Today has been a horrible day after a fantastic weekend. I let my reckless desires come out and I danced among them. I fell smitten for another beautiful boy who is equally as queer as I am. I showed him my feral, chained beasties and he wanted more. He pampered me, gave me gifts, sang to me. He made me believe I could do this again. Do the poly thing and open my steel doors of my inner world. Open so completely, all the bats fly out and the demons escape from hell.
Because my heart is a wasteland. And my body is the cracked, desecrated earth my dreams lay barren on. I am a thing stitched together with madness and horror. Nothing grows in my fields.
Sometimes I hate myself so completely it takes all my scraps of willpower to not fucking blow it all up.
My heart is a wasteland from all the nukes I drop on it.
It's been a while since I wrote. And for good reason. I'm struggling to not go hollow inside. I want to succumb to my artwork, to be possessed by inspiration and creativity. I want the muses to take me and ride my skin like a battle horse.
But there is always a cost. The closer I am to magic, the more insane I become. Hanging on to reality is already a Herculean feat. And this month is like a play-by-play in my head of Kweeny's Horror Stories: The Christmas Special!
A lot of terrible shit is bubbling up from the rivers of poison in my wasteland. Flashbacks, fibro flares, nightmares, no sleep, nerve pain, panic attacks...you name it. I'm a fucked up Kweenybeast right now. I'm fragmenting too. Dissociation is a bitch. Been reaching out to trusted folks for anchors in the storm. I feel like I cant stuff it all back in once I open the puzzle box. The demons inside wait for me to drop my guard before they tear my world apart.
I dont think I could date anyone who cant ride some storms with me and hold my hand while we crash against the rocks. I need my lovers to be just as fierce as me, so when I test them unfairly for the ghosts who tried to destroy me, they dont run for the hills. So when I finally drop my armor because I cant be the strong one all the time, they dont trash my bleeding heart with carelessness.
I'm fighting the urge to nuke this new, budding relationship I've started. And it was me who asked him. Though he might have been thinking the same thing towards me. But my mental illness won't let me trust even that.
Things have been rough around here, especially financially. Moving to Seattle took a lot of out of us, and we have very little family support to boot. Living in our tiny apartment costs more than it's worth. Debt collectors keep calling me to remind me I owe them money for being in the hospital last year, our car needs repairs, I need a job that pays at least 800 dollars a week, but I can only work from home due to the pain levels I am in, and I am opening my very own online shop with things I make with my own hands.
Life has been rather stressful you might say.
In a fair world I could just make art for a living and live off that. But I'm not stupid. I know I need to find something real soon, because things cannot go on this way. Having people nag me about it only makes me angry and gets nothing solved. I know what's going on. I'm not blind to it. I know somehow we need money, and I don't want to end up in the hospital again because I tried to do a job in the outside world. I can't get disability in this country because I have never had a job here. I spent my working years in Canada. I live in the weirdest grey area you can get, trying to scrounge what I can where I can. I might have to start a fundraiser, but I don't like begging for money. I want to earn it. It's why I made my business to begin with. It's something I can offer in exchange for that paper shit. I am not broken because I have chronic illness. I just have to find alternative ways to get funds. If anyone has helpful suggestions on what I can do to supplement the art gig, please let me know. Things are getting desperate.
On the positive side of things: I am happy to report I am days away from my shop Marrow Minded Crafts opening! I am nervous, because anything like this takes so much work to get off the ground, but I am happy as well. I get to do something I enjoy doing, that makes others happy! YES! I love my little shop, and I am happy with all the commissions I've made for others. Now it's time to branch out. Making things makes me feel empowered and creative. When I think of something I want to try, I just do it now, instead of agonizing about it. Maybe I am just done dreaming. Dreaming is important, but don't get stuck doing only that. Dreams take work. You need to commit to your dreams, and even if it takes years in the making, don't give up.
Things are going to get better. Because I demand it. #dontfuckwiththequeen
I wish I could tell you that when I wake up in the morning, it's like I am a warrior of old, strapping on my armor and picking up my heavy sword. That sounds much more like how I see my inner warrior getting up. But that's not how I do it.
I get up and gasp in pain. Instantly as I reach consciousness, I also feel horrible back pain. Sometimes I wake up in sweat, even on cold days. But right now, the weather is tremendously searing-ass hot out, and I am melting down to my bones. So I wake up sweaty, and I shrug. The pain is what I am now worried about, and I drag my sad ass to the washroom. I take some pain meds, then my psyche meds, then my supplements. I grab my cremes and start smearing them all over my back. Slowly the pain bows down for a while. I sigh and brush my teeth, one hand holding my body up on the sink.
Once I have fully medicated myself I eat and then do yoga. I do 20 mins or so and try to do as many poses as my body will allow. Sometimes, like today, I feel numb inside. I do things, but I am not feeling it. I can't handle the heat. It feels like it's burning my skin off and I am not even outside. Sweat is still dripping off me in rivers. I try going down for a nap to see if it helps. It doesn't. I wake up feeling nauseous. I put my clothes back on but they hurt my skin. Everything hurts my skin, even air. I'm trying to keep up my liquids because I need more than most people. I decided having a bath would cool me down. For a bit it helps. My skin no longer burns me. I even added some bubbles because I could. It's kinda lovely here until my neck screams at me. Party pooper.
I try doing art today. Or do some house work like cleaning the kitchen. I loose myself in art enough I ignore the horrible pain in my back returning. By the time I notice it, it's really bad, and broke through my creative flow. Now I am upset. That touched me past the numb place. I'm crying softly but I don't know why. No one is in the house right now but the cat. And she has heard me cry before. But I swallow it half way down. I just don't want to fall apart right now. It's not as bad as I am making it out to be...
But it is bad. Really bad. My muscles spasm. My heart aches. Nerve pain shoots through my body. I want to be successful. I want to be functional. I don't want to fall apart like my mother did. I won't give up...
I fall to my knees, like a wounded warrior. Blood pools at my knees and I see a broken sword in my hands. I am tired from the fighting. The constant fighting. When do wounded warriors get to rest?
But I know the answer to that.
And so I get up, clumsy, and smile for my loved ones who come home from work. Tonight I get to cook dinner. The pain in my every-place makes this feel like cooking in hell. Even things I enjoy doing, are hard. But I will do them despite my body's protests because they are mine, not the illnesses. I eat dinner, I tuck my loving husband in. And then I am alone with my pain. Again.
I sometimes like it though, but not always. I spend a lot of time alone. I work better alone too.
But I only work at night when I didn't work in the daytime. I rest now. I sit and watch a show or a movie and I rest. If I cant sleep due to pain, I make my space as comfy as possible. Because I had a hard day. And I am learning that I need this to be sane. To get through the hard times.
And I rest until I get sleepy. Then I drag myself to bed, take my night meds, and go to sleep. And I hurt. But exhaustion has the upper hand tonight. With her dark tendrils, she holds me and I pass the fuck out.
My wounds bleed out through the night through my armor. Because I don't have the energy to properly take it off. It feels like the weight of the world. My world. My weight.
This is how I endure a bad flare up day. It's not really exciting. Just a day mostly wasted to thrashing with my Chronic Illnesses. The days I can get shit done, pain be damned, are magical. I cope the ways that work best for me, and sometimes, just enduring the pain is all you can do. It too shall pass, but sometimes the wait takes forever.
I wish I could tell you that when I wake up in the morning, it's like I am a warrior of old, strapping on my armor and picking up my heavy sword. That sounds much more like how I see my inner warrior getting up. But that's not how I do it.
I get up and gasp in pain. Instantly as I reach consciousness, I also feel horrible back pain. Sometimes I wake up in sweat, even on cold days. But right now, the weather is tremendously searing-ass hot out, and I am melting down to my bones. So I wake up sweaty, and I shrug. The pain is what I am now worried about, and I drag my sad ass to the washroom. I take some pain meds, then my psyche meds, then my supplements. I grab my cremes and start smearing them all over my back. Slowly the pain bows down for a while. I sigh and brush my teeth, one hand holding my body up on the sink.
Once I have fully medicated myself I eat and then do yoga. Sometimes, like today, I feel numb inside. I do things, but I am not feeling it. I can't handle the heat. It feels like it's burning my skin off and I am not even outside. Sweat is still dripping off me in rivers. I try going down for a nap to see if it helps. It doesn't. I wake up feeling nauseous. I put my clothes back on but they hurt my skin. Everything hurts my skin, even air. I'm trying to keep up my liquids because I need more than most people. I decided having a bath would cool me down. For a bit it helps. My skin no longer burns me. I even added some bubbles because I could. It's kinda lovely here until my neck screams at me. Party pooper.
I try doing art today. I loose myself enough I ignore the horrible pain in my back returning. By the time I notice it, it's really bad, and broke through my creative flow. Now I am upset That touched me past the numb place. I'm crying softly but I don't know why. No one is in the house right now but the cat. And she has heard me cry before. But I swallow it half way down. I just don't want to fall apart right now. It's not as bad as I am making it out to be...
But it is bad. Really bad. My muscles spasm. My heart aches. I want to be successful. I don't want to fall apart like my mother did. I won't give up...
I fall to my knees, like a wounded warrior. Blood pools at my knees and I see a broken sword in my hands. I am tired from the fighting. The constant fighting. When do wounded warriors get to rest?
But I know the answer to that.
And so I get up, clumsy, and smile for my loved ones who come home from work. I eat dinner, I tuck my husband in. And then I am alone. Again.
I sometimes like it though, but not always. I spend a lot of time alone. I work better alone too.
But I only work at night when I didn't work in the daytime. I rest now. I sit and watch a show or a movie and I rest. If I cant sleep due to pain, I make my space as comfy as possible. Because I had a hard day. And I am learning that I need this to be sane. To get through the hard times.
And I rest until I get sleepy. Then I drag myself to bed, take my night meds, and go to sleep. And I hurt. But exhaustion has the upper hand tonight. With her dark tendrils, she holds me and I pass the fuck out.
My wounds bleed out through the night through my armor. Because I don't have the energy to properly take it off. It feels like the weight of the world. My world. My weight.
This is how I endure a bad flare up day. It's not really exciting. Just a day mostly wasted to thrashing with my Chronic Illnesses. The days I can get shit done, pain be damned, are magical. I cope the ways that work best for me, and sometimes, just enduring the pain is all you can do. It too shall pass. Sadly, pain should pass faster than it fucking does!
I'm sitting here listening to one of my favorite spoken word poets, Shane Koyzan. Every time I hear his poem To This Day, I cry.
Except today.
I'm numb to the very core of my being. It's how I can cope with the whirlwind of emotional and physical crap I am dealing with right now. I was dumb yesterday, having had a wonderful visit with a friend then trying to nap to get some spoons back. I ended up with less spoons than I started with, which was a bummer. So I totally forgot until I had to go take my dose for the evening, that I needed to get my refill on my drugs.
It happens to everyone once in a while. But when it happens to me, I get super fucked up.
My hands are trembling so bad, I feel like I am coming off of crack. This is the price I pay, among other symptoms. My life is full of warning labels and chemicals. Sometimes, they make me feel empty. I feel like that now. I had some mania this morning. I woke up earlier than normal and had a had time getting to sleep. I spent most of the day doing chores to burn off the mania, which was causing flares throughout my body because everything is connected. It really is true that if your mind isn't stable, your body wont be either. Especially if like me, you are super sensitive.
I hate that I need chemicals to function. I hate that I sometimes live in fear of the day my drugs run out. I hate that I can't just fucking be a functional human being. I had to go through a lot of mental bullshit to get to a point where I am now. I used to fear drugs of any kind. Even Tylenol was scary to me, until I started hurting in ways that make you loose all sense of dignity and pride. I do what I have to now to stay stable. My personal war keeps me fighting for my health and sanity.
But when I am numb like this, I force myself to say something, anything, and be heard. Because I need to be. I need to know I am not alone. That this shit happens to other Chronic Illness Warriors too. The loneliness gets to be too heavy. Sometimes the horrible shifting between beast and beauty leaves me with nothing left to give. I lie in the wasteland of my suppressed tears and wish something would give enough that I could feel a release of the pain. Just a little. I will take any little bit of peace right now.
Today I feel a callous on my heart. And I don't have the tools to deal with it. So I will ride it out to the bitter end, where I will probably be on my yoga mat weeping. Maybe tomorrow.
I did something really weird today. It took until now for me to get reminded what today was. I was going along having a pretty good day. I hung out with one of my best buds, I laughed over stupid memes and bad jokes with folks. I got to have a great dinner with great people. I even had some awesome animal moments with the Katface and my snakes.
I was feeling a little anxious, but I couldn't put my finger on why. Everything seemed pretty great...
Then Facebook Memories reminded me of this post: http://chronicwerewolf.blogspot.com/2015/06/dearly-departed.html
It's the anniversary of my mother's suicide....shit.
I actually forgot for a moment there. I lived my damn life and had a good time. I have been a bit numb lately, but that wasn't connected to anything. Just something that happens after a manic spiral, and I get really tired easily. Been sleeping a lot, though not restfully. It feels like chasing a dragon I can never catch...
But that is just a day in the life for me. My feelings are not connected to my mother.
And I refuse to feel bad about it.
So I forgot. I don't have to honor her. She wasn't an honorable person, and she never added anything good to this world. She doesn't NEED to be remembered all the time. I don't have to torture myself with horrible memories of how she failed me as a mother. I'm owning my shit, the same shit she threw in my face like refuse. I am loved, in ways she couldn't even fathom. I am strong, and I use the darkness she and many others beat into my soul as healing and hope for others. I don't give up. I have suicidal thoughts, even recently, and I wrestled those demon voices down. I will not be devoured by my internal hydra. I will keep cutting the heads off until there are no more voices left to destroy me.
I am glad I was distracted enough by love so I didn't dwell on hate. I'll do something special for myself later to remind myself I am worth it. I won't let the darkness take me down. Not today. Especially not today.
My week has pretty much started on Friday. I had a convention this weekend, and while it was a blast, it was taxing on me. I am exhausted, and my week isn't over yet.
That's one of the worst things about chronic illness. For me at the moment, I am always in a lot of terrible, mind-numbing pain. I sometimes go to these events and have periods where I am just wandering the halls in fugue states because I am so drained and sore I can't think. It's like shell shock. All the pain over rides everything and you go into a haze. The world is blurry and unreal, and the pain screams like demons. It sucks, but it is the reality of my life. I don't let it ruin my fun, but it does hold me back, if I am honest with myself.
So I finally bit the silver bullet yesterday and went to the doctor. I just wanted a refill on my medication, but I got so much more. After trekking my sore ass on the bus all weekend, I dreaded doing it again, and again this week. After I finish writing this, I am going to Portland for a Horror Film Festival. Pretty stoked for that! But getting there and back is going to cost more spoons that I don't have. I have already dipped into the extra supply. After this event, I am fucking spent.
But back to my doctor visit. So I had to wait for like 2 hours before I was seen, because I walked in thinking the place I was in was a walk in clinic. I was wrong. But now I have a PCP in Seattle so that's good. I also didn't expect for the nurse practitioner to be so thorough. She not only gave me new meds, she didn't make me fight for my Tramadol or Flexeril, and revealed to me something slightly scary...
One of the meds I was on had side effects so bad the nurse demanded I stop taking it.
Now I know when a doctor reacts like that, it's bad. They wont tell you how bad it is so as not to scare you, but if they outright say, "Please stop taking these!" You listen. I had been taking this medication for over a month now. And yes, it has scary side effects. But I tolerated them, hoping it would help me or get better. I trusted my old pain doctor. I thought he knew my health well enough by now to know what's good for me.
This is why I don't fucking trust health care professionals.
So after that lovely revelation, I was sent to get blood work done, and she gave me a referral for PT. Which is awesome! This nurse was fucking on the ball. And never once made me feel like a drug-seeking weirdo. She even complimented me on my attitude. I am fiercely positive, but even I have bad days. I think when I told her I didn't want opids that made her happy. But it's true. I don't want them. I just want to get to a truly functioning state. I am tried of living my life on the red flashing bar.
This image works for more than just RA
So I am glad to start making more progress in my health. It's been really rough lately. Not sleeping enough, waking up and going to sleep in horrible pain. The list goes on. But I have shit to do. Awesome shit. Like going to horror cons and festivals. I am honored and blessed to be a part of so many awesome, creative things, but at the same time I always have a small part of me dread doing them because of the cost to my health. It's all so mentally and physically taxing all the time. And having a week of constant shit to do isn't good for me. I have to pace myself better.
Except I really cant.
Because when I do, I can't do all the things I want to do. I just cant.
And by the end of it, I am feeling like this:
And that fucking sucks. I love going to conventions. I love film festivals. I love all the wonderful, weird ass shit the horror world brings. That is my home. Those are my people. I love them all, even if each interaction takes another bit of my energy bar away.
So while I sometimes wonder what the fuck I think I am doing when I feel so shitty and horrible, I do have some great adventures. And because of that, I am still living life, despite half of it being ruled by pain.
Fuck you pain. I hugged Tony Todd, got choked out by Kane Hodder, hung out with the Living Dead crew, and watched an Alien and Predator rip each other's clothes off on stage. With face hugger pasties even!
This has been one of my mantras for as long as I can remember. I am an independent creature, sometimes rather fiercely. I used it as one of my many coping mechanisms against a world that let me down all the time. My mother let me down, my sister, her lovers who pretended to be dads, teachers, mentors, etc. Etc...
People have let me down a lot.
But not everyone. I have had a few, very special people enter my life and stay there. No matter how far away I moved, or what crazy thing I did. They loved me, despite myself. But they weren't trying to save me. They weren't trying to cure me or manipulate me or any other bullshit of that variety. They came and stayed, even when I proudly and defiantly tell them I don't need them.
Because I don't need them. I want them in my life.
And I need myself more than anyone else.
"I'm a survivor. I am a fighter..."
Which is true. I wear my scars like medals of honor. I have seen and done shit they write battle sonnets about. I have seen the SHIT. And I live to tell the tale.
And that's what I plan to do. Tell my tales. No matter who is listening. I am more selfish about that now, and that's on purpose. I have to be a little selfish and accept that I am being so. Because otherwise I might bottle it up inside me and let it fester.
Sometimes you gotta purge. It's natural and okay. Sometimes, you have to release all those ghosts. They haunt you, and the longer you leave them, the louder they wail. Mine go from wailing into screaming real easy. So I gotta purge the darkness, so I am not consumed by it.
I don't play in the sun much, so I gotta be careful not to bake in the light.
Right now I am reflecting on what self care means, and how to reconcile it with my ideas of "warriors". To be a warrior is to be authentic in every aspect of your life. From the charming, comfy parts, to the twisted, horrific parts. Everything makes up the warrior, and the warrior makes up everything. Because my brain is a little abnormal, I dissociate and compartmentalize a lot of shit. It's how I survived.
I'm slowly getting good at teaching my inner warrior to do self care. It's not easy, because of how my warrior was shaped. That part of me was taught to be mercenary. It was taught to be nasty, ruthless, and stone cold. Hot tempered, undisciplined, and outright vicious, this is how I survived a lifetime of abuse. There is a lot of toxic masculinity in my warrior. Ideas like, "Only Bitches cry." "Fuck your excuses fat ass get up!" "It doesn't hurt that much." "You really wanna lie under blankets all day? Pussy."
Yeah, I nicknamed her the Sargent for a reason.
"I will fall, and rise above. Cuz in your hate, I find love..."
I'm slowly working to show her more positive role models. Things like warrior Queens, the power of yoga, swimming, and enjoying femininity while still being strong. It's not her fault she is like this. Someday, I might get into why, but I can't right now. Those stories are hard stories for even me to tell.
Teaching myself to learn self care, has been a challenge. But I am determined to learn it. Any time I am determined about something, it means I am serious. I am stubborn once I make up my mind to do something. I will always find a way to get it done.
And hanging around such awesome folks lately has taught me I am not doing a good job taking care of the Kweenybeast. And I should probably work on that. Monday's experience has taught me much.
So this is the general skinny of what happened Monday: I finally got to hang out with some awesome folks. I love these people. They are hilarious, kind and fun. The moment Bear and I showed up it felt like coming home, while still feeling a little weird. Just that surreal feel I get when things seem way too awesome to be real. I have built my own castle in the land of Weird, so I can handle weird. I can't handle so well feelings of Unreality. So I was a little disoriented, and then my body flared up. Oh yeah. Full on flare. It was already doing that to me for two days before this visit. I was just having a bad pain time. But I decided my loneliness was greater than my fibro, and went out anyway.
When the fibro flare it, I instantly regretted my choice. I thought, "Fuck me! Now what the fuck am I gonna do? I am so useless..." and as I am thinking this, my dear Little Sis took me by the hand and said, "Okay, we are going over here now. There's a big fluffy couch, and you can put your music on and rest."
Because of how she did it, I responded well. There was kindness in her voice, and no challenge. She didn't trigger my wounded pride, and just took me to where I could have privacy. I'm not used to someone understanding what I need, even before I figure it out. She just knew. Of course, she has fibro too, so that helps. When I am around friends who have chronic illness, they treat me better than I treat myself. All night, people took care of me. Once everyone at the party knew what was happening, I could let go. My inner warrior gets really protective when I flare. And she is a really intense presence. She will step in front without a blink if I need it.
But I am a proud creature. I don't like being vulnerable at any point in time. But I let it all go when I realized I was safe. That this was a safe place, and these were safe people. Not only that, they CARED I was in pain. They offered me blankets when I was cold, water when I was thirsty. When I started to get lonely downstairs I came and sat in the kitchen, and they put pillows under me and fed me.
They fucking spoiled me.
And that's the thing I am processing right now. Was that really them spoiling me? Or maybe I deserve this kind of treatment? Maybe I need a reminder I don't have to solider on all the time. Sometimes I loose myself in being strong. I'm afraid if I let go, I will fall apart like a house of cards. That people will see right through me to how horrible I really am. Sometimes I fear if I show weakness, I will be exploited again. I lost my last friend group over a year ago, and they never treated me like this. I had to prove myself with them. Constantly proving I was strong enough, stable enough, funny enough, creepy enough. It was tiring. And the moment I needed them they scattered like roaches.
But not these people. They were kind to me. They made me question how I self care. Because maybe I need a reminder that I can make my moments magical. That my needs are important. I don't have to prove myself. All my weirdness, all my mental and physical limitations...
Mother's day is coming up. Suffice it to say, I hate fucking family holidays. Mother's Day, Father's Day, Christmas, the list goes on. Halloween is one of the few holidays I do celebrate because no one, I mean no one, took it away from me. My mom used it as an excuse to kick us kids out so she could get high. Sometimes she even got into it and made us costumes. Those were rare, but beautiful times. The few moments I was allowed to be the child I was.
Mother's day is usually the worst for me. That and her death and birthdays. This year, I let her birthday just drift past me. By the time I remembered it, the day had passed. I had better things to do then think about someone who barely cared if I lived or died.
Mother's day is harder because people point it out. They post pictures of their mothers, they share happy stories about how wonderful it was to be raised by a woman who loved them. They are truly blessed. I have no such stories. I have pictures, but I don't want to look at them. They don't reflect the reality of what living with my mother was truly like. No one could possibly understand how good she was at lying. The pictures don't capture the pain and loneliness of living with an addict and abuser.
She was a narcissist, a drug addict, and a monster. She couldn't tell the truth to save her life. The part of her that still survived and saw what she had become is probably the same part that killed her. She had so much self loathing, she could fill an ocean with her tears. She was still human under the monster, and I sometimes wonder if that was the part that ended it all.
I'm not going to dwell too much on her on Mother's day. Not anymore. I am my own mother. Always have been. I comforted myself when things were hard. I cradled my inner child as she wept for her mother, wrapping her in the safety of my embrace. I raised myself, and my little sister. I signed my own permission forms, forging my mother's signature. Which isn't easy when your mother is an artist who writes in calligraphy. I stopped expecting her at my performances. I was in the choir and in musicals and I kept doing them for me. Not for her or anyone else. I don't need an applause to do something.
I am getting a tattoo on Sunday. From my sister of the heart. I told her I wanted a monster kid tattoo. Something that reflected what that means to me. I think it's the perfect thing to have tattooed on Mother's Day.
I am the mother of monsters. So Happy Mother's day self. Hope you have a great day Big Mama.
I never thought I would survive this long. I know that seems like a morbid thing to say, but that is the truth. I remember thinking to myself when I was shivering on the street, hiding in the corner of an abandoned donut shop, that I was going to die young. If I was lucky, I might make it to 21. But I knew the harsh realities of my situation then. I was an orphan, alone in a world full of exploitation. I narrowly avoided becoming someone's Old Lady. And I mean that in reference to actual Biker gangs. I lived parts of Sons of Anarchy because my mother did business with them. One guy took a shining to me at 14. He told me he would wait a few more years before he would kidnap me and make me his wife.
One of the many reasons I ran away as soon as I could.
But somehow I made it out of that world. I have been running away from The Hammer since I was born there. Because I knew that if I stayed there too long; in a world of thieves, drug addicts, and gang wars, that I was going to become like them and die. And like my mother, I am prone to suicidal thoughts. Only I went to get help with mine, so I could try to have a better life than what I came out of. So I could flourish and grow.
35 years. I have seen things you'd never believe. I have done horrible things, and wonderful things. I have known ecstasy and pain deeper than any sane person should. Being bipolar is like that though. Every experience I feel I put my whole self into. I don't know any other way to be.
And I knew that if I wanted to grow and shake the shackles of The Hammer and that life, I had to be brutally honest about myself. Especially to myself.
I just did a move in less than 10 days. My husband had been looking for months for something in Seattle, and this time he found it. A friend who lived there had a job opening at her work. She told him about it and he applied. I don't think he thought he was going to get the job.
I knew he was going to. I just knew.
He even got a friend from work to apply, and she got it as well. After much discussion, we all agreed to live together and help each other out. I am not normally so open to ideas like that, but when I met her we hit it off. So now I got a new friend and roommate who was a huge upgrade from the last one. All of the things happening under such a tight schedule was not easy to deal with. I managed to keep myself focused through it all so we could get to the other side in tact. I am still in an extreme amount of pain. It was hard, but not the hardest move I have ever done. I have moved across countries. That perspective actually helped me get through all this.
I am typing this as I sit in my new place in Washington. I live in Washington...
They say 35 - 40 is the best years of your life. And I am ready for some better years. I already have lost my ability to give a shit about things that will only drain my spoons. I need my fucking spoons! I don't need drama and catty bitches. I don't need to stress myself about such petty concerns. I don't need to dwell on the past. I got art to make, music to sing, movies to create.
Challenge Accepted! Bring it on Universe! Shower me in awesomesauce!
When I decided to be open about my chronic illness, I anticipated the day someone would misunderstand. It's human nature. No matter how much I try to explain and educate, there will still be people who don't want to know. And they don't care. They won't read your explanations, they will just make assumptions on what they perceive. And they can be downright wrong as hell. So you know what I do?
I adjust my fucking crown, give them the finger, and carry on.
I don't share my stories for sympathy. I do it for myself. If someone gives me such, then so be it. I appreciate compassion in my life, I don't have much of it for myself. I am working on that. Because in the end, the haters don't have to wake up in agony every day like do. People who struggle with chronic illness like me, don't usually hate on others. They know how precious our spoons are, so why waste them? Seriously, able-bodied jerks are the one's who laugh at a cancer patient's baldness, or mock someone for using medical marijuana. Or in my case, my currently swollen legs that I took a picture of and posted on instagram:
And that is just my feet. You haven't seen the rest of me. But I took this picture, and it wasn't easy. Looking at my swollen (and yes, it hurts like hell) legs and feet is hard. But it is my reality. It's what happens when I try to live life like healthy people. I don't regret my actions that caused this flare. Not one bit. I had fucking fun, and that doesn't happen as much as it should. For a moment, I got to pretend I was a Battle Crone and have someone elses problems. That's what makes larping great. Especially when you live in a world of constant pain with little to no meaning.
You make meaning happen in your life. You stand up for what matters to you. Because every spoon counts. Every breath counts. And I won't be silenced by stupid fat shamers who have no idea there are CONDITIONS THAT MAKE YOU SWELL UP.
With the drugs I am on, combined with the reactions my body has to just being alive, I have no choice to but to live on the razors edge. I make my choices very mindfully. I have to. Even if they seem stupid to others. This is my life, my illnesses, my choices. I refuse to be owned by my conditions. I refuse to let others tell me who I am. Leave if you must, but I will endure. I don't need you. I need myself, and my chosen pack. Haters gonna hate, but I don't fucking care.
I got better things to do then worry about the opinions of sheep.
I believed these words all my life. Before I ever saw Hellraiser or read Hellbound Heart. It's probably why when I read Clive Barker's book, I felt it resonated with me.
But this isn't about that. This is about Tears. Those wet, droplets of humanity that roll down our faces. Everybody cries. But not everyone cries with respect for their tears.
I have spent the last few days crying off and on. From soft, quiet tears that roll down burning cheeks to heavy, deep sobs that wrack my entire being in their power. Tears that have been plugged up for weeks, maybe even months. Tears I should let out more often.
I've had a lot of good reasons to cry. Around this time last year I was put in the hospital 3 times because my mental state was "unstable." I went through a lot, and I am working through the pain. And there is a lot of pain. Pinhead wouldn't be able to even touch the levels of pain I have endured, and I would laugh at his efforts of trying to break me.
But I was raised to fear my tears. To hate them. To feel shame when they rolled down my cheeks. Sometimes I even felt betrayed by them. A sure sign of my weakness. Of my face slipping. Of my composure breaking. It was part of my abuse. And because of that, I hated them with every fiber of my being.
When I grew up, my tears were used as a weapon. From my early years where my mother used them to beat me more, "Stop your crying or I will give you a reason to cry!" My rapists used them to dehumanize me and fetishise what they did. They'd laugh at my pain and get off on it, until I stopped crying and made them face my rage. As they held me down or forced me to do things, I'd glare at them with such venom, Jennifer from I Spit On Your Grave would fear me. Later in life when my lovers would tell me I was being "Too emotional"whenever it suited them to bail out of dealing with me, I would blame myself. Because crying always made things worse. It didn't matter the reason for crying. Tears have always been used against me.
So I tend to cry alone. I can fully feel them that way. And you really, truly need to cry sometimes. Even if you feel weak for doing it after.
I didn't cry until years later when my mother died. Not healthy, grieving tears. Sometimes angry tears slide down my face but they aren't the tears one needs to move through grief. They are a good opener, because my rage for many years was my shield against the shitty crap life threw at me. but angry tears feel like a betrayal. Any time I cry in public, I feel rage. These days, it's just shame, but I still get angry for feeling that shame. Because no one should feel bad for crying.
Crying is normal. Crying means you care. It's okay to care.
In a world where we are told conflicting things like, "I am cold and rational, therefore I am better than you...", having FEELS is a joke. Feelings are boiled down to a meme and a punch line, because no one wants to deal with them. Even people who feel too much like me. And being bipolar, I feel too much. I am on drugs to regulate my feelings, because my emotions aren't normal. I have a chemical imbalance that sometimes people use to explain me away. I can flip from complete cold asshole to raging crazy person depending on if I am manic or not. But I don't let the drugs mute me. I take what I need to stabilize, and no more. So I can have some rationality back. But I am careful to not let others tell me how to feel ether. Even my doctors. And I refuse to have my feelings belittled anymore. Boiled down to sayings like, "What are you, on your rag?"
Even if I am, I have the right to cry. My periods fucking suck thanks to PCOS. There is a reason I call it my "monstrous moontime." Everyone feels, even those who claim they are above it all.
Everyone feels. We all have chemicals in our brains that cause us to feel. Ignoring this fact does a disservice to yourself.
When you've suffered as much loss and heartache as I have, you have to fight to reclaim the parts of you they took. The parts you tossed out of yourself. Sometimes you have to reclaim those parts over and over until it sticks. The ugly tears. The raging wailing. The punching of pillows. The feelings of being small and helpless. You learn to allow yourself to feel fully. The deep pains as well as the surface stuff. You learn to forgive yourself for mistreating your tears. You learn to stop being "macho" to hide your sensitive, hellbound heart.
It's not a waste of good suffering. Tears make suffering more meaningful.
"When one has not had a good father, one must create one." - Nietzsche
I came from a broken home. And when I say it was broken, I mean the universe took the biggest hammer it could find and slammed it, over and over, into my life. The hammer hasn't really let up either, I just learned to endure it better. I'm sure Thor is getting tired of his hammer going missing.
So for me growing up, I had to make my own heroes. While girls around me drooled over the newest boy band, I was listening to Alice Cooper, Rob Zombie, and David Bowie. I was reading books and comics by Neil Gaiman, Clive Barker and Stephen King. I was finding people in the entertainment industry to look up to. They would likely never meet me, but that wasn't the point. When you hear a song that sounds like a familiar place in time, it can change your life. One song, could bring a whole world of magic into your life. That's what good music does. And good is what you make of it, not what other people tell you is good.
When someone I looked up to, even in the smallest way dies, it hurts. It hurts really deep. Today they announced Allen Rickman's death. Another one bites the dust thanks to Cancer. I am getting really tired of the sound of that word. Cancer sounds like a worse curse word than Fuck at this point. I've lost so many to cancer myself, and have friends struggling with it. Watching them fight is hard, and it makes me feel so many tumultuous things. It's a terrible illness. Just chews people up and spits them all over the cosmos. The bright ones still shine long after they are gone, reminding us that we choose how to go out when the curtain calls. Bowie worked right up until the end. That was not a man planning death. That was a man squeezing the last drops out of life.
I've lost people in my own life to Cancer, and know plenty more who are fighting it. Seeing so many of our heroes in the music, film, and the horror industry die is just hard to carry. I've gone numb today because of it. But the numbness made it so I could write this post right now. I haven't been able to write anything coherent in a while.
My father left me before I was born, and from then on I had a string of men come and go. My mother's luck with men seemed rather shitty. If they weren't abusive fucks to her, they were to me. One guy even adopted me when I was 6, only to drop me like a hot rock when my sister was born. So I didn't really have a father. I looked out into the world and people like Robin Williams filled the void. Never completely, but enough that I could endure my life and not completely hate men. I grew being beaten, humiliated, degraded and raped by men. So to me, my heroes were the closest feeling to family I have ever known. And I know how sad that sounds.
Some people have what they call "Geek Husbands". People they admire and have a little lusting for. I will admit if a man is attractive to me, but I tend towards being attracted to women. That's just how I work. I think I have more Geek Wives than husbands. But I have a pantheon of Geek fathers/uncles. Men who showed me how to embrace my gender fluidity. People like Bowie who taught me through song to "Embrace the Strange." I needed that guidance. I sure as hell wasn't going to get it from the men that lived in my mothers drug house.
When there was nothing else, I looked to the stars. I didn't need a mortal, flawed father. Not as a child. Something otherworldly was needed. To teach me to embrace my strangeness. Growing up, I cared about my Geek Father's more as people than just ideas. They fleshed out and felt like old friends I had never met. They were good to me when the world was not. I'm sure living as a star isn't easy. Especially when you are dying or mentally ill. So seeing my heroes struggle like I do, actually made me connect all the more to them. Robin Williams for a long time was my biggest hero because of his living with bipolar. But when he died, it devastated me. I am still not over it. When they locked me up last year in the mental hospital, I had pictures of Robin Williams in my sketch book my husband brought for me. I had ripped them from a magazine and tucked them among the pages of my book.
You never know who is going to shape your life. And you never know how long they will be with you. Gods die. We dont want them to and we sure as hell can't believe it when it happens, but they do. They die and turn to stardust, leaving their legacy behind.
If I can leave behind even a fraction of that kind of talent and gift to the people I care about, then I've lived a good life. And I look forward to the day I can hang with my Geek Fathers again.
