Model Behavior and Me (Trigger warning)

I was once a model. It was super right? Right? Nope. It was horrible. I was deemed a plus sized model yet as I look at a photograph taken at that same time I see that I,  having dyed my hair to be LESS red for this opportunity, was stunning. I actually still am of course in a more mature way. Sometimes I have to remind myself that I have done the modeling, and really existed in that body. Before I knew my body was a betrayer.

Kat Fury, with her hair at her shoulders, a rich chestnut color, square glasses, blue eyes, and reflective make up. The photo was taken on a cellphoneThis was before the giant mole by my nose was removed and turned out to not be a mole. This was before I had learned food was my friend. This was long ago. I look at this picture though and I see more pain emotionally than I face now. Yes I am in pain as I write this but it is purely physical, the emotional pain is sort of numbed tonight. In that picture my jaw is dislocated so that I could escape my double chin. In my post about jaw dislocations Amanda made some comments about her own jaw issues and I realized, I have been unhinging my jaw for years. I didn’t even register it. I  just DO it.

When I was a model, work was horrible. Not only was I exhausted but I was shamed if I ate before work. I couldn’t lie either, they ask and I would say yes. The other models told me at times how AWFUL I was because I had no issue with a donut. I wasn’t aware of my allergies yet, in fact I would eat what I wanted which usually turned out to be meat anyway. I was always hungry however, and started to give in to the shaming, starving my body more and more. I’ll just eat less of this, I’ll just miss this one meal. This was dangerous territory.

It seems odd to be that people DREAM of having this job. The clothing, if it does not fit is forced to, even if it hurts. You are always warped out of shape. My breasts were almost always shopped to look less like real breasts. The shape of a real breast is forbidden in modelling. I also was told more than once at a call in that it was a shame my bosom was real and that it was the fault of my breasts that my belly was not perfectly flat. No one’s is before photoshop, a six pack is not flat unless you paint it on after all.

I was told too that my red hair was just wrong for me. I prefer it. Even in pictures where I am not looking my best I prefer that hair to dyed. Right now I am mourning it. I realize it may be three years or more before all traces of this black dye are gone.

Here is a bit of a time stream, and yes one of these pictures has a lot of cleavage. You can also watch my jaw line and you can see when I am and am not dislocating my jaw. (For those of you wondering, the headband is my fangirlism for Naruto).

Kat Fury at the age of 21. her hair is red, long and was nearly to her waist. Her shirt is pulled up really high to cover her chest.

Kat fury at the ate of 21 wearing a leaf village headband. The shirt button has popped and her very ample chest is not hidden at all. Her long red hair is nearly to her waist

Right here you can see the jaw issue, It’s exhausting to hold it in a specific place and it slipped back some on the bottom.

Kat Fury and Sprite at her wedding in December 2008. Kat's hair is a little dirty and is darker. it's only shoulder length.

In all of the above pictures my hair is red. It changes how I feel. I feel good in all of those pictures. I do not feel good in others where my hair was stripped of color. The red hair for me is a flag of identity. I am a redhead, I am gorgeous, I have glowing skin. It doesn’t glow with darker hair nearly as much. I should mention this is my favorite wedding picture and it’s candid. The photographer was supposed to be taking pictures of my niece (she of course did but she snapped this too).

I find it interesting in some ways that when modelling I was told my skin wasn’t clear enough, wasn’t good enough. My skin is actually WORSE now but it looks fine to me. I  have a surgical scar that is rarely visible but there splitting my face in half. It’s like Two Face but without the cliche and inaccurate portrayal of mental health disorders. The wedding photograph is actually of the side where the surgery was done and my face was peeled off due to a tumor. I felt so gorgeous. Sprite was a bit cranky but she always is when I am upright too long.

I was a sex symbol even if in a small way. Modelling by default means you must be sexy and gorgeous unless the ad campaign focuses on the ugly or weird. I never did any of those, though that was what I applied for. I was deemed too pretty to be ugly and weird. I remember feeling so out of place because this notion contrasted with my previous experience of being deemed too ugly and weird for society, love, food, or any semblance of an education. It shook me to my core, and I began to wonder, what if being a model meant I was about to be raped again. I was so afraid during that time.

I do not have any pictures of me modelling now, they were lost via illness, homelessness, and abuse. In some of the pictures I wore a bathing suit, and frolicked with other girls. I remember asking a model about being the only asian around and she commented that was how she got work. Being the only one around. She had to be the palest, the prettiest and the most non Asian looking in the group. I noticed too in every ad we were in even I was photoshopped to be whiter. I expected thinner but, I am so very white. There are times when I had to have reshoots done because my skin reflected the light too much. Most of my home photos have elements of this. My own photosensitivity likely plays a part.

I remember some of the lies about food we were told, I remember girls crying. I remember always feeling in a daze from pain and working extra hard to not be lazy because pain was laziness. I remember when I was caught eating a hamburger walking in to a shoot and the photographer screamed, “We can see the burger in your stomach.” I remember too, a sense of relief when I didn’t have to model anymore. When I was done with it.

I didn’t model for long, about a year. I did model clothing for free first, and then there were ads for more clothing. I was always reminded that in every photo I must be an object, I must not be a person. A model is a hanger for the clothing and must do nothing to distract from it. Another reason my hair was de-redded was this claim. Red hair makes it harder to match clothing. Since I dislike pink, and never actually had to wear colors that would’ve clashed with my hair this seems bogus to me.

I am left to wonder, was I ever so much the ugly duckling? I have as I have aged eschewed more and more of society and it’s lies and pain. I seek outsider groups. I seek outsiders. I seek my people. I no longer feel the urge for fame just fortune, and really fortune for me is more having enough to eat, and not having to be afraid of losing my tiny income should a glitch happen in a computer. I hold my breath at times and pray.

Modeling did help me to realize that any rape I endured at the hands of the four “men” who did rape me was not because of looks, and that rape is not about sex. In fact when I was raped each time I was never near my finest appearance. I was a minor child, I was the fat kid who was in so much pain and so angry she was cutting her body apart, and I was a prisoner in my home being starved in the hopes that I would start looking like a minor child. None of this had to do with appearance. It had to do with my being vulnerable, it had to do with my being “out of control”, it had to do with my bisexuality, it had to do with my not conforming to the actions a “wife should” and instead seeking things that satisfied me, effected society and would open doors for other people with disabilities.

Modeling challenged my supposed bulimia. I am still not positive this was a misdiagnosis or was a correct one as a child. I think it was both. I do know that I have not lost a battle with it except during attacks of PTSD since I was 17.  The urge to purge is almost non existant and when it comes, it is again with PTSD. Even then I can usually stop myself from obeying the ghosts of fathers and failures past.

Modeling is not something I would ever expose a minor child to. I think with the societal body dysmorphia that is considered normal we need to be hyperactive about who models, and we need to protect our children from the dangers of photoshop and unrealistic beauty. I rememebr not even recognizing myself in a few ads. Most of them I couldn’t quite spot the Kat.

Modeling helped me find who I am, in the worst possible ways. I denied for years that I was beautiful during that time. I was not the token fat chick in so much as I was not fat. I was actually amid the thinner girls there. I was deemed a plus size model because I thought I was fat. I denied my own wants for my body. In the next few years I will obtain contacts, I will reclaim the red to my hair even if the follicles no longer add it, and I will do a sexy photoshoot for me. No photoshopping, just my body as it is. I don’t plan to shave my legs for this photoshoot either. I will model my inside with my outside.

Now you have it, my dirty little secret. I took part in mass media!

UPDATE: Forgot something, yes I got paler over time. The pictures in the middle have me with what passes for a “tan” in the summer. I haven’t let myself get that much sun in years. The only pictures with make up beyond lipstick are the wedding photo and the first model age photo.

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.

Gift Box

I changed my name a few years ago, a court gag order protecting me from my father. For several years before this I used the name Kateryna Fury on anything not legal. I don’t answer to the old name, and flinch when someone uses it, even to call another. The name is perfectly reasonable, a good Jewish name. I am not Jewish, but my father might have been. As with many things he told us, there is no evidence, no proof and usually proof to the contrary.

I found my name in the grocery store. I am not joking, it was a gift. The gift box came wrapped in the form of a wizened old woman. She looked like something out of a science fiction book, the wise old leader, the person put in place to lead the hero. She had a soft voice, not craggy but gentle and looked at me her voice too held an accent. I believe she was born in India. “You are Kateryna (middle name) Fury.” I was quietly confused. She then walked back behind the tuna fish can display. I had no idea who she was, and when I tried to catch up, got way laid by a crowd of people deciding to railroad and push around the young woman with a walker, after all, pushing her is a convenience her humanity is not a necessity to them.

I entered research mode, looking up each facet of my name. I had gone my variations on Kat for years, I knew that was part of my name. One of my ex boyfriends, before he landed himself in jail for trying to rape me, kill me and steal my soul, had declared too that I was a Kat. There was something pleasing about this, as I never really wanted to be human as a child. I wanted to be one of my cat’s kittens.

I spent most of my childhood refusing my given name as well. Usually this was strongest during the times of parental betrayal. It took me years to find the granny gift box. She merely identified what I was hunting for. My SCA name is Kata Hrafnsdottir, another name with another meaning that speaks to me. Kata is related to Kateryna grammatically though is older and is Old Norse, the text of course translated for the English Speaker’s benefit. In the philological history of the words, there is a root and universal definition. Hrafn is raven, a reference to one of my dieties, and dottir means simply, daughter. I kept the definition that was most dear, it is my universal theme and it is a part of me.

Many people protest the idea of a name change. My legal excuse was safety, but a part of my identity was wrapped up in the quest for the name I could answer to. Many people claim a name does not matter, yet, if you name your boy child Sue, such as in the Johnny Cash song, he might be teased. Some names are cruel. My nephew Red is going to loathe the color red. People decided upon his birth he would like this color. He is overloaded with bright red toys, clothes, and already likes to go by something else. His middle name is Storm, but, no one thinks to buy him any Xmen toys. He has decided to be Bob this week.

So, here is what I found when I opened the gift box of my name.

Kateryna- Pure. Kateryna is Ukrainian and Russian in origin. It fits a part of my heritage that may not really exist, but the sentiment is beautiful. I am pure. No one had called me that before. This is a name without shame

The middle names, I have multiple, mean individually, Halo or Golden Light, Warrior, The next means Strife, the last means Royalty. One of them comes from my great grandmother, an honor to hold that name. She died when I was small of Alzheimer’s. She was beautiful in her time however, and smart. I am honored to have her name, and it is all that remains of my original.

The last name is a reference to the Erinyes or Dirae, the angry ones. I chose to accept this title for I often see myself as avenging in my actions. I avenge the murdered child in my own heart by living well and fighting for my rights.

Pure golden warrior of royalty and anger. That is what my name means.  The anger aspect does not mean I am full of rage, yelling, or bitter. It is merely an honest reflection of my life. Much of it has been angry, and anger is often seen as power. It was all the power in the world I once knew, and I honour that part of my life too.

Names have meaning, and I treasure mine. The old name was given to someone else, she was named for me and that stands. I will never dishonour that by malinging the name meaning. I am not bound by god however. I am bound by myself to live not just well but with conscious acts of greatness.

Just Die Already

Tonight while shopping for clothing at the Thrift Store I had two experiences, one uplifting the other utterly depressing. Lets start with the depressing one, that way we can end our time together on a happy note. I was told to just die.

I was struggling to check the size of this really sexy green dress, alas it was too small or I would own said sexy green dress. I asked for help from the employee nearest me and while she was great, the hispanic man sitting on a couch chewing his cud looked up and said, “You can’t do it yourself? Just give up and die.” He said this without blinking and just resumed staring off into space. The poor employee fled, she wasn’t sure how to handle this and likely could tell I was about to go KABOOM. Few things make me want to yell, but being devalued as a person who should just die? I had to ask why.

“Why would you say that?”
“Life ain’t worth living if you can’t walk. You have to be sad, so just give in and die.”
I ranted, in the store, and half expected my significant other to come and ask why I was so pissed. I did not yell, or he would have. I haven’t told him yet either. I want to make sure the man is gone so he doesn’t get beaten down by my man.

How do you respond when someone devalues you to the point of declaring that you should be dead? I get angry. I told him this. My legs may fail, but, I have the energy to shop, sing, and actually contribute to society because of my wheelchair. I am happy, I have great sex, and every reason to live that he does, maybe more. I managed to not cuss, trying to remind myself I have to set an example.

I also asked this man if he had forgotten about Hitler or just wanted to sound like his best friend. I am not stupid, I am not weak. I am full of fire and the spice of life. I am a person. I have every right to live, just as the young man who followed me around that store with Downs Syndrome does. I asked the man too, why he was sitting on the couch wasting aisle space, since I might need to roll past him eventually. “My feet are tired.” That was when I smiled coldly, and snapped out, “Mine aren’t. I think I am going to go and look at shoes, since mine won’t get worn out. Sorry your feet are tired and you want to die, but I can go eight miles per hour on this thing, I can go back to the future.” I went then and found my caregiver.

Could I have handled that better? Probably. I have issues with being told to just die. My father spent my entire childhood making sure I thought death was the easy way out. I am also feeling a bit depressed due to the acceptance stages of new disability and a side effect of wanting to confront my mother, but not being able to do so. I am aware eventually she will read my blog, but I plan to talk to her before I give her the URL.

Some of you may comment that the disabled having nothing to do with Hitler. Sorry, but it wasn’t just the Jews who were killed. Disabled people, persons who were not just white but of mixed race. Disabled people, persons with even manic depression, and sometimes someone who pissed the Reich off were all labelled. One of the many labels I would’ve worn in the concentration camp was Blod or German for stupid. A black square with white letters. I never will forget, neither should you. Yes, genocide is horrible, but, trying to eradicate disability or assuming that all disabled people are second class citizens? This is just as horrid. I am afraid of the future, I am afraid that assisted suicide will become legal, and that more pressure will be put on the disabled.

This happened after my uplifting moment, but I am excited about that. I was in another store, hanging on tightly to this high fashion top that was going to run me four dollars. It’s in style right now, my size, four dollars, and not puce! I had to have it. My rental scooter started bucking like a Bronco. I lost total control over it and almost ran through a window. A man in a wheelchair blocked my exit point with his body, thankfully neither of us was hurt. I looked up and I recognized him from the Veteran’s Shelter I used to volunteer at. This shelter is just for the disabled veteran. He has grown in health and was looking so happy. He did not recognize me. I thanked him for his service to our country and for saving me.

He expressed gratitude at my understanding the sacrifice. He became a para when he took a bullet in his spine for this country. He expressed his frustration at seeing any other person, especially a young person in a chair. We talked, and I told him I sacrificed my spine for children. We communed in the honor of life itself. He told me it was good to see someone who wasn’t down about their chair. He’s in a nursing home because he cannot care for himself and although home health care would likely be enough, Medicare denied him this. We exchanged information, and I hope to help him go home again. He fought so hard before for his home. I think he recognized my name, but, that does not matter. What matters is that he exuded strength, saftey, and honor.

He honored me by risking pain to protect me. I am grateful for that, how can I begrudge someone a sacrifice? I focused on this man when I wanted to lose my temper with the second fellow. I know better than to yell, but, it would have felt good. There are so many times when I am told I am a second class citizen. I am first class. My significant other tells me he loves me because I am a Lady, not just a woman, but a Lady of the highest degree. He reminds me why I must maintain my dignity, and he does not see it as shameful for me to cry.

I am going to live a long time. I must, because I have so much to offer this world. Bicycles are much like wheelchairs too. They have two wheels, they ambulate for you, leading you towards a destination. The only difference is wheelchairs come inside and are differently shaped. You say our tires are dirty, I say so are your shoes. You say we make the aisles wide, an inconvenience for you who wants to over stuff your shop. I say, aesthetics. You say I am a burden to society because I am currently not working. I say society and it’s bigotry is a burden to me. I should not be assaulted when I go out because of my wheelchair.

Today is also the first time in a long time I looked at clothing that will show off my magnificent bosom. I have more than ample cleavage, and, I am done hiding every bit of it just to comfort people who expect every woman to be shaped like a hanger.

I am done with self slut shaming, and I am done with conforming to stereotypical fatty clothing. I am fat, but, I am also gorgeous. How can a person who is happy be anything else?

Do you deserve to live? I agree, you definitely do. Lets live on together in our high fashion and accessible world.

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

Whatever Happened to Baby Jane? (Trigger Warning)

Bette Davis, Joan Crawford…A movie about the horrors disabled people can face with an abuser.

This is one of the most wonderful but horrific films I have ever seen. Joan Crawford plays an actress with a jealous sister who not only tried to kill her but is now her only caregiver. Bette Davis plays all of my worst fears brought to life. She forces Joan to either starve or eat rats, her pet bird, or possibly poisoned food. Their maid, a beautiful African American woman, is the hero in this. It is she who sees the potential for something wrong and refuses to leave the day she is fired, instead insisting on seeing Joan’s character. It is she who saves her from embezzlement, being isolated, beaten, and left to die a slow and horrible death. She was cut off too, no telephone, stuck upstairs, the bell for help taken away. It is horrible to watch.Bette’s performance is that of pure evil, in the loveliest of forms.  The genius of this film is that they use clips of the actresses when they were younger. They build the story up and you feel the pain involved with Joan’s treatment.

This film also highlights the incompetence of others, enabling the abuse. The teller who illegally (possibly not at the time of the film being made) gives cash when a deposit is required. The neighbors who ignore the weak cries for help, though they may not hear. The doctors who ignore the patient’s panicked cry when she could under duress be recanting. I will not spoil the climax of the film, but needless to say, this one touched a nerve. There is murder in this story, no one wins. Hope is torn from the viewer and Joan’s character.

Gaslight with Ingrid Bergman is another film that taps on true life abuses. The abused housewife is not beaten, but is instead told over and over until she believes it that she is insane. His greed is what drives his crimes, polygamy, identity theft, and murder among them. He uses the technology of the day to prove to her she is insane. He too plays on my worst fears. He proves to me that men are evil, a blanket statement that feels utterly true while I watch this movie. It isn’t, but it feels that way. He abuses his wife, publicly and privately humiliating her, forcing her into things that were against her nature.This film was so effective it gave it’s name to an entire term in psychology. Gaslighting is the proper term for causing someone to think they are insane. There is more to this of course, but this is the best I can do to explain right now.

Why am I posting about two films made before my birth? They touched me. They burned my heart up and left me shuddering with memories. They triggered responses in me that were deeper than perhaps intended. I felt the trappedness from my previous experience. I felt the worthlessness of knowing I am wrong at all times, and that my only value to others was at their own pleasure, my own wants and needs coming last. I felt the fists of my father in me again. I felt the harsh words of burden.

I am not a burden, I am not insane, and I am free. I had to chant this at times, the wheelchair a prison during the entire time. I could see even one stair trapping me. I can only remember too well  how few people actually listened when I cried out for help. The cold stabbing feeling of being told my case was not compelling enough to prosecute, that no one wanted to protect a child from  her rapist father.

Caregiver abuse is one of the worst crimes I have ever heard of. Some call it elder abuse, but, elderly folk aren’t the only ones trapped by their bodies. Many are vital and amazingly resiliant. I am posting about these films so that you can perhaps try to feel the things I felt, in lesser measure. These films raise awareness of the plights of the hidden victims in this world. Perhaps even someone you know is enduring secret abuse. You might not be able to save them, but raising awareness even by one, can help them save themselves.

Whatever happened to Baby Jane? Be glad you are not so evil, and if you are, may you see your reflection and set your victim free.

The Wheels on the Butt Go Round and Round…

Today is a busy day, and I hurt enough to make me want to not just crawl under a rock, but to make the rock cry to share my pain. This tactic is not healthy but it is very human, so, I must chant the mantra today that makes me feel the best. “Centered, warmth, healing light, none other shall have to face my plight. I am strong, I am beautiful, I am capable, and my bed waits for me to finish my tasks.” A little long but it helps me get going with a smile. I am eating a delicious breakfast made by my Male Person of Awesomeness, while he showers. The cats are both coming on our adventures today.

This will be our first time taking William Shakespurr out with us. Today’s activities consist of Veterinarian, Bank and the oh so fun Wheelchair Repair Trade off.  The wheels under my butt don’t want to go round and round. Since the first day I got my scooter things have been falling off. Getting it out the door to the house the first time I clipped the wall and lost a chunk of the plastic frame. The second time it was better but I clipped a rock at an SCA event (pebble sized) and lost a bit more. A rattle started a bit later and here we are Six Months into ownership of my own Personal Freedom Mobile, and it is broken.

Man of Awesome loaded it into the van and bumped an empty cardboard box, and the box won. The lights died and now half the time it won’t move. The scooter seems to be defective! What a concept right? It has had power issues the entire time I have dealt with it, but, I had no way of knowing it wasn;’t normal to have it whine, vibrate, jerk about, and rattle. The death rattle grew worse after it stalled out in the new apartment. I hit the wall goooood, and broke the plastic frame, and the entire system died for eight hours. I used the wall as a pillow, since my bed wasn’t home yet and everything else wasn;t here yet. I was the first piece of decoration in our apartment, a wall fixture I might add.

All comedy aside, this experience gave me a new light on the scooter. While it sucks horrible in many ways, those ways are made up for by the fact that I can race someone to the car, and WIN. First time in my life. I don’t have to try and brace my bosom so that they don’t smack me in the face, I don’t have to worry about a dislocated knee, I can zip right out there and not even break a sweat. I also have the freedom of leaving the house by myself for the first time in years. I don’t have to hide in my room if I want privacy and solitude, I merely have to get rolling.

The Maiden of ButtWheel Repair has warned that I might not be able to get this particular chair back, and that I might want to look at other designs. What I truly want is just a wheelchair shaped item, no long nose, just a nice, cushy chair. I would need to add on a few particulars, like a basket for the cat to sit in, and my sunshade, but, after that? I could maybe make it around some of the walls in the apartment, or maybe squish into that store that is barely inaccessible. Scooters add to the inaccessibility issue facing stores and their handicapped customers, though they are great for some people.

I already miss my wheels…

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