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.

Coming Out: a Year of Autism

With the coming of Autism awareness month, it has been a year since I came out as a woman with Autism as a label. It was not a moment planned, it just.. was right. I have known for about two years, maybe three? For me, one of the side effects of my Autism and my PTSD combined is a sort of floating time. It slows, it speeds, it fades, it flares. My sense of time is not very accurate.

I was giving a speech to a small group, and the speaker who spoke before me mentioned something about Autism, and how it was a shame no one with Autism could speak for themselves. This was done before we went on. I rolled up in my scooter and gave a speech about disability. I added the words, “I am Autistic.” I had never admitted it to myself before. The room fell utterly silent, the few whispers froze. All eyes were on me. Faces reflecting what I interpreted as disbelief, some shock, some fear, and one knowing smile. I continued, after a few moments to let this speak in.

My speech altered in that moment, I added more of how my Autism is an attribute. Afterwards that first speaker left without a word to me, they never made eye contact with me again, or really spoke much. It was awkward for them. I suspect shame but I do not care. I didn’t want to hear how my brain is diseased. That was what lead to me meeting up with the wonderful people at Here Be Dragons. (Rawr!) I do post there periodically. I had just begun to read Womanist Musings, and I began to learn that I was not alone in the fight for Nuerodiversity that a burst of temper threw me into.

I won’t forget how I felt like a cartoon, my knees if i had been standing would be at an awkward angle, the light far too bright… The glaring world suddenly foreign, an alien landscape of unknown. For me, being diagnosed with Autism had been merely another label. It had been just another “thing” that built me into a physically fragile, creative and supposedly charming woman. It was just another thing people may hate me for.

Boy do they ever. Jenny McCarthy wants to mind wipe me like some sort of not so supervillain. Autism Speaks wants to cut my tongue out because I disagree with them. I am also proof that they are wrong about the vaccine thing too. All their supposed cures are wrong and full of failings. I never was vaccinated as a child. I showed signs of Autism from birth. I had measels and Rubella. I am left to wonder how much of my health ramifications could be misdiagnosed side effects of these things.

In this last year I spent so much of this time fighting. When I wrote this post I wanted to show a picture of me on my new wheels, my hair back to it’s red, my body back to it’s health. This post is one of the things I tantalized myself with. Where would I be in a year if I lived? Through this blog, which is actually over a year old, I found friends, support, and life. This goes beyond Autism, though my Autism has come to dominate some of what I write about, as I have begun to see that the other advocates for other isms can handle what is going on but Autism needs more help in being fended for.

A year ago my brother was murdered, my then husband had imprisoned me, I was lying and hiding it in terror. A year ago I was starving. A year ago, I thought that my blog may hold my last words. This blog was not originally meant to be so personal either. Through the last year part of my need to survive left me shedding a good deal of anonymity. Renee of Womanist Musings and Kowalski of Here there be dragons both had the largest impact too.

Renee helped me to learn that I can speak out again. I had stopped out of my terror, and she helped me to get that back. I have no issue telling someone they are being racist, ableist, and can stop their derailing most of the time. Renee is a great educator and a great friend.

Kowalski helped me to accept some of my vulnerability. I know I can email either of them if I need to just talk. If there is a moment where nothing else can get me to keep going. Kowalski taught me that it is important to not let my voice be silenced, because with some of my labels it may be permanent. Kowalski also taught me something else. To love me. How? The writings of Kowalski are often a mirror to what I need to face to heal.

I have survived great violence against my identity and person. My right to take up space was violated. I was raped, starved, threatened, and almost murdered. I was worn beyond the brass tacks of my soul. You my readers and friends (there is overlap there) gave me the ability to fix my wheels the first time they broke. Now you get to read about my forcing a new wheelchair out of the insurance. You gave me the freedom and means to LIVE.

I have begun to cry when I write this, and most of it is joy, yet there is mourning. I look at my broken scooter and I think of all the things I did with that freedom, and I think of how closely I came so many times to death. This ignores the fact that I am still fighting suicide. I will win. My scooter even helped William find his new home. He is happy now, I called his new owner and William, who scared me badly towards the end is seen as the best behaved and most angelic feline in the entire world.

I would write even if no one read it. I have blog posts that are hidden away on my hard drive that no one will see, at least at this point. To everyone who has written me using the contact form that sits somewhere on the blog saying I helped you… you helped me too.

As I sit here knowing I cannot ever return to some of my most beloved activities, and in some ways certain types of activism even after I get my mobility back, I mourn and move on. I create new hobbies, new goals, and new dreams. It is no longer life ending to admit that for my own life I must not do the very things that I thought made me who I am. It is no longer the end of my world.

Thank you. I could name more names, but even so there are some names that should remain private. Some people whose names I do not even know who helped me. I hope that the next year my writing continues to help people, including myself. I plan to write more and more. I am still working on getting up to “it” enough to write for the Womanist Musings blog. I may even try art again, new ways new methods. I even plan to find a photographer and set up a photoshoot for who I am, so that the pictures of who I was no longer are the only ones that exist.

Some stats for the last year:

The main page of this blog has had 3,765 individual page views not counting my own

The most clicked on post from around the net is Amazonfail

This is followed by Vanity

My About page is also one of the most popular pages nearly matching the home page stats.

The busiest day for my blog with 591 views came in on Monday, April 13th, 2009

April also was my top month for visits with 3000! However my average monthly page views EXCLUDING April is 1500.

Some search terms used to find me, most popular to least:

The Oblongs

Beth Oblong

Textual Fury

Tracey Ullman

Short Girl Cartoon

Tumor

Kateryna Fury

Ehlers-Danlos Syndrome

“Autism Speaks”

Rules for service dogs

tumor artoon

Albuquerque NM Ehlers-Danlos Groups

Trigger Warning

Carl Joseph (This refers to Carl Joseph Rove, a young man who died as a result of hate)

Murder Kit

Autistic

Autistic “Abusive House”

Tracey Ullman Blackface

Hidradenitis Supprativa

Golfernoggins

“Disability” romance novels

signs of textual abuse

Suicide

how to kill yourself

tired in pain

whatever happened to baby jane

anger cliches

There are way more, I just found these the most interesting or ooooh there’s mah name!

So for the last year and then some… thank you.

Rape, Molestation, and Trigger Warnings (Trigger Warning)

I am sitting here in a moment of pain and anguish that has my body and brain fighting for supremacy. If my body has it’s way I will rest in bed and sleep. My brain is however screaming to be heard. My heart is broken. A judge has decreed that, with allegations of abuse that the judge believed, two small children are to be left alone with their SEXUAL PREDATOR OF A FATHER. This link has a trigger warning on it. I know most of my posts come with one. My life is triggering for me and I know can trigger others.

I am triggered back to Thanksgiving. I was in the same place, with adults knowing. I could have been saved. I am a very angry woman at times because of this. When the judge who sentenced me to rape, as this judge has these girls, at the same age as the youngest… when that man died? I was so very happy. He couldn’t hurt anyone else. This judge needs to have his ability to be a judge removed. This needs to be appealed.

Their mother needs to deny him his “legal right”. No man or woman who is a predator has the right to their children. This is why the foster care system exists. The system is abused, I know that, but if neither parent is capable that is the core ideal. The mother is not referenced much and I am presuming she is capable. It’s called Sole Custody with limited visitation or NO VISITATION. It’s called respecting that when he gets into the room with those girls and rapes them, and breaks them, you Judge are as guilty of that rape.

I feel the hands on me again. I feel that terror. I feel like puking. Molestation is a “pretty” word used often to hide the depths of sexual abuse in reporting. The fact is, that this man will rape his children. That is why they have to lock the door. I can see them sitting as I once did. The dark room, if there is a window you sit beside it. The bed covers are pulled over you, you wear your pants so that it’s harder.

My step mother was there sometimes when he did rape me. She condoned it actually, because it kept him out of her bed. An adult cannot protect them. Their lives are now on a dangerous precipice. I pray that they are strong. The betrayal of the system does not shock me, it cannot because my betrayal wasn’t news worthy. Perhaps public outcry will help these girls.

Perhaps in a few years when they start to look to healing, they find this post or one like it and know they aren’t alone.

I was eight years old. It’s been almost twenty years. Almost TWENTY YEARS. I am not over it. I never will be over it.

I hope that this judge is punished and his sentence, for these girls have been SENTENCED AND PUNISHED BY HIM is overturned.

Gender

I am a woman. I have never had doubts that I was female… or have I? There is a period in my life I do not talk about often, when I wanted to be a boy. I tried to cut off my breasts, I shaved my head, I desperately wanted to stop being female. I do identify as a female but, it was terrifying because the world hates women. This was one of the steps that lead me to know that persons who are born transgendered, inter-gender, or even without a gender (links to Norrie and Clair Lewis) are born that way.

This period helped me to deal with my struggle when I realized I am bisexual. I actually have a stronger preference for women than men. I often joke that this is because women taste better, to lighten the mood if I am outed. I live mostly in the closet, because my community is in accessible and I am fearful. Also, because of my mother’s reaction the first time I told her. She told me I was instantly a whore. I was slut shamed, I was told I was a liar, and I went with it because I had no recourse.

I admire anyone who lives with their sexual identity and gender identity in the open when it does not match up with the lie of Gender Binary. I have many friends who are between the two pegs that privilege reigns with in. I admire the strenght it takes just to be yourself when there is little to no protection for you in this world and your gender or lack there of makes you a target. That must be beyond terrifying.

I just did my census form, and there were only two check boxes. I secretly hope that those who do not identify as female or male make their own box. This of course may cause issues later but, the fact is, if you don’t fit in the little box then make your own!

This post is in honor of the 11th Annual Transgendered Remembrance day. This link is to a blog called Deeply Problematic, a blog with a series of other links about today and this issue and this link is to the memorial.

I find it striking how many of our brothers and sisters did not have a photo. Something about that strikes me. The lack of photo mirrors a lack of acceptance.

I light a candle and the candle is for each loss we know of, and the many we do not. I light a candle so that no one forgets your murder.

Hope

Hope, something that I rarely let myself feel… it came barging into my home today. Hope with a guarantee! I had my wheelchair assessment today. The assessment with a physical therapist that I had to fight tooth and nail for. I had to face shame, I had to face the rejection of my humanity, and yet I did not give up. I couldn’t. The times when I almost could, I knew I had a way to get support. I have a list of people that I can talk to or email when I need help. Those people came to mind when the caregiver lost her temper. Those people came to mind when I wanted to just cry. We did it.

The physical therapist just left. She was funny, and she respected my knowledge about my body. She noted something new too. I have symptoms of Lupus, beyond just the Ehlers-Danlos Syndrome. Some of the flexibility issues and the circulatory issues are related to Lupus. My mother has had symptoms of Lupus, and yet has never been diagnosed. Her ANA is always high enough it’s just not a diagnosis she has managed for herself. Some of this is fear on her part, fear of the label. I can help her now, this information means I can help her. I have tried to show her for years that labels don’t make barriers unless I let them and can be helpful.

Between jokes, which helped me relax a bit, and questions that no one wants to answer but I had to it became clear that I have always needed a better wheelchair than what I had. She said it was something that angered her when she saw a useless chair wasted on someone with a greater need. This is something I have been aware of for a while. I got to educate her about the Lemon Law, a federal law with state modifiability that protects me from being stuck with a useless wheelchair. Getting it enforced is another matter but the law is there.

Not only does this woman have a really great personality for her job but she made it clear with in moments that she knows I am a person. I am a person of value. It turns out that she did my assessment for free, because the insurance wouldn’t pay. She gave me this gift. Not only is that rare but, I am honored. I told her she should still bill them. I still feel this is an advocacy win, because the insurance will not win. I will. My doctor, the physical therapist, the wheelchair fitting specialist/salesman, me, and a dozen other people will keep fighting until I win. In fact, with the assessment today I was told I should have a chair with in three months. That’s pretty fast for my insurance.

I can taste the freedom. I can smell it. It’s Saint Padraig’s day and I am feeling as free as ever. I finally have hope. My heart aches a bit with the strangeness of it. It has been so long since I dared hope. So here is a blessing for you. Since I am Scots Irish pretend it’s a traditional one if you so desire:

May you hope. May you dream. May you have all you need. May the struggles make you stronger. May you know love.

The Institute and the Adult (Trigger Warning)

I just wanted it to be in my head. I realized after losing a caregiver because the caregiver broke down mentally that I wanted the problem to be me. I was crying, struggling with the feelings that come with being vulnerable and endangered, struggling to get food, and the pain that comes with moving my body in ways it cannot really handle. I wanted it to be in my head.

If all the problems were in my head and were not real my life could be as it once was. For a moment I had everything, I had love, happiness, my health was improving for the first time and then… it was snatched away. I was starting to feel whole again. Then, I was snatched once more back from the brink of success. Even personally success in this world is a struggle for most people. The minority that masquerades as a majority has made it this way. I just wanted to go back to that place, I imagined it all.

Some of this comes from how much easier it seemed on the surface when all my disabilities were fragments of my mind, that nothing was really wrong with me. I just had to stop making it up. I just had to get a better grasp on reality. As I think in music and color rather than words, the thoughts surrounding that are truly discordant violin notes, the colors brackish. It’s a sensation of mocking. That life was a mockery of life. I was ill, and as long as it was in my head there was no hope of recovery.

If the issues with a caregiver turning violent were just in my head, then, I would still be in danger. That urge to put it all in a neat little package is dangerous. It’s a form of denial, though this denial is socially acceptable. It stems from my being medicalized at a young age. Nothing can just be, it must either have a cure or be a figment of my deluded little mind. Delusion can be comforting. Delusion means that there is nothing I can do about it but stop thinking. Reality requires action.

I am tired of action! I am still haunted by the sensations of my day. That prickling fear as I heard the first crash. I let it go on for a half an hour before I confirmed it. I let myself think it was just me being “jumpy.” Jumpy is code for triggered. I couldn’t ignore it when Sprite began to scream. Sprite, even when she signals things to me is a very quite service cat. She tends to use her paws and a soft flittery meow or a purr instead of a yowl. She yowled. The sounds in the other room were growing louder.

I had to choose. Do I risk my safety and my service animal’s saftey in order to retain this idea that every time I am afraid I am just being delusional? How many times did I do that with my ex-husband before I accepted that he was hurting me? I can’t be sure. However, today I didn’t let it get past once. I had to give up my delusions. I chose life.

Life is never easy. I suspect the main reason that the temporarily able bodied among us want our lives to be inspiring is they cannot concieve of happiness with a disability, as most of them are not happy. They spend their existance toiling for the gain of others. This is less so in countries outside of the US but, it is still a blatant reality. Some of these persons may also be in that same delusion about their ability, or other issues such as sexuality and gender. They waste their reality on delusion.

Since I became aware that therapists are not all knowing, and that my Mother has been desperatly wrong, I have faced delusion many times. Still it can over ride my own instinct to surive. I sit here in a room with the acrid odor of cleaning products, something that is avoided when they are used properly. The antisceptic odor makes me feel almost as if the institution is right there. That is the entire core of it.

If the issue is in my head, then I am outwardly safe. If it is in my head I can handle it. I can control it. If it is real, and no one believes me, I am at risk of being locked up. The core of my terror in speaking out today was in losing my freedoms, because a caregiver has more power than I do. After the agency head Robert spoke with my now ex caregiver today, he confirmed that she admitted she was over reacting to the situation. I don’t know what her future holds, but, I worry for her. I worry too, for anyone in danger that will stay there for fear of the instutition.

Some of the people who come across these words will state, “It can’t be that bad.” I still have nightmares, usually around the times when I have to fight the hardest for my right to merely breathe about the institutions. The place I was was actually not that bad compaired to many. Still all the labels thrown at me, the drugs that made my brain numb and my body bleed? Those were terrifying too. The threats that I would have electroshock therapy used on me if I didn’t behave a bit better. The behaviors that they threatened? Those all consisted of things like avoiding things that made my stomach hurt at lunch, having trouble sleeping, and having nightmares.

Some of the staff were wonderful. I remember their faces in flashes, and the comfort they brought. I remember the coldness of the beds, the tiny windows with bars, and the high fences where the only bit of reality I could see was the top of the bank building where my Aunt worked as a lawyer’s assistant. I remember more the cold showers, being watched. Not being allowed to pee without being watched. I remember the male staff with those. It was never female staff.

I remember the mean staff the most. I had to think hard to survive around them. Some locked me in isolation for tripping. Some punished me for not knowing a new rule that no one had bothered to announce. One in particular made fun of me for gaining weight when I started to eat again, after being a small child with an eating disorder. I managed to conform so they wouldn’t drug me by force. I took all the pills, even the ones that made me sick and lose time. I did my best.

I remember each tour of every facility. Once my mother was gone we got a second tour. We were shown the isolation room, the one with the bed and straps. We were shown their needles. We were told added rules. There of course are always the secrets and ways that a kind person in there may share on how to survive. Each place had it’s special etiquette. Yet always, in each one I was watched while bathing.

There was the one place that is technically an institution that I do not count as such. This is the only place that helped me. The difference there is I wasn’t treated like a waste of flesh but I was a person with needs, responsibilities, and the ability to help someone else.

It is thoughts of the institutions that hurt me that I think of when I must tell someone in authority a truth they dislike. It is threats of such places that keep me struggling to be somehow better than my reality. It is a terror that comes with knowing that as an adult the institutions are forever, and they are far worse than any I had as a child.

It is with that in mind that I wanted my fear to be something caused by a personal insanity. If that is the case, then I never have to speak up. I never have to say a word. I never have to fight. I don’t have to find a way to call for help. I can just mourn the loss of supposed sanity and keep trying to live on the “outside”.

The last place I left, I was told I would be locked up again with in five years. I was told I could never function as an adult in society, that I was hopeless. This was said by a therapist. This was the one institution that helped me. My mistake, the thing that earned me this ruling was telling the therapist, “I don’t think all my pain is somatic and I think it’s okay for me to be afraid I will fail.” My mistake was in believing that something was not a mental health concern, and in believing that I merit feeling what I feel.

I almost was not let free based on that conversation. This was also one of the better therapists of my childhood. Today, I declare myself free. None of it has been in my head. None of it will be. If something is in my head as a fear related to post traumas, depression, it does not mean I have to live in a cage. I promise myself now that I will not exchange freedom for a lie because I risk being caged. I am caged by those lies more effectively.

What the Hell! (Trigger Warning)

Today’s trigger warning is brought to you by abusive caregivers! Today I did not want to wake up. Sprite insisted, and in her special way got me upright, into pre-shower jammies. I always put on clean pajamas before I shower, so that I can then put on clean clothes. It feels good this way. So I put on my red satin jammies. I feel like a movie star with this on. I did the morning ritual, pee, meds, considering food, rejecting that idea because it’s too early. I curled up and watched a cartoon on my computer.

It was so late and my internal clock went “Ding, caregiver is late.” I looked at the clock, she wasn’t just a little late. She was a half an hour late. So I called the office. They normally call if someone calls in, and I requested that they make sure she knows, she calls them BEFORE she is late. They called me back, they gave her a formal warning. This is your job on the line, if you don’t call in next time you get fired.

I don’t have to hear the excuses for why people are late now. I try to not be late, it makes me panic to be late. I do not hold others to the same terror of lateness that I experience. I opened the blanket so I could watch the sky, still planning to shower. This would be three whole days not a week… twice in a row! Improvement. The office and I were on the phone when she walked up, so I told them she was here. Simple. Easy.

She starts giving me the excuses and I cut her off. “I don’t want to hear them. I don’t need to either. Lets just get the work done.” Maybe I said it wrong? I know better than that but she argued about feeding the cat, about feeding me. I pointed out she was over an hour and a half late, and since she never called I couldn’t compensate for that. I have to know she is going to be that late when I am in motion or it’s too late. I save moving sometimes or will save movement energy if I need to. I also tell her that we will be mopping tomorrow…

She storms off, then I hear crashing. I smell bad fumes. I was eating. We don’t clean when I eat because the smells can make me queasy even on the approved stuff. I choke down my food, more crashing. She’s throwing things. I hear water splashing on the floor. She never went out for a broom. My questing mind won’t let it go. I am afraid. Sprite is afraid., Sprite.. afraid? My indicator of when I should be afraid is screaming in terror and is trying to find a safe place to hide.

I stopped doubting myself, and considering my options. I had to look to see what was going on. I used movement energy, I got upright and moved to my room, I paused in the door way, my knees were dislocating so I relocated them. The cracking made her look up. My bathroom was thrashed. No amount of cleaning makes THAT kind of mess. I grabbed my ebook reader, and then went outside. My energy is spent, I am afraid. How do I keep going? My brain stalls a moment. What do I do?

I lean on my fence, letting it hold me up. Today was thankfully good on the ability. So rare are these days when I can move this far without falling. I did not fall. I creep out of my gate when I realize she could see me. I hold my mace at the ready. I am vulnerable, the sun is burning my skin. My neighbors look up. They are gathered as they tend to be and they notice me. I rarely commune with them, but when I do go out I am never in disarray. My hair is always brushed, my feet always shoed. Shoed is a word? If not it is now. I am never in my pajamas. I am never without my scooter.

The agency and I talk, I explain what is happening. I am put on hold and transferred to the man who runs the agency. Robert is a tall black man, he used to play football, and he has always felt safe to me. He has a nice smile, and always seems to understand, even when my brain is tied between pain and panick. I get the words out, “I need you to come remove my caregiver, and get the keys. She can’t be here now.” I explain what I saw and that Sprite is also afraid. I also tell him I am pretending to call my mother, she has no idea I have done this because I am afraid.

He got here in five minutes. I had just made it in, the door left unlocked. The window is still open. Jo has moved to the kitchen, supposedly the bathroom is fixed. I haven’t looked yet. She is smearing the broom around in soapy water. No mop. She doesn’t grab the mop until Robert is here. My knight in shining armor. Damned damsel in distress. I hate needing a rescue. I signal for him to enter when I see him. He steps over the puddle that is my entry way, and her mood shifts. She stops glaring at me when she sees him there, and grabs the mop. We let her finish “mopping” though my floor has brown streaks in it now. It’s dirtier. Cat poop litter streaks? That’s the level of ick that is in the bathroom. That is why I keep the germs seperate. Different broom, different mop. My kitchen floor is coated in grime. It scares me.

He didn’t tell her I called. I didn’t have to talk until I was ready. Robert noted Sprite, still screaming. She calmed some when he entered. Sprite likes him too. She moves and sits beside him. She keeps growling and muttering at Jo. I get the keys back. Robert and I talk. “You should never be afraid of your caregiver. You did the right thing.” I explain, sometimes I am afraid of everything and everyone and I can’t always tell if it is reasonable fear. Sprite tells me. He points out that Sprite calmed down the moment the door closed behind her.

Sprite is asleep. I have been calling people. I was on the phone with someone, I also got a few calls while in the moment of mess. I also texted two people before I realized it wasn’t PTSD and autistic overload. My body hurts. My body doesn’t just hurt but my mind too. The switch between calm and rage was so sudden. I flashed back. My terror was real for the moment. It wasn’t too much it just was. The agency respects me as a person and knew.

I called my mother, and told her that I had to use her as an excuse. She pointed out people DO argue with their parents, so it was a good excuse and to use it again if I have to. We talked. There was no anger. There was no fear. I talked to My Beth, my sweet sister. She asked why I was so out of it. I told her, we talked about the mundane. My Beth is almost an adult now. I know I should not call her mine but she is mine in a way. My memories. My sister. My Beth. She was tired, and yet she made sure to talk to me a bit. We didn’t talk too long, they are moving cars today so she had to go help winch something. My mom called back after they were done winching. She was glad I trusted her enough to use the excuse.

The reason that is trust is, my caregivers before who were not giving care but abuse have called to verify my excuses. I am also afraid of using an excuse with someone who could be hurt. It takes trust to let someone be your excuse. It takes trust. I am trying. She is trying.

Still… what the hell happened? I can’t follow the line in mind. A half an hour of abuse happened. The why escapes me as it always does. I can handle the cursing, I can handle someone being mad. I cannot handle the flinging of things. I have to pee now so I will see how bad the bathroom is. The floors should be dry now. It’s been an hour. Right now Jo is finding out she no longer works for the agency.

I am always afraid that I will be told I cannot have a caregiver again when this happens. I already know I have a temporary person coming in and that the agency doesn’t hold this against me. They hold this sort of action against the caregiver. I am known to be a rather laid back person (on the outside, my head is not so laid back as you my readers know). I tend to roll with the little challenges, I try to work things out.

“You should never be afraid of your caregiver.” I am going to try and remember that. My little fear and trepidation, I will try to let them go. I am not afraid of anyone at the agency, my neighbors, and I am working on my fear of my mother. I felt safer outside of my house today. Maybe this is in and of itself a form of progress?

The Illusion of Disability

Sometimes I long for the illusions I had as a child about the world. I was well aware of disability, a man my mother dated had MS, and when he needed it he had a fancy chair. He explained to me the rules about wheelchairs and respecting the boundaries that exist. I was very little, six or so, and he would treat me like an adult. He even let me play with his civil war era Bugle, long before  I was a trumpet player.

I remember the day he seemed frustrated by something I couldn’t understand. He was having trouble getting his medicine. In my line of thinking, if you were sick enough to see a doctor, and he saw the doctor a lot, then you could get your medicine and be on your way. When your body stops working you would go to the doctor and come back home with crutches or a wheelchair and live again. It was that simple.

I wonder if some people never grow out of this stage of illusion. In my world there was no need for money, there was no cost involved in having your needs met. After all, if you cannot live without something then it’s the duty of those around you to help right? This was what the Church taught us and at that point i hadn’t developed my ability to question authority. Do unto others in my mind appears as socialized medicine does. I do hope I am not as naieve about the truths and hardships with those programs as I was about disability.

In those foggy memories I remember him telling me that his body ached. He and I had a connection, and I shared with him a secret that everyone does. I remember the look in his eyes, he looked so sad. He told me that wasn’t true but I said, with the facts I had making me believe this absolutely, “Everyone hurts all the time. I do. I think my mommy does because she always cries when she thinks no one can see.” He pulled me into his lap, which hurt him a lot. He was the first person I had ever met that didn’t like touch as much as me. He seemed normal to me. He still does. Again the illusion that he would not face discrimination. I had yet to see what that was. That wasn’t coming for a few months.

He didn’t speak, he just looked at me. Then he handed me the bugle and told me to play taps. He never asked me to run outside after that. He didn’t protest my sitting in his library with the books. I know what changed now. He knew then that my body wasn’t really “right”. I’ve had that moment with others. My niece, she has the same genetic challenges I do. I wish I could tell her it isn’t normal to hurt. It is for me, and that maybe is an advantage. I have been in pain since birth. This man of shadows and sorrow, he was not born this way. Does Muscular Dystrophy hurt before it develops? Is it genetic? I should look into this but right now I am running on my own shadows and sorrow.

Being unable to go outside because of the damaged chair has left me fighting that sucking sensation called depression. It got worse as my mic died, so my creative outlets with sound went away. I already lost my visual creativity due to my disabilities. Even typing this I feel trapped. I am in a prison. I wonder, was this man in a prison? I remember his hands shaking as he ate. I remember thinking that it must be sad to shake. Now I do. I just wanted to make him happy. I didn’t ever want to cure his illness, as I didn’t understand cure then. I just liked it better when he would smile.

I held my illusion that disability would not be so bad, if I had what I needed, I held it until I could no longer believe this was true. The first time I gave in and asked for assistance with mobility came after a  year of struggle. It came after I nearly died from dehydration and from passing out in the hot hot sun. It lead to my discovery that I  am literally allergic to the sun. I had dropped out of school and I was no longer doing anything. My doctor told me, “I am not sure we can give you a walker, you may stop moving.” It’s the same line. It doesn’t matter the disability, the same line is used to save the insurance people money or to save the doctor paperwork.

Here is a list of costs incurred by my government by not giving me what I needed in the last 365 days. I suspect this list is common more than rare.

Item                                   Average Cost in USD ($)     Quantity

Emergency Room Visits  $500 just to enter               10

Ambulence Rides              $700                                       10

Tests in ER (xrays etc)    $100-900    (visit total)      40 (guestimation, likely higher. Averaged 4 blood tests per visit and 5 xrays per visit.)

Medicine related to ER visit $50-$200                       13 (prescriptions total, not pills. Average pill total was 90.)

Casting, braces, etc             $500                                      2

Food                                        $75                                         1 (One meal in hospital, the administrator complained in person about my dietary needs)

Total: 30875 * quantities over 1 were averaged between the numbers above

I got the numbers off of the bills the insurance rejected, to try and force me to pay. I did not include visits that were not preventable. Those are just the falls. JUST the falls. This means when I had pneumonia, when I had the anthrax infection, when I had allergic reactions I did not count those above. I fall at least once every two hours that I am awake. I also happen to be having to pee every two hours. I stand up, I walk and I fall. Sometimes I fall enroute and on my return trip. (Pun SO not intended).

The cost of the wheelchair I have been prescribed is listed at just under $7000. I am fighting to save the insurance people money. I never dreamed disability was preventable. I was always aware that pain existed and sometimes you needed help with pain. I never cared about that, until I found out that you don’t get the help you need without a screaming fight that lasts as long as you live.

I am tired of being told I will be less mobile because of a wheelchair. I sit as still as I can so I do not fall off of my couch. With a proper chair, I won’t just be able to go outside, or go pee without falling… I can move, I can wiggle, I can fidget. I may even be able to arrange to go swimming. Swimming hurts as bad as bathing but I love it. I can move freely as if my spine wasn’t slowly being severed by my own body. How can I move, dear scientists turned beurocrats if my legs do not get the signals? Have you found a way to repair my spine without KILLING ME? Or At all? Since nerves once severed do not regrow… why don’t you just give in?

Insurance company, preventative care is cheaper. I wouldn’t need the wheelchair in the first place if you had actually approved preventative care. You are costing you money not me. The true financial burden to the citizens who work (some of whom are disabled thank you) is not me. It is your ineptitude. No, not every ER visit would be suddenly gone, but on average for the last five years I would have only gone FOUR times. Three of those allergies, once for Domestic violence issues.

I miss the illusion that should I ever be in need of anything, it would be there. I miss the idea that I could rest at night without this unabiding terror that should something break like, a wheelchair or my computer, I will not suddenly be cut off fromt he world, trapped in my own home. Even with my computer I feel trapped. The same feeling would be there without my computer and with a working wheelchair. I know this. It terrifies me.

Right now, I am once again suicidal. I already got the help I need to make it until morning. M talked me back to a safe point. Still, insurance people, you should stop trying to murder people by denying them their needs. Stop pushing the idea that an increase in quality of life does not matter. When you or someone you love is suddenly in this minority, you may still be clueless… but I will fight for you, if my hands aren’t full fighting for my right to live.

Denying me a wheelchair is denying my right to live.

I am not Broken (Trigger Warning)

I just went to bed. It’s been about twenty minutes, and I couldn’t stop my brain. Every night it is this way and always has been. I am great at meditating, but, there are times when I cannot focus on the single breath or the space between breaths or my heart beat. I just can’t shut up~!

This explosion of words and flickering images tonight was as usual, about my day, maybe what I read, saw thought, or felt and tried to ignore. I watched the new Sherlock Holmes and suppressed my analytical mind as much as I could, which is to say the movie drove me over the deep end with it’s lack of attention to detail. It’s Sherlock Frigging Holmes, you cannot miss the ligature marks and the color of the nails. That’s the very least of what was missed.

What they did add in however were moments like what I feel and go through when I go and do things. Sherlock was shown doing drugs, he was shown having too much sensory input, and he was shown having racing thoughts, images, a compilation video in his own mind that screamed at him the things he should know. That’s right, things that come from my Autism were shown in Holmes. I declare it mediocre which means most people will like it. It takes an awful lot for me to like a movie, partly because I require that this movie is either flawless, or can at least drown out my brain. Few movies can meet either criteria, and truly the best do both. I don’t have a favorite movie for t his reason, but my default answer is Batman.

The antidote for me has always been to imagine something. Imagine the better. For the last few years the better is always death. The last few weeks I have been afraid to try. Tonight it was a flash of that but I pushed that away and reached for the  better. It was exactly who I am but with a wheelchair and my natural hair color (red) again. It was me. I panicked. How can that be better? Sure I have freedom, mobility, and can resume living. My life is on pause while I fight for the new chair since the scooter died exactly a week ago come sun up. Better is me as I am?

I screamed. I screamed the word No. I tried to imagine something else. The only non me thing my brain reached for was… Barbara Gordon, as Oracle. The only actual change in image? Her computer was better. Same face, same chair, same eyes, same hair, same … ME. I should someday write a list of parallels i share with that character, some of them are astoundingly creepy. The few things we do not share I either do not want or would not be me if I had them (like a decent father). I do not know what this means. I had to talk myself down.

I am fine the way I am. There is no getting better. There is nothing better to be. Does this mean I accept myself? I do try to, but, my reaction to this makes me wonder if I fear accepting myself truly. I fear admitting that my life is this way. I tried to think of anything else but, I am still in that frantic space. I feel the spiders under my skin, and I just want to be .. me. My brain showed me an analogy that I thought may help someone else struggling with this.A fter all I have done so much, and I have changed a lot, yet some of the things will never change right?

A diamond is multifaceted. I am multifaceted. A diamond’s facets must always be a part of the diamond itself. They may touch each other, or reflect into one another, but, the fact is every facet is touching the core of the diamond. With a person this means that as much as the outside changes, as much as the body changes, the mind even… there are parts of the identity that are core to you, and will never change.

That’s when my brain stopped screaming. Another flick of random words and visions, colors, it’s hard to describe unless you experience this anyway, but the daily swirl resumed. It was more like a life montage with prettier colors involved. The time I was shot in the leg, the time I was stabbed, the time… pain happened. Instead of being different though the person was just me. My body as I am, right down to what I am wearing.

Even when my father shot me with a nail gun in the foot to punish me, and told me that the pain would make me better I was still just me. The name I used to use from birth because my parents thought it would work out? That was still me. No matter what name I answer to, no matter what highs and lows I face, no matter what injury, ability, life goals, jobs, passions, and love. I am still me. The things that make me happy have not truly changed much at all. The needs I have,yes, some have but, it turns out I never broke. I merely had a new facet added to my core. I am not broken.

Scream

This poem is dedicated to everyone who has ever been anything at all.

My brain is screaming
You don’t listen
My brain is shouting
You won’t know.
I make my words soft
So you can’t them away with lies of anger and rage
Stop silencing me
Stop denying me
I have rights
I have existence
I am here
I live
I am screaming
Silent screams
Patronizing me does not make me go away
I will not fade
I scream louder
HEAR ME
I have value
I am enraged
I am joyful
I am woman
I am man
I am neither
I am alive
I am minority

Copyrighted to me, written just now.

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