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

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The Good The Bad and the Medical Drama

(This is the third time, my internet ate this twice now)
ahhahahaaa Woh woh woh… (theme to the Good the Bad and the Ugly)

Woh woh woh woh….

For those of you who have either never heard this before or just want to hear this while reading here is a video. For the hearing impaired the them is pretty much what I wrote above.

Today I saw the gynecologist about the font of blood issue and the discussion was as I expected. Though to get there I had to nagivate the world and I woke up feeling a bit fired up. I was going to make them see me even if they tried to screw up. I was prepared. So I donned my hat, today’s selection is my black riverboat gambler hat (the bad guy’s hats in every western or gambling movie) I put on make up so I could try and feel at least a little okay, a barrier between all the crap and myself, and went out. I had to take the sunshade off because the transport vans are too short for it, so I was hiding under the hat and sleeves. The ride was okay but the driver was obnoxious, though I enjoyed making him squirm with my honest answers to his invasive questions including, “Oh crap was that rude of me?” I also explained the ADA to him in detail and by the end of the half an hour journey he was very quiet and thanked me for not being mean about his questions. I shouldn’t have enjoyed that as much as I did but I was being straight forward and honest. He did ask me if I thought all technology exists because of disability and I said at least most of the things he takes for granted such as automatic doors and some things on his computer do.

I went into the hospital and popped into the elevator, went up and was immediately surprised that they had renovated the floor plan. So, I turn around and there’s a receptionist waiting to answer my questions. She is here as her first day and doesn’t know where I am going but goes to ask, returns and leads me as far as she can, I read the sign on the door about an alarm and go to back track but a tech saw me and was surprised I didn’t ignore the sign and make loud sounds. I pointed out there is a sign on the door and she said “Well in the two years since they installed that alarm you are the first person to read it.” The last time I came this door was pinned open. I am sure other people read it but they didn’t care about how it would effect other people. I sign in, noting that in this room there are children and pregnant women. One of the little girls is scared, and I am instantly triggered because there is really only one reason I know of for a five year old to be in that office. Heart broken I scribble my information, my eyes letting me read paper today.

I sit and turn my music on loudly, drowning out all but the barest sounds of the room. I don’t want to hear the joys of the pregnant women, nor do I want to hear the sorrows of this child or the frustration of the teenager who doesn’t understand why just because she had sex she has to go in. I did anyway but I tried to be respectful of them because my brain would leap and bound and I will never forget their secrets. Ever. I will try but I know that next time I see a little girl of similar appearance I will think of that girl who looked so much like I did. I think that was what startled me the most. No one, as usual, could tell that something was wrong. That’s what I want. I want people to not be aware that my brain has me in a tail spin where I suddenly connect the new changes in my dreams of demons because of a child’s words in pain, pain she should not feel.

I am pulled out of the dark thoughts by a little boy, I didn’t hear the door and that’s the point of the headphones. Doors make me jumpy and I had parked with my back towards it because that was the best spot for me. I needed to point away from people so I could focus. “What’s that mommy?” “It’s not nice to stare, that’s a wheelchair.” A few moments passed and he was there beside me, “Are you a cowboy?” Not the question I expected. I look up and I can tell his mother is tense, her body is tight and she seems upset. I may have misread this but I instead told her son, “Nope, are you?” He shook his head and rattled of historical details, I could match him and we had a geek fest in the corner. His mother,who I am still watching comes over and asks me why I am willing to talk to him, as if there is something wrong with her son. “Well he started it.” She seems confused by my answer and asks him why he was willing to talk to me. He shrugs, “She’s nice.” His mother now seems worried and tells me he is Autistic, I tell her that’s why he is willing to talk. I am too. I doubt she got why he could talk to me. She seemed stuck on his idea that I am nice and safe when he doesn’t know me. All black head to toe is threatening to the Nuerotypicals, and heavy eyeliner? Crazy goth wheelchair lady appearance doesn’t get nice from them.

I am called in, I wave goodbye to the future cowboy and go into the back. I am lead down a yellow corridor, I am sure there are pictures but I only see yellow, it’s not a bad shade but it is not a pleasing shade at all. It stabs the eye like sandpaper with it’s shade. I had scheduled a specific room because of my disability, and this was not the room we entered. This room was tiny, the door opened and would hit the patient if said patient were on the table which also doubles as Mount Everest. The nurse is confused by the idea of closing the door behind me since I stopped in the middle and look at her and tell her, “This isn’t the right room. I am supposed to be in the procedure room.” It was supposed to be written down but Dr. Receptionist didn’t do this either. I feel frustration, but I am trying to work with people. She goes to check. I try and find a way to park my chair, visualizing first for safety and no, there is no way this room can fit me and a doctor and I won’t park in the yellow hall. That’s not safe for my equipment which I need for daily living.

The nurse comes back and says that they are waiting on a call in to the patient scheduled in that room in a half an hour but leads me to it, because there is no other way. Which is why I specified when I called in, and asked for the accommodation again. There is no other way even with an army of nurses that room will work and the others are full. The procedure room is used for the disabled and cancer diagnosis. It’s no a pleasant room and it effects the nurse. I can tell this. That’s not good but I noticed this last time. There is trepidation with this room. I don’t understand that, because cancer diagnosis can save a life that is lost without it so it’s good. The cancer is the bad.

I am told I can change, the patient isn’t here yet and said it was fine with her to wait. I am honored by this because waiting to know if you have cancer is tense, scary and I have done that a few times. I trade pants for a sheet and perch on this table, which is a safe distance from the ground so if I bungle this? I am okay. The doctor comes in. I find her oddly short. She is kind and we discuss my symptoms and she agrees with my theory that the lining of my uterus got to be too thick and tore things that shouldn’t tear. So we proceed with the testing.

I hate this part because it’s awkward, I feel self conscious and they poke you with sticks. I don’t know of any procedures for men that include as many sticks as when I see a gynecologist. Q-tips are sticks. The biopsy which they attempted to perform includes more sticks. The tool is a stick that sucks things into itself, which is better than cutting. The biopsy failed because my uterus just wouldn’t let anyone in. I did tell her I was having cramps still, and she warned me they would be worse and even the attempt at the biopsy causes bleeding. Which I knew going in, from the last time. It was unpleasant but instead of a hysterectomy there is one thing to try before we go that route. This is good.

Provera and Metformin are both known to force a period in women with my conditions. I cannot take metformin, so we will try provera when I don’t have a period by January. She says if. I know better. I don’t have a minimum of two periods a year and that is part of the issue. My body will let itself go for years, a part of me is fine with this for obvious reasons but the side effects are bad. If I didn’t eat a diet of meat and meat with a side of meat, I would have needed a blood transfusion in the ER from blood loss and my doctor was upset that they did not run all the tests they should have including an ultrasound. I will be getting one of those for my birthday, as three days before said birthday next month I have the appointment. More unpleasantness but I’ve been there before. The worst part is having to pee while they use more sticks to figure out what your guts look like.

I should have been admitted in the ER, at least for observation but I think that was clear from my symptoms. The doctor asked if I was considering suing, and I did not answer. I know I can and I am going to try working with the hospital first to prevent more bungling idiocies in their future. I don’t know that this is possible. I have to try.

I am still stunned at the differences in level of care, but at least in the last ten years there has been a shot at a treatment. For ten days in January I will take provera, this will trigger a period. IF it fails to do so then I get the scissors treatment. I think I know what will happen, and it ends in snips. However, I could be wrong. That feeling in my bones could just be my frustration and tiredness. I am tired of being tired. I am tired of not being able to eat food. The good news is having a period every six months should reduce my acne, abnormal body hair issues and may stop my voice from dropping anymore. I used to sing soprano and now I am an alto. Even when I speak my voice is lower. The one bonus is also a curse in some ways as I have a “male” sex drive, as in the way I desire sex has altered itself. There isn’t a slow cooking of want and thought, there is instead a visual and then an instant need. We discussed this too, I don’t know that I want the ease of pleasure to go away but cancer is bad. Especially cancer in your body where they would have to cut you wide like a fish. If we do a preventative hysterectomy my chances of healing are better. So that’s the plan, if this drug fails then we cut out my sugar and spice. Well at least the sugar. Spice and everything nice should remain, as will at least a remnant of a puppy dog tail.

I have been preparing over the last six months for surgery. Not a specific one but there are several broken things which the only fix is to either leave it be and suffer which won’t work forever or surgery. I have three potential surgeries. My jaw, my uterus, and my spine. Someday they might want to cut around there. So I am gathering things to keep me going when the time comes. The fact that I have avoided most major surgeries until this point is quite amazing medically speaking, because of how much of my body works “correctly”.

I am even working on a plan for Sprite and Nymph. My fear is Sprite’s needs not being met. My having been away for hours today has her draped over my knee, a white hot sleepy kitty. She needs me. I need her. My doctor having anaphalactic reactions to cats doesn’t help things either. I am not resigned to surgery but would rather that the provera works however that is not what my body tells me. At this point I hope that sense is wrong but it has yet to be wrong. I will know before this time next year if it was right and that is enough for me, at least for now.

I will not miss having a goatee if I don’t shave. I will not miss cramping even after the period is over. Both of those should go away with a “withdrawal period” as the forced period is called. My doctor was shocked and called it malpractice that no one had even tried anything in the last ten years because both of the aforementioned drugs are not that new, sometime with in the last five years they should’ve been brought up. Metformin was tried for a non uterus related ailment. Doctors are so tiresome at times. If all doctors followed their own protocols so much would be better. They are simple little things that are ignored and often make the difference.

I am too tired to be angry but I am very disappointed. There is a sense of betrayal here with in me. I trust these people to protect me from my body but they do not. Yet this is what I expect of them too. I have that sense of wanting to just flee this state again. If I could land safely anywhere I would go right now. I wonder if that urge comes from the growing knowledge of just how broken this state and it’s systems are? I am not sure. I just know that my future isn’t set in stone and I am hoping that no one tries to argue with me about having a kid first. I am sterile anyway, but I was told today that medicaid will pay for me to get my eggs scraped. Since that’s just what medicaid should be covering? I almost cursed.

The doctor as she poked me with sticks, for some reason female medicine is an endless line of sticks, she brought it up. She said she has to make the offer. She didn’t seem shocked at my scoffing at the idea. I don’t understand this however. I also am left trying to imagine medicine for women if we were men. There are similar men’s issues to my problems but they have all sorts of treatments from the physical non surgical to a myriad of drugs. Why is it that my medicine for my body has to be archaic because I have a vagina? This is illogical nonsense. The patriarchy just screwed me vaginally, that was my literal thought when I had that revelation. If in ten years the only thing is another form of BIRTH CONTROL? That’s IT? No one tried some sort of other thing? I have ideas that could help medically I think but I don’t have the science to know if I am right.

Once more they have me wanting to go to school. Once more they have me feeling frustrated. I was triggered and in pain and again had people questioning if I hurt as bad as I say I do because I am not screaming. It is exhausting navigating around these iron poles of nuerotypicality. How do they expect me to react? Does everyone have to scream and cry like a baby?

Oh yes and I had an allergic reaction to betadyne in my cunt. That’s not pleasant but not as bad as latex. Turns out that the ER should have also asked if I am allergic to shellfish, and as I haven’t used betadyne in years and always was sick anyway when doing so I didn’t know. The reaction is minor, just a rash and my doctor was very quick to treat it and change the sterilization stuffs but still. Why wasn’t that question ever asked before? I know that shellfish and eggs now have to go on my allergies list for the short list or I am screwed and rashy.

I am going to cuddle this ball of fur named Sprite, she’s currently in her dreams but her body is adorable and soft. Her paws are hanging off into space, her body is curled against my leg and between the two of them and she looks like she is smiling. She isn’t snoring yet but I am going to hold her for a while. I haven’t been able to do so for the last month due to cramping but she is worth it and I think I need her too. After all she always treats me as a person and loves me, with her I don’t have to be stunned at the rarity of a doctor or nurse who realizes I am competent and independent. Even if that happens only once they realize I got to the table my self, without their help. I changed and did it all because I can do it on my own mostly, and the nurses weren’t willing to assist me so I dealt with it to get on with my day.

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.

Vertigo (Trigger Warning)

I wish I was about to write about the movie, by Hitchock. I love that film but alas. I am talking about my latest issue. I am not sure if this will effect my writing ad…. okay that is a lie. It is effecting my ability to think, because every moment is a spinning cashm of nausea and if I open my eyes I cannot stop the urge to be ill. I have endured this before but never for so long, nor with the notion that it may be permanent. That thought leaves me fighting tears.

I think as a result I must get rid of things that make it more dangerous to try and walk, because I have no choice. I must walk as my chair is broken again. I do not think any amount of money can repair it. I would still face challenges with a working wheelchair from this like not running into walls, but I would not be at an added risk of falling.

The vertigo has been going on for a few weeks. It was so minor at first that it was more queasiness than dizziness, and now it is more dizziness than even thought. I am crying while I write this and have my eyes closed to try and leave some room for words to formulate themselves. I am sorry if it is illegible at the end but I trust my hands to do their job. I rarely look at the keyboard when I type so why start now?

There is a  problem. William Shakespurr. When I can see straight, without the world spinning so fast that I cannot breathe muchless pay attention to where heis, he is a tripping hazard. He attacks my feet at times, and I cannot take care of him this way. I have kicked him hard, four times today. I just got up. The only reason I kicked instead of tripped over is the wall that was my friend. I am considering trying to find a temporary home for him but I secretly know this is not enough. I have been staring down the barrel of his being too much for my to handle for a while, but the last thing I want to do is leave Sprite alone. She needs a companion.

When i went to the ER because I got so dizzy I either fell and hit my head knocking myself out or fainted from the dizziness, which can apparently happen, Sprite came with me. She was noisy during the ambulence ride, she was noisy during any proceedures but over all she handled it well. She even managed to endure my blood draw. The most likely cause ofm y vertigo is Meineire’s diisease. A genetic condition that is rare. Of all the damned things. I am so angry at those words. rare. Genetic. As if it is their fault that my body is screwed up.

I no longer can watch TV, listen to music while trying to walk, the sound vibrations make the vertigo way worse, and the TV people move the wrong way making the queasiness worse. My ears just popped and the spinning for a moment went away. It’s the weirdest thing. It wasn’t long enough to spell check this post, but it is enough I can try and calm down. I am only calm about this when talking to people. I think that this shield, to protect myself, may give people the illusion of Super cripple. The doctor yesterday said to me even, “It cannot be that bad you aren’t crying.” To which I replied, “I am like a clown, my tears are on the inside, because I don’t have the energy to coddle you with them.” He wasn’t too happy but did his job sufficently. He wound it down to a course of no treatment possible, that I can agree too.

Another player in this is my mother. You see yesterday I found out my liver is starting to crap out. My liver function test was off by enough it is a concern, The only thing is that should not cause Vertigo. No, instead it is a hallmark card from my childhood. Drugs I did not need to try and make me be docile, emotionless, and just what my mother wanted. I took 90 different antidepressants in the course of ten years. There were other things in there, antibiotics, sometimes pain meds if I hurt myself enough that it was not ignorable, a doctor who kept insisting Itake drugs that I went into anaphalactic shock with so she could experiment with it. Funs tuff. This is where the trigger warning plays in. In my persuit of a ride home from the hospital I found out that my mother expected this sooner, and has no remorse over the fact that she fried my body. This is MY BODY not hers. How dare she be given the right?

I know, it is the rights of a child. None. If I was an adult woudl the doctor have gotten away with poisoning me? No. If I was an adult would my mother be able to control what medications are prescribed? No. The doctor would have been sued, instead of congratulated for making me quiet for a week. Yesterday reenforced for me too that the life alone has a challenge. When you have a need and it comes against the Superbowl? Even people who do not watch it will expect money in exchange for a five minute drive. i come secondary to everything. Why? What did I do to deserve that? I was born.

The more my adulthood progresses the less I want to see anyone in my family. I did however, before I even knew that the vertigo is likely a permanent fixture in my life, call the agency and ask for weekend caregiver hours. I am giving up something to gain something. If I hvve a weekend caregiver, I don’t have to risk going hungry. I cannot risk bending enough to reach the topshelf of the fridge. I cannot risk food. My mother’s reaction to my asking for a recipe that will be easier on my already upset stomach too was to point out that I should just not eat then I can lose weight. Is it any wonder that this consistently queasy feeling has me remembering my time as an active bulimic? Bulimia and anorexia are not things you ever recover from, but they are surmountable. I cannot keep my food down, but I do want to.

I am not certain I can follow through on getting rid of William. I love him. When he behaves he is one of the sweetest cats, and usually his misbehavior comesout of his own issues or bordeome. He does not understand that walking me to the bathroom and stopping in the middle of the door is a bad thing, and i do not think he ever will.

Vertigo is the most disabling condition I have. With the others, at least I could do things. At least i could think. With this I can just sit here, or sit in bed.

Long Term Side Effects

I am trying to go on with life, so I must post. Yesterday I found out that my cholesterol count doubled in the last year. I was healthy last January. That was the last time I had made it in to the doctor, before the world surrendered to the darkness and the pustules of humanity took over. It turns out that eating cheese for an entire year and nothing else is bad. I knew this, and I expected bad numbers but that doesn’t make this less scary.

My genetics predispose me to everything. My biological father died from HEART DISEASE. I must be healthy, for me. My sugars are high. I am sugar resistant. This leads to diabetes, and causes very similar risks and issues leading up to it. Finally I have an answer for why my eyes just won’t focus on that piece of paper, or why my feet are always a little blue. Finally. My grandfather died from Diabetes. I do not want to end up with Diabetes. Sometimes my only goal for the day is to earn that brownie.

Now I actually do eat rather healthy when I can, but like all humans sometimes I don’t. Going over the list of approved, safe foods with my doctor we did look at the fact that I just can’t cut back on enough fats with my medically necessary diet. I am on a waiting list to see a nutritionist but I am being proactive today.I am also grateful that aside from palpitations related to PTSD and Panic Attacks, I haven’t had chest pains.That means I am lucky.

Being proactive means Low Fat Food. This means I no longer can revel in the tasty yoghurt. I may have to give it up since lowfat yoghurt makes me sick. That part goes to the dietician to discuss. Today I bought 1% Skim Milk. I am scared though, that was all I could change. I mean yeah I am changing my cheese, but I still eat a lot of it. I now am a Mozerella girl, and I do love my super fatty Cheddar. I can’t afford more fruits yet, so I am considering growing some in my house. Maybe I can set up a small garden but will the cats eat it? (Yes, William Shakespurr will. He is part goat I swear).

I no longer drink Soda. That was also something I was allowed, cheese and soda together are really nasty for your body. My cholesterol, the bad, is over 300. The good is 24. I feel like I have a time bomb in my blood. I wonder if a vampire prefers someone with lots of fat in their blood or if they prefer the lowfat girls like in the movies. I bet people with bad cholesterol taste better.

I am looking forward to finding out if skim milk, despite it’s lack of flavor, sits better in my stomach. I will miss the eggnog annually, I will miss cheddar, but maybe if I get everything under control I can periodically have a serving. I already try to measure out my food so I don’t over eat, partly so I can eat. I already avoid most of the super dangerous stuff. I just can’t have a few of the snack foods I enjoy.

I am not sure how I could survive being diabetic. I can’t eat so many things, so that is what scares me most. These are the long term side effects of surviving. I will get everything back to a healthy level.

When Kindness is Repaid With Need

I am writing this post to try and distract myself from the distress of my neighbors. At this moment their infant is very sick, and they called upon me and my Person for help. I did my part, but, my Person is still in action. Why did they come to us? Complete strangers? The love of parents will cause the strangest actions.

I live in a very bad neighborhood. It is not bad enough to qualify as a gang war zone but it is still in a location where the middle class is almost non existant. I am far from middle class, though I am making strides to escape poverty. I believe most Americans are however, which means I have competition.

My Person tends to be on guard with everyone here. He has to, in order to feel safe. I confound him by being nice to everyone we meet. Some of the people here could be quite dangerous, yet, I will not back away just because of stereotypes. I trust my instincts and feel that most of them are acting as thugs in order to feel safe. It is a cyclic sort of violence that feeds on itself. I made friends with our neighbors who had immigrated. When they vanished I mourned. I believe they were evicted but I will never know. The neighbors who called on us for help bear the marks of multi-generational poverty in New Mexico. The men are bent over from hard work, the woman is often exhausted from her own work of mothering and having a job. Their children are at a higher risk for disease because of a lack of medical care.

Some of this comes from the prejudices of those who are in power. It is harder to get a job or even a decent education. A very high percentage of people in the local school system are so under educated that they cannot function in any other state. This is the worst state for raising children. This isn’t my theory or opinion but is based on the polls that the government takes Annually. Most of the people I went to High School with were illiterate.

My neighbors face these challenges, and yet as their baby who was smiling and waving at us from the balcony as my Person and I left this morning fell ill they knew that there was a bastion of kindness. I have had small conversations and made the effort to introduce myself before they went upstairs. I wave, I smile. They didn’t know if we had a phone but as they do not they called the hospital. We live right next to a hospital but the Ambulance will take over half an hour to arrive. Though they could walk to the ER from here, it is safer for the child to be driven. My Person is taking them now and will sit with them for a while.

I feel worry for the baby. I have no idea what is wrong with her and the millions of things that it could be rush through my mind. I remember looking up at her, and seeing so much brightness in her eyes. She waved, and I waved back. She giggled and kept waving. She isn’t even three yet. She has barely begun to walk on her own. Her dark hair was up in a little pony tail atop her head. She looked healthy. No child should suffer illness.

I know her mother is ten thousand times more worried than I am. I know she is holding her child in her arms and is praying to whatever diety or dieities she believes in. I hope after she has her child back home, safely in bed, she remembers that she can call on her neigbbors. This isn’t done here. It is agains the entire rule set that is taught.

When you knock ona door, it is usually to beg for money or food. It may be to try and over power the weaker neighbors to rob them. It may be to sell something. This is the presumption you must live with to live where I do. It can be terrifying. I do not answer the door, because it is not safe to do so. My person does. We have had to replace our sign of places that people can go for help with a sign that simply says in two languages, No Solicitation. The list was ignored and instead drew more harassment for what we have.

The culture of fear that pervades the people here is more frightening to me than the threats that are offered through actions. I do not know if it is my unique perspective on the world or if it is because I have broken free from what I was told I had to become in order to live but I hope my example plants the seeds of kindness in some of the people here. Adults can learn to talk to one another, the children can see that it is okay to play even as an adult. A simple hello may have saved the life of a child. It may have made it possible for her mother to get her to the hospital.

Despite the dark world that we live in, a world full of lies, isms, discrimination, and even torture there must be kindness. I have said before that people across the minorities must band together, and I say it again. Even a simple smile, wave, nod, or hello can build a bridge. I did not see the bridge until tonight but it was there, a tenuous connection that has grown stronger.

It is easiest for me to connect to people that I perceive as like me. My neighbors seem very much the Other to me. I catch myself reciting the lies that the “Man” has taught me. The propoganda of education, media, and even previous experience has left me having to fight myself many times over to continue my campaign of genuine human kindness. Sometimes it is forced. Tonight will remain as a reminder to me that this Kindness will be repaid.

This is what I get for being kind. This is what I get for saying hello. This is what my Person gets for answering the door at two o clock in the morning. We get the chance to protect the innocent. We get a chance to show someone else love. We get a chance to do the greatest things in the entire world. We get a chance to give hope. We get a chance to help a child reach adulthood. We also get a chance to break down barriers between two cultures. These people are no longer the Other. They are simply people.

It occurs to me as well that any single person could do as I have done. Anyone could answer the door, hand someone a phone, or even drive them somewhere. Anyone can offer hope, kindness and love. It isn’t anything special I have done, nor should it be rare. It may have been missing with in the lives of these people but it is here now. They will hopefully plant their own seeds of kindness.

It is said that Misery loves company. I believe instead that Misery is really a mask for fear. I will update anyone who reads this as soon as I know what is going on with the precious little girl who lives upstairs. I know too, that after this our greetings will move beyond hellos and our interactions will grow. We planted the seeds, now the garden has begun to grow. Have you planted your Garden of Kindness yet? When it blossoms it will begin to change the world. The world is as large or as small as the people who act and live with in it.

Vanity

My vane side will be challenged Monday. I am not so sure a dash of vanity is a bad thing. Vanity helps me present a good image when I am in a professional situation. Vanity gives me a reason to brush my hair even when I cannot get out of bed. Vanity is not as wicked as it could be if you only have a small dose.

I am going to the Dermatologist to finally give in, having a part of my head shaved and a giant mole/tumor cut out of my head. I put it off for over a year but the Mole thing is growing again. I put it off more out of my fear of pain than having my hair look a mess. I am going to buy some nice headscarves and cover what is missing until it grows out. I also look darned good with bangs, so I will eventually have those too.

Haven’t I had enough pain? The pain alone from this mole is bad, but the needles in my flesh that will come Monday will be worse. I can’t avoid it anymore however. This mole is not cancer. I am pretty sure of that. If I am wrong I’ll regret waiting to say anything for years and procrastination but, it is the result of sun damage.

Some of my worst memories with fashion center around this mole. Going to the salon they always cut into it with the brush and scissors, ignoring my warnings that I had a giant mole that stands up an inch tall on my head. I hide it in my hair but, I have never felt it was hidden. My fear is that my hair will not grow back in that spot, that forever I will hold more scars, more risk for torment. More otherness.

Beth Oblong from the Oblongs Series with her short hair and tumor on her head.

Beth Oblong from the Oblongs Series with her short hair and tumor on her head.

This image encapsulates how I have felt for years. Beth Oblong is a girl from a cartoon that was geared for adults called the Oblongs. They live in a Toxic Waste dump, their otherness is flaunted in the show, the otherness got it canceled. When I first saw it, I identified strongly with the character of Beth, if only because I have a rather large thing sticking up out of my head. It’s always there, often it hurts, and as a child I was not allowed to hide it adding to the many reasons that the other children could ridicule me.

That ends Monday unless a surgeon is needed to get it off my head. I am scared, but happy. It’s one way to lose some weight right? I do not need to include pictures of my actual head mole here, nor will I share the grotesque healing process with you.

This is just one way that vanity can help and hurt. My vanity will help me work out ways to hide my wounds which will let my heart heal but vanity also stopped me from seeing a doctor sooner. Doctors can ridicule too and being made fun of for being different has left me wanting to never show my face again in many ways.

Just remember, if you have any moles or skin spots that seem off, do see a Dermatologist. Even if they want to cut it out, it’s better than being sick. Once my head mole is gone I can brush my hair without having to skip a bit. I am so afraid I keep thinking it is tomorrow but there is just one more day, one day left with hiding it. One day.

Then after I heal, just like the one I used to have on my face, I will be free.

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