The Storyrain Blog

I really feel the loss of luster and engagement in writing. This feels...different. It's making me so sad and bereft. Writing has been a deep well of energy and engagement and joy for me since I was nine years old, with me all my life. Add to that everyone going to WorldCon and having lives...

I feel so left behind and so....waaaaah. I know I need to pull myself together, relax, just keep on. I mean, either it will come back, that luster and confidence and joy, or it won't. One has to find the joy there is, not forever lament that which there is not. Like able bodied-ness. Certain kinds of success. Excitement and engagement in one's writing.

Oh feh. I will cry and pet some cats and wah as necessary, I guess.

Living between dosings of gabapentin, Benadryl, and Tylenol, from one to the next, and still, in between, my fingers burn and itch and hurt. Making myself a zombie so as not to tear them up further and make things worse.

I cannot describe how tired of this I am.

The last finger had finally healed with a fragile new skin, after months and months, because scleroderma/Raynaud's ulcer wounds just heal very slowly, and then, thwap, covid, chills, prolonged Raynaud's episode, and my hands are a fucking war zone again. Everything I do, from bathing and dressing to food prep, dishes, trash, cat litter cleaning, and other chores, is difficult and painful.

I would not kill myself, because cats, and loved ones, and I still have writing I'd really like to do, if I can ever come clear of this state and not be a zombie again, but the thought 'I wish I was dead' has crossed my mind many times. Doing so much to try and manage this, and still it's so awful and I despair. I am so beaten down.

*unless you've had scleroderma/Raynaud's for over 20 years or are super familiar with it, I am not looking for advice. I'm doing everything I can, as far as I know through medical directives, support sites, and my own experience.

Sad, angry, hopeless, uncertain, fearful…I have a lot of feels around scleroderma’s ongoing assault on this body I live in. I, me, this flesh, brain, organs…breath. Sometimes the anger or fear are so sharp they wake me from sleep; sometimes I wake crying. Occasionally I wake grateful that the cats seem well and happy and I get to be here with them, enjoying my little loft home that I got the grace to make for us, that while my hands will never be fully healed, they are better than they were some months ago, and the same goes for my guts, now that the sleroderma has fully involved them. Then there’s my lungs, how tired and out of breath I get doing simple household chores…

So. I am doing therapy, the psychological kind, as well as now, finally, seeing a hand specialist for OT (I should have been seeing one years ago, but no rheumatologist ever suggested it). These are good things. But.

Oh gods, the wailing in my heart, the sorrow and hurt.

There is no normal…showering, dressing, preparing food, all are fraught and difficult.

And then there’s writing, the actual process of which has always been a refuge, an energy giver, a reservoir and joy for me. The career side less so. Though sharing the writing is a part of its life, the emergent point of its existence. A glimmer of good stuff on that side in the midst of the hard weeks post-hospital has now dimmed, and my focus in writing is challenged by the gabapentin cotton wool I have to be in to not tear the skin from my fingers.

Am I tired? I am so tired. And there is no cure, no course of treatment, no other side or end in sight but the end. There are better days, stretches of them, is the hope, there are loved ones, sweet friends and family…

But goddamn, it sucks, this sucks. I want to be happy, to have joy and light in me, to give and share good stuff. I want to be able to travel, but it seems so scary right now, in the uncertainty of how my guts will react to it. I do not want to end up in the hospital again.

So I do the chores I can, take care of my hands, eat carefully, watch the light move across the windows, do crosswords, make digital collages, build beautiful weird things in sims, write some, read, watch stuff, go for walks and get out of breath, meditate. It’s kind of a victory that I can get myself to movies now, and watching a film in a theater is an escape I relish.

I need a hug, a huge hug that holds me and supports me and makes me feel safe and loved and cared for. And I could really use some wins, some unfading glimmers of light in the writing career, some good stuff.

Trying to sit with the uncertainty, the fear and anxiety of it, meditate with it…makes me cry, is what it does. I am here, doing my best. But man, this shit is hard.

When I was a kid and a teenager, and periodically on into adulthood, I had debilitating anxiety. I described it as feeling like I was walking on an unreliable dock over deep, dark, oily liquid nothingness, catastrophic black waters, with the sense that things really weren’t all right or okay, under the surface—and the surface was not solid.

Learning to meditate at 11, and eventually, as an adult, taking anti-anxiety & depression medication, gave me a sense of solid footing, in myself, in my breath, in love and connection.

Now I find myself thinking that the description of the anxiety I experienced as a kid sounds a lot like a premonition of the future we humans were making, and that of the animals who are cursed with our presence on this planet.

The good stuff is still real, but we really do have dangerous abyss at our feet, and the surface we tread day by day is not as solid as we think; and that abyss is formed, in part, of oil and greed and the darkness of a refusal to see.

Reality crumbling in our hands

Like some Dickian nightmare

Evidence of infection in the veins of every day

Monsters who are monsters because they

Care only about themselves and

Will only support those who either

Resemble them, fawn to them,

Or provide gratification to them,

Passively, like surfaces mapped with

Scars, the impress of

The monsters' warped psyches

Naming the monsters—white, cis, male, heterosexual—is not

Helpful, because like any monsters, they are distinct from others

Who wear the same labels and are not

Monsters

Naming doesn’t help, as it does in fairy tales

They go on raining destruction

Undermining bridges

Burning all that nurtures, protects, is beautiful or

Worthy

I, who as a child daydreamed of being one of

Arthur’s knights, I want to slay them

I guess I’ve always been a little blood thirsty

But only for the blood of the evil

Like a cursed sword, lost

In a very deep lake

 

I have been pretty spotty on the social media webnet of inters recently. The constant stream of outrage model of Facebook or Twitter engagement was burning me out like an old-tech bulb. With smoke wisping out of my ears. Meanwhile, it's hard enough getting fiction written with a dayjob--even harder when I wake up at 3am with visions of going all Ripley with a flamethrower on some lying, abusive, fascist jerkwad bullies who are taking over our government intent on dismantling everything it does that is good or protective or forward thinking, in the service of more money for the already too fucking wealthy.

So, recalibrating.

What I've decided is that it's everyone's personal responsibility to stay informed and be aware of the outrages being perpetrated daily (which has been the case since well before this egregous uptick in awfulness, btw), to be aware that things perpetrated by these lying fucks are already impacting the lives of people and other animals in serious, injurious, and life-threatening ways. Further to that, here are a couple of links to resources for staying informed, if you don't already:

• Stephanie Leary's Fascism Watch, a good general rundown: http://s-leary.tumblr.com/tagged/fascism-watch


• What the Fuck Just Happened Today: https://whatthefuckjusthappenedtoday.com/


• The Guardian, which has become my news source of choice (consider throwing some money their way): https://www.theguardian.com/us

Going forward, while I will be making calls, writing postcards, and going to marches, and will surely still sometimes post things political, my focus when doing so will be on positive things--calls to action, amazing things women, queer folk, PoC, and others are doing. Otherwise, there will be joy on my FB, Twitter, etc., (Tumblr, my happy place), stuff about what I love: books, movies, art, whimsy, rain, beauty, cats, animals, music, the funny.

I can't let those horrible people take up so much real estate in my brain and imagination, I need it for better, much more attractive, things. Given the state of my lungs and other health issies...I just don't want to waste my beautiful mind on them. And, as it says in this nice little op-ed piece from Arianna Huffington, "The goal of any true resistance is to affect outcomes, not just to vent. And the only way to affect outcomes and thrive in our lives, is to find the eye in the hurricane, and act from that place of inner strength."

As I sit here half in denial but beginning to grapple with a choice I don’t like, wondering if my lungs will ever again be up to a real hike in a beautiful natural place, to breathing in the marvels of this planet, and if the medicine I may take to try and halt the damage encroaching on my lungs will only further undermine the quality of my life, tie me to very regular blood testing, fear of infection, make it very hard to go, and do, and be, with freedom and vigor…

I see all that other people go and do and accomplish while they are being, and I look for some profound, meaningful, useful, or at least comforting perspective and insight, to help myself help myself. I feel like I have work that’s worth doing, writing-wise, and living that’s important to me to do, and joy I want to give, receive, experience, share. But of course it’s not super important to anyone but me.

I want to swallow a small bio-printer and have it print me new lungs. Or have the scleroderma relax its hold and my lungs stop getting worse, just stop here so I can still do things, even if I get out of breath and have to stop and rest while doing them.

I want to curl up and cry and have some great, beneficial love hold and hug me inside and out. I want to not feel so alone with this, and every decision and task that faces me. But I have felt alone since I was six and realized parents weren’t always there, were in fact quite absent, that nobody was or would always be there and no one was protecting me, and I am so used to feeling alone that it’s become hard for me to let anyone that far in, that close.

I am thankful for the cats, who cuddle up to my heart, purring, soft and warm, every day. I am thankful for my friends and loved ones, who are there for me, I know, to whatever extent they are or can be. But it would be nice to have a person who was here for me in a more physical, pragmatic way.

I am afraid, and I don’t want to be alone.

I’ll be strong again, at some point, resilience is a thing—until it’s not, I guess.

When I am having a hard time, I tend not to engage social media much; I have been having a very hard time lately. The physical depredations and ills associated with scleroderma are very much kicking my ass. While none of them taken separately are life-threatening--though my lungs are kind of fucked, and, you know, breathing is nice--all of them together: seriously diminishing my quality of life. I am so angry at my body, angry, exhausted trying to deal with it all while working full time and living alone, defeated because there's very little energy, time, or focus left over for writing and I start to feel very pointless when I don't write. Tired of pain, just, tired.

I've had some planned blog posts, on writing-related topics, but right now, this is all there is. I cannot huddle up with a partner or physically-present family member to deal with this stuff, so I guess I'd better write about it, because huddling up alone with it is making me want to die. Last night's thought: move to Oregon, live until all three of my current cats have finished happy, well-cared for lives, and then check myself out of this increasingly icky and unhappy mortal coil. (I wouldn't check out without honoring my responsibilities, and I wouldn't leave my beloved kitties to suffer--really, I wrote a story about this stuff, "Brilliance.")

What I pictured at nine, ten, eleven, my first years of writing fiction: a life writing novels and seeing them published and out in the world, being read and disappeared into the way I loved to disappear into books, giving back some of what books and their authors gave me. Despite having some talent with words, voice, and yes, novel-writing, it hasn't played out that way. Only one of my books has so far seen the light of publication, I can't seem to get traction or hit it right in the publishing world, I am so far from being a publicist or public persona that I am just not able to compete in the current reality. So, perhaps the life I envisioned, though I've worked diligently for it and at it for a major portion of my 51 years, just isn't going to happen. I don't have the support, the chops, the luck, and now, the energy. I'm not saying I give up, I will keep writing and sending shit out, but I have seriously lost faith in it ever coming to anything even remotely resembling a satisfying career--like say, more than one novel published, a readership, some reward and recognition to buoy me up now and then...

I keep thinking of that Beckett quote, "I can't go on, I'll go on." But, lord, I'm ready to be uploaded to my robot body. This one SUCKS.

A few words of advice based on recent things of my life.

If you agree to be the executor of a friend's literary estate, make sure said friend has made sure the will in which you are so named is legal by the standards of the state in which said friend resides. Otherwise, in addition to missing your friend, you'll have to deal with contracts & requests piling up while a lawyer in Tennessee does god knows what.
*
If you have animals and no children, try to remember, when you have to start spending a lot of money on the furry one's health, that at least you don't have to send them to college.
*
Don't have problems with styes if you have weird skin because you have scleroderma. You will be fucked.
*
If you're feeling some despair over the novelist career you've been paying dues on for almost forty years...just keep writing. Keep writing because it keeps you sane, because you know you're good at it, because it gives you good energy, because you'd rather keep writing than not.
*
Be nice to yourself sometimes. Breathe.

In other news, for those not FB or Twitter compliant, story sale! Rick Klaw has kindly accepted "The Chambered Eye" for inclusion in Rayguns over Texas, the official Worldcon 2013 anthology. I will be added to an already impressive ToC.


*
In other otherness, reminding myself: I don't congratulate people so they'll thank me; if they ignore me while thanking other folks, that's no reason for me to take any bad feeling to heart or to feel any less generous or friendly toward them or anyone else. Be generous of spirit because you're the one living in this skin.  

(this smidget brought to you by an ongoing attack of the rabid insecurities, which are as ridiculous as they are mean)