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.

Dear Mattel

This is posted here because I cannot mail it. So I am going to try to hit their twitter I guess. I can make one of those right?

 

Dear Mattel and Creators of Monster High,

My legal name isn’t Kat but its the name I use in every situation where I do not have to sign my legal name. I am sure this letter will be full of awkward segways like that. I am an adult with many disabilities, autism and I have been struggling my entire life to survive. I did not have toys as a child and I never let myself open the few I picked up because I couldn’t resist the beautiful sculpture of an action figure. I frequented the toy department once I was on my own because it is a place that makes me happy. Yet I never let myself have girl toys or anything I would want to play with AND could open.

Then Monster High came about. I was drawn immediately to Ghoulia, though I have to say the only time I do not like a Ghoul is when they are so pink it hurts. Draculaura is an exception to this. There are personality issues with the cartoon but my home is full of toys. YOu see, I could afford one doll and I saved for my first Ghoulia. I was terrified to buy her because I did not know what to do with a doll. Then my state never got the dolls. I waited. I checked shelves. I hoped. I even ventured to Toys R Us before I finally gave up and got a Bratz Doll.

The lack of quality repulsed me and in frustration I nearly gave up. Then a person I helped to start their own business asked if I liked Monster High. I admitted I wanted nothing more than a nonverbal Ghoul. You see I am an autistic, and sometimes I just cannot talk. My voice is there in my mind but it is trapped between flesh and the space between existence. I can write anything down but that is not always compatible for communication. Sometimes I flail and just noise comes out. Ghoulia is very much in line with my autism experiences and for her to be a beautiful fashion doll blew my mind.

She sent me Ghoulia. It took me three months to open that box. I held it every single day. Often holding my breath and shaking with fear of opening the box. I was afraid I would break the doll. Eventually fiddling with the edge of the lid tore it and the box was open. I pulled her out, the soft silk of her hair a sensory thrill. I studied her. She was perfect. She still is I might add. I took no chances with my cats getting her and put her on a shelf. Then I fiddled some and played with her hair. I ended up playing with her for hours. I felt free, it was fun and I felt good. A gnawing depression I have dealt with my entire life abated some. There was no judging or working or trying. I simply had fun with my doll.

The next time I went to walmart I had just enough money to get the Deuce and Cleo two pack. This was mistakenly put on actual clearance, not their “we just say its clearance” that they often do so I snatched them up their first day out of the box. I was told they were new by the toy staff who I had become friends with. Then I went online to find out if other Adults collect Monster High. I met my best friend (name removed since this is being publicly posted since I know she would want that) on a forum somewhere. I was shy and did not want to talk to anyone but we connected. The ether of the internet let us find one another. She too is autistic. She asked if I wanted a Frankie that had just come out as she had two and I accepted. She sent me a giant box of things I have yet to see hit my particular shelves. New Mexico is not the fastest on the toy uptake. In awe I asked her how much I owed and we have spoken daily since. She sends me dolls often, and introduced me to a Facebook group that was more comfortable for my pacing on communication.

There I met Heather. Heather is a local woman, she has a kid and is very much a walking Operetta as far as fashion goes. I am not sure if she would want that said but she quests for the first release of Operetta still. Being as disabled as I am, I am writing this with no idea how to send it because I want to tell you and others how these two women, strangers I met online via dolls saved my life. Over and over. The family I do have is dangerous to me. Their ideological views mean I must die. I survived years of abuse as a child that put me in a wheelchair though my genetic structure would have eventually. Ehlers Danlos Syndrome has plagued me and every injury just stays with my body. I need a caregiver and due to abusive agencies and at times what I call failgivers, the thieves, the abusers, that lot, damage me. I had my entire Dawn of the Dance series stolen. Love sent me Ghoulia after that but she dances alone without the others. Their arms were ripped off and mailed back to me chewed up by a woman who did not want the actual work aspect of her job. That happens a lot, though my dolls are not usually maligned. Its something every time. Last time? All my skirts and pants.

I am writing this after a month of hell. Its not even over yet but I need to put this out there. Every day I talk to these women. This means despite being isolated I am not alone. It means that I do not face strangers in my home without feeling that i at least can talk about it later. I am a mess of agoraphobia and territory challenges, the worse my pain is the worse that my territorialness grows but I can suppress it to survive. I do every time I let a carer in. This month I have not had much care. I had an agency abandon me illegally. Their replacement abandoned me after I complained about my stolen skirts and pants pointing out I have nothing to wear and with recent mystery illnesses atop everything else I have no money for skirts. It took me three months to save for one that I never got to wear. So I play with my dolls while I call people and try to get my needs met. I am lost in paperwork that other people are responsible for.

I have not seen a carer for two weeks and I do not have local family or friends in the traditional route. I ran out of access to drink and food yesterday and I asked for help from anyone on the doll forum local to me. It is dangerous but I cannot live without liquids or food. Heather rescued me. She brought me food and drink that I am not allergic to (a seriously difficult challenge) and she also got my pain medication. It has been a month since I had it. I was dealing with everything in a mire of agony that left me wanting to die. Wanting to die does not mean you do and I am not the sort to kill myself from pain. I considered it a long time ago and decided that I would find a way to change the pain. Dolls do that for me. The myriad of color, awesome shoes, and the generosity of the people I have met? This is what makes Monster high for me. I would love my dolls anyway but the gifts from others, the rescue from my situation as much as she could manage? Without Monster HIgh I would be dead. Probably more than once.

I do not make friends easily and my medical fragility includes a compromised immune system so I rarely get to see my friends. My dolls have become a physical representation of those relationships in my home. I have not felt lonely in years. I struggle. I fight. Then I doll. Sometimes I tuck my Ghoulia into my bag and carry her with me to appointments when I am very stressed. She is not a real person but she represents Love and Heather. She represents the others I have met online.

I have been gifted nearly every Ghoulia available by my friends. I have bought personally ten dolls total but I have thirty more. I have never been much for things but Monster High is special to me. There have been moments where I am not sure what I would have done if I had not had those reminders of care. I have been in a lot of pain my entire life. Monster high eased that. I never liked Barbie, though I admit I have a few now that snuck home in my cart. I never connected to her. With Monster High I do. Barbie demands perfection. Blondness. Monster High demands individuality.

I am going to print this and mail it eventually but it was written February 6th 2014. I have no idea when I will have care again, but I know that I can ask for help and I am not all alone in my city. Monster High gave me that. The world can be a terrible place, without much joy to be had. I never got to be the kid playing with her dolls but now I get to enjoy them. I think it may be the same. Little moments of a childhood that I steal back from time. I never got to play and now I do.

I am always going to be in pain. My body is twisted from abuse and time. I have had to make hard choices to survive. That meant cutting out my family because they would kill me. It meant learning how to fight for myself because no one will do it for me. I have been homeless. I have been the battered wife. It was not until way too recently that I got to figure out how to be happy and how to have friends. These friendships will last my entire life. These friendships I would not have without my dolls have kept me alive. It is very easy to give up when you hurt, when you are on the edge of starvation. I live without a safety net. I am fragile and my body is weak. These friends of mine give me strength. My friends came with my dolls. I cannot envision my life being this difficult and me fighting so hard if i had no one to share with. I may rarely see them, never touch them, and fight often just to speak to them but I am not alone.

I know that this letter contains dark and sorrowful things. Most of my life qualifies as that. I have known happiness for four years. No life where happiness is known is unlived. I would have a single friend, who while he does not get the doll thing is the one who encouraged me to buy a doll anyway. He has cared for me and is responsible for a good portion of the dolls even though he often doesn’t seem to really get it. I would have one friend for certain without them. Now I know countless people of diverse lives, around the globe who also share in my happy moments. I do not share much when I struggle because I do not want to make them unhappy but I can when I need it. I wish I could be as generous as they have been to me. My friends give me so much without even seeming to try.

The gamble you took in releasing Monster High was big, I knew it then. I am glad it paid off and that you all took the risk. I of course still wish you would use less pink in the doll lines but I am enduring one of the worst moments of my adult life and I survived it because once upon a time… I met a Ghoul.

Yours,

Kat Fury

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

Advocacy: Lets Help Amanda Baggs

Long ago when I first started this blog I received comments from several people. It startled me. THe idea people would read this blog. Then I had to put it away and found out people didn’t quit following. So with that in mind I am writing the first advocacy post in two years. A great deal of what I learned about advocacy I learned from Amanda Baggs. She was kind enough to email with me for a short period when I had just survived my exhusband and I found comfort in her words. I was able to keep going because I did not feel alone. I didn’t feel trapped by all the things in my mind or the way I see and think anymore. Amanda is one of the most powerful advocates I have met, not in the sense others see power but in her effect that I can see.

These links are PTSD trigger alerts. Simply put, Amanda has been tortured by the hospital that should have helped her and is being bullied into a dangerous and potentially deadly situation. Here are the links and they do include how you can help. Sharing this post or these links will also help.

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/no-anesthesia-for-disabled-woman.html

http://webmuskie.tumblr.com/ This tumblr has an entire series of documentation posts about the event. This is the first hand source of the info.

Please do what you can to help Amanda get her needs met and not be punished for the malpractice of her medical team. I am going to go curse into a corner and figure out how to make the calls around my brain tomorrow.

Update: I redid the links to the blogs, they should both be working now. I am not sure why they weren’t since the links are the exact same. If issues persist please let me know.

 

Bad Romance

I woke up from my nap today literally singing Lady Gaga’s Bad Romance. I had been dreaming strange things, but nothing frightening or bad. My brain is still processing the death of my exhusband and this song came out just as I was having my awakening after surviving the horrors he put me through. For the last few years it has been a comfort to me in ways, because I do not live down to the lyrics. The catchy tune was there to be a stress reliever when I needed it. It was my anthem to not return to the abuse, to not trust his platitudes through my door, and that the fears that I felt were valid. It was the musical reminder that I had survived.

I have been thinking today about all that I have survived. I cannot list it because my hand, recently injured but healing, won’t last that long and while my health has never recovered from his abuses and never will my mind has. Without knowing he was dead I had begun to push myself, because I decided to live. I went to the mall we used to frequent. It was his favorite place and I needed things. Instead of just getting what I needed and bolting I went through the entire mall and had fun with it with my carer. I even went into the bookstore. We made a day of challenging my PTSD while rewarding the impulse. I found things I would have bought online for four times as much, which for me is a reward. Apparently frugality is all I need? Frugality and dolls.

In those struggles and the darkest moments when I couldn’t even go out my own front door, I found my willingness to live. I was never willing to let him imprison me in this home because of fear. It wasn’t about him winning, but it was about being alive. I felt free of him before I knew he died and the freedom feels all the sweeter because I overcame those emotional things that I could. I will never sleep with my door unchained or unlocked, but I will go out more. Being afraid is exhausting.

I may date again, I may not. All I know is that the end of that last Bad Romance merits a playing of the song one more time. I am trying to remember why I fell for him and I can. That easy charm, saying the things I needed to hear on an emotional level and even the cats liking him. I wonder where that man went, but even him I do not mourn. I find myself mourning for his children. Not because of their father dying but because of the pain I know is in their lives. In the end though, it is a party at my house. Ra ra ra!

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.

REM Sleepwagon!

I am exhausted all of the time. I see the world sometimes through a hallucenation caused by the lack of sleep. Those are way more fun than PTSD overlap or other scary things. When it is just a lack of sleep everything looks better. My hair for instance is not short but a loooong princess’s hair in blazing red. My clothing all look like gowns with beautiful gems. The way I would dress if it were wheelchair friendly (working on modifying my actual gowns, though I still need to get me some gems to encrust them with.) Sprite and Nymph look the same, maybe a bit sparkly. Everything looks great. Physically it feels like crap.

I haven’t been sleeping, my body sleeps but my mind sits and spins in a cycle of thought, I am trapped there. I don’t know what is keeping me there because it isn’t pain this time. It could be PTSD. I think it is, but without sleep it gets harder to think, harder to feel. I can’t feel the music today and that composition job is waiting for me. I need to get to work on it but I can’t. My hands are tied by a need for REM.

I dreamed two nights ago or I would be approaching a psychotic state. I know after two weeks of no REM I enter psychosis. The glitter is a warning sign, and yet I miss it today. There is something stressful, besides PTSD and fireworks going off at odd hours. The last dream I had was a twisted nightmare however. Not only does the body use the dream state to process things our subconscious cannot quite grasp but dreams also are a relaxation period and some down time. By not dreaming I am not letting my brain rest and I reach burn out very quickly. That is another reason that I am taking time off, as much as I can. My brain is screaming with ideas and if I wrote even a third of them down I’d have my hands fall off from exhaustion.

I know it is a painful choice to curl away from creative outlets in the hope that I fall asleep from exhaustion or am satiated, but I know that is not the healthy one. I would rather fall asleep and dream instead of pushing myself until I am at the edge of collapse. I dream either way, eventually but with one there is the promise of nightmares and physical sickness, and with the choice I am making I may still have both but there is the chance I won’t have to have terror fueled dreams.

I used to have nightmares every time that I dreamed. In fact, it reached a point where I started altering my dreams consciously. I am not sure if the nights when I know I am asleep but am still thinking and imagining my stories, something to entertain me while I lay there for a few hours in boredom, or the skill to dream lucidly came first. I just know that when I talked about it I ended up in a mental hospital. That’s right, my mother and her army of brainwashers, I mean therapists… well they decided to try and control even what I dreamed. It wasn’t enough to alter me in the day, but they wanted to take away my nights.

I didn’t dream for almost a year because there were rules set on my dreams. I chose to not dream. If I started to dream I woke myself up. This is why I know I can run on no sleep. This is also why I know the symptoms of psychosis so well. That was the time when I was put on antipsychotics that toxified my body. I think those drugs gave me the water and sun allergies as they came at the same time, but there is no definitive there as I was also in puberty. My body was changing, and being violated even by FDA standards which are not as tight as they should be.

I sit here longing for dreams, when once I fled from them. I find this a bit odd. It feels a bit like a partial plot in a bad romance novel. My good dreams may qualify as nightmares for some people though. I like to fight in my dreams. I am the heroine, beaten, bloodied, and almost broken. The enemy thinks I am defeated then I find with in myself the power. It is sometimes more strenghth, sometimes a sword that I find laying on the ground, or a bit witchbladey one with in me, other times it is my companion (Sprite as a Dragon, who doesn’t love that?). Most often it is the power of my words.

My word power took over as the weapon of choice in my dreams some time after I turned 21. I stopped trying to just kill and destroy my enemies (Father mostly) and talked to them. I argued with the recordings and PTSD in the form of abject evil allegory (though I retain my disabilities despite the Sci Fi fantasy cliches). I won the arguments. Again and again. I chose to live at this time too. There is a direct correlation between my dreams and my unpacking of privilege as well.

So I want it. I want to dream. Even if it means sometimes I have nightmares, I dream. I never used to have the good dreams, where I was running from something, and turned to fight. I used to just die over and over because Daddy loves me. Those dreams await me due to the high PTSD risk right now, but I can take them on. If I can stop thinking long enough to dream, I can do anything.

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