The V Word

The V word is Victim. I wasn’t really expecting to write about Survivors and Victims but a post was put up over at Feministing and it made me think. I often use them a bit interchangeably for myself, but I shy away from the word Victim. I was always told to be a victim let the attacker, abuser, or generally bad person win. You have to survive. You have to be more than they tore you down as. You must be better.

Victim, it is a nasty word, but only because we are told that. I have, in some of my writings the term Victim/Survivor. I tried once creating a new word but none stuck. Victim. When I wear that name tag my heart is open, bleeding with agony. I feel my tears pouring over my flesh, I feel the pain of the beatings freshly, I feel the open wounds in my body, and I feel the grinding finality of impending death that never quite comes. That is why I cannot be a victim. If I am just a victim, I cannot stop suffocating.

When I wear the name survivor I sit up straighter, my eyes dry out and grow cold. I am a hawk, I am a warrior. I am armed to the teeth and have armor with few chinks. I am the great defender of Victims everywhere. I wear Survivor when I advocate. Survivor is strong. It is not a false strength. It is the tempering that comes from fire. I am not steel, I am a +10 Anti Bad guy Blade of Honor. I am the magical weapon that can win the battle. I am everything I need.

So what comes then from the dual title? I think that is when I am merely myself. I am not having to fight so hard that I cannot acknowledge that pulsating vulnerability, but I am not so bleeding out emotionally. My emotions are not overriding logic. I am just me. Survivor/Victim. Victim/Survivor. It is the best title, for it is the title I wear when balanced.

At times I question my right to either title. What right do I have to be a victim when someone else is hurting worse? When someone else has had more pain? That is when I remind myself that my pain is valid. I have been through enough that I shouldn’t have to ask myself that yet, I think every Victim/Survivor does. It is a part of the human mind set, or it is something we are taught that we must never be either. Survivor is better, it is the socially acceptable title but it is the hardest one to live with. Being a survivor often means rejecting your history. That is not my term for it, but that is the terms of the agreement that society has shown me. I never signed that contract. I did not enlist to be abused. I didn’t say, “Hey why don’tcha rape me today?” I didn’t ask for it.

Survivor is often a term used to excuse the victim blaming in the media. It is a term lobbed at people who aren’t finished surviving. Did you know I survived my disability? I am not a victim of my disability but I am not done with it yet. I will never survive my disabilities. They will be with me until I die. Neither title fits then. Both are misused. With the Rhianna/Chris Brown thing I have heard and read that she is a survivor. Why are we labeling her a label that she has to give herself?

I really doubt this woman is ready to be a survivor. She is still fighting, she is still being a victim. Being a victim doesn’t end the moment the abuse/rape/tragedy does. It ends only when you begin to heal and only if you choose to stop wearing the label. It only ends when you are ready. No one can tell you to stop being a victim and start being a survivor. No one can tell you that one word is worth more than the other. No one can tell you what you believe about them. You are the only one who can choose. That is why I will always be a victim. That is why I will always be a survivor.

My mother used to warn her daughters about playing the victim. If we complained too much about my older brother hitting us or pinching and poking, we were playing the Victim. The word became forbidden. She didn’t mean to wound us. She did however leave a wound. It became something that was wrong, it was wrong to acknowledge abuse. That was the last thing she intended yet, that was what my brain did with it. It wasn’t okay to say no to a man with whatever he wanted. I had to just take the abuse. I had to say I was a survivor but I wasn’t.

It also destroyed the potential relationship I wanted with my brother. I wanted to be like the kids on TV, the Brady Bunch kids or the Full House girls. I wanted to fight but always get along while fighting. We don’t get along. We can’t be in the same room with one another. Something happens when we do, and it isn’t pleasant. He sees me and doesn’t understand that I really do hurt. It isn’t something he understands. I have always ‘played the victim’ in his mind therefore it validated his behavior. It validated his right, in his mind, to poke me in my spinal injury. It validated his poor jokes. It validated his right to bash me for gaining weight.

Rights he doesn’t really have. The Victim Word is often used as a validation for why the abuse happened. Victims just as for it right? Being a victim is hard. It is harder than being a survivor in the reality that the pain is active in those moments. Neither title should be wanted. I do not think any person wants to be a victim. I cannot heal with my brother until he is ready to see beyond what we were taught about victims. I cannot heal with him until I am ready to risk him being unable to do so. I am still a little girl in parts of my head and heart. I am still hearing my mother snarl, “Stop playing the victim.”

I pick up my sword then, don my armor and try to not cry. I cannot cry most of the time either as victim or survivor. I only cry when I can wear them both. I only cry when I can wear the title of One who Lives. It is longer, it is also the simple act of living and existing that gives it to me. If you are either a Victim or a Survivor this article isn’t meant to bash you, it isn’t meant to bash anyone at all. It is my answer to Victim or Survivor.

I am both.

Confessions and Denial

I have a confession to make. I have been in denial about the extent of my back injury. This was partly to survive, but mainly out of fear. What does a spinal cord injury mean? To me it was this frightening set of words that meant I would never do anything again. I have already proven to myself that this is not true, and finally I needed to know. What exactly happened when my spine began to fall apart? What happens as the damage is furthered? Why am I not supposed to exercise? Why do I keep having palpitations and trouble breathing but my heart seems fine? The last one is what made me start learning. Four years of denial, have ended. The answers are frightening but, empowering.

I found this nifty tool, a spinal cord map! This was the first step towards opening my mind to the information. The map gives a general break down of what happens when the zones are injured. My Spinal Cord Injury is overlapping two of the zones, and knowing now what I do, I can understand all of the above. T-12 and L-1 are both damaged, broken, and cutting into my spinal cord. My sacral region is also damaged, though to what extend I am not quite sure.

I still have feeling in my legs, most of the time, but I have limited control over them. I can do a bang up zombie impression when I am trying to walk, my arms outstretched for balance, moans escaping me as I fight to hide my pain, jerking and halting as I move slowly forward. Zombies aren’t diseased corpses. They are people trying to walk with damaged spines!

There is another set of broken bones in my back, between my shoulder blades. Eventually, if the spine goes there, I will be paralysed in a different way. Some of this terrifies me. I am supposed to focus on stillness, forgoing excercise because moving allows the gnawing teeth of broken bone to flex, shift, and cut into my spine. It hurts to move anyway, even my hands moving enough to make these words causes pain, a deep rooted ache that feels as if it will¬† never, ever end. It might not. If it doesn’t am I lucky? That depends on what comes with the ending of my pain. Death? Not so lucky. Paralysis? Not lucky. Healing?¬† Extremely unlikely, and that would be better than winning the lottery.

I must adapt. I admit openly that adaptation is not a choice, it is the only option. I can risk my life and my health to excercise or I can try to get used to a stillness that is unnatural. It is natural to move, to dance. Watch a small child play, and they are moving, unless in pain. Pain is a rescrictive thing, it constricts us and binds us in ways that our brains cannot always comprehend. That is why I am asking for more help, I need help with food, I cannot always force myself up to get it. I need help to preserve my tattered spinal cord.

In my imagination my spine is like a worn out dress I used to own, it was bright and colorful but eventually it began to wear thin, holes appeared, until one day when giving a speech I lifted my hands and it fell apart. I was thankfully wearing underwear that day but the people watching my speech saw much more of me than intended. I just grabbed my coat and pulled it on, buttoning it, then finished my speech. I no longer have the confidence to fight my body, to risk wearing my spine through. It can’t be tied back together. I cannot move through my life with a tattered spine, pretending nothing is wrong. I must accept it, and adapt.

This is not an act of strength. It is an act of life. I am not exactly sure why, but, I find no inspiration in others who have ‘over come’ their disabilities or adapted. I think it is because the truth is that you die or adapt. That is the exact thing that makes humans what they are. We adapt. We may suffer, we may struggle, but adaptation is not an act of greatness. The acts of greatness come after, with the knowlege gained and what you do with it.

I have admitted many things in my essays and writings here. Now I am admitting that I am afraid. I am afraid to adapt. It means change. I also know that every time I twist, every time I turn, every time I hear loud snaps from my back, this is something I cannot ignore. I already have an appointment in a few weeks with my doctor and I am going to ask for help. I need to see a nuerologist, I need a reassessment of my body. The wheelchair system I have is hurting me. This must be addressed. There is change afoot, and it is unpleasant.

I am admitting too that my mind is dulled often by pills and pain, together, one at a time, seperately. I am not helpless but my body leaves me vulnerable and now so does my mind. I have dreams, I have hopes, but they feel alien. Who am I to dream? Who am I to hope? These are forbidden emotions, just as to dance was forbidden and is once more. The world feels twisted, pulling at me from all sides.

I live in a world of oppression and today it is too big. I am going to write a story in a few moments, for a story telling contest I want to enter. I am going to chase down my dreams, I am going to live, I am going to adapt. I just am not going to give up. I want to. I want to dance, but, if I do I will be paralysed. There are worse things than paralysis despite what people are taught.

A wheelchair is not the end of the world. I just feel that fear anyway. I am in a wheelchair but I am still afraid of it. I am afraid now that I will pass out while using this one, that I will be hurt. This is not the freedom I felt at first, that first taste of being able to go. Now, it is a fear that does not belong. I am afraid too, that when my spine gives I will suffocate. As my spine degrades it effects my ability to breathe. I feel now that I will surely die if I cannot sing. This is silly, of course I can live without music yet I fear it. I once had this fear about my dancing, and although I can dance in my head, I can feel my muscles flexing and moving, I fear that this will not translate through, with music.

These are my confessions. I have been guilty of denial, self harm, and giving in to irrational fear. Apparently I am not super cripple today, just a human. I confess to being just like everyone else who faces adversity and disability, human. I confess that needing to adapt is frightening. I confess too, that I am determined to find a way to get what I want while respecting the needs of my spine.

Saturday Silence

I locked the cats out of my room. It was a moment of great opportunity. One was in the litter box, the other was chasing a lazer beam up the wall. The door was shut and with that I curled up, letting myself drift out on waves of exhausted sleep. I crashed early. Due to years of insomnia six hours is good, but, the peace of living in safety, with someone I love, and knowing I can shower whenever I want? I haven’t had any trouble getting to sleep here by four AM. It still bothers me when I have to be up at eight and I am staring down the clock but I can function for three days on four hours. It is nice to not have to.

I dreamed some really interesting stuff last night. I had a giant pink robot a bit like Voltron but, this one had Catnip Canons and Anti Allergy Grenades. In my dream I could destroy everything I was allergic to. I did, and became the greatest super villain ever! I kept giggling in my dream because it was just too fun to blow up cucumbers, though, eventually everyone else was just as hungry and bored with my diet as I am. That is how bored with my food I got. I dreamed of destroying your food, so you could share my boredom. In the end I re-engineered foods that we could all eat, though most of them tasted like tea and pomegranates. The Pomegranate is the one food I have no issues with.

I could live on pomegranates alone, if they were a year round fruit and not so expensive. Their rich flavour, followed by an improvement in pain level, a need to not take pain meds for two days if I eat a half, a week if I eat the entire thing, and the grand finale? No allergic reactions what so ever. This is the fruit of my dreams in my reality. I want to visit them in their native territory someday, gently petting the tree trunks, talking to my future dinners. Celebrating them in their nascent state.

It is quiet this morning. My neighbor is not vacuuming, though that is actually cause for alarm due to her constant need for clean. There are no screaming children. There are no car alarms. I did not wake up with random Batsignals on my forehead, and locking the two cats out only made them super snuggly. I like quiet. Apartments are rarely quiet. Upstairs neighbors walking, the floor/roof creaking as they do. It always sounds like they will fall through squashing me into oblivion.

I didn’t hear the whirl of technology either, just this pleasing idle. Despite the upheaval of yesterday, there is peace to be found. I also do not have to deal with any doctors or idiots today. Tomorrow I visit my mother, and although that will be exhausting, it is a day of peace. We’re eating at her house, I am picking up some gear for a speech, and I get to see my beautiful siblings. I ask permission before posting people’s faces on the net, but if I can get it I wish to show you my gorgeous sister and my super tall military minded brother.

B, my sister, is tall and graceful. She has the body for modeling, and not the plus size modeling that I did. She is the epitome of desire set by the media at this time. She is not trying and often is embarrassed and teased because she looks like a barbie doll or a porcelain doll, depending on her outfit. She has long platinum blonde hair, big hazel eyes, and will do greater things than modeling for her career. She chooses her brain over her body. “Kat, I am pretty now but what if I fall off Dixie,” Her horse,”and wind up in a wheelchair like you? They don’t want wheelchair models.”

She desires security over fame and fortune. I wish I could tell her that it could never happen to her but our mother almost broke her back falling off of a horse, and B knows all about Christopher Reeve. My grandmother screams it at her every time she finds out B has a horse. She might actually be forgetting, but with her it is hard to tell if it is just a desire to scream at B.

A is my dreamer. I am a bit possessive. They are my A and B, and I do not share well. He is nearly seven feet tall, and has recently begun to pursue his dreams by joining the ROTC. He looks good in uniform, but, for some reason when he wears the uniform he actually looks his age. He just turned 16 and has his license. Be afraid. He is prone to day dreaming and with undiagnosed medical issues, there are consequences. His father forbade diagnosis when he was younger, trapping him with a future that is bleaker than he realizes.

In my Saturday Silence, as the world drifts on, sleeping late today, I have a clear view of the future, of the past, and of the moment. I meditate on things, and I know that yesterday merely gave me something else to fix. I am no longer angry about losing out on my dancing, teaching, and other physical careers. I have something more powerful than what I would have had if I continued on the path of physicality.

Dancing makes a difference for some, I could someday dance in a movie or a music video, I could have a great career. Advocacy gives me time to breathe. Even when the pressure is on and there is fear fueling my fight more than strength, when I advocate I know exactly how much power I have. All of it. I do not feel weak when I advocate, no matter how tired I get. I have a sense of purpose that is hard to match with other goals I have had. When I advocate it is with the knowledge that I am changing the world. One tip of my hip, a slight twist of my leg, a rolling display of muscles and the freedom to shake and move, that held personal power. It felt beautiful. I felt deliciously free.

One phone call to the Governor. One conversation with a reporter. One word of support offered. One person made aware. A life of passion. This too holds power but it is the power of change, the power of equality. After sleep, after finding that I am not as alone as I felt, I am empowered in my moment of silence. I play out the moments when I nearly failed out of fear, the errors others made and that I made in this fight. These are armor.

If I recollect and prepare the times when I have been threatened, I am prepared. It is oil on my armor. When I remember what words worked, that is sharpening my sword. Saturdays of silence are not silent. They are just times to reflect and prepare for the next battle in this war. I hear the birds singing, and I know that the fight will be long and hard. I also know I will win. I may cry, I may bleed, I may wish to flea, but in these moments of solitude with my peace held in my heart I know too that nothing can stop me. I am changing the world with every word, every breath, and it is too late to go back now. The world is already different because of actions that I have taken, that you have taken, and the actions of the future will just give us more strength.

Sharpen your swords, care for your armor, feed your companions. Feast and Celebrate. Enjoy the moments of peace and silence. We are at war. We are an army, an international one at that, and nothing can stop us for we have nothing to lose and only the world to gain. Lets rule the world!

Diagnosis! Gotta Catch’em all!

I am in an emotional upheaval. I found out today that Block Insurance does not have any non Walmart Eye doctors. All of the numbers they gave me were between disconnected or offices without actual vision care professionals. I also was told to choose between Walmart and Eye Masters which is the Walmart of eye care. Would you go to Walmart for diagnosis and treatment of anything medical? I won’t. I want options. I want to see a doctor I trust, not Mr. Walmart Doctor.

I spent several hours on hold, trying to get an appointment. My right eye has an existing hole in the retinae, but no one wants to treat it. Now that hole has some little friends. I can see them, the spots grow and most of my vision is gone in that eye. I can barely see my monitor, and am defendant on the Windows built in Magnifier to see. I no longer read paper, I can’t see it. I no longer watch TV. I listen to it. I did reach the point of yelling on the phone.

The conversations were comically inept. “Thank you for Calling Block Vision, what can I do for you today?” “Yes, I am calling to try and find a provider. I …” Interrupting me, “Did you use the automated system?” “Yes, and the numbers were either invalid or the offices wanted to charge me despite my qualifying for zero copay. I also am not comfortable with Walmart for my eyecare needs. I have some advanced care issues.” I made a mistake. I admitted I need more than they want to offer.

“Spell your name.” I did. “You can’t spell your name like that.” Since it is my name and has been for a long time, I would not know how to spell my legal name. My last name is the issue of course, not the first. I spell it again, and get the same response. I am done. I want to make this person cry, I want to rain fire down upon them. Instead I take a deep breath. “Could you please transfer me to someone else?” I did not ask for a supervisor yet. “If you cannot calm down I am goin to hang up on you.” “I am calm, I just asked for you to transfer me to someone else, I do not think we are communicating well.”

She hung up. I kept getting the same person too, and after six calls I let go. I was already in tears so I screamed. I cussed. I told her exactly how good she was at her job, and since they claim to record these conversations, I hoped her bosses listened in and fired her. Not my best move, but, being treated like crap gets to me. The last thing I want is to be blind, unable to move, and unable to hear. I am being told that all that I and anyone else who is on Medicaid (mostly children) deserve is WALMART?!

Walmart screws up everything. I want a real doctor. Not some brainless person who barely managed to graduate. I want someone I can put my faith in. Wouldn’t a real doctor be hired somewhere else? I am not saying that every doctor gets the cushy jobs but I want access to the doctor of my choice or at least a variety. I do not want to be told I am insane for desiring trust with my medical professionals. I do not want to be told I have to pay out of pocket because I am low income and have other medical issues. I want medical care.

I want to see. I miss being able to see the faces of my friends clearly. I miss being able to see far enough to give safe directions. I do not drive but, shouldn’t I be able to see the end of the hood? A van doesn’t have a very long hood. I also want to do more than push and push to try and get proper care. I am so tired. I am tired of having to advocate. I have been advocating for people and fighting my entire life. I have always been the caregiver. I want someone else to do it.

This doesn’t work however. I can’t just stop advocating. I can’t because I do not know how. I instead took the time to calm down enough to call the Governor. I left him a voicemail along the lines of this, “Governor Richardson, I am a voter who encourages others to vote, “I always start out with the secret threat that if you do not help me I will not vote for you. “I have been trying to find an eye care provider.I recieve SSI benefits and am on Medicaid via the COOLTS program. You have influence here, the program has farmed out their providership for vision care to Block Vision. Block Vision is only allowing a selection from Walmart and Eyemasters doctors, I cannot get an appointment with them and my vision is degenerating. I need your help to fight for your constituents.” I left my number, and I know I should have been calmer but my voice likely gives away my frustration and the fact that I have been crying for the last few hours.

I cannot see. I am thankfully able to type with my eyes closed but there are errors. What if I wait too long to see someone and wind up unable to save my sight? I am not faithful in the system. Right now I am afraid I will be deaf, blind, immobile, dealing with the Autism, and autoimmune. I have one of every type of disability, it seems. I am losing hope today.

If I want to pay for my eye care out of pocket, I can manage that how? They want more money than I get a month. Why are we choosing between Rent, Medicine, or Dental/Eyecare? Why is it you can eat but not see. Oh wait, I can’t afford food. I am a celiac. Silly me. Bread is at least seven dollars. I don’t buy bread. I don’t buy anything beyond just enough meat to survive. I am HUNGRY but there are no food programs that can accommodate my allergies. I am greedy to want that right? I am greedy to want someone to help me. I am greedy to want a break from advocacy. Right?

No matter how many other advocates there are, I feel alone. I feel as if there is no where to turn. I have to do this alone. I have to do this by myself. Who can I ask for help? What would they suggest that I have not done? I am all alone, as every advocate is at some level. There is only so much you can have someone else do for you.

It isn’t hopeless. I am after the jobs of the employees who hurt me today. That means someone else can be hired if they are fired for their incompetence. This might seem cruel, but, isn’t it just as cruel to mock someone for wanting medical care? It is just as cruel to treat someone like garbage because they are disabled. I have HUMAN rights. I have CIVIL rights. You want to mess with me? Go ahead. I bite.

Edit and End Notes:
I do not care what your God or Bible says about being alone either. I have been preached at, as if somehow my choice to not pray every time some idiot steps on my civil rights is my fault for being a non believer. I do not believe religion has much bearing on the affairs of the state. So, yes, this is a snarly article, and yes I admit I messed up by yelling and plan to keep fighting but leave your god out of my life. I haven’t needed your god to chance things for myself before, I will not need YOUR god now. Thanks for respecting my religion.

It is not religion that is shared when you ask an opinion or vent to me. I offer ideas. I do not expect you to worship me, my gods, nor is this the same as pointing out that I surely would feel better with YOUR God receiving my prayers. Seriously, are your gods somehow starving to death or something? I know plenty of people in those religions who are. So keep religion out of it. You won’t find my religious identity posted clearly anywhere.

We are Human

I sit here sharing my words with you. You read them, you feel things. I learn from your comments. I am getting to know someone, near and dear she is to my heart. I will likely never meet her in person, and that makes me cry. I will not spoil the surprise because I am going to write about her in depth later. M and I were talking again. I am feeling those consequences from dancing more than I expected, my hips are doing the lambada on their own, clicking when I breath, dislocating if I exhale. The sky is over cast and yet, there is a ringing in my soul, the clarion call for Justice.

In explaining the suffering of this person, she sky dives, she fights for her rights, and she is willing to share what is left of her life in order to make the lives of those she does not know better, I said something that made me pause. “I am American.S he is Canadian.We are Human.” I will fight for anyone who needs a warrior. This is merely who I am. It is a truth. M is Canadian and American. I think he has a dual citizenship, but neither of us know for certain. He is Canadian American. He is also Human.

It does not matter what country you live in, there are silent victims. There is little a victim can do, when they are trapped in a chair, unable to get up without help. When that help is jerked away, so often it is all that you can do to survive, much less fight for your human rights. My Left Foot, a movie about Christy Brown is on. I am listening to it, while I write. While I cry. We are human. Every one of us. It is not a soft thing, this humanity. It is abrasive, fearful, and yet it is capable of much.

Are there laws to protect these innocent victims? Yes and No. It is not a lack of law, it is a lack of proper enforcement. I might be wrong there, but, this is my American Experience. There are plenty of laws to protect the victims of rape, but you must be a victim first. There are laws to provide limited pallitive care, but you must apply and qualify. Right now, there is a chance to change that in the US. I wonder however, as we extend the amount of people who are free of institution and live at home, are we extending a regulatory process to see to it that these people are not victimized?

I do not know. So, I am going to try and find out. I think a system should be in place, surprise visits, people actually believing it when someone says “She has hurt me.” or “He doesn’t feed me.” We need to change the world. I know people who are trying. I am trying. Is the world listening? Are we seen as more than strange deformed creatures? I hope so.

I am an American. You might not be. You are human. I am human. Spread the word. Humanity isn’t limited to the able bodied white man. Humanity belongs to every homo sapien. So stop acting like we are invisible. I see you. You see me. I am human. She is Human. He is Human. WE ARE HUMAN!

Dancing with Limited Mobility

I miss dancing. It was one of my jobs, but just as writing is like breathing, it was also a part of my life that I thought I would have forever. I started dancing when I was three, my Aunt’s daughter taught Ballet and we had lessons. I remember my pride at being able to lift my leg high, and the motions, the grace. I felt like a fairy princess during every class. I never wanted it to end. It did.

My father decided that dancing was just too good for his children, so the lessons ended. The ideals and memories did not fade. I discovered Belly Dancing when I was 17, and I once again found myself moving to music. I could feel it in my blood, coursing through my veins and just as singing, it took over my soul. I could leap, I could twist, I could use my hands and my entire body to entrance someone, as I celebrated the life that is in music.

I was the healthiest I had ever been, and I finally had a job as a dancer. I was reading through the contract to sign on as a permanent dancer with a troupe when I broke my back. I knew something was wrong immediately during practice when I first lifted my arms over head and wanted to scream. I still danced, but, quickly gave up on it. I couldn’t make my body move the way it used to. I had lost the silken rhythms and was trapped in a world of pain. It was the first blow of depression. For a time I wanted to die. If I could not move, what was the point of living?

Four years, maybe more as my time line sense is skewed, and I find the music still stirring my body. Every time, if I twitch my hips slightly my spine begins to burn and I cry. I am failing to resist the lure of a simple beat. I can hear it in my head, my heart pounds and I want it. I cannot strike the poses from my modeling career, I cannot dance… or can I?

Thanks to William Shakespurr I discovered a new method for dancing. He has mastered the remote control just as Sprite has and was watching fashion shows. He has a love of the bright colors and I think it is the techno that is the latest in fashion runway modeling that draws him. I could not resist the music. Tonight after a satisfying, if exhausting Career Builders Toastmasters Meeting I flopped into bed and got comfortable. I left the TV going and reminisced.

I remembered walking on the catwalk, Striking a pose, my body in line, my face the face that the people watching wanted. My body the perfect display for clothing, to make you want to buy it. I struck a pose, laying flat. I crunched horribly but despite the protests of my frame, I felt free. It wasn’t nostalgia, my mind was not trapped in the past, it was just the giggling and playful side that I do not let out as often.

A commercial came on with music and I moved my arms, my back is supported when laying and so it doesn’t have me tipping out of my chair. I was dancing again. This is how I dance now, a fresh discovery. I can twist, I can move, without really moving. I can feel the rhythm and I am not trapped now. My limbs feel freed. I know there will be conecquenecs in the morning, there are already now with my hands refusing to respond as fluidly as normal. I am forbidden to move like this by my doctors, yet, I need it for my soul.

I will have no regrets tomarrow. I have none now, and I am free. I am dancing in the air, I am floating in the sea. Nothing can stop me, for the melody frees me. Twisting, twirling, weightless, and so alive. I burn, not with pain but with Passions that have long been starved. Model, Singer, Dancer, Teacher, Writer. Who I have been? Who I am.

Cracks in the Facade

I had planned something else to write today. I even wrote it. My brain was going one way and I believed I had written my masterpiece. There was no wrong in it. I wound up passing out, sprawled across my bed with Sprite waiting for me to come back around. My brain misfired for about three hours this afternoon and I was online. I had conversations with people that made absolutely no sense. This tested a newer online friend’s ability to tolerate. He was very nice about it, but, I realized this has happened with more and more frequency. I also wrote a mess of gibberish that held no intrinsic value, except for comedy.

This occurrence usually fills me with dread. What have I done without being aware? What was real? What was false? This time, I am certain in my reality. I do not have someone whispering in my ear that I am crazy and forgetful. I just had a malfunction in my software. I am not sure if this is from uncontrolled pain, the Aspergers, or the Brain Damage that sometimes rears it’s head. Normally I have seizures around these times too. If I did, it was while I was already passed out. I also don’t usually remember everything intended, there are usually gaping holes.

This could be progress, I could be adapting to the new state of affairs in my skull. I do not know. The memories, while complete, do contain some oddities. For example, the real conversation with a friend went like this:

Me: http://ihasahotdog.files.wordpress.com/2009/03/funny-dog-pictures-wind-teef.jpg
Him: Ah hah.
Him: Before I click the link …what is that suppose to be?
Me: doggy
Him: Cheek flapping fun.
Me: ya
Me: yudpggy
Him: Is that a combination of a yard and a pig?

This is a small excerpt from the Instant Message, my coherency went down hill. What I thought I was saying was more like this:

Me: http://ihasahotdog.files.wordpress.com/2009/03/funny-dog-pictures-wind-teef.jpg
Him: Ah hah.
Him: Before I click the link …what is that suppose to be?
Me: A loldog, from the Failblog people.
Him: Cheek flapping fun.
Me: Yeah.
Me: Do you have a dog?
Him: Is that a combination of a yard and a pig?

Upon waking I noticed the tail end of that conversation, it was very weird. I had a unique reaction however. Instead of being told I was being an idiot, must be on drugs or being treated like crap, I was asked if I was alright. I was given kindness and courtesy. The internet is relatively new, in the realm of humanity and has so far shown itself to be prone to toxic behavior. There will always be pockets of this sort of problem behavior, anonymous bullying, and yet as the internet grows and becomes a normal part of what is expected in society, the need to be cruel seems to be shifting and changing. It feels drastic.

The complexity of my medical care throws up more and more barriers. My reality isn’t always what I think it is. I live in a world that is of my own perspective, but it must be one where I can interact with others. Each time something like this happens, brain static as I call it, I grow more afraid to function in the world. Of course, I have been told as have you, that anything that could be percieved as not normal is the worst ting in the world.

There are cracks in those lies of social normative behavior. There is no reason that we cannot exist in a world with gay marriage, there is no reason why we cannot accommodate persons of short stature, those with disabilities, and have lives that are free of complaint for those without the needs. There is no reason for us to go hungry. There is no reason to say that the status quo at this time is actually worthy of us. We deserve more.

There are people who get deemed insane because they have a bad day. There are people who are supposedly sane, but, later that quiet neighbor turns out to have been a person capable of great evil. The world isn’t as beautiful as I want it to be. I see the beauty more than the faults most of the time. I cannot over look the cracks in the facade.

They mean two things. One, the perception of normal is changing. This means of course that the extremes we see on TV, where people are called fat if they do not meet a rare body standard, where there is no mix of race without it being blatent and a token gesture, and where the disabled rarely are seen in a good way, are not always accepted by the viewer.

This also means that the advocacy that myself and others perform makes a difference. Every challenge, every pain, has been worth it because of this fact. People are learning, people are growing, and the acceptance of the humanity that exists beyond able bodied white men really is there. The internet helps with this too.

Beyond my fingers, as the keyboard responds to my touch, you cannot see my face unless I desire it. I can be any person online. This is frightening in the realm of sexual exploitation. It is also freeing, I am not trapped by my body. I can go onto a program such as IMVU and I can walk. I can also go onto that program and be a giant cat in a wheelchair. With the lack of visual, there is a greater chance of universal acceptance. Though the default presumption is still that you are a white man until stated otherwise, some of the people I have met become awakened to the very fact racism still exists because they have discovered that the person on the end of the wire is not a white man.

The world is changing, and it is changing for the better. This doesn’t mean Utopia happens tomorrow. This does mean we have to keep trying. This means that we have to advocate harder, these cracks were made by those beating their fists against the walls of oppression. We must continue to pound away, to pick at the injustice. Our lives may not reflect much change, it might be generations from now, but the change is happening. There are cracks in the Facade.

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