Pokemon and Homeless Children (Spoilers and Triggers Ahead)

I usually do not blog about brand new shiny toys, due to income levels I tend to be way behind the curve but I was gifted Pokemon X this month and devoured the initial story rapidly. This is my favorite story so far. Yet after that initial story there is another… instead of just endlessly hunting pokemon down (710 I think now) you end up with a VERY socially aware story. I have a page break here so that people wanting to not be spoiled as far as plot can avoid it.

 

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Will I… (Trigger Warning)

 

I have been trying to hold back my level of suffering from the world. The various support groups for autism, Ehlers Danlos Syndrome, PTSD… every single one this is a reoccuring theme. I know why. Not only is being in this level of pain dangerous but it makes you vulnerable and often this is when people abandon you, attack you, or they cannot comprehend what you are trying to tell them. I do not as a rule cry when I feel so much pain but I silently sit and try to find the cause to fix it or I just learn that this is my new life. I must always be prepared for the permanence of my agony. There are people who are lucky enough that this is not the case.  I cannot stop hiding this, even when I try sometimes. There is the element of fear. If everyone knows that I can barely breathe for pain, then even the predators know. (Oh hello predators. Yes I will tazer you even when I hurt.)

This song is from rent, it is called Will I… thus the title of the post. I could die from the on going issues I have at any time. My heart could fall to pieces, a literal broken heart. I could have a heart attack from my stress and high cholesterol. I am bleeding internally somewhere, I could run out of blood. I could kill myself. That is why I am writing this post. You see, that is the whisper in the depths of what might be my soul. If I die it is over. I do not live out of some doubt about an afterlife. I do wonder but that is not a consideration in any of my choices. I do not stay alive for other people or the cats. I love many people deeply, so deeply there is an ache of joy. I guess a mental pressure sore from all the goodness. I stay alive because I want to.

I am afraid of dying and missing people. I am afraid of lingering in pain without dignity. I am terrified of being tormented by doctors as Ihave been lately. The nightmare is not the diseases or the pain. In fact some of that is better. I officially no longer am diagnosed with epilepsy but still have a seizure disorder of some sort. The some sort is not defined by science. Yet NOT having epilepsy is a miraculous thing.  It is a wonder to me.

I spend a lot of time advocating, and passionately burning for the world. Now I am just burning. The pain is in every nerve, even though some of them should not be communicating with the brain. My blood pressure is up, my heart is racing, and this is omnipresent. I have had to fight around government shut downs for my needs, but I did this. Yet all I want is to have someone hold me. Something no one can do at all. Maybe ever again. I just want to be held in a soft space of beautiful harmonics without actual sensory input. This dark space has no reality. I often find this song in the undercurrent of my psyche because it holds most of those things. Yet I do not have to wonder. No, my life will never get better. I will always have some agonizing wrong. Yes people care. I have never known how much people care, I think I do then it seems to grow. Maybe I grow. Maybe not.

I am terrified. I feel the race of time, not just because bleeding internally is very bad but I need this resolved for my mental health before november. My PTSD is at a peak height and I am not sure what I will be enduring medically but I know I will survive it if I can. Will I be allowed dignity is the true question. I am afraid to die and leave people I love, this is new to me. I never cared before. I always lived for things like spite, revenge. My revenge has been to build my life up into something I was told I could never have. I look around this space I live in and every corner has a marker of love. Every doll I own someone else gifted me, the Gothmas tree that needs its decorations and makes Sylvani happy, the pile of scarves I know will be useful and necessary that are clean, the myriad of tiny touches. My life has been a life of grief and loss. Now that I have things I want to hold on to I am afraid I cannot survive this. It is not a lack of will to live, it is a lack of trust in my doctors. I have no faith in even the best of them. Why should I with the ineptitude I have fought against for so long?

So I am left to wonder. Yes, I am in pain. No I do not know if I can survive this. I will try.

One more thing: The man who wrote Rent? He died from a condition similar to EDS called Marfan. That runs in my family too but I lack the features that mark it. That is LUCKY for me. I sometimes wonder if the pain he felt and held too close contributed to his dying, if that is why Rent hits the notes I sometimes NEED. Just a little tidbit for people who may not have known.  I do not reach for the anthems of survival that are broad and direct, they ring hollow. “I will survive” does not match my spirit. Even when that is indeed the attitude that I display as I emulate the bronco and buck for my life.

 

I am jagged glass

shattered now

pick me up

fear the cuts

I do not intend

Yet I broke

can you lift me up?

Will you laeve

I am broken

Never repaired

yet I was beautiful

I am beautiful

Shattered glass

so many sharp edges

yet it is true

I am beautiful

Walmart

I had a strangeness at Walmart today. It was a myriad of experiences with a temporary worker, who challenges my brain function in a negative way. Otherwise she is a good carer. She asks questions we just are not quite compatible as my brain cannot function around her constant babble. First I learned that you can in fact make them go get more gluten free things, and while I waited for someone to do that I noticed the symbol of a purple heart on a hat. I turned to do my habitual thanking and spoke with the man for a moment. He was surprised and then smiled at me and said he had not expected thanks and it has been seventy years just about since he enlisted, to fight Hitler. He was proud of his service and he is in fact proud of what the people of this country have become, over all. Not our politicians but I have yet to meet even a politician who likes politicians. It was a surreal moment as I realized that he fought in a war so long ago that I only know one person who was alive then. His happiness with my gratidude and the smile were well worth my nervousness in pointing out I saw it. The purple-heart meaning he was injured meant it was more important that I thank him.

In my shopping I always cross paths with strange characters or people who just jump out at me visually. A woman in a beautiful sparkling sweater with a Hajib looked over the meats at the same moment. I complimented her sweater, her daughter translated and I thanked her daughter for that. They were surprised by this. I thought that this post would only entail at that moment my little moment of wonder at our aging warriors, as my brain tumbled over my wanting to share that I met a real hero. I was almost finished with my shopping, hunting down an elusive cheese (which I never did find) when the woman and her daughter returned and flagged me and my tempcarer down. They were in a panic because her ride home had vanished, they had only EBT and they were stranded. They needed help and this is where the Government housed them, as refugees from the Iraq war.

I had no expectation of this adventure and my tempcarer was surprised when I stopped to help them. They asked for a ride home which was impossible and a terrifying concept to me not because I am such a quarrelsome creature or my allergies but because this is something they have done before. So we made calls. We tried every option before calling of all places the Mormons that had given them their book. I even had to call the police. I felt terrible doing this. Then the girl mentioned her mother has qualified for a carer. I wrote down resources, and then we had to finish our shopping.

I felt guilt I could not help them and their relief that I helped was amazing. The gratitude. I talked to them both a while and they wanted to hug me, which I could not do for them but in the end they got a ride. Still it made me wonder how they got here, how they will adapt. What resources do people have. I literally just got home and am writing this and I do not know, but I wonder. I find it a horrifying thing they have no transport and I cannot imagine the fear they feel. What it must take to leave your entire culture behind. I found them brave, and yet desperate. It is their desperation that leaves me hoping I meet them again.

Walmart is always an adventure for me, I get overloaded between false alarm fire alarms, the people and shopping and yet this was more an adventure than the norm. I did get a bit of an allergic reaction but it was worth stopping my day to help people. My tempcarer is rushing right now to put all the things I got away. No toys even, I just stocked up on food. I feel a strange sorrow that I cannot do more, that I cannot know them more intimately but it is not an option at this time. So I will wonder and I can hope that we meet again. I gave them resources they did not know, and I see a young girl with many burdens and I wonder who she will become.

Normally I expect to bring home food, not questions about the shape of the universe and the scheme of things. Quite the load of shopping today!

The Art of Happiness and Reflection and Mother

Sometimes I am not sure what makes our brains do what they do, though given that science is not either I suppose getting it at all puts me a step ahead. I am adjusting to this happiness thing. Its an omnipresent pleasant sensation that has no real sensory equal. I like it a great deal, and am often just sitting in the moment and feeling that purr deep in the space between mind and body. I am also reflecting a lot on my past. It is not painful, and if it feels so I stop. It is different than when my brain screams to understand something but is more a cataloging of how I achieved my joy.

When I can I do this by looking at pictures. I am not posting them here because mostly I do not want to look at them again. I look back and see a twisted body, heart, and mind. I see in the pictures my pain, and remember just how I got into that tight spot. Then I put them away and look at the reality. My body is not better off but it is stable again. My competent doctor, I will always revel in having a competent doctor, has helped in such astounding ways. The simple gesture of trying medicines in a different family that I am not allergic to unlocked a door for me. Its such a simple concept and it does mean malpractice on all fronts. It was never a lack of medication options but a lack of damns given.

I find my mind is not quieter despite being happy. It babbles on and on, noticing everything and pushing on to seek and discover about itself, about the world. I am so different every day than who i was before, and I cannot help but embrace that. A year ago I would have never admitted to anyone that I do not read DC comics anymore. I am still the biggest bat fan… except that I am also not unaware of the serious issues with in he DC Universe. Batman, my childhood hero, beats on people like me. The different of mind. Batman uses his money, whiteness, and power to get away with what could be literal murder in many cases.

I suppose I lost my hero in my reflections, but it is also a case of not needing him to be a hero. I still drown myself in Bat things for the pleasure of it, without the hidden hook of needing a hero. I no longer want a real Batman to swoop into my personal gotham and wreak havoc for the villains. I did that for myself. I no longer need rescuing and my world is no longer so dark that the slighest thing will bump me over into no return. It is not a world without sun, except that I still never open my curtains. It just isn’t the same.

Mother’s Day is coming, and this year it is not an agony for me either. It was not last year but that was the first time. Cutting my mother out of my life made this weekend less painful. There are some slight twinges in that I am not there for my siblings but I do not think they need me to be so much so. They are adults now and able to choose to be free of Mother’s clutches. I am taking quiet time, not to reflect but simply because I do not want to hear all the cacaphony of both joyous and obligatory Mother Stuff. I feel left out that I do not get to celebrate with my mother this way.

I am a motherless child. I am a fatherless child. I am a child of the world. Raised by the village. Given strength by the village. I know in that aspect I am not left out but a conglomeration of the best of every woman I know became mother, same with every man I know becoming father in some aspects. It all is simple and direct yet I still am reflecting. Instead of taking part in the shouting from the rooftops or hiding from the idea of what Mother used to be I am going to just reflect.

I am going to reflect on the women who I know who are amazing mothers. Some are also amazing fathers. I am going to reflect on how they changed me for the better. The idea of a good parent is still one I sometimes struggle with. The concept of loving arms gently wrapped around me is no longer a terrifying nightmare because it is unheard of to my mind, it is just an option I am less familiar with. I think of all those mothers and I will reflect on the gifts of seeing them for what they are. The best mothers are guides, and I know many people who are guides.

In achieving my own omnipresent joy I can see the strands of time and people in my life and I can see that while my own parents never parented, I was saved from being so like them by countless good mothers. The strangers who could not ignore the abuse and said something. The people who clothed us, fed us, and sometimes just offered a space where the sensory depravity of the world did not drown us. My opportunities were rare, but each one was a glimmer in the night sky. Not a signal like the Bat signal I hoped for but something much more durable. Stars, twinkling into the darkness I thought an oblivion. House lights in windows showing me there was civilization beyond what I thought was the entire world.

The world is so much larger than I knew. There is so much joy to explore. There is so much joy I was given and so much I want to share.

I know that not every person who reads this will understand why someone who knew both biological parents could be orphaned at birth in the mental sense. The idea that all parents are good is their default. TO that person I say, you are more than lucky and perhaps you will be someone’s star.

So I will reflect now, in my sea and perhaps the world will only be brighter for a reflection of a light brightens it. I am the sea of stars, each one illuminating a choice, a chance, a path that lead me to being not just who I am today but a person who could survive without hate. I understand the village now, and it is in my freedoms to know that I am there, and maybe I will be someone else’s star.

Well Practiced Survival and the Art of Happiness (Potential PTSD Trigger Warning)

I hit a speed bump tonight. My brain splatted as I hit the mental pavement and I am sitting here stuck. The speed bump? Happiness. I am happy so it makes me sad. I keep thinking about why that is and I suspect it has something to do with the tenets of survival. I have well practiced fear, anger, sorrow but I have almost no experience with happiness. Happy was the fleeting moment that escaped so quickly and I held on to for years. I can name my happiest moments and its a very limited number. 1. Comic book convention last June, 2. Sprite and the first time I had a flashback and she was there, 3. Gothmas with M, 4. My first time being published.

That last one I had to struggle to pull through the mists of time and survival. I was thinking too about the domestic violence cycle and how cut off people are. I grew up without friends. Even now my friendships are limited. Some of that is the autism factor, I just struggle there but a lot of it is because I trust very few people. How can I trust you? You might be out to get me. I am working on this alone but I do not want to. I never wanted to do it all alone. I never wanted to have to figure out how to beat domestic violence by myself. It should not be about clawing my way up ever. Yet it has been.

I have been trying to find a therapist for five years. Since I escaped my exhusband. I thought I might not make it. Maybe I should settle for one of the quacks who try to lure me in with promises of touching me while praying but I do not think so. I don’t think my wanting to mock this person for being what I perceive as a predator on the vulnerable with their unproven techniques and faith healing is going to be a valuable moment in time. I still survived him alone. It was not even over then. It is just over. Does that make me now really a survivor?

Yes and No. I was a survivor all along but in a way not being afraid has opened up all of these memories and painful things. Its over so now I can process. I am thinking on things from when I was five, that I never considered before. My brain is just now allowing itself to sort through nearly thirty years of stuff. Not all of it is bad. Not all of it is abuse. Not all of it matters. Yet it is there burbling around. If I think of my friends instead of them I end up with my first day in Kindergarten at the age of four, walking in and being called weird before I said a word.

I think on the isolation that goes with abuse and I want to try new things to see if its actually my way or if it is a side effect. I grew up surviving and being too out cast and bullied for friends. Am I so alone now because I just never learned how or is it because I am afraid of my own friends? I don’t know. I do not feel fear when Ithink of each individual. I feel happy. Yet I worry.

I talked a lotof this out with a couple of my friends. I have had friends for seven years now, but it still amazes me when I can say that. One suggested a support group. I looked some time ago, I believe last year, but figured maybe I should. She went to bed and I began to google. I found many local support groups. Tons for folks with cancer, tons for things I do not understand such as video games, and yet for all of the domestic violence groups listed with the local news papers, online in google, and even with the various agencies that help you get out if you are not disabled the only groups are for the ABUSERS. Oh there was one for single parents. Not a one for women. There is one for soldiers with PTSD but I am not a soldier. There is one for everyone but me. I still wrote some down and may call but I already feel that is an intrusion. I do not fit by not having a child, by being a woman, by not being with my abuser now.

I am not at a point where I can just remedy this by going “Okay we meet here, come on ladies and lets survive more.” That is not what I can do right now. I did it before for another need. When I first was disabled I helped with creating a chronic disease support group. Then retreated from it because I was not ready. I will not make that mistake again. So I am left hanging between faith healers and the disabling abusers getting help and my own independence. It cannot just be a side effect of abuse or I would not have survived being alone but I am wondering why I am supposed to do this part by myself too.

I do not want to. I want the experience of people who do not get frightened by happiness. Or people who do but can tell me what the difference between estatic, joy and elation is. My brain cannot stop pressing on the happiness to see what is wrong with it. There is no room in my head for joy. I want to change that but I am lost out at sea without a compass or the north star. There are no maps. It is just silence and placid and gentle waves. I do not know how to be gentle. I do not know how to let go of the anger. I am still angry at my abusers but it is smaller every day. They are dead. I out lived them and can focus on doing more than just clawing through every day.

I am also very tired. I do not want to spend the rest of my life fighting alone to figure out if its okay to smile all the time. My face is sore. Its not the usual sore of the jaw dislocations Its my mouth. From smiling. I keep doing so for no reason. I keep laughing more and more. This is not just a side effect of the surviving either. This happiness started growing long before my exhusband died.  The sensations when I stop thinking or just feel are not the same. It is no longer a hard sandpaper or stabbing pain. It is not a pain at all. Nor is it really emptiness. It is soft and quiet there. The passions are still burning in me but they do not scream to be heard over my sorrow. It is simply quiet, and I have never had that either.

I never expected the thing that would make me cave in on asking for help with my PTSD and other struggles would be happiness. I suspected someday I might have a challenge bigger than I could face alone. This is not even true. It is just that I know I do not have to do it by myself and I do not want to.

I am a ship at sea, no port to call home. The current pulls me, so I go to roam. I am a ship at sea, the waves a song to me. Far from even the open road. The winds rise and my ship sails on, to new lands will I go? Tomorrow I may find land ahoy but tonight I am just adrift in the sea.

No Fear!

I have been struggling since my discovery that I am free of reasons to be afraid. Some of this is my consistent issue with the identification of emotions, which is not new and I found out is an actual diagnosable medical thing so I will be perusing. No idea if there are treatments or “trainings” to help identify feelings but it is good to know I am not alone on that. I found this out from an article about autism. The term is alexithymia. The discovery has helped me to cope with some of the not knowing. It removes it from “I am a sociopath aren’t I? Why don’t I ever know what I am feeling?” territory and puts it firmly in, “Well it is okay to not know” ville.

I am happy my exhusband can no longer harm me. It feels very good. I also have a spot of sad. Then comes these confusing emotions I have never felt before at all. It took me a little while to figure out why they were so confusing and then I realized, I have not ever had a chance to feel them. In my entire life I have not had one day, until now, where I did not have a reason to be afraid. I was born into a toxic wasteland of abuse and fear, and while I managed to not live that way as an adult most of the time I still had the fears of my family seeking me out for escaping. There was a very real fear until I was freed enough that they would harm me to force me to comply with their abuse and to make me go back to it. They tried, but I endured it and then came out the other side. There was also the fear that my father, the murdering sociopath, would decide one day to harm me. Being someone that he felt threatened him, especially in our adult encounters, was incredibly dangerous. I destroyed one of his marriages in a fit of rage at the age of 13 by telling the woman the truths I could make my mouth say of what he had done. When he did not deny it, she left him. I had never expected that because it was new to me, and he told me he would kill me. By the time he died I was married to the Ex. After surviving being caged and harmed, he continued to try and kill me. My brain has no idea what to do.

I am experimenting in ways to build on these good feelings or to even express them. The colors for good are still those dark jewel tones, blacks and the image is fire and air and water and earth all twisting up. Its a bit explosive, but it is not a bad explosion and I do not have the ability to paint it. Even writing this much I feel the torrent and my heart races, but it races differently from fear. I think it might be excitement. Its a good rush of adrenaline. I am doing things that get me closer and closer to restoring my life to where I had carved it into being before my Ex. Not entirely the same, it could never be as I am no longer that same person. I consider that a good thing however. I want some of the activities back, and I want to see in person some of the friends I feared he would harm. Little things at first, when I try to do more my health is hurting me some and then I am left to struggle with the energy drain of these strange emotions. I crept outside and sat there at night several times. Its not yet summer so mostly it is quiet though the sirens are getting more frequent and later at night. Still, I am outside. I am planning more than a month ahead for small things. Once my wheelchair is repaired I am going to the museum. Those things. Writing this blog is also one of them.

I am sitting here trying to formulate the words to explain things I have no way to, no experience for and the only words that fit are it is like a second childhood. I am reborn. I feel the urge to go running and playing. SO I am. Albeit slowly because my body is not nearly as energetic as a child’s. I have found that not having nightmares has actually disrupted my sleep because it is so new. Yet my sleep feels better. I am less exhausted even when I wake up startled by my dreams of sexy shirtless elvin firemen.

I feel like I can do anything, and I suspect some of the sad is in not having felt this before but despite those pockets of sad I feel… well I wish I could tell you. I feel as if I get not just a new chapter but an entirely new book. Book Two in the Series of Kateryna Fury, maybe three. My life is full of blank pages to fill with adventures and happy memories. So I will. I rebuilt myself to happiness and there is something like satin against bare skin about living without fear and knowing that I, with the help of very dear friends, made my life this good even with the fear. I have an awesome life. I have found too that this story which has haunted me for months and I have been working slowly on writing is no longer something I am afraid to write. It had no ending. It is a dark and somewhat frightening story but the ending exists now. I had not yet felt the things that I needed to in order to let the character feel them too. No fear.

It is strange to me that my brain reaches for things to be afraid of. It is seeking them out and trying to fill what feels abit like a void but none of those fears fit and my emotions kick that away before my logic does. I am working on trying to visualize happy things that might fit that spot. Is it a want? Is it a need? I have no way to know. Something about the unknown is frightening, but this unknown is a kaleidoscopic whirl of potential and I am going to start exploring.

Looking Back

Sometimes I wonder how I reached the point I am at in life. I have few friends but those I have I value. I have recently shed myself of people who I once considered friends and in retrospect I question why I ever thought this. I logically understand the why, it was a step on this path to knowing that they were bad for me, and that I deserve better. I did not always deserve better. In a way its like watching my mother date an abusive man who was in her eyes good because he just did not hit her. Baby steps. Learning steps.

I think back on all of the years I struggled and just wanted any friend at all. I can see myself sitting on the swings alone, watching people. I do this often. All my memories punctuate the aspect of watching as from the age of eight through now there is the blurred shape of the world then the crisp shape of whatever is past my glasses. Even in the memories this is so, whatever I see is drawn into sharper focus that way. I remember watching people, and wondering what it was that made all of the girls come together and laugh over things I still don’t get the joke on. I sometimes think there was not really a joke but a need to pretend that they all mattered. A need to be something. Anything.

I am still socially awkward. In fact in recent years by no longer putting on the act of normalacy it may look like I am more awkward now. I no longer risk dying just to be around people, especially since dying isn’t very fun for anyone to experience or witness. I no longer tolerate people in my life who think that its just enough to close a door, as if an allergen strong enough to put me into anaphalaxis when I breathe it is really stopped by a closed door. If the door was air tight? Maybe. That person was once my best friend. If they read this they may know who they are. I am thinking too on being pushed to do things I am not ready to.

There is a way to invite someone to do something, and there is a way to demand people do things or else. The difference is dramatic. I look back on my life and while I am still very young I have seen over and over again so many people who just want to take and drain no matter the cost. Perhaps it is being disabled that makes the cost something so clear to me, but I do not think so. I think it is simply being alive. The cost can express itself in the form of that person at work who walks into a room and in five seconds you feel drained. They stay too long, they ask too much but society obligates you to not say a word, to act like its fine for people to be that way. They might be obnoxious, rude, or even too polite so that you know they are up to something. THey could also be desperately lonely. Sometimes its okay to leave people in their loneliness.

Sometimes it is okay to tell people too, that solitude is not the same as loneliness. I was asked recently what I want from travel. It is not the tourist hot spot crowded with people but the serene beauty offered by nature. It is the quiet space where few people know to go but holds more beauty than the pastiche of plastic doodads for people to buy and the obligation of what must be seen. While I do want to see the Great Wall of China, the Mona Lisa and of course the Tower of London, I also want to see a backroad in any given country but my own, to listen to the people laughing and talking, and to watch the world.

I look back and I find I am greatly relieved to have found friends when I needed to experience them, and now to lose those people who were not really friends. I am solitary but not alone. I wish I had learned to walk this way long ago. This path of quiet where I reach out to people and they reach back, instead of one of us reaching and falling again and again and being left to wonder why friendship hurts. Friendship is like love. It does not hurt, but feels quite nice.

I look back, and it leaves me looking forward too.

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