On Bended Knee (Trigger Warning)

Something that I think most able bodied people take for granted is motion. After all they may get sore muscles the next day but, a little sleep and they have this thing called energy (huh? What’s that?) and their sore usually goes away. They may also need a massage or just secretly want an excuse for one.My body is not made for movement. From a professional dancer/ Model this seems a bit funny to say.

It sounds vain as hell but I was VERY good at the dancing I did. I also had to work at it twice as hard as those around me and started dancing tired. I thought this was normal. Being raised to never question the whys of things, I had just begun. After all if you ask why and are going to be forced into prostitution or homelessness or both? It’s just not worth it to question things. I remember my first audition. I am not a formally trained dancer. I watched people and mimicked. The person who watched us commented on my stiffness. I had to learn to relax my body and flow.

I never actually did this. I learned how to create the illusion of relaxation. For as long as I can remember relaxing causes intensive pain. I remember trying to not cry out, because tears meant my father would come and beat us until we couldn’t cry. The first memory that comes to mind is last night, my mental chronology is working backwards. So the last one is when I was three. I have my most clear childhood memories at three. Three predates the “worst” abuses and post dates a lot of trying to learn mobility and the basic survival skills of living with someone who wanted to murder you for existing.

I had been carrying something heavy, something no one else seemed to ache with when they did. The thought memories are vague pictures of milk jugs and boxes. I was so tired that the sun was still up and I could hear my siblings playing but I just needed to lay down. I crawled under the bed with my dog friend Muttlee and tried to get comfortable.

Why under the bed? If I was caught sleeping then I would be hurt worse. I remember the dog friend shifting and making room for my small body. She licked my face and I squeaked at her, as I still squeak at Sprite when I lay down on my bed and she wants attention or wants to help me feel better but I am in that realm of suffocating pain. They both back down and don’t leave me.

I take a deep breath, and it hurts. I lay flat, and stare at the underside of my mattress, the dimmed light of my small space comforting. I hadn’t been tortured with the wool blankets in summer in the closet yet. Small spaces were my friend because HE couldn’t find me. What strikes me most about this memory is I start trying to relax. I even remember why. My Aunt Nan had been talking to my mother about how important this Relax thing was and how it was a letting go.

I started at my toes and let the muscles go. By the time I got to my knees I was in tears. I didn’t stop. I relaxed all my muscles consciously. The little pains (okay really horrible bad pains) that I have felt my entire life upon laying down? This beat them. I screamed. The dog growled and bit me in fear. Even the dog knew to not make sounds. A part of me always believed she was taking the fall for me. My muscles unlaxed and I climbed out from under the bed bleeding, afraid, and aware that there was a precipice of pain that even my father could not inflict.

This lead to my first time running away, while toting a boulder. This lead to my ability to survive in some ways. Most of the memories I  have of torture, such as my punishment for screaming itself I remember thinking “This hurts and I want to cry but you can’t hurt me as badly as I can.” I didn’t know what it meant for a long time. The pain in the relaxation memory was so bad that it was pushed away. My subconscious never let it go and I didn’t try to relax again until I was a dancer and hurt so badly after working that I went for a massage.

I know torture first hand. A lot of the time people make jokes about torture, not necessarily in the Guantanimo Bay sort of way, but often yes. I have been waterboarded. Usually if the toilet wasn’t flushed my father would waterboard his own children. He was the one who didn’t flush it. One of us would eventually take credit, and there would be blood. Now a toilet that is not pristine can send me into panic where I feel like I am drowning.

I have had my toenails torn out. Flat nose pliers work better than needle nose for that. I may someday take a picture of my feet. My toes, if I am not standing, curl inward because of the years of infection and damage to the muscles. The pain  in my feet from dancing? It wasn’t real pain as far as I knew. Real pain was what daddy did.

Most of the scars I should have don’t show now that I avoid things that inflame or damage my skin. You can’t see the stab wounds. Most people when they see the strange little round scars don’t know those are bullet holes in my skin. When people joke about gangrene (I am not sure how that idea is funny) I usually tell them, “Uh that’s not funny. I’ve had gangrene four times.” The modern era of medicine saved my feet.

Oh I know pain. Right now the cold snow on this supposedly Spring day, or at least I think it is supposed to be Spring with a capitol S… the pain matches the moments when I pulled out my own toenails. You see, I thought that trimming my toenails was the same thing my father did.

This post is actually about motion however. All of these things have effected my ability to move. Disease, Disorder, Syndrome, Torture, Abuse, and mostly Pain. My pain is omnipresent. I have been in pain since birth. My pain effected my friendships, Schoolwork, and has effected every social interaction. In fact, my ability to walk would be greater if there wasn’t a pain issue.

The wheelchair assessment opened some cans of worms medically and mentally. The idea that I would use my feet when I can is no longer welcomed. I knew it was painful but the pain means don’t apparently. I have never really bent my knees except when dancing. In all my memories good and bad my knees don’t bend. My sister did and hers dislocated. My body is so much more flexible that in order to walk I tightened all my muscles and I heave my body forward pitching to one side.

Totter may be a word. I think of an object that is off balance on a table or something, it goes side to side before it either falls over or steadies itself again. It moves when it rocks. This is how I have walked for my entire life. The pain in my hips and their chronic dislocations has an answer. Walking. If you don’t use the joints properly they will be damaged.

I have little flicker memories, pictures with emotional impressions really, of learning to walk. Most of them come with terror. Anger. Rage. Pain. There it is again. Pain. I can hear my mother’s voice as she cries. “Come on, you can do it. Please walk? If you don’t walk soon he’ll hurt you.” This ignores that he already had hurt us both for years. Those same words can be put on many memories, my ability to talk was born out of terror, my ability to read chapter books like little women came at gun point. Basic milestones that I would probably have been more delayed on, I did them to survive.

I am left to wonder how any doctor could see me walk for my lifetime and not comment on it. Yes, when I was younger it was worse, then when I tried to blend in and during my time of Sports until the end of the Dancing phase I faked it  better, but if you only bend your knees when sitting or in bed because you are in the fetal position crying as you fold up like a rag doll… shouldn’t they notice?

I have been institutionalized, hospitalized, psychiatrized, and called the patient for so much of my life that sometimes that is the name I hear in my head. Why then is it a quest for a doctor to be attentive enough to take note that there is some greater wrong? Medicine cannot be something you treat like a retail job! Medicine must be treated like it is something where every moment can save a life.

I don’t hold my shoulders “right” either. I actually didn’t stand once for this physical therapy evaluation. I moved my legs while sitting and that was enough to startled this woman. Apparently people with my level of flexibility almost never learn to walk. My life time of shoes that even when the doctor’s cronies measure them they do not fit, my life time of aches that I thought everyone had until it was too late, my life time of falls, wobbling tiredness, and sheer frustration that I couldn’t be as fast as everyone else has answers.

Still, when every child I ever knew noticed I moved funny and I had nicknames from “The Robot” on to “Stiff Whore” on to “The Crunchbacked Hunchback”… when I was stigmatized and tormented until the moment of my first self awareness as Woman and often… so very often… after? Why the hell can a doctor not notice that I do not even bend my knees on their stupid tables. I have spent my life running, jumping, plieing, twisting, turning, walking, and shifting but never bending my knees without falling.

It actually takes a conscious thought to bend my knee even sitting. A part of this is life long and some is exaggerated by my spinal cord injury. It takes more than one try usually for the signals to get from my brain to my legs. Then it takes several tries for my body to make the movement happen. It’s a process. It has always taken more time for me to get my leg to go forward. I have to consciously imagine it.

The first time I made snow angels that I can recall, not the actual first time as there are flickers and age disparities in the collage of memory but the first time I think I wanted to do so was also the first time my body was good for something because of the stiffness. I had to walk to school in the snow. It was a snow delay, and I actually never made it there. Another random moment with a random stranger who by the standards of my family I guess I should have feared?

I had sat down on a rock outside some house and was crying because I hurt and had fallen. The trashman stopped. I wish I remembered his name. I asked, I didn’t call him the trashman but the memory is buried under so much rubble. This was the first time I was allowed out alone after my first time in an institution and I was screwing it up. I told him so. He didn’t react like I was a monster. My own mother has just begun to treat me as a person.

This man was a mexican. From Mexico. He and I talked about how his father and mother had brought him illegally across the border when he was a small child. He had legally applied for citizenship as an adult was was proud of it. His first winter, they had made snow angels to celebrate. They were too poor for anything else. He asked if I could make one and I burst into tears again, “I always screw them up.”

He asked how. I couldn’t make a snow angel without smudging the wings or body or leaving foot prints. He laughed, not at me but the laugh of an adult who cares. I don’t know why he cared. “See that big pile of snow? Go make a snow angel, I will help you get up without ruining it. At first I was crying while making the snow angel. The snow made it’s crunching sound, I made mine. He made a face when I did. My knees crunched, my hips popped, my shoulders ground. It didn’t hurt, it was just the sounds of motion. He asked if I was okay each time. I thought he was insane.

When my angel was satisfactorily angel like he said, “Bend your knees.” I did, then he said get up. I didn’t. I couldn’t. Instead of yelling at me, as I already expected he pondered the situation and said, “You know the problem with your angel is … where are her feet? Angels have feet and legs right?”So I put my legs out and rolled up until I had my feet. He helped me balance. I hopped away from the angel and my angel was perfect in my eyes. “For you, the perfect angel is going to always be the most unique.”

He had to get back to work, and I spent the rest of the day making snow angels. I have thought of that moment often, usually when winter induces pain levels that make me squeak and cry with every movement of my arms and hands. I am squeaking a lot right now. It stands out as one of those memories where adaptation occurred or I was treated as a person. Those were so very rare until I was 21. At the age of 21 I began to pursue what I wanted.

My dancing career was short. A year at most. I remember always worrying about making it through the next audition. Would I be strong enough? I remember throwing up from pain. I remember too just how cut throat the world of Dance can be. I don’t dance in my wheelchair. I can, I think, but I no longer need to dance. I need to simply allow my body the stillness it requires.

I will think about every time I have bent my knees, I have them bent right now, because this keeps me from falling off of my chair. I will think on every footstep and the pain. A part of me is angry at my mother over this. That part of me needs to heal. A part of me is afraid. A part of me rages at a dead man. Mostly however, I feel relief. I am never going to have to do the basic things that my ability level has never matched. I don’t know how I blended as a dancer, and perhaps it was my unique style that let me work. I am never going to be able to walk normally and it turns out, it was unlikely I ever could walk from the moment of birth. My disability has always been here, now I just need to learn to respect my body and what it needs.

Reset (Trigger Warning)

I have hit the reset button on every relationship in my life at least once.  Everyone goes through periods where they reevaluate things, forgive things, or decide that people aren’t worth their time. It’s a part of nature, and that part is supposedly what keeps our world in motion. That supposition is crap of course. I gave my mother another chance out of desperation. She came through just enough for me to get my hopes up that maybe things had changed.

My bad. No, really it is her bad. I know she could find this and read it. Hell she has given clues she has read my blog. Maybe this was a form of punishment for it? I am tired, I am in so much pain, I am barely sleeping again, and I am still without my bed. My bed isn’t a luxury, it is a necessity. I know that sleeping on the waterbed increases my health because I actually sleep. Right now I am sleeping on a broken couch.

I have been moved for almost two weeks, and still no bed. Why? Because she argued with my older sister, so I receive the punishment from them both. Why? Because I come in second or third or tenth place to a lamb. I understand that other people’s wants and needs are important, I have spent my life dedicated to fulfilling their wants and needs at the expense of mine. I have sacrificed and bled for these same people. I try so hard to expect nothing because when I do get something there is a price.

First they damaged the waterbed wood. Flat pieces of wood shouldn’t have big holes in them when moved unless they are mishandled. That is not fixed yet. Then they cut my HOSE. If I want my bed filled I have to buy another. So I’ll have two hoses, one in two parts. It’s just MY Hose so why bother respecting that? Sure it could be repaired, but only if I can do it myself and I cannot.

The awkardness I feel when speaking to my mother is returned too. The knowing that neither of us is able to say what we want. I feel like I lie when I say I love her. I do love her, but it feels like I am saying it just so she may do what I need and not what she wants for me. I wonder if she wants me to just suffer? What did I do that was so bad? Compared to her I’ve had more successful relationships. Is that what I did wrong? I only married one abuser? Even my latest Step Father turned out to be a rotted fruit on the tree of life.

I want her safe, I told her if she needs to flee him to come to my home, I could make it work. How? Well I expected I would have a bed, so that my couch could sleep two, then there’s the air mattress that can be duct taped, and a third air mattress that also needs some repair. It’s still something. I cannot use the air mattresses, as I cannot get up off of the floor. I know now my ability to sleep at all thus far has been the exhaustion of months of struggle. I am worn out emotionally, physically and mentally but it is never enough.

My pain is being used as a punishment against me for the actions of others. I regret even needing help. If I could have moved without my mother? I would have. If I could tell her to go to hell and know that someone innocent wouldn’t suffer, I would. I instead must risk poisoning my spirit and heart by contact to protect those that still retain their innocence. Innocence I haven’t had for so long that it ages me.

Taking a picture of the cats sitting on me revealed my pain to a friend, I was hiding it but he can see it in my eyes. I can hide so much from the world, but my pain is overflowing. I try to give it less space, yet gas under pressure explodes and I have been under pressure for a long time. The solution to my bed problem is not simple. The screws were lost. Of course they were. The broken wood must be repaired. That costs money. I don’t have it. Again I come up against a world of need. I have tried to keep everything I own and NEED in one piece. I am falling apart at the seams myself, can’t I just have a single night of rest?

I am complaining again. If I don’t let this out then I won’t be able to stop crying. To breathe is pain. To think is pain. To open my eyes is pain. To move is pain. I am alone today as well. My caregiver thinks she has the swine flu, so until she sees a doctor I am alone. Again the urge to fire her so I can have someone reliable rears it’s head but I know this is an over reaction. One day alone won’t kill me right? Well it may but I have longed for solitude for a long time. There is a difference between alone and lonely.

I am trying to reset my pain, my thoughts and yet with my mother the reset brings out the poison. Have fun in Roswell. I said it. What I felt was instead have fun in Roswell with the lamb, while you betray me again. This is the smallest betrayal of my life and it seems the most painful. My body cannot take anything else but I have to push. I already broke again and again. I don’t think I can push anymore.

All the joy I had at being home and safe, at being able to go outside is gone. How can I go outside if breathing leaves me in tears because the couch dislocates EVERYTHING. How can I sleep if the couch stabs me because it broke and I had to put wood under it, which adds pressure. I am not sure what to do. I think I have to do this myself and it is not possible. I am not strong enough. I just want to reset this move. I want to go back to the start and change the way the bed went. I would lose the trust of my sister but my pain makes me selfish.

That’s what is being said to me when I ask. I am selfish for wanting my bed. I am selfish for asking. I am selfish for needing. I am selfish. I know it’s true. it is selfish for me to expect people to give up their time and spend an hour here to give me what I need. Selfish isn’t bad in this case. It cannot be, when my health is degrading. I am not sure I can ever recover emotionally from this betrayal, I was already weak and vulnerable and past my limit. My mother said it herself. There is no reset.

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