One persons Courage…

You hear about it in the news, inspirational articles, and in the whispers of people discussing someone’s life. Sometimes you hear it to your face. “You are so courageous.” I have been facing my fears lately and there has been some courage yet, most of what people tell me is courage is merely a will to live. Is the Will to Live what makes us couragous? Does this invalidate courage?

When I hear about someone being courageous, brave, or something along that line the picture in my mind is a bit gender normative and sexist. It’s a brave soldier in a black and white movie with bombs exploding behind him rescuing the little woman and running away from gunfire without breaking a sweat. I am well aware this is a very skewed image that remains in my mind. I use this image to invalidate my own experience often.

How can I be courageous? I just didn’t give up. I didn’t notice it until tonight. Giving the speech about my Thirty Seconds, I was reminded it is courageous to save a life. I found myself afraid of those words. Why fear courage? I think it is the responsibility to be something more than human that the media shows us courage is. Batman is couragous. He’s a super hero. I am just a small and broken woman at the end of her endurance trying to make it through every day.

I am trying to teach myself what courage can be, beyond the black and white John Wayne dreams. I am trying to teach myself that courage is simply living. Transgendered people who have the courage to go through the change, to live in the sex that fits their minds and not their bodies are courageous because it is their will to live. They can die for being who they are.

How terrifying it must be to have to pee in public. How terrifying it must be to go clothes shopping, to go out and feel that fear… what if someone figures out who they are and in their ridiculous hatred they attack? That is courage. It is also horribly sad that we live in a world where it is not a hate crime to attack a trans individual. I didn’t know that until recently, I thought that it was a hate crime. It should be. Living without a legal saftey net, living without basic human respect, and living without the ability to be accepted by any other minority (except for some of us who actually do care) takes courage. There are trans persons who are unable to live as they wish, because it is too dangerous.

It takes courage to live at all. It takes courage for the college student to go to her late night class, because she hears all the warnings about rape. It takes courage for the woman who was date raped to speak up, risking victim blaming and slut shaming. It takes courage for the teen mother to take pride in being a mother, bucking against the stereotypes about teen mothers. It takes courage for the disabled man to go up a flight of stairs on his hands and knees to see if his able bodied friends and family are alright after hearing a gunshot. He couldn’t escape if there was a killer. That is courage.

To revile the word courage is to revile the act of living. It takes courage for our students to go to school. We live in a world where the terror of school shootings is very real, where the hate that a disabled student feels can destroy their minds and their souls. We live in a world where there is no safe haven. It takes courage to raise a child with disabilities and to love them. It takes courage to admit that you are disabled.

It takes courage to say that you do not want to see a movie because it is full of sexism. It takes courage to be a Womanist. It takes courage to be a Feminist. It takes courage to be an advocate. It takes courage to write. It takes courage to cry. It takes courage to go out, knowing discrimination is waiting for you. It takes courage to date a person who is of another color. It takes courage to love someone who is of the same sex.

In a world as full of toxic messages, it is cowardly to defame courage. To hold the power to inspire one person is enough to change the world. To inspire countless thousands? That is a gift unparalleled. Forgive me for feeling that I was unworthy of the word courage.

I have been courageous. I am courageous to write about my time as a Victim. I am courageous to have ideas and to share them. I am courageous to start a business during a Depression.

You are courageous too. I am sure you can list ways you are courageous. I would like the comments on this post to be dedicated to your courage. What have you done that is courageous today?

Today my act of courage is to start planning the wedding ceremony for two young women in love. My acts of courage in life will include officiating their wedding ceremony. I do this with pride, and to honor their love and the courage it takes to stand up and proudly say, “I am Gay, I am Pagan, and I am in Love!”

Thank you for your life. Thank you for your courage.

Sharing the Dream

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.

Emotional Agony

So often, I find myself belittling my emotions. This is another practice from childhood, and it can defeat me. It sets me up for failure, infects my heart with discord, and leaves me acting as an Angry Cripple. It is a challenge to fight the urge to tell myself how little my pain matters.

recently I have been displaying some of the life long bits of my soul here, many of which bear bruises and scars. This is painful. There are over 100 posts that have been written but you will never see, because they hurt too deeply. Some have been rewritten, to remove the deepest secrets, hiding them.

I realize this is not something that is unique to me, and is instead very common especially with Women who have disabilities. A disability is anything that interferes with functions of daily living, and therefore I do count mental health issues as disabilities. Not all disabilities are so severe that you alter your life and build it around them, but, that does not mean your reactions to those “minor” disabilities have any less validity.

I am writing this post, because I have heard five times in the last two days, read it twice, and tried to deny a growing anger that these words cause this lovely statement, “Just looking at you, I realize how little my pain matters.” This is crap. This sort of thinking and self devaluement leads you down the path towards self hatred. Self hatred is usually just a mask for inner pain, layered with anger and other poisons. Stop it.

I know, my body is a very good example of what you do not want to live in. My body is not your body, and although my pain is epic to me, there is someone out there who has it worse. I can name names, I know of faces, and there are people who walk, that still have it worse than I do. My pain is equal to yours, not less, not more. Equality in Pain is a concept that I learned about when I met a girl in the mental health ward. I was actually addressing the issues of my sexual abuse, and, she tried to empathize, revealing why she was there.

To me, the reason, not revealed because of confidentiality and respect of this person, is small. It is insignificant in my estimation of abuse. To her, it was earth shattering. Her world exploded. It took me a lot longer than my stay in that facility to understand the concept offered there. What we experience shapes our views. I cannot show you what I see, but I can try and paint a picture for you.

There is no reason to compare experience. Identical Twins rarely share the same outlook in life, every person is as unique as a snowflake or a butterfly. None are identical, despite outward appearance. It is rude to devalue them or yourself based on your own experience. This brings us of course to racism, ableism, and sexism.

When you say that racism does not exist, it is not truth. It is perspective. You deny someone else’s experience and that wounds you both. You might not understand their anger at your words, and they might lose respect for you. They may not understand too a lack of experience. This does not justify your denial of racism, but, the caveat is that you can learn from the responses to such statements.

Equality is in my estimation impossible. I am an idealist however, and fight for the ideal. Someday, I might just be proven wrong. I do not remember the author though I think it was Vonnegut, but I once read a science fiction story where everyone was made equal by devices that made everyone see, hear, and think at equal levels. They even ate the same food, very bland, all people were the same. This world was horrible, everyone was in pain, tormented, and unable to function.

This was normal for those characters, until one could not be contained. He was above average, so far so that the devices could not contain him. He became violent, lashing out to try and wake the people up. It did not end well. I think of this story often when I forget why people are different.

I do not want to be just like you, and you definately do not want to be made physically equal to me. I would not wish this body on anyone. I also wouldn’t trade it for yours. I couldn’t function with another body or mind, this is what I know. Your pain is pain. Your anger is valid. Your tears, your joys, all of them have as much importance as mine.

I have said this outloud to people, before. Trying to make them stop. Sometimes people devalue their pain in an attempt to pity me. I need no pity. I am a brilliant star burning in the sky, and I know it. No person needs pity. Those who pity are merely blind to the simple fact that everyone is valid, necessary, and capable of something important.

Before you protest, stating that people with cognitive disorders cannot be productive in society, let me correct you. Autism counts as a cognitive disorder, though, it makes my world absolutely brilliant and colorful. I couldn’t trade up, just down. Downs Syndrome doesn’t make a person invalid. Every person with Downs I have met experiences more joy than I can comprehend. You point out that those in vegetative states do not add anything, and, I say bunk. What they did before their brains were injured counts. Every living person has a right to fair treatment, health care, and love.

Emotional equality too, prevents the need to debase someone, to be better than they are. It merely exists, as we do. I exist. You have the right to exist. I am angry for those who cannot see it. I mourn, for this knowlege is powerfully freeing. I dance with butterflies, I sing with the birds, I exist merely as I am and can be nothing else.

You are valid. Go love yourself.

Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

The Doom Ship

Not everyone gets to ride the Doomship. I ride, others ride, and yet I often take it for granted. What is the Doomship you ask? The Doomship is the Ship of Life, riding towards the birthday of Death. It sounds horribly dramatic and is.

Children born with serious illness are often told, “You won’t live to be 21,” Or something similar. I have a list of birthdays that have passed, my next is another Doom Birthday. When I broke my back, and it was first diagnosed I had a series of doctors tell me that my organs would fail by 25. My birthday isn’t for a few months, I was reading blogs off of the Disabled Blog Carnival and started reading Temporarily Disabled. Not only is this a great read, though with each post I tend to cry just a little for the child who was aching and the pain she has been through. She turned 26 and posted about the Doomship, sailing past into the great unknown.

With Doomship Birthdays past, it is like looking at a precipice of great unknown. I know I am going to live past 25. I am confident only due to surviving so long. These waters are familiar. I am pensive too, due to my Annual Cancer Scare. I get one a year. This time it is my reproductive system. I had my annual blood work done and my white count is high. My pap came back with abnormal cells. We’re redoing them both to verify before any panicking is done.

I waited three years before getting a pap, because no doctor would accommodate my need to not be in their perfect position, or to even help me balance on the table. I can’t do it myself. I need someone else to help heft my carcass around. I know if I do have cancer I won’t die. I will just get over it. My doctor is more worried than I am.

Right now I am surrounded by everything I have ever wanted. Not the things like the toys I never had, but the love I most desired. On my right I have Sprite, the service cat, curled up and purring against my back. She is helping me to not spasm so I can type the words out. My body is rebelling. I have on my left William drooling into my shirt, and every so often poking the keyboard with a paw to see what is so fascinating. He sleeps, then paws then sleeps a bit more.

In the other room my Person is puttering around, doing the dishes after making a meal of my choice. I had spaghetti with sausage meatballs. I haven’t had meatballs in a long time, but he made them for me, tolerating my lewd jokes. My home is clean, my bed is comfortable. My friends and family are far enough away and close enough at the same time. I even have high speed internet to keep me amused on those days when movement is unacceptable.

The Doomship sails on, the waves splash, the thunder crashes, and my life flashes before my eyes, but, it is the life I am living that I am proud of. Not the memories, not the past. It is my future that holds me in it’s sway. I reach for it, sitting in the prow, praying to my gods, listening to the world, and taking part in changing it.

I write something every day, and each time it is self discovery. I discovered I can write non fiction. I never knew I could. I know the mechanics of writing are sound, as I sell fiction periodically, and write it almost daily. It is merely the fear of my life that has held me back. I feared upsetting those with the power over my life and death. I am now the Captain of my Doomship. I mutinied.

So, as I rest, my ship swaying, I look out and see that everyone else is in a Doomship too, they just do not know it. They do not prepare, they do not adapt. They aren’t aware that they have to. Red sky in morning sailor take warning, the storm is coming and the night is humming… wait not for the red sky at night, for on the Doomship there is no Sailor’s Delight.

Violence (Trigger Warning)

I keep rewriting this post. Violence is bad. We all know this. Violence is often celebrated in our culture. In the US most of the television shows, even for children, include some sort of violence or attempt to teach children what boys do and what girls do. Girls like fashion, pink, and hair. Boys like to fight, are great leaders, and work. Bull pucky. The media also rarely illustrates that women can be violent.

I am capable of killing. I am not capable of murder. I know that if I had to kill someone to defend myself or the ones I love, I could. I discovered this when I was young. I am very loyal, it is a part of my nature to protect people. This does come from my history with violent abuse. If I could take the pain then I could save my sister or brother. They used to do that as well. Each one of us did our best to be the only one in pain. I am capable of killing, but, I never have.

I have had run ins with so many things, my life sometimes reads like a fiction novel. I never used to think about writing nonfiction, so afraid of being told I had dreamed it all. My biological mother and I talked on the phone today, partially about violence. The violence of doctors.

When I was eight I began to see a psychologist. After the first meeting they handed my mother a prescription for Zoloft. The pills made me sleepy. I hated taking them, because I couldn’t think. My father was still around, and taking the pills at his house always meant more pain. My reflexes were already slow, how could I fight back? I mentioned this to my doctor and the threat came. “If you do not take your pills you will be locked up with the other worthless children.” This doctor was a man, I remember falling silent, wishing to tell my mother. He threatened too that if I told her that she would be sent away, abandoning the others. I took the pills.

This man is no longer a doctor, he tried this on a competent adult a few years ago. There was a scandal, it made the papers. This was just after I fired him. He was the first doctor I fired. I spent years after that taking more and more pills. At one time I was on six antidepressants, an anti psychotic, an anti epileptic medication that they thought would make me not depressed, birth control pills to try and force my body to have a period, and a few other things.

When I threw up, I had to take a second dose. Doctor’s orders. There are chunks of my life lost not just to suppressed memories but to my brain shutting down from the constant overdose. Most of the medications I was on were not approved for children, just adults over the age of eighteen. I reacted to most of them. Being allergic to so much, that is no surprise. Throwing up, bleeding with each dose, and hallucinations weren’t big enough side effects to be taken off of the drugs.

I was more violent during that time, as they tried to fix a chemical imbalance that did not exist, due to the drugs. They are not the only reason I lashed out at the world. Abuse does that, it teaches people to strike before they get hurt. I barely remember assaulting my best friend in High School. She touched my sandwich and teased me for it. I remember the anger and seeing her on the floor but not the act of hitting her in the head with a chunk of wood.

This was caught on film, there were witnesses. I went into a psychotic rage over food. I have some serious food issues, and I thought she was going to take my food. The fear of being deprived was so strong, that I had to protect myself. This was what I knew, I never knew people could share. I was a beast, primal in my reactions. She did not suffer permanent damage but was hospitalized for it. This lead to the only psychiatric hospitalization that benefited me. Hospital hiding the institution, feeding on itself and drugging children. Teaching them first hand who Nurse Ratchet was.

The reason being I finally needed help. I was shunted around the state, with my history and diagnoses no one wanted to treat me. It feels familiar at times with doctors, sending needles into my heart. I was misdiagnosed with mental health conditions. One to explain every disability. I was accused of things, such as self mutilation that came from my disabilities. I was lazy, I was stupid, I was just not good enough. Years of that, a decade in fact, of being told how worthless I was by doctors and I did not trust them.

I was sent to an experimental facility. The Ranch, as my family calls it, was a peer support program. We did see therapists, and we did have medication given to us but we lived in a boarding school environment. The program depended on it’s recipients to function. This made a difference, as I found people my age I could talk to. This was a first. I also learned I was not alone. At the other facilities you were shoved in until you behaved for three days or so, then went home. In and out like a yo yo.

Each of the children at the Ranch had been in and out as well. Most were not from New Mexico, but a few of us were granted access to keep diversity up. There was violence there, though there was also nature. The Ranch is the only place I have ever been able to drink the water. The water came straight out of the ground. The first thing the doctors did was take me off all of my meds. They gave me two months before they started me on another. They came so close to freeing me from my shackles of medication. The medicine they put me on did change things, it seemed to reverse some of the damage to my brain from the drugs that came before. I stopped losing my hair, I gained some weight and lost some girth. I even began to smile sometimes.

I also met horses. I was one with nature there. There was silence at times, and there was bonding. That was where I learned I could love. The fact is, my father was a diagnosed psychopath. Even knowing this these “great” doctors did not seem to consider that my behavior was environmental. The ranch is where I learned about PTSD. It is also where I learned that flashbacks were not just my burden.

One of the other dorms, full of boys, found a dog. I was triggered when the dog came to us bleeding. The flashback lasted for six hours. I relieved my father killing people’s pets because I liked them. I still cannot go into detail on those horrors without triggering myself. This poor dog was hungry, lost in the middle of no where, and then was assaulted. When he came to our dorm, my brain left. I woke up, and found that the world had for once stopped for me.

This was my turning point. It wasn’t being threatened with institutionalization in the adult hospital, it wasn’t the new drug. It was coming back to myself and finding that every girl had stopped what they were doing, had sat in a circle around me and the dog to which I was clinging and waited. When I stopped screaming, apparently I had been, my roommate asked what happened. When I told them, no one told me I lied, no one told me it was my fault. The first time in my life, someone hugged me and cried with me. No one punished me for needing help, a first in my life.

I was on the cusp of adulthood when this finally happened. I was about to reach a point of no return, trapped in the system. They saved me from my violence, and I saved them in turn. I love each of those girls still. Someday I may cross their paths again, though I do not plan to admit it to them if I do. We each deserve the right to deny our childhoods to an extent.

I spent my childhood dying daily. I am certain that not every therapist was bad, I do not remember them if they were not. I only remember the incidents of threat, of lies, and of burden. Child psychologists often can get away with crimes and breaking the rules of conduct that their profession has. Not all of them do, but, an adult has power over a child. A psychologist is alone for at least an hour with a child, and some of them abuse this power. I had one who found out I would turn on her like a dog hit one too many times. She spent the sessions telling me about her husband’s erectile dysfunction, and telling me I was fat. The male doctor who gave me the pills threatened me each time with different torments. One of the other psychologists took part in encouraging the children at my school to burn me at the stake.

It is no wonder that I hated the world. Until the ranch only a few teachers had ever shown me adults could manage to not hurt me. Each of them saved a part of my soul, saved a fragment of hope from the violence. My mother did try, but, it seemed hopeless that any of her children would turn out to be a healthy adult. How could we? She wasn’t. We only knew violence.

Perhaps the violence I know tempered me? I doubt it. I believe it was the small bits of love I could find. I do not believe the Ranch did all the work in saving me, I think instead they unburied the ground work set by another.

After Toastmasters I will write of my first Sensei, I will tell you of my time as Little Lotus and how the Batman was my father until I was six. It sounds silly, and the fantasy was. It still held violence but my Sensei taught me ways to thrive, not just survive. I will also write about my experience with hate and nearly being burned as a witch.

We, the subjects of oppression are forbidden anger, we are forbidden violence. Even when it is used against us, violence is often attributed to us. Those with mental health issues, mental disabilities, and physical disabilities are vulnerable to violence in unique ways. When defending ourselves we are demonized. Women who show anger are told to simmer down, they are told that their anger is inappropriate. Some are raped to control their power, to try and punish them for anger. Persons of Color of any gender are also forbidden anger. The stereotypes tell how violent they are, and yet when a man is shot down for his skin color and people get angry, the murdering cops get away with it because the people get angry.

Violence is all around us, it is on the TV, it is in books, it is in my beloved comic books. Violence is in our history. It is sadly in our future. I mourn for all the children and those who once were children who know violence. The kiss of violence is the scar of fear, the spectre of disillusionment, and the taste of bitterness that shatters dreams.

Violence is the most horrifying entity that has ever been introduced into society. Violence is not a part of human nature, it was taught. We learned it from somewhere. Violence is not never ending. The cycle can be broken. I have broken the cycle in my family. Even when attacked I try to protect myself without violence. How do you survive violence? How do you endure?

Anger is violent. Violence is a poison. My antidote for violence is to sing, to write, or to create something. To be violent is to become what you fear. Fear can turn to anger, anger turns into violence. The cycle swirls around. I created this post not just to educate, but to share. I want to share my peace. In order to do that, you must see my pain too. I fear these words most of all, therefore I offer them up to transform and fly into the universe like butterflies, unlocking the caged minds of others. I write these words not with anger, but with sorrow for who I was, mourning for the death of innocence as I knew it, and with love. The love is not just for myself, though I truly love myself. It is Wishing Love, I wish love upon each and every person in this world.

I wish love upon you, for whoever you are you do deserve love. I may know you, I may not. I embrace you with my soul. I offer you a haven of knowledge, a haven of peace, and a haven of change. I am a butterfly. Here you too may learn to fly.

Post Traumatic Stress Disorder and Advocacy (Trigger Warning)

In conversation with one of my young friends I had a revelation. This was about thirty seconds ago. Sometimes advocating triggers flashbacks while I am trying to function. My mind lept then to other people who have to self advocate through PTSD symptoms. It isn’t always a flash back. If you do not have PTSD it might be harder for you to understand being jerked around by past trauma. Therefore I am going to explain, and this is why there is a trigger warning on this post. Sometimes reading about PTSD or other issue related things can trigger people.

This is not from the DSM (Diagnostic Manual thingy) but is from my experience. I may leave things out that apply to you or tell you things that don’t. The problem with labels is they are often not enough to truly explain what something means. Lets say someone shoots a gun. My first impulse is to be very still, not breathing, and praying that my father won’t make the shot. Even typing that sentence my head went into the land of fuzz and my chest is tight. I am taking slow breaths to focus and clear my mind. The trigger is not always a gun but just a loud pop. My brain is stuck on certain points of the abuse I suffered, it has a programmed loop that it likes to play. I have warning symptoms for my flashbacks now, and can often circumvent them.

My reality is in jeopardy from these loops. the weakest symptom is a tingle, intense fear, sometimes I start randomly bleeding. Why do I bleed? One theory a psychologist offered is somatic symptomalogy. Basically my body remembers, and it reacts so strongly to what my brain signals, that it thinks it is injured. This adds to the pain I feel. The pain from invisible injuries is far from phantom. I feel it. The next step after that is the sensation that I am floating, I disassociate and can see the entire world, but I am not connected to it. Usually I then go back in time. I see and feel at the same time, from multiple vantage points my father with his brand new gun, me and my siblings on the couch. I feel the cold metal of the gun pressing against my forehead. My nose stings with the tears I cannot shed.

The loud bang comes, I feel the heat of the bullet, my skin is burned by muzzle flash and I feel a horrible pain as the bullet grazes my temple. I don’t move. I don’t scream. I just stare up into that black hole, smoke pouring out of it and avoid looking into my father’s eyes, knowing he is going to be angry that he missed. I hear every word he screams again, how worthless I am, how I should be dead and must have moved. My sister starts to scream, my brother too but I can’t move. I look into his eyes and I see the blackness.

I still do not remember what happens next, though I have been told he decided to shoot at my sister, but I pushed her aside. I just know he tried to shoot his children, sitting on a couch that smelled like pee, and nearly killed his neighbor because the bullet went off. The cops were called but I took the blame. I said I was playing with his gun when it went off. I lied, to survive.

When I come back to myself I always want to vomit. Instead I focus on breathing. If the nausea is really bad I will take some Rolaids. Sometimes now, after years of effort, I let myself cry. Usually I manage a tear but my brain has yet to grasp the concept of tears. If I am not at home, it is worse to recover. At home I control my environment, I have a bed to curl up in, two soft fluffy cats, and my Person can go elsewhere more easily giving me the time I need to recover.

When I am advocating and flash back, I never know what to do. I try different things, and usually they work but the vulnerability can be debilitating. I flashed back my first time having to seriously advocate to that scene. That is why I chose to relate it to try and explain what PTSD is like. I wish I had simpler words but none can encapsulate just how much there is to it. Sometimes the flashes are different, sometimes I am still an adult but I am trapped, it is worse in some ways because I still feel the pain but I am completely aware that my world has vanished. I am never certain if I am going to hurt someone. I have before, but it has been a long time.

That first taste of advocacy was so bitter. The cops came, and one fondled his gun and my brain shut down. I was afraid, in pain and exhausted. I was being yelled at and deprived of my prescription because I needed my service animal. The cops even saw Sprite follow her training. When I flash she has three tasks, beyond her instinct to comfort me. First, she signals to my Person for help. Sometimes a conversation can end it. So she chirruped at the person of the day, and I had to form the words, “I need you to deal with them for me. I can’t.” Then, she helps me to sit. I had to wait fifteen minutes for a chair, I wanted to scream at them but I tried to stay calm. I was hyperventilating, they took this as my being dramatic. Then, she moves to my shoulder. Her instinct is to sit on my chest, but she might get flung there, I do not handle pressure on my chest well even when not panicking or flashing. Her instincts tell her to purr, to rub with just her face against mine. This grounds me.

The police threatened to arrest me if I did not leave the facility. I knew enough to know they couldn’t but they refused to acknowledge that I had rights. I couldn’t fight, but I had to. I chose then to repeat the law over and over. I couldn’t think, I couldn’t see their real faces for half the time. All I saw was my father and his eyes that reflected no light.

What can you do if you have PTSD and are an advocate? Here is the how to portion.

Step 1. Before you get to the point of advocating, have a support structure. This is a difficult process, because not every person can truly understand what it is to lose your reality. You need to have someone you trust availible, at least to call.

Step 2. If you have medications used to treat the symptoms of your PTSD in an emergency make sure to carry them with you, to keep a back up dose with your support person, and to keep your doctors number handy.

Step 3. Create a kit of items that help forestall your flashbacks. Nothing works for me beyond my cat. I can give her the signal she is trained for when i feel the warnings coming and ground. This is all I have right now, beyond my Person. No meds, just those two.

Step 4. Remember to breathe. Sometimes if you focus on just breathing you can help yourself.

Step 5. If you flash back during advocacy, try and focus on the responses that do not match the memory. This has worked for others, pulling them out.

Step 6. Advocate anyway. I did get the illegal policy over turned at the Pharmacy where I was threatened with arrest. I had to fight for a long time to do it, but, they relented. It is worth it even though it you might feel endangered or might BE endangered by your flashbacks.

Step 7. If you have to, stop. This opposes Step 6. Not every incident can be worked through. You might need to call your therapist, you might need to let your support person advocate for you. This is not a failing, this is merely the team network that advocacy should be.

I am glad to write this how to. I never considered how important it could be, but, in my mind my broken back, my asthma, and my failing eyes are not my most dangerous disability. The worst disability I have is PTSD. At times during flashbacks I have hurt myself, my friends, and reliving the painful memories can also cost me emotional, physical, or mental progress.

Keep in mind the time you are most fragile is just after a flash back. Some people can be triggered more easily, often it is easier to react in rage. Do not minimize your pain either. It is okay to cry, scream, and sometimes to just walk away.

I have done all of the above. Not every incident with advocating will cause a flashback either. Most of my time advocating I am left with memories of victory. My first taste of advocacy is as sweet as it is bitter, because I still succeeded, despite my unabiding terror of these men. My greatest cause was also revealed to me. I am actively fighting to get the local police trained in how to deal with enforcing the ADA. I want my rights protected, I do not want to fear being put in jail, dumped out of my wheelchair and my service animal being put into Animal Control’s care.

That was the threat, and so often is. My heart goes out to any other advocates who suffer from PTSD. I know each person’s PTSD is varied, some may not flash back, some might just panic. Others might not be able to stop their flashes. You can still advocate. Just prepare yourself as best you can.

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