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.

Caregivers and PTSD (Trigger Warning)

I have Post Traumatic Stress disorder. It in some ways rules out how I can live my life. Sometimes I cannot bathe because of it, sometimes I cannot eat, sometimes I cannot move. sometimes I can only scream. I fear the quiet after a panic attack, and I still am unable to just cry. Somehow now I can cry over things like William needing a new home but I cannot cry over the fear and panic associated with the triggers of my PTSD. I revert to that child who learned so long ago that if you cry that means you will die. Even writing about this I am triggered. Truthfully I am writing this because I just had several triggers.

I have had to deal with my PTSD everyday because I have a caregiver. My safest way to not have any PTSD triggers is to be utterly alone. Not lonely, that can be triggering, but alone. Jo, my new caregiver, had her second day today, I was squirrely before she came in, that urge to run, flee, hide, or attack and drive her off rearing up. This is normal with new people. I told her I was having trouble and there was no odd stare, none of that “Okay she said she is having a triggering day and mentioned her PTSD what was that again?”

This is new. We attacked my coat closet today, this is one of the places where K the abusive caregiver stuffed a bunch of things she was meant to either put somewhere else or get rid of, or things I wanted there and some of these things were HIS. In this closet we found a cadre of abuses, little things, big things. Painful things. I am hurting. My hands are trying to curl into fists and there is physical pain to write that out. It is somatic pain, and I am pushing on.

The panic hit when she pulled out a comic book. I am a huge comic fan, she knew this with in an hour of working for me, the batman paraphenelia, the radio show on the feed, the statuettes, and of course the actual comic books all are a dead give away. On top of that I talked about them with her. She likes Batman too, and I will get to see the third batman movie when it comes out next year or so on opening day. We made the plan. Still, she saw me freeze, then I babbled incoherently, trying to explain what was happening. I managed to say, “Hide that I can’t see that.” She did. She did not ask what happened but just stopped for a minute. She didn’t ask if I was okay, because that pisses me off and I told her during the interview that is a bad idea. It’s a secondary trigger. She just waited. “I need us to skip this box for a minute, I am fighting off panic.”

Her response wasn’t to rush me, it wasn’t to ignore me, it wasn’t to tell me I was stupid, nor was it a misunderstanding of what I was trying to say. Her response was to say, “Okay.” She put the box aside, and we did something else while I contained myself. We go back to it, this time I am ready, but still it’s bad. We come across one of my wood working pieces that I was told was lost forever, lies are a trigger. I held it tightly and used it as a visual shield against the growing pile of triggers. I didn’t have to see them, and she was patient. A task that when tried before was either full of failure because of my PTSD or was not done properly hence having to do it all over again… a task that I was certain was impossible? This was done with in an hour. Just one! My living room is spotless, william is passed out in happy sleep with the toys that he lost under the door. I know where the triggers are, and we have already boxed them for proper resell.

I am saving for a new computer, as this system is showing it’s signs of aging. It burns me with fear the idea of being without any outlet, without any ability. Being without a computer isn’t as bad as some of the things I have lost but it allows me freedom. She agreed to help me with the removal of these items, where I can benefit from them financially. This, this was amazing. It won’t be an easy task but she is willing to help me juggle my triggers.

I have denied for a long time how disabling my PTSD is, this was self denial. I worked hard for years to shed the triggers but the last year brought all of them back and added more. Every day I plan around my pain, physical, mental, and emotional. Every day, I must be prepared for panic and terror. Having a caregiver makes this harder because I am not alone, and humans make errors. I do not expect my caregivers to read minds.

Jo was willing to work with me to find a smell that was a trigger. A random smell that doesn’t have clear description, wet, gross, evil. Evil is of course subjective. The smell was in my bamboo plants. The water needed to be changed, so we did this, and now the smell is gone. My food was a trigger today, so we worked to find food I could eat. There were unexpected triggers too but, she just did what I needed her to do.

A caregiver has a hard task without PTSD in the elements that they must deal with. They have to compensate for the body and mind in ways that are difficult. Modern society has added burdens to the caregiver as well, some may have to be tech support, or they may have to deal with money, severe allergies, or even broken wheelchairs. PTSD however is also extremely common among the disabled. I know personally that PTSD by itself can be disabling. Post Traumatic Stress can cause agoraphobia, because how can I go outside when anything could send me plummeting back to the worst moments of my life? How can I get food if eating it can make me remember the worst moments of my life? How can I breathe?

I admire skilled caregivers, and now I have had four caregivers, two rotten PTSD causing caregivers… and two very skilled caregivers. It was difficult to let Annalys find a new job, it was horrible the moment I realized that she could not work with me. I felt panic, I feared reprisals, I feared lonely, I feared the filfth I have endured. It all piled up on my shoulders. Annalys was wonderful but I couldn’t explain to her why we could never open the closet of PTSD Doom, I could never explain why things upset me and that added stress for us both. On through her last day she still set the bar so high that few caregivers could match. Jo manages. Jo even gets some of my nerdiest jokes.

Having change is a PTSD trigger for me, even though I often crave it and crave adventure. I have learned in the past few weeks that being able to say why something is upsetting is a huge part of being able to deal with my PTSD. I never used to need that, but because I am dependant on someone else, I need to explain to them the why so that we can ease the triggers. I suspect this is something others do. Jo knows she will not have any coherency from me on Thanksgiving, and will be serving food then leaving. She knows the why, to a degree. This was part of her interview. Jo has dealt with PTSD before. Her skill surprises me.

I am probably babbling now, but the fog is fading away, the shadows of the past aren’t visible anymore. I am still disoriented but that is mainly the vertigo. I am left to wonder, how do those without caregivers deal with these triggers in their homes? What do you do if there isn’t someone to help you and the pain and fear is still paralyzing? I used to have an answer but the answer does not fit. I also know that some of what I did to ‘deal’ with my issues was actually self abuse.

I am taking more steps on my journey, and they are terrifying. The voices of the thousands of moments, the thousand pains, the thousand little deaths are in my head all screaming. Those cries are the last to go, and maybe this time I can mourn for the little girl I never got to be. At least I can cry on the inside.

Another One Bites the Dust (Trigger Warning)

I find it a bit odd to be writing this post. It isn’t odd that I would write about caregiver abuse, but that I would write about it again so soon on a personal level. I’ve been quiet about it because I didn’t want to spoil the surprise for my not so perfect now ex-caregiver K. Remember when I posted that the Honeymoon was over? I didn’t talk about the whole there, nor did I mention that K was going to be fired from that moment, as soon as I could find a replacement.

K was not as bad as the other abusive caregivers I have dealt with, but, she was worse in some ways. She was abusive to my neighbors, not just me. No one should be abused but I have always felt it should just be me, if anyone at all. Not heroically but I don’t want anyone else to hurt. I also was a bit unaware of some of the abuse, still in survival mode. It all hit me at once the other day, but a couple of days ago (That’d be a Monday) things exploded.

Before going into that I want to list all the ways K was abusive that I can think of, partly because I still feel this little niggling doubt, these caregivers can’t be all bad right? This is a symptom of abuse itself. It springs from that old addage, that if the problem keeps reoccuring it must be you. I realize that there may be truth there, but, with abuse it is not the fault of the victim, no matter who they are.

K’s Ways of Abuse:
Tardiness. The instant she was aware that I couldn’t just fire her, she became so unreliable I spent the next few months literally just waiting for her. This meant no appointments unless I wanted to risk punishment, this meant missing religious activities, personal activities, and put me back into that pocket of isolation that I had fought so hard to get out of. This meant also that I couldn’t schedule appointments with other caregivers to interview them.

Offering the Forbidden Foods. Forbidden foods do not just include allergens, which she filled my new kitchen with as she put her own food in my fridge and freezer. This includes offering me food that I specified triggered a PTSD response. Turkey and Quesadillas both to me are the worst food in the world. It’s a bit ironic on that last one but, it is no longer one of my favorite things. I told her clearly when I hired her that these foods were not welcome in my home. If I pissed her off, she would offer it to me, then mock me for being upset if I showed it.

Emotional Abuse. This is a bit of a borad umbrella, springing off of the specified torment above, she’d ask if that was Paul outside, she’d mention how hard it would be for me to escape in this apartment with there being a limited number of exits, she made sure to tell my mother I think she’s a bad mother, she did a dozen little things JUST to hurt me. This included losing things, hiding things, and accessibility challenges though that over laps into…

Physical Abuse. Being denied the ability to bathe, clean clothes, food, etc is physical abuse. So is spiking the heater up to 90 on a heat sensitive person, when they are asleep it is more dangerous. Putting piles of boxes infront of the refridgerator and then not showing up for a few days is also abuse. Making the home in accessible by arguing about where things go and then just putting it where you feel like is abuse. Throwing things, is abuse. Burning food to punish someone for not letting you make up hours you missed by being a lazy (censored) is abuse.

K I sure as hell hope you read this, because I never got to explain to you why what you did was wrong, and your mommy sure as hell never will. It’s also wrong for you to not buckle your child and enforce her seat belt time. If she dies you are liable for her death as Murder. It’s a cold hard fact, and one I hope you never face but, with the way your kid runs around a  moving vehicle and distracts the driver, her danger increases. Oh and that warrant for your arrest? Who will take care of her if you never resolve that….

Snarly side note aside the abuse list is a lot longer but it’s hard. I feel like I lost momentum in my writing. So, since I can’t list every abuse let me tell you why she wasn’t given a nice ejection. The last day with K.

It started out on a somewhat cloudy day, I took the weekend to myself, because the endless waiting has left me a very angry client and Friday she was so late that after asking me to get up early so she could come in and have the afternoon off, I said screw it and locked up then went to sleep. I told her I was doing so. I worked it out with the people who are helping me change agencies, the original plan to ditch the pain in the butt, and they agreed with my choice so I gave K the weekend off. She always complains about how hard the work is, how we never have fun etc, so it seemed like a good idea. Side note here, you can’t have fun if you are late and MISS the fun.

So, Monday comes, I slept a bit late, took my time getting ready, I didn’t know if she would show or not. I unlocked the door, go to the bathroom, and the banging starts. An Unlocked Door is impossible to open you see. So I finish my business and go to open the door. She is HOLDING the knob so I can’t help her. I have to work hard to not show my disgust at this and I go and sit down. First things first I give her a chore, the litterbox. Not to punish her but because after five days it is rank. Five Days. She didn’t do it when she was told to the last time.

Then, I decide to ask for food. This is where it all starts to go wrong, apparently my wanting her to do her job is a bad thing. I bought pizza recently, and decided to eat it. So I ask her to put pepperonis on the pizza and use the oven. She supposedly cleaned this oven but I always put my pizza on a sheet and insisted. Now I am glad I insisted on that because with in minutes the oven, which she supposedly cleaned, was on fire. She set my kitchen on fire.

Instead of turning off the oven, opening windows etc, she runs outside for five minutes. I am stuck in smoke. So I start trying to get the window open, because I cannot go outside without my chair. She comes in and yells at me to sit down, so I do. I am not going to waste energy arguing. She then proceeds to leave the door open, to which I ask her to close it and lock the cats up THEN open it. I don’t know why this is a bad thing, I want to protect my cats. They take care of me. She replies with, and I quote because it pissed me off, “You don’t care about my feelings!” Her feelings? I didn’t think before I spoke, “Not right now, no. Now close the cats up.” I am choking on smoke, she keeps going outside to escape it, and then says that crap? Really? She follows this up with a, “After all I’ve done for you.” I let go. I have kept my anger on a short leash, and this is the first time I have yelled. She;’s already screaming at me, and I am not going to have this dumb (censored) in my (censored) house. I cursed too. “Get the (censored the F word) out! You are FIRED!” Somehow, I managed to double yell Fired.

She kind of stood there for a minute, so I got up. I am half expecting her to hurt me, because with everything else? Why wouldn’t she? So she storms out after I grab my grabber, which is metal and solid. Yes, I armed myself just to feel safe. Also I was wobbling badly so I used it to balance and moved forward. She moved back and then threw my keys at me. Then Her keys. Then she stormed out the gate and I locked up. My neighbors and caseworker showed. Kat my caseworker, I haven’t told you about her yet but she’s fantastic even if we get the name giggles, was already there with another client and came immediately. My neighbors all checked in on me and have been regularly when Keera doesn’t show. Since she abused them too, I don’t blame them for staying away when she is here.

I have been alone for two days, and I have been great. I get quiet time, instead of incessant texts that show her illiteracy, not just text speak but gibberish to those who KNOW text speak, chain letters etc. Now, she did steal from me, and that last day took some of my morphine. She also happens to owe me money. Will I ever get paid back? I will sue her if I have to, because she signed an IOU for the money. I decided it was worth it. I even put in an addendum that states that if she doesn’t pay by a certain amount of time, then there is interest added on. She signed it and we each have a copy.

I win. I am good right now, and I also know that I really do win. How can I not when I am strong enough to make my way out. I can’t share everything with this space because I mean it when I say there is going to be legal action. I can handle it. She probably can’t. I (censored) Win.!

Whatever Happened to Baby Jane? (Trigger Warning)

Bette Davis, Joan Crawford…A movie about the horrors disabled people can face with an abuser.

This is one of the most wonderful but horrific films I have ever seen. Joan Crawford plays an actress with a jealous sister who not only tried to kill her but is now her only caregiver. Bette Davis plays all of my worst fears brought to life. She forces Joan to either starve or eat rats, her pet bird, or possibly poisoned food. Their maid, a beautiful African American woman, is the hero in this. It is she who sees the potential for something wrong and refuses to leave the day she is fired, instead insisting on seeing Joan’s character. It is she who saves her from embezzlement, being isolated, beaten, and left to die a slow and horrible death. She was cut off too, no telephone, stuck upstairs, the bell for help taken away. It is horrible to watch.Bette’s performance is that of pure evil, in the loveliest of forms.  The genius of this film is that they use clips of the actresses when they were younger. They build the story up and you feel the pain involved with Joan’s treatment.

This film also highlights the incompetence of others, enabling the abuse. The teller who illegally (possibly not at the time of the film being made) gives cash when a deposit is required. The neighbors who ignore the weak cries for help, though they may not hear. The doctors who ignore the patient’s panicked cry when she could under duress be recanting. I will not spoil the climax of the film, but needless to say, this one touched a nerve. There is murder in this story, no one wins. Hope is torn from the viewer and Joan’s character.

Gaslight with Ingrid Bergman is another film that taps on true life abuses. The abused housewife is not beaten, but is instead told over and over until she believes it that she is insane. His greed is what drives his crimes, polygamy, identity theft, and murder among them. He uses the technology of the day to prove to her she is insane. He too plays on my worst fears. He proves to me that men are evil, a blanket statement that feels utterly true while I watch this movie. It isn’t, but it feels that way. He abuses his wife, publicly and privately humiliating her, forcing her into things that were against her nature.This film was so effective it gave it’s name to an entire term in psychology. Gaslighting is the proper term for causing someone to think they are insane. There is more to this of course, but this is the best I can do to explain right now.

Why am I posting about two films made before my birth? They touched me. They burned my heart up and left me shuddering with memories. They triggered responses in me that were deeper than perhaps intended. I felt the trappedness from my previous experience. I felt the worthlessness of knowing I am wrong at all times, and that my only value to others was at their own pleasure, my own wants and needs coming last. I felt the fists of my father in me again. I felt the harsh words of burden.

I am not a burden, I am not insane, and I am free. I had to chant this at times, the wheelchair a prison during the entire time. I could see even one stair trapping me. I can only remember too well  how few people actually listened when I cried out for help. The cold stabbing feeling of being told my case was not compelling enough to prosecute, that no one wanted to protect a child from  her rapist father.

Caregiver abuse is one of the worst crimes I have ever heard of. Some call it elder abuse, but, elderly folk aren’t the only ones trapped by their bodies. Many are vital and amazingly resiliant. I am posting about these films so that you can perhaps try to feel the things I felt, in lesser measure. These films raise awareness of the plights of the hidden victims in this world. Perhaps even someone you know is enduring secret abuse. You might not be able to save them, but raising awareness even by one, can help them save themselves.

Whatever happened to Baby Jane? Be glad you are not so evil, and if you are, may you see your reflection and set your victim free.

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