The Institute and the Adult (Trigger Warning)

I just wanted it to be in my head. I realized after losing a caregiver because the caregiver broke down mentally that I wanted the problem to be me. I was crying, struggling with the feelings that come with being vulnerable and endangered, struggling to get food, and the pain that comes with moving my body in ways it cannot really handle. I wanted it to be in my head.

If all the problems were in my head and were not real my life could be as it once was. For a moment I had everything, I had love, happiness, my health was improving for the first time and then… it was snatched away. I was starting to feel whole again. Then, I was snatched once more back from the brink of success. Even personally success in this world is a struggle for most people. The minority that masquerades as a majority has made it this way. I just wanted to go back to that place, I imagined it all.

Some of this comes from how much easier it seemed on the surface when all my disabilities were fragments of my mind, that nothing was really wrong with me. I just had to stop making it up. I just had to get a better grasp on reality. As I think in music and color rather than words, the thoughts surrounding that are truly discordant violin notes, the colors brackish. It’s a sensation of mocking. That life was a mockery of life. I was ill, and as long as it was in my head there was no hope of recovery.

If the issues with a caregiver turning violent were just in my head, then, I would still be in danger. That urge to put it all in a neat little package is dangerous. It’s a form of denial, though this denial is socially acceptable. It stems from my being medicalized at a young age. Nothing can just be, it must either have a cure or be a figment of my deluded little mind. Delusion can be comforting. Delusion means that there is nothing I can do about it but stop thinking. Reality requires action.

I am tired of action! I am still haunted by the sensations of my day. That prickling fear as I heard the first crash. I let it go on for a half an hour before I confirmed it. I let myself think it was just me being “jumpy.” Jumpy is code for triggered. I couldn’t ignore it when Sprite began to scream. Sprite, even when she signals things to me is a very quite service cat. She tends to use her paws and a soft flittery meow or a purr instead of a yowl. She yowled. The sounds in the other room were growing louder.

I had to choose. Do I risk my safety and my service animal’s saftey in order to retain this idea that every time I am afraid I am just being delusional? How many times did I do that with my ex-husband before I accepted that he was hurting me? I can’t be sure. However, today I didn’t let it get past once. I had to give up my delusions. I chose life.

Life is never easy. I suspect the main reason that the temporarily able bodied among us want our lives to be inspiring is they cannot concieve of happiness with a disability, as most of them are not happy. They spend their existance toiling for the gain of others. This is less so in countries outside of the US but, it is still a blatant reality. Some of these persons may also be in that same delusion about their ability, or other issues such as sexuality and gender. They waste their reality on delusion.

Since I became aware that therapists are not all knowing, and that my Mother has been desperatly wrong, I have faced delusion many times. Still it can over ride my own instinct to surive. I sit here in a room with the acrid odor of cleaning products, something that is avoided when they are used properly. The antisceptic odor makes me feel almost as if the institution is right there. That is the entire core of it.

If the issue is in my head, then I am outwardly safe. If it is in my head I can handle it. I can control it. If it is real, and no one believes me, I am at risk of being locked up. The core of my terror in speaking out today was in losing my freedoms, because a caregiver has more power than I do. After the agency head Robert spoke with my now ex caregiver today, he confirmed that she admitted she was over reacting to the situation. I don’t know what her future holds, but, I worry for her. I worry too, for anyone in danger that will stay there for fear of the instutition.

Some of the people who come across these words will state, “It can’t be that bad.” I still have nightmares, usually around the times when I have to fight the hardest for my right to merely breathe about the institutions. The place I was was actually not that bad compaired to many. Still all the labels thrown at me, the drugs that made my brain numb and my body bleed? Those were terrifying too. The threats that I would have electroshock therapy used on me if I didn’t behave a bit better. The behaviors that they threatened? Those all consisted of things like avoiding things that made my stomach hurt at lunch, having trouble sleeping, and having nightmares.

Some of the staff were wonderful. I remember their faces in flashes, and the comfort they brought. I remember the coldness of the beds, the tiny windows with bars, and the high fences where the only bit of reality I could see was the top of the bank building where my Aunt worked as a lawyer’s assistant. I remember more the cold showers, being watched. Not being allowed to pee without being watched. I remember the male staff with those. It was never female staff.

I remember the mean staff the most. I had to think hard to survive around them. Some locked me in isolation for tripping. Some punished me for not knowing a new rule that no one had bothered to announce. One in particular made fun of me for gaining weight when I started to eat again, after being a small child with an eating disorder. I managed to conform so they wouldn’t drug me by force. I took all the pills, even the ones that made me sick and lose time. I did my best.

I remember each tour of every facility. Once my mother was gone we got a second tour. We were shown the isolation room, the one with the bed and straps. We were shown their needles. We were told added rules. There of course are always the secrets and ways that a kind person in there may share on how to survive. Each place had it’s special etiquette. Yet always, in each one I was watched while bathing.

There was the one place that is technically an institution that I do not count as such. This is the only place that helped me. The difference there is I wasn’t treated like a waste of flesh but I was a person with needs, responsibilities, and the ability to help someone else.

It is thoughts of the institutions that hurt me that I think of when I must tell someone in authority a truth they dislike. It is threats of such places that keep me struggling to be somehow better than my reality. It is a terror that comes with knowing that as an adult the institutions are forever, and they are far worse than any I had as a child.

It is with that in mind that I wanted my fear to be something caused by a personal insanity. If that is the case, then I never have to speak up. I never have to say a word. I never have to fight. I don’t have to find a way to call for help. I can just mourn the loss of supposed sanity and keep trying to live on the “outside”.

The last place I left, I was told I would be locked up again with in five years. I was told I could never function as an adult in society, that I was hopeless. This was said by a therapist. This was the one institution that helped me. My mistake, the thing that earned me this ruling was telling the therapist, “I don’t think all my pain is somatic and I think it’s okay for me to be afraid I will fail.” My mistake was in believing that something was not a mental health concern, and in believing that I merit feeling what I feel.

I almost was not let free based on that conversation. This was also one of the better therapists of my childhood. Today, I declare myself free. None of it has been in my head. None of it will be. If something is in my head as a fear related to post traumas, depression, it does not mean I have to live in a cage. I promise myself now that I will not exchange freedom for a lie because I risk being caged. I am caged by those lies more effectively.

Emotional Agony

So often, I find myself belittling my emotions. This is another practice from childhood, and it can defeat me. It sets me up for failure, infects my heart with discord, and leaves me acting as an Angry Cripple. It is a challenge to fight the urge to tell myself how little my pain matters.

recently I have been displaying some of the life long bits of my soul here, many of which bear bruises and scars. This is painful. There are over 100 posts that have been written but you will never see, because they hurt too deeply. Some have been rewritten, to remove the deepest secrets, hiding them.

I realize this is not something that is unique to me, and is instead very common especially with Women who have disabilities. A disability is anything that interferes with functions of daily living, and therefore I do count mental health issues as disabilities. Not all disabilities are so severe that you alter your life and build it around them, but, that does not mean your reactions to those “minor” disabilities have any less validity.

I am writing this post, because I have heard five times in the last two days, read it twice, and tried to deny a growing anger that these words cause this lovely statement, “Just looking at you, I realize how little my pain matters.” This is crap. This sort of thinking and self devaluement leads you down the path towards self hatred. Self hatred is usually just a mask for inner pain, layered with anger and other poisons. Stop it.

I know, my body is a very good example of what you do not want to live in. My body is not your body, and although my pain is epic to me, there is someone out there who has it worse. I can name names, I know of faces, and there are people who walk, that still have it worse than I do. My pain is equal to yours, not less, not more. Equality in Pain is a concept that I learned about when I met a girl in the mental health ward. I was actually addressing the issues of my sexual abuse, and, she tried to empathize, revealing why she was there.

To me, the reason, not revealed because of confidentiality and respect of this person, is small. It is insignificant in my estimation of abuse. To her, it was earth shattering. Her world exploded. It took me a lot longer than my stay in that facility to understand the concept offered there. What we experience shapes our views. I cannot show you what I see, but I can try and paint a picture for you.

There is no reason to compare experience. Identical Twins rarely share the same outlook in life, every person is as unique as a snowflake or a butterfly. None are identical, despite outward appearance. It is rude to devalue them or yourself based on your own experience. This brings us of course to racism, ableism, and sexism.

When you say that racism does not exist, it is not truth. It is perspective. You deny someone else’s experience and that wounds you both. You might not understand their anger at your words, and they might lose respect for you. They may not understand too a lack of experience. This does not justify your denial of racism, but, the caveat is that you can learn from the responses to such statements.

Equality is in my estimation impossible. I am an idealist however, and fight for the ideal. Someday, I might just be proven wrong. I do not remember the author though I think it was Vonnegut, but I once read a science fiction story where everyone was made equal by devices that made everyone see, hear, and think at equal levels. They even ate the same food, very bland, all people were the same. This world was horrible, everyone was in pain, tormented, and unable to function.

This was normal for those characters, until one could not be contained. He was above average, so far so that the devices could not contain him. He became violent, lashing out to try and wake the people up. It did not end well. I think of this story often when I forget why people are different.

I do not want to be just like you, and you definately do not want to be made physically equal to me. I would not wish this body on anyone. I also wouldn’t trade it for yours. I couldn’t function with another body or mind, this is what I know. Your pain is pain. Your anger is valid. Your tears, your joys, all of them have as much importance as mine.

I have said this outloud to people, before. Trying to make them stop. Sometimes people devalue their pain in an attempt to pity me. I need no pity. I am a brilliant star burning in the sky, and I know it. No person needs pity. Those who pity are merely blind to the simple fact that everyone is valid, necessary, and capable of something important.

Before you protest, stating that people with cognitive disorders cannot be productive in society, let me correct you. Autism counts as a cognitive disorder, though, it makes my world absolutely brilliant and colorful. I couldn’t trade up, just down. Downs Syndrome doesn’t make a person invalid. Every person with Downs I have met experiences more joy than I can comprehend. You point out that those in vegetative states do not add anything, and, I say bunk. What they did before their brains were injured counts. Every living person has a right to fair treatment, health care, and love.

Emotional equality too, prevents the need to debase someone, to be better than they are. It merely exists, as we do. I exist. You have the right to exist. I am angry for those who cannot see it. I mourn, for this knowlege is powerfully freeing. I dance with butterflies, I sing with the birds, I exist merely as I am and can be nothing else.

You are valid. Go love yourself.

The Doom Ship

Not everyone gets to ride the Doomship. I ride, others ride, and yet I often take it for granted. What is the Doomship you ask? The Doomship is the Ship of Life, riding towards the birthday of Death. It sounds horribly dramatic and is.

Children born with serious illness are often told, “You won’t live to be 21,” Or something similar. I have a list of birthdays that have passed, my next is another Doom Birthday. When I broke my back, and it was first diagnosed I had a series of doctors tell me that my organs would fail by 25. My birthday isn’t for a few months, I was reading blogs off of the Disabled Blog Carnival and started reading Temporarily Disabled. Not only is this a great read, though with each post I tend to cry just a little for the child who was aching and the pain she has been through. She turned 26 and posted about the Doomship, sailing past into the great unknown.

With Doomship Birthdays past, it is like looking at a precipice of great unknown. I know I am going to live past 25. I am confident only due to surviving so long. These waters are familiar. I am pensive too, due to my Annual Cancer Scare. I get one a year. This time it is my reproductive system. I had my annual blood work done and my white count is high. My pap came back with abnormal cells. We’re redoing them both to verify before any panicking is done.

I waited three years before getting a pap, because no doctor would accommodate my need to not be in their perfect position, or to even help me balance on the table. I can’t do it myself. I need someone else to help heft my carcass around. I know if I do have cancer I won’t die. I will just get over it. My doctor is more worried than I am.

Right now I am surrounded by everything I have ever wanted. Not the things like the toys I never had, but the love I most desired. On my right I have Sprite, the service cat, curled up and purring against my back. She is helping me to not spasm so I can type the words out. My body is rebelling. I have on my left William drooling into my shirt, and every so often poking the keyboard with a paw to see what is so fascinating. He sleeps, then paws then sleeps a bit more.

In the other room my Person is puttering around, doing the dishes after making a meal of my choice. I had spaghetti with sausage meatballs. I haven’t had meatballs in a long time, but he made them for me, tolerating my lewd jokes. My home is clean, my bed is comfortable. My friends and family are far enough away and close enough at the same time. I even have high speed internet to keep me amused on those days when movement is unacceptable.

The Doomship sails on, the waves splash, the thunder crashes, and my life flashes before my eyes, but, it is the life I am living that I am proud of. Not the memories, not the past. It is my future that holds me in it’s sway. I reach for it, sitting in the prow, praying to my gods, listening to the world, and taking part in changing it.

I write something every day, and each time it is self discovery. I discovered I can write non fiction. I never knew I could. I know the mechanics of writing are sound, as I sell fiction periodically, and write it almost daily. It is merely the fear of my life that has held me back. I feared upsetting those with the power over my life and death. I am now the Captain of my Doomship. I mutinied.

So, as I rest, my ship swaying, I look out and see that everyone else is in a Doomship too, they just do not know it. They do not prepare, they do not adapt. They aren’t aware that they have to. Red sky in morning sailor take warning, the storm is coming and the night is humming… wait not for the red sky at night, for on the Doomship there is no Sailor’s Delight.

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