Why Bullying isn’t Healthy for ANYONE, a post intended for Karen Kabaki Sisto (Trigger warning for everyone else also I cussed a bit))

I know I have not posted in some time but the surgery I had and slew of failgivers and bad agency issues took my writing spoons for survival. I am just getting settled with my new carer from a new agency and this article has come out that I cannot even finish. This post like most of what I write has a trigger warning for a reason.  Here is the article by the person I am chewing out below.

Dear Karen-

I am calling you out. The initial title of this post? You better run bitch. Why? The internet is coming for you. You see you did something stupid. You wrote an article that promotes bullying. The idea that bullying is acceptable for anyone is already disproven. Children die daily because they cannot endure bullying and the pain it is caused. These are not just autistic children but children across the human spectrum, some of whom fall into the category of normal. People of all ages are bullied for skin color, eye color, hair color, weight, ability, and so many things I cannot list it all. Bullying is always arbitrary and boils down to psychological trauma that sometimes never heals. It shatters confidence.

The article, as far as I could read sounded like my mother. I deserved to be bullied because it would make me stronger. I was weak because I couldn’t take the pain. That is bullshit. I am not weak. Medically, I admit I am, but mentally I have dealt with things people should never be able to imagine coping with, and I am still alive. I have spent my life aware of death itself because of my body and more so my family. My family of monsters. I am angry this was written because there will be people who do not think before they act, and will traumatize already fragile people. Autistics get bullied all the time, this simply removes potential resources. Of course this is also from the people who created the ABA system of abuse. They call it therapy but I mean mother fucking abuse.

In the end I cannot stand by and be silent on this. Bullying caused me to cut myself. With my medical conditions this could be fatal. I thought between my parents and the other children I deserved pain. I thought that if I cut myself maybe they would stop. If I hurt just a little more I would be purified by that pain and worthy. Some of this is through the lense of absurd religion but not all of it is. I am crying as I write this because I know out there people are dying a slow death from bullying and this article will cost them dearly. I am crying because I cannot protect them if I am silent. So I am roaring.

Here are ten effects of bullying regardless of autism.

1. PTSD- Post Traumatic stress is not a choice there is no pushing through it and it can forever undermine self confidence. Avoiding triggers is the treatment, and like avoiding allergens to not die or spontaneously combust into hives and anaphalaxis this is not really effective because its impossible. Anything around at the trauma from a scent, lighting, touch, voice, words, or even clothing can become a trigger and you will not know until you find out the hard way.

2. Lowered Confidence- Confident people succeed. We do. I had to rebuild myself and am lucky I could but not everyone is able to do that with or without help.

3. Depression- This too can feed lowered confidence and can get you bullied. Don’t feel u p to anything because you hurt so much and are sad? People WILL bully you for that. Depression is hard to live with and bullying is a cause. Depression is also painful and often causes people to kill themselves.

4. Lower grades- You do notlearn when afraid, you learn less when stressed. There must be a safe place for people to go to learn. Living without one creates a priority of survival not education. You can’t focus on algebra because you are focused on not sitting wrongly, or the physical threats that bullying can entail. Sometimes people even drop out.

5. Social Isolation- Bullying makes it harder to make friends. Cliques aka human herds are social. While not every autistic is social many are, and this deprives them of the opportunity to make friends, to learn because a bully takes out your friends too. No one wants to endanger themselves for a stranger. Sometimes not for people they know. Bullies are dangerous, predators even.

6. Health issues- Bullied for weight? Well you may just end up anorexic. Bullied with physical violence? You could end up with serious physical trauma that disables you. It can also be BOTH THINGS. Bullying can even cause sexual dysfunction, increase the trauma of having puberty, and living in stress is also just bad for you. Hypertension, heart issues, bad diet, inability to sleep just to name a few.

7. Violent Retaliation- I have written about it before, but I nearly blew up my high school to kill everyone so allthe pain stopped. I also realized this was not healthy and stopped myself. Not everyone has that ability and sometimes these victims make more victims in a violence chain reaction. School shootings, the shooters are often bullied. This isn’t once or twice. Its not “Just Columbine”. Its also not always so clear cut. I became so afraid of bullies and had no safe home and ended up hurting the only friend I made before I was an adult because I didn’t have the ability to think past the fear and she touched my food. Yes I was also abused at home but a lot of bullied kids are, not just the bullies and sometimes those bullies have healthy home lives despite what the Film Industry/TV Industry tropes are.

8. Alchohol and Drug Abuse- Oddly bullies tend to be more prone to drug and alchohol abuse in some studies than their victims but compared to non bullies/bullied people both parties are much more likely to drink. Bullying is not just bad for the victim but creates bad mental hygiene for a life time.

9. Criminal Records- I can vote because my mistake of assaulting my friend came at the right age but not everyone is so lucky to get help and both violent responders to bullying and bullies still have to live with the consequences of their actions and reactions for life. I can’t forget, even with two brain injuries, the realization that I nearly killed my friend. I have to live with that feeling forever. Any time I think of her, it is there. A reformed bully joins me there but often they continue to escalate into other criminal behaviors, as bullying is another word for assault in MANY areas.

10. Missed Opportunities- Bullies and their victims both miss opportunities. Later in life the victim may be successful, needing to hire someone. The bully applies and… I would not hire them if I was in HR. This applies to non work things too. I have forgone games and social outings because an abuser/bully was there. Sometimes I tell the bully/abuser to fuck off, but I am an adult and aware of my power. I am the rare person who despite all of the crap they endured is able to do so. Its not common.

I am I think the sort of person who inspired this false and illogical article. I am strong. I am tough. I kick asses and take names. I push myself and sometimes I can’t get past the bullying. It still hurts me. That isn’t stronger. Stronger would be less of that. If I had not been bullied at school I would have had a refuge. Not having that? I tried to kill myself a few times and failed. I didn’t get found or helped, I just didn’t do it right. I am glad of that but telling me that I am stronger because of this is an insult to my intelligence, common sense, and every autist on the planet. I understand the writer wants to justify their being a bully, but I hope ANYONE with children near them runs, because this isn’t a red flag. This is a sign that reads: I am an abuser. I will hurt you. I will hurt the ones you love. I will forever scar the minds of innocents. I am also not qualified for anything. Not even McDonalds.

No one should be bullied. Autistic children are much more vulnerable, as we still cannot even be guaranteed education, access or care. We are discriminated against at all levels. I have been denied access to medications because of autism, endangering my life. I have been denied access to necessary law enforcement. Autistics are already trained to obey everyone, by ABA which the author supports. We can ill afford more of the same. It is much arder to stand up and say no. A lot of the reason Autistics struggle with these things swings back to being bullied. Bullying is abuse. Calling abuse healthy is assinine. A lot of this post was edited to remove the word fuck and many other unfriendly epithets to the originator of that piece of shit article. I am still cursing in it because frankly, that fucking piece of trash article deserves to be called exactly what it is.

Karen Kabaki Sisto M.S. CCC-SLP I hope you read this. I hope you understand that this paragraph was originally cursing and I hope you learn something. Bullying doesn’t give any perks. Putting the burden of the victim on making it about team work, autism awareness every month, claiming we learn verbal skills when we are terrified of being harmed, grow stronger, gain friends, and a better well being shows me you have NOT looked at the effects of bullying at all and are either high or stupid. Self Esteem is often low in autistic children because of bullying. Please, quit your job. This is not said lightly but quit your job. You don’t belong near vulnerable people.

I will be blogging extensively about your article and I hope you get this on your “other folder.” I also hope you read my article. As an autistic adult I am more qualified than you are to deal with autism and you have proven to be the least qualified hack  since Jenny McCarthy. For your education here is a link from me to you, about the risks associated with bullying. I didn’t consult it, because I know them by living them.

Karma (Trigger Warning)

Do unto others as they shall do unto you. What goes around comes around. Karma in the western world has been described to be swift and almost instant. Traditionally as you trace it’s origin back Karma becomes something for the next life. If you work hard and are good in this life, in your next life you will have happiness, freedom from pain, and joy. You may end up as an animal. a bug, or a human. Humanity supposedly is the top of the spiritual totem pole before you reach ascension.

This is a super watered down explanation of Karma but without researching Karma itself and the religions that teach it, this is likely all you will learn. I have heard my entire life how evil I must be. In Christianity it was whispers about my mother, that she did something to deserve a heinous child like me. When I started practicing Buddhism and learning about every religion I could in my quest to find what I could believe in? I was told over and over I did something in my past life and this is part of my Karmic reward.

Horrible pain, repeat abuse, being treated as a subhuman. Yep. This is all self inflicted. I chose through actions that have been described to me as ranging from being a thief through murdering babies. The extremeness of the crime varying depending on whomever was trying to translate my Karma for me’s perspective on disability. Not once was I told anything good about me now. Based on past transgressions I am convicted without evidence, merely the hearsay of my spine and brain.

In this moment I am questioning my faith. I cannot stop it. I am angry with those who teach religion. Jaded16 posted a commentary on Womanist Musings about Shakti, which is power. She questions her religion. I have written countless times about how many times my asking questions to understand has caused others to reject me and now I am rejecting Karma. I do not believe that Karma is being taught properly.

For as long as I can remember I have loved before anything else. I have been swift to open my heart and even through the built up pain and the slow burning hatred of family that has developed, the distrust of others, I still love before all else. I tried to stop this once, and it nearly killed me. I don’t want bad things to happen to people. I work so hard to hide this part of me that I have a front of violence to protect my heart.

If I was born with this capacity to love, then how could I be some monster in a past life? Why would I be punished now when I love? This is not logical for me. I think of all the love I have tried to give or even just kindness, respect, or acknowledgment of humanity and all I have received from the majority is a statement that I am evil, a demon, or deserving of punishment.

Karma is disability hatred. Karma is being used as an excuse to debase people based on some small flaw, the flaw in the eye of the beholder. Karma is used to reject the fact that I am a person and it is used to excuse those that harm me.

Karma, I believe in some of the concepts but not that I am cursed by a past life. I cannot believe so and love myself. I am tired of feeling as if by feeling love I am going to be attacked. I can name many people I love, yet I cannot admit it out loud. I am so terrified that by loving someone or something it will either hurt me or be taken away that I can barely commit to a new cat in my life. The only reason I could do this was for Sprite’s well being. Even then I had a clause set out in case the commitment was too much. Incase I failed to love.

In my life I have had my defenses taken from me. I have been told many times to not fight back against oppressors lest they oppress me further. I have been told it is wrong to steal food when I am starving because I may go hungry in my future. There is no future if I am beaten to death or die from starvation. I have been told I am not a person because my body marks me as Other.

All of this under the word Karma. It is the same as when my father raped me in the name of the Christian God. God wanted him to wound me physically so that I now am worried about dating because I will have to explain the scars on the inside of my body if I allow another penis or fingers inside of me. If I make love to someone first I must expose my most vulnerable self to them in a way that I can barely write out. I must find those words and risk rejection because of our victim blaming rape culture.

When I am told that Karma will take care of those who wound me, I am being told that I shouldn’t bother trying to escape my “fate”. I am being told that I shouldn’t speak up. I am being told that I shouldn’t argue for my energy or health. I am being told that I am guilty if I do what is right for me.

I have realized more internalized abuse. I am too flexible with people, allowing them to stay in my life because they may suffer if I push back. Lately this has shown up clearest with caregivers. Each one has had an excuse for why it’s okay for me to be left in a state where it is clear they are not doing their job. “If you speak out my child will suffer.” “I will lose my job and have to quit school.” “It’s just this once, don’t say anything it was a mistake.” “If you report me, it’s bad Karma.”

Caregiverrs have said each of these things to me. Each one has goaded me because they are a human. I am expected to hunger, to feel pain, to lose things, to have my life be a shambles for their convenience. I am expected to pity my mother for choosing to eschew her education and her choice to embrace the very abuses that her own religion preaches instead of thinking. I am expected to pity someone for being less intelligent than I am.

I am tired of having to waste my energy on someone else’s conception of Karma. I no longer accept this entity called Karma. I will have another name for my beliefs. I wlll not accept the idea that your choices impacting you is my fault. I will not settle for second best. I am aware that I am intelligent and I will seek intelligence. If my body is in pain due to Karma, I did not deserve the abuses that put me into this state. It is the Karma waiting for others that they will face. It is my choice in how I deal with it but my disabilities are a marker of my survival. They are the war wounds of a soldier in a vicious battle that is pushed aside often for the comfort of others.

I am declaring war on this misinterpretation of Karma. No longer will I be told that this is my doing, that I chose to be beaten, starved, and broken. I will instead push those people away. I have people in my life like M that do not think I am a product of Karma, that love me. It is time for me to cut off people who aren’t worth my time.

I want to have more energy to talk with my friends, many of whom I have met through this blog. I want to have more energy to support them in their endeavors, and to succeed in my own. I want to have time to explore the world, and I want to have adventures again. I don’t give a (censored) about your feelings anymore abusers. I have to love me too. Loving me means leaving you to face your own version of Karma as cause and effect bite you in your butt. I will no longer deny that I like softer feelings of love, sometimes like pink, and truly relish my label of cat lady. I chose that label. I have desired it since I was a child.

I will embrace my creativity, even if it means someone is uncomfortable with what I choose to do. I will paint my walls red if I want to. I will sing. I will dance. I will not accommodate anyone else, because the people that matter don’t need accommodation that costs me anything and therefore I will meet their needs without even trying. I will not try and stretch myself to oblivion tolerating you. You can stay away unless you actually know how to learn. Only people who want knowledge are welcome in my life.

Rogue Agent (Trigger Warning)

RageOMatic asked me a question on my last post that I had not been able to answer. I was trying to find the answer, and for the last week or so had thought on this daily. Tonight the answer hit me.

First here is the comment that he left:

How do I step out of the cycle on this one, Kat? If I start crying for all the abuse in the world, I’ll never stop crying again. (Ultimately, I think I don’t cry for the same reason you don’t scream…no compelling reason to stop.) How am I supposed to feel? What should I do? How do you need me, an able bodied, white male, to respond to you?

I think the most profound thing you have said to me, so far, is “I am a rogue agent in the cycle of abuse”. Abuse reshapes your soul to either be sheep or wolf, the abused or the abusee. My grandparents, my parents, my older brothers and sisters, all got the same “training” I did to avoid being harmed by being the harmer, but I stepped out of the cycle.

When I read about the pain you are in, emotional and physical, the wolf wakes up. I want to find the abusers and abuse them. You are not my only friend who carries scars on her body and soul from abuse. I want to find people, and choke them. I want to see in their eyes the look they have so frequently caused in others: the moment when one realizes no fight, no strategy, no inner strength, no god, no anything, will save one…only the whim of the abuser.

I know that’s wrong…so I push those thoughts away. Now I have to fight the sheep. the first thing the sheep mindset says is what you describe is only horrible if its true. If you are lying to get attention, then you become someone lying to get attention. That’s disturbing of course, not nearly so disturbing as the truth of what happened to you. It’s so much easier to believe a woman was only abused enough to lie about the abuse, and not so abused as to be accurately describing its toll on her. Then, the second part of the sheep mindset…well even those parts that are true aren’t that bad…because abuse makes you stronger!

And with a snap, I’ve minimalized your pain, and said you are lucky to have it. All three ways, I’m agreeing with the abuser: (1.) Abuse is a good way to motivate people. (2.) It’s the victims moral flaw and not the abuser’s. (3.) It’s good for victim anyway.

First I want to respond to this comment because this comment is so multilayered. Then I will explain how I was given the answer by M, my dear dear friend who often lights the way on my path when I am confused.

First, Abuse does not make you a sheep or a wolf but instead a victim or a predator. Often both. The Sheep and Wolf metaphor is a part of the mind playing into the lies we are told and sometimes tell ourselves to cope with abuse. It’s okay to just be a person, even if it means you are a person that has been hurt.

Stepping out of the cycle of violence is the most dangerous act a victim can make, and frankly I don’t believe that a person who has taken on the role of abuser can stop, because then they are letting go of a mispercieved “power”. This is an opinion I hope is wrong but it is based on my experiences and some of the challenges I faced when I tried to be the abuser. I did make that choice and those memories and choices are the few things in this life I actually and actively regret.

I understand wanting revenge. In fact, I will be upfront with you on this, if I ever meet my exhusband again I will kill him. If my father rises from the dead as a Zombie I am sure as hell going to take him out. If my Grandmother ever speaks to me again she will meet the wall of silence that I have decided is all she deserves from me. For her that is a fate worse than death. Revenge can be a great motivator for changing patterns. It can be the carrot, if I am alive, living well, this torments them.

Revenge can be a reason to not die. It has it’s purpose but revenge cannot be the only reason you live or you start to poison yourself. Eventually you have to find something past it. In fact my statements above are less about revenge and more about protecting myself. I am not going to seek out my exhusband, because that would be self abuse. I will defend myself and if he dies in the process which I beleive would be a necessity, then I am in the right. My father as a zombie? Off with his head. He’d be eating brains, so since I have one, again self defense. With my grandmother, this choice is difficult because I am aware it causes her pain. I decided that minimizing my pain and regret factor is worth her suffering, because in reality nothing I can say or do will stop her fear of dying alone and the cycle of abuse that follows when she realizes that someone may just want something from her, her other fears feeding into her personal cycle.

Another element to wanting to seek and destroy the abusers is two fold. 1. Having been a victim, it protects you from being victimized by them. 2. An element of this is wanting to protect other people. Neither of these things is actually bad, but when you are raised in a world where self preservation is something “sinful” and you are taught to fear it, you will lie to yourself about the why. I still do and have to actively catch myself and correct the thoughts. Knowing someone is hurting at the hands of others hurts because of the human collective. This is why I cry when I hear about bombings, murders, and child abuse. It hurts me emotionally.

In fact I believe that the factors I listed above actually are the cause of this current war in Iraq. The emotions of the people in my country were played with so that abusers could go and hurt people in the name of protection. 9-11 was actually around the time of my self awakening, and I believe that the abuses and lies by the US government played a part in this, because they were the same sort of lies my father told us about other people (specifically people of color or other minority factors).

I don’t think you want to see their pain so much as you want to prevent it, but I may be wrong. However, that was my personal truth, and it may take some digging through the layers of feeling masks to find out what your personal truth is. When feelings are forbidden, it is natural and “healthy” to put a mask on. It’s a survival instinct. It stops being healthy when the situation goes away. Some people perpetuate the abuse because they don’t know how to function without it. Some tell themselves they like or deserve it and seek it out. Then another set of Victims and Abusers come into play.

This is part of stopping the internal cycle that is hard. No one can see your thoughts but you. I had to retrain my reactions to people. On top of this I had to learn to deal with PTSD, and I had to learn things that I know now are basics for small children. No hitting. No biting. Sharing. I still am fairly awful at sharing. I wasn’t just developmentally delayed or socially delayed but my parents emotionally stunted my growth without thought of what this would do for me socially. Social skills are something abusers take away and I am still mastering some of them. (The Autism plays a part in this, but not as much of a part as most people think.)

What you call the sheep mindset is a response to programming. I always called it trying to eject the tapes, because I noticed for me the voices in my head were of my abusers. The lies that I told myself were mine, belonged to my parents. As Victims we first learn to minimize our own pain, and the post you questioned me on was an excercise in not minimizing things. I still did to a level and may someday write part two of that post but I am not there yet. Instead of punishing yourself for “Agreeing with the abuser” try relabeling things. When you think a thought you know is toxic tell yourself to stop and state the truth.

This is a method I think I found in one of my mother’s many self help books. Most of them to me were worthless but I remembered either reading or hearing about this method and it seemed reasonable. I don’t know what I read but what I did was carry around a small notebook, a tiny pen, and I would make a page for every day, then I would make a line for each bad thought I had to correct. The first day I used four of those tiny notebooks at least. Every thought I had was really repetition and regurgitation of abuse. I had to give myself a goal to do this because it is hard. So I told myself that once I went a week without having to correct myself I would get a soda from the school vending machine. Admittedly I had to steal the money to do it so it wasn’t a perfect scheme but it was a goal.

I then had to make the goal realistic and aimed that I would only use one page in a month. It took years. I actually left the school I was in before then, was sent away to a mental hospital, kicked out of that mental hospital, sent to an exclusive school for broken children (my mother’s words), and was allowed to return home before I managed it. That means it took me over two years.

I didn’t realize until last year when I was writing one of the many unpublished things I putter on that I had really taught myself how to think. The cycle of abuse works because we become afraid of thought itself. Thought shows on your face, it brings up those feelings that make the pain come, and so you must only think safe things. Add in an omnipotent being that has hated you from the womb, something you and I share, and you have no reason to actually think or learn or do anything but what you are programmed to do. This is brainwashing. Admitting that makes me want to cry a little, because it’s something else that I know falls into that spot where I want to dismiss it.

Your statement of steps is active abuse, even if you don’t share it and don’t act on it. I will state you are the victim and abuser when this is all in your head, because it hurts you. If I am unaware that you had these thoughts and even with the awareness I am not actually harmed or the harm is much less than what you have as you have then entered your own self hate and punishment cycle, if I am guessing correctly. I still do at times. I am practicing not giving in there, and though I no longer carry around a notebook I still have to stop myself at times. If I am alone sometimes I will shout at myself in the mirror, arguing with those tapes. sometimes seeing that I am really a person and not a valueless fleshpile makes it easier to stop them.

I also want you to keep in mind that the tapes are a part of what makes PTSD work, and I don;’t know if they can ever go away. You may sheer the sheep but wool grows. This is a life long goal and fight.

Now the truths about the lies that you asked about

1. Abuse has never motivated anyone. If anything that omnipresent sense of dread that is in all my memories up until my adulthood and sometimes thereafter made me want to not move, not breathe and live. Abuse is the best demotivator.

2. Sometimes the victims have yet to speak, this would mean that everything is morally bankrupt, and with good people in the world such as you, even when you don’t believe it or M who keeps me from forgetting I am a person on my worst days this cannot be true. There would not be cats like Sprite, there would not be disability benefits, and there would not be medicine if everything was flawed and evil.

3. If it were good for the victim it wouldn’t break people and have people die. This does not mean those victims were weak but instead that they just broke.

Stepping out of the cycle here is possible. I think this is the hardest part of the cycle of abuse. I had to learn to love myself. I could think for myself once I knew I deserved to do so. Not just that I deserved my thoughts but that my thoughts are things of beauty even if there is a bit of tragedy with in many of the experiences I have had.

You are supposed to feel as you feel. Feelings simply are. Anger is not a bad emotion if you do not weaponize it. Anger simply is. My favorite emotion is Joy, and even as I am writing this I feel joy, because by asking these questions you are freeing yourself. You may have to do so again and again but you are trying, and trying is the only way of doing there is. I think the reason I cannot cry is why I don’t scream, but there is a reason to stop. I am just not sure I would know how to do so. The reason to stop is because of life.

And on the last question you ask, respond to me as a person above all. For that is simply who I am. That is who you are too, so remember that. People are fallible, and you will have days when you cannot stop making tick marks, days when you lie about it to yourself and make less than you should, and days when you run out of paper. Then there will be days when you don’t think the toxic thoughts about your worth, and when you can see other people around you through your own eyes.

M helped me find the answers because we were talking about a Patsy Cline Song, and Jonah Hex. Jonah Hex is like us. He is the product of severe abuse and cruelty. He is trying to make the world better in his own way but he is actively stuck in his personal cycle, and has no help getting out because of the judgement of others that take a scar on his face as a sign of his internal wickedness. A scar made by abuse.

When I read Hex I listen to Country Music. The Patsy Cline Song A Church A courtroom and then Goodbye is for me a reference now to my wifetime. My marraige was short, but before it became bitter it was sweet. I really did and DO love my exhusband. I love the parts of him that were good, the parts he chose to throw away.

He tried to devalue me and instead showed me a part of the abuse I was still in. In my life the only nice things I let myself have were investments in the future, so that I could save money in the long term. So my computers are always expensive but they last a long time. (Five years is a looong time in technology and I can jury rig things for a lot longer with this one if I just don’t save anything to my main HDD.) In fact, I so rarely bought anything new for myself and then it was an item of need.

My nice new clothes he took away? I needed them because I had nothing to wear LITERALLY. I am actually about to go buy pants because I need them and again have almost none at all. My shiny new Batgirl statue is a symbol of my being deserving of want. I deserve to want things. Instead of that being a dreadful affliction, a sin, or something bad… it’s okay. I may not buy everything in the world but as with food deprivation, depriving myself of the things I desire causes me to binge.

I can throw away the sales ads from the stores now. I no longer have to try and fit new trash in with old. I am still working on unhoarding my home but it is clean, the only things on the floor are furniture, wheels from my wheelchair, and cat toys. There is no filth, no piles that I have to climb over, and even better? I don’t hate myself for wanting and for the things I have.

Furthermore I also have something for you and everyone that reads this my dear Rageomatic. Love.

Love is a constant. It is not a weapon. It is not harmful. The idea that love can hurt you is silly. Not everything that has been called love is actually love. If something is called love and it hurts, it is something else. Pain is not beneficial but is a warning of something harmful. It is a sensory antibody. I love. I love everything and everyone. I admit even to loving those that hurt me. Love itself does not mean you have to open the door, open yourself to more pain, but instead the love of yourself is why you can step away from the cycle, and why you are not alone.

When you can love yourself and admit it to yourself, you can give yourself permission for joy. Joy doesn’t fade either but sometimes other feelings occur but that makes the return of joy all the greater.

This is my gift to you, and to myself. Thank you for asking your questions.

Another One Bites the Dust (Trigger Warning)

I find it a bit odd to be writing this post. It isn’t odd that I would write about caregiver abuse, but that I would write about it again so soon on a personal level. I’ve been quiet about it because I didn’t want to spoil the surprise for my not so perfect now ex-caregiver K. Remember when I posted that the Honeymoon was over? I didn’t talk about the whole there, nor did I mention that K was going to be fired from that moment, as soon as I could find a replacement.

K was not as bad as the other abusive caregivers I have dealt with, but, she was worse in some ways. She was abusive to my neighbors, not just me. No one should be abused but I have always felt it should just be me, if anyone at all. Not heroically but I don’t want anyone else to hurt. I also was a bit unaware of some of the abuse, still in survival mode. It all hit me at once the other day, but a couple of days ago (That’d be a Monday) things exploded.

Before going into that I want to list all the ways K was abusive that I can think of, partly because I still feel this little niggling doubt, these caregivers can’t be all bad right? This is a symptom of abuse itself. It springs from that old addage, that if the problem keeps reoccuring it must be you. I realize that there may be truth there, but, with abuse it is not the fault of the victim, no matter who they are.

K’s Ways of Abuse:
Tardiness. The instant she was aware that I couldn’t just fire her, she became so unreliable I spent the next few months literally just waiting for her. This meant no appointments unless I wanted to risk punishment, this meant missing religious activities, personal activities, and put me back into that pocket of isolation that I had fought so hard to get out of. This meant also that I couldn’t schedule appointments with other caregivers to interview them.

Offering the Forbidden Foods. Forbidden foods do not just include allergens, which she filled my new kitchen with as she put her own food in my fridge and freezer. This includes offering me food that I specified triggered a PTSD response. Turkey and Quesadillas both to me are the worst food in the world. It’s a bit ironic on that last one but, it is no longer one of my favorite things. I told her clearly when I hired her that these foods were not welcome in my home. If I pissed her off, she would offer it to me, then mock me for being upset if I showed it.

Emotional Abuse. This is a bit of a borad umbrella, springing off of the specified torment above, she’d ask if that was Paul outside, she’d mention how hard it would be for me to escape in this apartment with there being a limited number of exits, she made sure to tell my mother I think she’s a bad mother, she did a dozen little things JUST to hurt me. This included losing things, hiding things, and accessibility challenges though that over laps into…

Physical Abuse. Being denied the ability to bathe, clean clothes, food, etc is physical abuse. So is spiking the heater up to 90 on a heat sensitive person, when they are asleep it is more dangerous. Putting piles of boxes infront of the refridgerator and then not showing up for a few days is also abuse. Making the home in accessible by arguing about where things go and then just putting it where you feel like is abuse. Throwing things, is abuse. Burning food to punish someone for not letting you make up hours you missed by being a lazy (censored) is abuse.

K I sure as hell hope you read this, because I never got to explain to you why what you did was wrong, and your mommy sure as hell never will. It’s also wrong for you to not buckle your child and enforce her seat belt time. If she dies you are liable for her death as Murder. It’s a cold hard fact, and one I hope you never face but, with the way your kid runs around a  moving vehicle and distracts the driver, her danger increases. Oh and that warrant for your arrest? Who will take care of her if you never resolve that….

Snarly side note aside the abuse list is a lot longer but it’s hard. I feel like I lost momentum in my writing. So, since I can’t list every abuse let me tell you why she wasn’t given a nice ejection. The last day with K.

It started out on a somewhat cloudy day, I took the weekend to myself, because the endless waiting has left me a very angry client and Friday she was so late that after asking me to get up early so she could come in and have the afternoon off, I said screw it and locked up then went to sleep. I told her I was doing so. I worked it out with the people who are helping me change agencies, the original plan to ditch the pain in the butt, and they agreed with my choice so I gave K the weekend off. She always complains about how hard the work is, how we never have fun etc, so it seemed like a good idea. Side note here, you can’t have fun if you are late and MISS the fun.

So, Monday comes, I slept a bit late, took my time getting ready, I didn’t know if she would show or not. I unlocked the door, go to the bathroom, and the banging starts. An Unlocked Door is impossible to open you see. So I finish my business and go to open the door. She is HOLDING the knob so I can’t help her. I have to work hard to not show my disgust at this and I go and sit down. First things first I give her a chore, the litterbox. Not to punish her but because after five days it is rank. Five Days. She didn’t do it when she was told to the last time.

Then, I decide to ask for food. This is where it all starts to go wrong, apparently my wanting her to do her job is a bad thing. I bought pizza recently, and decided to eat it. So I ask her to put pepperonis on the pizza and use the oven. She supposedly cleaned this oven but I always put my pizza on a sheet and insisted. Now I am glad I insisted on that because with in minutes the oven, which she supposedly cleaned, was on fire. She set my kitchen on fire.

Instead of turning off the oven, opening windows etc, she runs outside for five minutes. I am stuck in smoke. So I start trying to get the window open, because I cannot go outside without my chair. She comes in and yells at me to sit down, so I do. I am not going to waste energy arguing. She then proceeds to leave the door open, to which I ask her to close it and lock the cats up THEN open it. I don’t know why this is a bad thing, I want to protect my cats. They take care of me. She replies with, and I quote because it pissed me off, “You don’t care about my feelings!” Her feelings? I didn’t think before I spoke, “Not right now, no. Now close the cats up.” I am choking on smoke, she keeps going outside to escape it, and then says that crap? Really? She follows this up with a, “After all I’ve done for you.” I let go. I have kept my anger on a short leash, and this is the first time I have yelled. She;’s already screaming at me, and I am not going to have this dumb (censored) in my (censored) house. I cursed too. “Get the (censored the F word) out! You are FIRED!” Somehow, I managed to double yell Fired.

She kind of stood there for a minute, so I got up. I am half expecting her to hurt me, because with everything else? Why wouldn’t she? So she storms out after I grab my grabber, which is metal and solid. Yes, I armed myself just to feel safe. Also I was wobbling badly so I used it to balance and moved forward. She moved back and then threw my keys at me. Then Her keys. Then she stormed out the gate and I locked up. My neighbors and caseworker showed. Kat my caseworker, I haven’t told you about her yet but she’s fantastic even if we get the name giggles, was already there with another client and came immediately. My neighbors all checked in on me and have been regularly when Keera doesn’t show. Since she abused them too, I don’t blame them for staying away when she is here.

I have been alone for two days, and I have been great. I get quiet time, instead of incessant texts that show her illiteracy, not just text speak but gibberish to those who KNOW text speak, chain letters etc. Now, she did steal from me, and that last day took some of my morphine. She also happens to owe me money. Will I ever get paid back? I will sue her if I have to, because she signed an IOU for the money. I decided it was worth it. I even put in an addendum that states that if she doesn’t pay by a certain amount of time, then there is interest added on. She signed it and we each have a copy.

I win. I am good right now, and I also know that I really do win. How can I not when I am strong enough to make my way out. I can’t share everything with this space because I mean it when I say there is going to be legal action. I can handle it. She probably can’t. I (censored) Win.!

I am Angry

I became aware of my anger today. I wasn’t aware how angry I was until trying to explain my back injury. I often tell myself I am not angry and try to behave with altruism in mind. I am pissed. Right now I could cuss! I have felt tension in my neck lately but, there are so many reasons to be tense I couldn’t figure out the why.

I am angry that people take disability as a sign of dramatics. I am not overly dramatic when I do not want to go grocery shopping. I do not want to face people. I do not want to treat something else that is medically wrong with me the doctors way, and choose to abide myself. This doesn’t make me overly dramatic. I have reasons for each thing, and none of them are dramatic.

None of my disabilities are in my head. As a young disabled woman, I am often told to get up and walk. My wheelchair is used as an excuse to shame me. It fails, but, I am angry. I am tired of explaining why I am in a wheelchair. Why is it not acceptable to ask someone, “Why aren’t you in a wheelchair?” Why is it that being seen as abnormal means people perceive weakness?

I am not weak. There is no weakness left with in me today. I might be weak tomorrow but right now I am feeling the roots of the earth. I am feeling ancient and mighty. There is a cost at this anger, but being aware of it means I can try and let it go.

I am specifically angry at the word Vanity today. Why is it vain to want to prepare for the risk of my hair not coming back with scar tissue? Any other person I know of seeking out ideas, pricing wigs, and other ways to hide scars would be assisted. When I ask the question the shop keepers look at me, look at the chair and ask why I bother. This is not right.

I want every bit of perceivable normalcy that I can obtain. I do not want people to see a big scar on my head, then my face. I want them to see my face. It is hard enough knowing that they first see my wheelchair, then my service animal, then my breasts, then my face. It takes so much more for a person with a disability to be seen as a person at all.

Why does it take extra brilliance to be an equal? Why does it take harder work to make ends meet? I am angry about this. My rage burns slow and deep. I am trying to change things but my fear is that I will fail. I am starting a professional public speaking business, and I am hearing the voice in my head whispering, “You will fail.”

I might. I don’t think I will. I know I will face discrimination, I will have to enforce the ADA wherever I go. I fear though, that I will be paid less because of the chair. I fear that people will not want to hear me speak because what good can a chubby chick in a wheelchair do for them? I have to push these aside and feel my anger, so that I can push on.

I am angry too as I realize that bullying doesn’t end with childhood. I am disappointed as that delusion fades upon the minor scruitiny. I will write about that soon. Adult bullies are just as bad as the children they raise. They are the ones who teach children cruelty. I run into them often.

I am proud to say that my lack of weakness shows more often than anything else. I am a very strong and talented woman but, what about those who have not had the chance to flourish? Yes, I fought tooth and nail for every bit of normal I can project, for every success. Not everyone is strong enough and most children with disabilities need more care than I recieved. How much stronger would I be if I had been cared for? I think I would be a million times stronger.

I am a butterfly with broken wings that has flown again. I just want to fly without it hurting. I want a moment of peace. I want to have one day where I do not have to prepare myself for the onslaught of the world’s prejudice. One day of peace. There is no such day. It might happen for some but as a person who cannot hide their disability, as a person who has a disability at all, as a woman, as a bisexual person, as an autistic, as a person of any minority knows… that day of peace is one that you fight for and taking it can cost you everything.

I am so angry, but I will not let my anger interrupt my path. I will not let it mask my fear. I will instead use it as passion to continue fighting discrimination. I will continue fighting for my freedom. I will continue fighting for your freedom. Everyday more people become disabled. Everyday more people find their rights are a myth. Everyday people die as a result of discrimination. Everyday in the United States, where I live, people die of starvation, people become homeless.

I am so angry. The anger comes from an emotional pain that leaves my heart throbbing and me in tears. This pain is for those who suffer. Part of it is physical pain too. My back aches, my muscles spasm, my ears ring so loudly I can barely hear anything over the din, my fingers hurt and dislocate, and I grow angrier because I don’t know why I feel like this. I shouldn’t lose a day to snow. I shouldn’t fear going outside, because each time I do my saftey is threatened by ignorant fools.

The cost of living with a disability is so high. I am tired of paying it. I am tired of feeling the terror of actually working. It makes me angry to feel fear like this. What if I do not earn enough to pay for my medication? What if I lose my SSI and become homeless? Will my Person and Caregiver both lose their incomes if I work? It effects them too.

I am tired of being angry. I am tired of worrying about appearance, yearning for enough money, proper clothing, and the ability to do what I want when I want not when someone else’s whim allows. I am far from alone in this anger too. Most people feel a form of it.

I thirst for the waters of freedom. I gasp for the air of life. I reach for it, but it is just out of reach. I feel the wind beneath my grasp and know it brings another storm I must weather. This is living. This is a life I did not dream of or foresee. I was unprepared yesterday. I was unprepared today. Tomorrow I will be prepared.

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.

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.

How Rare is Rare?

When every medical diagnosis I have is considered rare, I want to know how rare is rare? Ehlers-Danlos Syndrome, Raynaud’s Syndrome, Celiac Sprue… the entire list is much longer than that and as of yesterday has a new contender. I found myself laughing when my doctor said, “Well, It is rare… but there is a name for the skin condition you have.”

I wasn’t even aware I had a skin condition. I always thought I was just dirtier than the other girls, and that my skin just sucked. I used to shower up to six times a day, though that made little to no difference in the quality of skin. I have lesions, blisters, boils and abscesses constantly. I thought this was normal, and that everyone got them at least sometimes. The name of this condition? Hidradenitis Supprativa. This condition is considered an actual disability according to the government.

I know why personally. For one, there are days when I can barely move my arms and walking, beyond the agony of the broken bones and hip issues I already have can be made worse by the damaged skin in my groin. Psychologically some of my most depressive days are the result of being infected, sweaty, and often worrying over spreading infection to others. Now that I know the name of the disease and have some knowledge I am aware that I am not going to infect anyone with it. It is rare. It is genetic.

I want to know what the mortality rate is with this disease. Some might say zero but I remember just wanting to die when I had my first really bad abscess. I was at work, and my nice shirt was ruined by the pus and blood because the boil burst before my break. I hid more shame, and beyond wanting to hide, run, or just cut my breasts off I considered killing myself. The never ending work of trying to get everything done, trying to be clean enough? That day I could not fathom selling anything, hefting the heavy boxes of dishes, and what about the smell?

Infection is not a clean smell. Neither is sweat. Being a teenager I never felt pretty. It took me becoming an adult to start seeing past the little things. Still, attending a friend’s wedding my thoughts were how to make certain my formal wear would not retain the odor of my sweat, on how to make sure that no one could tell. I am now entering the mourning stage of a new diagnosis. I mourn the times when I cut out my own abscesses. I did that last week. I have never once considered seeing a doctor when my breasts split open. It happens so often, that it is normal to me to self care.

This brings me to another point where I was accused of Self Mutilation as a teenager. Beyond having actual issues with that due to the severity of my depression, there were times when I was told I had to have cut myself in order for my body to be so gory. I was sent to a therapist for it. My body has scars, open wounds that have been around longer than some of my siblings, and my mind has been shaped by this disease.

The other effect of more rare diseases that are incurable is this. Can I escape being disabled? How inevitable is it for some of us to wind up with our bodies breaking us down? My body is out to get me. How can I function like this? What is next? Is breathing going to become a forbidden act because of something rare and genetic?

How can something like this really be rare too? Some of the research I did today indicates it is related to acne, though it is not acne. What if it is not as rare as all that? What if more people have it, undiagnosed and are losing out on their quality of life?

At this time there is no treatment. I will be updating my disabilities page, and I will find ways to help others like me. The more people who know, the more the odds of a treatment being created increase. I currently treat the breast area with a steroid cream, though, this is dangerous to do for your genitalia, and therefore half of my effected area is untreatable.

There is nothing that relieves the pressure, beyond bursting the abscesses. There is nothing that relieves the burning sensation, and there is nothing I can use to cut down on the sweat. Sometimes saline solution helps to dry me out, but, there is nothing that has a permanent or even reliable effect. Antibiotics have helped some, during the worst part of the cycle, yet not for me.

I am tired of being rare. I am tired of waking up in the middle of the night and squeezing puss out of my breasts. I am tired of denying myself sex, when I truly want it, because I fear being disgusting or the pain is too great. Sex is important to most people, me included, but my body is attacking itself and eventually my genetalia may be scarred so deeply that I can no longer function sexually.

In a long term relationship, this has an effect. It is not positive. As a woman, I have had a lot of challenges facing my femininity, partly because of this disease, but this adds another facet. If I cannot pleasure my partner, and vice versa, what are the long term side effects psychologically?

I am rare. I am one of the rarest people you will ever meet. My pain is rare. My skin is rare. My eyes and hair, and my entire body is a rare example of surviving despite it all. So is yours. So is the man on the street corner in the business suit. So is the single mother. Rare is not rare at all. For every diagnosis of a rare condition, countless others are never discovered. Statistics are faulty, when not every case is discovered, so how can we truly understand rare?

Info Links on Hidradenitis Supprativa:

http://www.hs-foundation.org

http://www.hs-usa.org

The Antidote for Discrimination Is…

I have felt the urge to blog repeatedly, but until now I have not given in. Blogging can be as personal as writing. I have spent the last week in preparation mode skimming the internet reading other blogs, seeing what I liked, what I didn’t like, and the power behind the words. Some of these bloggers brought me to tears, and that is no small feat. Others made me laugh, some caused me to feel sorrow, and a few gave me the chance to feel angry.

I wasn’t sure how to start my first post, but, since I am an advocate for all disabled, all women, all men, all people in need I will start there. The topic nearest and dearest to my heart is Service Animal Law. Some of you who read this might think you know about service animals, and you might be right. Others will presume that a service animal is only for a blind person. You are not correct. A service animal, by the federal definition, is any animal trained to assist a disabled person with a task. This does mean that if you have a seizure alert dog, it has to do more than that. The law even gives behavioral guidelines.

I have a service cat. She is trained to do things including retrieval, seeking assistance from specific humans in the case of an emergency, medication reminders, object retrieval, and she has also been trained to help me balance. A lot of these tactics came out of her instinctual responses, but those needed to be honed. She also had to be trained to handle a crowded mall. Now she handles it better than I do. People often ask me why a cat, and my response is simple. I am not allergic to cats, most of the time but I am allergic to dogs. I also trust cats, and I haven’t trusted many dogs in my life. I have to trust my service animal partner.

I have faced some serious discrimination because of being disabled. When I was still walking most of the time, it was harder because I was in extra agony since forcing myself to walk through a store took all of my energy. The more tired I am, the more pain I feel. There have been times when I have had shopping carts jerked out of my hands, causing me to either fall or nearly fall. I have been denied the right to buy groceries, and recently I have been illegally denied medical care.

I am perusing legal action but I am well aware that other people might not know how. Today, one of the blogs I read, reminded me that not every person is trained in how to handle discrimination. When you are disabled, you might feel more vulnerable to attack, and when people threaten to take away your service animal or refuse access, it can be terrifying. I feel often as if I am going to be hit if I push forward. I was an abuse victim for most of my life, but, adulthood came and I found a way to break free. Not everyone is that lucky.

So, here it is, my guide for other disabled people with any LEGAL service animal on how to advocate their rights. A side not before I begin, if you do not need a service animal, do not lie. We will catch you eventually, and the crime has a punishment. Depriving people of their rights through your shallow behavior is the worst thing you could possibly do, and, whether you believe in Karma, Hell, or just recriminations in this life from other people, you will pay for it. The law will get you, Advocates will get you, and if Karma gets you, it will be worse than anything I could dream up.

The Guide– Dedicated to Renne, Helen, Aimi and Snow, but especially Bree. (All Links will open in a new window/tab.)

Step 1. Stay Calm. This is for me the hardest part of advocating for your rights. Sometimes I want to run, other times I want to scream and cuss. Neither tactic is helpful. As hard as it is, you have to be the bigger person, and stay nice. You can have anger in your voice, do not deny the emotion but do not let the emotions over ride your goal.

Step 2. Calmly as you can, state that they are breaking the Federal Law. This is what I have practiced saying in the Mirror daily for the last two years. “You are violating the Federal Law. The Americans With Disabilities act provides protection for my use of my service animal.” When I say this I hand them a copy of the law. You can get a copy of the service animal laws from the ADA.  I  have the business brief printed with my state law on the reverse side. You can obtain access to your local service animal laws at http://www.animallaw.info/ I carry  my print out in aUSB case on my scooter keys. You can also buy laminated cards from various businesses with the law on it that explain your rights. For some people this is easier. Those cards are usually kept on your animal’s harness.

Step 3. Explain the law in simple terms and how they are violating it. This does mean you need to know the law. Not only does knowing the law protect you from discrimination, but, it lets you educate people. The biggest cause of discrimination in my experience is a lack of knowledge. If someone isn’t willing to learn, or admits they know, then you have a larger problem. One of the main causes of confusion with service animal awareness is that few businesses train their employees. It is illegal to require a service animal to wear a vest or show an ID tag. When someone asks me for this for my cat, I show them the law and educate them. Often, they will try and state she cannot enter because she is not a dog. My local laws state only dogs can be service animals. The laws are written so that the stronger law prevails. This means that if the Federal law says I can have any animal, that is trainable and meets the standards and the local law does not, we refer to the federal law. However if you live in a state like California that requires ID tags for all service animals, then, the law requires you have an ID tag. This is another source of confusion, but, it is an attempt at increasing the rights of many.

Usually by this point I am either in the building or they are just going to break the law anyway. If you have reached this point, it is time for Step 4.

Step 4. Take a very deep breath, and remember Step 1. Then ask to speak to their supervisor. If they refuse or are the supervisor you can try explaining the laws again, or calling another advocate to try and help. I keep the number handy to the local advocacy organization, and they have helped me countless times. Even knowing I can call day or night, is helpful because I do not feel alone. At this time I have no national links, but if you are in New Mexico, contact Service Animals and the Law. (Link forthcoming). If you have links nationally to websites that can help, post them in a comment. I want this page to be a resource for any person in need.

At this point you should be through the trying time, most managerial staff listen well and correct their employees. Recently I had to fight my way into an apartment complex using this tactic for three months. Even when I had food poisoning I had to try and follow my rules, but, eventually I prevailed. Advocating for yourself is the hardest part of having a service animal.

Not every person responds to this and if you still cannot get through to them, you need to contact the ADA. You can email them a detailed complaint, include names, addresses, contact information for both parties, and send it to ada.complaint@usdoj.gov . If you would rather call you can contact the ADA via their hotline using these numbers: 800-514-0301 (TTY-800-0363).

Remember, you are strong, you are beautiful inside and out, and you are not alone.

Other posts in this series: What is a Service Animal?

Additional Resources will be added as I find them:

Information:
http://www.assistancedogsinternational.org/
http://www.deltasociety.org
http://www.ada.gov/svcanimb.htm
http://www.ada.gov/qasrvc.htm
http://www.equipforequality.org/resourcecenter/ada_serviceanimals.pdf

http://www.animallaw.info/
Service Dog Vests and Supplies:
http://www.pettop.com/
http://www.raspberryfield.com/
http://www.activedogs.com/servicetherapyvestharness.html?gclid=CI-6iKm7rpgCFQEpGgod3QL9Ug
http://www.ldsleather.com/patches.html
http://www.petjoyonline.com/ADA_Federal_Law_Information_Card_for_Service_Dog_p/svd-0054.htm The Law Info Cards
Scholarships
http://www.assistancedogunitedcampaign.org/scholarship.html
http://www.keystonehumanservices.org/ssd/ssd.php
Blogs:
http://www.servicedogblog.com/

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