Pumpkin Pie (Trigger Warning)

a cat with silver fur, black stripes, has wide eyes and is being fed a bite of pumpkin pie

Not how thanksgiving looks inside my head

Pumpkin pie, soft, creamy, and since mine is crustless just a wad of soothing and cold chewiness. The scent trickles into my mouth to tease at me, and is the only Thanksgiving day food I can eat without becoming ill. Mashed potatoes are also fine but must be different than the recipes from my family dinners. No gravy, cheese, and almost always something in the food. Turkey, I can barely type the word. I can barely say the word. I will not eat it. I have been forced to by people using that vulnerability against me and I react to it with a mental allergic response. It is not somatic but the PTSD triggers hard and fast.

This is what I expect of Thanksgiving.

Yesterday I remembered something that has given me a sense of relief. Today as I continue to process the revelations I am left staring down the barrel of gender identity issues. I have had gender identity challenges my entire life. They base in my being autistic and as many other autistic women face challenges of being accused of decidedly unfeminine behavior so have I. There is a root with in the numerous and enduring sexual abuse that has dominated my life and was the end all be all of my childhood. From being prostituted to ministers and the supposed holiest people I know at the age of three and raped by my father to the rape at gun point by a high school boy who didn’t seem to understand this was why I stabbed him with a fork at school when he put his hand on my shoulder. I once tried to cut off my breasts to become a boy, and I have never really appreciated my femininity.I am aware there is more to this, including the fact that I am intersexed physically. I have testicles AND ovaries. Maybe if my mother had eaten, I would have been a male child. Maybe not. I do not consider myself to be of one gender in a sense but I am either feeling male or female.

I have spent years keeping this a secret, and in public I might still. Yet I am thinking this doesn’t matter. My carer knows. My best friend knows. My sister of choice knows. I know. To me this is who matters. I dress according to the way I feel, and even my male side is prone to wearing dark red lipstick. It feels sexy. I have fought and clawed my way through life trying to exist, and I have been told repeatedly that girls just don’t fight back. It is a fiction in a bad life time movie that women can ever do damage, we are eternal victims.

It wasn’t JUST the media that sent me this message. Nor was it subtle. It is my nature to fight back when I am in danger. I have very good survival skills. I am fully capable of killing you if you try to kill me. I won’t murder you but I won’t let you murder me. This has been unequivocally a part of who I am and I have wondered if when I was raped for the entirety of Thanksgiving weekend, so Wednesday night on through a Sunday night, when I was beaten and when the fragmented memories didn’t match the normal abuse patterns… did I even try to fight back?

Therapists told me no. If I had tried to fight back then he would have killed me. Except he thought he did and I have very real memories of meeting Osiris the god of the dead in Egyptian Mythology and having him put me back in my body and ordering me to live. I have marks on my chest that match where his hands were. My father wanted me to be dead, and did not try CPR. He thought I was dead. I don’t know about pulse checking and I am very aware that this could be a response to the very serious trauma to my brain from being bludgeoned with a gun, but I was left for dead.

My mother, who a child loves and believes on pretty much anything until Mother proves to be a person. No matter the health of relationship good or bad, Mothers do happen to be humans and thus the teenager occurs. Yes, my mother spent my entire life telling me that we don’t fight back in my family. The men are the abusers and the women in my family are there to be hit. She has said less of this to my baby sister but the message still is there. Women don’t fight back.

I have had mental hospital doctors torture me over my fighting back, I fought them and yet I was not allowed to have fought back against my father when I was alone. My agency was denied as children don’t fight back unless they are penis bearers. My father made it clear that if we fought back we would die but there are other memories of me fighting back. My siblings sometimes declared their hatred of me because my morals got us into a world of literal hurt. Then again they also wanted me to lie and I am still very bad at that.

When I was somewhere between 11-13 and was raped by someone else and I did fight back the police told me they wouldn’t let the boy press charges. I took a bit of rebar to his head, his father’s car, his house and let his dog go (never came back). I was willing to kill him for what he did to me and yet again, the police told me that women just aren’t allowed.

The media does this too. In movies it is extremely rare for a woman to fight back unless she was already a victim with years of self defense, hiding in terror and her abuser finds her and then she either kills him, takes him back and tricks him, or is rescued by the new romance in her life. Not just life time folks but block buster films. It is never with in the intial attack that a woman fights back. In horror movies, the attacks come in waves and it is finally after a breaking point, or the loss of all of the human shields that the female fights back and often still dies. Running away is good, as happens in horror movies with the cliched fall so the bad man can still get you. This is an acceptable reaction and is something I approve of, just don’t trip.

It is the female who is unfeminine in movies that is the villain. Either a caricature of a woman with sexual appetites such as Famke Jansen’s role in a James Bond movie or a woman who is something ugly, othered or is somehow defective. These are our female villains. Any villainous who is beautiful tends to not be acting under her own charms or supposedly it is more scary for a waifish beauty to be bad. Again, by being beautiful she is supposed to subvert the norms of who is acceptable with in a violent situation.

Women become their traumas. This is the other message I have struggled with my entire life. I was reduced not to a bad childhood but this single moment in a trauma filled life. None of my traumas are my identity even if they chipped some of the facets of my personality or left scars on me that changed the outcome of my personal growth to this point. The good moments in my life had just as much impact and I am the result of everything I have thought, read, heard, and learned. Every person I met, every person I did not meet. Every bit of media I have heard. It is not my trauma that makes me who I am. The Brave One, the entire premise of the film, which I linked above for my example, is that the woman is just her trauma.

This is a perception that removes the humanity from She Who Fights Back. You are no longer human but you are Rape. You are not actually a Woman, therefore it’s okay once more for you to be violent. There must be something wrong with you if you are a woman who fights back, this is the pervasive message I have been living with. There have been years I nearly killed myself over the simple fact that I did not fight back. I could not live with the idea that I did not, even as a small child, try to get away.

I remember when I first began to wonder why I didn’t fight back, it was after I was told by a therapist I would be lying if I claimed I had. I sat there quietly for the rest of our session, I was in a mental hospital at the time. The first time. I watched her face and I wondered if she had ever been hurt too, and if she had fought back. She had long plastic nails that she was tapping on her clipboard. I felt like she was angry at me, and my more experienced interpretation of her expression still reads anger. She went from someone I could talk with to a cold wall of rage when I asked about trying to get away or maybe hitting him back. This was just a few months after and I still had pain in my shoulders that radiated from the underside of the joint, and my hands were still swollen. In fact my hands have never fully recovered from the kick of the gun and my shoulder dislocations started then. We had fired guns before as a family, that wasn’t my first time but I never liked it because of the pain and the loudness.

Even as I am writing this I am playing in my mind the moment I picked up the gun. There was no hesitation. Something again that movies show. Women always hesitate with weapons. Men sometimes do, but they have the option of not. I pointed it at him. I remember his face. His eyes betrayed his shock, surprise, and then anger. I pulled the trigger. He didn’t get to mock me first, he didn’t get any lines out like the cliche, “You won’t do it.” He had lunged for me and I fired the gun until the bullets ran out. I have another new fragment but it is like a single frame of video. I see him in it with a police officer, but everything is hazy, I am just aware he is convincing them that nothing is wrong. This is new too, but I had never expected if the police came that they would rescue me. I learned that well before 1992. I just realized it couldn’t be 93, because my brother wasn’t born until AFTER this incident, I was off by a year.

So I have been fighting this for longer than I thought. I have found the most painful idea in my life was that I would just let him hurt me. This is of course not what happened, and no victim EVER lets their abuser hurt them. Even if you cannot or do not fight back, you did not give him permission. My personal battle was learning this. Fighting back is pivotal in my mind as something important. Even if you don’t win, you must try.

I know as an adult fighting back entails more than shooting or stabbing someone. It can be the moment you open the door and smell someone’s pumpkin pie and think “I am free”. Even if that is not true that little moment can give you a hint of the truth for years. The shifted association of foods during Thanksgiving from being all disgusting and triggering based on being raped, force-fed and torn apart with food as the supposed reason I deserved to be raped and beaten even pumpkin pie has confused me. Why was that pie safe? I still can’t eat my mother’s version of mashed potatoes. My father didn’t like green beans so those were safe until the allergies happened but the pie has been as much of a mystery to me as my wondering who I used to be.

I was not reborn in that moment after all, the idea was just a way of coping with the blatant lies I was told about who I was allowed to be. It is amazing to me how many people, in the name of supposed survival, reject the idea that women can be strong at all ages. This has effected my writing, my game play and what I could do. This is not trivial in any way shape or form. The core of who I was did not break, and that is important. My spirit never broke, and who I am is essentially the same on the base level as who I was before. This means perhaps I did not really lose my innocence but instead it was hidden away, so I could survive.

I do not cry much but I am crying now. How can I not cry for I know there are other little girls, women, people in between the male and female who wonder if they fought back. Who are told every day that this is an impossibility. Children do not have the knowledge yet to think critically about if people are lying, this is a skill we learn as we grow. A facet of being nuerodiverse in this world, and everyone fits in there somewhere, is that people learn these skills at different rates. The ability to critically assess a situation or the media is something that must be taught or it must be learned. Not everyone is capable of this and children have to learn from somewhere.

I am left questioning the validity of mental health for women, children, and anyone with chronic pain or PTSD. How can so many therapists male and female believe that women just don’t think of fighting back? Making self defense a taboo or something that is only allowed after a violation is incredibly dangerous. This is a part of the forbidden dialogue of rape itself. We are warned to not talk about rape as survivors. Victims may be unable to do so and a part of this is, even at the age of eight it was hinted that I deserved to be raped. Was eight year old me just so sexy she deserved it? That’s what I have been told. I also came forward with in the statute of limitations and because my father raped me I was told that my case just wasn’t worth the District Attourney’s time. They beleived me. They just didn’t care because I was a little girl. I have never forgotten being told I am not enough of a person, that wasn’t the first time but that was the moment I lost faith in the world itself and knew I stand alone.

Except I do not stand alone. Of all the lies that came out of this worst trauma it was the lie that I was somehow the worst female in the world, worst at femininity, worst at self defense, worst at being loved and that I was alone and no one else would know what it was to want to die, to suffer, or to fear. I was defective. I do not want to kill myself today, and this is the first thanksgiving in a very long time.

I am afraid for the children of this world. The messages that are being taught, the things that even adult women fetishize such as Twilight with its codependant pedophilic necrophiliac abusive manipulative beastiality domestic violence women stay in the kitchen marry for sex and all the other crap that Twilight is REALLY about underneath the sparkling vampires… these messages are the normal for our children not the exception.

Victory!

Today there was a great Victory. Not just for me but for others with animals that are their helpmates. Service animals have always been controversial with in the doctor’s office. I have had to change doctors a few times given the responses, some places just refuse to accommodate your needs and when asked they would rather be reported for an ADA violation than bothering with reasonable accommodation. Today after my appointment I was told I couldn’t bring my service cat back in. I asked to speak to the person who made the decision and pulled out my well worn copy of the law. I realized this copy is the one I used last time a doctor’s office discriminated immediately, there was highlighting on the portions about medical offices.

I asked the why, and I was told something new. This office does allergy shots and the risk of exposure for other patients is a concern. I asked if we could compromise which startled the office manager. It actually made her freeze her eyes wide with shock. Compromise? She asked what I would suggest so using the ADA as an outline I pointed out that I sometimes cannot even get out the door without her, but I do not want others sick. Sprite will wear her most covering outfit when we go in and I will call in advance so I can go straight into the office where I will see my doctor. This was our compromise. This allows me to have my needs met but does not infringe on the rights of others.

I expected a huge battle, but instead I was given victory. I left a copy of the law with the office, and explained what each part meant to the office manager as well. She hadn’t really ever bothered learning the ADA laws and therefore was unaware she had been about to violate my rights. I did remind her ignorance is never a viable reason in the court room, but is instead the fool’s gambit. I said it as nicely as I could of course. Victory, glorious victory. I feel more secure going to the office now, I feel respected, I feel human, and I feel alive.

In other news, I started with my newest caregiver today. The previous person was so great but that partnership is at an end. She has moved on to another client who speaks her language fluently, so her needs are being met. The new caregiver and William are already attached, and she is going to see if she can take him home. William may have a home. She understands his needs, and is willing to make the commitment. All feels right in the world, though it is a bit rainy today. Oh well, it couldn’t be a perfect day… that might be asking just a bit too much!

Oh, and if you want some great audio entertainment… check out Pendant Audio. They do radio shows! I know that not everyone is into this sort of thing… yet their work is really high quality. I am currently catching up on my Earth-P radio listening. The shows are short and make great waiting room time killers for those days when you just can’t read.

The Generic Title that Misses the Feeling

How can I title this blog post? There is no title sufficient for what it is that I am getting to write about. I am home. I am free. I am safe.  No, it is not perfect but a perfect life was not what I pursued. A safe home was. I am sitting on my couch, in my living room, looking at my cats and the art on my walls and all I feel is this burning sensation that is a mixture of relief, joy, and grief.

I grieve for what was lost. The sanctity of love itself is no longer something I can cherish. I may find it again but I will never truly heal from the betrayal of my heart. In fact, this betrayal has given me new layers to my PTSD. Simple things, as those of you who have PTSD know, can trigger it and I must learn my new triggers. Foam Cups. They make me curl into myself and want to scream. I know the reason but that doesn’t make it any better. Time sheets. This one is a problem as I cannot escape time sheets even though I can escape foam cups. I will adapt, I will heal, and I will grow.

I do not know how to explain it but the grief shrinks by the second. William has not run into a wall once here. He did attack the cable guy, who rolled the attack off without harming William and with a smile. I really had a most amazing cable guy. He was patient, he didn’t make me feel unsafe, and the cats response to him was something he found amusing instead of upsetting. He even moved a piece of furniture so it was out of my way. Not his job, he just wanted to.

I have my ramp already too. The last place fought me tooth and nail and refused to put it in. They won, as far as the ramp goes. Little do they know that there will still be an investigation by the Fair Housing people. I may be moved but the investigation will reveal much. The ramp was put in last night, and this means I can go out and in. Right now using the manual chair is hard but it is freedom. There is so much to say. I spent the last week without anything to do, my mind is in a frenzy to be used for more than imagination and organization.

I even dreamed nonsense happy dreams. No nightmares. I actually slept more than five hours, despite my bed not making the trip in one piece. I have crashed on the couch and I do mean crashed. Until two days ago the instant I was alone I would fall asleep. I am still exhausted, the bone deep type that seeps into your marrow and leaves you loathing the waking world for having energy. My bed will be put up tonight. My friend M replaced the mold filled mattress and broken bits, my mother is bringing some strong young people with her and they will fix it.

My mother has come through for me, in such a way that it surprises me. I wonder now if the Zillas our mutual attempts to communicate, or if I am setting myself up for heart break. I think it is both. I cannot however turn down much needed help. Nor will I. My mother’s own trials continue and I can help her if she will allow it. There are specific ways too. I have not fought my last battle either, the place I am living may have fair housing violations, though I managed to get what I needed. If there is discrimination it is based on Race, and I suspect this has been confirmed by my needs being met and others who happen to be another color being denied. It is sad, but, I am the ally of the truth. The truth will come forth, and that is the best that can happen.

I am bouncing from topic to topic again, my poor mother didn’t believe me about the mold inside my waterbed, and her work crew tried to siphon out the water, and now one of their number who sucked that moldy water into his mouth is very sick. I feel sad for him but I am surprised that there is no guilt. I did tell them so. They wound up dragging the mattress outside and cut it open to find it was worse than what I had suspected. I wasn’t there for that but each of them was made sick by the smell. My new water-bed is going to be treated with care, so that it lasts forever. The mattress isn’t gold this time either but is green. I look forward to sleeping on it. No pressure on my body just the softness of a warm cloud. That’s what a good water-bed feels like to me, my pain may even vanish for the first few nights. Perhaps it will vanish forever, as the bed will not harden with mold. The mold had almost burst the other mattress, it was that bad.

I am eating real food too, not just making ends meet. My foodstamps card arrives any day now, perhaps even Monday. My mom brought me Bacon when she heard me mention how that was the first thing I would buy, so now, I am free. As my house comes together I find that my sense of tension is receding, more so now that I have an outlet for my mind. That was a slow torture, I tried to hold it back but when my book reader broke, I was suddenly trapped with just a cellphone for the world. Still, most of what helped was the fact that I could sit outside. No sunshade, a bit risky for my health but, I needed some sun. It’s been five months since I could just be outside without an excuse or worse was trapped exclusively inside.

My mom promised to help me get my garden set up in the Spring. My rosebush and tree need some love, but they will be well tended. I am also going to grow my own strawberries and I was considering pansies. There is much to do before Spring is here but I can dream about it, little flowers all in a bright display right there just for me.

Too this is the start of preparations for Halloween. Today I bought shoes for Winter, I found an amazing two pairs of shoes that fit and then went to the Dollar Tree, a true dollar store, that carries the same stuff as Walmart. There I bought a few decorations for my favorite Holiday. My faith also allows for Halloween to be a very special day. I am going as Snow White. There will be pictures. I can also get my corset now that I am moved, and curtains. I also have enough room in my living room and bedroom for more art. I am going to someday get Nene Thomas’ art for my home. She’s my favorite Artist, I found her work when I was younger and was hooked. I have other favorites but she is the foremost, and her work is also not all that expensive. Some artists want 100 dollars for a print, but I can get small prints for five or ten dollars. How smashing is that? Something that if I budget wisely I can afford.

I have an electric bill now too. I have bills. I cannot hold back the glee that bubbles in me. I have bills! I have almost everything I need and there is little that I want truly. My wishlists already seem outdated and overly full. I need a blender, I should get a recliner that helps me stand (replacing my couch that broke last night) and maybe another book shelf. That is it, excluding wheelchairs.

I even have a big screen TV, it was here when I moved in. I found a windchime in my boxes of stuff too, one I thought long broken, and so I even have music in the wind. There is so much that I am getting rid of, I may be able to cover the blender after that sale.

I will write more later, I have to write a How To with caregivers, as there is some information there. I am changing agencies, and that will be the source of more knowledge. K my wonderful caregiver and I exited the honeymoon period. The change of Agencies shouldn’t cause me to lose her however. We worked out the really minor issues and the main stress with having a caregiver has to do with the paperwork and scheduling. That means I can leave that over with someone else and be much calmer.

Now I plant the seeds in my soul, for my soul and heart are entering a glorious spring after their long winter. The seeds will grow into happiness, joy, and a further understanding. I will share the fruits that come from these with the world as I have shared all I am and know. The changes that he wrought will only make me stronger and my inner garden more beautiful.

A Breath of Panic (Trigger Warning)

It came as a small scratching at the door. The wind and rain pounding on the outside making it easy to ignore. The cats sat staring at the closed curtains, each bristling. Then came the howls of the neighbor’s dog. It was snarling with rage. Even still, it could’ve been ignored. It was an eventful storm, loud and showing the wrath of nature. Nature screaming at the impending violation of his presence? The words brought me to pause, literally as I was watching a movie. “Oh (expletive) the door is locked.”

Immediately I sprang into action, my immobile body trapping me with the slowness that comes with adrenaline. My hands shook as I dialed first the Security office at the apartment, then the police. Someone had tried to enter. I couldn’t tell if it was my Ex. I knew it was. The cats ignore most strangers but fear him. In fact every day I still find new shades of things he has done. Today I learned that William answers to curse words.

The operator for 911 asked me to stay on the line. I appreciated that, I felt like I was going to pass out from panic. I didn’t tell her. If I said it, it acknowledged the part of me that had to wait. She had answered the phone before and remembered my voice, and that alone was comfort. Another bang came, and I heard the van driving up to the front. There were some thuds… then he was inside. It lasted for a split second, I never even saw him. The Security officer was there, and the police came as quickly as they could. The storm slowed them. I listened to the howl and watched my cats rage.

What happened? Using his key he broke into my storage unit, then he forced the door to open with brute force. The cats hid, and I risked pain by rolling off of my spot and crawling behind the wall space. I didn’t cry. I will probably when I lay down. I can’t yet. Everything is still to fresh. It’s been five hours and I just sit here. I finished my movie, I called people.

There is of course more to this story, but, he came again. I had just started to feel safe. The police told me I may not open my windows or doors, they will be watching the apartment as they can but any other crisis will pull them away. This will last until I move. I know too, now that there are two warrants for his arrest. I asked if I could write about that, and they said “Sure. If he reads it he may turn himself in, which will make his punishment much less.”

He did get away with some things. He took a few of my wheelchair accessories but not the wheelchair. I had started to feel safe. The complacency of having a moving date in mind and being about to pay my deposit via the help of my friend M, it left me feeling safe. I am still imagining. I am not just staring at the walls but I am browsing online stores and imagining what items may look like in my home and my yard.

I am (expletive) terrified. I should be. The idiot (yes I am just going to call him what he seems to be) first broke into the wrong apartment. The neighbor’s dog went after his balls and he may or may not have a serious groin injury. The neighbor did not see his face but was fairly certain it was him. They also called the police. Other neighbors heard the barking and looked outside. A total of six different neighbors and myself called in but he still escaped.

I do feel safer knowing that they didn’t ignore it. I have some balls I got for free with a bag of catfood, I am not sure why they were giving dog toys away but, I had been intending to give them to a service dog I know. Now they will be one less. The officer hand delivered the tennis ball for me, because that dog saved my life. I would’ve ignored it. I’ve felt like a crazy woman jumping at every sound.

It has worn me down so far, that I cannot even comprehend saftey. It feels like this distant dream. The concept that I could be safe? It’s a sweet torture. I can’t stop imagining it but now it feels like the worst idea ever. I do not want to sleep in my bed, it smells bad and I am afraid, one of the neighbors reported a gun.

Because he entered the storage unit and only he and I have a key, it was deemed beyond a reasonable doubt that he broke in. The police are going to make my landlord fix my door first thing in the morning, and security is parked out front. I know they will protect me but, I cannot stop the fear. None the less, I know I did the right thing. The police were impressed with my ability to protect myself. I will be feeling the effects for days.

In fact I never would have known he had entered the storage shed if I had not leaned on the door to keep my balance. I felt it shift and we all heard the lock click. I checked because they suspected he was hiding in side, but no such luck.

I do know this will help me with my restraining order. I go to court Wednesday at 9:45 AM. If he reads this maybe he will show up. He can tell them it’s all in my head.

I keep replaying the moment where he penetrated my home, there was a crackling sound, the door still closes now but he forced the locking mechanism through the wood, which was already damaged enough it looks whole. I felt myself stop, the cats were bolting away so I rolled and felt the most pain I have in a long time. I know nothing is broken that wasn’t before, and I will be bruised but, if I had been in his line of sight I might be dead.

I can’t wait to move. The good news is my friend who is helping me with the rent and deposit this month, so I can get out of Dodge has also replaced my waterbed mattress and has given me bedding. This means when I move I will sleep that first night in a bed that is full of clean instead of the decrepit filfth. I may even leave the mold filled waterbed here with the bags of his belongings. I no longer plan to try returning them to him. I will abandon it.

If you are wondering how bad the bed is, let me just say that the smell fills the entire house, and both K and myself have been taking benedryl so that we can breathe, the cats too. When I lay down it crunches, and sometimes it stabs me hard enough I can’t find a spot to rest on. I have no bedding as it is, and the poor man wound up having to replace everything except my bed frame. My ex found a way to ruin everything he could.

I will eventually post the wishlists here, though I may hide my really outlandish jewelry wishlist from you all. I decided to just make a list of anything pretty I may someday want, ignoring the fact most of it is over priced and I would never buy it.

Thank you all again for your support. I want to use this moment to draw your attention to a blog post that reminded me that this would’ve been way better if I wasn’t disabled. I wouldn’t have to fight for any police response. Tonight has been the major exception and not the rule. I had probably the best officer on the entire APD show up. So, here it is. This too has a trigger warning but it’s worth it.

The Cliche of Anger

I am tired, in massive pain, and yet I still am riding on the waves of fulfillment. I worked an entire week straight. I am taking a few more days to get back to my standard however, and reminded myself why I do not work in a traditional manner. I would have been fired today for being unable to wear standard clothing for one, and my attitude for another. Every action I take, every interaction I am bogged down by references to the past, lessons, and reminders. I hear my mother’s voice most clearly, and that is not something I welcome. I want to be an individual not the product of my family.

I wasn’t going to post until tomorrow but I was reading a few pages over at Womanist Musings. The proprietor of Womanist Musings has recently outed herself as being amid the disabled. She is beginning to run into the challenges of being suddenly unwelcome, invisible, and at times hated for merely existing. Today one of the commenters told her that she should start a civil rights movement, ignoring the fact that the disabled community has been pulling for equal rights for as long as other civil rights movements have been in effect. Before we go on, I want to remind you my dear reader that every single civil rights movement hasn’t ended, and that the fight for equality is on going no matter what your ism is. This reader seemed to think that a few protests fix everything.

This ignores the protests in New York, the individuals who do sacrifice their energy and at times sanity to try and force businesses to comply with the laws, and it ignores the fact that there are those who came before you and I. This is an erasure of our history. I responded with snideness and sarcasm, ignoring for the few moments it took to suggest a hacksaw so she could remove her legs as “easily” as I can get off of my scooter, the voice of my mother. “All disabled people are angry, they think they have rights.” I am aware that it is the events of today that shape the memories that seem to nitpick at us. Before I was disabled my sexuality was most often the harbinger of a Mommy Memory. “Bisexuals are selfish, they just want to have sex with as many people as possible.” Every time I went to flirt with a woman or a man, I heard something like that.

The myth of anger is just that, a myth. It erases the happy moments with friends and family, it erases the moments where competent and open minded people realize that everyone has rights. The myth of anger is often used to subjugate. Stop being angry, so that I can continue to oppress you. That is what I hear. The expectation that an entire group of people must never feel one emotion is ridiculous yet this is foisted on women of color, the disabled, homosexuals, and countless other oppressed groups, all to control us. Anger is forbidden.

Many times when I am smiling, I am told, “This inaccessible area will be fixed soon, we swear!” The tone is always frantic, that hint of “Oh god she will be mad that we haven’t done this yet.” It doesn’t matter that I am smiling and just nod and say, “Great, thanks for letting me know.” The fear of my anger, which is some how more toxic than their anger or fear is there. I still don’t understand it, but, I see this often. The times when I am angry, I am also not heard. It’s enough for me to want to go back to trying to be Super Cripple, but, I won’t do that.

My anger is valid. Your anger is valid. Anger is not a reason to oppress, discriminate, or subjugate. Anger is not an excuse to not build the ramp in an accessible manner, and anger is not an excuse to try to “just get rid of” someone. I am tired today, and I am trying to seem reasonable. My mind is far from reasonable. I am in truth alone, and am having a small tantrum every time I need to get up to move. My fiance forgot to feed the cats, which merited an hour of sitting there whining about how I wasn’t sure if I could do it, I can’t bend, and their bowls are on the floor.

It wasn’t anger that had me make a really big mess trying to feed them either. That was love. They were hungry so I fed them, without bending. (Sorry honey, but the kitties have to eat too!) It won’t be anger that I let him know he forgot either, but amusement. Every emotion that I have is not anger. The lessons that our parents teach us, may shape what we see but it is the choice that I made in my first experience with disability as an adult that showed me otherwise. I chose to not see anger.

It’s really that simple. Demeaning an entire group of people does cause anger. If you fear our anger so much, stop discriminating. If you come near me right this second and discriminate I will show you anger, but I won’t run you down with my scooter. That’d hurt me too, and you just aren’t worth my time or pain.

To my friends, allies, and fellow disabled persons, don’t forget that every moment that we are alive is the revolution for our people. Every time we are seen out of our homes, with our assistance equipment, service animals, and even having issues, this is our revolution. VIVA LA REVOLUCION! Free my people!

The Chronic Life Style

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Author’s Note:

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

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

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

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

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

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

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

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

Measles, Mumps, and Rubella

There is this claim floating around the world, people are passionate about it. Autism is caused by vaccinations. I disagree. I know this makes me a target. There are people targeting advocates that do not want to cure Autism. I can’t cure myself. I am not a problem, I am just different. I almost didn’t write this because I am very afraid of whack jobs. I come from a family of them.

I am Autistic. I am a woman. I also did not get vaccinated when I was a baby, or at least not the MMR Vaccine. I had Measles. I had Mumps. I also had Rubella. I had each one. I remember little about the measles, I barely remember much aside from my face hurting about the mumps. I was a bit older when I had Rubella and I remember my skin burning. I didn’t have a clue about the dangers I was facing. More reasons that I am angry with the parents in my life.

I am certain that Autism has been around for as long as people have been breeding. I say this because to me, the way I think is perfectly natural. You may not get from my point A to MY point B. It may be point Z for you. For me it is what is logical. I am not a machine. I am not a robot. I am capable of emotion and love. I dislike the proverbial chick flick because it plays on emotions cheaply. I love action movies, because I can cry when the hero gets blown up but he gets up and keeps fighting at the end.

I am an adult who was recently diagnosed with Autism. I am still learning what it means. I have learned that it explains a lot of what makes me who I am, little quirks that I was punished for. Violent punishments. I wonder too, if my mother’s improper diet, diseased body (She has lupus and it has never been treated), and my genetic history with so many mental health issues contributed. I know the violence in my home helped me mask it. I can make eye contact without appearing to flinch. I can also steal a car, and lie to your face about it. This doesn’t mean I want to do either, or will do either now that I know I do not have to hurt myself.

Still, at times I question the validity of my diagnosis, when I hear these claims. Only boys can be Autistic. Only children who had their vaccinations can be Autistic. These are fallacies. Autism isn’t a disease. It is something that creates people like Albert Einstein. I do not know if he was Autistic but, I have often believed he showed signs of what I know Autism to be.

I feel fear when I hear talk of a cure. I feel frustration when I see that all of the care and support vanishes completely once an Autistic person reaches adulthood. I feel loneliness when I am singled out by my disabilities and am then told that Autism makes me inhuman. All of this is wrong. As you advocate for yourselves and others, you must remember that there is no true inhumanity, except those that refuse to see that genocide is imminent. I understand that living with any non standard deviation is frustrating. I do this daily.

I am so nonstandard I cannot have a cup of coffee. It makes me faint. I am so nonstandard I cannot go into a burger joint without risking death. I am so nonstandard I think it is wrong that people are discriminated against for every possible thing. There is a lot of discrimination with in the disabled community. There are people who use walkers and look down on wheelchair users, there are wheelchair users who think that fat wheelchair users are somehow less than. Every chance we get, we need to not pick at the little things but band together.

I will always bear the scars of my childhood, and I display them here so that someone else knows they are not alone. For all of the Autistic persons who read these words, no matter what you are told the cause of Autism is, what you believe it is, or what you know about yourself. I accept you, I do not want to cure you. You are exactly who you should be and you are beautiful.

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