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.