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

The Right to Remain Silent (Trigger Warning)

I have so much going on that I have been silent, because writing hurts. Typing sends sheets of agony down my spine.  My belly is swollen and lopsided and no one knows why. I might have a brain tumor or a billion other things making my testosterone levels skyrocket. (Meaning if you think testosterone makes you a man I am more man than you, if you are indeed a dude.) I have been fighting for access to the same care a non disabled woman would have gynecologically, while being torn for a pap by the speculum because the doctor decided that I did not have the right to a less painful exam. THAT has never happened to me before medical fragility or not.I have been struggling. I have also seen every day in the news a murder, maiming, medically questionable treatment usually reserved for animals., continued institution and many other horrible things being done to autistics.  This is true of other disabilities but not to the degree that autistic children and adults have been deprived of the empathy that their victimization should have.  Here is where I should link you to a few brilliant pieces I read but I cannot handle the triggers to read the truths again.

Two nights ago before bed, due to a technical glitch I had a talk with another autistic advocate and we both acknowledged that as children we were taught to be compliant, pliable and to NEVER say no. We were taught that certain abuses, things taught to even children with good parents who are taking the advice that is being given in the form of ABA and other wretched training methods that use violence and pain as therapy, have been used to silence us. Every autistic advocate I know has PTSD from treatment, abuse, and some of that abuse was preventable if they had known that NO was an option. I am not always the most vocal advocate, especially when things are as bad as they are medically, I focus more on staying alive since that is very helpful with the whole fighting for your rights thing. So I am always relieved when I know that other advocates ARE out there. They are persistent, present and even if one of us takes a small step back for our own needs others are there to help with the event horizon of advocacy. Autistics are not seen by most people as people. We are not seen to have pain, rights, or needs. We are seen as a burden, an imposition and a chore.

This shouting anthem should be read with as much loud punk music as your brain can conjure.  It is as close to stating how I feel about all of this as I can manage. My words skim the surface like a waterbug. I want to scream. I want people to HEAR it. To feel it. Take the punch in the gut, take the flag, rise up and listen. No one knows more about autism than we, the autistics. Not the parents of autistics, even the ones who DO listen to us. No one can speak for me. No one. Now if people just listened when I do speak we’d be golden.

The Right To Remain Silent

You have the right to remain silent
That is what they say to the criminals anyway
but being born with an autistic brain
doesn’t make you a bad person
Not unless you maybe rob a bank.
So I am writing this out in the hopes
That you will hear the song behind the words
Flap your hands, look away from their eyes
Defy their toxic works.

You have the right to shout
You have the right to rock
you have the right to sing
you have the right to be
You have the right to no
You have the right to live
You have the right to no
You have the right to remain…

Don’t take their word for what you are
You have value even if they can’t see
Our words are taken through violence every day
but being born autistic doesn’t mean it has to be that way
Trained from birth to take abuse
We are people
Gonna rise and shout
Scream it
Say it
flap it
rock it
paint it
feel it
breath it
SHOUT IT OUT

All the people we see and hear
don’t seem to think we should speak and say
I am not a doll
I am not a toy
I am not a dog
I am a human
I am a human

Raised to say anything but what I really feel
Taught that my words cannot be valued
Do they rape me?
Do they break me?
Do they beat me?
It’s just therapy
Do they drug me?
Make it hard to think?
Make me want to scream?
Do they cause me pain?
It’s just therapy
Silent hands
quiet hands
eye contact
scrubbed skin
Get used to it
Cause it’s just therapy
Don’t say no
Don’t say pain
Don’t say truth
It scares them
Less than them
That’s a lie
Its the lie
Fed to us

So shout it out
tell the truth
Since when does the abuser get to say
What is right
For their victims
We’re the survivors and we’re going to stand to say

I am not a doll
I am not a toy
I am not a dog
I am human
Where’s my equal rights?
Fuck the ADA
I’ll take the social equality the hard way.
I may not stand
I may not speak
I may just breath
I may sing out
I may write out
I may say it too
I have the right to expression
I have the right to truth
I have the right to bodily autonomy
I have the right to … everything you do.

The first chorus has risen, the second chorus too
Remember that you don’t have to be silent
They threaten to cage us
They threaten to maim us
Sometimes that is where our lives begin

I am not a doll
I am not a toy
I am not a subhuman
I am not a monster
I am not a freak
I am probably a geek
I decide my identity

Say No
Scream NO
Live NO
Fight
Fight
FIght
Advocacy
Freedom
Equal rights

You have the right to not remain silent
You have the right to bodily autonomy
You have the right to medical care without fear of being

silenced.
You have the rights everyone else does
We are people
We have thoughts
We have feelings
Fuck you’re empathy excuses for infringing on our CIVIL

RIGHTS

Don’t tell me to be silent
That isn’t very civil
Don’t tell me to keep my hands still
That is an act of aggression
Don’t tell me my anger is invalid because it isn’t yours.
Who fails to see
The human in me?
You are the nightmare monster underneath the bed
The shadows in the closets in every autistic child’s fears
You are the screams without answer when we have no words
You are abuser. You are wrong.

So listen, hear this. Read it. See it. Tactile paintings were

just not enough. I am going to keep shouting because it is ME

who I love. Selfish? fuck yes! Survival! I did it.

Say No
Scream No
Shout No
Live No
Fight
Fight
Fight
Advocacy
Freedom
Equal Rights
This is LIFE

 

I AM More Important Than Your History

Random thoughts as I woke up this morning, and began my daily motions crept into my head. I have been thinking about the acecssibility of my city, or the lack there of. The excuse I am given in new buildings is that the sticker on the door should be enough. Some places obviously tried and usually it shows in grand ways. Other places give the excuse that to put a ramp in, or wide enough doors would be destroying the historical importance of the building that their business sits in. I am more important than the history of the world. All people are.

I know that this makes me appear to hate history, yet this is the opposite of truth. My first passion in life was history and I have always loved taking part in reenactments. I am for preservation but not when the preservation includes the history of excluding others based on arbitrary things such as skin color or ability. I suspect that the place I live is far from the only one guilty of such crimes, yet I look at the excuses and they no longer work.

The first time I approached a historical building and there was no ramp, the excuse worked, because then I did not know my rights under the Americans with Disabilities act. The second time I was told this, the excuse did not work but I had no power. Since then I have regularly avoided the section of town that is considered somehow worthy of preservation. Even going along the side walks outside is difficult as the inclines on the “accessible” places are so steep my power chair cannot make it, and coming down the other side of these inclines would likely be an act of suicide. Old Town is lovely, and often has events that are free and meant to gather the entire community. These events only count if you are willing to burn out your chair engine, sink into grass, or sit on the only part of the side walk that you can get to that is safe. The excuse is history.

None of these buildings retains their original purpose. They are all shops selling the same tourist crap. There are a few restaurants but they too are selling the tourist crap. People claim native ancestry and sit out on the side walks, because this is apparently historical too and barricade the way. I have had people get angry at me for asking them to move so I can go past. Then there is the staring. For some reason people react more strongly to my presence in this section of town. The idea that a disabled person may be near these expensive shops, may want to see some old time gun battling, or in general may want to be on the side walk that has curb cuts at BOTH ends (an extreme rarity in this town no matter the section) boggles their minds.

I have found my response finally, for why they need to have access for me and others who are disabled. I am more important than your history. It is not my history if I am prevented from learning about it. It is not a history I can embrace when a store that is selling the same tourist thing as the one next door can have stairs and no entry and their excuse is history. I realized this morning that the lie does not work for a very simple reason.

All of these buildings have restrooms. Every single one has a place to go when your bladder is full, when the tourist trap food gives you a stomach ache, or when you need to check your make up. Every single one. All of these buildings were built without restrooms. Every single one. They were built with out houses in the back, all of which are torn down. If access is less important than poop, you are obviously not thinking straight. If you prize history over poeple, you lose vital lessons about people that history contains. Yes, the stories here are amusing, amazing, and important. So are the people who want to hear them and might not be able to.

So there it is, my reply has been cemented finally. Whenever someone plays the history card in this never ending game of poker for bigots, I have my answer. If you can put in an outhouse, you can put in a ramp. I am more important than your history.

Apocalypse Now (Trigger Warning)

I am a survivor, as should be well documented by my propensity to not die when people tell me to. I spent a good portion of every day, without consciously realizing it, assessing my surroundings for survival. This is not as bad as it used to be, but even so the moment I had extra money I bought things to survive on. All things I buy must have a purpose. I consider reading purposeful as I have all sorts of books in my ereader, and most are about survival. Pleasure is also important to survival. My solar charger fits all my electronic devices that aren’t wheelchairs. In fact I have a design for a wheelchair based on surviving without electricity.

I didn’t realize how much surviving ran me until today. I have had mini epiphanies before about small aspects of this survival mode I have never lived without, and I am further away from that bare bones mentality than I used to be. In fact I like to think on how I could survive things to be prepared. This has caused a few issues including hoarding tendencies. I can use this to survive. I wonder for a moment how many people who hoard are survivors stuck in a world that hasn’t hit the apocalypse yet. Like me.

I sat down to watch a reality TV show, The Colony. I made it through two episodes, but I was NOT okay. At first I thought it was the machismo that was displayed by the men while the women were relegated to cooking and laundry. Then I started to talk to M, my friend. M who has helped me to survive, and has seen me grow over many years. He is in so many ways the balance to me. That scares me too but I started to talk with him about where these survivors went wrong. They first and foremost ignored food and water for too long, I kept laughing as their shelter had things magically appearing and no one tried to eat the camera men. I would. I would refer to them as bacon and by the end of the first episode would have them wary about getting too close to me if I were to partake. Then again, reality tv shows are too scripted.

It was the lack of their realism that hit me. I looked at the actions of these men and women and not one was gearing towards actual survival. They know that this experiment will be over, and they are just playing along. They waited almost a week to go food hunting, water they did sooner but really, they waited too long. Their shelter is not secure. If there were real threats, they would be dead. In the world in which I would survive these people who spend their hours trying to restore privileges like electricity are lost.

I realized as I watched them eat more food in their survival mode than I do a day that I have a problem. I call my meals my rations. I get accessories for cellphones and MP3 players that could work without electricity. Music is my coping skill, and I value feeling happy. You survive better with joy. Some of this triggering brought images of hunger from my childhood. I felt a panic about all the food I cannot eat, the water I cannot drink. I cried.

I am crying again just thinking on the feelings. I live as if the world is ended now. I stock pile food. If my food is below a certain level in my fridge I stop eating. I have a problem. I am aware of this and have been to a degree but I had not seen the whole picture. Each item separated from itself was less of a worry than putting them together in one go. I will kill you and eat you to survive. I also spend too much time worrying about how to survive things. I know the best places to hole up in my community, I know that I would not want a lot of people with me but at most four, I know… what to do. Unequivocally, a lot of this is based on my life.

I am setting a goal. M and I discussed it and I am going to try to eat two meals EVERY day not just when I feel safe. So… seven days a week. I am up to snacking daily and eating a moderate meal. I am not going to let myself call my food rations anymore. I do this just mentally but it is what we think to ourselves that betrays our reality the most. I feel a bit sick even thinking about changing my food. Yet, what if I get stronger by leaving survival mode? I know too eating well BEFORE the End of Days would be the best way to survive. Going in stretched already mentally and physically thin is an issue.

I also understand why I have been in tears over Monster High Dolls. I have cried at night when I could not conceive of wanting them. They aren’t needed for survival. That’s my worry. I am looking at the toys and art I have, most of it predates my recent starvation triggers with the room and the year of stuff. The few bought after either have one still in a box just like it on my wall or are just in their box. The only action figures opened either predate my disability, are in a very small phase that lasted a week of mental security post disability, or are in their boxes in case I need to sell them later. Even Batman.

I haven’t bought any new books over the years, I have more rechargeable batteries on hand at all times fully charged than most people ever need. Though I could use them all, I ration them too. Just in case. I have four flashlights, two that will travel with me, and I have been saving up for a solar charger. I also have first aid kits everywhere. I am so ready for an emergency that sometimes I sit here when nothing needs to be done and visualize my plan of escape in my house in case of X disaster forcing me out. Where would I go? Would I have time to grab my wheelchair charger? If not how will I get around after the battery dies? I am still going to work on that solar powered chair design but, that is so I can become a wealthy woman in a mansion.

In fact there is more. In my mind when I imagine having money I don’t buy a house, a car, a boat and all the trappings of wealth. I buy a computer that is reliable, I buy a house that is in a secure location or if it’s a better day it is built to my specifications, and I marry M. We then can live forever on my money but both still work. I understand my anger at the man who lamented no coffee, the man who spent a day finding coffee on the show, and everyone being jubilant over a bean being smushed and boiled. Their goals at restoring privileges I do not even concieve of is a concern. I am afraid for myself.

I cannot conceptualize a world where there is enough food, water (Sprite), shelter, and where things are replaceable. This has come up several times recently. As I consider moving, I am faced with culling things that are replaceable to others but the cost stalls me. My bed is fine, but to move it will cost me 1000 dollars. To replace it? Less. So why is it that I am afraid to move because I would have to get a bed that isn’t jury rigged? My bed is in need of replacement if I move. No choice, yet just in case there is no more, I want to haul it across the country. This is just an example. Everything is that way. In fact I have cried more in the last few days over the ideas of having new things than I knew I could.

I have never lived with enough. My first apartment, I never unpacked my things because I didn’t believe I could stay there. This is a trait that is multi generational. This is terrifying to me all the more. I come from a family of hoarders. I come from a family that is so trapped up in the cycle of abuse that we starve ourselves and think we aren’t just in case there is never any more food.

So here is my plan. This takes care of two issues.

At Walmart I am to buy something completely useless on the first. Not shoes, clothing, bags, make up or anything that I actually need. It doesn’t have to be expensive, just useless and something I desire.

Tomorrow I am going to lay out a meal plan, setting a menu of food. I am going to make a check list. At the end of the week, if I have eaten every meal and snack planned, I am going to get a gold star on the proverbial chart. After ten gold stars I get a prize. After the restocking I also get a monster high doll. I am not allowed to buy anymore toys that I keep in their packages. I may even get to a point where I can unbox my action figures. Most of them anyway. The ones where I bought two just so I could play with them can stay in their boxes. I am going to move and when I move, I am going to get a nice bed, that doesn’t have broken supports that are held up by a homemade set up. The bed is safe but that is because I know how to survive.

I know surviving isn’t a BAD thing. The problem is when I am so busy trying to survive an apocalypse that hasn’t happened yet that I forget to live. i forget that being happy is important to survival. I know that eating daily is important and I have always struggled. i know that my family is a pitiful mass of humanity and my baby sister (she is not pitiful but is awesome despite them) and they hurt like this. I am going to escape the pain by facing it.

I am afraid of seeing this for what it is, generational sickness. This is a product of how I was raised and of my fears based on being homeless, hungry, and all of the times I have not had enough. This is the Aha moment and perhaps facing these issues will improve my quality of life. I have had some start on this already, recently M the carer commented that I only buy staples for food and so we made a very large amount of fudge. I am eating some of that fudge now as a reminder that the world did not end because I made something delicious to eat out of pleasure.

I secretly hope that I can maybe consume more fruits than before or some of my food allergies decrease if my body is not strained. I don’t know yet. Maybe the spontaneous tissue tears that are starting up are a result of this too, because there is no cause. Yes I am eating, but am I eating enough? No.  Ineed to eat at least TWO meals a day. The goal is three. What if my eating breakfast makes me physically ill because my body just hasn’t learned how to eat that much food yet?

What if I feel so good and am so happy the world explodes into a Happypocalypse of joy where I really am okay? Scarily, there is pink involved in this image in my head. Horrid horrid pink.

 

Bruises

I have multiple conditions that require that I bruise easily, and I always feel bruised after slight bumps but it isn’t until weeks after the injury that I start to show bruising.

In my early life I thought this was a good thing. It meant that my father’s abuses wouldn’t show and therefore I was a better child. This was directly reflecting the attitudes in my home. In fact my lack of bruising often caused my family to ignore the seriousness of some of my injuries, which has lead me to my current state of disability.

I have wondered often in my life on many topics from “Is Nicolai Tesla Autistic?” on through, “Why does Sylvani try and nurse milk but can drink water?” This is one of the topics I have mulled over the longest. My doctor’s offered no explanations, which at first disconcerted me. We are raised in the US to believe that our doctor’s are all knowing and the ones who behave like Gregory House are the ultimate in doctors.

This prevents people from asking questions, this makes it harder for a disabled person or a person with a yet to be diagnosed chronic illness to be taken seriously. If said person has a vagina and breasts on their person they are going to have to fight to have the slightest ailment taken care of muchless a more serious issue. I became highly aware of this when I started self diagnosing.

Self diagnosing is a huge no no, as this gets one labelled a hypochondriac, even if the questions are meant in an innocent fashion. In my case it was little moments where I met someone with a disorder, such as Reynaud’s the circulatory condition. My case is actually worse than this person’s and as I asked her questions about her disorder and found I had literally every symptom I began to worry. She was nice about it and we both believed I had the same condition. It helped that I would turn blue faster when it was cold or when I was stressed.

The adults ignored the physical symptoms and decided I was somatizing. So I learned to keep my mouth shut and stay away from doctors. I thought for a long time my mother was absolutely right about the medical world. At times I wonder if her experiences with medicine and their misdiagnosis are why she doesn’t go to a doctor, but I feel more certain that it is because an abuser also wants their victims kept away from medicine. This is a part of why people die from abuse so readily. If you cannot get a doctor and have internal bleeding, you are screwed.

Over the years I have never once had an answer for why I bruise so slowly. This has inhibited my ability to know if i am injured in areas where I am numb if the skin is not split, sometimes the skin splits don’t show for a while as well. For example when I was injured on the paratransit. It took me almost a week to figure out that I really was hurt. This was between my spinal cord injury, slow bruising, and the signals from my brain putting the pain in my right leg between my hip or my knee when the wound was touched. I couldn’t find anything in the area my brain TOLD me was hurt.

I am thinking on the life long ramifications of my body’s build. I know, at least I hypothesis, why I don’t bruise like someone with Ehlers-Danlos usually does. Not only because no two humans with the same medical illnesses are identical, even identical twins have interior differences, but a confluence of small veins and low circulation has kept me from being black and blue.

Every blood draw I have had I am faced with a phlebotamist’s lament about the smallness of my veins. Every time I have to convince a doctor that I have EDS, I must point out the fact that not every patient has the significant bruising and though I feel my bruises they don’t always show. It isn’t the excuse given before about deep tissue bruising. Not every bruise is going to be in my muscles, and those hurt in a whole different way. No, my lack of bruising is a lack of blood flow to the injury.

I started thinking on this yesterday as I woke up from my nap and my face resembled a chipmunk. The dislocations were atrocious yesterday, so my face shows the marks still. Perhaps I bruise less because my blood is busy swelling up my head, or my hands, or anywhere but where I expect too.

I can go back to my next task. Between halloween preparations I have been watching every James Bond movie that has been produced, all 22 of them. This is a painful excercise yet it has a purpose. I decided to find out the evolution of the Bond Girl. I remember loathing Halley Berry’s portrayal and being uncertain as to why, so I decided to investigate. I am not liking my findings. I suspect some people may deem them controversial!

Also a reminder: I am not planning to write during October. October is my runaround like a chicken partying month, so I shall resume my current scampering.

“I wouldn’t have done that…”

My violent tendencies were tripped this week, like a laser alarm in my mind. The skulker had no idea they had unleashed a pack of semi rabid half starved trained for violence chihuahuas onto them. I say small dogs because I have yet to meet more than one nice one, and he was willing to attempt to disembowel you with out warning. I am currently keeping mum on the exact details, as I am going to wait until my rage has subsided first.

Lets just say that a business chose to basically threaten letting my Exhusband know where I am, because I didn’t like the way they were treating me and I called them on their stuff. In fact I linked them to my blog so that they can know what was said about them due to their accusations that I’ve been bad mouthing them. So, now that it is clear to they and I who they are, lets talk about why I do things others fear, and stabbing people!

I know my violent tendencies are there. I cannot recall a period in my life where when even mildly irritated firebombing someone did not seem like a great idea. This bothers me every day of my life because I am well aware that most people don’t think this way. If they do, no one admits it. I know when I am angry that I should not do several things. The first is eating, I’ve broken more dishes and hurt myself more times by eating angry than I care to think about. It starts with enjoying how nice it is to stab my steak and then the knife is in someone or the table or the plate is in pieces. I haven’t eaten when angry since I was 13 and my impulse control is greatly increased but not enough so that I can trust myself to not do really stupid things.

I have also mastered some levels of “social normative” activities to work around my constant anger. It used to be my default emotion and it turns out I like moderately content or happy best. I am usually happy not a bundle of putrifying rage that would like to gladly defame a business, but I haven’t once, and I won’t do so. That goes against my moral code. So, when I am angry with a business I usually ask them about the thing that has me angry, if I can I email them. I also hire M or another friend to help me remove the rage spasms from the text.

Most often this solves the issue. In fact it is very rare that the problem isn’t worked out, and I admit sometimes I am mad over small stuff or something I don’t understand and that is a huge part of why I ask questions. If I am expecting a package and it never shows and yo uare Dell, I skip the rage nutering of my emails and skip to calling you and making your tech support bleed out their eyes. That’s because Dell is Dell, everyone who has worked with them knows already that their customer service was trained in hell tactics. I swear my grandmother may be involved in their training, though I am not positive as to how.

The next step on my avoiding making these businesses hate me is explaining why I am angry. When this however earns me threats of a person who very much wants me dead being thrust into my life, when the business is also fully aware of this then it takes a lot for me to not make bad things come out of my fingers. I usually wait a while to stay calm, thinking over what to say. Again M usually gelds my letters of their rage. He helps me to concisely communicate more often than is fair. My caregivers also get to work on this task, but I like M’s method of “I wouldn’t send it that way, I’d do this but if you want to you really can… but XYZ may happen”. It mixes amusement into my thinking as I imagine apocalypses over silly things like ebay cats. I still am laughing at finding Sylvani on Ebay.

If that approach fails then I go ahead and verbally reproach people. I don’t let myself curse them out, instead I let my venom show. I have been told I put tone into toneless text with precision. If I could there are times I would instead insert an internet gnome to pop out of their computers, run around grabbing valuables and stab people to death. That’s the mood I am in.

It’s usually once I reach that “firebomb of rage” letter that I get told often, “I wouldn’t have done that.” I have noticed however that when i do it this way things work out, or I just sue people and then it works out when they are ground to dust under my heel. I haven’t felt this angry with a business in a long time, but threatening someoe’s safety even implicating in anyway that a homocidal maniac should be introduced back into their lives tends to make people with PTSD and rage issues a little crazy.

I don’t know why, but the other time people tell me they wouldn’t do what I do is when they admire me. Sometimes over the same thing. Sometimes I think I say things people wish they “had the balls to say”. This is where I get into the social stumbling grounds. It’s apparently not okay to tell someone that their behaviors make you angry. Instead a woman’s place, as good old mumsy would say, is to silently bear it or just quietly ask them to stop.

I don’t do quiet. I am belligerant. I am rageful. I will fuck them up.

I am glad I think the way I do but today it feels like a burden. No amount of adorable cats or doctor’s with cranial implosions from just getting to meet me can change that. ANother post is forth coming but… I wouldn’t have done a lot of things, yet I rarely mention it to people. I am just angry.

I don’t know when my anger will subside, I do know that most of it is this business causing me undo pain, making me feel like they are robbing me, threatening my safety, and also dealing with Rose dying. I don’t see why it’s taking longer to “get over it” with her than it did Nymph. Then again, maybe it is supposed to?

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