Tags » ‘agency’
March 16th, 2012 by Professor Chaos
Trigger warning: needles
The first time I ever stuck a needle into myself was four years ago. I was twenty-two. I was terrified. I had just been diagnosed with yet another enigmatic, difficult to treat medical condition, and I had been prescribed a medication that required a subcutaneous (or sub-Q) injection, a shot into the layer of fat under the skin. After a long and tedious diagnostic process, I was looking forward to feeling better, but I was still petrified by the idea of that first needle stick.
I felt completely unprepared to administer it. No one wanted to show me how to properly do the damn thing. I knew there wasn’t a huge risk associated with subcutaneous injections–as far as methods of administering medications go, they’re pretty benign, apart from the sharp pointy bit going in your skin.
Last summer I had two of my friends put ten needles into my back and lace them up with ribbon. I didn’t particularly enjoy it–I’m not much of a masochist–but it didn’t bother me that much either. It was painful, but not terribly. It was emotionally uncomfortable, but no more so than many of the medical procedures I have endured. It was a little weird, a little scary. But that’s okay. As someone whose body has endured quite a bit in the name of medical science, I feel the need to balance that out by making art with my body.What I enjoy about artistic BDSM like decorative needle play is the chance to make a point. Putting needles in my back and lacing them up with ribbon is aesthetically pleasing and emotionally unsettling; when onlookers squirm with discomfort, I ask them: Why is this more upsetting to mainstream society than labioplasty? Or high heels? Or any other way people torture their bodies in the name of beauty?
But I digress–back to medical needles. My specialist couldn’t show me how to do the injection because of insurance reasons. My general practitioner didn’t want to do it because she felt uncomfortable dealing with specialty medications. The pharmacist wouldn’t show me how to do it because that wasn’t his job. I felt like of all of these people, all of whom were supposed to be on my team, no one was willing to go to bat for me. None of this did anything to assuage my fears. While I was used to getting needle sticks–frequent blood draws will do that to you–I still wasn’t entirely comfortable with the idea of them, or the sharp pain that went with.
My specialist was the one who finally caved and extended me some kindness, the one to show me how to do it. She was very reassuring and willing to accommodate my uncertainty. First we practiced with some saline solution. I think I did it on an orange before I gave it to myself. She showed me how to uncap the bottle and disinfect it with alcohol. She showed me how to unshield the needle and draw up the liquid. She told me to hold it at a 45º angle to my skin. And then she told me it was my turn to do it.The moment of truth.
And I don’t remember it. I know I gave it to myself on the left side of my belly button and that it burned and was red afterwards, but it often burns and is red afterwards. The terrifying event itself–the poke in the skin, the push of the plunger–I have no memory of. I have given myself the same injection every night (more or less) since then. The memory of that first time has been blurred, washed away by a long and steady, day-by-day, stream of the same action.
I don’t remember the injection itself, but I do remember what happened afterwards with astonishing clarity. I remember being in the car on the way home with my mom. I remember the intersection we stopped at, because that’s when I started to panic. My heart raced and my breath came so fast and shallow that I wondered if I was having an allergic reaction to the medication. The hard part was over, and yet I was still terrified. That first needle stick that had scared me so much wasn’t such a big deal; what it represented was
. It meant a big change in my life. I felt scared and alone and overwhelmed with uncertainty of what my life was going to be like in the future. I felt weak and not at all brave.Needles have become mundane to me. Over one thousand injections later, the stick is still as painful as the first time. I barely notice it. It doesn’t phase me. It’s not because I am brave or tough or special. It’s because, if anything, I am normal. I’m human. The only super power I possess isn’t very super at all, but normal human resilience.
Soon, I will have to face another medical fear of mine. I’ll be getting a peripheral intravenous central catheter (PICC) line, a semi-permanent IV line that will start at an opening in my arm to snake through my veins into a major blood vessel and finally rest in my heart. This will be a contributing source of fluids and nutrition for me for the next two months, as my gastrointestinal tract can no longer do its job. There will be machines and bags of nondescript stuff that doesn’t intuitively seem very nutritious. There will be a hole in my body, and so there will be dressings to be changed and care to be taken not to infect the line, as line infections cause death in 15% of patients receiving this kind of nutrition. A bigger deal than a self-inflicted needle prick, to be sure, but you’d think with all I’ve been through, I could handle it. But I’m not that resilient. That statistic rings in my ears and hammers in my chest–I have a very real fear of central lines, because they end in your heart, and I need that thing to work, goddamnit. It’s one of the few parts of me that does these days.
People tell me “you’ve been through bad stuff before, you’ll be okay” and I want to hit them. I might be okay, eventually, I will probably be okay, eventually, but right now I am exceedinglynot okay. I’m suddenly transported back to that intersection in the car with my mom. I’m that twenty-two year old girl, feeling scared and overwhelmed and unready for a big life change. I feel weak and powerless and needy–all the things I hate feeling.
If courage is the ability to choose to face your fears, then strength is the quality of simply being able to ignore them. I don’t think of myself as being a particularly courageous or strong person. I’m just a person. A person who gets terrified of what the future holds and who tries to calm her fears and handle things as best as she can, but who still melts down and cries and gets unnecessarily angry at people. A person who writes emotional blog posts to try and process all the overwhelming things that are happening to her.“How do you keep going with all you have to live with?” People sometimes ask.
I always respond: “You keep going because there’s nothing else to do.”
October 19th, 2011 by Professor Chaos
Today is Love Your Body day.
I feel like a fraud talking about loving my body today–I don’t particularly love it. You see, my body and I have a complicated relationship.
Right now, as I’m writing this, I’m sitting in my hospital, in the midst of an extremely boring, 4-hour long medical test. This sort of thing is routine for me. Monday, I had another doctor’s appointment. And I have more next week. On a daily basis, I find myself in a lot of physical pain. It’s hard not to turn that physical pain into emotional pain.
My body is high maintenance. Good health is something most people my age take for granted. I envy them. I am constantly reminded that my body doesn’t work the way it’s supposed to. Even on the good days, I have to remember to take all my many medications and schedule doctors appointments.
Sometimes I can love my body. Even if I can’t forget its malfunctions, I can forgive them, and focus on the ways it can function, and revel in its beauty.
But it’s hard to love your body when it feels like it doesn’t love you.
There is a societal model of illness that is damaging. When we think sick, we think cancer. We think fighting. We think this is something that has to be overcome, a war that must be fought and won, because losing would mean death. When the illness is a part of your own body for so long, who is the enemy? I cannot fight my body–that’s a war that I cannot win, the collateral damage would be too high. Instead, I fight the voices I hear from society that tell me that healthy is beautiful, echoed by my own internal demons who whisper that if healthy is beautiful, I will always be ugly.
So today–Love Your Body Day–the day I am supposed to love and appreciate my body, I instead find myself feeling frustrated and resentful towards it. I will try and put aside my resentment and remind myself something I wrote the other night. Physical pleasure is deeply important to me. I find it empowering to take pleasure in my body when it often causes me so much pain and I take pleasure in the pleasure others take from my body. Here is what I wrote:
My body is broken. My body is beautiful. My body is perfect. No matter how badly it functions, no matter how much, at times, I hate the way it looks, no matter how much pain it causes me, after a night like tonight, after I’ve given myself countless orgasms, I can say, with certainty–my body is absolutely fucking perfect.
August 2nd, 2011 by Fizz
I spent one morning in high school leading my best friend around on a leash. Nothing fancy–just a length of cheap satin ribbon, hand-sewn around his neck with a long tail left over. I walked him down the school hallways and into my classes, where he would hop onto the seat next to me (on all fours, space permitting) and sit quietly until it was time to move on. Other students stared, either sidelong or with unabashed disgust. We soaked it up delightedly. At lunchtime, I handed the leash off to his girlfriend, and she kept him for the rest of the day. It was everyday casual fun to us–a running joke in which he was our plaything.
Why did it take a decade after that before I considered I might be something called “dominant”?
In 2007, still more than a year before I met the person who taught me the term “D/s,” Bitchy Jones was asking:
If there are twenty submissive men for every dominant woman – where are the other 19 women?
19 out of every twenty dominant women aren’t happy or comfortable with femdom as an identity or a place to live. That’s a lot.
95% of dominant women aren’t comfortable in femdom.
I was one of Bitchy’s nineteen women. I had no image of dominance other than the PVC-encased dominatrix, which–while fun to look at–sure isn’t anything like me. Femdoms were supposed to be tall, skinny, and busty, projecting feminine desire while sneering down at their groveling submissives. From the first time I saw such an image, I could feel the ache of a craving for something in it, but it paled beside the strength of my knowledge that I could never be that woman. I’m not skinny. I’m not busty. I’m not feminine. I’m not even especially tall. I’m a fat agender person who keeps medium-sized boobs under loose, comfortable shirts, and if I’m honest I’m a total softie with the people I care about. “Kink,” in my understanding at the time, was something for pretty, sexy, confident people: nothing like me. “BDSM” was an abstract fantasy, something harsh and angry rather than something that real people around me were doing with their loved ones every day. In that twisted model of the world, not matching the classic femdom image didn’t just make me not a dominant. With no understanding of the breadth or depth of possibility, much less awareness of the conflation of terminology, I actually believed I was not kinky.
I got an instant message recently from a friend I haven’t seen for a few years. She asked how I was, and I told her (among other things) that I’d been exploring the BDSM scene. She asked me some probing questions, confessing that the idea of dominance intrigued her, so I shared some of what I’ve been learning. She had no idea that BDSM doesn’t have to be about pain, or that you can still be dominant when you’re the one receiving pleasure. She felt guilty for being turned on by the idea of calling a man degrading names … and was amazed when I told her that some men are turned on by that too. This is someone with whom I’ve spent many a late night talking about sex and relationships, but BDSM had never come up before. I didn’t know she was interested in dominance or humiliation. From the sound of it, she hadn’t either. My friend, all this time, had been one of Bitchy’s nineteen missing dominants too.
The Edukink teachers tell a story about a man who came to an introductory BDSM event, for his first time, at quite an advanced age.
“What kept you away so long?” they asked him.
“Well,” he said, “I always knew I was kinky, but I was married for a long time and I figured my wife wouldn’t be into it. Not long ago, though, my wife passed away …
… and then I read her diary.”
There was a pause, in the class where I heard this, and then a collective gasp.
Hearing that story secondhand breaks my heart. My own lived experience, though–my own, even so little, wasted time–makes me furious. I’m furious because of how long I believed I wasn’t even worthy of love or desire, much less cool enough for “kink.” I’m furious because, while I’m writing this, kids are killing themselves to escape oppression instead of celebrating love for whomever they love. I’m furious because shame and shameless fiction are being used every day to justify abuse, while sexuality without shame is censored. I’m furious because we have pulled a mask over our own collective face, a painted illusion of what is “perfect” and “normal,” and we are suffocating ourselves with it.
I’m furious because not conforming to a stereotype robbed me of my identity.
I am furious and achingly helpless, knowing that somewhere out there, right now, there is another shy fat perverted gender-atypical teenager being told over and over that they cannot be beautiful, sexual, or kinky, and I don’t know how to find them and convince them it’s not true. All I can do is write and hope they hear me.
Are you there? Listen:
There is no invisible line dividing you from the people who are allowed to have healthy, fulfilling, kinky sex lives. You don’t have to look like people in magazines. You don’t have to fit a prescribed role, gender or otherwise. You don’t have to be willing to fuck anyone, or limit yourself to fucking one person, or do either of those things but replacing “fuck” with “love.” You don’t have to be healthy or neurotypical. You don’t have to be between eighteen and thirty-five, or have any of the accepted mainstream fetishes, or make enough money to fill your closet and toybag with leather. Just the way you are right now, you already deserve to have healthy, respectful relationships, whether or not those relationships include BDSM or sex or love or none of those things. You deserve to explore what you want, to have clear and honest information available to you, and to express yourself safely. You deserve these things, not because I have invited you into my elitist kinky club, but because healthy, informed sexuality is for everyone.
And that fury I mentioned? That’s why I’m here. It’s why I’m writing down the story of my own exploration, even the parts where I’m vulnerable and afraid, and why I’m doing it somewhere publicly accessible. I may not be loud enough alone to be heard over the cacophony of messages informing us what we must be, but frankly, I do not know what else to do. Maybe, if I’m strong enough, I can at least make a counterpoint ring out a little more clearly.
June 20th, 2011 by Professor Chaos
Image: Close-up of legs and feet resting on a footrest and gray wheel of an electric wheelchair. Feet are clad in black patent-leather maryjanes with 4-inch heels, laced with ribbon.
When this picture was taken, I had barely begun adulthood and I thought my life was over. I was twenty-one. Many of my health conditions were undiagnosed or untreated. I was sick. I was tired. I wanted to think of myself as strong, but I was just a kid who was lost and confused because my body was breaking. I felt isolated from my friends, who couldn’t understand what I was going through. I couldn’t take care of myself very well. I was so tired that getting out of bed took a huge effort. If I wanted to go somewhere farther than my apartment, I had to use a power chair.
I have never felt less sexy than when I was in my wheelchair.
My chair is not sexy. It is upholstered in a color I can only describe as “medical gray,” a color that says “I have zero personality.” It is a color that says “I am functional and not sexy, because why on earth would I need to be sexy?” The plastic of the chair is red, but not a “fuck me” red. It is not a red that evokes any sort of lust or hints at any secret desire. It is a “we needed to make this a customizable, so you have a choice of red or blue, isn’t that nice” red. The chair as a whole is bulky and not especially well-designed for comfort. Form, I suspect, was not a factor in its design. It is simple, but inelegant, minimalist only insofar as it has few features. It is almost purely designed for the function of getting from point A to point B, and, truthfully, not very well even for that.
Disabled sexuality is virtually erased in our society. People with disabilities are, at best, considered nonsexual, entirely lacking in sexual identity. At worst, we are seen as perverts merely for having sexual desires. And we are, above all, undesirable. The aesthetic of my power chair reflects this–why bother make something sexy when the person using it isn’t going to be having sex?
There is a difference between impairment and disability. To borrow a definition from Stacey Milbern, “impairment is the reality of what your body is able to do, and disability is what society disallows your body to do because it has an impairment.” I have a degenerative illness. Whether I am in a wheelchair or not, my body is impaired. Pain and fatigue are not perceivable by the naked eye. But once I sit in my wheelchair, my disability becomes visible and I can no longer “pass” for able-bodied. When I sit in my wheelchair, the status of my disability does not change, but the way society views me does. Suddenly I am an object of pity rather than desire. When I roll down the street, people avert their eyes.
I don’t want people to see “past” my disability. I want them to see me as a whole person, including my impairments. I have fucked someone in my wheelchair. (I have fucked a couple of someones in my wheelchair, actually, I mean, not to brag or anything.) It was physically awkward and uncomfortable, and also? incredibly hot, because I was living out this idea, that my illness is a part of who I am, deserving of love, just like the rest of me. I also tended to dress more provocatively when using my chair for a similar reason–I wanted to forcibly turn people’s eyes toward me, to demand from them the desire that I knew I deserved.
The photo at the beginning of this post is one of the oldest sexy pictures I have of myself. I took it to make a point. I wanted to confront people with their preconceptions about disability and desirability. With this picture, I wanted to do what social norms prevented me from doing, to scream, “Look at me! SEE me. Recognize me as who I am, a sexual being!”
I no longer use my powerchair. I still have it, but I am on a combination of medications that render it unnecessary, at least for the moment. I do still use a manual wheelchair in certain circumstances. I dream of the day when pushing my wheelchair is seen as a service, not a chore. Some day sleek, sexy wheelchairs will be the norm. Some day someone will worship my wheelchair, and me, in my wheelchair. When that day comes, I will sit as in a throne, and I will be powerful and broken and beautiful and whole.
June 3rd, 2011 by Fizz
I had the conversation again today.
A woman passed me on the street and called out, “Man, I wanna do that to my hair!”
Without missing a beat, I called back, “Do it!”
We stopped and talked for a minute. She said she really wants a mohawk, even though her friends think it’ll look weird. I told her what I tell everybody: Do it! It’s the only way to know if you’ll like it. If you don’t, it’ll grow back. You’re a grownup, and it’s your hair! You can do whatever you want with it! We were going opposite ways, but I left her with an enthusiastic smile.
This happens often enough that I’ve had a chance to experiment with different responses. Once, after asking the person if she minded me taking a minute of her time, I actually tried explaining why I’m so encouraging, but I’m still not sure I got through. Here’s the whole story; maybe writing it will help me figure out how to convince people of its point.
There have always been people I admire when I see them in the street–which is to say, like anyone, I have tastes. I enjoy seeing people who are well-dressed and together-looking, people with big smiles or silly hats, people in bright colors or strange combinations of them, short skirts, cool socks, leather jackets, goths, punks, just about anybody who stands out. When I would invent characters or avatars for myself in games, I always tried for interesting-looking, much more than for conventional prettiness. I almost never tried to make them look like me.
In real life I wore shapeless black clothes. I never thought about taking care of myself. I didn’t talk to people who weren’t already good friends. I didn’t get a lot of compliments on my appearance, shockingly, but when I did I didn’t trust them. If you’d asked me then why I didn’t wear the short skirts and other sexy things that I liked, I’d have said “It wouldn’t look good on me,” or “I don’t want the attention,” or “They don’t make those clothes for fat girls.” In short, that I couldn’t pull it off. That’s the key to the underlying feeling–that some people can do it, but I can’t. That we are different things. I wasn’t conscious of this then, but looking back it seems so obvious.
The epiphany was a recent step in a long process of bootstrapping my self-esteem, which ranged from starting to have sex (apparently my body’s not horrifying!) to getting out of a long relationship that had been slowly been drained of respect (I’m worth something!) to mastering my Puppet (I can take control! And I like it!). It was helped along by getting to know some of the sorts of people I admire. (It turns out they’re just regular folks!) Someone lent me a copy of Nonviolent Communication. (I have agency!) And eventually, something clicked:
The only difference between me and the people I admire is that I have not yet chosen to do the things I admire them for.
I started doing them.
I shaved my head. After it grew out a bit, I asked a friend to trim it into a mohawk. I started wearing short skirts, when I felt like it, and at other times a leather jacket with skinny jeans or a vest and tie over a compression tank. It turns out they do make sexy clothes for fat girls, and I look hot in them. I started smiling more. I smile at strangers; a lot of them smile back. I talked to people more. I started learning to play the guitar. I went back to school. I was more open about my feelings, even when it was scary to do so, and I became a better friend.
I learned to take a compliment. I had to learn to take a compliment, because I can barely walk down the street these days without someone telling me I look good, or I’m beautiful, or they love my mohawk, and they’ve always wanted to try it but they can’t–or they’re scared to–or they would, but, well …
And I look them in the eye and say, you can.