Aftermath (Trigger Warning)

After I wrote the post last night I cried for an hour, I tried to talk with my Person and wound up just asking him to read the post. He understood a bit before, but after he read my words he could not argue with my need to have him seek out the words. I was so drained that I could barely keep my eyes open. I was almost asleep when I shifted and felt something under me. I shifted to try and get off of it, I thought it was a pen, as I often lose them in my blankets and do my work from my bed when I have to.

I couldn’t find the pen. Moving around had woken me up enough to help me realise I had to pee, if I hadn’t then I would’ve been awake in two hours and more off balance. So, I went to the bathroom. My body had a somatic reaction to the memories combined with an existing abcess due to the Hidradenitis Supprativa. To explain, I must add to the details of last night. Part of what I left out was the mention of genital mutilation. My father used my vagina as an ash tray. I have scars from both the HS and his gridning out lighted cigarettes in my flesh. I don’t know if I screamed but if not it was only because I couldn’t physically.

The pen I felt was an abscess that ran the length of my canal and was as wide as one half of my vagina. The size means it was there for a while, but the stress or perhaps the freedom triggered it coming to a head. It hurt. I called my person and asked for medical supplies, then I started trying to figure out what it was. It felt like dough with a liquid center. I ran my fingers up the length of it and at the head the abscess filled my hand. It didn’t burst the first time, but there was blood on the gauze. I did it again, and the mass got bigger. This time it burst.

It took a long while to get it fully drained, but, after the initial pain I felt only relief. Yes, that was a serious infection, and yes I have notified my doctor and we discussed treatment. The treatment is for me to keep it clean. If it fills up again and I can’t keep it drained I will go on antibiotics. We are waiting because of my allergies to all antibiotics, each has a reaction so it has to be worth it for me to take the pills.

While draining this wound I was forced to deal with my femininity directly after reliving the trauma. I never want to be female after, because in my mind it would’ve been somehow better if I was a boy. That justification didn’t hit me, nor did the self hate. I felt sorrow but not hate. I had to love myself to tend my wound. The world didn’t end and I continued to function. We did lock William out of the room due to my flashbacks. He would be in danger. Sprite is able to help me with my PTSD and set right to work once the medical gore was taken care of. She watched from the floor while I cleaned and waited for my Person to shut the door. Even now, she is at my side, resting with me.

There was a dream but it was not a nightmare. I was simply a butterfly fluttering in fields of flowers, the wind playing a song in the trees. Everything was peaceful. I flew up into the sky and there I became the wind and began to sing. Once I blew through the trees I became the tree and I grew. I am an oak and solid, I will be here for generations, I will outlast the injuries and pain. I am rare, I am strong. I then was the acorn, falling to the earth. I turned into a flower seed and fed the butterfly, before I was flying up again, on brightly colored wings. I have some tears that are falling as I share my dream. They are tears of joy. They feel different than the tears I shed in sorrow.

They are soft, and light. They are cleansing. I am looking at my wall, where I have a mural made out of butterfly stickers. They fly up, and up, swirling around a Jonathon Earl Bowser card I was given, around one another. I should finish the mural. I can hang the moon, and they can fly higher. I still feel safe. I feel free. There is more life inside of me than before. The infection is purged. I can keep growing.

I am not afraid to look at myself in the mirror. My person cannot see the scars in my flesh, he only sees the woman that I have become. The child who died that night can finally be laid to her rest. She can finally have her peace. I can finally be whole.

I am not sure when this all happened. Any survivor or victim or victim survivor knows this is a process. I have done this mostly alone, which may have made it harder. The alone was not wise. The alone made it harder. The alone felt safer. I no longer have to be alone. I have so many wonderful things in my life, wonderful people, and it is time to grow.

I have knowledge that is new too. I became a dancer because of that night. I couldn’t bear the stillness. Being injured and paralysed trapped me in fear. I denied the truth, I denied just how afraid I had been of being injured once more. When it happened and I lost everything, I secretly thought he had won. When I saw him after, my terror was not just of him hurting me but of him seeing he had won. He only saw that he had lost. I miss the dancing, but, knowing that I chose that path to spite him I can let it go. Perhaps I will teach someone else to dance, perhaps I will choreograph a dance with women who have survived or who have been victims. To celebrate what we are. It is time to grow.

Sink your roots deep, raise your branches to the sky.

Beauty

I am tired of the stereotype of beauty. I grew up being told that a girl should like men who look like Brad Pitt. I like women with soft lush curves, big and strong ones too. Many would consider my past conquests masculine, or overly thin, or fat. No one type fits what I like. I too have “strange” preferences for the men I have dated and these too tend towards those with meat on their bones, they have body hair, they are dark skinned, fair skinned, or really just alive.

Most of them, but not all, are tall. With either sex I tend to reach out for the taller people, though tall has changed in meaning since the wheelchair entered my life. I can’t look up at my baby brother without hurting my neck. He sits down for me, and still towers above. He is about seven feet tall. I love height because my family is full of tall people, except my own biological father. I associate height with safety. What does this mean about the other standards of beauty? Are we all programmed to like certain things?

Yes!

A huge part of my persecution in this life has been based on facets of my physical appearance. I have red hair, very pale skin that burns the instant sun touches it, soft full lips, and I have always had curves. My smallest size is a fourteen. I was barely eating to maintain that. My body needs meat on it. I am simply a curvaceous woman. I do have an ample bosom as well, and all of these things have been picked at.

I grew up being told I should be blonde. Blonde meant perfection. I hardly find blondes attractive as a result. I am aware that most of my siblings and my own mother are all blonde, and this factors in too. I think Blue Eyes are the best, though any shade is lovely to me. Blue eyes were mocked, because they are pale. Being a minority as a white person is very rare in any part of the world, the patriarchal structure still dominates and is usually white, even in countries where white is the minority. I have always been told my pale skin makes me wealthy. Whiteness in my state is a status symbol.

In India women who are by nature in the darker end of the spectrum are considered harder to marry off, they have less value based on something as simple as their genetic make up. The lighter you are, the more respect you can gain. This is White Privilege. It has defaced an entire culture, this love of all things white has poisoned us. You see whiteness in media, dominantly with able bodied super muscular WHITE men. You see their blonde perfection everywhere. I think back to the Nazi Propaganda studies group I was a member of in High School, and that is what I see. Reflections of past propaganda, continued, accepted, and fully realized.

Curly hair is considered disheveled. Girls with curly hair wake up at odd hours to iron their hair out. I think it is lovely, and my standard of beauty includes the use of a curling iron to add curls to my hair. This is rare, the era of the Super Perm died out at the end of the Eighties, except for a few hold outs.

I am told I must wear make up to seem presentable. I do, at times like to wear make up but I do it when it feels good. Usually I will also hide some of my facial scars under make up, if I cannot shake my feelings of Paranoia. I do not allow myself to wear make up on days when my self worth is being questioned, or when my confidence would hinge only on sultry red lips.

As I write this I am watching a movie that has what I consider the equivalent of Black Face. Sophia Loren is the Millionairess, Peter Sellers is the Indian Doctor who teaches her how to be more than a spoiled snob. This movie is full of propaganda that is anti woman, anti persons of color. I was enjoying it until I realized the fallacy that a white man is playing an Indian, with hardly any alteration of skin color and a very cliched accent.

I also note that the famed figure of Sophia Lauren seems to be aided via a corset. I might be wrong, but the extremes to her figure seem to need assistance. It doesn’t feel natural to me, though it does fit the “standard of beauty”. Her hair is lightened a bit, and of course she is always shown in posh and polished appeal during this film.

I do not think Brad Pitt is handsome. I think he is mediocre. This is all about looks, not his acting. I will not malign someone for having a career. I will however state that I do not understand the requirement to find him attractive. If you want to know who I find attractive in Hollywood, you will have to dig deep. There are few people that strike me as gorgeous or stunning, especially since we have entered the Anorexia Age of Hollyweird. Health is beautiful. That inner glow of self acceptance can make anyone gorgeous.

Since my blossoming into awareness about privilege I have seen more beauty in the world. This side effect shocked me. I like to compliment people when I find them attractive, and I have had the urge to tell the entire world how beautiful it is. The beauty I see is nothing like what is in the Movies or on Television. I live in a world of diversity. The people I see daily are of mixed race, from other countries, and their voices alone are a rhythmic song.

I am not beautiful by the overly BMI oriented modern sensibilities. I never will be. I’d have to break my bones, cut my body apart, inject myself with dye, and lose my sense of self. (This statement does not mean that those who naturally fit this standard are not beautiful, it is merely a rejection of the expectation to alter myself to be just like them) I reject the need to starve myself to fit a rare body type. I reject the fashion industry’s expectation that “fat” women do not like Fashion. I LOVE clothes shopping, and am discovering that I could easily spend a million dollars on cute shoes. These are cliches about womanhood, and yet you will find I only have four pairs of shoes, two for winter, two for summer. My clothing is all rather sensible, black, and boring.

I am pigeon holed by my lack of thinness. I am trapped by the need for others to stigmatize those who are not identical to them. I am not a Stepford Cripple, I am not anything but a person. I am flesh, I am bone, and I have soul. You are beautiful. My friend who is an immigrant is beautiful. I love listening to her voice, the way that she sings while she speaks entrances me. My friend who is the son of immigrants is beautiful. He cannot see that because his world is full of hatred, hatred of the Other.

I discuss privilege with my friends. It is an unavoidable conversation now. Eventually it is addressed either by discussion of politics, feminism, or simply the venting of frustration. I no longer hide my beliefs, to survive until the next day. I am free to speak them. Most of the time these conversations hold a similar impact, someone learns something. We all do really. My friends are all shapes and sizes. I have friends who are thin, blonde, and blue eyed. I have friends who are extraordinarily fat, but give hugs that are so soft. I have friends of every shape, size, mental capacity, and ability. My friends are all beautiful. You are beautiful.

Stop stigmatizing people for not being clones. Clones are scary, according to the media pundits and science fiction. Every time the word cloning is mentioned on TV it is with the hush of fear. Disability also has that hush of fear. Stop being afraid. Fear stops you from living life. This doesn’t mean you should ignore some fears, such as the fear of hunger or the fear of a snake bite. Stop fearing things that are different. If you do not understand something, educate yourself. Don’t fear it. Don’t shun it.

This includes fine art, not so fine art, but most especially people. Children are people. Women are people. I see often abuse launched at those who are different. I experience it every time I go out. I was reminded however, of the power of kindness and decorum.

I write often about the importance of gentle resistance, passive resistance, and not striking back. I admit I fail this way at times but, every so often I am given the reminder I need, the proof that I am right. I had transferred out of my chair at Sam’s Club, into the van and rolled down the window. Beside me a harried mother of two beautiful children, her disabled mother, and a cart of groceries struggled. I watched in silence, until they were about to leave, calling out to the woman that her mother had forgotten her cane.

Her son looked up as she thanked me, glad to not have to spend another twenty five dollars on a cane, and said, “Mommy, that’s the lady from the Walmart with the kitty!” His mother paused and said, “She was on TV too.” We talked then, and I complimented her for handling the stress. I could see she was frazzled, and I let her kids talk to Sprite while she settled them in. No petting of course, but, I told her how beautiful her family is. Three words. “You have a beautiful family.” Okay, five. I never was good with numbers.

She froze, looked at her kids, and then smiled. “I wish everyone could see that.” The thing I have not mentioned is this. Her children are Triracial. They are of Asian, African, and Caucasian Descent. I wanted to take them home with me, their sweetness gave me a rare pang of desire for Motherhood. It went away before we were out of the parking lot, but not the reminder that everything you do has a lasting impression. Every word, Every laugh, Every shout, every time you teach someone something. There is impact.

What draws me to people is never what they look like. It is instead their personality, the joy they have for life, and sometimes the hope that I can grow up to be like them. I may never grow up. I am always surprised when I realize for a moment I am not a child anymore. It fades, but, that too reminds me to be innocent.

Beauty is not in the eye of the beholder. It is not what media tells us it should be. Beauty is merely in the existence of life. Flowers, Puppies, kittens, children, lovers. All beautiful. Be you a Homosexual, Transgendered, A person of non Caucasian ethnicity, red haired, blonde haired, black haired, green haired, or even a strange shade of orange. You are beautiful.

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

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None