An Informational Guide: Too Disabled For Contact Lenses? Not Likely!

I was told I was too disabled for contacts a few times in life. When I was a teen and my glasses first began to cause headaches from the weight of them, that was the verdict. The insurance however did cover, due to the heft of my prescription thinner lenses fully. As an adult they quit doing that and it became a three hundred dollar a year expense, due to the needs I have in glasses. I wrote off contacts and the nightmare stories my not so great parents told me about them had me certain that I was a contact lens away from blindness. They lied and twisted facts to make me fear something that is simply to me now. The simplicity comes with experience and adaptation.

I am not a contact lens expert but I am an expert in being disabled. Like all other people with disabilities I am a master of adaptation. It is how we survive. So when last year my ears began to bleed and the pain in my nose was so great I couldn’t bear it I mentioned it to my doctors, one of them was smart enough to figure out that ehlers danlos syndrome plus glasses as heavy as mine may be a problem. A few pokes and prods later and it was confirmed my glasses when I wear them tear my ears veeeery slowly downward and push the nasal bone up into my head. Wearing glasses became one of those terribly dangerous things.

This left one solution. Contact lenses. I am a wheelchair user with an inaccessible apartment, one arm guaranteed to function, limited guarantees of hygiene due to allergies and the sheer number of medical things that can and do go wrong in a given week. Yesterday I couldn’t use either arm and was relegated back to my glasses. I am still not in them full time but that is as I am told normal. As I said I am not an expert. Its about sixty forty, in favor of contacts now however. I spent weeks hunting for answers on how to adapt contact lenses.

1. First things first, expect it to be hard at first. Then easy. Like all things its a skill that takes practice. You will not be allowed to take your contacts home until you can show them in their office you can get them out and put them in.

2. Its okay to not do it their way entirely. What truly matters with contact lenses is the hygienic environment. Since I cannot stand before a mirror much less reach a sink in my wheelchair I began to cheat. I wash my hands very well, dry them on paper towels, then cover my hand rests and controls with more clean paper towels and put one on my chest for the inevitable dropped lens. This probably won’t work for someone using a manual chair but my point is to adapt the methods to your needs as best you can. My contact lens solution sterilizes so I also compensate by covering my hands in it before I begin, and before I go hand wash I have laid out my eye drops, my solution, my closed contact case on my previous paper towel. This means less fussing.

3. Referring to two not doing it their way. The people who will teach you how to contact lense do not often have to adapt their methods and thus may not know how. I was told to get a mirror with a lot of lighting, to use both hands (and just try because lifting my arm and dislocating it was beyond the comprehension of the very nice but not disabled contact lense woman).I did try that at first as there is a hand dance involved. One hand is to pry your eye open and the other to present the lense just so to your other eye. This of course was not possible for me. I adapted the method to my body by using my middle finger to hold the lens and not my pointer, and moving my head to the lens on my hand. I also do my best contact work in utter darkness and have not once succeeded with a mirror. Its pointless as I am nearly legally blind, I hover in that cusp of low vision that comes before it. If I cannot bend my head down to the other hand I will often use one hand and my middle finger again prying my eye open with thumb and middle finger and my pointer to insert the contact.

4. Everyone, able bodied or not, has to adapt. I quickly became aware of the silky sensation of the contacts in my eyes, and I rather find it pleasant. In my case this is in part due to being able to buffer my intensely dry eyes with a liquid barrier. I expected it to be gooey but my lenses are soft and smooth. Being sensory aware due to autism and some jacked up nerves it was easier for me to without vision find my contact lens and control it. I am the fastest to adapt to this that the contact lens specialist has seen, to date. Many people who can see and are “normal” as much as that exists struggle to differentiate the sensation of the contact lens from the solution. You will find the things that simplify contacts for you.

So now that I gave my vague tips that all boil down to, don’t be afraid to experiment a little and adapt, my method in detail is as follows:

Get up, do not put my glasses on as I get a headache going from contacts to glasses, though you may not. Due to low vision I am very adapted to my house and not seeing but may still step on a cat or their toys. If you choose to experiment with this I highly recommend you practice placing your wheelchair in the same spot and with someone there pace your steps so you memorize the lay out of your house. Things must go back exactly as they were or you will walk into things and otherwise hurt yourself. I go to the bathroom, then put eye drops in and set up my lay out at my desk all the way in the living room. Return to the bathroom, wash hands really well. I pretend I am a surgeon. Return to the chair with paper towels and go back to my desk. I go slow when blind and warn the cats. So far no accidents.

From there I close my eyes and see which eye burns less. My eyes burn first thing in the morning and sometimes it never stops. That eye is going to be the easier one. For me it is almost always the left eye. I save it for last. My right eye has scar tissue that makes it harder to get lenses in. However, even without that one eye will always be harder than the other due to the fact even ambidextrous people like I used to be when I had guaranteed arm functions have differences in each side of their body. My scarred up and roughed up eye tends to be belligerent and sometimes swells up from just eye drops. I also sometimes get hairballs in my eyes while I sleep and do not know it. So I take my time and I put drops in until I cannot feel it then close my eyes and wipe away the excess. This last step seems to really help me in getting rid of debris.

From there I pick up a lens. If its a fresh package I still do this as I found a warmed up contact is a lot easier for me to insert. The solution makes the lenses colder and with Reynauds my cold sensitivity is very high, and this took away an aspect of pain. I will not pretend contacts are painless but they are not agonizing and after they are in my eyes hurt less, so its worth it for me. I drop the lens into my palm on my left hand, aka the useless floppy arm, and clean it as I do on removal. I rinse it well then place it on the finger needed for the current eye. I then put eye drops into the cup of the lens after checking it by holding it very very very close to my eye for defects. This last part took some adapting as I still cannot really see it, so much as I se elight changes without my glasses. So I had to learn what cat hair, my hair, extra grime, too much skin oil, and tears look like via trial and error. This is also true of the dreaded inside out lens. The light refracts differently and you just have to learn. This part I still try for when I do it in the dark but its harder. I needed total darkness at first to succeed due to light sensitivity, and built my way to being able to do this with lights on.

Free of defects I then move my eye to the contact. Thinking of it this way means for me there is less fine motor involved. Others may need to approach it the other way around. The eye drops will sometimes spill or fold the lense but often I get it in on the first try. I close my eye then add more eye drops. You may not need as much ocular hydration but due to having thin eye tissues I have the worst case of dry eye my eye doctor has ever seen. This is a trait that the other people I know with Ehlers Danlos seem to share.

I keep that eye closed and repeat the process with my other eye. If my eye burns and eye drops do not solve it or hurts I remove the lens. There is a list of impossible things you will possibly be told by your contact lens specialist such as “Its impossible to put a contact in backwards.’ No, you can. So its important to remember if your contact hurts take it out. Sometimes I missed a cat hair, once it was torn, and once I had torn my eye the night before due to ye olde super fragile tissues and the lens being stuck to my eye from dryness. I thought I had hydrated it enough and was wrong.

I change the paper towel daily for this last bit before we tackle removal because that has to be adapted too. Rinse your lens case as needed for your solution. I had one where it was a no rub solution but the solution itself was too hard for me. No room for shaky hands or error, then because the peroxide base turned to pure water my eyes reacted and it hurt. You will during fitting be asked about these things, depending on your needs you may have a LOT of options or a narrow field of options for your solution. There were only two safe for me to even try and the first failed. I was lucky that BioTrue which is essentially tears works for me. It might be wrong for you. So clean eye case, leave it where its safe and can dry.
I may take my contacts out anywhere from four to eight hours later, I try to not go over that as personally, and again this may be different for you, my contacts start to get really dry about six hours in and I need epic amounts of drops. The when depends on how I feel. you will master your own eyeball sensations for it. My personal gauge is if my eyes still feel “tired” after eye drops. Often for me tired eyes, or the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

Removal:
This is for me much harder than insertion still. I am tired so my body is less coordinated. My lenses often do not want to budge. I go through more eye drops at the end of the day than any other time. This is due to the eyeball tear and being cautious. It also has prevented more tears, even in similar conditions of dryness. I was told to press on my lens and drag it with one hand while prying my eye open to get my lenses out. The method taught to me NEVER worked for me. What I do is I look to the side, then with one hand pin the contact against my eye lightly, if it does not squish a little I add more drops. From there I slide the lens towards my thumb adding a little more pressure. This is not poking my eye but a small amount of pressure and it is to me painless. Most of the time the lense pops right out and I can proceed with the ascribed cleaning regimen for my lenses. I then put eye drops in my naked eye, and close it. I always do this one handed, forgoing the hefting of lids to get past my lashes but do open my eyes as wide as I can. This is certainly possible in part due to my eye shape.

I hope this helps someone considering contacts. There is no “If I can do it anyone can,” but if I can do it a lot of other people surely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help. Don’t  be afraid to do it your way, there is no one way, there are just standards that you must keep in mind. The most important thing is cleanliness. the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

ely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help.

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.

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

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.

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.

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.

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.

Not All Expectations Are Positive. (Trigger Warning)

Nymph taught me something. I didn’t really know the words for the lesson but she taught me something special. I have always tried to fulfill expectations, and not everything expected of me is positive. The expectations started out as parental, then became my own. I spent years expecting myself to fail because I was unworthy of success.

The expectation for a kitten in a new house are as follows.

1. Existing cats will fight with the new one, no matter the age. The cats will fight for dominance. Kittens cause less of this but there will be yowling and fighting.

2. The kitten, like a new puppy, will spend the next two months crying for it’s mommy.

3. Kittens make messes, your new cat will probably poop on your bed, the floor, and miss the box a few times.

4. Kittens need constant attention.

5. Kittens will bite, tear, and claw.

Nymph has not met most of these expectations and the one she does, is not in the expected manner.

Truths about Nymph.

1. From her first moment in the door, she has been loving and gentle. She has not fought with Sprite except in the manner of play fighting. She has only cried out in pain when she is hurt because she ran into a wall or fell off of the couch and is hanging upside down and needs heroic rescuing. This has occured twice now, but she has mastered getting into the window.

2. Nymph does meow a lot, but her meow is musical and very sweet. She sounds a bit Siamese but without the added tones that I find unpleasant. She has the prettiest meow I have ever heard! Not once has she cried out of loneliness while I have been around. She has a few times called for me or Sprite, when disoriented or lost behind … the couch! She usually calls for us first thing when she wakes from sleep. If I speak she is quiet coming to sit on the floor by my chair. Sometimes she tries to get up here. She is quiet all night long.

3. The first day I had her I was holding her and she had to pee. I could feel her poor bladder stretched out. So i carried her to the litterbox, set her in and waited. She went, and hopped out. I did have Sprite teach her to cover her crap, because it hides the smell. She now over does that and will put it as low as she can. She has not once made a mess. She did vomit from eating too quickly a few days ago, but, that is different than the expected mess, and she has learned her limitations now. (She also REALLY likes Salmon).

4. I need more attention than Nymph it seems! Sprite has helped Nymph to get enough play, and I do play with this darling girl but she is okay if I ignore her. She does check in with me, and did about five minutes ago. She makes sure I am still around when she thinks I am too quiet, and I see more of her when I lay down. The chair is imposing and contributes, but each day she shows she is independent. She will play with the toys by herself, or she will play catch with Sprite. Catch is literal. Sprite flings a toy with her mouth, and Nymph returns it after pouncing it.

5. Nymph likes to claw things, but she prefers her scratching post and toys. She has scratched me once, though it was purely accidental. She is also teething so she wants to chew things to make her mouth feel better. She’s apparently swallowing the baby teeth that are falling out and has at times skipped the dry food even if this makes her hungrier for a day (I feed her extra wet food, because I am such a darned softy for this kitten) and every so often will go after my hands. She wants to nurse my pinkies. Still, all I have to do is say No, ouch. She has learned this means to stop and always feels bad. I get extra cuddling from her after.

This shows me two things. One thing I knew already, Sprite isn’t the only super amazing genuis cat ever born, and the other something I should have known and have at least figured out. Expectations are set before us, but not all of them are worthy of us.

People expect me to disappear when in public because of my disability. Today I punched someone, the third since my chair became a part of my life. Every time I go out people act like idiots and their expectation is that I enjoy inane questions, sometimes verbal and physical abuse, and I will just take it. Each time I have punched someone, I have found myself confused at the glee that others show. I do not expect glee at an act of physical violence. I often come to the conclusion that this reaction is because I did the unexpected and also I did something that these people desired for themselves.

Today a woman decided to poke me. I was waiting in line at Costco, my carer was in the restroom. She had been doing the potty dance, so I told her she should go because I could manage the transaction, my things were already unloaded. I asked her to stop nicely, I always try to be nice first. I am working on skipping the nice but I don’t think I can. She didn’t. I asked nicely twice, and snarled it. Upon being snarled at she put her face in mine. I held my breath incase she had eaten a cucumber and I punched her as hard as I could. I can punch hard but it hurts me too. My shoulder is aching and for two days my right arm will be of less use.

I never really know what to expect once I hit someone on one level, on another I expect for them to hit me back. No one has. The first person I knocked out, the second I don’t really remember today I just remember sore fingers, and the third ran off in tears. I think she called me names but I couldn’t understand her through the wailing.

The expectations of witnesses are to panic. No one has yet. Instead, people find my striking a bigot amusing. I get told variations of good job, I wish I could, and today a money saving coupon for money off of my purchase (I saved ten dollars!). I expect security. I expect reprimands. That has yet to happen. The cashier had been about to interviene, I realized this after I had hit her. She hadbeen speaking to the woman. I had already committed myself to feeling flesh on flesh and the spark of violence. I wasn’t angry. I was panicked.

I don’t hit out of anger. I expect it, when I am angry but the more I want to hit the less I let myself. I have yet to commit an act of violence with anger as an adult. As a child I did so mostly because I thought this was what was expected of someone when angry. I literally did not know better. I do now.

I know I could have taken care of the situation without hitting this woman yet, I feel GOOD about striking her. I knew immediately I was about to melt down if I didn’t contain the situation and put my headphones on, but I could keep one ear open. My carer missed the entire situation. I think the woman that I hit waited until she was gone before seeking to touch me. This means she was a predator. This means she was a threat. This is the time of year when I struggle most with violence, the fear of being hurt grows. This used to be the start of a half a year of self destruction followed by a half a year of recovery before I would be destroyed again. This cycle is ending.

I am fighting it. I was told I never could. I was told the expectations for me as an adult were not good.

Adult Expectations for Kat

1. You will never live on your own.
2. You will never work.
3. You will be in and out of institutions because you aren’t good enough for society (a therapist phrased it this way).
4. You will end up in jail.
5. You will commit suicide before you are 25. (This was before I was aware that I am supposed to die every year from my disabilities and illnesses.)
6. You will never get married.
7. You will be an abuser if you date.
8. No one can love you.
9. You are not strong, you can’t be independant.
10. You cannot take care of yourself.
11. You will always be lazy.
12. You are a hypochondriac, every time someone has a sickness you think you do too. This will lead you to self mutilation, and may be the cause of death that gets you before suicide. Not that it matters, because you aren’t a productive member of society.
13. You aren’t creative. No one will want you to be a writer, an artist, and you don’t sing as well as you think you do or you would be on the radio.

I list them this way, though I feel a few are redundant, because this was the list I was given when I turned 17. The therapist at the mental hospital I was in told me I was hopeless, that I would never make it to adulthood, muchless the twenty five mark. He made it clear that I was so valueless that there were no positive expectations for me. He said something that has haunted me more than his lack of respect. “If you were more like your older sister, then there would be hope.” He had never met H. He had only heard my mother’s biases. My sister was like the dead in a way, in that once she left she was treated as the saint that could do no wrong. Mind you, she ran off, got married to a close blood relative and had babies that she couldn’t take care of.

Yeah. She’s better than me in his eyes. I was angry. I believed him. I realized then and there that this was how the world saw me. He rehashed everything that my abusers had and would say. He took me down to nothingness, but as I was already as low as I could go he gave me something else. The first sensation of a spark of self respect.

This was not his intent. He was working on having me placed in a group home, because my mother agreed, I could never come home. After all, I was/am an evil horrible monster that will destroy family values and all that she cares about. Right? (Probably still am in her eyes… )

I behaved as he wanted. I learned how. I went to the Ranch, and I learned how to fake it in society. I learned the right facial expressions for the moods I have, according to other people. I don’t bother trying all that now, though a lot of that programming is still there. If I glower when happy, it’s because of pain. If I don’t act like a perky air head, it’s because I don’t feel like one. If I do not meet your expectations it’s because they are wrong.

The Truths About Kateryna Fury (Add Jackass in parenthesis to each statement. That’s what I feel when writing this part. Boy was that therapist an unqualified Jackass):
1. I live on my own. I have lived on my own as often as possible. I stopped living on my own once for financial reasons. I thrive on my own. I will never live with other people, unless it becomes state mandated, and then I will sue for my freedom.
2. Kateryna picks up her resume, skims it over and looks at the myriad of work that she has done. She notes her charity work, and with a smile that shows malice mails this off to the Jackass. (Novel Style Oh snap)
3. I am going to say this once. Needing the assistance of a therapist does not make you weak, it does not make you a person without value, and it does not mean that you are unworthy of society. If I need to go to an institution I will. I do not think I need this. Yes, I have mental health issues including depression and constant suicidal ideation (the words of the Jackass), I deal with PTSD. I learned the right way to handle this stuff… from therapists that are not jackasses. I have not set foot in an institution since becoming an adult, except once when I was hallucinating from pain and mistook this pain for psychosis, as I had yet to learn how to feel the difference. I was NOT admitted but instead had the doctors send me to the ER for medical reasons. I was given care and it wasn’t all in my head. I haven’t even found a therapist yet and have looked for the last year but I am not in the institution, nor will I go there. I’d die first because you work there.
4. Jail? Hmm… I do punch people. The only threat of Jail I have had was an illegal one. I do not break the laws, and the reasoning behind this statement was PTSD related. I hit people when I am afraid, and PTSD means for me constant fear. Finding a way to free myself from my PTSD and the link to my reactions in Autism set me free. I may go to jail someday in the future but I doubt it.
5. I turn 26 in September. So far I have not even tried to kill myself as an adult. I may want to at times but in reality that is internalized garbage from shit factories like you. In actuality a few of your patients have died, I know because we did know each other and it made the news. One was murdered, one was a suicide by cop (The patient you told me to idealize no less, though I mourn her you sure suck at your job, Jackass). Another overdosed on drugs. Me? I get my drugs the legal way. I follow my doctor’s orders. I do deal with my depression but I also know that when I want to die it’s pain. Pain people like you cause. Jackass.
6.I got married. I got unmarried. You were wrong, and your statement implies everyone should be married. So you wanted me to follow socially normative behavior instead of doing what is best for me. You wanted me to find someone who could put their penis in me, regardless of my sexuality. In fact you out and out told me I could not be a bisexual because bisexuality was an illness. I love all genders equally. All. Not two. All. I am Omnisexual, Jackass. Your white heterocisgender racist able bodied male privilege is showing. Jackass.
7. I figured out before you were done trying to make me give up on life, since that was your apparent goal and you had such high expectations for me and hopes for me that you were wrong and blind to much of reality. I knew this then, when I was so drugged up I couldn’t think and can barely remember much besides you and your hateful criminal actions. I understand, you presume that I should be like my sister who IS an abuser. This must be why you said this. You don’t believe in people breaking the cycle do you, Jackass? I will not be abused nor will I abuse. My first thought with each action is about consequence. For me. For them.
8. Jackass. (I believe that says enough). In case that wasn’t clear, I cannot count the people who love me and whom I love, because the number is infinite, as I cannot count that high. Jack. Ass.
9. I am the strongest person I know, and I know many strong people. I do know that sounds prideful yet, I can only assess others by my own knowledge and for me, I am the strongest. I think I have to be as well. My strength is not physical but mental, the very thing you thought I did not have. You drug me into a fog and decide I am stupid. That’s good medical care. Yes you have an MD and the whatever it is for psychology. Oooh. You are a Jackass anyway! Maybe even more so. Instead of paying attention to your patients you let me walk around with gangrene, you let me walk around with severe and deadly allergies, and a giant tumor in my intestine and buttocks. I did not cry or scream. Even the nurses commented on this when changing my bandages, I should’ve cried out more. Does strength mean crying out? Does it mean silence? For me it is both. For you? Obviously you are a jackass so what does YOUR opinion and expectation matter Dr.Jackass?
10. Hmm… I can too. I do all the time. In fact having a caregiver is a proof of this, as I had to advocate in order to get the need met. So my body wore out because I believed you… Jackass, you are again wrong. I can care for myself and I do with each breath.
11. Error, this is invalid. By not working myself to death I am lazy in the world of the Jackass. Therefore, I have never been lazy. Jackass.
12. Funny, everything you said was in my head wasn’t. Everything you said wasn’t real was. Someone is an unqualified Jackass! Or are you overqualified in your credentials for being a jackass? I get it. Therapy is, for you, about ignoring the body completely. I remember how angry you were when I had to have not one but two surgeries under the umbrella of your care, and… yes… I did survive and still have a crappy body. It turns out NOTHING was in my head in the realm of hypochondria and every disease that I thought I may have and wanted to ask my doctor about I do. Each time you coddled the other girl with Reynauds and made me suffer, that was wrong. Then again you told me that though I had signs of being Autistic I couldn’t because I am a girl. Hah. Sexist Jackass.
13. Well, this was added on just because it speaks for itself. I sing, I write music, I write audio plays, I write stories, and I write here. Someday you may read this, wondering if this was one of your patients. The answer is yes. If you are a therapist read this and pay attention. How much of this have you done to someone? Why give up on someone and tell them? This harmed me. No one will love me, everything I am passionate about is worthless, and… the most damaging thing a therapist can do is reiterate the words of an abuser.

This was the best therapist I had had up to that point. Each one tried to stick so many labels on me and not a one, even this jackass, saw me as a person. Each one only saw flaws. Some didn’t care about my not wanting God and others required it. I faked being a Christian until I was on my own as an adult. I did this in order to escape more abuse by THERAPISTS.

I also question a profession that’s name can be split into the rapist. I question a profession that tells the victim they must abuse. I question a profession that though it an be helpful can do so much damage. I question anyone that tells any person that there is no chance something is medical. I question why someone has expectations of me at all. I don’t think people should.

I will always strive to fall short of expectations. I know some are positive but for me expectation is obligation. If I succeed and am not expected to, there is anger. If I do not succeed and am expected to, there is anger. Expectation is also the measure of success. I have no expectations of myself, I merely focus on living and being happy. My happiness is more and more common.

I am still hunting for a therapist. One that can understand that therapy itself should have a trigger warning. One that does not victim blame, one that does not set expectations.

I don’t have a life goal right now, because life IS my goal. I will not work again, for a long time, because working would probably do me in. Why is this an instant assessment of a person’s value? Why must I fit in with your expectations?

I am glad Nymph opened this door. I wish it was free of the PTSD, but nothing I do can be free of that. Maybe someday, but not this one. This is also the reason why I have felt guilt for suggesting that someone finds a therapist. Yet, the good therapists are the ones who help people. It’s a shame they are so rare.

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