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.

Post Traumatic Stress Disorder and Advocacy (Trigger Warning)

In conversation with one of my young friends I had a revelation. This was about thirty seconds ago. Sometimes advocating triggers flashbacks while I am trying to function. My mind lept then to other people who have to self advocate through PTSD symptoms. It isn’t always a flash back. If you do not have PTSD it might be harder for you to understand being jerked around by past trauma. Therefore I am going to explain, and this is why there is a trigger warning on this post. Sometimes reading about PTSD or other issue related things can trigger people.

This is not from the DSM (Diagnostic Manual thingy) but is from my experience. I may leave things out that apply to you or tell you things that don’t. The problem with labels is they are often not enough to truly explain what something means. Lets say someone shoots a gun. My first impulse is to be very still, not breathing, and praying that my father won’t make the shot. Even typing that sentence my head went into the land of fuzz and my chest is tight. I am taking slow breaths to focus and clear my mind. The trigger is not always a gun but just a loud pop. My brain is stuck on certain points of the abuse I suffered, it has a programmed loop that it likes to play. I have warning symptoms for my flashbacks now, and can often circumvent them.

My reality is in jeopardy from these loops. the weakest symptom is a tingle, intense fear, sometimes I start randomly bleeding. Why do I bleed? One theory a psychologist offered is somatic symptomalogy. Basically my body remembers, and it reacts so strongly to what my brain signals, that it thinks it is injured. This adds to the pain I feel. The pain from invisible injuries is far from phantom. I feel it. The next step after that is the sensation that I am floating, I disassociate and can see the entire world, but I am not connected to it. Usually I then go back in time. I see and feel at the same time, from multiple vantage points my father with his brand new gun, me and my siblings on the couch. I feel the cold metal of the gun pressing against my forehead. My nose stings with the tears I cannot shed.

The loud bang comes, I feel the heat of the bullet, my skin is burned by muzzle flash and I feel a horrible pain as the bullet grazes my temple. I don’t move. I don’t scream. I just stare up into that black hole, smoke pouring out of it and avoid looking into my father’s eyes, knowing he is going to be angry that he missed. I hear every word he screams again, how worthless I am, how I should be dead and must have moved. My sister starts to scream, my brother too but I can’t move. I look into his eyes and I see the blackness.

I still do not remember what happens next, though I have been told he decided to shoot at my sister, but I pushed her aside. I just know he tried to shoot his children, sitting on a couch that smelled like pee, and nearly killed his neighbor because the bullet went off. The cops were called but I took the blame. I said I was playing with his gun when it went off. I lied, to survive.

When I come back to myself I always want to vomit. Instead I focus on breathing. If the nausea is really bad I will take some Rolaids. Sometimes now, after years of effort, I let myself cry. Usually I manage a tear but my brain has yet to grasp the concept of tears. If I am not at home, it is worse to recover. At home I control my environment, I have a bed to curl up in, two soft fluffy cats, and my Person can go elsewhere more easily giving me the time I need to recover.

When I am advocating and flash back, I never know what to do. I try different things, and usually they work but the vulnerability can be debilitating. I flashed back my first time having to seriously advocate to that scene. That is why I chose to relate it to try and explain what PTSD is like. I wish I had simpler words but none can encapsulate just how much there is to it. Sometimes the flashes are different, sometimes I am still an adult but I am trapped, it is worse in some ways because I still feel the pain but I am completely aware that my world has vanished. I am never certain if I am going to hurt someone. I have before, but it has been a long time.

That first taste of advocacy was so bitter. The cops came, and one fondled his gun and my brain shut down. I was afraid, in pain and exhausted. I was being yelled at and deprived of my prescription because I needed my service animal. The cops even saw Sprite follow her training. When I flash she has three tasks, beyond her instinct to comfort me. First, she signals to my Person for help. Sometimes a conversation can end it. So she chirruped at the person of the day, and I had to form the words, “I need you to deal with them for me. I can’t.” Then, she helps me to sit. I had to wait fifteen minutes for a chair, I wanted to scream at them but I tried to stay calm. I was hyperventilating, they took this as my being dramatic. Then, she moves to my shoulder. Her instinct is to sit on my chest, but she might get flung there, I do not handle pressure on my chest well even when not panicking or flashing. Her instincts tell her to purr, to rub with just her face against mine. This grounds me.

The police threatened to arrest me if I did not leave the facility. I knew enough to know they couldn’t but they refused to acknowledge that I had rights. I couldn’t fight, but I had to. I chose then to repeat the law over and over. I couldn’t think, I couldn’t see their real faces for half the time. All I saw was my father and his eyes that reflected no light.

What can you do if you have PTSD and are an advocate? Here is the how to portion.

Step 1. Before you get to the point of advocating, have a support structure. This is a difficult process, because not every person can truly understand what it is to lose your reality. You need to have someone you trust availible, at least to call.

Step 2. If you have medications used to treat the symptoms of your PTSD in an emergency make sure to carry them with you, to keep a back up dose with your support person, and to keep your doctors number handy.

Step 3. Create a kit of items that help forestall your flashbacks. Nothing works for me beyond my cat. I can give her the signal she is trained for when i feel the warnings coming and ground. This is all I have right now, beyond my Person. No meds, just those two.

Step 4. Remember to breathe. Sometimes if you focus on just breathing you can help yourself.

Step 5. If you flash back during advocacy, try and focus on the responses that do not match the memory. This has worked for others, pulling them out.

Step 6. Advocate anyway. I did get the illegal policy over turned at the Pharmacy where I was threatened with arrest. I had to fight for a long time to do it, but, they relented. It is worth it even though it you might feel endangered or might BE endangered by your flashbacks.

Step 7. If you have to, stop. This opposes Step 6. Not every incident can be worked through. You might need to call your therapist, you might need to let your support person advocate for you. This is not a failing, this is merely the team network that advocacy should be.

I am glad to write this how to. I never considered how important it could be, but, in my mind my broken back, my asthma, and my failing eyes are not my most dangerous disability. The worst disability I have is PTSD. At times during flashbacks I have hurt myself, my friends, and reliving the painful memories can also cost me emotional, physical, or mental progress.

Keep in mind the time you are most fragile is just after a flash back. Some people can be triggered more easily, often it is easier to react in rage. Do not minimize your pain either. It is okay to cry, scream, and sometimes to just walk away.

I have done all of the above. Not every incident with advocating will cause a flashback either. Most of my time advocating I am left with memories of victory. My first taste of advocacy is as sweet as it is bitter, because I still succeeded, despite my unabiding terror of these men. My greatest cause was also revealed to me. I am actively fighting to get the local police trained in how to deal with enforcing the ADA. I want my rights protected, I do not want to fear being put in jail, dumped out of my wheelchair and my service animal being put into Animal Control’s care.

That was the threat, and so often is. My heart goes out to any other advocates who suffer from PTSD. I know each person’s PTSD is varied, some may not flash back, some might just panic. Others might not be able to stop their flashes. You can still advocate. Just prepare yourself as best you can.

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