discovered my own voice in the process!
It has been a 3000% net joyful experience for me,
Even if a painful and tearful one.
I’m re-writing a story without a pre-determined ending (see my poem, A Foregone Conclusion – or something like that! It was birthed in MUCHAS LAGRIMAS! Many tears!).
I actually believe in Miracles again.
I had totally forgotten about Miracles, having no recent or long term memory of them.
So anyway, final shame vented,
But I don’t care how anybody prices me!
My price is DOWN TO ME, and I DECIDED I’m PRICELESS.
That’s good enough for me!
So thank you, dear friends, for helping me discover my voice, discover my worth, and to re-grow my jaded belief in Miracles❣️