My House

Addendum 2017: I find myself once again finding comfort in these words. The trauma I have endured lately reminds me of this piece. Because I refuse to be silent this time. If people are going to hurt me, they should know as a writer I will use that hurt and turn it into art. I've changed a few things, but kept the essence of the piece. I could use a few fuses tossed my way if you got them to spare.

Addendum 2013: I sometimes need to read old posts I've written, to remind me where I am or where I've been. I also...get all editor on my shit too when this happens. Hence why this has now popped up in my feed when I wrote it like 2 years ago. Feel free to comment, because honestly, it's still relevant. I think it's the best metaphor I have come up with for the struggles I have with mental and physical illness.

Note: I wrote this originally when I was living apart from Bear.

***
Yesterday I was feeling more low than I have felt in years. My husband, being the wise man he is, told me this very appropriate metaphor to explain how I, and probably most people, deal with tragedy in their lives.

Each of us lives in their own house. Our houses are our bodies. Our souls live in the house. We have lots of things hooked up to the wall jacks that take power. TV's, fridges, computers, etc. All these things are plugged into a main power source, the fuse box, that keeps the house warm and things going with energy.

Outside the house is a terrible snow storm. Call it the looming shadow of Death if you will. Because death is always with us. We may ignore it, we may have nicely warmed up houses with all the energy we could possibly need to power our "devices", but it's still there. It will always be there.

Now, call the devices things like work, children, friends, family, whatever. Anything that demands your energy. Even if the demand is wonderful. Hell, everyone loves having a TV right? Watching shows and movies is fun! But still, your time, your focus, your energy is put into that device while you have it plugged in.

So what happens when things go wrong? Why is it some people can handle stress better than others? Why is it some people endure more than they should, or fall apart in sometimes spectacular ways?

Some people are lucky. When their house was built it was on the right property (support), for the right price (financial stability), in the right neighborhood (family), etc. They just got it made. They barely have an issue, and if they do, they can't usually handle it well, because it's not normal. So if they have an issue, a fuse blows in their fuse box. It's cold for a while. Remember, it never stops storming outside. It may be beautiful to look at sometimes, or terrifying to face, but it's there. And it will take you and your house down when it's time.

So if a person who is fairly stable and secure looses a fuse they may handle it well the first time, or that may make them freak out. They may be terrified of the storm. They have a few choices on how to deal with it, as we all do when the fuses go out.

1) We endure. We huddle under the blankets and just go numb. It hurts for the first little while, because cold sucks, but eventually you become so numb you feel nothing anymore. Sadly, lots of people do this one. This is when you see a soulless look in someone's eyes, or you hear them say, " No big deal" when their husband is beating them senseless, you get the idea. I myself have done this, but very little. I don't endure this state well. I'm not built for it.

2) You decide to take action. Fuses are not gonna come to you overnight. You may have to mail them in, (because you cant leave the house) or wait for someone to come to your door. The thing is, you can go to other people's houses, as long as you don't leave yours. (Just pretend that makes sense. On a spiritual level it does, not a rational one. If our houses are our bodies, and our souls live in the house then yes, like turtles, we carry our home with us.) So someone may give you a fuse. But if these things don't happen, your only option now is pennies. You put pennies, which is a temp fix but it works, into the fuse box. Your fuse has blown because too much was plugged into the circuit. You have been overloaded with emotion, stress, whatever. Even good things can blow a fuse if they are intense enough. Trust me, I've blown more than I can count.

3) This is the option that is the most painful, but sometimes all people can see. Sometimes, it's all that is left. Because a Fuse Box isn't about rationality. It's about stability. It's about the mental functions of a being. It's the heart of the matter. So sometimes, when all you see is a broken fuse box that pennies can't fix anymore, and huddling under blankets isn't helping, and no one brought you a fuse and you have no money to mail in some, well...

You choose to go outside.

This is suicide folks. Because eventually the house will burn down, or your house will be so beyond repair and you wait inside for winter to take you. But if you choose to go outside, well, you've chosen your death. I am not condoning suicide here. I'm not saying it's a great choice. But sometimes, for the people in the house that's breaking down, it's all that they can see. If your mental fuse box is so damaged, and your blanket is a thin sheet...

You might choose to just face death.

So now that I explained the metaphor to you, let me explain the state of my house. How it's been, and how it is now:

My house was built on a grave yard, in a "bad side of town" where drug dealers, pimps and thieves run rampant. My house floods, and was made with shitty materials. I have ghosts that haunt me. My house's fuse box is wired funny, and the fuses have been blowing (and I mean all of them) my entire life. People try to break in and steal my shit. I don't have much, but they try to anyhow. They try to break in and when they cant just take the shit, they sit in my living room and play with my Xbox, get drunk, trash the place and leave. They use my energy to power my stuff, but I don't get to touch it. Sometimes I snap once the fuse box has taken too much, and I kick their sorry asses out, or I beat them to a pulp.

Even though they were gone, the fuse box has never fully recovered. I was always low on fuses and I chose to keep putting pennies in. I didn't want to be a numb zombie. I wanted to feel, but the problem is I feel too much. So lots of energy is expelled all the time to keep myself open to emotion and the slim chance of happiness and friendship/family. And with the faulty wiring in my house, the way people abused my space, the way I am always low on fuses (I never seem to have enough money to buy my own, everything costs something), it's not easy to heat my house or run appliances. Sometimes I have to unplug everything. Sometimes, I get mercies and people come over to my house (once I let them in, I find it hard to trust now) and offer a fuse. I don't ask were it comes from. I just take it as a gift it is and thank them. My hope is the gift is given without strings. (Sometimes it's not and that hurts too) I'll even let them use my Xbox once the fuse is in, because why not share the precious energy they have given me? I am all about offering whatever small graces I can to those who are good to me, as long as my kindness isn't abused.

This is how I live my life. Sometimes I try to fix the wiring in my fuse box, but I am not an electrician. I can read books all I want and go to all the counselors in the world, but in the end, my Fuse Box is what it is. Some things might be re-wired, or I might have a period of all fuses lit, but in the end I am different. My experiences and my soul is just different. My needs are just different. I will never be like the other houses around me, or the people who lovingly visit.

And right now, my Fuse Box is on the fritz. Someone I thought was a friend turned out to be an invader and used my Xbox without asking me, while I have too many things plugged into the circuit sucking my energy. It's not a right to be in my space, it's a privilege. Just as it is if I am allowed into yours. But because I let her in once, she figured it was an open invite, when it's not. She didn't consider my house has some rules set in because I need to protect myself. Like for example: Every damn time I want people to ask to be let in, because I have been abused. Pretend your a vampire if it helps you remember. And I have that right. It's my life and my house. Don't just assume you get a free pass to my inner world. Only Bear does. And he fucking earned it.

So now I am left with a mess to clean and a broken fuse box. I'm staring at all the fuses blown, all the pennies in there trying to keep it together going, "I haven't been this fucked up since I left home the first time." And I am staring at the door. Very intently. I am my mother's child, as much as I hate it. Her specter is always with me, even on the days I ignore it. I have similar instabilities I probably inherited from her that I fight constantly throughout my life. Right now, I am staring at the door. I see the storm outside, and for this moment, it's a siren song. "Just end it. End the pain. Come to me. I will blanket you in my embrace. No one will ever hurt you again. Peace is here in the white."

I stare at my fuse box, the one I've tried so very hard to fix, and cry.

I stare at my thin little sheet, the one that does shit-all for me but it was all I could afford to deliver in, and cry.

I need more fuses than I can afford. I can't get them on my own.

These are my interpretations of Bear's words, but the essence is the same. And after he explained this to me, he said to me in the most heart wrenching voice I have ever head him use, "Please Baby, I beg you, don't go outside."

sighs

Words cannot convey the pain I feel, or the love I have for that man. He gave me a fuse in that moment. A small one, but it was enough. Enough to put it in my fucked up Fuse Box to carry on for a little bit longer. Enough to turn away from the door.

I'm not better. Not by a long shot. And though I have turned away, the winter outside still calls to me. My mother's face in her coffin is haunting me like a vivid mirage.

Maybe one day, my fuse box will stop exploding. Maybe one day, I'll have enough fuses, and I can share my house with my husband. He's already got a key, and pretty much makes himself at home here anyhow.

Maybe one day. Just not today.

My heart Is A Wasteland

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.

Fuck you my graceless heart.

Creating My Life

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

Pain Journal: Calloused Heart

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.

Tonight, I endure.

Self Care and Constant Fighting

"I dont need you to save me..."

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...

I am enough.

Pain Management: Thankfulness

I have learned much since being diagnosed with both mental and physical ailments. I have had some hard, painful lessons, and some inspiring ones. I know I have become stronger, in a way I always wanted to be but couldn't. It's hard to be truly strong when you are out of control of your own life. I honor and respect old me for trying to do it all alone, but that version of me wasn't ready to heal and move on. Riding out a bipolar swing is like trying to ride a stallion horse. It's near to impossible. But I tried, and though I failed many times, I still managed to do better than when I was on the streets or living at home in the "crack house."

But my many experiences, especially this year, have shown me I do have real strength. Not just toughness and pride. I came out of a traumatic spiral and I am still me. In fact, I think I am a better me. I went through hell in that hospital, and for a bit I lashed out because of it. The people who understood just how difficult it was for me to find a new normal, stuck around. Those who didn't...well, they couldn't understand. You have have a full blown psychotic break to understand what I went through earlier this year. I forgive them. And I know I don't need them for the future.

Most of all I forgive myself. How was I expected to be able to handle emotional storms when I just got on medication for a life-long mental illness I didn't know I had? How was I expected to be the Kweeny they loved when they were now different to my eyes? Plus, I was facing my own demons down. Every hospital visit, every therapy session, every time someone told me, "Don't stop taking your pills." On top of all this, I was trying to figure out why I was in so much pain and what was wrong with me. And I was struggling with doctors who didn't believe me, people I had to fight with to get to see a specialist who DID diagnose me. I had lot on my plate. And somehow I came out of it more whole than I have ever been.

I am truly thankful that chronic illness and metal illness forced me to learn to cope better. I don't sweat the small stuff now. If I have a flare up either emotionally or physically, I use my new support network. I talk to my husband. Somehow we are even closer still, because we are aware of each others issues more. He is amazing and cares for me daily. I in turn, do the same. Hell, he's seen me on bad days still attempt to feed him, because it means a lot to me to do so. It's my way of thanking him daily. 

But learning how to self care has been a hard but rewarding experience. I am getting better, everyday with coping. I know pain is a constant in my life, but I try to limit how much power pain has over me. I do whatever I need to so I can find my calm in the storm. I have even started doing things I consider "comforts" more. For example: I have a stack of tea. I love tea, but I never really make it for myself. I just horde it in my cupboard like it will not be replenished otherwise. This is a negative mindset for me. Tea reminds me of my grandfather. We had tea all the time at his house, and I miss him terribly. I think I was hoarding the tea because I thought if it was gone, he would be gone too.

Now I make tea for myself almost daily. Especially teas friends have given me. I smell it, I savor those beautiful moments with my friend and my grandpa, and I honor myself by drinking it.

It's a little thing, but it helps.

I am moving into a new stage in my life. I can feel it. I am super appreciative of the moments I can share with my friends and packmates. Every moment is precious now. Also, I am more mellow than I have ever been, and I am more at peace. There are still things that haunt me, as some shadows linger longer than others, but I am strong enough to say I need help when they appear. I am the warrior of my own heart. Because sometimes, you need to take up the sword and do your own cutting.

Pain Journal: Mental Illness and Chronic Pain

Being Bipolar and suffering from Chronic Pain is like living life on Hard Mode. In video games, I actually tend to avoid Hard Mode, because I get super frustrated. I play my video games much more carefully than I play the game of life.

It's been this way since I was a child. As far back as I can remember, I have time and time again encountered Hard Mode. It reminds me of a piece I wrote for creative writing class in college. We were supposed to write about our earliest memory. A lot of the students in my class wrote lovely things, like the taste of their first ice cream cone, playing with their families, innocent things like that.
Mine was different.

My first memory is of blood in my mouth from my mother punching me in the face.

If I am honest with myself, I have been in pain ever since that day. I just didn't think my body would betray me like my mind clearly did. I had convinced myself I was unstoppable.

I have to take a small but substantial amount of drugs. Every day. No exception. And because of the side effects, I can't do things like drink booze anymore. And I enjoyed drinking. Sure, I wasn't really a big drinker, but I liked having the option. I really, really hate when my options are narrowed and it wasn't done by my choosing. One thing people don't realize about me is how much of a control freak I really am. It became more evident once I went on the lithium and seraquoil. I started to realize how much I need to control the world around me. Even more so now that I have to manage pain. Being a control freak doesn't mean you are good at it though. I do not feel I am good at keeping my cool, or organizing things. I can't remember things I did maybe an hour ago, but I remember what my first taste of blood in my mouth feels like. I remember horrible things. Lots of them. If I tried to write a novel about my life, I don't think I can make myself into a convincing character.

No one would believe the shit I've been though.

The drugs however, have a side effect that isn't written on the label. It's one that is specific to me, because of my mental and physical ailments. Lithium numbs me. Because it soothes my mind and makes it so I am more able to be the control freak I didn't know was in me, I feel my pain from Fibro and Reynauds more clearly. Which means everything hurts more, and I can't react therapeutically to the pain.

Like for example, last night I had a hard talk about my mother and her suicide with my husband. I had a realization that maybe my mother was just done with trying to fight. I've had many theories over the years as to what drove her over the edge. It seems to be fresh in my mind lately because of my stint in the mental hospital. I really felt like dying at one point during my breakdown. I even wrote a note. To the average onlooker, it was a suicide note. To me, it was a good bye note because I thought the pain my body would kill me.

My theory about my mom this time was that she was just finished. She hurt too much. She just wanted to not hurt anymore. I knew she suffered from a chronic affliction, because the autopsy on her body showed growth on her spine. I always thought the quack doctor she went to was filling her head with shit to give her more pills and cut her up. She had scars all over her body from this butcher. I was convinced he was making her "feel" sick.
But she was sick. Badly.

I don't make excuses when I say these things about her. I wont tell you in some romantic way that my mother was suffering so it's okay what she did. I'm not a fool. She was an abusive, conniving bitch and nothing could change that. I know because I have experienced both pain and madness in equal measure, and it pushed me over the edge a few times.

I'm still haunted by my experience in Feb. The smell of hospitals, the constant needles. The bad drug reactions that made me trapped in my body, or completely flip my lid. Watching the clock while I writhed in agony. The stripping me down to a basic, broken thing when they locked me in the drunk tank. Watching my Reynauds flare up and loosing complete sensation in my toes and fingertips. The scalding hot showers that I couldn't control to give me a temperature that wont flare me up. The paper gowns. Cold floors and colder nurses. So many coloring books as my only solace while the other crazy folks scream and thrash themselves against the walls. Writing mean letters to people I thought did me wrong in calk in the small veranda.

I faced my mother's ghost in there in a way I have never done before. There was no pretty ritual to make it easier to swallow, no this wasn't the pretty way of facing demons. I went nuts and there she was, riding my skin. Right beside all my alters. Us and her.

I realized then if I didn't do something, I would never come back as Kweeny. I wasn't going to go down like that. Not for anyone, especially that bitch who birthed me.

So now I do this balancing act, every day, to be sane, whole, and in as little pain as I can possibly find. I take my pills, not because I like them, and not because I am brainwashed to do so by asshole doctors. I -know- I need them. They give me control back. I just loose some sensations in the process. Because nothing comes without a price.

And my ability to cry, wail and scream at the moon is now limited. My libido is gone, making me asexual, which is the weirdest shit to me. But maybe I need other things more right now. Like true intimacy, comfort and support. Maybe having my emotions dialed down is exactly what I need. My limits make other things stronger.

And maybe, this is the way things should be.

On Swords in the Snow and Writing

I have many friends in Canada I still keep in contact with. Some friendships can survive distance, which I am grateful for. One such friendship is with my Big Sister Marcy. She is one of the few people I call Big Sister, because I tend to be the Older Sister. I'm an old soul, and I am in my mid 30's. So I tend to hang around a lot of young folk who look up to me.

I look up to Marcy though. She's a strong bitch who survived a lot of shit. We both came from hard backgrounds, we both got raised in the same city (and know what The Hammer means), and we even know some of the same folks from that place. But she's survived some really frightening things, like being in New Orleans when Hurricane Katrina happened. She's a fucking bad ass, because she managed to live through it and come home to tell the tale.

We have started a new project together that I am stoked about. My first time co-writing with her! It's going to be awesome. I can't say much more as we are still in the brainstorming stage, but it is going to be awesome. I am glad to be doing some creative with my Big Sis!

She showed me some amazing pictures she did sitting in the snow with her blade. She looks like a warrior Queen. A true, fierce powerful force, cutting through the elements. She told me she had a mantra in her head as she did the photos, "Make pain bend." I found this extremely powerful. Make Pain Bend. You can't erase it. You can't go back in time to when it wasn't there. It is here, in the now, and you can live with it. Bend the pain. Not yourself. Yes.

This is the battle one has with Invisible Chronic Illness. The battle of making pain bend. Of being alive with the pain. It is a struggle. Every day the pain takes more and more of your time, your sense of self, your ability to get up and fight. Just bend it. As much as you can.

She told me she thought of me while sitting out in the snow, which was a great honor to me. She knows how hard things have been. That my Raynauds and Fibro are making life suck. I have to take meds just to be somewhat functional right now, and I couldn't sit out in the cold holding a blade which would feel like getting ice-burned if I touched it. The weather would literally suck the heat from my body and I would go into spasms. Her strength was inspiring. She once couldn't climb a wall because her Fibro was so bad, and I recently saw her do this. She climbed a mother fucking wall right to the top, like a true bad ass. This is strength to me. She makes the pain bend. She doesn't let it dictate her life.

Bad Ass!

I wrote to her today, "I keep trying though. I face what I am now with all the invisible BS people can't see. I face my Bipolar, my PTSD...all of it. I need to be on pills to be sane, and pain meds to sometimes just get out of bed. I stare at stacks of med bills, knowing if I was in Canada things would be different. Did I know one day I would move? Yes. When I fell for Bear I knew. I knew I wasn't wealthy enough to support him, and I had no family to turn to for sponsorship. I got chewed out for my choice to leave, without people truly understanding why.

I'd honestly be dead without my husband. When I had my mental breakdown I was a danger to myself. Three times I was wheeled out on a stretcher, for my safety. Bear saved me from myself as much as he could.
I feel a bit emotional seeing you in the snow like that. I think it is pretty bad ass too honestly. Squinting or not, you look fierce. Canadian girls kick ass!"

Battle On...

Thank you to all my Canadian friends who understand and still wish to keep me in your life. I love you all and miss home greatly.

The Ups/Downs of a Chronic Werewolf

My husband shared an interesting observation on what he thinks Bipolar might feel like in a depressive episode.

"Have you ever lost a loved one? You know that deep, devastating soul-crushing pain that comes with that? Imagine you have that for no reason, all the time."

Well fucking said.

We watched a documentary together called, "Up/Down" which is something people who live with Bipolar and people who want to understand the condition should watch. I have been diagnosed with Bipolar 1. I had severe mania, and I was hospitalized three times because I could not stop spiraling when the meds wore off. Drugs induced a very scary episode, but I was Bipolar for years before this. I just was trying to handle it myself, and after my mother killed herself, I don't think I had ever been the same. I think I should have gotten help then, but I refused, because I am a strong willed person. I didn't want to be like my mother. She was mentally ill, and self medicated with many drugs. She got worse and worse, and I had to run away from home for my own safety. Being in her house with her growing up was a horror show. If she wasn't beating the living crap out of me, I was being raped by strangers in her house. She sold drugs on the side, and while she made lots of money, it all went back into her drugs. I grew up surrounded by crazy, I figured I could handle my own shit better than that.

But I couldn't. For years I have been struggling with many ailments. I am in chronic pain, mentally and physically. My years of struggling with conditions I hadn't wanted to deal with has worn on me. People don't realize how hard it is to live with all these things. I was touched while I slept so for years I couldn't sleep with anyone, and that includes myself. When the mania hits I used it to create art and tried desperately to make it worth something.

But I can't do that anymore. I'm as stable as I have ever been in my life. I still get moments, and my chronic pain is still very strong. At least now I don't have too many paranoid moments, I don't live in fear of the world all the time, and I can even sleep most nights. And now I know the difference between having a manic moment and having a flare up from pain. Because in the past, my mania would trigger flare ups of pain that I honestly felt like I was dying it hurt so badly. I was hospitalized once because I wrote a note in fear of dying, and they thought it was a suicide note. But I have been suicidal in the past. Many times.

I think when people hear you have conditions like Bipolar, you find out who your real friends and loved ones are. Sometimes people who said they were pack and will love you forever, leave. They can't handle being around you. Because it is a hard condition to live with, for both the person afflicted and the people in their life. People can walk away from the person in the episode, but the bipolar person CAN'T. We have to endure it, and ride it out. It reveals some scary parts of the person afflicted, and I can't remember things, and what I do remember is horrible and nightmarish. But my Bipolar isn't ME. It is something I endure. Something that is added to the list of issues I have been carrying around my whole life. I do what I can to make my life better. I take responsibility for the actions I commit while having an episode, and I believe I am more than a list of ailments. When I was in therapy my therapist told me he knew I wanted better for myself. He saw it in how I described myself. I would tell people I was an artist, a writer, an aspiring filmmaker. I told people I painted bones and such, and would give them my business card and show them pictures. THEN I talked about my issues. It gave him hope, because he knew I wasn't letting myself be defined by my illnesses. I wasn't ignoring them, because that is not helpful either, but I refuse to be only Chronic Illness.

The Highs and Lows have prices, and I am not willing to pay them anymore.

If you are curious about the documentary that spurred this can be found here. I want people to learn what this condition is really about. There is a lack of understanding and fear of the unknown. I am lucky I have some supportive people, but I still have faced stigma.

Kweeny's Thoughts on Graduation Day

Not sure how I feel about the concept of Graduating from my therapy program. It was never meant to be a long lasting thing. And I won't lie, some days have been really hard. Talking in a group situation is different than one on one, because people can do all sorts of things. Like interrupt you in the middle of you sharing your "check in". We check in everyday so everyone is updated on how the group feels. Lately, I haven't had much to complain about. Which is good, but makes checking in feel tedious. Because I really don't have anything I would deem worth calling problems. My other group members have problems. Sometimes big ones. And then it comes to me and all I can complain about is medical bills, my sleep issues, and how tired and sore I am.

I am sore everyday. That is how Fibro works. When it is cold, the Raynauds joins in to make things harder. That is my life. On my check in sheet have I taken to writing my pain levels under the mood level, because I find it offensive there isn't an option for that. I am tired of people focusing all their attentions on my brain, and not enough attention to pain management. I talk about my pain as much as anything else, maybe more so. Because it is more constant than my mania. I haven't felt manic since I came out of the hospital.

And I am on a lot of meds. More than I have ever been in my life. I know I could be on more, and I am grateful I don't have to be. I am worried if I tell my psychiatrist next week about my sleep issues he will suggest more medication. I don't want to live in a drug fueled haze my whole life. I know right now I am way better than I was. I am actually functioning like a mostly-sane person. I am calmer, still retaining my personality, funny, and actually considered CHILL by people who only met me after the meds. This makes me laugh every time I hear it. Or when my therapist calls me his "Meditation Queen."

I'm totally zen motherfuckers!

To be honest, half the time I fall asleep. My therapist tells me it's okay, but I do much better when I have slept enough the night before. Sleeping is still not easy, though I do sleep better now than I ever did. I feel kinda weird to even complain about the sleep issues considering how bad things have been. All and all, I'm doing okay at therapy, and soon it will be done. Soon I will have to figure out what I am doing next, and add to my to-do list shopping around for a personal therapist as well as a new GP.

Progress is great, but it is also pretty frightening. Because the unknown can be daunting.

Being Bipolar Is Kinda Like Being A Wolf...

People fear wolves. For decades they have been hunted under the guise of misinformation. People also instantly assume crap about you when you are Bipolar too. I guess I really am the Chronic Werewolf.

Time to get my Wolfie on...

*cracks knuckles and growls*

Out of all the mental illnesses you could get, Bipolar is one of the few that has the most misinformation and causes the most bullshit, condescending responses from people who claim they wanna help. Seriously, no one even hears my other conditions sometimes if they hear the Bipolar one first. It's so bad I have taken to listing it LAST when I tell people about my conditions, so they hear ALL THE OTHER SHIT I live with daily first.

It matters guys. It matters deeply to me.

I have PTSD, Fibromyalgia, Raynauds Syndrome, Chronic Fatigue, DID and yes, Bipolar Disorder.

Did I just get a chronic pain bingo?

My husband's ever-so-thoughtful relative for example, sent him a ton of links about Bipolar and loving a Bipolar person under the guise of "helping." She probably really thought what she was doing was helpful. She probably figured that because she had a grandson who has it, she KNOWS now how bad it is. Because he and I are totally the same people dealing with the same chronic afflictions...

*rubs temples*

You know what helps someone who is suffering from Bipolar? When you don't think reading a few articles will give you an insight into how a person lives with a spouse like us. Or how about treating people who have Bipolar with dignity and respect, instead of assuming a bunch of shit from articles you read! Or how about just realizing I am dealing with MORE than one SUPER SCARY condition, so I am not like every other Bipolar person in the world! Treating me like I am a diseased creature who should be locked up on full moons is actually not that helpful. Though it would make a sexy photo shoot to have me locked up behind bars growling as I rip my shirt off...

Cages only work on a temporary basis anyhow.

Sadly, in real life, that isn't how it works.

So if I can ask one thing from family and friends, it's to not assume anything about my life and afflictions. Come talk to me directly about my chronic shit. I would be more than happy to have a conversation about it, especially if you are actually concerned and want to learn. I am very good a discerning true compassion, from people having agendas. Also, sending links is all well and good, but don't pretend you care when really you are coming from a place of misinformation and fear. I know the difference. I am a Chronic Werewolf, it's true, but I am fucking working hard daily to deal with my shit. I have multiple medical bills to prove it.

And until you are ready to pay one of those bills, you can shut the fuck up about my conditions.

(Unless you are willing to make a sexy werewolf-cage-photo-shoot. Then, I am ready to talk.)

/mic drop