It’s like fingerprints of shadows all across me.

so the other bad stuff yeah, that stuff…

I have Multiple Sclerosis.  It’s like being hit with scissors in the head and someone pulling all of you out and then trying to put the pieces back together but it’s all wrong and such…and it seems like I’ve had it for 10 years now, just didn’t know it, just completely in denial over all the symptoms and everything, thinking hey all these things go away so I’m okay and then they come back, and somethings linger around….

like being haunted by some poltergiest that’s taking over my body piece by piece and changing me, I’m becoming patchwork someone else, and I mean there is no way for me to not feel broken any more, because that’s what I am, I’m broken now. I know, I need to be positive and fight these fucking ghosts, but I can’t lie to myself either, it’s not right, you know? I have to deal with what I have. Doesn’t mean I have to let these spirits steamroll me and make me into some doll with strings tied up into someone else’s hands making me dance or whatever.

So. Still. Yes. Still.

And there is a fear in a long dark tunnel down at the end and that’s the posibility of what the disease will bring, how it will change and destroy me or not or maybe because it’s so random where the ghost fingers lay down and change me, cutting out pieces of me and replacing them with old broken doll parts masquerading as real parts. It can be all sorts of nasty horrifying things or nothing at all, or everything at all, but I have to prepared, I need to be prepared….

So ten years of this and without medication or treatment because of denial and I’m walking still and everything. That’s good. That’s hopeful. That means that somehow maybe I can be a person who isn’t always on the edge of surviving, of watching for needles and threads coming into my spine and my skull and stitching through and leaving scars and changing me. It’s like fingerprints of shadows all across me.

but wholeness I guess is a relative thing cause somehow we’re all broken in some ways and I just going on and on and on, even as I drop puzzle pieces of myself along the way…towards the cave towards the light…crawling upside down to the void….

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5 thoughts on “It’s like fingerprints of shadows all across me.

  1. Today, at age 33, I bought my first cane, because without it, due to chronic left-side pain, I can only walk very slowly, and am off-balance, risking a fall which, due to being on blood thinners for life, means an instant ER visit or death from brain bleed before I get there.

    This week I meet my full-time caregiver. And your shit is still way worse than mine.

    Yet you’re not only “walking still and everything” — an interesting phrase, if you break it down, think about it — you’re writing. Speaking. Connecting. Alive. BAM NEW LIFE! It’s a hell of a thing, as I’m finding out right now too. You always know. Those people. Out there. Who one day become — themselves, and something else they always thought belonged to those people, out there, the ones we worry for and clutch our walls in fear of.

    And then the campfire fades from view, and you are alone with the dirt and the night.

    I have no point. What is the point of points? Only: signal received. Humanity registered. Temporal anomaly spent at your side.

  2. I’m 35 myself and everything and it feels young to have your body rebel and change against you, doesn’t it?

    I risk falling as well. Balance issues, a lot, and dizziness, and vertigo are all part and parcel of what’s happening to me. Chronic pain though, that’s the worst though. I can’t imagine that. I have what they call the MS Hug which is uncomfortable as all get out, but not painful.

    Man hang in there, hang on, I know I am but it’s not easy. Fuck man, I guess life is never easy. But I’m glad you left this comment, really glad. The loneliness can be the hard part, and you and another friend of mine are all going through some tough shit that’s similar, and talking about it back and forth it makes that loneliness less like a land of shadows and more like sitting down and such and having a beer with friends and just bitching about the stuff that needs to be bitched about

  3. Good luck, mate. I’ve recently been doing some tests to figure if I have a certain something (Cushings disease), and it is incredibly depressing to think that your body is fighting you.

    • You know, in a sense there is a bit of universal comedy going on when writers of weird fiction and some body horror have their bodies rebel against them…

      Good luck on the tests, and if you need an ear to just bitch about it, I have one

  4. Luck from me also, as a fellow writer living with chronic pain. I was diagnosed with fibromyalgia several years ago, and while it’s good to put a name to my long-existing problems, the pain still sucks. Hang in there.

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