Today was a pretty good day. I was exhausted and sore, but not to a point that it's hard for me to function at all. So I enjoyed it. Not only that, I got to spend time with one of my good friends who is moving to Seattle. Seems like a lot of my true friends keep moving away lately, which is hard but I get it. Change happens. I'm glad that this change is a good one for my friends, because I ultimately want the best for the people I love. I won't lie and say I am not sad to see people go.
We talked about my health a little, and I have had a long hard road. Where I am now is better than where I was in Feb, but it hasn't been easy. I have my medications for my brain and medications for my body, and so many different kinds of medical professionals. All of this has been overwhelming and I have had to learn new coping mechanisms. I have come a long way.
I hate living with constant pain. I hate not completely trusting my mind. I have a list of complaints, but at least things are slowly getting better. They had to get worse before they got better, but in the end things are adjusting. A lot of what I do to cope is adjusting.
My husband and I have been really busy in the last few weeks too, so we are trying to slowly unwind. I don't function on the same energy levels as most people around me, so I need to take down time to recover if I push myself. It's like my energy bar is always at half, while others get a good nights sleep and wake up with a full bar. It sucks, but I learn to adjust to that as well.
At least despite all the pressures lately, things have been good between my hubby and I. I am always thankful for that. I have an amazing relationship and I know it. I am proud of it. We've been through a lot together and have come a long way. A really fucking long way. With border crossings and everything.
Now I think I will rest up and watch some silly shit with my husband. One of my favorite distractions.
These chronic wolf-woman observations are brought to you by the song Comfortably Numb.
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It's getting easier to tolerate all the medications I need to just reach half of normal functioning power. I feel like I am constantly an outdated, broken down, model of a creature called Kweeny. Some wacko that was lovable. A person who used to maintain relationships in a healthy way. Someone people once referred to kindly as Kweenybeast. People respected hir. They knew ze was nuts but for some reason, weren't afraid. They didn't leave. They didn't drop hir like a hot rock the moment she flipped out. It didn't matter she was insane. She was still welcomed to the group and made to feel a part of it.
I'm on pills to regulate my "imbalances" in the brain. No one knows the terrors I have seen in my life, right up to this year. Being locked against your will, screeching like a banshee to be let out. No one caring that though your mind is shattered, your body is too, and it's flaring up right now due to stress. I really do feel like a ghost these days. A Ghost trying to remember who ze was.
It's hard to sleep still. My body is getting used to the drugs. The same drugs people constantly tell me to NEVER STOP TAKING, as if I do I might revert to my crazier self and do unspeakable things! It's cool, don't worry reader. I won't stop taking them. You don't have to deal with me at full strength anymore. You don't have to deal with me at all if you don't want to.
And unlike before, I won't be broken when you leave.
Thank you meds. Thank you for taking a lot of my fucks away.
Being bipolar is like having waaay to many feelings all at once, all the time. On a high swing, things are fucking amazing! It could be anything from eating cake, to your wedding day. They will be about the same fucking awesomeness, and it will feel really good.
The down swings though...
Let's just say I have stared my death in the face more times than a person should.
Some of my pills I take are for that. For the bipolar/emotional crap. And I should never stop taking them. EVER, EVER...or else I turn into a werewolf and eat the world.
Some of my drugs are for pain. I take a combo of things for pain, because pain is one of the few constants in my life. I can depend on pain. It won't leave me know matter how much I cry and beg. I am done judging myself for my drugs. I have to take these things and that's that. I want to make things, go places, see the world outside my house. I want my skin to not hurt in sunlight or shade, I want to dance without costing myself spoons for tomorrow. I want to go to a convention and not sleep though half of it because I hurt too much.
Always because I hurt too much.
I know I have to be careful with this path, because my mother was a pill-popper. She smoked things, but mostly she loved pills. She got whatever she wanted from her quack doc. I watched him as a child giving her drugs, handing her packages of pills. It's been hard for me to adjust to this life. This strange sort of half-life I maintain with medication. I'm trying to teach myself to call it that, to not always refer to it as drugs. Not because they aren't drugs, but because I need a better way to look at the situation. So I don't allow people to treat me like her.
If I ask for medication, it's because I fucking need it. I don't do it for a lark or to get high. A lot of the stuff I take I can't get high off of anyhow. I don't do drugs. I medicate. I am trying to be a better me, even if that me has lost her sexdrive and has become numb.
When she opened her eyes, it was all
around her. Clinging to her spirit like quicksand. She felt like
everyday she was sinking. Everyday, she was carrying a stone around
her neck. Or sometimes it was the shoulders. Or maybe it's actually
in her tail bone...
Pain, it was a part of everything now.
From the very tips of her toes to the top of her head. It controlled
the temperatures in her body, or when she felt pins in her skin,
crawling up and down her body like bugs, or how every morning her
back ceases and she has to painfully stretch to try and unlock it,
pain controlled it all. A pain she was told wasn't real enough to
matter. She won't die from this. That would be too easy. No, a
creature such as she is made for suffering, not for living. That is
the curse of the change.
She no longer had the moon to blame.
Because this werewolf was born a wolf, the human part of the wolf
came later. She was raised by werewolves. They were just like her,
fighting with inner demons that life conjures up. The problem was,
they hurt each other, and so they fed their demon-wolf selves.
Feeding the dark wolf. Becoming something more.
The struggle inside is excruciating,
and manifests itself on the outside.
Such a simple phrase. But somehow hearing a pain management specialist say it makes it more real. Even wrote it on a piece of paper. I showed my husband the moment he came through the door.
It's real. I'm not just a crazy person. I'm crazy and in real pain.
I told the doctor about my pain and he listened. Really listened! About the nights I don't sleep. About how when I am manic I can cause a flare up because I do crazy things and push myself. He did the point test. And he told me what was wrong with me.
He diagnosed me.
There is a part of me that is darkly laughing. Not sure if it's an actual laugh or something twisted. Because I don't WANT this to be real. I am fucking tired of having issues with my body! I am beyond happy, so I know this dark laugh isn't full of joy. Because answers aren't comforting. My emotions are turbulent. Laugh like a madman and howl at the moon.
I think I might break down and cry later on. When no one is around to hear it. Because I can't take people's eyes right now. Don't want to burden my husband with my shitty emotions. Everything hurts right down to the core of me.
To the fucking quick.
My mother's laughter fills my head too. Her evil bitch laugh. Such mockery and vengeance in her laughter. She did curse me. Thinking of her makes me rage. Because sometimes, even when you win, you loose.
I haven't won anything gang. But at least I have an answer.
I've been a really moody bitch all week, and despite myself, I have set parts of my life on fire and salted the earth. It was an extreme reaction from me, and I realized my bipolar is flaring up right now. Despite the meds. Lots of stressors are pulling at me to help with the flares I am having physically and mentally, and when I saw what tomorrow was going to be, my mood the last few days has made perfect sense.
Tomorrow is the anniversary of my mother's suicide. And I am wondering which part of me is deciding this year it's going to hurt. I mean, I always remember the day they found her, not the day they buried her. I sometimes even get the months mixed up. Some years I pretend nothing happened, others I flip out and lock myself away. I'm so messed up I can't even grieve about my mother like a stable person.
But I do grieve. And I always will.
You never get over a suicide. Especially since she was one of my main abusers growing up. Growing up with her taught me you had to scream to be heard, you had to fight to make the pain stop, and you can't trust anyone. Family is a comforting delusion other people get to have. No one will take care of you but yourself. And if I stayed in her house for too long, I'd become an addict and a monster too.
My mother was 41 when she died. She had enough drugs in her to kill an elephant when they found her dead in her hotel room. She did it in a place I had fond memories of before the incident, Niagara Falls. I used to love watching the rushing water. Forces of nature are amazing to me. I recall Houdini went over the Falls in a barrel once. I try to focus on that now.
I have speculated why she did it several times, but I honestly will never get that answer. It's just another mystery, like so many things in my life, that most people don't have to deal with. And the thing that really makes grief about my mother hard is that there are no real good times to fall back on. I have a memory here or there, but I can tell you they would fit on less than 5 fingers if we counted them. Which is a sad, horrible state of affairs. My mother was not a happy person, was untreated for all sorts of mental disorders, and was usually on more drugs than she needed. I'm sure she was probably trying to self medicate, because there was shit wrong inside her body as well as her mind. When they did the autopsy on her, they found growth on her bones. She used to try to scare me and tell me, "One day Kweeny, your body will betray you too. You'll get sick like I am. And your life will be all pain."
She wasn't right often, but when she was...
When I broke my tailbone it felt like my mother's curse had come full circle. Like I couldn't escape a life of pain and madness. And when I went into the hospital this year, it shattered me. I have had a hard time returning to my core self since. I wake up in drug hazes, I go to sleep in drug hazes. I have cold sweats and nightmares. I wake up in horrible pain that makes me grit my teeth every morning. I am a pariah to some, to others, just a moment in time. I still have bipolar swings, and I am not happy with how I am coping.
So I am not okay this year.
A friend suggested I draw, but my pain about my mom might make that actually physically too much for me to bear. My mother never supported my creative pursuits. I told her I wanted to be in a band, she laughed at me and told me I was too ugly. When I drew things for her, she would only point out their flaws and tell me to quit trying...
Sometimes she literally beat the dreams out of me.
But I am going to try finishing my painting I started the other night. Even if the voices are really loud tonight and my pain is really intense. I will see how far I can get before I just cant do it anymore. The painting is emotionally relevant to what I am dealing with right now.
I'm not sure there is a point to writing to the dead, but I am going to do it anyhow. For me. Because I don't live in your shadow anymore. I do this right after taking a handful of medication, PRESCRIBED TO ME BY A DOCTOR, for all the messed up shit my genes carry. I still remember the day you cursed me, and how I shrugged it off as just another asshole thing you said while high...
"One day, you are going to hurt the way I do."
For once, you actually were telling the truth. Like you, I have mental illness. Like you, I have physical ones too. Ones I thought you were lying about, because more then half the time you DID lie about your problems. How many days did you sit my sister and I down on the end of your bed and tell us you were going to die? You had it all figured out too, like death was something you just circled on a questionnaire. Today I choose Death. Check mark. Simple as that.
I know better now. I know the horror and despair of death. I know the helplessness and the fear. I know all the terrible and even beautiful parts of death. I think about death and my relationship with it every time I process bones for art. I think about it every time I walk through a grave yard. I know how close it is. But I also know that choosing death isn't as simple as a check mark.
You just made it sound that way.
My pill jar isn't a 20 sided, spinning container of Russian roulette. It has my day and nighttime pills marked off, and that's it. I could barely handle looking at my pill jar when I first got it, because it reminded me of you. Watching you spin your pill jar until you got the section you wanted, and see you dump a pile of pills into your hand then into your mouth. Dry. Like a fucking pro. You did this several times a day. You were courting death, and it wasn't romantic. There was no beauty in what you did. And it was the same action you pulled when they took you to Niagara Falls. My sister and Grandmother didn't know you were done with life, and sadly, my Grandmother didn't care. You were done. You didn't want to try, didn't want a second chance, and sure as hell didn't want to ever give my sister or I the chance to be your family.
So now I have to carry around the shadows of all that transpired between us. All the things left unsaid. All the bullshit and lies, and all the abuse you refused to knowledge happening under your roof. I went fucking mad recently and no one really blamed me. Anyone close to me knows what I have endured. Knows about the "drug house" and the life you cultivated for my sister and I. How I protected her many times from predators. How I can't even sleep at night like a normal person because people raped and beat me when I was vulnerable at night. The beatings sometimes were from you. You were terrifying when high. You switched personalities, and the one I knew as my mother would be replaced by a vicious beast. The beast wasn't human. It lived on fear. It would punch me in the back, shake me awake and threaten me so I wouldn't want to fall asleep. And if you weren't beating me...I still get upset if someone walks past my bedroom door when I am in bed. I have a roommate who gets up at all hours, and he wakes me up constantly just by walking past my door. I can't seem to shut it off. Every time I freak out a little.
I am 34 years old, and I need pills to sleep. I need anti-psychotics, I need pain medication. I cannot function without these things. Because people touched me. People raped me. People beat the fuck out of me...in YOUR house. A child is supposed to be safe in their house. A child should be able to trust their mother.
I had no mother.
This only touches the surface of what I endured. And you are gone now, so nothing I say here will reach your ears. But I needed to write this. For me. For the child I was. Because little Kweeny was a creative, and beautiful soul. She grew up hard and fast, and never got to play, so damn it, I play now. She had to learn most things on her own. She made mistakes, because she was a tough little shit who didn't trust easily. She still doesn't. But she's better now. She is loved and has a huge pack of friends in her life, and she doesn't need you anymore. She's free now.
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.
