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.

Burned at the Stake (Trigger Warning)

I was eight. My family had just moved from one small town in New Mexico, up to another. I want to name it, but, if I do it reveals too much about who I am. I keep my veil of safety. Being pale, with red hair and my own inhibitions in communication I was an outsider anywhere I went in this state. In small towns however, there is a generational acceptance and a strong xenophobia. That which is different isn’t just feared it is hated.

The children in this town were taught that red hair meant you were a witch. This lesson came along before I did. The further stigma of not being able to tan implied this further. I remember the attack, though it plays in half segments, like a badly edited movie and I feel like an outside viewer. I was on the swing, trying to kick the tree branch. Despite my fear of heights the Swing was as close to flying as I could get.

The other kids were calling me names again, chanting them at me, one threw a rock. The film skips. I must have fallen, my shoulder was out of place and my legs hurt. I was in a corner now, and I was quiet, I hadn’t learned to make them feel fear yet. They were new threats. The film skips. I hear the bible verses, half misquoted, none of them had actually read the bible they were just paraphrasing their parents.

“You’re weird.” Silence. “We should kill her.” Fear. “She’s a witch.” Confusion. “Thou Shalt’ not Supper a witch to live.” I did mock them back at that point, correcting their mistatement, “Suffer.” Fear. Suffering. I hurt. The teachers who watch and protect the students watched, they did not say a word.

I ran, I could feel the bones in my knees and ankles grinding, my hips hurt and crackled loudly. I could barely walk, a familiar feeling in daily life now. I cried too. No one wants to die. I thought if I died no one would protect my family. They laughed at my terror. I tugged on my teacher’s sleeve and begged, “They said they’ll kill me.”

“Go play.” The film skips. It’s the next recess. The sun is lower in the sky, and my body aches more. My shoulder is still out of place, but so is my elbow. The rope cuts into my skin. My lip is cut, my glasses are broken so their faces are just blurs. “Witch. Witch.” I feel the sticks under my feet, one of the boy scouts is rubbing sticks together to try and start a fire. I am being burned at the stake.

I did not cry then. I thought I was going to die. I closed my eyes, and I did nothing. I did not pray, I did not let myself feel. I just felt things. Mostly, I felt relief. I thought then I would never have to see my father again, or the older boy who had already found a new victim. I thought if I died my mother would be happy again. I thought the world would be a better place.

A sharp pain comes, and I start to cry. It’s not fire. They failed with fire and one of them threw a rock. The film skips. I cried, I knew I was bleeding and I knew too my guardians did not protect me. I had no teachers who cared, I gave up then. I gave up living in my heart. I had already been broken, I had already been beaten. This was just proof that the world was a place of pain and violence.

Proof no one could love a piece of trash like me.

Invalidation of a person. “She’s weird.” I did not scream, and I did not shout. I just waited to die. Why was it taking so long? Why couldn’t it end? Why did no one do a thing to stop them? Was I so very bad that I didn’t get to die? Was I so very bad that I was going to die?

The bell rang, and everyone else went to class. My teacher’s voice came as a snarl, “You will be counted as absent for the day.” She always looked away when the other children hit me, cornered me, and this time she had just watched. She looked away too when she caught one of the teachers raping another girl. This was the same. It all felt the same to me. No tragedy worse than the others, every breath was tragic and full of pain.

The third recess came, I hurt from the sun. “Whore.” I did not respond, I did not look up, I just stayed silent. “Slut.” More rocks came. One of them found a lighter, maybe a teacher gave it to them. The film skips, plays backwards, the insults the same, a chant of hate. The film skips forward. They have a stick that is burning. My ankles are covered with debris, rocks and sticks, a branch pulled from a tree. Dry tinder, dry grass. The lighter is set to the flames.

I wasn’t afraid anymore, I just watched the sticks burn, listening as they cheered. They were killing me, but, they were happy. I wondered if my mother would be angry at me for dying, or if she would be happy that there was one less mouth to feed. I could hear my father’s threats, I could feel his hands on me. Everyone said I was evil, so dying was right. One less bad person to ruin the world.

My feet hurt, but, I just stood there, tied to the tether ball pole. The principle suddenly was there, the film must have skipped again, but, I didn’t care. I just wanted to make them like me, so I would have to die. Then, maybe my mother could love me. I didn’t know she already did. I thought I was bad. I thought that every lie said was truth. I never heard the good, I don’t think it was said.

I heard yelling, I thought it was more hate. “How dare you just watch?” A knife was drawn, I thought the principle was going to kill me. I had been out in the sun all day, I hurt too much to think. The film skipped, he was carrying me inside. The teachers went back to work, watching. “Who did this?”

Silence.

Eventually I told him, all I could remember. I told him, and he cried. I thought that meant he knew I was evil. He called my mother, I don’t know if she answered but she did not come for me. My teacher kept her job, no one was punished. Only my body, my mind. He drove me home, he said he’d do something. I am sure he tried.

When I went back to school the next day, we started to read about the Salem Witch Trials. Everyone laughed about setting me on fire, about burning me. No one asked if I had blisters on my feet, if it hurt me to walk, or commented on the fact that I had blisters on my face. It was funny. The film skips.

It was all my fault, my mother said, if I just tried harder to get along. If I was nicer. The film skips. Years this time. In and out of the institutes I had already been, I was tired of it. Someone called me a witch, I fought back. I did not want to burn again.

The scars are hidden by other scars. No one was punished. No one cared enough. I was just a little girl, I wasn’t like them. I never will be. Over the years, I watched them as an outsider. I watched them live, I watched some of them die. None of illness, it was always stupid and preventable. I watched them age, I listened to their cruel words.

Every year, they reminded me about it, about the time they burned the witch. I still don’t know why it is funny. I was always threatened with a repeat performance, whenever I did not give them their way. My mother asked why I never had friends. Because I was the Witch. I took their mantle, I practiced the craft of hatred. I made them fear me.

I committed acts of violence, and I learned to hate. I never forgot that my siblings watched too, I never forgot that the teachers watched. There was real danger, there was no medical treatment for it. I had to walk to school until my feet healed, with burns. I had to feel the pain. I still feel some of it.

My sister found a half acceptance by selling her body for it. She let the boys do as they would with her. She let herself be their perpetual victim. It helped that she was born to be blonde, blondes cannot be witches you see. Their culture too taught them that the blonde women are the most desirable. My brother never found acceptance, he ran off as soon as he could, starting adult life far too early. Facing different pains than I.

My siblings who were born while we lived there still never quite fit. Generational Acceptance. Their great grandchildren just might fit in. I hope if they do, the town changes from violence and hate to love and acceptance. I never forgot who watched. I can still list the names. I know too, if my principal had not been sick, his age catching up with him and his body failing him slowly, they would not have just watched. He was a good man. One voice trying to teach them to love.

I never just watch. I will open my mouth at risk to my person, if it feels right. I will lift a hand to help someone if I can, or I will find a way to act. I never just watch. A part of me is forever burning, forever marred, and forever marked. I hear often that bullying is harmless. It isn’t. That was written off as bullying. I spent the rest of my educational career in terror for my life. It’s never just bullying. it is sheer and abject cruelty.

Is it just bullying to throw rocks at a person hoping to kill them? Is it just bullying to set someone on fire? Is it just bullying to blind them? Is it just bullying or is that the excuse given to make it alright to watch? What are you watching happen? What do you let someone do, that costs another?

Every word, every fist, every rock and the fire all took from me. Every adult who just watched is more guilty than the children, because the children did not know better. They only knew what they were taught. They were taught to persecute outsiders, to shun those who were different and to fear any slight varient. They were taught that god hates difference. They were taught hatred.

Not many people in that town grow up and function well outside of it. Part of it is the high density of criminals, hiding easily from the law. Part of it comes from the number of illegal immigrants. The lack of proper education, in a state that always falls in the bottom categories, this is the town that scores the lowest every time. The deficits that these children face disable them further than anything ever has me.

They burned me at the stake. I am struggling to forgive, but, when one of them ventures out of their town or when I must enter it’s borders I still feel sick and fearful.

They burned me at the stake. No amount of explanation or justification will ever make that alright. I may forgive them but I will never forget. I will not pity them, I will also not abandon them. If I am given the choice between watching or acting, I will act. I have to, I must rise above the actions of abuse, incest, torture, and pain. I must rise above. I must heal. I give myself this edict.

They burned me at the stake. There was no justice, there was no help, there was no relief, there was no escape. I had to face them. I had no safe place. I had no one to trust. I wasn’t just lonely, I was in a desolate place, beyond the reach of the rest of the world, wrapped in torture. Reality was worse than any horror story I could read. It was all just a nightmare, except that my nightmares ended eventually. I was beyond suicidal, I was beyond help, because no one offered help. I was blamed. I was a victim. I was nothing like who and what I am today.

They burned me at the stake. There is no forgiveness yet, but, I am trying. Each word written here is one word closer to forgiveness. I have forgiven myself for not being stronger, for being afraid, and for being a child. I have not forgiven them for their cruelty. I have not forgiven them for demanding kindness when they felt pain, for denying me my right to be a person. I am trying. If I can forgive them, then perhaps someday I can forgive my biological father.

I might never forgive them.

They burned me at the stake.

Selling the Magic Cure for Pain!

Right now, there are dozens of ads airing on a handful of stations in your area, perhaps every single one, schilling pain drugs. I tend to change the channel when these magic pills are advertised. Nothing cures pain, it just blocks the signals to the brain. “My Fibromyalgia pain has hampered my life, until I found this pill and became an above average American with no pain who can do it all, this pill turns you into Super cripple and has a musical name to boot! Try Elyricembril today.”

The expectation that these commercials set is unrealistic. I used to hold out hope that a pain pill would come along and take the ache out of my joints, or a pill would make it where my joints would stop dislocating. Tonight, I moved my pillow two inches and dislocated my right shoulder. Right then, a Lyrica commercial came on. I couldn’t change the channel, and saw a bunch of white privilege added in to boot. Not only is this woman schilling a drug, but, her family is all happy, has everything they need despite her invisible illness. There is no suffering all because of their magic little pill. This woman is blonde, thin, and has no needs beyond their pill.

The reality is so different. All these commercials do is add to the sense of defeat that a person with a disability faces. Those who are the hardest hit have no diagnosis, their bodies just fail. They do not get the luxury of knowing why. My list of medical labels is a luxury, I do take it for granted, but it is worse for those with no labels, no treatment, and often no job or home.

A part of me yearns for socialized medicine, with our government understanding the need for medical care for everyone. This would mean my caregiver would not have to ignore those aches and pains he feels daily, that to me indicate that there is likely a problem. As the depression that we are in, it is not a recession that is merely denial by wealthy men who fear the truth, gets worse so increases the amount of untreated medical ailments. Some include the diagnosed but many are ignoring small injuries tearing themselves apart and whispering in their minds, “When this recession ends, I’ll get a magic pill.”

There is no magic pill. There is nothing that takes away the pain. There is nothing that can cure you if you get sick enough. Sometimes you are just born sick. You do deserve medical care, but, turn off the commercials. The medicine that works best for many is not new, but is older medication ignored until nothing sold on TV, written on a pen, or advertised to doctors who are often paid to give out these pills works. There is no magic pill. There is no Truth in Advertising.

I might sound bitter, as I lay here writing. I feel pain in my body with every breath. I know there is no cure. There is no end for my pain. It has gotten worse through my life, each day it gets worse. I have tried everything, and usually once this is revealed my doctors give up. I have not given up. I am far from bitter. I am merely growling at a threat. The threat that kills hope, the threat that removes treatment, and the threat that further disables the mind. There is no magic pill.

If you are reading this, feeling alone, and need support. There is that. Not only are there support groups everywhere, but, you can contact me via my blog either in the form of a comment or using the contact form and I will talk with you. Friendship is free, and is often the best thing for those in pain. You aren’t alone. There may be no magic pill, but, that does not mean there is no hope. If you are reading this and have been feeling the ache of frustration, anger, or sorrow knowing someone else may see these advertisements and feel false hope then the crash that comes after, reach out. After all, if we save ourselves, support ourselves, or merely even convince a doctor to try something old, we win. There are many ways to lose, and the magic pill is one of them.

Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

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