Voices Rising from Silence (PTSD Trigger Warning)

As an advocate for myself and when I can other people I run into a question a lot. “How do you do this?” This question most often comes from my fellow autistics. As someone diagnosed as an adult I find a lot of my experiences without diagnosis mirror the “medical treatments” others on spectrum who were diagnosed have. Child abuse in disguise as therapy in order to teach control reigns the autistic childhood, we learn silence. We learn stillness. We are erased with in our own bodies as much as possible. We are punished for existing. The best autistic parents even do parts of this because there is no voice that they hear, yet, from the autistic community. Our song has just begun.

The autistic culture is one of enforced shame, it is one where we deal with a lot of hate just for being. This is in part due to a lot of hate organisations like Autism Speaks, who sink their budget not into helping people but into quackery, negative ad campaigns and convincing newly minted parents of autistic children that their children are a burden. That their children will never live on their own, get married, have a “real job”, or anything that is valued as productivity. These parents are convinced that there is only pain in the life of the autist. So they create more of that pain, feeding it. I do not deny that a lot of things with autism really suck but I LOVE who I am.

How does one learn to speak? I think this how to might apply to survivors from many types of abuse. It is about regaining the voice. This process is not universal and is a general guideline to what I answer the most often when people ask me how I blog, how I advocate, and how I risk going out of my house being so far from the norm. I think I hide less and less of my abnormality. I celebrate it now, but it is an on going process and journey.  I wish there was a universal answer but here is what I worked out as far as what I do subconsciously and consciously that I can put to words.

1. When I want to be silent out of fear, I speak up and risk the consequences. This to me is the basis of self advocacy. Oppression is born in a culture of fear, so I must not obey the fear that tells me to be quiet. “If you are good and quiet nothing bad will ever happen.” If that was true I would be a far different person, because being “good and quiet” only lead to pain. It leads to secrets. Good and quiet would mean still being with my exhusband, it would mean watching my father murder my step brother with a frying pan, and it would mean condoning every act of rape, malpractice and other harms brought to me by people who tried to take advantage of my selective mutism, of my physical fragility and of my silence. Sometimes it is a small noise, other times it is a roar. Sometimes it is actually words. Sometimes a song. I am not silent. Not anymore.

2. When I am threatened, I do not revert to silence. Making noise leads to punishment. It leads to the threats that come in a variety of forms. I had a medical professional threaten and then withhold my pain medications on more than one occassion, because she did not believe I was not addicted. I suffered. I was then told if I kept speaking up to her boss about these threats and punishments she would have me black listed. I took that threat to her boss and switched doctors. I have a doctor now in the same facility. I wanted to be silent. She is no longer my doctor but treats others, thus I also am in the process of number 3.

3. Do not let the threat harm others. This is a mixed bag. The threatening person may be someone you cannot stop. This protection must never come at a cost you cannot live with. This means do not chase the axe wielding halloween monster, go for more qualified help. It means talking to someone’s boss, documenting issues. This is often what gets me to perform step 1. If the doctor was allowed to bully me with medications I needed and threaten my life that way, she would be allowed to do that to other people who may not be able to endure it, be able to adapt and if someone else spoke up without documentation I had, then I was harming that person. Thus i went to her boss in step two. As you can see these steps are not in order because they are more a mobius strip how to guide for living.

4. Document the threat. Little notes from my exhusband, recording the doctor without her knowledge as it is legal to do in my state, pictures of bruises. Those parents who send their autistic kids to school with hidden cameras and find out that not so shocking to any of us, abusers aer out there ready to harm your vulnerable chiild for being who they are.

The same process applies to why I write. I cannot put on a super hero cape, race about the world and fix it. I must slowly advocate for myself and then when I can on bigger projects.  I cannot advocate for others if I do not come first. i think back to my first few tries at blogging. I threw on a secret identity, I tried to hide who I was. Yes, there were other blogs before Textual Fury caught fire. I stumbled, I struggled with my words out of fear. Then I realized that was what i was trained to do and the rebel that lives in the core of my being took over and I wrote the first post here. As I wrote more and more the tone of my blog changed and I let out the “monster” i feared. It turned out that person is pretty darned cool and I began to push further and further out in the world as myself. I never hide anymore.

So how does someone conditioned their entire life to a culture of silence learn to speak? By doing. The posts I never share, those still happen, the poetry saved on my hard drive instead of published, facebook and talking to friends, gathering with other autistic people. Knowing what I know now those are just little things. It has to be something you want, so you have to stop hiding from the desire to write, to sing, to speak, to shout to be. The thing is? Just wanting to IS enough. When people ask me for help it makes me proud, not of me but of them. I am proud of every single person who takes on the difficult journey of learning to speak for themselves. This is not a challenge exclusive to autistic folks, though the culture of silence caused by shaming and abuse seems to be so prevalent among my people that there are no autists I know without PTSD or that they know. There are no autists without pain, suffering and a knowledge of abuse that is intimate and too close, that I know of… except perhaps those children being born right now. So we are learning to speak so that they do not face the battle of a life where our words are forced back down our throats until we choke on them. That is why I wrote this out. The how to on blogging is the same as other things. Baby steps, do what you can and try to do a little more each time. Cry, laugh, feel happy, feel good, struggle with it. Live.

I think of the others who came before me, for I was hardly the first blogger with autism out there. My brain does not want to write names but I can see faces, words piled up before me that create a beautiful sky and world. I remember the first moment I read something by autism speaks and it broke my heart and filled me with fear. Was I seen as such a monster? Did i deserve the abuse? I was a baby back then, not yet a woman and lost in a world of flying diagnosis where everything seemed to stick. Then I decided to find adults on spectrum too. Now I have loving friends who hold me close, even if it is just as text. Better as text since I can enjoy that. The diagnosis that stuck saved me so I could find out that no, those descriptions of horror are wrong. Even if I had never been able to live on my own, they are wrong. There  should be no shame in having a need. There should be no shame. So i am writing this for the people who inspired this post by speaking,by learning to speak, by asking, and by being.

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Bruises

I have multiple conditions that require that I bruise easily, and I always feel bruised after slight bumps but it isn’t until weeks after the injury that I start to show bruising.

In my early life I thought this was a good thing. It meant that my father’s abuses wouldn’t show and therefore I was a better child. This was directly reflecting the attitudes in my home. In fact my lack of bruising often caused my family to ignore the seriousness of some of my injuries, which has lead me to my current state of disability.

I have wondered often in my life on many topics from “Is Nicolai Tesla Autistic?” on through, “Why does Sylvani try and nurse milk but can drink water?” This is one of the topics I have mulled over the longest. My doctor’s offered no explanations, which at first disconcerted me. We are raised in the US to believe that our doctor’s are all knowing and the ones who behave like Gregory House are the ultimate in doctors.

This prevents people from asking questions, this makes it harder for a disabled person or a person with a yet to be diagnosed chronic illness to be taken seriously. If said person has a vagina and breasts on their person they are going to have to fight to have the slightest ailment taken care of muchless a more serious issue. I became highly aware of this when I started self diagnosing.

Self diagnosing is a huge no no, as this gets one labelled a hypochondriac, even if the questions are meant in an innocent fashion. In my case it was little moments where I met someone with a disorder, such as Reynaud’s the circulatory condition. My case is actually worse than this person’s and as I asked her questions about her disorder and found I had literally every symptom I began to worry. She was nice about it and we both believed I had the same condition. It helped that I would turn blue faster when it was cold or when I was stressed.

The adults ignored the physical symptoms and decided I was somatizing. So I learned to keep my mouth shut and stay away from doctors. I thought for a long time my mother was absolutely right about the medical world. At times I wonder if her experiences with medicine and their misdiagnosis are why she doesn’t go to a doctor, but I feel more certain that it is because an abuser also wants their victims kept away from medicine. This is a part of why people die from abuse so readily. If you cannot get a doctor and have internal bleeding, you are screwed.

Over the years I have never once had an answer for why I bruise so slowly. This has inhibited my ability to know if i am injured in areas where I am numb if the skin is not split, sometimes the skin splits don’t show for a while as well. For example when I was injured on the paratransit. It took me almost a week to figure out that I really was hurt. This was between my spinal cord injury, slow bruising, and the signals from my brain putting the pain in my right leg between my hip or my knee when the wound was touched. I couldn’t find anything in the area my brain TOLD me was hurt.

I am thinking on the life long ramifications of my body’s build. I know, at least I hypothesis, why I don’t bruise like someone with Ehlers-Danlos usually does. Not only because no two humans with the same medical illnesses are identical, even identical twins have interior differences, but a confluence of small veins and low circulation has kept me from being black and blue.

Every blood draw I have had I am faced with a phlebotamist’s lament about the smallness of my veins. Every time I have to convince a doctor that I have EDS, I must point out the fact that not every patient has the significant bruising and though I feel my bruises they don’t always show. It isn’t the excuse given before about deep tissue bruising. Not every bruise is going to be in my muscles, and those hurt in a whole different way. No, my lack of bruising is a lack of blood flow to the injury.

I started thinking on this yesterday as I woke up from my nap and my face resembled a chipmunk. The dislocations were atrocious yesterday, so my face shows the marks still. Perhaps I bruise less because my blood is busy swelling up my head, or my hands, or anywhere but where I expect too.

I can go back to my next task. Between halloween preparations I have been watching every James Bond movie that has been produced, all 22 of them. This is a painful excercise yet it has a purpose. I decided to find out the evolution of the Bond Girl. I remember loathing Halley Berry’s portrayal and being uncertain as to why, so I decided to investigate. I am not liking my findings. I suspect some people may deem them controversial!

Also a reminder: I am not planning to write during October. October is my runaround like a chicken partying month, so I shall resume my current scampering.

Cat Has Fever

Nymph’s prognosis is grim. I put this off for a few days while I couldn’t sleep. I just kept focusing on her needs and mine, so I managed to get some sleep down and she’s stable I think. Her fever hasn’t dropped but it’s not getting higher and she’s a bit more able. However after spending every penny I had and borrowing more at the Vet’s office, it was all to know that unless we have a ten percent miracle, my friend is going to die. I can’t keep her from behind dehydrated or in pain, and that makes me cry. I am trying to spend most of my time holding her but she is so hot she literally burns me. My hands are red and sore from her heat, 105 sometimes higher. This is when being temperature sensitive is really a curse. It’s not the shower, hot days that I miss. It’s not being able to hold her for as long as she need.

Thursday we go back, unless she gets sicker, and the vet will see if the mass in her lymph node was just an infection. However the vetrinary hospital, which I will be writing about soon because they have been more than just doctors but a support system for me, they did everything they could to make sure this wasn’t something we could really treat. The minor chance that this isn’t FIP, which I will let you google because I just can’t do the link thing right now, that chance is one we are taking. If she doesn’t get better on Thursday and there is really no hope, Nymph will not be coming home with me at least alive. I am trying to figure out what I can do for Sprite now, and I know the answer for myself is time.

Sprite keeps staring at me when I cry with shock. She has a fever now too, though hers is minor and may just be allergies I feel rather broken. I would give the world to make it where neither of them had illness ever, no pain. Just as I would for my sister or my brother or my friends. I have decided to ask the vet if they can use Ny’s body for science, if she passes. It’s a pretty slim chance so I am mentally preparing but I can’t stop hoping. Hope is the worst feeling I have ever experienced. It feels so good until I look at the facts. I would rather not hope and be wrong. I would give everything that we are just wrong and the anitbiotics cure her infection.

I am honored by a few people, which I will post about again with the hospital but one of the vets, the Ultrasound specialist, she was willing to not charge me full price so we could make sure that Ny hadn’t eaten something that wasn’t safe for her and it wasn’t just a perforated intestine. Which would be more expensive, but she wouldn’t be sentenced to a painful death, the only real risk there is either no treatment and I had found places that might help or anesthesia. Then there is the person who never met me, but they donated medications for Nymph. These medications are easing her pain, and have returned some of the brightness to her eyes though she is still just laying there. Then, there is every doctor at this hospital that took a look at her for free, only one is getting paid for that. There are the techs. Each of them made sure she was comfortable, though they did comment that she is such an obedient girl. If she lives, I know she has completed her sit training. She didn’t even fight during the ultrasound, or when they had to shave her stomach. The sicker an animal is the more it fights, especially things that hurt. That’s nature. Nymph showed them her brilliance and strangers responded to try and help us.

Still the persons I owe the most too over this, they are M. Of course you knew M was involved, he dropped everything to help. Then there’s my sister of choice who was willing to cost her family money and then some to come out if I need her. I just have to ask. I know that I am blessed, I don’t use that word often but even through the pain ahead, because I am still not doing well at all, there is no reason I cannot be honored and loved. It feels so odd to me to find love in this situation. When Sprite was electrocuted we found hate, anger that I was poor and dared to have an animal in my life, and so much pain. There was no solace, there was no comfort, and there was no love.

Nymph also turns out to be photogenic inside and out. Her ultrasounds are the type you want in your textbooks. I gave permission for them to be donated, if this does indeed turn out to be FIP for the simple reason that this would be the more rare type. The one that is harder to diagnose. The one that lets her live longer. I am going to go hold her now, and after we know I have more decisions to make. Someone even offered to buy her a burial plot, though I don’t know what to think about that. I am confused by the entire mourning industry for pets where people wear their animal’s ashes or get diamonds made with their DNA sequence entwined with the stones. It’s confusing and overwhelming but I can see in some ways the comfort that can be offered.

I know too when I get my ultrasound in a few weeks I’ll be thinking of this. I just hope my pictures are as easily read as hers. Nymph has lived up to her name, bringing sweetness as all good faeries should. Sprite does too, Sprite is far more mischevious than I ever let on but right now she’s mostly staying with Nymph. She’s protecting her from the things that would upset her and I have never seen her love another cat this much. I told the staff at the Hospital about their meeting, how there was no hissing or growling and the one time there has been it was Nymph not sharing food, and they said that just proves how rare a cat she is. If she survives she will be a service animal, because she has also been comforting me in the little ways. She is still mimicking Sprite. I know Sprite is fine because she is still playing. It hurts to watch her try and get Nymph to interact more than with the foodbowl or waterbowl. Ny watches but won’t jump up.

The final thing is, I have lost animals before. I have lost people before. I am confused because I never cried this much over a person or any animal,. I don’t cry. I did over Colors. I did over Snowball. Then Cookies but no human has brought me to tears except my Grandpa Murray. I have been called a monster for this but if I can love so much that it makes my heart explode before anything is wrong that I know of then why is that? I know Nymph was either born with this disease or at least had it when she came here, I know it isn’t my fault. I am not self blaming as is my tendancy but I feel like something inside me is being pushed too far and I can’t figure out what will happen if it breaks. I think it’s my heart, but I thought that was already broken. It isn’t loving that hurts though, it is not being able to protect her.

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.

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.

Privileged

We live in a world of priviledge. White, Male, Able bodied, and sexual are merely a few. My awareness of my disability became a journey into the cryptic world of truth. This is a part of what has lead me to become a reporter for a local paper. The staff understand that due to my limitations I cannot always “do it” but in turn I understand they have questions about who I am. My questioning mind seeks information out, and I never stop analyzing. This means I also have some very high standards for my social interactions with people. I know what I like, and screw you if you cannot maintain a consistent approach.

Having a diverse friend base, this does at times cause internal friction though I have only told the people I am rejecting to go away. I resort to the screw you if I cannot get through to them with the concept that I am not their friend. This as an adult has occurred with two people repeatedly. Today I told my fiance about a woman, Cynthia McKinney who was kidnapped in a foreign country. He hadn’t heard about this. I admit since we rarely watch the TV this isn’t a surprising factor, though when I mentioned that not many others had, excluding the twitter users and bloggers none bothered to talk about her capture, he was floored.  He then said the most wonderful thing, for it filled my heart with joy that I live with a man who is aware of his privilege. “It’s disgusting. We have these rules, that allow people to do that crap and feel better. It’s a band aid over a slit throat that’s dirty, old, and infected. Sure, we think we’re fine but our body is dying.”

Our body is dying. I think on privilege often. Neither of us can ignore it. As a disabled woman, I run into privilege daily. If I leave the house it is there. Yesterday, I was told just how convenient my wheelchair is because it has a sunshade. In my brand new effort to not be Super Cripple, I said, “Absolutely, I only had to break my spine, become homeless, and develop an allergy to the sun in order to have this convenience. Want me to help you get one? I am sure I can find some way for you to become disabled.” I said it with a smile. The cold knife of sarcasm caused the cashier to falter, she looked down, and then I was invisible. She handed MY change to my fiance. He tried to correct her and pointed to me but she just set it down.

i made a choice to use the cutting words, yet this is not the first time that this same cashier has said this. She doesn’t seem to remember that she has done it, and I don’t need to be exposed to her ignorance each time. My fiance and i talked about it before I went home by myself, wanting the sun on my skin and knowing that the side walk was safe between the shopping center and the house.

He asked, “Are you okay?”

I replied with a frown, “Yeah, well no. I am so tired of that same behavior. I think I may write the store manager about it, though the other employees also do the same stuff.” Each time we go in, I have someone leaning on my chair, patting my head, and in general am treated like a child. This is a national chain, and my fiance having worked there knows that Walgreens prides itself on how it’s employees are given sensitivity training. With a higher than average rate of ableism in this store, I think the trainer was flawed.  Every time we go in, I am required to educate someone. It is a burden. I usually just need a cool drink to lower my body temperature so that I don’t faint. I may actually just want to get a candy bar. Why am I forced to deal with their ableism? I cannot do so in silence, or it will get worse, but it is exhausting.

He nodded, “Maybe you should offer to retrain them. For a fee.” I laughed but seriously am considering this. I also plan to detail for the management just how much we buy at their establishment. My fiance is lumped into a new category with me. Each time we are out he is given the pitying look by someone, and often has mostly older persons (yes, an entire generation of people oblivious to privilege exists) whisper to him how nice it is that he takes care of the wheelchair woman. Most actually say “Stupid cripple.”

Sometimes I relish his responses, how can I relish the pain and shock his refusal to blend in with other people causes? I think it’s the freedom it feels. I almost feel like I don’t have the right to do this and that is when I start super cripping. It’s a stolen moment of equality, a moment which by all rights is mine, but has been taken from me by the limited acknowledgment of generations before. My favorite response to a person doing this was actually a few days ago.  He was more frustrated than I was, it was July 3rd and we had to get food. Sprite was tucked up in my sun shade and was very miffed that we hadn’t gone home, but without food there would be consequences. All of the local stores were closing early.

I had just cursed someone out (I really said the”f” word) to get her to keep her hands off of me, and it took the threat of bodily harm via the Scooter to get her to step back. I was seething, then my person, my wonderful person comes and gets what we need off of that aisle. He doesn’t know it’s the same woman, as we are walking towards the next section she sidles up to him, I allow this because I am sure she’s about to tell him how evil I am. She says, “It’s so nice you can tolerate that thing.” Thing. Dehumanized in one sentence. He turns a bit red with rage, but she’s about my mother’s age, old enough that hitting her is worse somehow than hitting someone in our age group. He wanted to, it was there. We were both seething with exhausted frustration. “I mean, cripples are such burdens.”

I heard his response though I dropped back. In all honesty and openness I was considering how hard to ram her, and ifI should try to break her hip. I wouldn’t really but at times the visual is so wonderful. Imagination can be a great equalizer. He replied with anger, “She’s not a burden. If anything I am a burden to her. I don’t always pick up after myself, I sometimes expect her to do things she can’t and she does this with grace. She’s not a thing. That’s my wife.” He likes to call me his wife and I really do like it too. “My wife is a real lady, unlike you. She deals with people like you every day and she hasn’t killed any of them yet but she’d be within her rights.” Sometimes I want to and I usually share this with him, to let off the steam. “Another thing, if she’s a thing so are you! You have the privileged of a working body, it isn’t a right. You can be in a wheelchair like that.” Snapping his fingers he then sped up. I zipped past her, and rode beside him with great pride.

We talk about in this house often. There are no children to educate, it is merely something we both see. He has grown, as I have. In fact, he often tries to subvert is priviledge where he can. When he sees someone no matter who they are, having a bad day, he allows them in front of us in line (barring so low energy that this is a danger to my health). He does this to try and brighten their day and does this regardless of gratitude. Most of the time there is a grunt of anger or acknowledgment and that is it. He doesn’t stop. I note most often he does this for women, children, and persons who are most often ignored, allowing the men to wait. I am not sure if this is an expression of privilege but it is also the sort of person I would leave waiting, so if it is it is one we share. He is a joy to watch in the world. I often feel a separateness from most people but not with him.

How many white men who are so privileged to be in their 30s and still have a credit card from their parents usually see their privilege? How many white men usually can see it? In my experience it is the able bodied white man who fears this awareness above all. I know, too, that a requirement for being with the man I love, is this awareness.

I don’t talk about this often, but, some of the exploitation of the disabled that we see includes the cost of being disabled. It is very expensive, especially when the insurance companies don’t want to cover the cost of a wheelchair until you cannot leave your house, and then you still may not qualify for the one you actually need. if you need a bathchair, it is almost impossible to get a prescription for it, where we live. The cost increases as the economy makes money tighter.

What is my fiance doing to try and bring equality to the playing field? He is using his skills with repairing wheelchairs (he has repaired mine when the manufacturer failed) to try and help. He charges cost of parts, because we have to in order to eat, and a loaf of a specific gluten free bread or two dollars per hour, which has so far been used to buy a single loaf of gluten free bread. This fee is even negotiable. It is an expression of privilege that he CAN negotiate yet, it is also something that he wants to do to help people who may “lose their legs” and not be able to get their wheelchair repaired. I live with a man who knows his privilege. Yes, he is still learning about it but, the fact that he is willing to take that journey is by itself a fantastic thing that is the truest show of love he can offer me.

For more reading about privilege, I recommend checking out two places out of the thousands that you could check first. Start with a peak at http://www.womanist-musings.com/ followed up by http://thewhatifgirl.wordpress.com/. Renne, the proprietor of Womanist Musings is a wonderful writer, who has a life long experience with privilege. I find her writing more direct, and often much more clear about what privilege is. She also often reports on news you will not find elsewhere. The What if Girl has recently begun to discover her privilege and is exploring that. On top of this, she is also a fun read. I enjoy both of their blogs daily. You can find further resources at their sites, if you do not enjoy their writing specifically.

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