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In 2019 I found out what’s been wrong with me for 13 years. The Mystery Illness, the thing I knew was there but couldn’t prove or name.

At some point, quite possibly when my son was born, I aquired a tear in my spinal dura. It leaked for so long that it became fused with a spinal vein. For years and years, I was dumping spinal fluid into that vein, keeping my brain and nervous system in a constant state of starvation.

My thoughts & feelings toward the medical community will be a whole other series of posts, something to explore if and when I am finally on the other side of this illness. Unfortunately, receiving a diagnosis was only one part of the journey. Right now, I am still fighting to FIX it. I have had multiple procedures including two surgeries–one in North Carolina and one in Los Angeles. Despite this, my most recent imaging shows that I am in fact STILL LEAKING. Most likely because (although I have not officially got the say-so from the medical community, I am de facto quite sure) I have a very fragile spinal dura, on account of my polycystic kidney disease, which–I have since learned–is a disease of the connective tissue.

My last surgery restored much of the energy and functionality that i’ve lost over the last year and a half (I no longer have to walk with a cane, amd I can drive, read, type, and carry on a conversation), However, I’m still in extreme amounts of pain. It appears I may also have a degenerative spine condition.

I am in the process of filing for disability. I do not run workshops or get out to literary events in my local community. My online magazine is on hiatus, and i haven’t written creatively in months. I am perpetually in a state of waiting for results of a test or for someone to get back to me for something. This week, the wait is for a new MRI of my spine so that the surgeon in Califoria and his team can determine if one of my previously existing leaks (yes, actually there were two) appears to be active. There’s a lot riding on Yes or No. Or maybe not. IDK. We have to take these things one day at a time.

In the interim, I am doing my best to build up my strength and to process my grief. In the midst of what I can only describe as a major body / medical trauma, I lost my Mom–and I lost her in a way that fucking ripped my guts out. I was absolutely shredded. And then, after several months of poor recovery and trying to relearn my relationship with my father, who is suffering his own body horror and grief, I found out we’re about to lose my one surviving brother.

Although we had been estranged for many years before Mom’s death, my brother is one of the most precious people on this earth to me. I was closer to him than I ever was with Shawn, and as much as I hate things he has done and who he can be, I can’t bear the thought of him going… and the fact that my nuclear family now consists of two in the Summerlands and one (if not two) with one foot out the door. Assuming I survive my own illness, it realistically won’t be long before I’m the only one left. And I’m not fucking ready for that.

Needless to say, I’m a tempest of grief in the teapot of my own little world. And I’m so very tired, and even still dancing every day with unceasing physical pain. I’m very much afraid the latest reprieve from my worser symptoms is only temporary–I felt close to death myself this time last year. I can’t bear the thought of going back there. I’m too in love with life, and too full of ambition and ideas. I have too damn much to do.

The one thing that is keeping the balance for me is this mantra:

My grandmother (who also passed away 13 months ago) is my spirit animal. My little Polish totem. I think of her all the time, and how she kept herself busy and healthy (relatively) until she was 97 years old. She was a force of nature, a spitfire who saw what needed to be done and did it. I have my sights set on emulating her; I want to wring the very last bit out of this life that I was given, no matter how sad or tragic pieces of it may be. I want to live to be an old woman who has made a difference. I want to leave this world, and my family, better than I found it.

Likewise, I’m trying to be as strong as I have always seen my brother to be: a warrior. In his case, it’s always been him against the world–that’s the tragic thing about his story. As for me, I just want to overcome the slings and arrows so that I can do good, fight the good fight. For everyone. That’s always been what I come back to, this feeling of hope and righteousness. In either case, you have to be fierce to win.

As for Mom–I’m only just lately realizing what I inherited from her, really. The dramatic part of me, the witchiness, the love of being the center of attention. The lust and passion. That’s all her. All things I feel robbed of right now, like I was robbed of her. That, too, is a whole other chapter.

But that’s it. Where I am right now, as we cross into a new decade. Hoping for better changes this time around.

My husband and I love to go thrifting when we travel. We do it at home, too, but there’s a special thrill in doing it in new places; unfamiliar country. Some of the coolest things we own, and some of the coolest things we’ve *seen* together, were in thrift stores, antique malls, secondhand shops up and down the coast.

This past year I find myself spending more and more time moving down the clothing aisles in these places, wistfully fingering things that couldn’t possibly fit me now. If I ever had a style it would be this: Bohemian. Borrowed. Eclectic collage. Thriftstore chic. Once upon a time I bangled, layered, wafted my way through the world in vintage glamour. Oh, I how I miss that.

Oh how I miss me.

What I want, more than anything, is to be a part of the world again in this way: I want to dress in found drama. I want to reflect back the joy of life, the fun, the romantic and the frivolous, the freedom in an outfit meant to be performed.

I want to perform again.

I want to be part of the tribe again. The poets and writers. The artists and songsters. I want to go under the lights in something that sparkles. I want to do that again, and often, for many many many more days. When I’m gone, I want my children to say that is how I spent my life.

Not like this. Not in this trauma body, here in this soft chair, in the same few house gowns, clothing picked for how it accommodates pain rather than how it will frame me on a stage.

Once, my mother lit up any room she entered. Once, she carried the glamour. Once she performed, in her own way.

But my mother got so sick that she never left her chair again. She lost touch with who she was, and her light went out. All I have of her now are far away memories, a grief that wants to swallow me, and her things–my favorite parts of her wardrobe stuffed into a closet now bursting with drama I can’t wear, for a life I too misplaced because of disease.

I can’t control what’s going to happen. If I can’t get better, maybe the best I can do is be grateful for what was, and honor it by letting it go with grace. Like my mother did. I fervently hope it won’t come to that anytime soon. But if it does.

Remember me as I was, not what I’ve become. Dress me in layers and treasures, the more eclectic the better. Dress me in poems.

Dress me in light.

Had a private yoga session today.

I used to love yoga. I was super stretchy and capable. Now, though, thanks to my various Conditions and traumas,  I have a totally different body. I have a pain body.

One Thing I’m beginning to realize: since I’ve essentially been ignoring my body for so long–ten years now–re-learning it is going to mean tapping into ten years’ worth of repressed pain. I found myself crying by the end of the session–not in distress or anything; just over-full, like a drippy faucet.

I suppose if I don’t find a way to modulate all that pain as it comes out, it could flood something.

Hmm.

 

 

Yesterday a really smart lady I know argued that the “for a cost of a cup of coffee” phrase in fundraising is a guilt-based trope—it’s better, she says, to focus on all the good things your cause has done already, and how much more you could accomplish with monetary support.  So, for the last day of the Riddled with Arrows “Feed the Writers 2018” crowdfund campaign, that’s what we’ll do!

The Good We’ve Done So Far:

Riddled with Arrows Journal was launched this year in order to fulfill a unique niche in the literary landscape: we exclusively publish writing about writing.  That is to say, our interest is in metafiction, metapoetry and writing that celebrates the process and product of writing as art. No other literary magazine on the scene today serves this genre—in fact, many markets actively discourage writing about writing.  With Riddles with Arrows, we aim to provide a safe haven for poetry about poetry and prose about prose. More than this, we seek to compile a body of literature that flies in the face of this arbitrary prohibition against Writing writing.

Thanks in part to the generous support of our friends and fans, we were able to produce three gorgeous issues in 2017 (plus one forthcoming), featuring award-winning authors and never-before published wordsmiths, genre writers rubbing elbows with literary literati, weird fiction romancing ars poetica, inspirational illustrations, and interactive hypertext—everything we’d set out to do and more.  We nominated for the Pushcart and other prizes, and earned recognition as one of Duotrope’s fastest-responding literary markets.

Riddled with Arrows was also designed  to be a writer-friendly market, and we remain committed to that goal.  As such, we:

  • never charge for submissions
  • offer at least a token payment to all contributors
  • encourage simultaneous submissions and reprint submissions
  • require no period of exclusivity after publication

How your contribution could help:

In 2018 we hope to produce at least three more issues of Riddles with Arrows, including both themed and open issues as well as a summer contest with cash prizes. We want to expand our non-fiction offerings with lyrical essays, weird scholarship, and other I-don’t-know-what-to-call-this artifacts.  We have plans for a virtual library, a blog, and more hypertext hijincks—goals which can be made all the more meta-tastic with contributions from our literary friends and family.

If you’re a fan of writers and the work we do, we’d be thrilled if you’d consider sharing a few dollars to help us reach our goals.  To find out more, click this link now!

I usually have my hand with me when I go places, and sooner or later I’m bound to look at it. So if I need to remember something really important, that’s where I put it. Note to self: Library! Call Mom! Shadow People! (wait, what?)

The dangers of being forgetful AND having an active imagination, though… The other night I looked down at my hand and saw THIS – with no recollection of having put it there, or why.

proof

So I’m like, Proof… of what?

It was funny, for the first few minuets – but the more I tried to remember what it meant, the more I had NO IDEA. 40 Proof? Proof… of aliens? Proof of life??

I mean, where would YOUR mind go?

After about twenty minutes I remembered – oh, right. I needed to get off my ass and respond to the proof of a poem I have in an upcoming magazine issue.

Which is good, because I was beginning to think it got all MEMENTO up in here.