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.

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

 

Pumpkin Pie (Trigger Warning)

a cat with silver fur, black stripes, has wide eyes and is being fed a bite of pumpkin pie

Not how thanksgiving looks inside my head

Pumpkin pie, soft, creamy, and since mine is crustless just a wad of soothing and cold chewiness. The scent trickles into my mouth to tease at me, and is the only Thanksgiving day food I can eat without becoming ill. Mashed potatoes are also fine but must be different than the recipes from my family dinners. No gravy, cheese, and almost always something in the food. Turkey, I can barely type the word. I can barely say the word. I will not eat it. I have been forced to by people using that vulnerability against me and I react to it with a mental allergic response. It is not somatic but the PTSD triggers hard and fast.

This is what I expect of Thanksgiving.

Yesterday I remembered something that has given me a sense of relief. Today as I continue to process the revelations I am left staring down the barrel of gender identity issues. I have had gender identity challenges my entire life. They base in my being autistic and as many other autistic women face challenges of being accused of decidedly unfeminine behavior so have I. There is a root with in the numerous and enduring sexual abuse that has dominated my life and was the end all be all of my childhood. From being prostituted to ministers and the supposed holiest people I know at the age of three and raped by my father to the rape at gun point by a high school boy who didn’t seem to understand this was why I stabbed him with a fork at school when he put his hand on my shoulder. I once tried to cut off my breasts to become a boy, and I have never really appreciated my femininity.I am aware there is more to this, including the fact that I am intersexed physically. I have testicles AND ovaries. Maybe if my mother had eaten, I would have been a male child. Maybe not. I do not consider myself to be of one gender in a sense but I am either feeling male or female.

I have spent years keeping this a secret, and in public I might still. Yet I am thinking this doesn’t matter. My carer knows. My best friend knows. My sister of choice knows. I know. To me this is who matters. I dress according to the way I feel, and even my male side is prone to wearing dark red lipstick. It feels sexy. I have fought and clawed my way through life trying to exist, and I have been told repeatedly that girls just don’t fight back. It is a fiction in a bad life time movie that women can ever do damage, we are eternal victims.

It wasn’t JUST the media that sent me this message. Nor was it subtle. It is my nature to fight back when I am in danger. I have very good survival skills. I am fully capable of killing you if you try to kill me. I won’t murder you but I won’t let you murder me. This has been unequivocally a part of who I am and I have wondered if when I was raped for the entirety of Thanksgiving weekend, so Wednesday night on through a Sunday night, when I was beaten and when the fragmented memories didn’t match the normal abuse patterns… did I even try to fight back?

Therapists told me no. If I had tried to fight back then he would have killed me. Except he thought he did and I have very real memories of meeting Osiris the god of the dead in Egyptian Mythology and having him put me back in my body and ordering me to live. I have marks on my chest that match where his hands were. My father wanted me to be dead, and did not try CPR. He thought I was dead. I don’t know about pulse checking and I am very aware that this could be a response to the very serious trauma to my brain from being bludgeoned with a gun, but I was left for dead.

My mother, who a child loves and believes on pretty much anything until Mother proves to be a person. No matter the health of relationship good or bad, Mothers do happen to be humans and thus the teenager occurs. Yes, my mother spent my entire life telling me that we don’t fight back in my family. The men are the abusers and the women in my family are there to be hit. She has said less of this to my baby sister but the message still is there. Women don’t fight back.

I have had mental hospital doctors torture me over my fighting back, I fought them and yet I was not allowed to have fought back against my father when I was alone. My agency was denied as children don’t fight back unless they are penis bearers. My father made it clear that if we fought back we would die but there are other memories of me fighting back. My siblings sometimes declared their hatred of me because my morals got us into a world of literal hurt. Then again they also wanted me to lie and I am still very bad at that.

When I was somewhere between 11-13 and was raped by someone else and I did fight back the police told me they wouldn’t let the boy press charges. I took a bit of rebar to his head, his father’s car, his house and let his dog go (never came back). I was willing to kill him for what he did to me and yet again, the police told me that women just aren’t allowed.

The media does this too. In movies it is extremely rare for a woman to fight back unless she was already a victim with years of self defense, hiding in terror and her abuser finds her and then she either kills him, takes him back and tricks him, or is rescued by the new romance in her life. Not just life time folks but block buster films. It is never with in the intial attack that a woman fights back. In horror movies, the attacks come in waves and it is finally after a breaking point, or the loss of all of the human shields that the female fights back and often still dies. Running away is good, as happens in horror movies with the cliched fall so the bad man can still get you. This is an acceptable reaction and is something I approve of, just don’t trip.

It is the female who is unfeminine in movies that is the villain. Either a caricature of a woman with sexual appetites such as Famke Jansen’s role in a James Bond movie or a woman who is something ugly, othered or is somehow defective. These are our female villains. Any villainous who is beautiful tends to not be acting under her own charms or supposedly it is more scary for a waifish beauty to be bad. Again, by being beautiful she is supposed to subvert the norms of who is acceptable with in a violent situation.

Women become their traumas. This is the other message I have struggled with my entire life. I was reduced not to a bad childhood but this single moment in a trauma filled life. None of my traumas are my identity even if they chipped some of the facets of my personality or left scars on me that changed the outcome of my personal growth to this point. The good moments in my life had just as much impact and I am the result of everything I have thought, read, heard, and learned. Every person I met, every person I did not meet. Every bit of media I have heard. It is not my trauma that makes me who I am. The Brave One, the entire premise of the film, which I linked above for my example, is that the woman is just her trauma.

This is a perception that removes the humanity from She Who Fights Back. You are no longer human but you are Rape. You are not actually a Woman, therefore it’s okay once more for you to be violent. There must be something wrong with you if you are a woman who fights back, this is the pervasive message I have been living with. There have been years I nearly killed myself over the simple fact that I did not fight back. I could not live with the idea that I did not, even as a small child, try to get away.

I remember when I first began to wonder why I didn’t fight back, it was after I was told by a therapist I would be lying if I claimed I had. I sat there quietly for the rest of our session, I was in a mental hospital at the time. The first time. I watched her face and I wondered if she had ever been hurt too, and if she had fought back. She had long plastic nails that she was tapping on her clipboard. I felt like she was angry at me, and my more experienced interpretation of her expression still reads anger. She went from someone I could talk with to a cold wall of rage when I asked about trying to get away or maybe hitting him back. This was just a few months after and I still had pain in my shoulders that radiated from the underside of the joint, and my hands were still swollen. In fact my hands have never fully recovered from the kick of the gun and my shoulder dislocations started then. We had fired guns before as a family, that wasn’t my first time but I never liked it because of the pain and the loudness.

Even as I am writing this I am playing in my mind the moment I picked up the gun. There was no hesitation. Something again that movies show. Women always hesitate with weapons. Men sometimes do, but they have the option of not. I pointed it at him. I remember his face. His eyes betrayed his shock, surprise, and then anger. I pulled the trigger. He didn’t get to mock me first, he didn’t get any lines out like the cliche, “You won’t do it.” He had lunged for me and I fired the gun until the bullets ran out. I have another new fragment but it is like a single frame of video. I see him in it with a police officer, but everything is hazy, I am just aware he is convincing them that nothing is wrong. This is new too, but I had never expected if the police came that they would rescue me. I learned that well before 1992. I just realized it couldn’t be 93, because my brother wasn’t born until AFTER this incident, I was off by a year.

So I have been fighting this for longer than I thought. I have found the most painful idea in my life was that I would just let him hurt me. This is of course not what happened, and no victim EVER lets their abuser hurt them. Even if you cannot or do not fight back, you did not give him permission. My personal battle was learning this. Fighting back is pivotal in my mind as something important. Even if you don’t win, you must try.

I know as an adult fighting back entails more than shooting or stabbing someone. It can be the moment you open the door and smell someone’s pumpkin pie and think “I am free”. Even if that is not true that little moment can give you a hint of the truth for years. The shifted association of foods during Thanksgiving from being all disgusting and triggering based on being raped, force-fed and torn apart with food as the supposed reason I deserved to be raped and beaten even pumpkin pie has confused me. Why was that pie safe? I still can’t eat my mother’s version of mashed potatoes. My father didn’t like green beans so those were safe until the allergies happened but the pie has been as much of a mystery to me as my wondering who I used to be.

I was not reborn in that moment after all, the idea was just a way of coping with the blatant lies I was told about who I was allowed to be. It is amazing to me how many people, in the name of supposed survival, reject the idea that women can be strong at all ages. This has effected my writing, my game play and what I could do. This is not trivial in any way shape or form. The core of who I was did not break, and that is important. My spirit never broke, and who I am is essentially the same on the base level as who I was before. This means perhaps I did not really lose my innocence but instead it was hidden away, so I could survive.

I do not cry much but I am crying now. How can I not cry for I know there are other little girls, women, people in between the male and female who wonder if they fought back. Who are told every day that this is an impossibility. Children do not have the knowledge yet to think critically about if people are lying, this is a skill we learn as we grow. A facet of being nuerodiverse in this world, and everyone fits in there somewhere, is that people learn these skills at different rates. The ability to critically assess a situation or the media is something that must be taught or it must be learned. Not everyone is capable of this and children have to learn from somewhere.

I am left questioning the validity of mental health for women, children, and anyone with chronic pain or PTSD. How can so many therapists male and female believe that women just don’t think of fighting back? Making self defense a taboo or something that is only allowed after a violation is incredibly dangerous. This is a part of the forbidden dialogue of rape itself. We are warned to not talk about rape as survivors. Victims may be unable to do so and a part of this is, even at the age of eight it was hinted that I deserved to be raped. Was eight year old me just so sexy she deserved it? That’s what I have been told. I also came forward with in the statute of limitations and because my father raped me I was told that my case just wasn’t worth the District Attourney’s time. They beleived me. They just didn’t care because I was a little girl. I have never forgotten being told I am not enough of a person, that wasn’t the first time but that was the moment I lost faith in the world itself and knew I stand alone.

Except I do not stand alone. Of all the lies that came out of this worst trauma it was the lie that I was somehow the worst female in the world, worst at femininity, worst at self defense, worst at being loved and that I was alone and no one else would know what it was to want to die, to suffer, or to fear. I was defective. I do not want to kill myself today, and this is the first thanksgiving in a very long time.

I am afraid for the children of this world. The messages that are being taught, the things that even adult women fetishize such as Twilight with its codependant pedophilic necrophiliac abusive manipulative beastiality domestic violence women stay in the kitchen marry for sex and all the other crap that Twilight is REALLY about underneath the sparkling vampires… these messages are the normal for our children not the exception.

In Between the Pink…

There she sits, in between the glitz and supposed glamour of Barbie Doll. On the pink Aisle, if in stock. The most popular doll in the Christmas Season. An Autistic Zombie! Yes, you did read that correctly, that link is a flash page though when it loads on my slow to load computer, the meta data appears to be set up so that people with readers can play too. I may be wrong since I use just a magnifier.  Ghoulia Yelps is also the best friend of THE Popular Girl, which of course in a high school setting makes her Popular too.

 

I found myself fascinated with these dolls in a way that has hit only once before, with Batman. I remember being worried someone would find out I loved Batman when I was small, so that they would then destroy the entirety of all he was. I had no conception of how big he was until I was old enough to indulge. At the moment, the toys I have are comic book related. After the Winter Holiday Season of Shopping HORROR is over and the toys restock, and prices fall… I am going to get Monster High Dolls. This may be less expensive than the monthly DC release temptation. On average before the Christmas Gouging began, they were fifteen USD. Mattel doesn’t even have the dolls on their site, and every where I have poked the internet people are talking about Ghoulia.

 

I think a part of my connecting here is not just my indecent love of puns for names, which if it wasn’t cruelty to animals and they had accepted would have ended with the cat my carer just got today via “Oh hai strange black kitty rubbing on our legs and stealing the ham from my hand” (verified homeless, a girl, and starved to the point of human interaction) would have been named… Malinda Pettigrew! The name may happen, M my friend thinks it’s horrible but loves me anyway. He also promised me a Ghoulia. He was willing to try and get her now, while the internet is full of others having a rabid reaction to these dolls.

Ghoulia isn’t the only Monster High doll that is a goth’s dream who just happens to be made VERY cool by her disability. Nope, lets go over the list. I will not link you to their website again, but if you want to you can go play games there afterwards. Frogger… I mean…Froggie Dash, and a few others. I’ve had too too much fun and now want a color lazer printer for all sorts of printing of useless but amusing stuff.

The Main Character, meant to be the Barbie (since this IS Mattel) is Frankie Stein, she’s sewn together from various parts of other dolls and is of course the daughter of the professors who created both Frank and his Bride, and they consider her Frankenstein’s kid. Being stitched together, with visible stitches, hands that fly off and do things on their own (creating the amputation effect) and being only 15 days old? How is this one not disabled? In a way she has to learn all her social skills from scratch, she could be equated with some forms of Amnesia, surgical scars, and she even has mismatched eyes and a visible assistive device (Bolts in her neck for charging). This is also what makes her, as Mattel is calling it. “Freaky Fabulous.”Oh yeah and her limbs flying off at inopportune moments? Couldn’t that be dislocations? Ehlers-Danlos Syndrome does cause skin splits and dislocations. Frankie Stein are you super flexible?

On each Bio, each doll (even Miss Popular Cleo de Nile) has a Freaky Flaw. This is of course related to their being monsters. There is another feature which my need for the picture on the box to actually match the Doll or I have trouble accepting they are meant to be the same (I am looking at you Bratz) is not a problem with. These dolls actually DO look like their boxes. I’ve never seen such quality. Or so many casket shaped items. Some of the announced accessories have me flailing in glee, literally, because I can go to walmart and buy a casket/coffin shaped …. Jewelry Box!

In fact, I already accidentally bought something Monster High and had not understood what it was. The post Halloween Clearance socks I bought, pink argyle with little crossbones, were indeed branded Monster high. They are also my favorite arm warmers, and alas… I am babbling. Back to dissecting the disabilities of these delectable dolls!

Skipping to Cleo de Nile, daughter of the Mummy… Cleo is not as white as I expected, since the mainstream Media usually casts a woman as white as me to play Cleopatra types. Cleo is more of a honey color, but she is clearly not a white woman. This is impressive, considering how racist Mattel can be. I won’t link you, you can go find all the Barbie’s that are sold as “Ethnic” or all of the black and hispanic Barbies named Keysha who come with a hair salon, which I can’t find for the life of me with a white Barbie… (Yes, that’s… what? Mattel BAD!)

Cleo is the “Rich Bitch” of the cast. There are some very cliche things going on here, some gender reifications though these dolls also rebel in many ways or at least make mainstream toys I like. More on that later. Cleo’s bio has a flaw as she refers to herself as Exotic, which is in my experience in the media a key word for racism and the fetishising of people of color. Leopard print, Faux Mendhi or anything not white bread tends to be called Exotic. This made me a bit uncomfortable with Cleo so it took me longer to admit I really like her. She also is only sold with her boyfriend. Guess she is codependent or he is at least till they get home and the box is cut up. (I want to keep the little skull logos. Heeh!) She is afraid of the dark. Her disability is less concrete than the lovely Ghoulia’s autism or Frankie’s hands running away however she is someone who is always in bandages. That’s about it, but this bootiful character IS afraid of the dark.

Cleo’s boyfriend, who if I have my way will be dating Jackson Jeckyl or Holt Hyde (whichever I get first), is Duece (as in Medusa) Gorgon. Son of Medusa. He has a snakey Mohawk, scales on his arms, and a thousand yard stare that turns anyone he looks at, regardless of them looking back, temporarily to stone. This gives us a few disabilities. Psorisis or any other visible skin condition. This could be from bad acne on through even some scarring. He’s the most popular guy in Monster High except someone who I will mention later. He also has to wear sunglasses at ALL times. This could be taken to the route of vision issues, but at the very least it marks him as other.

 

Next up on the list is… Clawdeen Wolf. Daughter of the Werewolf. She is the first doll I wanted, before I saw Ghoulia. Frankly if you don’t know it… I am a werewolf lover. I dressed up as one for Howloween and the entire concept was fairly similar to a certain miss Clawdeen. Clawdeen is a person of color, so in the initial line up we have… Two for Two. She’s a black woman. This means you don’t have to fight Mattel for dolls of color. There are two defined this way by the company. Of course they are trying to hint that all of the dolls are nonwhite, since some are green, blue, gray etc. I think this is good and bad, but none the less there is no dancing around. Clawdeen is Cleo’s main rival but they are still considered friends.

The main issue that Clawdeen has is what she considers excessive bodyhair. This is her freaky flaw, shampoo commercial hair… everywhere. This is another one that I felt that “Oh just like me!” with. That’s most of the dolls getting the differences sympathetic jump in my brain. I happen to be a person with what society deems too, too much body hair. When I was younger I was teased mercilessly over this. so, Clawdeen does have a disability as most often hirsuitism is based on medical things. Perhaps she has Polycystic Ovarian disease or Endometriosis and she really howls at the moon because her periods are more than a small pain?

My least favorite of the characters, who I still want (so I can steal her clothes for Ghoulia’s War…drobe…) is Lagoona Blue. She’s the Aussie surfer type, everyone’s best friend. She is laid back and is the daughter of the Sea Monster, though I would’ve thought with her name, the creature from the Blue Lagoon. It could be a copyright issue there, but as you can see these dolls should also appeal to the horror movie nerds that are out there. Oh wait… I am one of those too! Lagoona’s flaws for my liking her? She is just another blonde and the fauxguru thing is a stereotype I suspect my Australian friends don’t like. I could ask them but… that’d just be silly. I have yet to meet anyone who likes being stereotyped.

On to her disability analogy. Lets start with the one that may be either super obvious to you or makes you go”Huhwhat?” Asthma. She’s a fish out of water! Lagoona has fins, so she could also be part of the birth defects that are visible listing, and well she is blue so circulation is obviously a problem. She also has dry skin problems and again, scales. Lagoona’s must have item? Moisturizer. She is listed as an Exchange Student at Monster High, so she’s also a fish out of water in other ways. I still like Lagoona but she just doesn’t connect well with me, what with her liking the sun with it’s shining…

 

That brings us to the doll that started my knowing about these young ghouls. Draculaura. I saw the name on Facebook, someone’s daughter is wanting one and it’s a little too late to get Draculaura now, so the parental lamenting had begun. I googled the name and stepped right into the halls of Awesome. Draculaura took some time for me to decide to be okay with partly because of all the fricking pink, it tastes like literal poop to me. So I struggle. There’s enough black and other coloring that the reaction isn’t so bad. In fact the pink issue has me a bit worried about going to buy my dollies in the future because they are on that …Pink…Aisle… in the toy section and I don’t want to just send M the carer, because picking out your own is half the fun I think. I’ve not had a doll I liked before, except the specialty Goth stuff such as Evangeline Ghastly (not linked because her prices are more horrifying than her theme or lack of diversity. She’s white, white, and even whiter). I never really felt that the Living Dead Dolls were that great. I am not much for BABY dolls…

So I will face the aisle so I an get my fangs on them. So, Draculaura, the most goth fashionably…. I want her umbrella for real, the Monster High Umbrella just doesn’t do it for me with the skull. I like Bats. Not just Bat man but the bats in general are pleasing to me. Bats and Butterflies… someday I will have an outfit themed in such a way. Well Draculaura is a vampire, who is terrified of Blood. She’s vegan, lives on fruits and veggies while taking supplements. Saying or hearing Blood, not even seeing it, is enough to make her faint. I think that’s adorable and it does show something often ignored when a character is going vegetarian or vegan. Vitamin supplements are necessary to help with survival and health.

Since I am often accused of being a vampire by random people on the street because I myself need to hide from the sun or fry crispy, I do like little Ula D, as her nickname happens to be. Her disability could be many things. Just side effects of medication making her sun sensitive, carrying the albinism gene, porphyria (though she’d have to have multiple types for the full effects of vampirism). Plus there’s a disorder that exists where you cannot identify faces, even your own, in the mirror. So that fits.

Now there are more dolls and characters than listed on the website. There are a pair of guys I am listing in one category because… Jeckyll Jeckyll Hyde, Hyde, Hyde Jeckyll

 

Jackson Jeckyll and Holt Hyde…

 

Jackson is a casketball player, and the very human best friend of Duece Gorgon. He happens to have the same tattoo, yin yang symbol, and piercing as Holt Hyde.

Holt is a bit of a bad boy, he has blue skin and fire for hair. Both he and Jackson have classic symptoms of Multiple personality disorder, including black outs, memory lapses, and so on. Holt is the school DJ. I am not sure if this is a positive portrayal but Holt doesn’t seem to be evil, which is a good thing.

Some of the characters not turned into dolls yet so no bio availible (but they are coming)

Spectra Vondergeist, daughter of the ghost. She can do ghostly things like floating through walls.

Abby bominable, an exchange student from up north.

Operetta, the offspring of the Phantom of the Opera who has been on a date with Holt. I don’t like her name but it could be worse…

Oh yeah, and.. the most popular person, big man on campus, is … Clawd Wolf, Clawdeen’s big brother. The undolled characters are mentioned in the story books that come under the guise of a diary with each doll. The first issue (regular clothing) dolls all have them. I am not sure what they have for the Dawn of the Dance dolls or Gloom Beach instead but I am sure it’s something just as cool.

So, incase you didn’t follow the link to the flash website with Ghoulia’s Bio… let me tell you about her. You tell me if you think she’s not autistic.

Ghoulia Yelps — a zombie. Her parents are not named but played in the music video Thriller by Michael Jackson. She has light blue hair and pale gray skin. Her appearance is very studious and she wears glasses. She is depicted as timid and shy and could only speak Zombie (basically groaning; a possible reference to the ghouls from the 1968 film Night of the Living Dead and other films from the Living Dead film series. She is also the smartest girl in Monster High. She has a baby blue colored owl named Sir Hoots-a-Lot.

Glasses wearing Ghoulia is the smartest Ghoul in school. She cannot function properly without a schedule and doesn’t process last minute changes very well. Her zombie nature makes her a bit slower physically, and she has trouble making facial expressions and can only speak zombie.

She loves to read and learn new things, she always fits books into her schedule.

Her pet peeve:

Last minute schedule changes and Monsters who cannot speak zombie. There is nothing quite so frustrating as arriving late and having to explain why to a monster that doesn’t understand you.

A direct quote from her bio that is another hint of the ASD:
Favorite Food:
Brains… just kidding. I actually have quite the affinity for rapidly prepared, mass market cuisine. (Translation: I like fast food.)

She likes all her classes and her favorite color is red.

 

So there it is… my new obsession. I have spent days pouring myself into the internet to glean tidbits about these dolls. I am going to sew them clothing, I already know they come with dollstands but if they are in their shoes they can stand alone, they are posable, seen the cartoons on youtube, decided despite it’s pop quality I like the music video… and… that a lot of depth was given over to these dolls. Between their attempts at normal such as fashionable clothing and bodies that are so weird looking my response is, “Well they must have been genetically engineered that way”… there is depth. They aren’t all boy hungry, the attempts at life lessons in the cartoons are pretty cute, and if these had existed when I was a kid? I would’ve been torn between wanting one and trying to pretend I hated them because of my family.

Still, the popular kid is autistic.

I will warn you, if you share this info with your friends, children, and such and they love these dolls… check comments on sites because a lot of people are complaining about Ghoulia’s speaking zombie. These people seem to forget that not everyone gets to speak. A nonverbal character in what is likely to be a TV series, a movie is being made… so not just “high functioning” but… average autistic…

I am definately sold on Monster High. Besides, in trying to find out what is for sale (iCoffin anyone?) I find hilarious things that make me think someone at mattel has seen one too many episodes of the Godfather. Like so. Freaky beheaded horse! A final warning, right now the MH dolls are being marked up to fifty online. Just wait till after the restocking post holidays. They average fifteen to twenty, and if you can be patient which isn’t easy you can afford more dollies! Oh and feel free to send any extra dolls you find my way!

Here are some links to the media online about Monster High. No place out of this blog is guaranteed safe but I had no issues:

MonsterHigh.com – Flash site. Signing up lets you get activity sheets etc. Addictive.

MonsterHigh on Facebook: Has some unique content, such as a Ghoul to English translation. Most are obvious such as Biteology being biology but this is a place to glean more info.

The Youtube Series: The music video with words like Freaky Fabulous, and the short cartoons (skip the thirty second videos, they are teasers of the next episode)

The Halloween Special from one of the cable networks.

Part 1

Part 2

Part 3

The Phone

I know that it’s something other people with Autism happen to deal with. The Phone. I sit here staring at it every day. It takes me four hours to make a single phone call. Which of course comes after I plan out my calls sometimes four days in advance. The phone… it feels like an enemy despite the fact that my phone isn’t even a smart phone so it lacks the most basic sentience. Not certain if Smart phones are sentient but my carer’s Blackberry says it’s thinking all the time so I will suppose it’s a very stupid smart phone since it rarely gets past the first thought of the day.

I hate my phone. From the phone bill, which if I was willing to risk being out without a cellphone could be less, on to the talking. The talking is the worst part. Why is it people shout into the phone? I know I am quiet and hard to hear but most of the people I know literally yell into the phone. When I had roommates I started asking one of their guests to go to another room since every time she was on the phone she began to yell. The roommates got louder too but this was usually because our phone was a piece of crap landline, and even I had had to yell into it so I wrote that off.

The phone fills me with foreboding. If I could translate that feeling into a story the phone would be the killer in one of my gory little trips down violence lane. The phone did it. Not the man, woman or mutant sewer alligator. It was the act of saying “Hello?” The silence at the other end, a crackle that could be breath and then you are dead, in the dial tone of terror.

This is about how it feels to make a call. I know the phone won’t actually kill me but this supposedly innocuous device creates a whole new level of communications challenge. Even texting can be difficult for me if I am tired or if my hands won’t function. Coordination is never a guarantee. Texting is the best part of a phone however, as I know when it is my time to text.

Sometimes waiting to talk on the phone I pull up a clock, so I can watch the second hand. This helps me to feel less like it has been an eternity since the other spoke when it has been a single breath. I am always angry sounding on the phone, but this is because I am focused on hearing you, understanding you, and frankly, knowing when it’s my time to go.

I often hang up on people too early. I don’t get the phone right, which bothers me. I feel self conscious with the phone. I can’t see you. You always sound hostile to me when I can’t see you. Then the phone brings me bad news. Whenever my student loan people call it’s never what I expect. “We approved you for this deferment but the department of education says your doctor isn’t the right kind of doctor.” Yet, they can’t explain why my doctor is not qualified to sign the paper. They don’t even understand what they are saying so I hit the end button before I yell at them for being stupid. Why would you hire someone who cannot understand and explain what is wrong with the papers? I already took care of this but am I to be a mind reader? Am I to infer that they wanted an MD not an Osteopath? They don’t know the difference and I don’t either. Luckily my doctor’s office does and someone else there can and will sign the papers.

The phone. It’s stalking me now. The only useful thing about the phone for me is the alarm clock. I do have internet on my phone but that is merely a back up in case my coping mechanisms fail then I can wait patiently while I poke at the buttons and read something on wikipedia. It’s about staying calm. In that moment the phone is the worst computer ever.

I suspect the advent of the video phone will eventually occur and I wonder if that will be worse or not. What about those six am calls from idiotic office workers who don’t comprehend that I am sleeping? Will they be more awkward since I don’t wear clothing to bed? I think that’s the entire reason why videophones aren’t what we use anyway. The video phone would level the playing field by making certain EVERYONE feels as awkward as I do on the phone.

The Good The Bad and the Medical Drama

(This is the third time, my internet ate this twice now)
ahhahahaaa Woh woh woh… (theme to the Good the Bad and the Ugly)

Woh woh woh woh….

For those of you who have either never heard this before or just want to hear this while reading here is a video. For the hearing impaired the them is pretty much what I wrote above.

Today I saw the gynecologist about the font of blood issue and the discussion was as I expected. Though to get there I had to nagivate the world and I woke up feeling a bit fired up. I was going to make them see me even if they tried to screw up. I was prepared. So I donned my hat, today’s selection is my black riverboat gambler hat (the bad guy’s hats in every western or gambling movie) I put on make up so I could try and feel at least a little okay, a barrier between all the crap and myself, and went out. I had to take the sunshade off because the transport vans are too short for it, so I was hiding under the hat and sleeves. The ride was okay but the driver was obnoxious, though I enjoyed making him squirm with my honest answers to his invasive questions including, “Oh crap was that rude of me?” I also explained the ADA to him in detail and by the end of the half an hour journey he was very quiet and thanked me for not being mean about his questions. I shouldn’t have enjoyed that as much as I did but I was being straight forward and honest. He did ask me if I thought all technology exists because of disability and I said at least most of the things he takes for granted such as automatic doors and some things on his computer do.

I went into the hospital and popped into the elevator, went up and was immediately surprised that they had renovated the floor plan. So, I turn around and there’s a receptionist waiting to answer my questions. She is here as her first day and doesn’t know where I am going but goes to ask, returns and leads me as far as she can, I read the sign on the door about an alarm and go to back track but a tech saw me and was surprised I didn’t ignore the sign and make loud sounds. I pointed out there is a sign on the door and she said “Well in the two years since they installed that alarm you are the first person to read it.” The last time I came this door was pinned open. I am sure other people read it but they didn’t care about how it would effect other people. I sign in, noting that in this room there are children and pregnant women. One of the little girls is scared, and I am instantly triggered because there is really only one reason I know of for a five year old to be in that office. Heart broken I scribble my information, my eyes letting me read paper today.

I sit and turn my music on loudly, drowning out all but the barest sounds of the room. I don’t want to hear the joys of the pregnant women, nor do I want to hear the sorrows of this child or the frustration of the teenager who doesn’t understand why just because she had sex she has to go in. I did anyway but I tried to be respectful of them because my brain would leap and bound and I will never forget their secrets. Ever. I will try but I know that next time I see a little girl of similar appearance I will think of that girl who looked so much like I did. I think that was what startled me the most. No one, as usual, could tell that something was wrong. That’s what I want. I want people to not be aware that my brain has me in a tail spin where I suddenly connect the new changes in my dreams of demons because of a child’s words in pain, pain she should not feel.

I am pulled out of the dark thoughts by a little boy, I didn’t hear the door and that’s the point of the headphones. Doors make me jumpy and I had parked with my back towards it because that was the best spot for me. I needed to point away from people so I could focus. “What’s that mommy?” “It’s not nice to stare, that’s a wheelchair.” A few moments passed and he was there beside me, “Are you a cowboy?” Not the question I expected. I look up and I can tell his mother is tense, her body is tight and she seems upset. I may have misread this but I instead told her son, “Nope, are you?” He shook his head and rattled of historical details, I could match him and we had a geek fest in the corner. His mother,who I am still watching comes over and asks me why I am willing to talk to him, as if there is something wrong with her son. “Well he started it.” She seems confused by my answer and asks him why he was willing to talk to me. He shrugs, “She’s nice.” His mother now seems worried and tells me he is Autistic, I tell her that’s why he is willing to talk. I am too. I doubt she got why he could talk to me. She seemed stuck on his idea that I am nice and safe when he doesn’t know me. All black head to toe is threatening to the Nuerotypicals, and heavy eyeliner? Crazy goth wheelchair lady appearance doesn’t get nice from them.

I am called in, I wave goodbye to the future cowboy and go into the back. I am lead down a yellow corridor, I am sure there are pictures but I only see yellow, it’s not a bad shade but it is not a pleasing shade at all. It stabs the eye like sandpaper with it’s shade. I had scheduled a specific room because of my disability, and this was not the room we entered. This room was tiny, the door opened and would hit the patient if said patient were on the table which also doubles as Mount Everest. The nurse is confused by the idea of closing the door behind me since I stopped in the middle and look at her and tell her, “This isn’t the right room. I am supposed to be in the procedure room.” It was supposed to be written down but Dr. Receptionist didn’t do this either. I feel frustration, but I am trying to work with people. She goes to check. I try and find a way to park my chair, visualizing first for safety and no, there is no way this room can fit me and a doctor and I won’t park in the yellow hall. That’s not safe for my equipment which I need for daily living.

The nurse comes back and says that they are waiting on a call in to the patient scheduled in that room in a half an hour but leads me to it, because there is no other way. Which is why I specified when I called in, and asked for the accommodation again. There is no other way even with an army of nurses that room will work and the others are full. The procedure room is used for the disabled and cancer diagnosis. It’s no a pleasant room and it effects the nurse. I can tell this. That’s not good but I noticed this last time. There is trepidation with this room. I don’t understand that, because cancer diagnosis can save a life that is lost without it so it’s good. The cancer is the bad.

I am told I can change, the patient isn’t here yet and said it was fine with her to wait. I am honored by this because waiting to know if you have cancer is tense, scary and I have done that a few times. I trade pants for a sheet and perch on this table, which is a safe distance from the ground so if I bungle this? I am okay. The doctor comes in. I find her oddly short. She is kind and we discuss my symptoms and she agrees with my theory that the lining of my uterus got to be too thick and tore things that shouldn’t tear. So we proceed with the testing.

I hate this part because it’s awkward, I feel self conscious and they poke you with sticks. I don’t know of any procedures for men that include as many sticks as when I see a gynecologist. Q-tips are sticks. The biopsy which they attempted to perform includes more sticks. The tool is a stick that sucks things into itself, which is better than cutting. The biopsy failed because my uterus just wouldn’t let anyone in. I did tell her I was having cramps still, and she warned me they would be worse and even the attempt at the biopsy causes bleeding. Which I knew going in, from the last time. It was unpleasant but instead of a hysterectomy there is one thing to try before we go that route. This is good.

Provera and Metformin are both known to force a period in women with my conditions. I cannot take metformin, so we will try provera when I don’t have a period by January. She says if. I know better. I don’t have a minimum of two periods a year and that is part of the issue. My body will let itself go for years, a part of me is fine with this for obvious reasons but the side effects are bad. If I didn’t eat a diet of meat and meat with a side of meat, I would have needed a blood transfusion in the ER from blood loss and my doctor was upset that they did not run all the tests they should have including an ultrasound. I will be getting one of those for my birthday, as three days before said birthday next month I have the appointment. More unpleasantness but I’ve been there before. The worst part is having to pee while they use more sticks to figure out what your guts look like.

I should have been admitted in the ER, at least for observation but I think that was clear from my symptoms. The doctor asked if I was considering suing, and I did not answer. I know I can and I am going to try working with the hospital first to prevent more bungling idiocies in their future. I don’t know that this is possible. I have to try.

I am still stunned at the differences in level of care, but at least in the last ten years there has been a shot at a treatment. For ten days in January I will take provera, this will trigger a period. IF it fails to do so then I get the scissors treatment. I think I know what will happen, and it ends in snips. However, I could be wrong. That feeling in my bones could just be my frustration and tiredness. I am tired of being tired. I am tired of not being able to eat food. The good news is having a period every six months should reduce my acne, abnormal body hair issues and may stop my voice from dropping anymore. I used to sing soprano and now I am an alto. Even when I speak my voice is lower. The one bonus is also a curse in some ways as I have a “male” sex drive, as in the way I desire sex has altered itself. There isn’t a slow cooking of want and thought, there is instead a visual and then an instant need. We discussed this too, I don’t know that I want the ease of pleasure to go away but cancer is bad. Especially cancer in your body where they would have to cut you wide like a fish. If we do a preventative hysterectomy my chances of healing are better. So that’s the plan, if this drug fails then we cut out my sugar and spice. Well at least the sugar. Spice and everything nice should remain, as will at least a remnant of a puppy dog tail.

I have been preparing over the last six months for surgery. Not a specific one but there are several broken things which the only fix is to either leave it be and suffer which won’t work forever or surgery. I have three potential surgeries. My jaw, my uterus, and my spine. Someday they might want to cut around there. So I am gathering things to keep me going when the time comes. The fact that I have avoided most major surgeries until this point is quite amazing medically speaking, because of how much of my body works “correctly”.

I am even working on a plan for Sprite and Nymph. My fear is Sprite’s needs not being met. My having been away for hours today has her draped over my knee, a white hot sleepy kitty. She needs me. I need her. My doctor having anaphalactic reactions to cats doesn’t help things either. I am not resigned to surgery but would rather that the provera works however that is not what my body tells me. At this point I hope that sense is wrong but it has yet to be wrong. I will know before this time next year if it was right and that is enough for me, at least for now.

I will not miss having a goatee if I don’t shave. I will not miss cramping even after the period is over. Both of those should go away with a “withdrawal period” as the forced period is called. My doctor was shocked and called it malpractice that no one had even tried anything in the last ten years because both of the aforementioned drugs are not that new, sometime with in the last five years they should’ve been brought up. Metformin was tried for a non uterus related ailment. Doctors are so tiresome at times. If all doctors followed their own protocols so much would be better. They are simple little things that are ignored and often make the difference.

I am too tired to be angry but I am very disappointed. There is a sense of betrayal here with in me. I trust these people to protect me from my body but they do not. Yet this is what I expect of them too. I have that sense of wanting to just flee this state again. If I could land safely anywhere I would go right now. I wonder if that urge comes from the growing knowledge of just how broken this state and it’s systems are? I am not sure. I just know that my future isn’t set in stone and I am hoping that no one tries to argue with me about having a kid first. I am sterile anyway, but I was told today that medicaid will pay for me to get my eggs scraped. Since that’s just what medicaid should be covering? I almost cursed.

The doctor as she poked me with sticks, for some reason female medicine is an endless line of sticks, she brought it up. She said she has to make the offer. She didn’t seem shocked at my scoffing at the idea. I don’t understand this however. I also am left trying to imagine medicine for women if we were men. There are similar men’s issues to my problems but they have all sorts of treatments from the physical non surgical to a myriad of drugs. Why is it that my medicine for my body has to be archaic because I have a vagina? This is illogical nonsense. The patriarchy just screwed me vaginally, that was my literal thought when I had that revelation. If in ten years the only thing is another form of BIRTH CONTROL? That’s IT? No one tried some sort of other thing? I have ideas that could help medically I think but I don’t have the science to know if I am right.

Once more they have me wanting to go to school. Once more they have me feeling frustrated. I was triggered and in pain and again had people questioning if I hurt as bad as I say I do because I am not screaming. It is exhausting navigating around these iron poles of nuerotypicality. How do they expect me to react? Does everyone have to scream and cry like a baby?

Oh yes and I had an allergic reaction to betadyne in my cunt. That’s not pleasant but not as bad as latex. Turns out that the ER should have also asked if I am allergic to shellfish, and as I haven’t used betadyne in years and always was sick anyway when doing so I didn’t know. The reaction is minor, just a rash and my doctor was very quick to treat it and change the sterilization stuffs but still. Why wasn’t that question ever asked before? I know that shellfish and eggs now have to go on my allergies list for the short list or I am screwed and rashy.

I am going to cuddle this ball of fur named Sprite, she’s currently in her dreams but her body is adorable and soft. Her paws are hanging off into space, her body is curled against my leg and between the two of them and she looks like she is smiling. She isn’t snoring yet but I am going to hold her for a while. I haven’t been able to do so for the last month due to cramping but she is worth it and I think I need her too. After all she always treats me as a person and loves me, with her I don’t have to be stunned at the rarity of a doctor or nurse who realizes I am competent and independent. Even if that happens only once they realize I got to the table my self, without their help. I changed and did it all because I can do it on my own mostly, and the nurses weren’t willing to assist me so I dealt with it to get on with my day.

A Moment in Meow.

I usually start my writing by setting out the images of what I want to write in the title. Sometimes I go back and change it but not really. I can’t put a title on what just happened. A friend of mine hereto after known as the Shoe Goddess and I have been talking. If she wants her name associated with this that’s cool with me but I always want to offer that respect. She and I talked about PTSD recently, and I explained it to her because she asked. She thinks I should write a book and I have been naysaying in my head, I agreed but I haven’t set out to do it but have shied away. I know why. Before I go into the why I will say, I am going to write the book. During the week I am going to outline what I think needs to be covered, and then I will break it into chapters, the same way that I write for my blog. I am also writing a letter to survivors of rape so between the hospital, my body failing to fail the way I am used to, and the usual crap I come pre triggered.

I watched the Temple Grandin Biopic. At first I was angry at Temple, at least that’s what my brain took the feelings as. I even posted on facebook about finding the movie annoying. After about a half an hour I started to understand what had me so upset, at least another layer of it. The Nuerotypicals making the film made it so noisy that I was in pain. It wasn’t the person or the story that had me upset it was the constant noise over noises that they couldn’t hear. It was painful, and I reacted to that pain with anger. I find I have a lot in common with Miss Grandin, which startled me. It shouldn’t should it? The things in common are all autistic things. I also found myself suddenly burning with anger. I spent a good half an hour having a melt down after the credits rolled. It went like this. Credits roll, pills, go to bed stand beside it and start to scream because I can’t take it anymore and a car just went by with loud music which made Sprite run under the bed.

I tried to just go to bed but then my jaw snapped wrong and I got spit on my pillow. Which lead to more screaming. I hate spit on my pillow, partly because even my own saliva burns me. My tears burn me. My face is very red and sore because I cried. Sprite came to see what was wrong, as she always does when I am not okay and I realized what it is that calms me about her. I had a moment. I also just titled this post. The panic was still there, the pain, the sounds but I could think the instant I buried my hands in her fur and hugged her against me. She wriggled a bit because I was not wearing any clothing and missed the blanket. She dislikes the feeling of flesh. I try to respect that.

I petted her, she purred though because she was not comfortable it wasn’t a lot of purr. Then I clicked, I am stimming when I pet my cat. That’s why when I hurt I want her. When I feel the pain of being, because of all the things I think see and hear? I want her fur. Nymphs fur isn’t the right texture. Sprite is like petting a silken being, her fur is something I have never found a match for. So soft and yet it isn’t so soft it hurts. Sprite is in a word perfect, except for where she is not. She let me cry into her, her fur took the wet away so the burning hurt less.

I feel calm again, I can think again and she is bathing to get rid of the icky tears. I say they are icky, she just says wet. So, the PTSD trigger related to Temple Grandin is love. Love for me, witnessing other people who have things that I want, such as love, can set me off. I haven’t let anyone see me go off for years. I go away instead. Her mother tried. Her aunt tried. She had teachers. She had opportunity. She had education. She was seen as different but equal. I have never had that. That is part of why I am afraid to start writing. There is this moment when I get ready to write even my blog when I see every instance where my writing was destroyed. Even a few moments when I did it to myself because I thought I was bad and undeserving of writing. For me writing is painting a picture but the picture has a thousand little pictures. Each letter and word is a part of the image. When I write I don’t look at my fingers to hunt and peck out the letters but I usually close my eyes and imagine the shapes I want, the sounds, and the sensations.

I look at Sprite, and I look at Nymph who was very frightened but also came and curled up with me. I feel a bit guilty for not noticing her until after the fact though this tends to happen a lot. In the mornings she ends up lost in my blanket because I throw it off and roll thinking she isn’t there but she was tucked up against me all along and was what made the warm spot. I swear, she is warmer than Sprite to the touch and the feel. She weighs at most a pound, and when that pound is not on me completely I don’t pick it up. Then again I have a lot less feeling in my legs since the cramping started.

Medically speaking I am better. The bleeding stopped and the clots are disappearing. I don’t have to wear underwear at least for now. I am not expecting this to last for more than a day but I have blisters from the latex that no one else ever seems to react to in underwear. My skin burns constantly and I am still cramping. There is also a new and constant pain, so I know something is very wrong. This displeases me because I know I am going to have to fight for anyone to take this seriously, well anyone at this facility. I am still waiting on the appointment for the CT scan on my jaw as well. If I cannot lose myself, which does happen without my control, and do so without injury then there is a problem. I spent years mastering how to handle my freak outs. No one had guided me.

So I am jealous of Temple Grandin. It’s a white hot jealousy that is about things we were both born with. Family. I also want education but I cannot get there right now. I don’t learn things in classrooms and the set up for correspondence schooling is all wrong for me. I am going to self educate but suddenly I want a piece of paper. I want to see my name. I want to not have people react with shock when they find out I am not educated. I never liked that, some of these folks immediately presume I failed my way through the educational school brilliantly because I wanted to stun people with my mind. I think those people are a bit stupid and if any read my blog, well I think you are stupid for presuming anyone would want less opportunity just to impress people.

I don’t know if the piece of paper would let me write this book. I only think it is the excuse I am using now because my first thought each time I think on it is, how am I qualified to write about disability and PTSD? How am I qualified? I want to make it clear I know I am qualified and Dr.Not Autistic isn’t. Dr.PTSD is false but I write about it to make life harder isn’t. I know I am probably the most qualified person I know of to sit down and write about these issues, especially because I do so every single day. There are things I don’t publish but if I can write I do. I have given up many things but I will always find a way to get the fluid images into word.

I am still angry that people presume autistics don’t have imagination and that this is a symptom. This was the other thing that overwhelmed me, I connect thoughts in a way that is so similar to the visuals used that I am breathless but I imagine. I imagine constantly. I just don’t imagine like other people. It took imagination for Grandin to see what the cows see. It wasn’t a formulaic thought at all but something special. It takes imagination for me to do anything. I use my different mind to navigate the world. My memory of everything I have ever read, that comes into play when I am advocating.

So no more excuses. I am probably going to have to make Sprite wear a rain coat but even as I am dealing with this latest medical drama, I am going to start this book. A chapter a day, excluding days when I have appointments. Doctor’s appointments screw with my energy and writing does burn it off in the best of ways. There will be another post in a few minutes, I have been procrastinating about a topic as well.

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