The Last Post

Textual Fury is now an Archive. Below is the last post written here.


Something I have noticed about abuse is, when you speak out about it invariably people will defend the stalker, rapist, or abuser. They do not know this person, and they may know the victim but there is something ingrained into the world that has trained us that anyone speaking up about abuse is lying. Its fascinating to me, on several levels. In part this fascination exists because it shows how widespread and systemic abuse is. This is perhaps where some people will think this is me talking rape culture, but rape culture is actually only a facet of the problem.

One of the first steps an abuser takes is gaining power over their victim, by making certain their victim feels fear. This is done by threats, sometimes violence, and it encompasses all you love. It can be a threat against your mother, father, siblings, pets, or other people you care for. The abuser can even be one of those people threatening themself. “I’ll kill myself if you go.” Especially with a parent this creates the false burden of responsibility on the victim. This act also includes the beginnings of erasure and silence. To protect yourself you must not talk about the abuse, because they will hurt you and whomever they threatened.

Sometimes this is true. Sometimes getting help, breaking those rules is costly. The most dangerous time to be abused is when you leave and when you get help. This is widely known for people who are leaving abusive spouses but what is less widely discussed is for children with abusive parents. The only acceptable victims in society are women being beaten, but never raped.

Why does acceptability matter? If its okay for me to admit I was beaten  by my husband but it isn’t okay for my step father to admit that he was beaten by many of his wives there is no room for him to ask for help. If it is only acceptable for children to be abused in certain forms, then there is no help for some of the most dangerous types of abuse. We do accept that sexual abuse occurs in this society but we deny at the same time the rights for aide to those victims and even children as young as I was when I took on an adult abuser and got him arrested, endured a trial, all of four or five? They have to prove that they weren’t ‘asking for it.’

There is no need to forgive or redeem your abuser. Often when breaking the rule of silence, which perpetuates even now that I am no longer being abused, people will ask me why I don’t just forgive my abusers. That isn’t my job. Forgiveness isn’t something you can just hand out on plates like cookies. Forgiveness is an act that one can only do for themself. I forgive myself, and sometimes struggle even after, for my mistakes. I made the mistake of emulating my abusers for a time in my teens, and I had to learn that this while not being okay doesn’t make ME a bad person. The line between the abuser and victim can be thin, and many victims become abusers to protect themselves. I did. I also learned another way, and it was far from easy. In doing so I learned why my abusers used Christianity as a cover. The easy get out of hell free card of saying “Well God I fucked up again, oops sorry.”

This is not how all Christians use the forgiveness they feel of their deity and in fact I learned the truth, for me, of Forgiveness from my friends who are very religious. It was in my quest to understand how they can believe in something that my experiences showed me the worst side of that they showed me how forgiveness works. I accept what I did wrong, I strive to change how I react, enact, and choose so that I do not repeat that mistake. I accept that I am still a person worthy of life? That is part of forgiveness. That relief when you realize you have survived can be forgiveness too.

You do not have to forgive anyone else. Its strange, counter to many of the vapid platitudes and cliche statements society throws out but many of those are things that enable abuse. “Everything happens for a reason.” “God wanted to put you on this path.” “God has a plan, this was just part of it.” “Forgive and Forget.”

Forgive and Forget to me is a most dangerous sentiment. If you forget your abuser’s actions you let them repeat them. Having a brain injury and spending years without knowing what happened? I became aware of how dangerous forgetting is. It isn’t inherently permission when it is not your choice but willfully ignoring the patterns that abuse takes can get you killed. Forgiving your abuser and looking away as they hurt others or yourself is not in fact healthy. All my life I was told to forgive and forget, up until my mother was hurt by a violent exhusband. Then? She was suddenly okay with not forgetting but still was hell bent on the world forgiving.

When other people require you to explain your abuse, they aren’t necessarily doing this to hurt you. Some people live without abuse. I cannot imagine that. I struggle to imagine happy family time. I get a bit of a headache trying really but I know it exists. My friends have often proven this to me, books have, it is just not something I have experienced first hand. Sometimes it is a case of the opposite extreme, where someone has little to no experience with abuse so they cannot fathom how your mother wanting to know how you are and ignoring your requests, which to them are odd, to be left alone is bad. They don’t know how stalking is bad, because the media has few examples of it not being a victim over reaction. They cannot know the fear that curls around you and pierces you because their experiences have none of that.

I admit fully I am jealous of these people. I admit that I am also happy for them. Its a strange combination and again it is another moment where the standards we are taught do not inherently line up. There are healthy forms of jealousy. I can be jealous of the small child who I see laughing and hugging their parents because I never had that, but my jealousy does not make me want to destroy it, I want more of it for them. Jealousy is only toxic when you let it be a reason to hurt others.

This blog has always been about breaking silence. That is why I am not deleting it. I have come to a decision that I put off for a while, trying less drastic things than wiping out my internet identity, my real life one too. I feel a strange peace with this now, which I did not feel before, but it is time. Textual Fury will remain as an archive, but I am not going to let myself feel that fear. I have begun the process of deleting my facebook, while retaining contact with the people who matter most to me. I have already destroyed my old email. This is the hardest one of all. I cannot say I will ever stop writing, but my growing silences over the years are related directly to stalking, abuse, and crappy health in that order. I am a survivor and so are many of you. So I am trusting myself. I am trusting that this is the right decision.

Deleting this blog would be part of the trend of silence. Instead I will write the rest of my novel, I will write another one, and another one. My silence cannot be bought. I am going to only get louder. I am grateful to you all for supporting me for the last few years, to the people who find this blog and find out they are not alone? I am happy for you too. I leave this blog up as a symbol of rebellion, a ringing bell, and because I love everyone in this world, and I want the best for them. It just cannot be at the cost of my own safety. This action doesn’t make me give up freedoms, by letting go I am gaining them and a sense of security. It is rarely both, and it is not easy.

Why Do People Kill Themselves? Answers on Suicide and Chronic Illness. (Trigger Warning)

In the wake of loss, that moment when the pain sails in and your heart shatters it is impossible to be ready to write, think, or even feel. Amber wraps around you and the world is crushing with the weuight of the agony. It is a detrimental tether that weighs us down to the dead. When the loss is a suicide iti s easy to be dragged  under, especially when your own pain, like the person you lost is endless. I have written many times about suicide. I have said over and over that I want you to be greedy and sieze life. Live despite the pain. I also know this is not easy. I have not hidden the fact that when I wake up I want to die. My dreams are not refuges from this but often are nightmares where the fear clings to me for days, little needles and waves of it running through me constantly. I am very tired. if this is all I can see, I am in danger of losing myself. Even thinking on it to write that I have tears burning my eyes. More pain as I am allergic to my own tears.

There is a reason why when someone close to you kills themself it becomes a greater likelihood that you will follow. It triggers a chain of pain awareness that can be suffocating. I am not really ready to write this but I live by certain rules, which are important to me. My rituals of evading consistent patterns despite how uncomfortable that is for me as an autist who needs habit, my firm morality about life and death. I do not think suicide is wrong but I also am a proud supporter of the Not Dead Yet Movement, because it is also not the solution that should be tried first, second, or even remotely before all options are exhausted. All options literally. Even if I had been a quadruplegic instead of a paraplegic I think I would feel the same.

In the last six months with in the Ehlers Danlos Syndrome community there has been a growing number of suicides, a recent one closer to the cusp of my soul than some of the others has me writing this. There have also been daily cries for help. I cannot always help but I try. Just as sometimes I have to ask friends to help me. The challenge of being chronically ill with a degenerative disorder that has symptoms described as “torterous pain” which is not a strong enough description and knowing that pain is only going to get worse is hope dies quickly. There is never enough energy, time, and even turning on or off a light, typing a word, eating or basic needs can fail to be met because you dislocate, rip, or even have your insides suddenly shred. Then the world only tolerates visible disabilities. As if somehow my wheelchair being in use instead of a regular chair changes the perception of what it is. Without crutches, canes, walkers and wheelchairs most disabilities ARE invisible. So there is a decided lack of empathy. A lot of people with chronic illnesses rage against cancer patients for a time. I am guilty of this too. Sometimes I get so frustrated because the world is coddling them. Then I remember that it is RIGHT to coddle sick people. I am envious because there is, outside of the world I clawed and carved and fought to create, no room for someone with a non curable, intreatable illness that will not kill you quickly. Chronic illness is a slow death.

I think that last paragraph is the most depressing thing I have ever written, and I write about horrible things often. The words cannot convey the depth of agony in the flesh. Sometimes I have to tell people I will suddenly be unavailable because my spine feels like it has fireants in it. I leave out that the fireants are biting each nerve fiber. That the bones are grinding. That the muscles are twisting in on themselves and I just cannot move anymore. Sometimes I vanish for allergic reactions. Those are painful too. My tongue is swollen to the point of rupture. A few places split. Hives are added to that. In order to eat I have to coat my tongue with orajel, which has diminished effect on someone like me. Ten minutes of numbness to eat. Sometimes the numbness never comes, just a terrible burning sensation. Sometimes I cannot communicate at all or eat. I go  hungry a lot, which only increases the pain. My jaw dislocates and slips around. I have cavities that are very visible and cannot find a dentist who can treat me. I suppose they call COULD treat me but they won’t. I am too fragile and complex. I look at the people with my conditions, many are not as broken as I am physically but many also are. Some survived t hings like I h ave which would leave wounds that never heal regardless of mutant collagen. I look at the women and men with these disorders who  have children. I do not wonder that at times we lose people. The struggle of my own body is enough, adding in children no matter how well loved creates a new set of challenges. Many parents feel guilt when they realize their children are suffering. Sometimes the children think that it is their fault their parents hurt too. This cannot be helped, but it too takes a toll. No parent or child wants to think they have hurt the other. With my experiences I do qualify that not all people who give genetic material to form a child are parents either. A parent loves and cares for their child at all costs. The issue there with something like Ehlers Danlos is that all costs can be deadly from the disorder alone, and the psychological toll.

Chronic illness also begets isolation. The internet set me free, I log into it and connect with people. I feel fufilled. Not everyone can achieve the same connected feeling online as offline however. Knowing I cannot go out I adapted my social world long before I knew why. I am lucky that a primal, formative need allows this for me. My autism perhaps saves me of the worst part of chronic illness. Isolation. Loneliness. People stop asking you to go and do things if you flake out. People presume it isn’t as  bad as it looks because the media and the culture that we live in hide illness, so if you do not look like a mutant freak of nature, wear a body cast, or otherwise seem sick you just are a faker. I  have had that many times. I have had people physically assault me to try and prove I was able bodied. I have had people threaten me, I  have had people give awards for achievements to everyone I worked with and leave me out of it even when I do just as much as they do,  because I am not socially acceptable by right of invisible illnesses. That was before I could not hide it. Even now I have people tell me when I am out to get up and walk, then I wouldn’t be fat. It doesn’t matter that I am ridiculously swollen and not actually as fat as I look. I am still fat therefore I must be faking. Television shows also only allow for disabled people to be the bad guy. We are the villains. We are the reason the world is such shit. We are the reason why taxes are too high and people cannot afford food. Not the actual people who  have sway and influence there. Nope, the disabled are at fault.

Some of us are also survivors of abuse, where our disability has made it impossible to escape. I lived that. I see it often in these groups and quite often the people who we lose are survivors of abuse or victims of on going abuse. Yes the thin line of victim and survivor does seem to be mere chronology. Survivor does not mean healed, over it, or never effected. I am sitting in t he start of what I call the Novembers. My annual run with debilitating PTSD. This year is already worse than the last few. I know why. I also cannot fix why today. I must just survive it anyway. Pain is my oldest companion. It is something I know inside and out. I can read people’s pain even if I am not always good with body language. I can tell a great deal about health just by watching people. I know when someone is faking pain, when they are like me and can take the pain. Pain changes how you breathe, sit and move. It breaks you. I have been broken.

This is why I reach out to people. I am always available if awake for emergency help. With all of the darkness I just shared it is a wonder no doubt that I am alive. I do wonder at this sometimes. Why did i get so lucky as to survive the horrors of my life? I fought for it. Fighting is not always simple, it is never easy, and sometimes the battle is quiet. Sometimes it is impossible to speak, so ou reach out without saying what is wrong. Sometimes you can go to people in a support group or trusted system and say, “I need help.” Sometimes help is not coming. I know that a lot of people with suicidal issues are afraid to ask for help due to the always available recent fuck ups by police in which they react wrongly to someone calling for help and kill them. This happens a lot just for being disabled. The terror is reasonable. Wanting to survive is not always enough to beat out being suicidal. Talking isn’t always enough. Trying matters however. I can understand why my friend killed herself all day. It does not ease her pain or mine.

What I talk to people about when they are suicidal are short term answers. Things that can relieve the pain enough so that they can survive. I cannot fix their pain but I can listen, I can problem solve, and I try to remind them to be selfish and greedy for life. I posted this as a facebook status after the most recent suicide. “I am greedy, I want people to be fulfilled and happy. I want to live long enough to see the changes I have pushed for in the world come through and the same for other advocates. I want to know what happens next int he story of human history. Sometimes that is ALL that gets me to push past the moments of pain. Be greedy with your reasons to live. Revel in them. Life is hard and for some of us pain is never going anywhere but that only makes me treasure what I can do more. All the no, can’t, pain, badness and horror makes me know just how worthy I am when Sprite cuddles me, when I get to go and do something simple to otherrs and fantastic. No one lives without pain. No one.” That is the core response for me to suicidal people. I am not that direct, I work it in slowly.

The first thing to do when someone asks for help is to listen, making sure they know you hear them. I do not contradict their pain, I do not tell them the very stupid and often damaging and deadly “That is a final solution to a temporary problem.” My pain is not temporary. I will have, when I die, lived every breath of my life in utter agony. SO that statement is condescending and stupid. It has no room in a real discussion. I try to not say anything that can be taken as disregard, dismissive. The second thing I do is I ask them what they have tried to solve the problem, if this is something that can be solved. If it cannot be solved then I skip ahead and look at reasons why enduring the agony is worth it. Life goals, dreams, children, pets. Small things add up. Often there relief in just being heard. Just knowing someone else hears you and understands you. That you are not crazy like that last doctor said, that the pain is not a fiction but dislocations fucking hurt. Why doctors seem to not grasp this over all confuses me given that if someone did not have a condition that caused constant dislocations they would grasp, in a heartbeat, that it is agonizing.

I cannot make this condition anything it isn’t. There is no real hope at this point for new treatments, for pain relief. Sometimes people have a history of addiction so even pain management medicines to lower the pain to survivable levels, which is what pain management really is not curing it or fixing it or removing it entirely, are impossible. We lose those people more often than those who get medical care that include pain treatment. The reality is that pain itself is toxic, it causes the release of hormones and damaging chemicals that in short term exposure are okay and help you survive but in long term toxify you. Most of the people who kill themselves in this world are not having needs met. Sometimes the needs are harder to grasp. The “perfect” honor student who must always perform and get good grades may not have a need met that is easily identified. Likely their need is help in understanding they do not have to be perfect. It could be other things. The pain patient without access to basic needs. The homeless person who just can’t figure out how to keep a house because their brain, body and society do not let them adapt and they do not know how to ask for help. The business man who fails at something and has a combination of stress so he just gives up. Except no one gives up slowly. The human brain is built to survive, it is a primal impulse. The amount of pain required to over ride our primal nature is significant. No one dies without a reason.

Why do people die? Why do people kill themselves? I suppose having the answers to these questions means I have an advantage over people who think there is no answer. There is no great unknown with death. I do not fear it. I am also not ready for it. People die because immortality would be an endless agony, our bodies wear out. Our minds wear out. People die so that life has meaning. If we never died we would have no reason to try. People kill themselves because of pain. The pain is not inherently understood by anyone else, as far as the victim sees. Yes victim. Be it of their own mind, bullying, disease… they are a victim of pain. The pain overrides hope. Nothing can fix it. Eternity is that moment of worst agony and you see it never ending. So you give in, you kill yourself because that pain is unbearable and it is never going away. Ever. The only way to end it is to die. It may hurt for a moment, just a bit more, but if you kill yourself it ends. Well…w e think it does. It may not. The pain also can get better with help. I have improved with therapy on the mental health things like PTSD. With pain meds that at least let me take a breath. The pain is still there but I have it managed, conquered even most days.

Pain blinds you to the reasons you want to fight. I am greedy. I have dreams and goals. I want to write my book, I want to sing. I want to out live some people. I want to be alive long enough to see an active gene therapy to treat my disorder for the next generation. We need to be alive to fight for things. I want to be alive to see the world tomorrow. Every day I plant seeds of change, growth, renewal. Every day I do something that may change the world. I do not know what change will occur, I can try and mold and shape it but if I am dead I will never know. Somedays that is all that pulls me out of pain. It has been two years and six months since I last really had to fight myself to stay alive. I count the days like an alcoholic in recovery might, because it matters. It has been seven yaers since I last gave in to the urge to binge or purge. It has been four years since I last tried to kill myself. It has been three years since I last hurt myself just to feel something else, to trip the endorphins that make pain better. I may slip again in the future. I may not. I  have to live and be greedy for life to get there.

People who survive a car accident, near death experience, cancer and treatable things always say they suddenly see life as something of value that is meant to be lived and savored. It is always presented in the most cliche manner. I find those stories grating because the implication is you must have beaten whatever is wrong in order to be greedy. You can read this and just care for someone with horrid things that they fight and still be greedy. There is no prerequisite to be hungry for life outside of being alive. So be alive. Be greedy. Be hungry. Curl up into the fetal position, scream, cry, then get up and fight for those goals. If you are dead you never achieve them. They do not have to be goals like winning a Nobel Prize. They can be goals as simple as seeing the next Avengers movie. Set something further down the timeline, small steps that are manageable to get there. One single step is all you need. Then after that worry about the next step. You may look up and realize you have achieved more than you ever dreamed possible. I do that every day.

Here are some resources for you if you need help:
Call the National Suicide Prevention Lifeline at 1-800-273-8255 (TTY:1-800-799-4TTY)
(In Australia, call Lifeline Australia at telephone: 13 11 14
Teenagers, call Covenant House NineLine, 1-800-999-9999
You should also be able to find a crisis hotline near you via googling or looking in the front of your phone book.
Ask for help in a support group. Facebook has a ton of support groups be they for things like Ehlers Danlos Syndrome or suicide crisis prevention, many other social networking sites do as well.

Additional resources:

The Missing

There are people who you will never forget. This is usually said about the momentary brush with that superstar, your parents, your family, and people who impact you. It is rarely said about victims, shadows and the fringes of society. Yet for me those people are ones I never forget.

Recently I had a day that was tinged with those frayed edges that politicians blame for all of the ills of the world. A woman who was homeless and most likely due to her mental illness threatening in one voice to kill  herself, the other voice begging for help. I saw her. I  heard her and I called for people who could help her. I will never stop wondering what the outcome for her was. I like to think she ended up in one of the rehab programs. Maybe she will end up a neighbor. I have seen her before but never close enough to hear her pleas. I was laying down to sleep, disoriented from the sort of nap that only comes with Chronic Illness. Exhaustion forced it and it leaves you groggy and hung over. I woke up from that fog as someone screamed. A woman in the night shouting for her god to save her. I do not know if that god heard her but I did. The scream was cut off, a male voice, then a cry revealing she had been stabbed. I called the police. I listened, fearful for her. 911 put me on hold, which is always a nightmarish sensation. Those seconds mattered. Tick tick tick, I felt her life ending. Luckily they picked up and with in a half an hour, which could be fatal still, she was in an ambulance that wailed into the night carrying her to what I hope is freedom from her terror.

I will always think of these women and wonder. I will also always think of the homelessman who I used to feed when I could and often sent Maxine out with water for him. I gave one of my waterbottles over so he could stay hydrated. He disappeared after turning up burned from the sun, obviously on the edge of death. This was before the hottest days.

I do not know who all reads this blog, which is why I am writing this. I have been the unseen fringe, the homeless, the abused, the victim, bleeding, starving dying. People did help me. I will always think of them too. This is a once a day thing. I can only hope that they help others. I think they will. So who is it you think of? Who do you remember? Who is in the fringe? Are they missing? Are you missing to people?

I know I am missing for some lives, but I must be to survive. I will always wonder about the stories of those I see and I do wonder about those who I have disappaered on. It is what must be done at times. So I suppose this is my hello, a goodbye that was never said and a pondering on the future. I could have been those women, after all. Someday they may end up reading this. I heard you and saw you, you matter. I keep saying these words to people because everyone needs them. Make someone unseen seen, show them they are alive and matter.

Environmental Adaptation: EDS, Pain, and Auroras.

I have been thinking a lot about the side effects of being stuck in bed, in the house, and limited activity outside. This is not new, though it is more acute with the recent surgery and my body being slow to get over it. My nature is to push and rush, and I am trying a new route. Not forcing myself to deal with extra pain by rushing my body. Yet I am not depressed, which is something that surprises me when it creeps into my subconscious. I am happy. So what has lead to this?

First and foremost proper pain management. I see a lot of depression tied in with hurting. I still have days, like today, when I cannot move because the agony in my body is so bad that not even morphine helps. Which is shitty. It has been raining and so I have been writhing. Pain management for me entails the way my bed is made, there is a lot of cushion before the pressure pad, which softens the mattress. There are pillows to support my joints. The bed adjusts and positions me so I can actually get comfortable. I sleep in this bed, not a few disjointed hours with four when I give up. Six hours with two interruptions. That sounds like terrible sleep to most people but it is the best sleep of my life. I was born in pain, so the relief i find now has changed a great deal of my experience.

Second is environment. I have access to a beautiful light show, this is recent but it is not my first attempt at environmental tuning. My crystal lotus with the LEDs that rotate color through projects an aurora borealis on my cieling. I adjusted how much light and how much of the room is filled by choosing where this sets. The lampshade catches eighty percent of the light so i can leave it going while I sleep. I sometimes turn off the lights, remove my glasses and just watch the colors. It is then when I let my mind run free into a story. Not always the one of my novel, sometimes it is just a land of color and beauty. Sometimes I am a butterfly transitioning from catepillar. SOmetimes I go on a journey through the Celtic Wheel like many legends of Arther have. I have been hunting for a non noisy home planetarium machine to buy, once I find the right one via research it will be something to save for. This combined with my aurora can create a new environment. The high end ones, which is what I will strive for, allow you to change what kind of star field and view you project. I have a plastic moon, which is not sufficient quality to recommend as this is my third and it too has broken, that rotates through the moon cycle. I can feel outside without going outside. This means setting up access to light controls via my remote plugs. I control my internet to reset my modem, my bedroom light, and a few other things which need on and off from my bed. I tried a few brands before finding one that held up to my abuse (dropping, oh so much dropping) with the Etekcity brand. A bit of velcro and it is stuck to my wall by my bed, where I can comfortably reach it and poke the switch.

Third is entertainment. I only have a tablet and a desktop. I am on bedrest. SO my carer and I put my monitor on a hospital bed table, set up the tablet beside that and the tower on the floor. This required moving my uninterrupted powersupply, ditching the monitor that was bigger and also dying anyway, no external hard drives, a wireless trackball and keyboard… annnd it works. It works well enough that I can watch movies, write, and function as I would at my desk. This cuts down on feeling trapped. I can watch DVDs, stream hulu, netflix or other services. I can run facebook. This is not flawless as my PC has no wifi built in, not an issue for the living room… the old wifi dongle I have is over ten yaers old and cuts out a lot. This also isn’t as big a deal except for facebook anyway. I turn off the net to write, I mostly run hulu and netflix on my tablet. A laptop is more ideal but disability is often tied in to poverty so I must adapt with what I  have.

Fourth is food. I eat in bed now, which is a terrible thing to imagine for most people. I have a pillow for some dishes, a tray for others and still use the hospital table as there IS enough room for a monitor, speakers, tablet and medications on thatthing and my bowls. My bowls andplates are hybrids of each other, creating the right surface. Using a bowl cuts on spillage in bed too. Sometimes there are accidents, but that is true everywhere.

I have built a modular world inside my home, where sensory friendly moments dominate the invasive terrible outside world’s loud and painful ones. The lighting, the entertainment and even the music is tailored to keep me happy. The internet is of course a huge reason this works as is my perpetual creation with in my mindspace. I am dependant on my carer for this to work but it is still a matter of personal need.

I still have pain. I still must log it, track it, and treat it. I still have moments of frustration at my limitations. I want to shower but it is too dangerous for me to do so right now. Its been over a week of just sponge baths. I lament for it. I also know that it is better to wait. I am still clean, I just want to get a better type of clean. I still struggle to eat. I still must move to go to the restroom. Sometimes I still get sick and must stumble forth to find a place to vomit. There is no perfect setting or world but I can give myself beauty, enjoyment and I suspect most people can manage this too. I needed help to perfect what I wanted to do but this concept is not newly stumbled upon. For over ten years I have refused to live in an environment that hurts me. My system is always being tweaked as it is imperfect, but it gives me what I need to create and function.

This post is dedicated to people in pain, people with sorrow, people who have no idea what to do to make it better. It is dedicated to people learning how to heal. People like me. People like you. We must adapt to survive but not all adaptations are born out of logic. It isn’t logical to realize changing your walls to stars and trees is helpful. If it was, this would be a built in feature of every home. I am simply sharing my own adaptations. I learn from others who do the same.

Reclaiming the Pain Olympics

The Pain Olympics. This is a phrase that creeps up on message board support groups, it is one I have used myself. It is always negative. I woke up wondering why. When people seem to compete to have the most agony why do we look to the Olympics? This ignores the history of the Olympics and what actually occurs to train and prepare for competition. If anything the Pain Olympics should be a positive thing. Olympians are driven people, they put effort into their chosen sport from a small age when most have simpler ambitions. Most of them come from privileged homes but not all. To be an Olympian is to be a pinnacle of health. So to be a Pain Olympian is to be… it is hardly to be a pinnacle of someone struggling with pain in it’s current context. Something we must change.

The fact that people seem to compete for pain on the surface is also illogical, however that is not what is really occuring. The people competing are stuck in a space mentally where they cannot empathize or recieve empathy. Everyone has these moments. They seem most common amid teenagers struggling with the difficult transition from childhood to adulthood. “No one understands!” This feeling echoes through you at times, this social doubt choosing your most vulnerable moments to spring up. Often people are unaware this is even what is going on. They just know they hurt, and they feel isolated by that pain. They feel so alone and as if this pain cannot be tolerated, but helpless as to how to proceed. This is what the current pain Olympics looks like. It is not glorious. If anything it is an agonizing place to be, and while people do need to be reminded that they are not alone perhaps in using this term the helpers are being remiss. I know I have been. I am not always the best at showing my compassion. I am at times too direct, too blunt and this may be a moment where this is true. There is no need to shame people who are in such a state of mind. Saying you understand fails to work but there have to be other ways to say, “You are in pain, you aren’t the only one. I cannot fix your pain but I can listen. I can understand. You don’t have to suffer without compassion in your life just because you hurt or just because your disease is rare. I know it is scary and today is especially bad, but I am here.” In fact those words work just fine.

I have not participated in the traditional pain Olympics in a very long time. Escaping them was a feat in and of itself. It requires rigerous mental training. Every day I must approach my pain. I canot hide from it, run from it, pretend it is not there or otherwise neglect myself. I must try to stay at my fittest, eating the best possible food… which often is bacon and cheese and potato something because that is what I can get into me that my body won’t reject but that nutrition is still far above starvation and isn’t wholly bad for you. To face my pain I did fight for pain management too, so there is relief. My set schedule of medications keeps me from breaking down most of the time. I still have break through pain and when I wake up there are dark moments. It hurts to breathe, and often I wake up choking because without pain medication the act of breathing is a nightmarish thing. So I push on through and persevere.

Pain Olympians I hereby reclaim this word. A pain Olympian is someone who despite the pain gets out of bed if possible, brushes their hair if they have it, and does something to nourish their body. IF you cannot get out of bed or should not, then staying in bed too is a victory. It is something I am personally terrible at. Bedrest is extremely difficult, even in our modern era of computers and constant access to entertainment. A Pain Olympian is someone who does what they must to survive despite the pain. That is the Bronze Medal. The silver medalist does all of the above, then also does something pleasurable. Maybe you eat some chocolate, maybe you shower, maybe you go to bed with some spoons remaining. A gold medalist is someone who does all of the above, despite the pain. This is not a good day sort of award. You can only get the gold on your worst days. The rest are training for days like this, building your tolerance. The gold day is when you live. You breathe. You stay alive through the pain. Yes this means many days Silver is the best we can achieve, but that is a beautiful thing. There are days without pain medication, some people do not have any. I have gone many years without it between years where I do have that luxury.

The pain Olympics should be something every chronic pain sufferer participates in mentally this way. Personal goals they set themselves. Olympians give up family, friends, activities outside their sport. Pain Olympians and chronic illness sufferers already lost most of those things. The weak friendships that could not subsist without constant grooming are gone. Marriages are often shattered. Both to me sound lonely. Both to me sound hard. So I have reclaimed the Pain Olympics for what it really should be. It should be something we are proud to survive, it is a grueling, defeating thing, and pain takes so much. I cannot give actual gold medals to people who survive but they are there. I started seeing my scars as signs of survival a long time ago, so the gold medal is just inside of them. They are the ribbons to hold it to me.

the biggest thing to know about pain is everyone feels it in measure. I have written often that pain is a gas which takes up every available space it is given. Pain medication, meditation, and mental fortitude as well as tolerance to pain make it far easier to contain. Years of the Pain Olympics have made me aware of my strength. I already was strong, so I cannot claim they made me stronger. They made me more aware of my weak points. Which can make someone feel stronger but can also make them feel weaker. The Pain Olympics are not about defeat. If you are there, then you already survived something. Being born, being a child, being a teenager, being an adult. Perhaps you are still a child. Every day we are alive is something we survived. Every day. This is why I celebrate my birthday and always will. It is my victory celebration for another year. Someday I will die, but not for a very long time. I refuse to go peacefully or quietly, nor will I go because of the pain.

Serial Killers, Survival, and Vulnerability (PTSD trigger warning)

I have known more killers than decent people. this is a thing that haunts me daily. I know what  it is to be hunted. This has dogged my thoughts for some time. I think it does every survivor. My father was a serial killer. My husband. My uncle a serial rapist. My mother complicit in the crimes of my father. My grandmother potentially was a Black Widow killing her husbands, I do not know enough of what she spoke of to be sure. She lied a lot, she was confused. She admitted a past history with drugs and being committed once for her delusions. She lied in the same manner as my father. I hated them for it. I think I still might but mostly with my family I am a numb cold space or a raw wound. There is nothing to love, except the fantasy of what I wanted them to be.

I think a lot of people have these fantasy parents. Loving them more. Loving them equally to their siblings. Not all fantasies are like mine, where the fantasy is still a demented reflection of sitcoms and mistaken love. Fantasies that contained no joy. i did not know joy yet. Yet. I think most birthdays make me retrospective. I suspect this is human nature. We have been alive a span, perhaps it comes from survival and the need to understand what we are doing right. I am very good at survival, which is why I am now thirty.

The predators in my life have not all been flesh and blood. I once drew the attention of a serial killer who mistook me for prey. He sat down on a park bench beside me and my friend, I lied about our names out of instinct. I thought something was wrong. He scared me. For a long time my escape was attributed by myself and those that I knew to being psychic. I am not psychic. I am astute, despite brain damage my brain functions at ahigh capacity. I have an eidetic memory, which despite how TV shows is not all that perfect. I am smart. I also am experienced with monsters. At this time my experiences with peace were limited, though I had not yet fully trespassed into darkness. I do not know what I read in him that told me he was hunting but I knew. So we ran for our lives.

Our run was not clean. The way out was not truly running alone. It required we swim through sewage. It required that we ruin our winter coats consigning me to a cold winter. It required the revelation we disobeyed our parents. She was more terrified of that at first, until she noticed I was not wrong and the hunter followed his prey. I will never forget the white truck, the partial liscence plate remains though I no longer can transcribe the numbers. His smell. HIs breath. It is etched into my memory. My friend and I looked alike. Pale, big eyes, matches for his victims though younger. The youngest of his hunted that they know of. He knew our names, despite my lying. I introduced her as Gabrielle and myself as Barbara. Something trite, Silly. Instinct. Lie. My brain screamed it so I did without hesitation and without the usual queasiness that I associate with lies. The irony of my preference for writing fiction, explained easily with that being a story and no one being required to believe it, with that sickness with a lie does not escape me. I think that this is also why I write about what has transpired in my life, what I think as a result and study myself in order to understand a way to cope. It has gone beyond that many times. My need to think it through and comprehend has turned out to reflect in other survivors. Now I bond with people. Now I know that this is strength. Just as that day without the ability to swim I found it.

We ran. Fast. I dislocated my hip running, it never was the same. The first pelvic dislocation. I did not let it stop me, it hurt. We ran past the police station because I was primal. I wasn ot thought. I was simply a gazelle surviving. My friend did not think. She was too frightened that he was driving after us, chasing us in a car. This is why I went thee route I did. His vehicle in that small town was not known to me. This is the only part of small towns I like. Strange vehicles are known. This exists where I live now too, it is such a closed off area. Small towns and the War Zone, the ghetto, the gang area. Whatever you call it. Isolation exists here just as there. There is less crime here. I find that ironic. So we ran. One of our friends, more hers than mine as was true of them all I was simply the smart kid they let help them with homework in exchange for friendship or other things along that line, was the daughter of the chief of police. I knew her house was safe. I had run there before when afraid. Her father believed me. He was the first authority figure to believe me on bad things. I was raped by a schoolmate, emulating his father. I showered, which was what my mother taught me to do. So proof was lost. I assaulted that boy, I took bloody vengeance. I never have regretted that. No charges were pressed, even after I ended up stabbing the kid with a fork in the cafeteria. He believed me. He told me he did. Realizing how pivitol not being believed is, that is why this is in my head. That stabbing was weeks before this occured so I knew it was safe and I ran. He would have caught us if not for the location of the police station and his house. He was very close before he saw the sign.

It was raining. It was august. The man knew my birthday. He told me he knew. Just as he knew my name. He knew my address. I am lucky in that home never felt safe. I did not feel safe in a home until where I am now. Safe was so foreign that I did not even know how to define what I felt with that primal knowledge where to go. If home had felt safe or my friend’s home had felt safe, which it did not due to her abusers, who forbade our contact because I knew with them too. I told them so. I did this to protect myself during a sleepover, other abusers I kept silent on. I see them in many places. This too is for survival. If you can identify the predators they cannot hunt you. I woke up with her mother’s live in boyfriend looming over me, so I hurt him and showed him my power. I was just big enough. He limps still, I dislocated his knee cap. Though that one may be dead from his drug use, I damaged him permanently and he feared me. It was the weapon I knew how to use. A “gift”. The man hunting us that day was one I knew I could not take.

We made it to the house. She was too afraid to even speak. I told my friend who was home alone to call her dad. Not nine one one. She did. I told them everything, down to his partial plate number. They found his truck. It was a work truck for a farm he had found a job at. Just passing through. I gave them a description. They brought in photos. I pointed him out. They never found him. He found himself. I do not remember if it was months or weeks but the next time I saw his face was when he was on the news. He lived in Mexico. He hunted in the US up and down railway lines both active and defunct. He trailed right through and we were the fit for what he hunted. He knew more about me than he did her. I was his prey. I was vulnerable at that time, exceptionally so. Predators prey on vulnerability. There is nothing a person can do about being vulnerable to a point. There are small things you can do to offset that but there is no “cure” for it. This is why I know escrima, carry a taser, used to carry pepperspray before it became too much for me to handle, and do not go out alone. Self defense courses are vital. Doing things to feel confident is vital. Yet truly vulnerable people cannot stop being that. A part of me will always be vulnerable. I have accepted this. I am now accepting that it is okay for me to have escaped things like this, I have felt guilty for a long time about those who did not. I used to dream about this man’s other victims. I have not thought about him in a very long time. I cannot quantify the time.

I have survived. I did tell my mother that the man on the TV was the man who hunted me and my friend. We never went to trial to speak. I am not listed in his wikipedia page. I checked. I do not know if I am a known quantifier there. For that I am relieved. This man crossed countries to kill. I survived him. Perhaps I am not the only one after all. He is dead. He has been since 2006. I did not know that until tonight either. I do remember talking to the FBI. I do remember this being recorded. I do not know if they had mercy upon me or understood that stress could break me.

Soon I will begin writing a fictional story. I am ready. My body not so much but my mind has begun to spin a tale. It is dark. Just as my life has been. You write what you know. I know survival.

Heroes and Villains (Trigger Warning)

Victims of abuse and horrific crimes all tend to watch violent TV as long as it is not too triggering. For me I realized this is my need to see bad people like those I know being persued by valiant heroes who rarely to never fail. I dislike redundant writing but a part of me needs the reminders that the world has the heroes to match the villains.

I know many villains and I know too few heroes. The heroes in reality let me down. The good christians turned away ignoring what they saw because surely someone as devout as my serial killer father could not be bad. My exhusband wore a similar mask. I see him for what he is, the man I loved and married. The monster underneath. If he had not met me and I had not survived he would have killed more than four women before me with one surviving to enable and myself. I escaped and it drew out madness in him. I cry as I write this because a part of me still wishes I had died. That part of me is twisted, broken, and full of jagged edges. Broken glass, bleeding, eternally damned. That part of me is a little girl hiding in the darkness, holding her breath so that the predators cannot find her. There is no healing for her that I know of though I try.

My father and my exhusband both had similar desires, similar tortures. Neither comes up in these shows often. It has only happened once and I pulled out my keyboard and began to write this. My father, the greater monster, who tore his children apart physically enabled by his wives, has never turned up. Just my exhusband. Charming, smart, but not as smart as me. That was his reason for hurting me. That was why I deserved it. The wife should not be “better” than the husband. She is supposed to be weaker. Most of me is weaker than he was. My body is made up of fragmented illnesses, autoimmune diseases he took as a sign of God’s wrath at my survival. He demonized me publically. He threatened me constantly. The part of me that is stronger than he was, just as with my father is my mind.

A part of me will always be a victim. I cannot shed the wounds physically or mentally entirely. So I need these heroes. When I spoke about my father and told the police, my mother, and the church leadership he was killing people. They turned away from me. I was told by the police I was lying because small children make up lies with graphic detail about murders all the time. This is sarcastic. No child does. Yet that was the excuse to decry me. My mother told me to be silent, because she did not want to die. My minister? He told me it was a sin to turn my father in. I think they all believed me but the horror of it was too strong, and who would believe a little girl? Sexual abuse is erased for the same reason.

I spoke up about the neighborhood predator after he hurt me because the pain was bad enough I was afraid of not fulfilling my father. I also waited until we were far away from the city because I was afraid of his killing the abuser. I had already had worse but I knew it was wrong. So I told my mother, who told my father. Surprisingly the rapist whose first name was Joe? Went to jail. My father lost his temper in public, which was vindication for me as the world saw. My sensei? He told me he was proud of me and let me hide. I ran to him not my own father to hide from the two of them. My sensei knew everything I think but had no proof. I know if I had just told him I would have had it all end. I did not because I already knew no one would believe me, so I sought my shelter with one of those valiant heroes and for that time it was enough.

I never hoped that the pain would end. I never could. I married my husband still living in fear for my life. Every single day. That fear abated only after he died. My father died and that seemed to set him off. I became freer you see. I began to make plans I could not with that man alive. My mother? She hurts my soul but I can take her. The irony. I am crippled by their crimes but I know without a doubt that I can break her if I have to. So the fear is only there when she is present. Evasion is a grand tactic. I suspect she reads my blog. She may know where I live for now but that only lasts a bit longer while I go apartment hunting. I will be free of her once more.

All these monsters in the world with their victims shouting out. The reason people watch these shows varies but perhaps the other survivors, victims, those like me trapped forever in between with strength and that inner wound together also need to see their heroes. The survivors. The episodes I prefer end with the villain bested by his victim. For I have done this. I know it is the truth.

The episode that set my brain on fire was Criminal Minds’ limelight. The villain is a mirror of my husband. His clothing, his hair, his face is not so much the same. His MO? It was what my exhusband was becoming. It was his desires though his targets were only disabled women and children. Beings he thought he could infantalize. When I failed to be helpless it set him off and he devolved rapidly. To a point he could not survive. My resiliance over the years of attacks drove him deeper into a frenzy. He returned to his enabling victim, he trained his children in the arts of abuse. He died. My survival killed my abuser.

The heroes shown saving the day are not present in my life. I saved myself. The police turned away when I called for help, once I finally could, with my exhusband. Just as with my father. It was not as damaging as when I tried to press charges against my father still with in the statute of limitations, with him confessing guilt, for the rapes and abuse. The district attourney told me I was not worth the effort of prosecution. He told me that my abuser was worth more than I was. I was 16. I was in torment. I build a bomb. I decided if the abuser was the one with the value I needed to become a monster. After my sixteenth birthday when it was all so painful I decided to kill everyone I could and myself. I was saved by my best friend at the time, the one who introcuced me to the taste of hope through television. You see I do not just watch crime shows and other dark things. I watch cartoons. Batman, Sailor Moon.

Batman came out of abuse. A pain. A trauma. The gravest loss any child can have. The loss of family. The loss of identity. Fragmented. Broken. He rebuilt himself to be the hero. Sailor moon… the heroines are all children. On the cusp of their womanhood. It is in fact the power of their divine female power that gives them the ability to take on villains and save the world more than once. Buffy too later fulfilled this role. Not as potently as a heroine who cries, shows her utter terror and grows into the role. Usagi never hid behind smart remarks. For many years I did not know how to cry. It has been three years since I finally could. It is still difficult. I think that these tears matter however. It is okay to cry, not just because crying is human but because it was forbidden. My tears are a sign, as distressing as they are to Sprite, that I am healing. I am not just a victim. I am a survivor, and to survive means that the wounds heal. There are scars. That little part of me which never fully heals is scarred.

So i am going to find a way to get those tattoos I desire. I am going to mark myself to celebrate my survival. I am going to move. I am going to continue to do the one thing all the villains in my life have tried to deny me. I am going to live. I have cried the entire time I wrote this out, Sprite is interfering in my typing, Sprite is upset. I am upset. Its okay. Some of this vulnerability is due to the surgery. It stripped away my ability physically, my energy, and I am not okay physically enough yet to truly defend myself. So I have been reeling with this mentally. It was there under the surface and boiled up. I have been waiting and I am relieved.

The heroes who enabled the villains are villains. I always give people the benefit of the doubt when they talk about their experiences as a result. This does not mean blind belief but I do not tell them they cannot experience, have not experienced. I investigate. This has lead to me being the hero many times in adulthood as well as childhood for others. I was saved from blowing up people and being the bad guy by assaulting my best friend over a sandwhich. I confessed it all and I went …to help. Where I was denied help in all the ironies. Other children worked with me and we saved one another.

So now I can cry. I can cry. I can cry. I do cry. I cry for the youngest me, the oldest me, the me that is now, the me that was, the me who could never be. I cry for the children like me. For the heroes who are truly heroes, for the do exist. I cry for them all. I cry. Then i can smile. Then I can laugh. My tears washed away my depression. I do not think I am truly depressed anymore. I have moments but my heart has flown for a long time. I know joy more than sorrow. I know pain yes but the anger is not omnipresent anymore. My walls when I moved into this place I plastered in butterflies. I did this because I did not want to die if i saw a butterfly. I have not thoughton killing myself outside of the morning pain ritual where in I wake up in tears, take my morphine, then get on living for several years.

What is whole? I may never know. I may be whole. I do not know. I think that the persuit of life is more important than being a complete being, and can one truly be incomplete? I know feeling, now. It was forbidden too. I thought I did not know love and could not love. That was the reason I wanted to kill the world. There was no love. I wish I could reach back and comfort that child, screaming for love. I wish I could love her in person. I love her now. That took a long time. I feared that angry child. I loathed her. I hated her. I tried to pretend she never existed. I love her now. I cry for her. To hurt so badly and be so unseen… the only person to see me was a teacher who I was going to wait until she was not at school to kill the world for.

So reader, if you have made it this far in my primal wail, I have a favor to ask. If a child, adult, or someone in between asks you for help, tells you they are afraid, or whispers that the world is full of serial killers… then listen. Get them help. Help them. Show them someone hears them. Even if they cannot be helped directly, that single person hearing them can save their life,their soul, and their future. It can be the difference between giving up or suffering. It is the difference between death and life itself. I was tortured every day of my life until I was thirteen, when I managed to for the last time before adulthood tell my abusive father to fuck himself and was big enough to stop the violence against myself. That moment did not change my life yet. It took time for me to understand it.

The irony is I left these episodes playing, and the next one as I wrote that just after had the villain try to take on someone who could fight back. HIs bad. You see, I can and did fight back. It set a precidence. I could. So I started fighting everyone. Now I still fight. I am an advocate. I am a warrior. I fight for people who cannot and myself constantly against discrimination. I am a warrior and always have been. No one can hurt me now, unless I let them. I have answered my door with a taser and sent a burglar running in the last year. Delicate, paraplegic, crippled, broken… warrior.

I am still afraid of that wounded part of me and the anger there. I think that gives me drive to change the world. I am an autistic savant, I am intelligent. I am strong. I am between genders. I am tattooed in my soul. I am many things. I am a survivor of so many bad things, and every day I live for the good. I do not cry every day, its still very rare. I am entering my favorite time of year, Halloween approaches. A time for masks. I understand why I adore it. My parents hated it, and it was a chance to be exactly who I wanted. A hero. My early costumes, even now still homemade, were all heroes. Trashbag and a swimsuit let me be a Xena that was good enough people did not have to ask (Yes I did have tin foil armor plating and a frisbee chakram.) I always wanted to be those heroes. I am going to sit down and enjoy the capture of these villains by these heroes. I am going to remember, I am that hero. I was three the first time I spoke up against my father. Three. I was so brave. I knew it. I expected to die. Every time I spoke up. I expected to die. Now? I look forward every day to live.

The Update I didn’t want to make. Washington Federal steals from Disabled People.

I am alive. I am also annoyed. I keep trying to update with nice things like the fact my carer is awesome, and the agency sucks. I keep wanting to update on helpful things. Instead I am going to paste my facebook status about Washington Federal bank who stole from me. Flat out. Stole. Shocking? Doubtful. It is a bank. Do I want this passed on? Yep. If you are with them should you run? Far and fast.


This post is public. I want to have you all share this because the bank Washington Federal is underhanded, slimy and needs to lose customers. I didn’t ever open an account. They bought my bank. The building is in accessible. My account was bought out in 2008. The first thing they did was lose it. I had to find proof of my account amid surviving my exhusband’s attempts on my life, my disability issues etc. Their building is NOT ADA compliant. THe doors are too heavy for my carer to open without struggle, there is no button and often they ignore you trying to get in. When I settled for the drive through as I couldn’t juggle between banks and everything else. They called me after and miscounted money. They wanted me to drop what I was doing and go back to make sure they hadn’t given me too much. On the contrary they shorted me but I was not wanting to challenge the seizures that can happen when i deal with numbers so I had trusted. That never occured again. Several seizures and migranes and counting and the next few times same thing. So I only went inside and only when I had to. A friend helped me set up a bluebird account. I had a free account, and left enough to keep it free and hopefully save.

A few years of this bullshit go by and every visit is accompanied by a promise they are working on the door. I stopped pretending to believe them. A transaction where a friend sent money to pay for vet bills went awry and they…lost my money. Again. Why didn’t I close? At this time there weren’t alternatives and my exhusband’s financial abuse meant I didn’t HAVE options. If I wanted my SSi to pay bills I was stuck. Soon though that changed with the shift from paperchecks to bank cards. I switched immediately as often my bank didn’t have my pay on the first and this endangered my ability to keep my home and eat. Living on six hundred dollars a month for years the added stress was one I didn’t need. So I kept the account as an emergency back up with 100 dollars. It was hard but I decided an emergency may happen.

I with drew seventy five of it last year because I had uncovered medication I needed and no alternative. I got my first statement since then a few days ago with no money, and a notice of closure today. The statement arrived on a Saturday and yesterday (Monday) I was dealing with other things related to my health and the surgery I just had. so I call. I sit on hold for ten minutes not trusting them to call me back and get told how I should feel bad for the BANKER in all thisbecause he has had disabled and elderly relations die. Their inaccessible bank tells me this is probable bullshit and he doesn’t care. The fact that I am now out money because they felt they could change policy without actually notifying me? I am just screwed.

So if you bank with Washington Federal CHECK YOUR ACCOUNT. Their irregular statements sent whenever they feel like it are an issue, i will be filing complaints over their head and in the end? Just close the account if you can. I considered it earlier this year and regret not doing it since I now DO have options. It just means I can’t cash a check. I don’t really get those often anymore. Pass this on, because if you care about yourself, others, or just want banks who treat people this way to go out of business its the only way. For the strangers who read this I am extremely disabled with multiple health issues which are rare and untreatable, I live on SSI which is now 700 a month for rent, food, utilities, and the care for my pets. Assistance is something everyone needs and when a bank loses your monthly check then you have to prove you had an account multiple times but you are trapped and they know it? Its horrible. No one should be treated this way. My anger doesn’t have much pull but you being aware does. So share this. Spread it around. The fact that they couldn’t treat me with basic respect and expected me to just be happy about this is the worst part. The fact that apparently I am the same as a dead person is strange to me but the management doesn’t care.

If you want to call the branch and personally let them know you heard about this, this isn’t my legal name (not giving that as this is my preferred name) but you can talk to the manager Juan. Their phone number is 505-291-3700. Feel free to ask them questions about this. They will lie, they will give bullshit answers. Ask them about their inaccessible building and wait for the excuse of “We’re working on that.” There is no excuse for this behavior. For those in question the specific building is the one on Eubank but all their locations are THIS BAD. The bank they bought out was actually quite good. I am going to the better business bureau. I am going to push but we all know Banks are seen as untouchable. If all their customers leave? They aren’t.


I got a carer on Wednesday. I wanted to wait to be sure she would come back at least two days before I started to breathe again. The fact is this only happened because a politician got involved. Congresswoman Michelle Lujan Grisham’s staffers jumped onto this when one of the people linked realized that might work. I entered shut down a bit ago too and my brain feels like it has been smushed with a hammer repeatedly.

It isn’t really over. I find this a problem, but yesterday I had a visit from adult protective services where the employee tried to get my therapist’s name from me but only after I made it clear I am not done until we prevent this issue from ever happening again. She too told me how many other people were put into the same situation but assured me no one DIED. That is like waving a red cape in the face of an angry bull. That means this can be a class action suit but I am not sure if it is Medicaid, Bluecross or both that get sued. Somehow no one dying is supposed to make this okay. Somehow having a carer now means I am supposed to forget suffering, the still there infection in my flesh and my pain. Somehow that is the expectation.

I have been betrayed by the system meant to protect me. My carer is not supposed to help with the cats even until Bluecross finds the papers on Sprite being a service animal. This is not done. It is progress. Massive progress. I can maybe recuperate enough to get everything fixed that needs to be fixed. Yet it is not over. If it was over this would not be the obsessive priority of my stress numbed brain. I came close to dying too many times for this to be over. No one has said “We apologize for our colossal fuck up how can we make it up to you.” They have said, “Yeah so others were effected too, you don’t get to have anger.” I had many things destroyed including my lightsaber, my waredrobe, and even some of my bedding. I have no HAND TOWELS to dry my hands on when i wash them.

So we have progress. I am lawyer fishing after Monday. Monday is my first section 8 inspection so I find out if I need to move or not. The house is actually almost up to normal levels of clean, though I am still going to make it clear to the section 8 lady that I was on my own for months so she can write off some of the not quite cleaned things. In three days my house has been made beautiful. I will post video once we get the Gothmas decorations down.


The Voicemail

This is what I posted on my facebook after finding out that at 343 pm today, well after I had made calls of desperation and pushed myself into physical and mental shut down, that Heart to Home called back and I get the same carer.


“So I had shut down today, for quite a while. Not that thisis a surprise given everything going on. Tomorrow Miss “She came on to me because she was naked” is going to supposedly be back. Except she will not do anything cat related. Ie litterbox, cat water dish, and cat meds. I also have a voicemail stating that I need to respect all boundaries. Cause I am to know those without them being stated.OH and I can give her my debit card and she can get groceries. I am sure they are presuming I have foodstamps right now, but not for a little over a week. Not so shockingly they get used up.

This is CLEARLY not going to work. I am sure my being quiet and probably surly because I do not want to even come close to saying something wrong will be the next issue or when I shower. So much frustration. ”


I considered uploading the voicemail because I recorded it with my tablet. The condescension here is that I knew the boundaries and willfully ignored them. WHAT boundaries? Boundaries are set via communication. So I am updating here and … it is not over. Clearly. Why would they send the same woman? Its a new company run by “experienced” staffers. The owner went back to nursing school and stuff. Etc. So I should be bowing down with gratitude because… if I concede to living in a house with no cats I can have care! I cannot live with a filthy litterbox. I cannot make the cats live without water or food. I cannot continue to make them go without their meds. So if I give up my service animal, who should be accounted for in the hours, then I an have care. If I let them stripmine every little good thing from my life I can have care. I mean who wants to go outside.

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