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.

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.

The Burning Question about… Hygiene

Hygiene. Every human has it, some may not know what it is but bathing, daily needs. Each person has a right to be clean, healthy and happy. My journey to self acceptance included this tidbit. I deserve to feel beautiful. Right now I feel my after shower queasiness. I feel the stabbing pain, and have a nice new burn. My cold water lost pressure, I turned it off after the shooting pain of being burned hit, the shower head thrust against the wall. My hands grasped for the proper knob, the cold should be on all the way, the heat grows, I turn off the hot water, there is just a dribble of scalding liquid now, the cold is on all the way but no one is home. I feel the rage welling up in my chest. This is my shower for who knows how long. This is my time to get clean, to feel beautiful, to wash the layer of sweat and pus and blood off of me.

Then, I realize, a child could shower and have this happen and be injured severely. I get madder, and am definately going to talk to my landlord about this. I must advocate to find out why I was burned. Not only was I burned but the burn is under my stomach roll. That area is difficult to keep dry, the HS makes it harder too because I have an outbreak. The skin is fragile. I am temperature sensitive to an extreme as well. Why do I not question that this water is scalding? I must trust myself to advocate. I must also trust my body to tell me when the pain is worse than the pain of regular water. It helps that my skin is red and tender. In life second guessing yourself is defeating yourself before anyone has a chance to try.

I burst into tears as a result of the added pain. I was already at my limit, dizzy before I turned on the water. I have to bathe today, it’s been too long and my mind was suffering. Doctors always reprimand me if I am not clean enough. My mother used to as well. She would tell me if I could smell myself then I was dirty. I always smell myself. She shamed me for playing in the dirt, she shamed me out of the shame she herself faced. It does not excuse it, but without an understanding of what happens to the body and why things are the way they are, there is less understanding.

I bathe twice a week. So far, I have felt clean most of the time. I regret the lack of beautiful hair this can sometimes cause, but, that is the biggest concequence. Why do I bathe so little? Especially when I have a disease of the flesh that causes boils? Two reasons. One, passing out in the shower is extremely dangerous. I do not have the urge to kill myself. I have learned when my pain is too much and so far I have not been wrong about the fainting thing. If I might faint in the shower, I usually come near to passing out without getting wet. Water causes me pain. I do not drink it, because it makes me sick, and putting it on my skin feels like pouring flaming acid down my body. Redundant but very painful. The other reason is that when I started bathing less, I stopped having outbreaks daily. There are times when my skin is closer to clear.

Bathing strips your skin, at least it does mine. It hurts, and often I feel beautiful even if I have not scrubbed myself that day. My skin is healthier. I do not really see a downside, except when the pain prevents me from bathing when I have sores. Sponge baths fail me, though, I am working on new ways to be clean anyway. As an advocate at times I will force myself to endure the shower knowing that either that day or the next afternoon I have to be Ultra Presentable. This is the Super Cripple thing. Super Cripple is always well manicured, bathed, and has her hair coifed. Regular person with disabilities? Not so much.

I cannot bathe without assistance from my person and my care giver. He, since they are both male, helps me in and out of the shower. Sometimes he has to do the cleaning too. Usually this comes from my sleeping late and facing my daily paralysis routine. I wake up unable to move. Sometimes I cannot breathe enough. If I have to do the force bathing, this is when I must most of the time.

I was also taught that wearing underwear makes you a good person. This is a huge paraphrasing of events, and words. I hate underwear. Panties and bras do have a purpose, but I hate them. Lets start with Bras. They have never supported or fit right. I am not sure they come in my size, and when I hit the specialty store, the little old lady always tries to sell me something, but in a few days it shreds. When I wear a bra I always have four breasts, which means it doesn’t fit. I then wind up with giant raw spots and bigger boils and abscesses during out breaks, which never end. Bras have elastic. Have you ever known elastic to not contain latex? Me either.

I do like the look of my body with a bra, but the pain of my breasts pulling on my shoulders and back is enough without stacking them into a confined space, changing the weight distribution. Last time I did that I lost another vertebrae. My breasts have caused me to develope scoliosis, my doctors theorize too that my back would not have broken if I did not have such large breasts. By now you are wondering just how big they are. Me too. I need to remeasure. Last time I measured I was a 42 inches around my underbust, and at the thickest part of my non bra wearing self, I had 56 inches. They got bigger. I do not know if they make bras that fit.

I want a corset. If I won’t wear a bra I would hate a corset right? Hardly. I used to wear them for work. One of my jobs was reenacting as a demure civil war maiden. The corset was made for my body, and I always had extra energy after work. Sure I was a bit tired but I felt so good, and my back never hurt. Corsets also work as back braces, and some insurance companies cover them. Not mine, they don’t cover a regular back brace. I am appealing this, because I have a prescription for one.

On to underwear. They too have elastic, and my skin just peels off in sheets. Have you any idea what it is like to have your pubic region inflamed? Burning and falling to pieces? Blisters all the time, worse at times when the HS was responsible, but always a blistered burning, raw pain? When I wear panties I do.

My mother used to tell me that not wearing panties would make me into a slut. Sometimes word for word. She was trying to make me safe, because girls who do not wear panties are easily attacked right? Someone might see your girly bits too. I am not mocking her concerns, but, I still don’t wear unders. I used to get to school, pop into the bathroom and take them off. I was terrified I would become a slut growing up. In High School that all changed, when, I realized that the slutty pregnant girls wore underwear. My fear of the sluttiness faded. Most of my High School class wound up pregnant before Prom. They all wore underwear. They used to talk in class about what kind they had on. Underwear is not a slut preventative or a cause.

Some underwear is better than others. Just my Size has a really great french seam over the elastic, so, I can wear them in moderation. i save the panties for short skirts. I feel less inclined with pants, than ever. Some pants are bad for no underwear, so I just don’t own them. I stick with soft fabrics, and so far I have not had yeast infections, blisters, and the like from no panties.

Humans judge one another on their Hygiene, the requirements change annually. Now the requirement is a nice powdered face, tom marrow it might be silver eye make up. The point of these confessions? My hygiene is mine. My body is mine. I am a good person, and, no matter how much I clean I cannot scrub disability or humanity away. Neither can you.

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.

When Advocacy is like an Onion

Advocacy is like an onion. It has many layers, and each layer is not quite the same as the outside layer. Starting from the inside you have a core of people, the advocates for each organization that are well known on a National and International level. Each layer is a ring of less active people, less aware people.

Each layer going out has less moisture and vitality. When you cook an onion you usually peel off a few layers and discard them. This is where Advocacy is not like an onion. You cannot discard the outer layer. The outer layer consists of the people who have no information access. They are the people who advocates need to help the most. They are the most likely to be abused, they are the most likely to suffer, and they are the most likely to desire death out of neglect.

I have been in many layers of our Advocacy onion, and I know those layers very well. I work each day to try and help every layer I can access, and this includes looking for people in need. This sounds paranoid to some when I explain it to them but it is an essential part of advocacy. One example comes from a blog called Chewing the fat. You can read the entire story there, but the author was first abused by a stranger, and then took note that the stranger was a care giver. They then made a choice and reached out. The second part of that story is linked here, I won’t spoil the ending for you, you can read it on their site but know as you do, the victim in the story was the outermost layer of the onion. Now she has found herself on a new level.

The other way that advocacy is like an onion is it can make you cry. I myself am challenged with showing my emotions, even alone crying is a struggle. I have never cried so much in my life as when fighting for the rights of myself and others. Cutting into an onion triggers a chemical reaction, just as at times the tears are triggered by of all things endorphins. Sometimes I cry when advocacy goes so well that the joy in my heart overflows. It can be boundless. Other times my frustration and anger bring me to tears. Any emotion that can be felt can be magnified by the act of Advocacy.

Another way that advocacy is like an Onion is simply this. I hate onions. I really hate having to constantly advocate. I do not just dislike it, I hate the pain. Advocating hurts me, it burns up my stomach at times, it leaves me exposed to the sun, it cuts my soul open and lets even strangers poke at it with their sharp sticks of injustice. I am allergic to onions, they burn my flesh when I touch them, they split my skin, and my eyes like to swell shut after, blinding me.Sometimes people who ignore the truth, wasting my energy and causing pain blind me to the happy moments I can have.

The last way that I will share, but far from the last way that sets out truth, is this. Onions and advocacy can add spice. Isn’t variety the spice of life? My advocacy takes me on a strange and varied journey. I never know what each moment will bring, there is no predictability. This causes me to thrive. Onions add flavour to flavourless dishes, they change things, and they can make a good meal better, barring allergies.

For every layer of the world’s largest onion, there are more analogies. You likely have thought of some of your own while reading this.I cannot ever give up advocacy, for myself mostly, but for every single person that I have helped.

Do you like onions?

Firing your Doctor

I followed a link in a blog and it lead me to Alas, a Blog. I found there a well written essay on undiagnosed chronic pain. The focus is on women and is intersectional because it deals with discrimination and medicine. As any disabled person knows, doctors do not always listen. It is easier to get a diagnosis when they are fresh out of Med School, but that diagnosis can be wrong via wrote of inexperience. I have written two other How To posts, and this is the third. How do you fire a doctor?

Step 1. Determine why you do not feel you are recieving adequate care. At times this comes from a doctor being frustrated that you are not magically cured of your congenital issues, and then losing their effectiveness. Other times this comes from sitting in the ER for three days wishing you could just get some help, being told “No drinking or eating, the doctor might need to operate” and being told that they can see nothing wrong with you, without tests.

Lets start with the latter first.

Step 2. Become the Bad Patient, Angry Cripple, or Annoying but Empowered Patient who knows their body better than their doctor. Most people when seeking medical treatment have a vague idea of what is going on already. They know where it hurts, and yet it is not really their job to know why before they get to the doctor. Most people in the Emergency Room are often disoriented, queasy, and focused on a fast cure. That is the tenet of the ER. When you do not get your care you must ask, as calmly and politely as you can, “I want a second opinion, can I please see another doctor?”

Expect anger. No professional wants to be second guessed. None of them like it, but some will gladly send you to see someone else.

Step 3. When they decide to ignore it and try and send you home, you might need to call an advocate. If you are disabled it is easier to find advocates, but if you are able find someone who is coherent to help push for your needs. This step is best done before you are in the ER, but, sometimes you can find a patient who knows how to handle it and is willing to help you. This advocate will help you repeat your request for a second opinion over and over until you finally see another doctor.

Step 4. If you can, remember to breathe between each step, each sentence, to try and retain a claear head. It is horribly annoying but remember losing your temper will make it worse for you, and no one else.

Step 5. IF you are in an Emergency situation and are at risk of death, DO NOT GO HOME. You need to stay there, even if they want to send you home. You might need to sign in right off, after leaving. If you are uninsured this can raise your bills. This is horrible, but, if you are in danger of death money is not an object.

Returning to our first scenario, firing your Primary Care Physician:

Step 2. Write a letter to your doctor, you are not sending this letter but you are detailing out why you do not want them to see you any longer. If you are insured you might need to write a letter to your insurance explaining these very things. You will have to explain to your new doctor why you left your previous PCP (Primary Care Physician) or Specialist if they are in the same health care system. In many cities one stands above the rest for their level of care, my personal choice is to stay with in the system I know and trust may differ from yours.

Step 3. Try and find a list of approved doctors with in your insurance, if you have insurance. If not, then, this step still applies. Find a list of doctors. Depending on how you work you might want to contact your local medical review board for a list of physicians with complaints against them. In America this is legal, if you are not in the US, you can still find this information. Some of it is available on the internet. If you still trust your previous doctor, try asking for a recommendation.

Step 4. Write a list of your known medical complaints, when and where you were diagnosed, if you have any preexisting conditions, and write a list of expectations for your doctor. Remember to stay reasonable, you cannot expect your doctor to do anything that goes against their personal morals or professional morals.

Step 5. Make the appointment. If you do not feel safe, do not stay in the appointment. You have freedom, you can leave at anytime. IF this is the case, start at step three.

There are other times you might need to fire a doctor. Very rarely have I said to a doctor, “You are fired.” I have however, said it most in the ER. Remember, firing a doctor does not black list you from treatment. It does not preclude you from proper care, and it does sometimes make a difference.

Your pain is not in your head. You can find an answer, do not give up. Remember, there is no such thing as Hypochondria. You have the right to proper medical care. If you are uninsured most hospitals have payment programs, or will even waive the cost if you are unemployed or low income. No money is not an excuse for a lack of care. In the US (sorry I just do not know the other countries laws well enough) you are guaranteed medical care in an emergency, and can often obtain it outside of one.

Facebook Advocacy

I found out about the Facebook group fighting to force Facebook to enforce their own Terms of Service over at Chewing the Fat. If you read my Blog you know the main theme is advocating in every moment. There is always a choice in what you do. If you face book, please, join in.

Protect the people with cognitive and developmental disabilities such as Downs Syndrome who are being used for the entertainment of the ignorant and bigots. We need to fight for them. The link to the group is http://www.facebook.com/group.php?gid=63516216741 or you can click here for direct access to the page. I would not want to be victimized with my image being used in the manner that these groups are. The main focus of the group is to ban the word Retarded from Facebook.

Let’s make it so!

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