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.

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

Not All Expectations Are Positive. (Trigger Warning)

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

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

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

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

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

4. Kittens need constant attention.

5. Kittens will bite, tear, and claw.

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

Truths about Nymph.

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

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

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

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

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

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

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

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

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

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

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

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

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

Adult Expectations for Kat

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

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

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

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

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

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

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

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

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

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

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

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

Blogging Against Disablism

I have restarted this post twice now. Part of it is my pain clouding my mind and a resistance to taking my pain meds. I have not shaken the habit of taking them only when I cannot stand the pain. This has left me fighting off a meanness that the pain brings up. I don’t even feel it at first, but, then I realize I am harboring a great deal of anger. Once I accept that I can take my pain and that it is alright to take the little pill that lets me do more than just deal with it, I can resume living.

I see this as my truest handicap. I am at risk of pushing people away because I fear being addicted to a drug. I am dependant on the morphine, but not addicted. The dependency is my need to actually have a life. I am starting a business, I am following my dreams which I had presumed dead and lost to me for years. I am also using my handicap to my advantage.

I listened to a speaker last night who came to the United States from China. She has not shed her accent, nor should she. In her speech she explained the prejudices she faces as a result of sounding foreign in the united states. This racism that she deals with overlaps ableism. People look at a disabled woman and see her as stupid, inferior. People hear her and presume she is stupid, inferior. They presume that neither set of people has the capability to do brilliant things. We are raised with this belief system. We are told even if not directly by our parents, by the world we live in which segregates the special children, or forces students to take English as a Second Language courses regardless of need based not on their actual language but on their race.

My most recent example of a person using my disability as an excuse to other me comes from the grocery store. I went in with my Person to pick up some items for a road trip, with a client. I must protect myself from allergens and that was the solution. Sprite was riding behind me, tucked under the sunshade, and hiding behind my body. A woman came up, I am leaving out a description of her because when I write it, I other her. That is not acceptable either. She tried to pet Sprite. I didn’t bother explaining anything to her, I said in a very soft voice, meant to be calm, “Please go away.” She exploded. “HOW DARE YOU!” She got in my face, and I dropped the softness, but stayed polite. “Please go away,” She snarled, “You aren’t doing anything and you shouldn’t have a pet in the store.” I replied. “Please go away. I am doing my shopping and I am not here to befriend you, talk about your pets, nor am I breaking any laws. I do not wish to discuss this matter with you and have been polite thus far, despite your yelling and harassment.” I then floored it, my chair whipping around the corner and continued my shopping. Ten minutes later I hear the sound of my Person being pushed. His grunt of pain reaches me just before this woman is in my face again, “YOU DON’T HAVE THE RIGHT TO BE RUDE TO ME!” That was when I stopped playing nice. I let myself snarl right back, though I did not yell, “Really? Assaulting someone who is not involved in our discussion is rude, trying to invade my space is rude, yelling at me is rude, and showing your own inability to grasp the rights of others is beyond rude. Get out of my way, I don’t really care what you want out of me I am not here for your enjoyment. If you bother me again I will call security.” She flounced away, and I finished my shopping.

As we left, the store manager who had the law explained to her as we entered was discussing the incident with this shopper. She had gone to the manager to have me thrown out. Instead she was told this, “I am sorry ma’am but you have no right to touch her, her wheelchair, or her service animal. The law protects her rights to shop here in saftey, as it does yours.” The woman replied , “She’s just a cripple, she doesn’t have any rights.” The manager was openly angry at this, which surprised me since she’d been a bit of a hard case about it all before. I left then, to the sound of, “She has just as many rights as you do, and if you continue to behave in this manner I will have to have you removed from my store.” The woman then threw herself on the ground and had a tantrum like a toddler.

I learned something from this, that was the point of sharing it. I learned that every person I edcuate becomes an asset. I did not feel this woman could be educated, nor did I feel prepred to try and spoon feed her the information. The burden of fuctioning with a disability is fighting for my rights. I use my disability as a tool to be under estimated. The woman underestimated the ability of not just myself but of others to actually see the humanity with in my body. She under estimated the ability of people to actually listen. I do at times too.

The secret to blogging against disablism? Is to do it whenever you write. The secret to teaching aout disablism? Is to live.

I know this post isn’t as wonderful as I wanted, I am still distracted and out of it. I am not feeling myself. I hope it does encapsulate an idea. By living and not giving up our dreams we fight ableism/disablism. By having lives we fight against disablism. I am partly distracted byt a disappointment with Obama and his failure to sign the Community Choice Act. I am disappointed with his inability to see the human rights that lie at the end of his pen. There is still time, but, his administration has openly stated that there is no reason for him to actually make the changes that free people from being forced into Nursing homes.

Beyond blogging against disablism, I call you to act. Go out into the world, be seen. Educate via your existence.

To read more about Blogging Against Disablism Day, please follow this link.

Treatment and the Day of Silence

I am not talking about medical treatment today. I am talking about the treatment that humans offer one another. This is the main reason I do not allow myself to cuss. I want to stop myself from hurting someone without thinking, and that is the most common use for curse words.

I have written a bit about my bullying experiences before, but today I want to talk with you about the Day of Silence and why I am taking part. I keep trying to fit all of this information on a double sided business card. I am preparing, my white board is ready, I am considering which form of tape to put over my lips. I am taping them closed on Friday, so that I do not accidentally babble. It happens. I think I am quiet and I have been talking for an hour about nonsense.

The Day of Silence, in my eyes, is an opportunity to educate those who have various privileges on the oppression that they do not see. I am an advocate for so many and I am advocating with my silence for any without a voice. The main focus is GBLT relations, but, I am adding to my silence the silence of those with a disability that takes their voice, those who are not heard when they speak out about abuse, and those who are not seen. I am taking part in the day of silence, and I call for you to do the same.

We who can speak out, especially with grace and eloquence, have a duty to protect those who have no voice. The world exists today where people who are marginalized are still being punished. A young man hung himself due to bullying. I do not use the word excessive before bullying as many do, because any bullying is excessive. If you excuse smaller amounts of bullying with that one word, you excuse it all.

If you read most of the blogs in my Blogroll, then you are most likely already aware of the Day of Silence. You are likely aware of Carl Joseph Walker-Hoove hanging himself at the age of 11. You might have seen his picture. If not. look into the face of battered innocence.

Carl Joseph Walker-Hoove age 11. He is wearing a football uniform, holding a helmet and smiling.

Carl Joseph Walker-Hoove age 11. He is wearing a football uniform, holding a helmet and smiling.

The antibullying action taken to protect this child was to force him to eat lunch with his abuser. That is as effective as the silence I faced when I was Burned at the Stake. His family is supporting the Day of Silence, as he was going to turn 12 this Friday. The Day of Silence is April 17th.

I look back at my life and see how close I came to suicide as well. I wanted to die so often, but I wasn’t able to make myself or someone stopped me. No one considered the ramifications for this boy. His death is criminal. Suicide? In a way it is murder. Every child who ridiculed him is guilty. They may be children but I honestly hope that they feel the guilt, that it eats at them enough to prevent the next act of bullying. I doubt it. The excuse that Children Are Cruel is not acceptable. No, children are not cruel. They are innocent. They are taught cruelty by the adults in their lives.

We are responsible. If you would not ordinarily take part in a protest, consider it as a way to honor every child who has been bullied because of skin color, hair color, eye color, behavioral difference, able bodied differences, or even for a difference that cannot be listed here. If you were bullied. Take part. If you bullied someone when you were a child. Take part.

This is a call to action. After I get my business cards ready, I will post the file here so you can download and print the minifliers. You can also find information on the day of silence website, they have resources and tools.

This is a way to advocate for yourself, for your children, for the children of the future, and for who you used to be. Stand up, stay silence, and be proud of it. If you are against the human rights of others, you probably aren’t reading this blog.

The Day of Silence Website: http://www.dayofsilence.org/

Speeches

I have promised a catalogue of my speeches. So far these are the files I have gotten uploaded to Youtube.The youtube account name is TextualFury. I know some of the videos are flawed, okay all of them are. Feel free to comment here or on youtube if you have any input.


This speech is titled “What is a Service Animal?” At the end of the speech a copy of both the Federal and State law was handed out, with my business card as I could not explain the entire law with in even three hours. You can see me stand, you can see Sprite the service cat in action too.

This is a speech that is meant to explain my wheelchair. It is called “Thirty Seconds.” The goal of this speech was to work on my gestures, something that I find more challenging since breaking my back. I had to work through a lot of pain to even write the speech. The physical portion wasn’t painful during this rendition, though developing each motion was.

This is the same speech as before with some rewrites. I am trying to focus it into an inspiration with a call to action just to think, to help others, and to hope. This is a better angle but the sound is out of sync.

Here is my Person giving an extemporaneous speech that is meant to last between one to two minutes. Now you know my secret, he’s talented, eloquent, and adorable.This is posted with Permission.

His question was, “What was your favorite TV show during your childhood?” His answer for those who cannot view the video, was MacGuyver. I am planning to transcribe the other videos, though this will take time and I have no idea if I will get to it soon at all.

One final video. This is just the beauty of the local campus. Soft, beautiful birdsong and bright green ivy. This was filmed after the second version of the Thirty Seconds speech and Paul’s tabletopics. It was just too beautiful to not film.

One persons Courage…

You hear about it in the news, inspirational articles, and in the whispers of people discussing someone’s life. Sometimes you hear it to your face. “You are so courageous.” I have been facing my fears lately and there has been some courage yet, most of what people tell me is courage is merely a will to live. Is the Will to Live what makes us couragous? Does this invalidate courage?

When I hear about someone being courageous, brave, or something along that line the picture in my mind is a bit gender normative and sexist. It’s a brave soldier in a black and white movie with bombs exploding behind him rescuing the little woman and running away from gunfire without breaking a sweat. I am well aware this is a very skewed image that remains in my mind. I use this image to invalidate my own experience often.

How can I be courageous? I just didn’t give up. I didn’t notice it until tonight. Giving the speech about my Thirty Seconds, I was reminded it is courageous to save a life. I found myself afraid of those words. Why fear courage? I think it is the responsibility to be something more than human that the media shows us courage is. Batman is couragous. He’s a super hero. I am just a small and broken woman at the end of her endurance trying to make it through every day.

I am trying to teach myself what courage can be, beyond the black and white John Wayne dreams. I am trying to teach myself that courage is simply living. Transgendered people who have the courage to go through the change, to live in the sex that fits their minds and not their bodies are courageous because it is their will to live. They can die for being who they are.

How terrifying it must be to have to pee in public. How terrifying it must be to go clothes shopping, to go out and feel that fear… what if someone figures out who they are and in their ridiculous hatred they attack? That is courage. It is also horribly sad that we live in a world where it is not a hate crime to attack a trans individual. I didn’t know that until recently, I thought that it was a hate crime. It should be. Living without a legal saftey net, living without basic human respect, and living without the ability to be accepted by any other minority (except for some of us who actually do care) takes courage. There are trans persons who are unable to live as they wish, because it is too dangerous.

It takes courage to live at all. It takes courage for the college student to go to her late night class, because she hears all the warnings about rape. It takes courage for the woman who was date raped to speak up, risking victim blaming and slut shaming. It takes courage for the teen mother to take pride in being a mother, bucking against the stereotypes about teen mothers. It takes courage for the disabled man to go up a flight of stairs on his hands and knees to see if his able bodied friends and family are alright after hearing a gunshot. He couldn’t escape if there was a killer. That is courage.

To revile the word courage is to revile the act of living. It takes courage for our students to go to school. We live in a world where the terror of school shootings is very real, where the hate that a disabled student feels can destroy their minds and their souls. We live in a world where there is no safe haven. It takes courage to raise a child with disabilities and to love them. It takes courage to admit that you are disabled.

It takes courage to say that you do not want to see a movie because it is full of sexism. It takes courage to be a Womanist. It takes courage to be a Feminist. It takes courage to be an advocate. It takes courage to write. It takes courage to cry. It takes courage to go out, knowing discrimination is waiting for you. It takes courage to date a person who is of another color. It takes courage to love someone who is of the same sex.

In a world as full of toxic messages, it is cowardly to defame courage. To hold the power to inspire one person is enough to change the world. To inspire countless thousands? That is a gift unparalleled. Forgive me for feeling that I was unworthy of the word courage.

I have been courageous. I am courageous to write about my time as a Victim. I am courageous to have ideas and to share them. I am courageous to start a business during a Depression.

You are courageous too. I am sure you can list ways you are courageous. I would like the comments on this post to be dedicated to your courage. What have you done that is courageous today?

Today my act of courage is to start planning the wedding ceremony for two young women in love. My acts of courage in life will include officiating their wedding ceremony. I do this with pride, and to honor their love and the courage it takes to stand up and proudly say, “I am Gay, I am Pagan, and I am in Love!”

Thank you for your life. Thank you for your courage.

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