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.

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.

Medicalization of Humanity

I have spent my life being a patient. Most people do to an extent but a lot of non disabled people do not wind up in a doctor’s office monthly. Those that do are usually seeing a psychologist. I have been talking to my biological mother again, because she needs my help. In exchange for helping her with training her dog to be a Service Dog I asked for payment in therapy. Not literally, but, figuratively.

I think she was startled but, I am wounded emotionally. I am so angry at her, and I need to forgive her. I can’t do that without working out some of the issues and I want a mother. Some of the things that have angered me include over medicalization of my emotions. Being human has never been an option for me, despite the obvious inability to escape it.

From reading my blog you know already I have a history of abuse and chronic illness. You might have also noted an undercurrent of loathing for labels, though I am working to embrace mine. Some labels cannot be avoided. After becoming an adult I went and paid for a psychoanalyst to evaluate me. I wanted to know if, without my mother’s influencing them with her fears, I was really as insane as everyone told me.

I did this because I didn’t feel crazy. I felt depressed, but, not crazy. I did not think I was becoming a sociopath like my father. I put effort into fighting that, and won. What I did, to help prevent influence in this doctor’s office by my past was withhold information. It took several calls to find a doctor willing to work with zero patient history, but, the woman who did the test with me understood my need to find the truth.

In my childhood I was diagnosed with Borderline Personality Disorder, Bipolar, Depression, and a slew of other labels that never quite fit, including Multiple Personality Disorder. Most of these get renamed with each DSM, and with number V coming out (I don’t know my roman numerals and I am not looking up the translation, it is either four or five), I am again feeling pensive.

Part of it is the sudden ability to cry. For the first 23 and a half years of my life I could not cry without bleeding. I cannot seem to suppress my tears anymore. Again, some of this is because of effort though the effort sends me receding into myself at times. With that test, I was freed from the stigma of most of the labels I had received.

Those that stuck are depression, lower case because it is something that is perfectly natural considering my family history and personal history. It also is not something I will ever treat with pills again. Another is obsessive compulsive disorder. I need the world to be in order, and this comes from my past. Anything out of place could cause a beating. My disability has helped me with this. I cannot order the world, and I am healing because of it. I had no way of cleaning my room for years, it was horrible.

The test also helped hint at something else, I am Autistic. I have Aspergers. I haven’t told many people, just my Person and my mother. Now the world knows. I feared the Stigma of Autism. My best friend (All my friends are my best friends) Maxis is autistic and helped me to realize that my Autism just lets me be me. It has made things more difficult in some ways but I have adapted, and am extremely high functioning and no one can tell. My labels are not readily visible.

I also am an adult with Attention Deficit Disorder. I adapted as a child, after taking Ritalin. The Ritalin made what turns out to be a side effect of the autism, my extreme sound sensitivity, worse. I couldn’t stop screaming, all my pain was there, and of course I turned out to be allergic to it. My mother pulled me off of the drug despite my institutionalization. I recollect hearing her voice through a closed door, I was curled up in a corner in the Time Out room, being punished for not brushing my hair. My mother had come to visit and I had cried telling her how loud everything was, and hearing her tell the staff off for drugging me was the best sound out of all of them.

I am still sound sensitive. I can hear the sounds most people tune out. When a computer is turned on, each second I hear the scraping of the needle in the hard drive. it is deafening. I have five running right now, and have adapted to the cacophony of my world by adding more stimulus. I have yet to find true silence, even with a power outage but that is the best peace ever. Still, having mental distractions helps me cope.

I find it a bit ironic that being nearly deaf in one ear has not decreased my ability to be overstimulated by sound. Overloading is so far what works best. The great part about hearing everything is hearing my cats purr, when no one else can. Sometimes that sound is the best in the world. My nerves have always been just as sensitive, my skin feels too much and that can cause even the touch of William’s paw to have me crying out.

Still, in my life more damage has been done by mental health practitioners. I have been supposed to find a therapist for almost a year. First, I used the excuse of insurance, which did not cover without a copay. Then when that was fixed, I used the excuse of truth. I do not want a Therapist. I really hate them, and do not trust them. I am aware of my need now, to find one. I need someone to work with, so that I can help myself and my mother.

I remember my first Therapist. Her name was Candy, and my father upon finding this out asked if my Mother was taking us to see a stripper. He thought it was funny, I thought it meant that the doctor tore up paper. Instead, she told my mother that she could change my father. She told me and my sister, we all shared the sessions, how women must learn to cook and my bruises and burns, were just the signs that I was going to be a great wife.

I never believed her. My sister did, and when I told her at night that I thought that Candy was insane, she told me that she is a doctor, so therefore I must be wrong. I kept it to myself but at the age of four I just told her things I thought she wanted to hear. My father was sent to a mental hospital after attacking a man, or something like that a year later, and my mother did not let him back in, despite Candy telling her we would all go to hell. I think the woman let her religious tenancies effect her job.

The next therapist I saw was the one who had me put on my first Antidepressant. I was almost eight, and Doctor Baca decided I was depressed. Likely he was right but he never let me address why. He wasn’t a listener but talked about how I needed to try harder in school, how I needed to bathe more, how I needed to do things to be popular. If I got a word in edgewise he used it to shame me. I had begun to develop breasts, and upon relating the nickname I had at school, because my bra broke in Phys Ed, he agreed. I was slut shamed. The Nickname is not related here as it reveals the name that I have shed, but it contained the word whore.

The list of bad therapists goes on and on. No person is perfect but even the best amid them just wanted to label me. Many tried dangerous tactics and all of them post Doctor Baca insisted on medications. I took so many pills, and many had adverse effects including causing me to gain 100lbs in a month, but, the pills were more important than the girl. Each doctor took any crying as a sign not of emotional release but of depression. If I was happy at all it was a manic, if I was angry it meant I was psychotic. I lost touch with emotion itself.

My response was to try and kill myself, though, I couldn’t figure out how and asked my mother to help. The first time wasn’t the cause of my institutionalization, though the threat was leveled. I just didn’t comprehend it. The suicidal ideation passed and yet my brain warred to follow the rules that were leveled at it. My needs were far from met, and my Autism being undiagnosed meant I had no help. I was adrift, and lost.

The worst weekend of my childhood came then. I was beaten to the point of nearly dying, and denied medical treatment. There is much more to that story but it will not be blogged about, my fear of being attacked over it is too strong. My entire life was changed at that moment however. That is the hinge of life for me. That too, is when my personality changed the first time. The direct result of head trauma. That is the weekend where the first breaks in my back were had, my Xrays showing as an adult that when I was about eight I had four vertebrae break in my back, two in my neck. They healed well enough thankfully but I was in agony, I was alone, and I knew that I should not trust anyone ever again.

I was also threatened with food. My father had decided I was fat. I wasn’t yet, I was perfectly healthy, but he decided I should stop eating. He also instructed me to cut myself, though I did not manage that one. I did manage the eating disorder. He had told me too, if I did eat he would know and would beat my mother to death. I had to protect her. She always has needed my protection. So I gave up food. It was not hard, due to the pain.

Pain is the best appetite suppressant I know of. It kills the urge to eat in me, and is the reason for many people becoming malnourished with access to food. I lied to my mother the first few days and told her I wasn’t hungry, but, then she told me my refusal to eat hurt her. If I didn’t eat she’d surely die. Catch 22. No matter my choice she would die. I decided to eat, then, I would just throw up after dinner. Then my “daddy” couldn’t kill her and she wouldn’t know so she wouldn’t die.

This worked for a while, and my stomach stopped hurting and my skin even healed from some of it’s symptoms of allergy. I was however, bulimic by the diagnostic standard. No one asked why I was bulimic at the tender age of eight. My family didn’t figure it out very quickly, but, eventually they did. I am sure I had a decline in health. My memory was very foggy, and I had begun to have bursts of rage. Perhaps this came from the head injury, the painful seizures that I had started to have, hiding everything, or the burden of the household falling to an eight year old girl. It could even be the bulimia, the overdosing of drugs by my doctors, or, all of the untreated genetic ailments.

My stepfather had begun molesting my older sister, he was too afraid of me to hurt me, so I shaved my head. We discovered then how misshapen my skull is. My skin had begun to split on my breasts, and I thought if I was a boy then I would always be safe. I was of course unaware of the stigmas that were to come, but, I thought being male would make it all better. So, I tried to cut my breasts off. I failed, and for that I am grateful now. I am not sure what the therapists told my mother about all of this, but, from my perspective no one took into account that something might be wrong physically or that the abuse took a toll.

I was taken to a hospital, dumped off, and my mind and body were invaded. I do not know why these doctors thought a physical examination was necessary my first night there, but, they gave me a complete physical, including a pap smear. There was no explanation, but, I lashed out. My first night there was spent in the padded room of solitary confinement.

Diagnosis were tossed at me like darts at a board, seeing if one could fit close enough. Most of the girls there were suicidal, all of them had been molested or raped. Each of them had been battered, and all of the children were in pain. The staff were not all kind. One of the male staff would hit me, but I never said a word. He told me if I did, he’d see to it that I did not get to see my mother ever again.

My hair is also complex. Only half of it is curly, and this is all in the under hair. I had to bathe twice a day there to pass their cleanliness challenge, because of the Hidradenitis Suppertiva causing excessive sweat. I was allergic to the shampoo and cried each time I bathed. They gave me more antidepressants.

I mentioned once, how much my body hurt to the doctors there. I was quickly learning though, that all they wanted was for me to suddenly become a normal child. I wasn’t sure what that meant but noted what the children who got to go home endured. They could not yell, they could not scream, they ate every meal but not seconds, and they were nice all the time, if the adults were looking. I began to master the system. This meant no crying, so I got even better at being a machine. I let my world fall into their system of order.

I did go home, but, I couldn’t keep up the act of perfection. So, the cycle hit over and over again. I still couldn’t eat but was gaining weight. I was shamed for it. I was stuck then in either my mother’s clothes or sweat pants. Time passed and I was a teenager. My first period came on the eve of another hospitalization. I thought I was dying. The inability for people to discuss this function without clinical talk or shame had cost me knowing that this was going to happen. It didn’t help that my mother had told me all about how evil my Uncle Verne is. Verne is a rapist, a pedophile, and of course he would surely be out to get my mother’s children.

She had me stay with my grandmother while she made arrangements to have her crazy and devalued daughter locked away. My uncle called. Grandma had left me alone, despite my mother’s very valid fear that I would kill myself. I was considering it staring into her medicine cabinet when the phone rang. This was before caller ID hit that small town. I thought it was my mother. I thought maybe she had realized that the kids at school were mean, my hands hurt, and so did my stomach and I just couldn’t live like that. It was a strange voice. His voice was raspy, cold, and hearing me he sounded suddenly excited. I talked with him for a while, until I realized who he was. We didn’t trade names but when he called me by mine, I asked if he was my uncle.

There it was again, that duality, I was told by my mother that upon pain being dealt my way, I must never be rude on the phone. I was also told I must never let my uncle know where we were, who we were or to hurt me. I was terrified. Then, I felt warmth running down my legs. I remember what I said, “I am sorry Mr. Uncle Verne, I have to go now. I will tell my Grandma you called.” I hung up and went and sat in the tub crying because I was bleeding.

I thought that I was going to die, which, saved me from my suicidal thoughts. It was partly there because so often I was asked if I wanted to die. The idea wasn’t original to me, though I may have wound up having it anyway. I am not blaming the doctors, as without them I still would have died, I am merely questioning their methods. For every emotion there was a label, a drug, and a punishment.

For my fear of my period I was told I was a misogynist. I hadn’t even known what that was, but, upon being told I hate women, I thought it apt. At that time I wasn’t aware that self hatred is not the same, and the over labeling and medicalization was helping me to dehumanize. I was instead a child trying to make people love me. At this time my memories of my Sensei had been suppressed, and yet the mark of them remained, I was subconsciously seeking that same love.

The rest if my timeline, up until the Ranch, mentioned in earlier posts, is a blur, a mix of self hatred, cruelty, and a few bright moments when I went off the medication without telling people. Not all of my memories were destroyed by the meds, and the medicine did help me learn to control my flashbacks. I was so lonely however, unable to make contact with myself, isolated, and then something amazing happened. My freshman year of Highschool, I became the Valentines Princess. In my school this was on par with the popularity contests of Home Coming Queen or Princess and Prom Queen. My classmates elected me, and openly made this truth known, because of the simple fact that the most popular girl in school was pregnant and did not know who the father was. The pregnancy was not the issue, many other girls were pregnant too, it was the culture of this town. If you were not sexually active you were not acceptable. It was that she had cheated. Perhaps it was a form of slut shaming, but I was only aware of the fact that I had won. I had been chosen to represent the beauty of my class, a symbol of the perfection of love.

These memories are so crisp, as is the memory of my sudden happiness ending, realizing I had to tell my mother that I had won and needed a dress. There was no way I could take the title. I went to tell the coordinator, another student in my class and she found me first. She had already talked to the other wealthy students, and they were going to pool their allowances to buy me a dress, a trip to the salon to style my hair and they were going to have my hair done. They also were going to give me a free ticket to the Dance. At this point, my mother had left my Step Father, and money was so tight we could barely afford food. When I told her however, I expected anger and was given joy. She was happy for me.

We went through the rituals of beauty, I even shaved my legs, ignoring the pain that caused. We had my hair done, and, when I walked out with my Tiara in place, taking the arm of the boy I thought was the most handsome in school, ignoring his displeasure at being my escort, I stared out at the people in my school and was given a moment of joy. No one booed. I had expected that, after all every day I was on the outside. I kept the roses the principle bought each of the Valentines Court members for years, only shedding them when I no longer needed the reminder of my value, for I am worth more than roses and a popularity contest.

When I told my therapist about the feelings I had had, he told me I was becoming a narcissist. He berated me for every single feeling, and I went back on the meds. I was so certain he was right, and that my mother was too. The messages given to me during these visits to the psychologist were all so negative. Tomorrow I am calling and making appointments again. I am an adult now, perhaps, this will free me from some of the pain I feel. Perhaps I will find one who is willing to work with me on how to emotionally survive my physical pain. If I am offered medication my first visit, I will not return to that doctor.

I am still fighting for my humanity. I grew up meeting and failing expectations, never making my own. I am an adult now, and my own expectations are met. Yet when I cry, even at the end of a sad movie, I question, evaluate, and judge myself. My crying is the hardest, it is the most difficult for me to allow. I have come to embrace Happiness, anger, jealousy, but sorrow is the biggest terror. Even in the media we face the words of stigma. Pharmaceutical companies, doctors ignoring the validity of emotion, deranged fathers, and depressed mothers (Feel free to rearrange, relabel, or adjust these two for your own needs) all collude against humanity.

This is not the only way that people are dehumanized just one example of it. There is something in the air, something in the water, or perhaps just a tradition diluted with time that has caused dehumanization to become far too common. Civil Rights are torn away from people based on their supposed inhumanity, the disabled are not granted access because we surely aren’t human. I tried so very hard to shed my humanity, yet without it I cannot sing, I cannot write, and I cannot breathe.

I am afraid of psychologists. What if they refuse to not try and force me to take drugs? What if it turns out in the future I was wrong and needed the antidepressants? The consequences of these choices are the real fear. I fear too, that my next psychologist will refuse to see my pain as real. The wheelchair is not enough for some people, or it is too much. I will be writing a how to article on shopping for psychologists, after I am done, detailing my method. I will share it here.

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.

Isms, Hisms and Hersms

I read a few blogs on the internet circuit, some of them deal with feminism, some deal with racism, some deal with ableism, and others deal with Fatism. Isms of all shapes, sizes, colors, and one for each of us, sometimes two. Someone was having a sale on their isms when our culture was created, tossing them out like sprinkles on a cake. I am tired of isms today.

I have a great doctor. I will recommend her to just about anyone, for in her office there are no isms, just lists of things to get done. I now have an epipen, a referral for the dozens of undiagnosed whats its, and even a new diagnosis. I also was given the option of advocating for breast cancer awareness. The point was made that with my body being as it is, I have become acutely aware of risks and am in the perfect position to teach other disabled women about breast cancer.

I have thankfully never had breast cancer or even felt a strange lump but I do self exams weekly. I know it is recommended that you do monthly examinations, yet, this is not enough for me. I have relatives who have had cancer in all of their parts. Breast, brain, uterine, ovarian, liver, lung, you name it, and it has had cancer. I also have a lot of conditions, including one that effects my skin and therefore hypervigilance is necessary. Beyond this, what has made my doctor decide I am a great advocate? Self adaptation.

My breasts weigh a lot. Not only is the tissue very dense, making them pert and perky despite their size, but, it makes it harder to find lumps once you breach the FF quadrant. I left that a long time ago. I shared with her today my methods for a successful self examination. I have to adapt to the needs of my body and this means I may lay on my side, I may hang upside down, but, I always make certain to feel not just my breasts in a circular and consistent fashion, but my armpits and down my sides a bit.

I am lucky that I have had strong women in my life. I have an aunt who has had stage four Breast Cancer for longer than I have been alive. This woman has fought, and fought and thrives. She does at times worry her family for her life, but, she has dealt with cancer with no break for over twenty five years. In my mind she is the best teacher I can have about why cancer awareness is so important. Without knowing her, I might not have decided to live during one of the bouts with suicidal thoughts that I went through as a teenager. I might not have begun to battle with myself for proper medical care.

I have a lot of diagnosis, the list grows daily, but, my isms are mine. I am a short, fat, white girl in a wheelchair. I am also blessed with very rare breasts, the sort that women have painful surgery to mirror. I have great hair, great eyes (when they see) and a brain. I am facing daily challenges with ableism, fatism, and even some fetishism. Sexism is a consistent battle. I also face the blessings of people who are better than the isms. I face the knowledge given to me by my fellow females, and now I must learn to share.

Take stock of your isms, be you male or female. Take a look at what you are given by station in life, what you have fought for, and, if you have enough to share, reach out and help someone rise above. I will post about my chances to advocate for breast health. I am even going to start getting mammograms, a need I had hoped to put off for at least ten more years, but perhaps I can come up with a way to make them less painful.

This is hardly a new idea, I am merely following in the path of others who have taught me. This is not an area I had ever expected to be asked to advocate in, but, how can I deny the request when I know that even one person may become self aware?

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