Blog post zero: a users guide

Please note: this blog contains explicit language...probably a lot of it.

I think it might be easier for everyone if I came with a user’s manual. 

In the space where other people shake hands, I would just offer a pamphlet and say, "I’ll wait."

Because there’s not much I can tell you about myself that does not need an explanation to accompany it. 

Name? "Yeah, about that…"

Gender? "Well, ya see…"

Occupation? "Fuck, how much time do you have?" 

(Oh, BTW: cursing. You can expect a lot of that here. Please be sure and don’t let me know if that is a problem for you. Thanks.)

Oh well. I suppose most people would just toss it aside with a “TLDR.” 

It’s true. I am absolutely too long to read. But here’s that TLDR anyway: I have (several) chronic illnesses and I make stuff. This is about that. Not just how to navigate the extra challenges that come with those pesky cunts, (that’s right. Just gonna rip that C word bandaid off right away. I mean business when I say I curse a lot.) but also how I use the act of creation itself as medicine. Though I have to say, those in the TLDR camp probably won’t last too long here.

Here’s the longer version: 

I’ve been thinking about writing this blog for years and not just because I love the struggle of wrestling my feral thoughts into tidy rows of words, but because people keep telling me: "You should write a blog. About your life and shit." 

Now, it’s possible that these people are just hoping I will stop talking to them "about my life and shit" and go abuse some paper instead, but- 

I'm almost certain that at least one or two of them were sincere. 

So here I am. Writing about my life and shit.

I hope both of you enjoy it.

The truth is I've been "working on" this blog for years without realizing it. Mostly attempting to soothe my colicky brain so it will stop screaming so much.

Understanding Complex PTSD and the list of delectable side-dishes that come with it- depression, anxiety, fibromyalgia, ADhD, a dash of dyslexia and a heart murmur from a literal scar on my heart because God is a poet and just can’t fucking resist a good metaphor- 

well, it’s a lot to unpack.

I’m up to my knees in bubble wrap and there’s still all kinds of shit in that bottomless box. 

…ADhDCPTSDGADMDDPOTSLGBTQ…

My issues have earned me almost an entire alphabet of acronyms, but I still feel utterly misread. 

But next to this box of shit, I have a chest full of medicine. 

Thank God. 

Because if I was only an alphabet of neurosis and myalgia, I probably would have checked out a long time ago. As someone with a scar thick as an earthworm stretching down my wrist, reaching for my elbow...I don't say this lightly. The body doesn't unzip easily, but I tried. 

Does that freak you out? I would say I'm sorry, but I'm not. Honesty is my only flex. I'm not a rich and famous author or artist, but the compulsive creating of things has given me more than that. It gave me my life. 

Now if you’ve made it this far, it’s possible that you’re screaming internally: "OMG! TMI!" (And maybe some other disparaging acronyms just for fun.) In which case, great! Thank you. You can go now. This isn’t for you.

Speaking of acronyms if you’re still with me, you might wonder, as my wife once put it: "How can you have so much… shit?" Now, she was asking in a kind way, but too often the questions like this are barbed with suspicion when pointed at people like me who have multiple diagnoses. It’s like there’s a limit, an attitude of "I can accept one, maybe two conditions, but beyond that, you’re just being greedy."

As if we’re out to gobble up all that delicious sympathy that comes with having a chronic condition. Seriously, it doesn’t taste as good as they seem to think. 

Somehow the saying “Lightning doesn’t strike the same place twice,” survives in a world where lightning actually picks favorite spots to hit again and again. 

Nature doesn’t equally dole out shit, because shit begets shit. That is to say the issues are all connected. A whole galaxy of neurosis spiraling out in the neurons in my brain. 

And I know I’m not uniquely cursed in this. 

I bet some of you know exactly what I’m talking about.

If so, you are the reason I’m writing this.

Because creating things and becoming intensely curious about this reality that I find myself in, gives me a different lens through which I can view the world. And when your world sometimes contracts to a point of pain so small and dense that you can't leave your bed...that is everything my friends. 

I’ve studied and made art for what feels like an absolute geological amount of time. And as I’ve improved at it (at the speed of rivers rounding the sharp edges of rocks) I’ve learned some things. Not just about art, but about healing.  

I have some formal education in these things, yes, but that is just one little wedge of learning within the round pie of study in a life that I have tried to give over entirely to making art. 

I say "tried" because I have always had to negotiate any smattering of success around pain, fatigue and despair.

And that’s the really tricky part. Because while I absolutely believe that creativity is medicine, it is also harder for us chronic illness folks to find the time and energy to be creative. 

But I’ve never given up and that is something that I’m proud of. Some days that’s the only thing that I’m proud of.

And that’s not nothing. Some days it’s the only thing I can count on. Some days I can’t count on it at all, but it still feels like the most solid thing under my feet. 

And I want you to have that too. 

But I can’t give it to you. I’m no guru.

This is not a "I’ve got my shit on lock and this is how I do it" blog. That’s not real. 

No one has all their shit on lock. No one. 

No. This is war. So far I’ve survived. If you want to know how…I promise I’ll be as honest with you as I can. 

Not just about fundamental concepts of creating art (in this context I’m defining art as any kind of creation, whether it’s creating music, writing or creating visual art. Unless it’s AI generated because AI is art theft and yes, I will die on that hill, but not today.) but also how I’ve used art as medicine and how I’ve continued making art even when my body or my brain say no. 

Some posts will be about practical ideas to keep creating, or things I’ve found that make it a little easier. Some will offer encouraging words and ideas that have helped me keep going. And some will likely fall outside of the bounds of anything we’ve talked about here and I reserve that right because there is wildness hiding in these dark hills and I’ve promised to honor those howls. 

Maybe I’m just a crazy old lady feeding birds from a park bench muttering to herself and you are free to sit down and listen. Or not.

Either way, I’ll be here, just writing love notes to the abyss, tossing them in one by one like pennies for a wish. 

I can’t tell you what I wished for, because then it won’t come true. But stick around, I have a lot of other shit to tell you. 

Love and Hisses,

K

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