Monday, September 23, 2019

stream of consciousness: September 23, 2019

The cursor blinks. On, off, on, off. Like a digital metronome counting out beats while I stare at the word processing app I'm using.

It's homey. Green on black, slightly serifed and pixelated font. An homage to the word processors on the Apple ][ computers I used in grade school.

I've got music playing in the background, coming from the same computer. Running on a randomization algorithm, playing from the nested smart playlist I first set up when I got a car in 2012, to make sure I had random music I wouldn't have to skip through constantly back before I had a car with a built in bluetooth system that had on steering wheel controls.

"Shame on us, doomed from the start, may god have mercy on our dirty little hearts" Trent Reznor croons to me, on a remix of Zero Sum from an album from 2007.

"All we ever were, just zeroes and ones"

Is life just some pointless zero sum game? Is it all just failures and pyrrhic victories and loss?

Fuck it feels like it these days.

I feel lost. Stuck.

Pause from writing. Hit the next track button on my keyboard several times.

Nope. Nope. Nope. Nope.

Weird deep cut from the Sneaker Pimps, back when Kelli was still in the band. Ok, that will do.

I feel confident and good enough just until something actually happens. So here I am, stuck waiting on so many things. Waiting to hear back on jobs I've applied for, if interviews will be scheduled, even though I've shared availability.

"You are the reason I've been waiting all these years … and I just ain't got the time … what's more I'm wasted, and I can't find my way home" sings Kelli, as weird trip hop electronic trebles play in the background, whines and bloops and brush snares.

Do I have a home? Did I ever have a home?

I feel lost, restless, unmoored.

Drifting, alone, waiting.

So much waiting.

I still have somewhere to sleep. Still have a pair of cats who, as I've basically been at home since I lost my job in mid August, spend about 80% of their time within 5 feet of me.

Harvey Danger b-side next. A twinge of heartache. A flood of memories. I feel the tears starting to well up in my eyes.

I can see myself reflected in the screen of my laptop. A smart-assed tshirt mashing up Aliens and Jurassic Park that had the collar sliced out, turning it into a boat neck. My beloved Nine Inch Nails "Anxiety" beanie. A swoop of bangs obscuring the right side of my face, pinned tightly to my forehead by the beanie.

I look exhausted. No makeup, fuck what's the point of makeup if you're not leaving the house? There isn't one. My weird makeupless face, with invisible eyebrows and lashes. A mouth set in resting bitch face.

Skip some more tracks, up comes IAMX. Chris Corner after he graduated from the Sneaker Pimps, getting darker and stranger and more sexual.

Sometimes I desperately want to let the darkness and depression and anger take over. Let all of the negative emotions have their way. Devolve into a sad angry hermit, like Gollum. Hide in the darkness. Abandon being around people.

What even is the point of trying to grow and change? I swear I'm just going to get hurt and abandoned more. Have another job where being a brilliant assertive quick on the uptake solution finding woman will be a detriment instead of a feature. (Fuck, has it ever once been seen as a feature?)

Skip a bunch more tracks, wind up on a relatively recent Zeromancer song. Oh, no, its from 2013, that's 6 years ago. That can't count as recent, can it? Recent is like in the last 1-2 years at most, isn't it?

Switch out to Finder, check my laptop's battery percentage, since I intentionally am writing in a mode where the menu bar doesn't show up.

Compulsively open Mail to check and see if there's anything new in the global inbox and in a folder that bypasses my inbox.

No, nothing.

C'mon you have to stop kidding yourself. The dark part of your heart is probably right. The pessimism tends to be accurate. Hon, c'mon, look at your track record. It isn't just negative thoughts manifesting themselves. You're damned, damaged goods, a curse, a plague — there's no way things will ever work out for you. You are a walking disaster, you will always be alone. You only exist to hurt and to be hurt.

Gods will these intrusive thoughts never go?

Four years of therapy. Cutting off my abusive family of origin. Cutting off the toxic friends who repeat similar things, all while they try to get in my bed.

"It doesn't hurt but the words go nevermind" sings Chris Corner.

Skip a bunch more tracks, land on some Looper.

"I remember there would be a pill you could take instead of eating food" says Stuart in Tomorrow's World.

How the heck do I get to tomorrow's world? By living day after day after day. But it won't ever be what I imagined, what I hoped for.

And whatever happens I'll just be trapped inside my skull. There's no escape from that. No escape from me.

It's an overcast cloudy day. Everything feels washed out, drained. Myself included.

I'm stuck. I'm stuck waiting. So much fucking waiting. I want to scream "hurry the fuck up already" at the universe but I know that won't change anything.

All I can do is repeat my routine. Check to see if there are new jobs to apply for. Check to see if I've gotten emails. Check to see if things have changed.

It doesn't take long to do those things. I finish those tasks quickly. Back to waiting.

I guess I could watch something, but I'm too restless from waiting to focus. Same goes for reading, my mind moves back to worrying over the things I'm waiting on. "How many business days does it take for people to schedule an initial phone call? Was two weeks of availability not a long enough window of time? Should I have put a third week out?"

Check for email. Check Twitter. Check Slack.

Respond to a tweet from a friend. Have some more feels slip in. Look over at my cat, curled into a loose ball, sleeping about 4 inches away from me.

Take a deep breath, breathe in, breathe out.

Think about playing some more video games, but can't bring myself to.

Sure, I can make progress as an in game avatar, but in real life what progress have I made?

I mean, I at least know some of what's wrong with me. A thyroid my own body is destroying. A frenzied brain unable to stabilize its moods on it's own. Chronic fatigue that I can't seem to mitigate in any other way than limiting my activity so it doesn't trigger.

"This is only rain that falls sometimes, the rain doesn't change a thing" another Looper song.

I could hop back over to the XOXO Slack, encourage other people in a discussion about Inktober, share some weird spooky ("spoopy") animal pictures I find from trawling Twitter, dump some more feelings in the bad attitude and scream channels. But things are kind of quiet on Slack, and I don't want to burden people, or seem too pathetic by posting too much. I mean, I did go on a twitter rant a few days ago. I know some folks are already worried about me.

I have to pour out all of these thoughts and feelings, there's just too fucking many of them. I'm overflowing, and it's scaring me. A number of folks are getting the brunt of the overflow, beyond the "screaming into the void" of these blog posts and dumping out piles of thoughts and words on Twitter.

It doesn't matter what the outcome of things are, I'm terrified of all of the possible futures. How fucking sad is that? Being just as terrified for good things to happen as bad things as meh things.

The worst part is I can't predict what's going to happen. Everything has been topsy turvy this year.

The cats are sitting by my feet, grooming each other, and sometimes my foot. Aw you adorable little weirdos. You seem to actually love me, and worry about me in your own cat way. Jumping into my lap for pets, coming to collect me when it's time to turn off the lights for the night and sleep, and then pressing up against my back or the back of my knees or sleeping near my face, a paw on my hand. Waking me up in the morning with a wet cat nose on my arm or in my armpit.

Laptop starts to act weird, check the battery level. 3%. Take a minute to grab the power cable and plug it in.

"Fuck what I want, fuck what I need, I'll sacrifice what I believe" screams Jessicka, "will you love me any less if I hurt you any more?"

I don't even know what I want or need anymore. I feel so lost.

Should I have lived my life up to this point differently?

What should I change going forward?

The nine of cups, a million possibilities stretched out before me, and me? Paralyzed with fear, unsure of what to do.

At least with some of the things that I'm paralyzed by it isn't solely on me to decide where things go from here. Yes, I still have some say, but… if the other party says no? That gives me some closure. I won't have to worry about what I was considering if it's no.

It'll just be another thing to accept. "Oh. I see," I can say, and then walk on.

"Well Vanessa, the only thing in common with all your failures is you," coos the introject of my mother, trying to strip away my hope.

Hope is such a shitty double-edged sword, and at least for me it cuts both ways.

Saturday, September 21, 2019

Gom Jabbar

"What's in the box?"


What's in your heart?


Sometimes I would give anything to have someone hold a poison needle to my throat, waiting for me to flinch or act out from the pain inside my heart, the pain that is my life.

Who needs a million lifetimes of other memory when one brain can contain so much pain.

A few months ago I had to start a new non-standard psych drug. Amazingly I'm not allergic to it. But it had a weird, serendipitous side effect.

Suddenly pain I didn't even realize I had vanished. My body stopped hurting. I couldn't even tell I was hurting anymore — it was background radiation. I'd just adapted to constantly hurting, until I started this new medication.

It was unexpected, to say the least. The medication did do its job, my hypomanic mind calmed back down. I think I was only agitated for a few weeks.

But… I didn't expect or anticipate the other pain loss. From talking with my primary doctor, and doing research, it sounds like I've got some degree of nerve damage from my latent Epstein-Barr infection (for folks playing along at home: that's the virus that causes mono — it has pretty much fucked my immune system and every so often, typically when I'm really stressed/burnt out, I'll have a relapse; yep, I get to have mono over, and over, and over again). Which isn't surprising since Epstein-Barr is in the same viral family as chicken pox/shingles, which are also known to cause nerve damage.

Similar to trying to think back to a time before I had chronic fatigue, I can't think back to a time before I hurt. I wiped out most of my childhood because of trauma. I would have been really, really young. Probably under 10.

It's really hard to think about how much pain I have. Physical, emotional, psychological… There's just so damn much of it.

Coping with all my pain is exhausting. I go to therapy and try to work through the psychological and emotional traumatic pain. I go to so many different doctors to try to figure out the physical pain, which lately has been an incredibly frustrating and disheartening "well, there's nothing I would do for you" "you're asking for a bleeding edge treatment from Europe, I'm not comfortable doing that" "there's no way all of your symptoms are coming from this condition, have you had XYZ test done? It's probably something else. I'm not comfortable recommending the bleeding edge treatment from Europe because all of my [ancient] patients aren't happy with the outcome, and then you'll be my patient forever" — since May I've been trying to get the local teaching hospital to consider giving me a surgery that actually gives me hope, and it's so frustrating. Also, doc insisting I'll still be your patient forever? Fuck me, you're joking, right? You won't listen to me, you would never be a doctor I select for myself.

So, sure, the nerve pain is gone, but the chronic fatigue is still there. It's getting worse. I had a thyroid ultrasound on Wednesday and my thyroid is almost gone. I don't understand why, with my thyroid targeting autoimmune disorder, these doctors won't even humor the idea of removing the target of the antibodies. Maybe there's something in the science I don't understand — maybe the thyroid targeting antibodies will start targeting some other organ (like, look, I'm not a doctor or scientist, but I am pretty fucking sure that isn't how targeted antibodies work).

"There's too much scarring, too much damage. The surgery would be too hard. The odds that we'll damage your vocal cords or something else in your throat are too high." Oh for fucks sake, the odds are infinitesimally low, especially since your surgeons perform over 800 surgeries on this specific gland a year.

Fuckers, don't you understand? All I am is scar tissue. All I am is damage. Take the fucking butterfly gland out. Get it out of me. I am so done with butterflies.

Maybe I just don't get it — maybe my thyroid has almost entirely atrophied away after 23+ years of having an autoimmune disorder picking away at it. Maybe all that will be left in a few more years will be scarring.

But there's nothing to stop the autoimmune disorder from continuing its destruction. Hashimoto's thyroiditis is a "woman's disease" so no one gives a fuck about it. Oh you've got euthyroid levels? Your labs look normal? That chronic fatigue must be psychosomatic, or maybe it's something else. No I don't have anyone to refer you to, chronic fatigue is a woman's disease, there aren't specialists for it outside of woo-y naturopaths. You can go see them, eat a handful of pills every morning, spread out over 2 hours.

Been there, done that. Same shit, different day.

I know from listening to my body that my thyroid levels fluctuate more than I can easily capture in every three month blood draws. But doctors don't listen. Don't care. "Take more medicine." "Let's add back cytomel, that should help." Been there, done that, made things worse. Went hyper thyroid and jittery, like I'd had 5 shots of espresso, but with chronic fatigue and heat sensitivity and overheating, so all I can do is lay down, twitch, and sweat.

I'm so sick of walking this tightrope of trying to balance out my body.

A thyroid is like a thermostat that tries to keep your body at the right level of functioning. Mine hasn't worked properly in a long time, and I've got something in my body trying to DDoS it off and on. It keeps getting weaker and weaker and weaker as time goes by. Even with my medication it gets stuck in too hot or too cold periodically, and then I shut down, because it triggers the chronic fatigue, brain fog, and mood swings.

If I understood the ultrasound properly there's less than a quarter of what should be a thyroid left in my neck.

-sigh- I want it gone. I want the surgeon to intentionally leave a scar. I won't even mind if my voice is permanently hoarse. Fuck, I'd welcome it. I would even welcome losing my voice. No one has ever listened much to it anyway, it wouldn't be a loss.

I so desperately want to close out the thyroid chapter of my life. Take whatever modicum of tissue is left and have it cremated. Spread the ashes someplace where that part of me can rejoin the carbon cycle.

But I have to keep carrying this pain. Keep carrying the scar tissue that remains from this atrophied gland. Because no one will listen and remove it, free me from it.

I think the thing that upsets me most is that I can't choose which pain I have. Can't choose which scars I bear. Not in this situation.

Fucking butterflies. Fucking thyroids. Fucking pain. Fucking trauma.

I'm sick of them all.

Life in a pain box without a gom jabbar sucks.