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.

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Well Practiced Survival and the Art of Happiness (Potential PTSD Trigger Warning)

I hit a speed bump tonight. My brain splatted as I hit the mental pavement and I am sitting here stuck. The speed bump? Happiness. I am happy so it makes me sad. I keep thinking about why that is and I suspect it has something to do with the tenets of survival. I have well practiced fear, anger, sorrow but I have almost no experience with happiness. Happy was the fleeting moment that escaped so quickly and I held on to for years. I can name my happiest moments and its a very limited number. 1. Comic book convention last June, 2. Sprite and the first time I had a flashback and she was there, 3. Gothmas with M, 4. My first time being published.

That last one I had to struggle to pull through the mists of time and survival. I was thinking too about the domestic violence cycle and how cut off people are. I grew up without friends. Even now my friendships are limited. Some of that is the autism factor, I just struggle there but a lot of it is because I trust very few people. How can I trust you? You might be out to get me. I am working on this alone but I do not want to. I never wanted to do it all alone. I never wanted to have to figure out how to beat domestic violence by myself. It should not be about clawing my way up ever. Yet it has been.

I have been trying to find a therapist for five years. Since I escaped my exhusband. I thought I might not make it. Maybe I should settle for one of the quacks who try to lure me in with promises of touching me while praying but I do not think so. I don’t think my wanting to mock this person for being what I perceive as a predator on the vulnerable with their unproven techniques and faith healing is going to be a valuable moment in time. I still survived him alone. It was not even over then. It is just over. Does that make me now really a survivor?

Yes and No. I was a survivor all along but in a way not being afraid has opened up all of these memories and painful things. Its over so now I can process. I am thinking on things from when I was five, that I never considered before. My brain is just now allowing itself to sort through nearly thirty years of stuff. Not all of it is bad. Not all of it is abuse. Not all of it matters. Yet it is there burbling around. If I think of my friends instead of them I end up with my first day in Kindergarten at the age of four, walking in and being called weird before I said a word.

I think on the isolation that goes with abuse and I want to try new things to see if its actually my way or if it is a side effect. I grew up surviving and being too out cast and bullied for friends. Am I so alone now because I just never learned how or is it because I am afraid of my own friends? I don’t know. I do not feel fear when Ithink of each individual. I feel happy. Yet I worry.

I talked a lotof this out with a couple of my friends. I have had friends for seven years now, but it still amazes me when I can say that. One suggested a support group. I looked some time ago, I believe last year, but figured maybe I should. She went to bed and I began to google. I found many local support groups. Tons for folks with cancer, tons for things I do not understand such as video games, and yet for all of the domestic violence groups listed with the local news papers, online in google, and even with the various agencies that help you get out if you are not disabled the only groups are for the ABUSERS. Oh there was one for single parents. Not a one for women. There is one for soldiers with PTSD but I am not a soldier. There is one for everyone but me. I still wrote some down and may call but I already feel that is an intrusion. I do not fit by not having a child, by being a woman, by not being with my abuser now.

I am not at a point where I can just remedy this by going “Okay we meet here, come on ladies and lets survive more.” That is not what I can do right now. I did it before for another need. When I first was disabled I helped with creating a chronic disease support group. Then retreated from it because I was not ready. I will not make that mistake again. So I am left hanging between faith healers and the disabling abusers getting help and my own independence. It cannot just be a side effect of abuse or I would not have survived being alone but I am wondering why I am supposed to do this part by myself too.

I do not want to. I want the experience of people who do not get frightened by happiness. Or people who do but can tell me what the difference between estatic, joy and elation is. My brain cannot stop pressing on the happiness to see what is wrong with it. There is no room in my head for joy. I want to change that but I am lost out at sea without a compass or the north star. There are no maps. It is just silence and placid and gentle waves. I do not know how to be gentle. I do not know how to let go of the anger. I am still angry at my abusers but it is smaller every day. They are dead. I out lived them and can focus on doing more than just clawing through every day.

I am also very tired. I do not want to spend the rest of my life fighting alone to figure out if its okay to smile all the time. My face is sore. Its not the usual sore of the jaw dislocations Its my mouth. From smiling. I keep doing so for no reason. I keep laughing more and more. This is not just a side effect of the surviving either. This happiness started growing long before my exhusband died.  The sensations when I stop thinking or just feel are not the same. It is no longer a hard sandpaper or stabbing pain. It is not a pain at all. Nor is it really emptiness. It is soft and quiet there. The passions are still burning in me but they do not scream to be heard over my sorrow. It is simply quiet, and I have never had that either.

I never expected the thing that would make me cave in on asking for help with my PTSD and other struggles would be happiness. I suspected someday I might have a challenge bigger than I could face alone. This is not even true. It is just that I know I do not have to do it by myself and I do not want to.

I am a ship at sea, no port to call home. The current pulls me, so I go to roam. I am a ship at sea, the waves a song to me. Far from even the open road. The winds rise and my ship sails on, to new lands will I go? Tomorrow I may find land ahoy but tonight I am just adrift in the sea.

No Fear!

I have been struggling since my discovery that I am free of reasons to be afraid. Some of this is my consistent issue with the identification of emotions, which is not new and I found out is an actual diagnosable medical thing so I will be perusing. No idea if there are treatments or “trainings” to help identify feelings but it is good to know I am not alone on that. I found this out from an article about autism. The term is alexithymia. The discovery has helped me to cope with some of the not knowing. It removes it from “I am a sociopath aren’t I? Why don’t I ever know what I am feeling?” territory and puts it firmly in, “Well it is okay to not know” ville.

I am happy my exhusband can no longer harm me. It feels very good. I also have a spot of sad. Then comes these confusing emotions I have never felt before at all. It took me a little while to figure out why they were so confusing and then I realized, I have not ever had a chance to feel them. In my entire life I have not had one day, until now, where I did not have a reason to be afraid. I was born into a toxic wasteland of abuse and fear, and while I managed to not live that way as an adult most of the time I still had the fears of my family seeking me out for escaping. There was a very real fear until I was freed enough that they would harm me to force me to comply with their abuse and to make me go back to it. They tried, but I endured it and then came out the other side. There was also the fear that my father, the murdering sociopath, would decide one day to harm me. Being someone that he felt threatened him, especially in our adult encounters, was incredibly dangerous. I destroyed one of his marriages in a fit of rage at the age of 13 by telling the woman the truths I could make my mouth say of what he had done. When he did not deny it, she left him. I had never expected that because it was new to me, and he told me he would kill me. By the time he died I was married to the Ex. After surviving being caged and harmed, he continued to try and kill me. My brain has no idea what to do.

I am experimenting in ways to build on these good feelings or to even express them. The colors for good are still those dark jewel tones, blacks and the image is fire and air and water and earth all twisting up. Its a bit explosive, but it is not a bad explosion and I do not have the ability to paint it. Even writing this much I feel the torrent and my heart races, but it races differently from fear. I think it might be excitement. Its a good rush of adrenaline. I am doing things that get me closer and closer to restoring my life to where I had carved it into being before my Ex. Not entirely the same, it could never be as I am no longer that same person. I consider that a good thing however. I want some of the activities back, and I want to see in person some of the friends I feared he would harm. Little things at first, when I try to do more my health is hurting me some and then I am left to struggle with the energy drain of these strange emotions. I crept outside and sat there at night several times. Its not yet summer so mostly it is quiet though the sirens are getting more frequent and later at night. Still, I am outside. I am planning more than a month ahead for small things. Once my wheelchair is repaired I am going to the museum. Those things. Writing this blog is also one of them.

I am sitting here trying to formulate the words to explain things I have no way to, no experience for and the only words that fit are it is like a second childhood. I am reborn. I feel the urge to go running and playing. SO I am. Albeit slowly because my body is not nearly as energetic as a child’s. I have found that not having nightmares has actually disrupted my sleep because it is so new. Yet my sleep feels better. I am less exhausted even when I wake up startled by my dreams of sexy shirtless elvin firemen.

I feel like I can do anything, and I suspect some of the sad is in not having felt this before but despite those pockets of sad I feel… well I wish I could tell you. I feel as if I get not just a new chapter but an entirely new book. Book Two in the Series of Kateryna Fury, maybe three. My life is full of blank pages to fill with adventures and happy memories. So I will. I rebuilt myself to happiness and there is something like satin against bare skin about living without fear and knowing that I, with the help of very dear friends, made my life this good even with the fear. I have an awesome life. I have found too that this story which has haunted me for months and I have been working slowly on writing is no longer something I am afraid to write. It had no ending. It is a dark and somewhat frightening story but the ending exists now. I had not yet felt the things that I needed to in order to let the character feel them too. No fear.

It is strange to me that my brain reaches for things to be afraid of. It is seeking them out and trying to fill what feels abit like a void but none of those fears fit and my emotions kick that away before my logic does. I am working on trying to visualize happy things that might fit that spot. Is it a want? Is it a need? I have no way to know. Something about the unknown is frightening, but this unknown is a kaleidoscopic whirl of potential and I am going to start exploring.

Reasonable Fear (Trigger Warning)

I have been reminded in the last year a great deal that fear is never reasonable, except… I was wrong to tell myself this. Fear is most often quite reasonable and is a rather rational emotion. It is our reaction to fear that tends to be irrational. It is the flight or fight response that I have personally been taught to ignore. I didn’t put this together fully yet but I feel it.

I am very much in a bubble at times and in looking at places of California, trying to fathom living where there are more people in one town than in the entirety of my state I noticed the palm trees. My brain did it’s meta data response and I realized, Palm Trees have coconuts. My imagination made a three dimensional build up of a variety of coconut related cataclysms. These included death by coconut during earth quakes to random car accidents, and then they lost some sense of reality. So I asked if they grew coconuts, a logical question given that I wasn’t really sure about the biology of palm trees. I am still trying to resist the urge to read everything I can find about palm trees to stay my fears.

M my dear friend who lives beneath these Palm Trees of Doom assured me that they are sterile palms ordered specifically because of this. My mind now sees the city of Los Angeles as a fan of disabled palm trees, after all palms are generally used for food and that is how the trees reproduce. So, they are unable to fulfil most of their tree related daily living tasks. I am not sure why I went there in my brain but M being M assures me it is cute and he can see why this is a reasonable fear.

How could I avoid the trees? I am also afraid of fires and earth quakes and mudslides, all of which do occur in California. He has been through earthquakes without noticing them, something that I just cannot concieve of. Yet, my fear, despite the amusing mental images of Hollywood disaster movies with coconuts as the disaster and the myriad of things that could go wrong because of the coconuts, including them actually being bowling balls courtesy of the Flintstones and my allergies to coconuts are reasonable fears. They are in my mind because I either am vulnerable to them or I don’t know how to stop such things and everyone is vulnerable to the flaming coconuts being rained down from the firey palm trees.

I am also afraid to go somewhere expensive. I am looking at the cost of living and with housing, it isn’t worse. The food I need is less expensive, the housing is far nicer. I am just afraid of change in general. I have never really been anywhere with so many people. That and Venice appears to be a place where all the side walks are actually flat not standing on end or so broken up that you choose streets or sidewalks that end randomly with no way down and that’s if you are bipedal. I am afraid of going somewhere else, because I know that I will no longer be one of the smartest (okay that one may not be true) I will no longer seem worldly or cultured to the surrounding people, and their minds are open. Not just comparitively but despite a lot of flaws in general US citizens, California was the start of the independent living movement. I am effected by the actions of the open minded and willful who live and have lived there.

I am afraid of not being hungry, though literally I am full there are more options there for me to consume. There are more ways for me to be. There are things to do. I could go to a museum without it being dramatic. I am afraid of not being isolated by who I am anymore. I have never lived in any other place except this poverty driven world where all the bad things that happen to me are called fantasy. I am afraid that in this place so far from the evil I know, the evils I do not know are as bad or worse.

I am afraid of being so near the people I care about. What if I don’t meet their expectations? Distance has buffered them some of my horribleness. I am a great person but I am also capable of being cranky and raw. I am also able to hide a lot of my pain via distance. At least I think I do. That may be untrue which scares me too. M comments sometimes that every picture I have my eyes are full of things, secrets, pain, and the unspeakable things I have seen are there. He sees other things. He sees the softness I try to hide at all costs, he sees my hopes and dreams there, and he sees fear. He sees mostly heartbreak and he says strength.

I am afraid all of that will go away. I am also afraid that once I see the ocean I will stop yearning to stretch my wings and fly. All of these fears are reasonable. It is very reasonable for me to look at this life changing decision I have made that I keep remaking, and feel fear. Yet, why should I live somewhere that I am unhappy with just because somewhere looks expensive on the surface? The math is showing me that California is a valuable investment. The housing is better, the cities are cleaner in a physical sense albiet more polluted and populated, and instead of being near people I am terrified will find me who want me dead in plural as well as my mother who thinks she loves me but acts out of fear and hate…. I will be near a woman who is like a sister to me, my god children, and M.

M who I love so much that sometimes I cry out of fear of that love. M who didn’t let me give up. M who loves me too. I will be somewhere that I don’t have to hide every piece of myself when I go outside. I am afraid most of all of trying to live without the masks that New Mexico requires. It is ahborrent here, and I am terrified of this hope I feel when I think of living in California.

Yes it rains more there than it has in the last four years, yes it is sunny. It is not as hot as here, which is better and I have a theory that the rain being more than a rarity will make the disabling effects go away. Not the water allergy but, that’s what long sleeves are for. Plus, if I go to California, I can stop crying when I think about how much I want to be there. Even if the palm trees had grown coconuts. It would be worth it just to take the risk of being happy more than sad.

The only unreasonable fear is the fear denied, the fear that you let paralyze you into a mental, physical, or emotional death. Fear is a catalyst for change most often, it is the fear we treat as if it is an outsider that hurts us. So I embrace my fear today, and start to lay the plans into the great and wild unknown. I have taken on many burdens, and perhaps it is time to take on one that actually has benefits that I can see and account instead of guessing at the possibility of mere survival. Besides, I think Sprite would love the beach. She likes to roll in the sand here, and an endless swath of sand? She’d be in heaven.

Rogue Agent (Trigger Warning)

RageOMatic asked me a question on my last post that I had not been able to answer. I was trying to find the answer, and for the last week or so had thought on this daily. Tonight the answer hit me.

First here is the comment that he left:

How do I step out of the cycle on this one, Kat? If I start crying for all the abuse in the world, I’ll never stop crying again. (Ultimately, I think I don’t cry for the same reason you don’t scream…no compelling reason to stop.) How am I supposed to feel? What should I do? How do you need me, an able bodied, white male, to respond to you?

I think the most profound thing you have said to me, so far, is “I am a rogue agent in the cycle of abuse”. Abuse reshapes your soul to either be sheep or wolf, the abused or the abusee. My grandparents, my parents, my older brothers and sisters, all got the same “training” I did to avoid being harmed by being the harmer, but I stepped out of the cycle.

When I read about the pain you are in, emotional and physical, the wolf wakes up. I want to find the abusers and abuse them. You are not my only friend who carries scars on her body and soul from abuse. I want to find people, and choke them. I want to see in their eyes the look they have so frequently caused in others: the moment when one realizes no fight, no strategy, no inner strength, no god, no anything, will save one…only the whim of the abuser.

I know that’s wrong…so I push those thoughts away. Now I have to fight the sheep. the first thing the sheep mindset says is what you describe is only horrible if its true. If you are lying to get attention, then you become someone lying to get attention. That’s disturbing of course, not nearly so disturbing as the truth of what happened to you. It’s so much easier to believe a woman was only abused enough to lie about the abuse, and not so abused as to be accurately describing its toll on her. Then, the second part of the sheep mindset…well even those parts that are true aren’t that bad…because abuse makes you stronger!

And with a snap, I’ve minimalized your pain, and said you are lucky to have it. All three ways, I’m agreeing with the abuser: (1.) Abuse is a good way to motivate people. (2.) It’s the victims moral flaw and not the abuser’s. (3.) It’s good for victim anyway.

First I want to respond to this comment because this comment is so multilayered. Then I will explain how I was given the answer by M, my dear dear friend who often lights the way on my path when I am confused.

First, Abuse does not make you a sheep or a wolf but instead a victim or a predator. Often both. The Sheep and Wolf metaphor is a part of the mind playing into the lies we are told and sometimes tell ourselves to cope with abuse. It’s okay to just be a person, even if it means you are a person that has been hurt.

Stepping out of the cycle of violence is the most dangerous act a victim can make, and frankly I don’t believe that a person who has taken on the role of abuser can stop, because then they are letting go of a mispercieved “power”. This is an opinion I hope is wrong but it is based on my experiences and some of the challenges I faced when I tried to be the abuser. I did make that choice and those memories and choices are the few things in this life I actually and actively regret.

I understand wanting revenge. In fact, I will be upfront with you on this, if I ever meet my exhusband again I will kill him. If my father rises from the dead as a Zombie I am sure as hell going to take him out. If my Grandmother ever speaks to me again she will meet the wall of silence that I have decided is all she deserves from me. For her that is a fate worse than death. Revenge can be a great motivator for changing patterns. It can be the carrot, if I am alive, living well, this torments them.

Revenge can be a reason to not die. It has it’s purpose but revenge cannot be the only reason you live or you start to poison yourself. Eventually you have to find something past it. In fact my statements above are less about revenge and more about protecting myself. I am not going to seek out my exhusband, because that would be self abuse. I will defend myself and if he dies in the process which I beleive would be a necessity, then I am in the right. My father as a zombie? Off with his head. He’d be eating brains, so since I have one, again self defense. With my grandmother, this choice is difficult because I am aware it causes her pain. I decided that minimizing my pain and regret factor is worth her suffering, because in reality nothing I can say or do will stop her fear of dying alone and the cycle of abuse that follows when she realizes that someone may just want something from her, her other fears feeding into her personal cycle.

Another element to wanting to seek and destroy the abusers is two fold. 1. Having been a victim, it protects you from being victimized by them. 2. An element of this is wanting to protect other people. Neither of these things is actually bad, but when you are raised in a world where self preservation is something “sinful” and you are taught to fear it, you will lie to yourself about the why. I still do and have to actively catch myself and correct the thoughts. Knowing someone is hurting at the hands of others hurts because of the human collective. This is why I cry when I hear about bombings, murders, and child abuse. It hurts me emotionally.

In fact I believe that the factors I listed above actually are the cause of this current war in Iraq. The emotions of the people in my country were played with so that abusers could go and hurt people in the name of protection. 9-11 was actually around the time of my self awakening, and I believe that the abuses and lies by the US government played a part in this, because they were the same sort of lies my father told us about other people (specifically people of color or other minority factors).

I don’t think you want to see their pain so much as you want to prevent it, but I may be wrong. However, that was my personal truth, and it may take some digging through the layers of feeling masks to find out what your personal truth is. When feelings are forbidden, it is natural and “healthy” to put a mask on. It’s a survival instinct. It stops being healthy when the situation goes away. Some people perpetuate the abuse because they don’t know how to function without it. Some tell themselves they like or deserve it and seek it out. Then another set of Victims and Abusers come into play.

This is part of stopping the internal cycle that is hard. No one can see your thoughts but you. I had to retrain my reactions to people. On top of this I had to learn to deal with PTSD, and I had to learn things that I know now are basics for small children. No hitting. No biting. Sharing. I still am fairly awful at sharing. I wasn’t just developmentally delayed or socially delayed but my parents emotionally stunted my growth without thought of what this would do for me socially. Social skills are something abusers take away and I am still mastering some of them. (The Autism plays a part in this, but not as much of a part as most people think.)

What you call the sheep mindset is a response to programming. I always called it trying to eject the tapes, because I noticed for me the voices in my head were of my abusers. The lies that I told myself were mine, belonged to my parents. As Victims we first learn to minimize our own pain, and the post you questioned me on was an excercise in not minimizing things. I still did to a level and may someday write part two of that post but I am not there yet. Instead of punishing yourself for “Agreeing with the abuser” try relabeling things. When you think a thought you know is toxic tell yourself to stop and state the truth.

This is a method I think I found in one of my mother’s many self help books. Most of them to me were worthless but I remembered either reading or hearing about this method and it seemed reasonable. I don’t know what I read but what I did was carry around a small notebook, a tiny pen, and I would make a page for every day, then I would make a line for each bad thought I had to correct. The first day I used four of those tiny notebooks at least. Every thought I had was really repetition and regurgitation of abuse. I had to give myself a goal to do this because it is hard. So I told myself that once I went a week without having to correct myself I would get a soda from the school vending machine. Admittedly I had to steal the money to do it so it wasn’t a perfect scheme but it was a goal.

I then had to make the goal realistic and aimed that I would only use one page in a month. It took years. I actually left the school I was in before then, was sent away to a mental hospital, kicked out of that mental hospital, sent to an exclusive school for broken children (my mother’s words), and was allowed to return home before I managed it. That means it took me over two years.

I didn’t realize until last year when I was writing one of the many unpublished things I putter on that I had really taught myself how to think. The cycle of abuse works because we become afraid of thought itself. Thought shows on your face, it brings up those feelings that make the pain come, and so you must only think safe things. Add in an omnipotent being that has hated you from the womb, something you and I share, and you have no reason to actually think or learn or do anything but what you are programmed to do. This is brainwashing. Admitting that makes me want to cry a little, because it’s something else that I know falls into that spot where I want to dismiss it.

Your statement of steps is active abuse, even if you don’t share it and don’t act on it. I will state you are the victim and abuser when this is all in your head, because it hurts you. If I am unaware that you had these thoughts and even with the awareness I am not actually harmed or the harm is much less than what you have as you have then entered your own self hate and punishment cycle, if I am guessing correctly. I still do at times. I am practicing not giving in there, and though I no longer carry around a notebook I still have to stop myself at times. If I am alone sometimes I will shout at myself in the mirror, arguing with those tapes. sometimes seeing that I am really a person and not a valueless fleshpile makes it easier to stop them.

I also want you to keep in mind that the tapes are a part of what makes PTSD work, and I don;’t know if they can ever go away. You may sheer the sheep but wool grows. This is a life long goal and fight.

Now the truths about the lies that you asked about

1. Abuse has never motivated anyone. If anything that omnipresent sense of dread that is in all my memories up until my adulthood and sometimes thereafter made me want to not move, not breathe and live. Abuse is the best demotivator.

2. Sometimes the victims have yet to speak, this would mean that everything is morally bankrupt, and with good people in the world such as you, even when you don’t believe it or M who keeps me from forgetting I am a person on my worst days this cannot be true. There would not be cats like Sprite, there would not be disability benefits, and there would not be medicine if everything was flawed and evil.

3. If it were good for the victim it wouldn’t break people and have people die. This does not mean those victims were weak but instead that they just broke.

Stepping out of the cycle here is possible. I think this is the hardest part of the cycle of abuse. I had to learn to love myself. I could think for myself once I knew I deserved to do so. Not just that I deserved my thoughts but that my thoughts are things of beauty even if there is a bit of tragedy with in many of the experiences I have had.

You are supposed to feel as you feel. Feelings simply are. Anger is not a bad emotion if you do not weaponize it. Anger simply is. My favorite emotion is Joy, and even as I am writing this I feel joy, because by asking these questions you are freeing yourself. You may have to do so again and again but you are trying, and trying is the only way of doing there is. I think the reason I cannot cry is why I don’t scream, but there is a reason to stop. I am just not sure I would know how to do so. The reason to stop is because of life.

And on the last question you ask, respond to me as a person above all. For that is simply who I am. That is who you are too, so remember that. People are fallible, and you will have days when you cannot stop making tick marks, days when you lie about it to yourself and make less than you should, and days when you run out of paper. Then there will be days when you don’t think the toxic thoughts about your worth, and when you can see other people around you through your own eyes.

M helped me find the answers because we were talking about a Patsy Cline Song, and Jonah Hex. Jonah Hex is like us. He is the product of severe abuse and cruelty. He is trying to make the world better in his own way but he is actively stuck in his personal cycle, and has no help getting out because of the judgement of others that take a scar on his face as a sign of his internal wickedness. A scar made by abuse.

When I read Hex I listen to Country Music. The Patsy Cline Song A Church A courtroom and then Goodbye is for me a reference now to my wifetime. My marraige was short, but before it became bitter it was sweet. I really did and DO love my exhusband. I love the parts of him that were good, the parts he chose to throw away.

He tried to devalue me and instead showed me a part of the abuse I was still in. In my life the only nice things I let myself have were investments in the future, so that I could save money in the long term. So my computers are always expensive but they last a long time. (Five years is a looong time in technology and I can jury rig things for a lot longer with this one if I just don’t save anything to my main HDD.) In fact, I so rarely bought anything new for myself and then it was an item of need.

My nice new clothes he took away? I needed them because I had nothing to wear LITERALLY. I am actually about to go buy pants because I need them and again have almost none at all. My shiny new Batgirl statue is a symbol of my being deserving of want. I deserve to want things. Instead of that being a dreadful affliction, a sin, or something bad… it’s okay. I may not buy everything in the world but as with food deprivation, depriving myself of the things I desire causes me to binge.

I can throw away the sales ads from the stores now. I no longer have to try and fit new trash in with old. I am still working on unhoarding my home but it is clean, the only things on the floor are furniture, wheels from my wheelchair, and cat toys. There is no filth, no piles that I have to climb over, and even better? I don’t hate myself for wanting and for the things I have.

Furthermore I also have something for you and everyone that reads this my dear Rageomatic. Love.

Love is a constant. It is not a weapon. It is not harmful. The idea that love can hurt you is silly. Not everything that has been called love is actually love. If something is called love and it hurts, it is something else. Pain is not beneficial but is a warning of something harmful. It is a sensory antibody. I love. I love everything and everyone. I admit even to loving those that hurt me. Love itself does not mean you have to open the door, open yourself to more pain, but instead the love of yourself is why you can step away from the cycle, and why you are not alone.

When you can love yourself and admit it to yourself, you can give yourself permission for joy. Joy doesn’t fade either but sometimes other feelings occur but that makes the return of joy all the greater.

This is my gift to you, and to myself. Thank you for asking your questions.

Shaming the Survivor (Trigger Warning and Foul Language Warning)

It is everywhere, the societal shaming of people. I could title this victim shaming or victim blaming yet, there is an aspect to being a survivor beyond the aspects of being a victim. The part of me that is a survivor identifies with John McClain, it wants to die hard if it has to die at all. The part of me that identifies as a victim couldn’t fight hard enough to survive. Same coin, two sides. When I advocate I must be a survivor, the victim aspect is too fragile to risk exposing to the shame.

You may have already run into this, at least once in your life. Something happens to you, and instead of being happy that you are alive, someone you know or must deal with reacts with disgust that you had to do things to survive, things that hurt you or went against the grain of society. The person that defends herself against a violent man and hurts him is not lauded but is feared by the patriarchy. Society moves to shame the survivors, keep it hidden away, don’t talk about it. This aspect leaks into other things. Surviving rape is immediately putting yourself at risk of being accused of deserving it. Rape can be deadly, therefore, to live you must have given in slightly, this is the myth. You asked for it and enjoyed it or you would be dead right? Wrong.

There is overlap with victim blaming yet, I haven’t come across a discussion about shaming the survivor. In a country/culture that has fat shame, thin shame, skin color shame, hair shame, race shame, gender shame, sex shame… it is hard pressed to find anything that is not seen as shameful. Other things are never acknowledged. Perhaps it is in that the feminists who are able bodied or did not endure domestic violence or… (insert qualifier here) cannot put it into ideas. Perhaps it is that these same women who attempt to speak for everyone with a vagina but only if they were born that way and are able bodied and white… do just that. They exclude. Before I was disabled I felt excluded because I  have survived. I felt shamed for having questions and not having picked up books on the subject. My nascent moment of identifying with the feminists died the moment one of them shamed me. I remember the words, the tone, and the sting. The woman was old enough to be my mother, she was blond, tall, and pretty. The topic was how to raise awareness about domestic violence, which resonated with me. I asked this question: “What if we pooled some money or raised funding via grants to open a shelter that gives access to women who aren’t married?” I hadn’t been homeless as an adult yet, I hadn’t known I would be in a sinking boat. I went further, the room had fallen silent so I stood up. In that moment I was appearing as able bodied, straight, white, and pretty by the societal standards. “Most of the shelters in our city cater only to those with children, and there needs to be a place for everyone.” That was what they were preaching. I thought the idea would be great. The response instead was as follows.

“Women like us never use shelters, we don’t need them, because we won’t ever lose our jobs or our families.” In that moment, the words said in this acid tongued manner that curdled by gut, I sat down and wondered why they called themselves feminists and why they bothered trying. I was excluded by class, my clothes were fashionable but I was not in the class I appeared to be. I was excluded by experience. Obviously the woman who spoke had never been in need, and in that moment I was cut adrift from feminism. I tried many times to reconnect but, despite some correct things and other incorrect things I did not belong in their puzzle. The ideals fit, but the people did not. There was discussion of how to further how to protect, but never the action that would help lower class (financially and educationally) women. Instead there was a pandering aspect to their own able bodied white privilege.

It hurt. It left me feeling so alone in the world. Months later I was further away from their ideal woman, deserving of help. I began to advocate alone. I have only worked with someone else during my advocacy rarely, because I do not want to be shamed for my experiences and I have yet to find true intersectionality. Sometimes my methods for getting my voice heard horrify people. To me there is nothing wrong with being a bit loud, or refusing to move when the police order me to as long as it is legal for me to do so. I am a rebel with many causes, and I see it everywhere I turn with the larger groups, if I do not fit their expectation of survivor there is shame.

Thankfully advocacy groups are rarely seen from this angle, I know I have the benefit of being a social chameleon, and that cuts down on people accusing me of things, assuming the wrong thing, or I just don’t admit what they do not need to know. I should say didn’t, as, in the last few years I have stopped hiding the parts of me they won’t like. I lost allies, but they weren’t true allies as a result.

I haven’t been shamed for surviving in a long time, but I had put distance between what I had survived and the moments I was living in. I see in my head snapshots of myself through the ages of my life, the phases, and the moments. They tumble down, twisting around each other before they burn up into a cloud of white smoke and I am still me. I let myself grow distant from them, focusing on living. Living became the act of surviving and once again I am being forced to justify my reason for not letting myself be murdered.

I realized that it was an attempt to shame me with the insurance. This week I had to justify the assessment for the wheelchair again. The woman on the phone asked me what I did to damage my body. “I had an abusive caregiver, I was starved and my first chair was damaged. It also never fit my needs or worked properly before that.”

“Uh huh, well did that caregiver beat you because abuse is just not reason enough for us to approve this chair.”

I wanted to scream, curse, cry, and shout. Instead I took a breath and said. “I was starved, are you aware of the ramifications on the body caused by starvation? I had less than 750 calories a day. My body consumed it’s strength to not die. My internal will to live also came into play, when I had to escape said abuser, I had to move. The replacement caregiver was also abusive, so I had to clean the entire apartment myself, I had to lift boxes, and I had to do this or I would have nothing left of my life with no way to replace it. I had to do this with a wheelchair that was broken.”

“So this is a self inflicted injury.” She started to go on and I let myself snarl.

“So you want your clients to just die when the options are injury that further disables them or death?”

She was quiet, I felt my anger and I let it be. I am working on that, as I fear anger. Anger usually means violence. I just felt it. It was about ten seconds, she was obviously thinking.

“No, it was just… you should have asked for help or something!”

It was my fault, in this woman’s mind. I have met her before, she is like the woman who shamed me for having an idea, like the reporter who didn’t understand that the ADA protects her too, and I had the click. Society wants survivors to stay silent, or to take the blame. It’s the same aspect, but in t his case the blame is the act of living itself. It is all tied like a spiderweb to the same isms, over and over again.

“I did, many times over. I begged, I pleaded.” I described the murder kit to her, I described my efforts of cleaning, lifting, dragging, crawling. Then, I turned it towards money. “So, now that you know all that, let me add something else into the mix. The chair will cost you less than the surgery and ER visits needed when I crack my head open because I lost my balance trying to do it your way, check my records I recently went to the ER. That costs you once about as much as the chair. That visit was preventable with treatment. You can approve me or deny me, I know others also have a say but if it comes down to my life being worth less to you than the cost of the chair, I will cost you more because I won’t die. I am a survivor. I plan to live a very long time, and as angry as you are that some disabled person gets help from your taxes… that’s just too damned bad.”

I was told it is too expensive. I was told over and over it is too expensive. My right to the freedom to move is too expensive. Even if it means I might die. I am hoping that my words left HER feeling shame, and anyone who hears the recording of that call. She and her company should be ashamed that my living is less important to them than profiting off of the illnesses of people. The capitalistic nature of my country has caused illness to be comodified. I am not a commodity item to the insurance company but I am to the wheelchair company and in a nursing home my name would be beds. I will now always be poor, but I refuse to be known as cost burden, potential profit or beds.

My name is Kateryna Fury. If you think it is wrong for me to have fought and dug and clawed my way out of abuse more times than I can count, fuck you. You heard me. I am breaking my own personal rules. It makes me edgy mentally to do so, a bit nutty feeling but FUCK YOU. FUCK YOU FOR THINKING THAT IT IS BAD FOR ME TO LIVE. When you break, because everyone does eventually in some way, someone will shame you for not dying. I hope you think for a moment and realize that you did the same over and over again.You are the cause of the term Survivor’s guilt. No one should ever feel guilty for living. EVER. Even bad people have a right to life, maybe you and your epic hatred of all things with a pulse made the person you think is bad act in that manner. Maybe it is all your fault you FUCKER. FUCK YOU.

My name is Kateryna Fury. I am glad to know that you also have survived, that you have fought and clawed and dug your way out of abuse, that you are a survivor. If you are in the act of surviving, then know you are not alone. I am proud of you. Your living has value not just to you but to me. It is so wonderful you want to live. As you recover, remember, you are loved.

Being Suicidal (Trigger Warning)

Before I share my writing today I am giving a bit of a prologue. This is serious, and this post is a long time coming. My scooter is repared thanks to your support, and that is one of the better things. I have a full time caregiver who is fantastic, and I am working on getting better.I will write about the good stuff soon.

Please read more, I am covering this due to the serious trigger warning. I don’t do that often.

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