Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

Violence (Trigger Warning)

I keep rewriting this post. Violence is bad. We all know this. Violence is often celebrated in our culture. In the US most of the television shows, even for children, include some sort of violence or attempt to teach children what boys do and what girls do. Girls like fashion, pink, and hair. Boys like to fight, are great leaders, and work. Bull pucky. The media also rarely illustrates that women can be violent.

I am capable of killing. I am not capable of murder. I know that if I had to kill someone to defend myself or the ones I love, I could. I discovered this when I was young. I am very loyal, it is a part of my nature to protect people. This does come from my history with violent abuse. If I could take the pain then I could save my sister or brother. They used to do that as well. Each one of us did our best to be the only one in pain. I am capable of killing, but, I never have.

I have had run ins with so many things, my life sometimes reads like a fiction novel. I never used to think about writing nonfiction, so afraid of being told I had dreamed it all. My biological mother and I talked on the phone today, partially about violence. The violence of doctors.

When I was eight I began to see a psychologist. After the first meeting they handed my mother a prescription for Zoloft. The pills made me sleepy. I hated taking them, because I couldn’t think. My father was still around, and taking the pills at his house always meant more pain. My reflexes were already slow, how could I fight back? I mentioned this to my doctor and the threat came. “If you do not take your pills you will be locked up with the other worthless children.” This doctor was a man, I remember falling silent, wishing to tell my mother. He threatened too that if I told her that she would be sent away, abandoning the others. I took the pills.

This man is no longer a doctor, he tried this on a competent adult a few years ago. There was a scandal, it made the papers. This was just after I fired him. He was the first doctor I fired. I spent years after that taking more and more pills. At one time I was on six antidepressants, an anti psychotic, an anti epileptic medication that they thought would make me not depressed, birth control pills to try and force my body to have a period, and a few other things.

When I threw up, I had to take a second dose. Doctor’s orders. There are chunks of my life lost not just to suppressed memories but to my brain shutting down from the constant overdose. Most of the medications I was on were not approved for children, just adults over the age of eighteen. I reacted to most of them. Being allergic to so much, that is no surprise. Throwing up, bleeding with each dose, and hallucinations weren’t big enough side effects to be taken off of the drugs.

I was more violent during that time, as they tried to fix a chemical imbalance that did not exist, due to the drugs. They are not the only reason I lashed out at the world. Abuse does that, it teaches people to strike before they get hurt. I barely remember assaulting my best friend in High School. She touched my sandwich and teased me for it. I remember the anger and seeing her on the floor but not the act of hitting her in the head with a chunk of wood.

This was caught on film, there were witnesses. I went into a psychotic rage over food. I have some serious food issues, and I thought she was going to take my food. The fear of being deprived was so strong, that I had to protect myself. This was what I knew, I never knew people could share. I was a beast, primal in my reactions. She did not suffer permanent damage but was hospitalized for it. This lead to the only psychiatric hospitalization that benefited me. Hospital hiding the institution, feeding on itself and drugging children. Teaching them first hand who Nurse Ratchet was.

The reason being I finally needed help. I was shunted around the state, with my history and diagnoses no one wanted to treat me. It feels familiar at times with doctors, sending needles into my heart. I was misdiagnosed with mental health conditions. One to explain every disability. I was accused of things, such as self mutilation that came from my disabilities. I was lazy, I was stupid, I was just not good enough. Years of that, a decade in fact, of being told how worthless I was by doctors and I did not trust them.

I was sent to an experimental facility. The Ranch, as my family calls it, was a peer support program. We did see therapists, and we did have medication given to us but we lived in a boarding school environment. The program depended on it’s recipients to function. This made a difference, as I found people my age I could talk to. This was a first. I also learned I was not alone. At the other facilities you were shoved in until you behaved for three days or so, then went home. In and out like a yo yo.

Each of the children at the Ranch had been in and out as well. Most were not from New Mexico, but a few of us were granted access to keep diversity up. There was violence there, though there was also nature. The Ranch is the only place I have ever been able to drink the water. The water came straight out of the ground. The first thing the doctors did was take me off all of my meds. They gave me two months before they started me on another. They came so close to freeing me from my shackles of medication. The medicine they put me on did change things, it seemed to reverse some of the damage to my brain from the drugs that came before. I stopped losing my hair, I gained some weight and lost some girth. I even began to smile sometimes.

I also met horses. I was one with nature there. There was silence at times, and there was bonding. That was where I learned I could love. The fact is, my father was a diagnosed psychopath. Even knowing this these “great” doctors did not seem to consider that my behavior was environmental. The ranch is where I learned about PTSD. It is also where I learned that flashbacks were not just my burden.

One of the other dorms, full of boys, found a dog. I was triggered when the dog came to us bleeding. The flashback lasted for six hours. I relieved my father killing people’s pets because I liked them. I still cannot go into detail on those horrors without triggering myself. This poor dog was hungry, lost in the middle of no where, and then was assaulted. When he came to our dorm, my brain left. I woke up, and found that the world had for once stopped for me.

This was my turning point. It wasn’t being threatened with institutionalization in the adult hospital, it wasn’t the new drug. It was coming back to myself and finding that every girl had stopped what they were doing, had sat in a circle around me and the dog to which I was clinging and waited. When I stopped screaming, apparently I had been, my roommate asked what happened. When I told them, no one told me I lied, no one told me it was my fault. The first time in my life, someone hugged me and cried with me. No one punished me for needing help, a first in my life.

I was on the cusp of adulthood when this finally happened. I was about to reach a point of no return, trapped in the system. They saved me from my violence, and I saved them in turn. I love each of those girls still. Someday I may cross their paths again, though I do not plan to admit it to them if I do. We each deserve the right to deny our childhoods to an extent.

I spent my childhood dying daily. I am certain that not every therapist was bad, I do not remember them if they were not. I only remember the incidents of threat, of lies, and of burden. Child psychologists often can get away with crimes and breaking the rules of conduct that their profession has. Not all of them do, but, an adult has power over a child. A psychologist is alone for at least an hour with a child, and some of them abuse this power. I had one who found out I would turn on her like a dog hit one too many times. She spent the sessions telling me about her husband’s erectile dysfunction, and telling me I was fat. The male doctor who gave me the pills threatened me each time with different torments. One of the other psychologists took part in encouraging the children at my school to burn me at the stake.

It is no wonder that I hated the world. Until the ranch only a few teachers had ever shown me adults could manage to not hurt me. Each of them saved a part of my soul, saved a fragment of hope from the violence. My mother did try, but, it seemed hopeless that any of her children would turn out to be a healthy adult. How could we? She wasn’t. We only knew violence.

Perhaps the violence I know tempered me? I doubt it. I believe it was the small bits of love I could find. I do not believe the Ranch did all the work in saving me, I think instead they unburied the ground work set by another.

After Toastmasters I will write of my first Sensei, I will tell you of my time as Little Lotus and how the Batman was my father until I was six. It sounds silly, and the fantasy was. It still held violence but my Sensei taught me ways to thrive, not just survive. I will also write about my experience with hate and nearly being burned as a witch.

We, the subjects of oppression are forbidden anger, we are forbidden violence. Even when it is used against us, violence is often attributed to us. Those with mental health issues, mental disabilities, and physical disabilities are vulnerable to violence in unique ways. When defending ourselves we are demonized. Women who show anger are told to simmer down, they are told that their anger is inappropriate. Some are raped to control their power, to try and punish them for anger. Persons of Color of any gender are also forbidden anger. The stereotypes tell how violent they are, and yet when a man is shot down for his skin color and people get angry, the murdering cops get away with it because the people get angry.

Violence is all around us, it is on the TV, it is in books, it is in my beloved comic books. Violence is in our history. It is sadly in our future. I mourn for all the children and those who once were children who know violence. The kiss of violence is the scar of fear, the spectre of disillusionment, and the taste of bitterness that shatters dreams.

Violence is the most horrifying entity that has ever been introduced into society. Violence is not a part of human nature, it was taught. We learned it from somewhere. Violence is not never ending. The cycle can be broken. I have broken the cycle in my family. Even when attacked I try to protect myself without violence. How do you survive violence? How do you endure?

Anger is violent. Violence is a poison. My antidote for violence is to sing, to write, or to create something. To be violent is to become what you fear. Fear can turn to anger, anger turns into violence. The cycle swirls around. I created this post not just to educate, but to share. I want to share my peace. In order to do that, you must see my pain too. I fear these words most of all, therefore I offer them up to transform and fly into the universe like butterflies, unlocking the caged minds of others. I write these words not with anger, but with sorrow for who I was, mourning for the death of innocence as I knew it, and with love. The love is not just for myself, though I truly love myself. It is Wishing Love, I wish love upon each and every person in this world.

I wish love upon you, for whoever you are you do deserve love. I may know you, I may not. I embrace you with my soul. I offer you a haven of knowledge, a haven of peace, and a haven of change. I am a butterfly. Here you too may learn to fly.

How Rare is Rare?

When every medical diagnosis I have is considered rare, I want to know how rare is rare? Ehlers-Danlos Syndrome, Raynaud’s Syndrome, Celiac Sprue… the entire list is much longer than that and as of yesterday has a new contender. I found myself laughing when my doctor said, “Well, It is rare… but there is a name for the skin condition you have.”

I wasn’t even aware I had a skin condition. I always thought I was just dirtier than the other girls, and that my skin just sucked. I used to shower up to six times a day, though that made little to no difference in the quality of skin. I have lesions, blisters, boils and abscesses constantly. I thought this was normal, and that everyone got them at least sometimes. The name of this condition? Hidradenitis Supprativa. This condition is considered an actual disability according to the government.

I know why personally. For one, there are days when I can barely move my arms and walking, beyond the agony of the broken bones and hip issues I already have can be made worse by the damaged skin in my groin. Psychologically some of my most depressive days are the result of being infected, sweaty, and often worrying over spreading infection to others. Now that I know the name of the disease and have some knowledge I am aware that I am not going to infect anyone with it. It is rare. It is genetic.

I want to know what the mortality rate is with this disease. Some might say zero but I remember just wanting to die when I had my first really bad abscess. I was at work, and my nice shirt was ruined by the pus and blood because the boil burst before my break. I hid more shame, and beyond wanting to hide, run, or just cut my breasts off I considered killing myself. The never ending work of trying to get everything done, trying to be clean enough? That day I could not fathom selling anything, hefting the heavy boxes of dishes, and what about the smell?

Infection is not a clean smell. Neither is sweat. Being a teenager I never felt pretty. It took me becoming an adult to start seeing past the little things. Still, attending a friend’s wedding my thoughts were how to make certain my formal wear would not retain the odor of my sweat, on how to make sure that no one could tell. I am now entering the mourning stage of a new diagnosis. I mourn the times when I cut out my own abscesses. I did that last week. I have never once considered seeing a doctor when my breasts split open. It happens so often, that it is normal to me to self care.

This brings me to another point where I was accused of Self Mutilation as a teenager. Beyond having actual issues with that due to the severity of my depression, there were times when I was told I had to have cut myself in order for my body to be so gory. I was sent to a therapist for it. My body has scars, open wounds that have been around longer than some of my siblings, and my mind has been shaped by this disease.

The other effect of more rare diseases that are incurable is this. Can I escape being disabled? How inevitable is it for some of us to wind up with our bodies breaking us down? My body is out to get me. How can I function like this? What is next? Is breathing going to become a forbidden act because of something rare and genetic?

How can something like this really be rare too? Some of the research I did today indicates it is related to acne, though it is not acne. What if it is not as rare as all that? What if more people have it, undiagnosed and are losing out on their quality of life?

At this time there is no treatment. I will be updating my disabilities page, and I will find ways to help others like me. The more people who know, the more the odds of a treatment being created increase. I currently treat the breast area with a steroid cream, though, this is dangerous to do for your genitalia, and therefore half of my effected area is untreatable.

There is nothing that relieves the pressure, beyond bursting the abscesses. There is nothing that relieves the burning sensation, and there is nothing I can use to cut down on the sweat. Sometimes saline solution helps to dry me out, but, there is nothing that has a permanent or even reliable effect. Antibiotics have helped some, during the worst part of the cycle, yet not for me.

I am tired of being rare. I am tired of waking up in the middle of the night and squeezing puss out of my breasts. I am tired of denying myself sex, when I truly want it, because I fear being disgusting or the pain is too great. Sex is important to most people, me included, but my body is attacking itself and eventually my genetalia may be scarred so deeply that I can no longer function sexually.

In a long term relationship, this has an effect. It is not positive. As a woman, I have had a lot of challenges facing my femininity, partly because of this disease, but this adds another facet. If I cannot pleasure my partner, and vice versa, what are the long term side effects psychologically?

I am rare. I am one of the rarest people you will ever meet. My pain is rare. My skin is rare. My eyes and hair, and my entire body is a rare example of surviving despite it all. So is yours. So is the man on the street corner in the business suit. So is the single mother. Rare is not rare at all. For every diagnosis of a rare condition, countless others are never discovered. Statistics are faulty, when not every case is discovered, so how can we truly understand rare?

Info Links on Hidradenitis Supprativa:

http://www.hs-foundation.org

http://www.hs-usa.org

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