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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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

Jaw Dislocation and Lockdown

I feel a bit like I did the times I had survived a life attempt that was single use, the pain is everywhere. It started last night with a yaw, and when I closed my jaw I heard a deafening snap. My ears STILL hurt. One side of my jaw had dislocated. I tried to just reopen and adjust, as I’ve had minor versions of this before, it got worse. I cried. I panicked. Sprite couldn’t fix it and she made me take an anti inflammitory for swelling. She then tucked me into bed, well after I panicked and played LEGO Batman for five hours trying to not think so I would sleep. (That adds grogginess in there to my morning blah.)

My pill supply isn’t that diverse. I have my morphine, I have an older anti inflammatory that is a lot like Ibuprofen but more potent for my system, an allergy pill that was supposed to make me sleep but does make me breathe better, and periodically antibiotics for me to use if an infection is too big for my body. I try to never ever take the last one.

The morphine is for my constant pain. I did find a way to take it last night despite my jaw being unable to move. The anti inflammitory is explicitly NOT for daily use, because it can make me really sick, not where I feel it but where my liver and heart go and try and take a vacation. One pill as needed however has proven to avoid the palpitations and increase in liver function test worry.

That pill was a challenge to take. I had to find a way to get a pill that under normal circumstances my teeth scrape over into a nonexistant space. For anyone with Ehlers-Danlos or for some reason you DO dislocate your jaw (it really hurts, most of my dislocations just feel numb) the gap behind your molars is where you need to shove the pills. You work your fingers under the flap of skim between your lips (inside of your cheek) and feel along until you find the space. Yes, this hurts, and yes it’s okay to cry. In doing so you can also feel your jaw joint, and that can tell you how the dislocation is working. I also felt along the outside. My left jaw flange had snapped onto the inside instead of the outside of where it should be.

You can probably feel the difference through your cheeks as well. This morning, well nearly 1 o clock, Sprite woke me up and pushed on my face my jaw snapped down and went where it goes. It hurt. She then clung to me for a while and I made the effort to get up. I didn’t get to eat last night because I am not filtering liquids through my teeth if this can be fixed. I slept rather well, but my dreams were of circuses and pain. I was the cat woman, a feline human hybrid who’se sensuality and flexibility would tantalize your senses.

My entire body feels the effects of the jaw dislocation. My back hurts more because I couldn’t get food, I think that is the root cause. What is funny is, the change in diet until today has already been clearly a good one. I feel so good, and my pain meds are already starting to work instead of fighting through the crap in my system. Yay fat!

I realized something however as I am taking a bite of strawberry, my jaw clicking away. It always does that. When I go to the dentist (long over due) they always dislocate my jaw to fit their tools in. My mouth is small, my jaw is abnormal. I have to use the kid sized x ray sheets or they just don’t fit. Though my muscles are sore, this tiny opening really IS it.

This contributes to how little I eat. I don’t eat much, just a wad of meat and cheese, and some fruit every day. Each meal is about the size of my fist. I’d hazard a guess and say I eat about 1300 calories. I should do the math sometime. The reason the number is so low is because my body won’t move. It doesn’t need more fuel, and if it does then I eat more. In between meals I do graze on fruits, like right now to amp my system up while I consider the meat portion of my day I am eating strawberries. The packing is worth a laugh, it says limited edition. These are the last strawberries in the entire world.

I know another reason why vegetables aren’t compatible with my system. A lot of the foods I am allergic to require chewing rather than tearing. I am a carnivore with a fruit addiction. Cats eat grass, I eat berries. I tear the berries and swallow the chunks whole. I know from watching other people this is not how most eat. This is how my jaw works, I adapted. I don’t chew gum, I don’t eat chewy food. If it’s chewy for my entire life I have spat it back out. If in public I do so as discretely as I can (hello Napkin) but I won’t eat chewy food.

Some of my family may say I have chewed gum and I chew a bit, but I don’t do a hundred bites of mush, I do bite, if it’s too big, bite, and usually then swallow. I chewed gum as a kid and my entire face would swell up from the effort of holding my jaw up. I also don’t ever have my teeth perfectly closed, my jaw hangs more or less. I never noticed it before.

I admit, for a few moments I wondered if I was wrong about being up to date on my Tetanus shot, what with the cut and the fire and the exposure? This is my normal. I just regret that Sprite was upset and afraid after she fixed my jaw. I did consider going to the ER, but, I couldn’t get there without an ambulence nor could I get home after. I decided if I couldn’t eat this morning then I would go. Hurrah for spectacularly talented kitties with magic paws.

Someday I shall do a list of the many times Sprite has saved my life, It is long and every day pretty much there is something that could qualify. I don’t know what I would do without her. My ears are giving her a ringing endorsement.

On Bended Knee (Trigger Warning)

Something that I think most able bodied people take for granted is motion. After all they may get sore muscles the next day but, a little sleep and they have this thing called energy (huh? What’s that?) and their sore usually goes away. They may also need a massage or just secretly want an excuse for one.My body is not made for movement. From a professional dancer/ Model this seems a bit funny to say.

It sounds vain as hell but I was VERY good at the dancing I did. I also had to work at it twice as hard as those around me and started dancing tired. I thought this was normal. Being raised to never question the whys of things, I had just begun. After all if you ask why and are going to be forced into prostitution or homelessness or both? It’s just not worth it to question things. I remember my first audition. I am not a formally trained dancer. I watched people and mimicked. The person who watched us commented on my stiffness. I had to learn to relax my body and flow.

I never actually did this. I learned how to create the illusion of relaxation. For as long as I can remember relaxing causes intensive pain. I remember trying to not cry out, because tears meant my father would come and beat us until we couldn’t cry. The first memory that comes to mind is last night, my mental chronology is working backwards. So the last one is when I was three. I have my most clear childhood memories at three. Three predates the “worst” abuses and post dates a lot of trying to learn mobility and the basic survival skills of living with someone who wanted to murder you for existing.

I had been carrying something heavy, something no one else seemed to ache with when they did. The thought memories are vague pictures of milk jugs and boxes. I was so tired that the sun was still up and I could hear my siblings playing but I just needed to lay down. I crawled under the bed with my dog friend Muttlee and tried to get comfortable.

Why under the bed? If I was caught sleeping then I would be hurt worse. I remember the dog friend shifting and making room for my small body. She licked my face and I squeaked at her, as I still squeak at Sprite when I lay down on my bed and she wants attention or wants to help me feel better but I am in that realm of suffocating pain. They both back down and don’t leave me.

I take a deep breath, and it hurts. I lay flat, and stare at the underside of my mattress, the dimmed light of my small space comforting. I hadn’t been tortured with the wool blankets in summer in the closet yet. Small spaces were my friend because HE couldn’t find me. What strikes me most about this memory is I start trying to relax. I even remember why. My Aunt Nan had been talking to my mother about how important this Relax thing was and how it was a letting go.

I started at my toes and let the muscles go. By the time I got to my knees I was in tears. I didn’t stop. I relaxed all my muscles consciously. The little pains (okay really horrible bad pains) that I have felt my entire life upon laying down? This beat them. I screamed. The dog growled and bit me in fear. Even the dog knew to not make sounds. A part of me always believed she was taking the fall for me. My muscles unlaxed and I climbed out from under the bed bleeding, afraid, and aware that there was a precipice of pain that even my father could not inflict.

This lead to my first time running away, while toting a boulder. This lead to my ability to survive in some ways. Most of the memories I  have of torture, such as my punishment for screaming itself I remember thinking “This hurts and I want to cry but you can’t hurt me as badly as I can.” I didn’t know what it meant for a long time. The pain in the relaxation memory was so bad that it was pushed away. My subconscious never let it go and I didn’t try to relax again until I was a dancer and hurt so badly after working that I went for a massage.

I know torture first hand. A lot of the time people make jokes about torture, not necessarily in the Guantanimo Bay sort of way, but often yes. I have been waterboarded. Usually if the toilet wasn’t flushed my father would waterboard his own children. He was the one who didn’t flush it. One of us would eventually take credit, and there would be blood. Now a toilet that is not pristine can send me into panic where I feel like I am drowning.

I have had my toenails torn out. Flat nose pliers work better than needle nose for that. I may someday take a picture of my feet. My toes, if I am not standing, curl inward because of the years of infection and damage to the muscles. The pain  in my feet from dancing? It wasn’t real pain as far as I knew. Real pain was what daddy did.

Most of the scars I should have don’t show now that I avoid things that inflame or damage my skin. You can’t see the stab wounds. Most people when they see the strange little round scars don’t know those are bullet holes in my skin. When people joke about gangrene (I am not sure how that idea is funny) I usually tell them, “Uh that’s not funny. I’ve had gangrene four times.” The modern era of medicine saved my feet.

Oh I know pain. Right now the cold snow on this supposedly Spring day, or at least I think it is supposed to be Spring with a capitol S… the pain matches the moments when I pulled out my own toenails. You see, I thought that trimming my toenails was the same thing my father did.

This post is actually about motion however. All of these things have effected my ability to move. Disease, Disorder, Syndrome, Torture, Abuse, and mostly Pain. My pain is omnipresent. I have been in pain since birth. My pain effected my friendships, Schoolwork, and has effected every social interaction. In fact, my ability to walk would be greater if there wasn’t a pain issue.

The wheelchair assessment opened some cans of worms medically and mentally. The idea that I would use my feet when I can is no longer welcomed. I knew it was painful but the pain means don’t apparently. I have never really bent my knees except when dancing. In all my memories good and bad my knees don’t bend. My sister did and hers dislocated. My body is so much more flexible that in order to walk I tightened all my muscles and I heave my body forward pitching to one side.

Totter may be a word. I think of an object that is off balance on a table or something, it goes side to side before it either falls over or steadies itself again. It moves when it rocks. This is how I have walked for my entire life. The pain in my hips and their chronic dislocations has an answer. Walking. If you don’t use the joints properly they will be damaged.

I have little flicker memories, pictures with emotional impressions really, of learning to walk. Most of them come with terror. Anger. Rage. Pain. There it is again. Pain. I can hear my mother’s voice as she cries. “Come on, you can do it. Please walk? If you don’t walk soon he’ll hurt you.” This ignores that he already had hurt us both for years. Those same words can be put on many memories, my ability to talk was born out of terror, my ability to read chapter books like little women came at gun point. Basic milestones that I would probably have been more delayed on, I did them to survive.

I am left to wonder how any doctor could see me walk for my lifetime and not comment on it. Yes, when I was younger it was worse, then when I tried to blend in and during my time of Sports until the end of the Dancing phase I faked it  better, but if you only bend your knees when sitting or in bed because you are in the fetal position crying as you fold up like a rag doll… shouldn’t they notice?

I have been institutionalized, hospitalized, psychiatrized, and called the patient for so much of my life that sometimes that is the name I hear in my head. Why then is it a quest for a doctor to be attentive enough to take note that there is some greater wrong? Medicine cannot be something you treat like a retail job! Medicine must be treated like it is something where every moment can save a life.

I don’t hold my shoulders “right” either. I actually didn’t stand once for this physical therapy evaluation. I moved my legs while sitting and that was enough to startled this woman. Apparently people with my level of flexibility almost never learn to walk. My life time of shoes that even when the doctor’s cronies measure them they do not fit, my life time of aches that I thought everyone had until it was too late, my life time of falls, wobbling tiredness, and sheer frustration that I couldn’t be as fast as everyone else has answers.

Still, when every child I ever knew noticed I moved funny and I had nicknames from “The Robot” on to “Stiff Whore” on to “The Crunchbacked Hunchback”… when I was stigmatized and tormented until the moment of my first self awareness as Woman and often… so very often… after? Why the hell can a doctor not notice that I do not even bend my knees on their stupid tables. I have spent my life running, jumping, plieing, twisting, turning, walking, and shifting but never bending my knees without falling.

It actually takes a conscious thought to bend my knee even sitting. A part of this is life long and some is exaggerated by my spinal cord injury. It takes more than one try usually for the signals to get from my brain to my legs. Then it takes several tries for my body to make the movement happen. It’s a process. It has always taken more time for me to get my leg to go forward. I have to consciously imagine it.

The first time I made snow angels that I can recall, not the actual first time as there are flickers and age disparities in the collage of memory but the first time I think I wanted to do so was also the first time my body was good for something because of the stiffness. I had to walk to school in the snow. It was a snow delay, and I actually never made it there. Another random moment with a random stranger who by the standards of my family I guess I should have feared?

I had sat down on a rock outside some house and was crying because I hurt and had fallen. The trashman stopped. I wish I remembered his name. I asked, I didn’t call him the trashman but the memory is buried under so much rubble. This was the first time I was allowed out alone after my first time in an institution and I was screwing it up. I told him so. He didn’t react like I was a monster. My own mother has just begun to treat me as a person.

This man was a mexican. From Mexico. He and I talked about how his father and mother had brought him illegally across the border when he was a small child. He had legally applied for citizenship as an adult was was proud of it. His first winter, they had made snow angels to celebrate. They were too poor for anything else. He asked if I could make one and I burst into tears again, “I always screw them up.”

He asked how. I couldn’t make a snow angel without smudging the wings or body or leaving foot prints. He laughed, not at me but the laugh of an adult who cares. I don’t know why he cared. “See that big pile of snow? Go make a snow angel, I will help you get up without ruining it. At first I was crying while making the snow angel. The snow made it’s crunching sound, I made mine. He made a face when I did. My knees crunched, my hips popped, my shoulders ground. It didn’t hurt, it was just the sounds of motion. He asked if I was okay each time. I thought he was insane.

When my angel was satisfactorily angel like he said, “Bend your knees.” I did, then he said get up. I didn’t. I couldn’t. Instead of yelling at me, as I already expected he pondered the situation and said, “You know the problem with your angel is … where are her feet? Angels have feet and legs right?”So I put my legs out and rolled up until I had my feet. He helped me balance. I hopped away from the angel and my angel was perfect in my eyes. “For you, the perfect angel is going to always be the most unique.”

He had to get back to work, and I spent the rest of the day making snow angels. I have thought of that moment often, usually when winter induces pain levels that make me squeak and cry with every movement of my arms and hands. I am squeaking a lot right now. It stands out as one of those memories where adaptation occurred or I was treated as a person. Those were so very rare until I was 21. At the age of 21 I began to pursue what I wanted.

My dancing career was short. A year at most. I remember always worrying about making it through the next audition. Would I be strong enough? I remember throwing up from pain. I remember too just how cut throat the world of Dance can be. I don’t dance in my wheelchair. I can, I think, but I no longer need to dance. I need to simply allow my body the stillness it requires.

I will think about every time I have bent my knees, I have them bent right now, because this keeps me from falling off of my chair. I will think on every footstep and the pain. A part of me is angry at my mother over this. That part of me needs to heal. A part of me is afraid. A part of me rages at a dead man. Mostly however, I feel relief. I am never going to have to do the basic things that my ability level has never matched. I don’t know how I blended as a dancer, and perhaps it was my unique style that let me work. I am never going to be able to walk normally and it turns out, it was unlikely I ever could walk from the moment of birth. My disability has always been here, now I just need to learn to respect my body and what it needs.

The Institute and the Adult (Trigger Warning)

I just wanted it to be in my head. I realized after losing a caregiver because the caregiver broke down mentally that I wanted the problem to be me. I was crying, struggling with the feelings that come with being vulnerable and endangered, struggling to get food, and the pain that comes with moving my body in ways it cannot really handle. I wanted it to be in my head.

If all the problems were in my head and were not real my life could be as it once was. For a moment I had everything, I had love, happiness, my health was improving for the first time and then… it was snatched away. I was starting to feel whole again. Then, I was snatched once more back from the brink of success. Even personally success in this world is a struggle for most people. The minority that masquerades as a majority has made it this way. I just wanted to go back to that place, I imagined it all.

Some of this comes from how much easier it seemed on the surface when all my disabilities were fragments of my mind, that nothing was really wrong with me. I just had to stop making it up. I just had to get a better grasp on reality. As I think in music and color rather than words, the thoughts surrounding that are truly discordant violin notes, the colors brackish. It’s a sensation of mocking. That life was a mockery of life. I was ill, and as long as it was in my head there was no hope of recovery.

If the issues with a caregiver turning violent were just in my head, then, I would still be in danger. That urge to put it all in a neat little package is dangerous. It’s a form of denial, though this denial is socially acceptable. It stems from my being medicalized at a young age. Nothing can just be, it must either have a cure or be a figment of my deluded little mind. Delusion can be comforting. Delusion means that there is nothing I can do about it but stop thinking. Reality requires action.

I am tired of action! I am still haunted by the sensations of my day. That prickling fear as I heard the first crash. I let it go on for a half an hour before I confirmed it. I let myself think it was just me being “jumpy.” Jumpy is code for triggered. I couldn’t ignore it when Sprite began to scream. Sprite, even when she signals things to me is a very quite service cat. She tends to use her paws and a soft flittery meow or a purr instead of a yowl. She yowled. The sounds in the other room were growing louder.

I had to choose. Do I risk my safety and my service animal’s saftey in order to retain this idea that every time I am afraid I am just being delusional? How many times did I do that with my ex-husband before I accepted that he was hurting me? I can’t be sure. However, today I didn’t let it get past once. I had to give up my delusions. I chose life.

Life is never easy. I suspect the main reason that the temporarily able bodied among us want our lives to be inspiring is they cannot concieve of happiness with a disability, as most of them are not happy. They spend their existance toiling for the gain of others. This is less so in countries outside of the US but, it is still a blatant reality. Some of these persons may also be in that same delusion about their ability, or other issues such as sexuality and gender. They waste their reality on delusion.

Since I became aware that therapists are not all knowing, and that my Mother has been desperatly wrong, I have faced delusion many times. Still it can over ride my own instinct to surive. I sit here in a room with the acrid odor of cleaning products, something that is avoided when they are used properly. The antisceptic odor makes me feel almost as if the institution is right there. That is the entire core of it.

If the issue is in my head, then I am outwardly safe. If it is in my head I can handle it. I can control it. If it is real, and no one believes me, I am at risk of being locked up. The core of my terror in speaking out today was in losing my freedoms, because a caregiver has more power than I do. After the agency head Robert spoke with my now ex caregiver today, he confirmed that she admitted she was over reacting to the situation. I don’t know what her future holds, but, I worry for her. I worry too, for anyone in danger that will stay there for fear of the instutition.

Some of the people who come across these words will state, “It can’t be that bad.” I still have nightmares, usually around the times when I have to fight the hardest for my right to merely breathe about the institutions. The place I was was actually not that bad compaired to many. Still all the labels thrown at me, the drugs that made my brain numb and my body bleed? Those were terrifying too. The threats that I would have electroshock therapy used on me if I didn’t behave a bit better. The behaviors that they threatened? Those all consisted of things like avoiding things that made my stomach hurt at lunch, having trouble sleeping, and having nightmares.

Some of the staff were wonderful. I remember their faces in flashes, and the comfort they brought. I remember the coldness of the beds, the tiny windows with bars, and the high fences where the only bit of reality I could see was the top of the bank building where my Aunt worked as a lawyer’s assistant. I remember more the cold showers, being watched. Not being allowed to pee without being watched. I remember the male staff with those. It was never female staff.

I remember the mean staff the most. I had to think hard to survive around them. Some locked me in isolation for tripping. Some punished me for not knowing a new rule that no one had bothered to announce. One in particular made fun of me for gaining weight when I started to eat again, after being a small child with an eating disorder. I managed to conform so they wouldn’t drug me by force. I took all the pills, even the ones that made me sick and lose time. I did my best.

I remember each tour of every facility. Once my mother was gone we got a second tour. We were shown the isolation room, the one with the bed and straps. We were shown their needles. We were told added rules. There of course are always the secrets and ways that a kind person in there may share on how to survive. Each place had it’s special etiquette. Yet always, in each one I was watched while bathing.

There was the one place that is technically an institution that I do not count as such. This is the only place that helped me. The difference there is I wasn’t treated like a waste of flesh but I was a person with needs, responsibilities, and the ability to help someone else.

It is thoughts of the institutions that hurt me that I think of when I must tell someone in authority a truth they dislike. It is threats of such places that keep me struggling to be somehow better than my reality. It is a terror that comes with knowing that as an adult the institutions are forever, and they are far worse than any I had as a child.

It is with that in mind that I wanted my fear to be something caused by a personal insanity. If that is the case, then I never have to speak up. I never have to say a word. I never have to fight. I don’t have to find a way to call for help. I can just mourn the loss of supposed sanity and keep trying to live on the “outside”.

The last place I left, I was told I would be locked up again with in five years. I was told I could never function as an adult in society, that I was hopeless. This was said by a therapist. This was the one institution that helped me. My mistake, the thing that earned me this ruling was telling the therapist, “I don’t think all my pain is somatic and I think it’s okay for me to be afraid I will fail.” My mistake was in believing that something was not a mental health concern, and in believing that I merit feeling what I feel.

I almost was not let free based on that conversation. This was also one of the better therapists of my childhood. Today, I declare myself free. None of it has been in my head. None of it will be. If something is in my head as a fear related to post traumas, depression, it does not mean I have to live in a cage. I promise myself now that I will not exchange freedom for a lie because I risk being caged. I am caged by those lies more effectively.

The Chronic Life Style

When you live with one or two or even more chronic illnesses your life changes. You lose something. Life becomes medicalized. You are removed from society, even if society doesn’t see it. Some conditions are blatantly obvious, but others may be hidden by clothing, misinformation, or even great efforts by the patient. You become a patient. Likely you also lose patience with the practice of medicine. Depending on the rarity of your disease or diseases you rapidly eschew laymen’s terms, having to research so that you can teach your doctor about the latest treatments.

It may feel like you should give up on doctors, but you may need medicine in order to have any sort of quality of life. Painful procedures including biopsies may become a regular requirement for treatment. You will have a team of doctors, none of whom communicate with one another. The coordination of this team depends on you. Most doctors will try treatments that do not corelate, and many will eventually give up on you. They want to treat you with a cookie cutter treatment, though for most rare conditions these do not exist because the pharmacutical company cannot make enough money and doesn’t really care if you are in pain.

You spend most of your life in a waiting room, and once you have a doctor in a room with you there is often a fight to get them to listen to you. Eventually, you learn how to make them listen, though this comes with practice. You are known by your first name by a pharmacist if they care. You learn to count your painmeds at the counter if they don’t. Sometimes they pretend to care just to steal your medicine.

Your doctors all want you to take dozens of pills, and often put you at risk for an overdose if you do not know why you are taking other things or their side effects. This burden can be very heavy if the pain is effecting your cognitive function. Some doctors will ignore what you want, they will ignore your chart and may prescribe drugs that you are allergic to. They then get offended when you point out that the medication will harm you. You don’t matter to these doctors and they are often specialists. You learn soon too, that you want a doctor freshly out of med school, because they are open minded and are often the ones who remember the names of rare diseases, but you want the experience of a doctor who has been at this for years.

There is no option for both, you can either have inexperience and passion or the doctor who has been dulled by years in the system. If you go to a hospital with even one medical student you will be shown off like a side show freak, because you are rare and fascinating. They will prod you, even if your condition has nothing to do with your visit. If you have an ear ache, they will still want you to flex your joints or to poke your skin to see it’s odd reactions. They all want to interview you or treat you so that they can write a paper on your condition. None of them keep in mind the humiliation that some of their questions can cause. Some doctors do not ask permission before telling these students about you, violating your HIPPA rights.

At other hospitals the internists may be in the same position as medical students, though they are much rarer. Often the internists will arrive and will ask permission. The curiosity still gleams in their eyes but they are not going to ask the questions with as much bluntness, a sign of mental maturation. Still, even if you are a small child, you forget to have a childhood. Doctor’s don’t really seem to understand that you lose your personal life.

The condition may have treatments, but many of them might be surgical. You could have a few conditions that cancel out the treatment options of others. The horrible sensation of turning into a grotesque monster may hit you. At this point, or even before, many with Chronic conditions turn to thoughts of suicide. Some even commit suicide, abandoning their families and lives. Some choose this route because they were abandoned instead. All Chronic Illnesses come with a side risk of severe and Chronic depression.

You might start laughing at every new diagnosis. You might hear the words “rare” or “genetic” and burst into giggles. They aren’t sounds of joy but it is really a mask for your horror. Each diagnosis has the same grief process. Sometimes you may be able to skip denial but you can never skip over the tears that you cry when you are alone. Even when you have a support system, they can’t always help you to feel better.

As your condition progresses you forget to do things such as buying groceries, or you have to choose between the medication that is vital to you and your pain medication. Many people with chronic conditions are looked down on if they need a handicapped space to make it through their shopping. Some careen through the store in a rush trying to get everything done before the pain overwhelms them, or the fatigue. Others use a motor cart provided by the store, praying that some little old lady doesn’t see them. They might feel guilt the first few times, but the ability to buy groceries with diminished pain is such a huge relief that they continue to use the carts.

At this point some continue to work, though others may lose their jobs. Not only are most people with Chronic conditions, even those which are supposedly pain free, fighting depression but the treatments may cost them their ability to work. If, as with Hidradenitis Supprativa, there is no treatment beyond surgery the patient will likely wait until the condition has debilitated them completely depriving them of their livelihoods. Some of these conditions are listed in the government’s database of conditions which need expeditious approval for a Disability claim.

Due to the listing in the Disability Database, the patient may run across a person who desires their disease or at least the diagnosis. This can be in the waiting room of the doctor, in line at the Social Security Administration Office, and even online, when seeking information and hope. This can often prevent a patient from seeing this doctor again. The patient might notify their doctor or the receptionist about the conversation. Instead they likely are too ashamed by what they have heard. Usually the person who has stated they desire this horrible condition believes it is truly painless, and considers it the easy way out. They are unaware of the detrimnetal effect that their words might have.

The patient with disability still faces the cyclic visitations to a doctor that the patient who has retained work or has made the choice to try and deny the need for Disability Benefits does. No chronic patient is exempt, though there may be enough relief from their condition to give them the sense of remission. Sadly due to the Chronic nature of any Chronic condition, there is no truth to this and they face the risk of a deepening depression or the onset of depression depending on their personality.

It is recommended by most physicians that patients seek therapy, although the psychiatric community eschews supporting most pain patients, preferring to tell them that their condition is in their head. The patient likely has spent years fighting for a diagnosis and will often have trouble with the notion of seeing a therapist again due to the traumatic treatment recieved before. This is not universal, though it is more common than a happy history with a therapist. This does not mean that therapy is not a good choice, as the state of mind can effect the reception of treatment by a medical physician.

Many patients will seek a support group before seeking out a therapist. With the advent of the Internet there has been an upsurge in email groups. Some patients may struggle with finding a group where they “mesh”. This struggle can be due to race, religion, or even prejudice faced against certain conditions. The rampant discrimination with in the chronic illness community can at times push people back into the mental distress mentioned previously. Many support groups try to modify the twelve step system or insist on a certain religious belief. Some members of support groups may be religious centric, focusing on prayer. Not every chronic patient wants to pray constantly. Many have had crisis of religion and are also seeking out their beliefs. This means that the religious patients who have turned to god may agitate their mental stress further.

This does not mean that any of these groups should disband, it merely means that a further support structure must be created and maintained by the patient. The patient has at this point forgotten that they can be more than a last name in a waiting room, or a first name if their last name is moderately difficult to pronounce. The patient may have had multiple personal crisis, and many years may have passed. Each patient progresses through various points in this article, and perhaps all of them. Some may be exceedingly lucky and find the perfect doctor, therapist, and have the perfect family who supports them unconditionally. These patients are rare. They also live with Unicorns.

Depending on the condition and the level of gore that the patient faces romantic interludes might be impinged. It may become difficult to hold their children, or to touch their pets. Fear may also be an issue with the patient’s spouse. Sadly, many chronic pain patients face marital crisis though a significant number of these crisis actually strengthen the relationships. Chronic Illness does not preclude the patient from desiring romance, love, or affection despite the potential for an increased level of anger as a side effect for the pain. The patient might begin to display outbursts of rage, instead of depression. They may also seem to mirror the bipolar patient (if this is not their chronic condition) with Mood Swings.

Some of these emotional reactions are the natural response to the brain altering it’s function to try and work around chronic pain. Others may be a response or side effect to treatment. Some medications excaserbate depression, others may mask the symptoms but only for short periods of time. The end of the masking period will be followed by a worsening of the condition.

With patients who have only surgery as an option there is the risk of being scammed by snake oil salesmen, untrained herbalists, and finks. A patient must research every medication, doctor, and treatment. It has become the patient who knows more than the doctor.

In order to return to being a person instead of the patient, a patient may tell their doctor to sod off. This is otherwise known as firing the incompetent buffoon. This is not always effective, as the medicalization of their humanity may have progressed rapidly and with great depth. The patient has found that resistance is futile. It appears that the Chronic Life Style is much like that of the Borg, as the patient has lost personal identity with in their medical file, beyond DNA evidence. The patient has discovered the medical hive mind, and thus their own knowledge has given them the ability to connect to it.

Published By Dr. Sarc A. Sim in the American Muddicle Association Joynal.

Author’s Note:

This was my attempt to try and vent. I spent last night trying to find out if I needed surgery for a very painful abscess that stayed hidden in my flesh for a good while. The cavernous hole was larger than a baseball, and showed up only as a small spot. The current treatment prescribed was oral antibiotics, which I stopped this morning. They made my stomach hurt and effected my reactions to the sun too much to continue.

The incompetent dermatologist I wrote about before prescribed this and a topical antibiotic that I used last night. I am now being forced to choose between improvement in the skin itself with the sensation of being burned alive or a faster progression of this illness that has no real treatment besides surgery and skin grafts. I haven’t decided yet. I am not sure I can handle that much pain.

I also am trying to get over the feeling of being alone. I wrote before about my rejection of mainstream religion, and all of the HS groups I could find last night seemed to talk about how prayer is the only treatment. This left me feeling as if I should just go to sleep and never wake up. This is a step away from suicidal thoughts for me, but is very close. The urge to give up is universal, with any challenge.

The final nail in my emotional coffin was seeing pictures of the treatment for HS. My skin is unable to hold a stitch, which means that where someone else could have the skin literally cut out completely and grafted over I could not. I did determine, as my doctor never knows and I have yet to find a Dermatologist willing to treat me more than once that I likely do not need surgery as long as I drain the abscess hourly. I am doing this and the wound is already shrunk down to the size of a golf ball.

I know I have support here, and someone else who is reading this probably found out they aren’t alone. I am considering doing something that feels drastic. I am considering building a website to host an email support group, a forum to discuss medical things, and a place to discuss non medical things. This would be a place to congregate. There would be a selection for those with the need to talk about their religious choices, but it would be seperate from the main support group as those persons are more likely to find a support group that fits them. I hope that it is clear that I am not judging anyone based on their religious choices with this, yet I want to make a place where you do not have to be religious, of the same religion, or can be an athiest without being judged.

I dislike reading about how once someone started praying, eating parsley, and did penance they realized they are marked as a sinner and that is the end cause. Yes, this is an extreme form of self belief, yet with the more untreatable conditions, of which I have many, that this form of extremism is more prevalent. I believe that some persons who happen to believe in the more widely accepted religions just as the less widely accepted religions may go to extremes but the main groups do not.

I feel that this all needed explanation as some people may be offended by my words, and that is the last thing I want. However, I needed to vent my emotions in order to subvert the depression that is trying to take over my mind.

If you would be willing to help create a system as described, please either use the contact form and drop me a line or post in the comments section. I cannot do it alone, and I do not have enough time to make this a reality at this time. This of course is logical as any group needs more than one person. I am looking at the Yahoo Groups System, as well as some of the free services for a website.

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.

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