Voices Rising from Silence (PTSD Trigger Warning)

As an advocate for myself and when I can other people I run into a question a lot. “How do you do this?” This question most often comes from my fellow autistics. As someone diagnosed as an adult I find a lot of my experiences without diagnosis mirror the “medical treatments” others on spectrum who were diagnosed have. Child abuse in disguise as therapy in order to teach control reigns the autistic childhood, we learn silence. We learn stillness. We are erased with in our own bodies as much as possible. We are punished for existing. The best autistic parents even do parts of this because there is no voice that they hear, yet, from the autistic community. Our song has just begun.

The autistic culture is one of enforced shame, it is one where we deal with a lot of hate just for being. This is in part due to a lot of hate organisations like Autism Speaks, who sink their budget not into helping people but into quackery, negative ad campaigns and convincing newly minted parents of autistic children that their children are a burden. That their children will never live on their own, get married, have a “real job”, or anything that is valued as productivity. These parents are convinced that there is only pain in the life of the autist. So they create more of that pain, feeding it. I do not deny that a lot of things with autism really suck but I LOVE who I am.

How does one learn to speak? I think this how to might apply to survivors from many types of abuse. It is about regaining the voice. This process is not universal and is a general guideline to what I answer the most often when people ask me how I blog, how I advocate, and how I risk going out of my house being so far from the norm. I think I hide less and less of my abnormality. I celebrate it now, but it is an on going process and journey.  I wish there was a universal answer but here is what I worked out as far as what I do subconsciously and consciously that I can put to words.

1. When I want to be silent out of fear, I speak up and risk the consequences. This to me is the basis of self advocacy. Oppression is born in a culture of fear, so I must not obey the fear that tells me to be quiet. “If you are good and quiet nothing bad will ever happen.” If that was true I would be a far different person, because being “good and quiet” only lead to pain. It leads to secrets. Good and quiet would mean still being with my exhusband, it would mean watching my father murder my step brother with a frying pan, and it would mean condoning every act of rape, malpractice and other harms brought to me by people who tried to take advantage of my selective mutism, of my physical fragility and of my silence. Sometimes it is a small noise, other times it is a roar. Sometimes it is actually words. Sometimes a song. I am not silent. Not anymore.

2. When I am threatened, I do not revert to silence. Making noise leads to punishment. It leads to the threats that come in a variety of forms. I had a medical professional threaten and then withhold my pain medications on more than one occassion, because she did not believe I was not addicted. I suffered. I was then told if I kept speaking up to her boss about these threats and punishments she would have me black listed. I took that threat to her boss and switched doctors. I have a doctor now in the same facility. I wanted to be silent. She is no longer my doctor but treats others, thus I also am in the process of number 3.

3. Do not let the threat harm others. This is a mixed bag. The threatening person may be someone you cannot stop. This protection must never come at a cost you cannot live with. This means do not chase the axe wielding halloween monster, go for more qualified help. It means talking to someone’s boss, documenting issues. This is often what gets me to perform step 1. If the doctor was allowed to bully me with medications I needed and threaten my life that way, she would be allowed to do that to other people who may not be able to endure it, be able to adapt and if someone else spoke up without documentation I had, then I was harming that person. Thus i went to her boss in step two. As you can see these steps are not in order because they are more a mobius strip how to guide for living.

4. Document the threat. Little notes from my exhusband, recording the doctor without her knowledge as it is legal to do in my state, pictures of bruises. Those parents who send their autistic kids to school with hidden cameras and find out that not so shocking to any of us, abusers aer out there ready to harm your vulnerable chiild for being who they are.

The same process applies to why I write. I cannot put on a super hero cape, race about the world and fix it. I must slowly advocate for myself and then when I can on bigger projects.  I cannot advocate for others if I do not come first. i think back to my first few tries at blogging. I threw on a secret identity, I tried to hide who I was. Yes, there were other blogs before Textual Fury caught fire. I stumbled, I struggled with my words out of fear. Then I realized that was what i was trained to do and the rebel that lives in the core of my being took over and I wrote the first post here. As I wrote more and more the tone of my blog changed and I let out the “monster” i feared. It turned out that person is pretty darned cool and I began to push further and further out in the world as myself. I never hide anymore.

So how does someone conditioned their entire life to a culture of silence learn to speak? By doing. The posts I never share, those still happen, the poetry saved on my hard drive instead of published, facebook and talking to friends, gathering with other autistic people. Knowing what I know now those are just little things. It has to be something you want, so you have to stop hiding from the desire to write, to sing, to speak, to shout to be. The thing is? Just wanting to IS enough. When people ask me for help it makes me proud, not of me but of them. I am proud of every single person who takes on the difficult journey of learning to speak for themselves. This is not a challenge exclusive to autistic folks, though the culture of silence caused by shaming and abuse seems to be so prevalent among my people that there are no autists I know without PTSD or that they know. There are no autists without pain, suffering and a knowledge of abuse that is intimate and too close, that I know of… except perhaps those children being born right now. So we are learning to speak so that they do not face the battle of a life where our words are forced back down our throats until we choke on them. That is why I wrote this out. The how to on blogging is the same as other things. Baby steps, do what you can and try to do a little more each time. Cry, laugh, feel happy, feel good, struggle with it. Live.

I think of the others who came before me, for I was hardly the first blogger with autism out there. My brain does not want to write names but I can see faces, words piled up before me that create a beautiful sky and world. I remember the first moment I read something by autism speaks and it broke my heart and filled me with fear. Was I seen as such a monster? Did i deserve the abuse? I was a baby back then, not yet a woman and lost in a world of flying diagnosis where everything seemed to stick. Then I decided to find adults on spectrum too. Now I have loving friends who hold me close, even if it is just as text. Better as text since I can enjoy that. The diagnosis that stuck saved me so I could find out that no, those descriptions of horror are wrong. Even if I had never been able to live on my own, they are wrong. There  should be no shame in having a need. There should be no shame. So i am writing this for the people who inspired this post by speaking,by learning to speak, by asking, and by being.

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Will I… (Trigger Warning)

 

I have been trying to hold back my level of suffering from the world. The various support groups for autism, Ehlers Danlos Syndrome, PTSD… every single one this is a reoccuring theme. I know why. Not only is being in this level of pain dangerous but it makes you vulnerable and often this is when people abandon you, attack you, or they cannot comprehend what you are trying to tell them. I do not as a rule cry when I feel so much pain but I silently sit and try to find the cause to fix it or I just learn that this is my new life. I must always be prepared for the permanence of my agony. There are people who are lucky enough that this is not the case.  I cannot stop hiding this, even when I try sometimes. There is the element of fear. If everyone knows that I can barely breathe for pain, then even the predators know. (Oh hello predators. Yes I will tazer you even when I hurt.)

This song is from rent, it is called Will I… thus the title of the post. I could die from the on going issues I have at any time. My heart could fall to pieces, a literal broken heart. I could have a heart attack from my stress and high cholesterol. I am bleeding internally somewhere, I could run out of blood. I could kill myself. That is why I am writing this post. You see, that is the whisper in the depths of what might be my soul. If I die it is over. I do not live out of some doubt about an afterlife. I do wonder but that is not a consideration in any of my choices. I do not stay alive for other people or the cats. I love many people deeply, so deeply there is an ache of joy. I guess a mental pressure sore from all the goodness. I stay alive because I want to.

I am afraid of dying and missing people. I am afraid of lingering in pain without dignity. I am terrified of being tormented by doctors as Ihave been lately. The nightmare is not the diseases or the pain. In fact some of that is better. I officially no longer am diagnosed with epilepsy but still have a seizure disorder of some sort. The some sort is not defined by science. Yet NOT having epilepsy is a miraculous thing.  It is a wonder to me.

I spend a lot of time advocating, and passionately burning for the world. Now I am just burning. The pain is in every nerve, even though some of them should not be communicating with the brain. My blood pressure is up, my heart is racing, and this is omnipresent. I have had to fight around government shut downs for my needs, but I did this. Yet all I want is to have someone hold me. Something no one can do at all. Maybe ever again. I just want to be held in a soft space of beautiful harmonics without actual sensory input. This dark space has no reality. I often find this song in the undercurrent of my psyche because it holds most of those things. Yet I do not have to wonder. No, my life will never get better. I will always have some agonizing wrong. Yes people care. I have never known how much people care, I think I do then it seems to grow. Maybe I grow. Maybe not.

I am terrified. I feel the race of time, not just because bleeding internally is very bad but I need this resolved for my mental health before november. My PTSD is at a peak height and I am not sure what I will be enduring medically but I know I will survive it if I can. Will I be allowed dignity is the true question. I am afraid to die and leave people I love, this is new to me. I never cared before. I always lived for things like spite, revenge. My revenge has been to build my life up into something I was told I could never have. I look around this space I live in and every corner has a marker of love. Every doll I own someone else gifted me, the Gothmas tree that needs its decorations and makes Sylvani happy, the pile of scarves I know will be useful and necessary that are clean, the myriad of tiny touches. My life has been a life of grief and loss. Now that I have things I want to hold on to I am afraid I cannot survive this. It is not a lack of will to live, it is a lack of trust in my doctors. I have no faith in even the best of them. Why should I with the ineptitude I have fought against for so long?

So I am left to wonder. Yes, I am in pain. No I do not know if I can survive this. I will try.

One more thing: The man who wrote Rent? He died from a condition similar to EDS called Marfan. That runs in my family too but I lack the features that mark it. That is LUCKY for me. I sometimes wonder if the pain he felt and held too close contributed to his dying, if that is why Rent hits the notes I sometimes NEED. Just a little tidbit for people who may not have known.  I do not reach for the anthems of survival that are broad and direct, they ring hollow. “I will survive” does not match my spirit. Even when that is indeed the attitude that I display as I emulate the bronco and buck for my life.

 

I am jagged glass

shattered now

pick me up

fear the cuts

I do not intend

Yet I broke

can you lift me up?

Will you laeve

I am broken

Never repaired

yet I was beautiful

I am beautiful

Shattered glass

so many sharp edges

yet it is true

I am beautiful

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