I finally get to use this blog, and a few other resources, to their fullest. It has been a long slog to get here. Not even trying to explain from the beginning. You’ll get it. If you’re fam, fan, starblood, friend or loose acquaintance from the H.P. Lovecraft Film Festival, or some Convention down the years, or from way back when I was just writing and writing and not publishing anywhere, and doing the Open Mics and…well, evolving… If you know me, you kind of know where I’m at and what it took. I’ll fill in the gaps. There’s useful WriterStuff coming, don’t worry. Just warming up the boards, the lightning rig, the house P.A. system. Doing my Idiot Checks and about to take my own mic.
I have Stage-One Multiple Sclerosis. And it is a gift. Because I finally have a name for it. I have experienced symptoms since I was eleven. I have been trying to get Disability since 2011, when those symptoms got rather severe following a complicated surgery to remove a deformity in my lung. I knew there was Something Else. M.S. people say that often. Something Else, hiding. But when I could name her, my Disease and I began to learn to communicate with each other. We’re both stuck here, was my take, so we might as well make like Jackie Chan and Chris Tucker in ‘Rush Hour’ and figure out some sort of common approach, no matter how goofy.
I call her Little Stranger. Took the name from NAKED LUNCH, when he personified his addiction. A Disease is a Disease. Mine’s not necessarily terminal, but she is as mouthy and queeny as William Burroughs on the worst day of his life, and I have learned when to tread lightly. How to put her to sleep…and put her to work.
When she woke up all the way, I was bouncing drunks at a big local Metal club. I loved my work, had over a decade in the field, and treated the nice fans to an experience beyond the ordinary. I had layers of friends through that club, and my crew were like family to me.
Then I woke up with one eye pointing the wrong way, and feeling like I just got beaten with a tire-iron. I went to work two nights before a dear friend who was helping me with the spoken word event I MC here in town told me to go to the hospital RIGHT NOW.
My OHP had lapsed. They thought it was a brain tumor. My family were freaking. My crew, my roommate, my writer peeps, likewise. And yet. And yet.
Something snapped in me, that first day. Something rose up righteous and stayed on the phone with the State for an hour, and chewed ass up and down the line. And then the Opthalmologist, who wanted to bulldog me into a procedure I couldn’t pay for. I got them to send me to someone who would TALK.
That someone is a Neurologist who is on the board of the National M.S. Society, and she turned white as a sheet. There was an MRI same-day. Because she heard the particular timbre of my bitching, and she knew what she saw.
And we slapped it down. Other parts grew more hellish. There is a whole tale, before and after and behind. As I will elucidate.
Because of one moment of change. When I was gray and I couldn’t walk and I had to get up and make all those calls. I went to the sink in my room to splash cold water on my face…
And I saw her. I saw my Disease, baffled and mighty and saurian, newly alive and just wanting to help. I saw her come to the fore, and take my hands. When I had no idea what was going to become of me or what to do… Little Stranger was driving the bus.
Those who know me, and knew me before… Yeah. I talked the nurses out of a notebook and I wrote until I had a spasm. It’s a superhero novel now, after the style of LUKE CAGE and JESSICA JONES…and the whole M.C. U. And D.C’s HITMAN. And RASHOMON and YOJIMBO and the dear old 47 Samurai. Working on the sequel. It’s called I AM LESION.
That novel, and this disease, wrenched me out of a horrible half-life of misunderstandings and bad blood and old ghosts with big guns. It had to get a lot worse before it got a lot better. It’s gotten the best it has ever been now, and though I have one person to thank profusely first and many people to thank profusely all over the place….
My fight. Mine. I had to learn to do most of this solo. Many reasons. Again… just switching the blog back on.
Actually got real writerstuff to talk about soon, as mentioned. Dark Regions’ TALES FROM THE ARKHAM ASYLUM drops soon, featuring a horrible recurring nightmare of mine named after an old shit-kicking George Jones/Gene Pitney tune called “And My Shoes Keep Walking Back To You.”
I am about to usher in the sixth year of The Hour That Stretches, a for-the-love-of-the-game Spoken Word happening in the spirit of the old Cafe Lena reads. The first and second volumes in my magnum opus series THERE WAS A CROOKED MAN soon go into Editing. All this and more besides. I have been inspired to keep record of these things again. And I will. Not going ANYWHERE. Not this time.
