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The Broken Temple

January 29th, 2014 by
The Broken Column, Frieda Kahlo

The Broken Column, Frieda Kahlo

 

This is about my body. My body is many things. It houses my soul. It has caused me more suffering than possibly anything else in my life. And, also, it’s beautiful. Sometimes, I forget that. Too often, I forget that.

There is a conflict between how I view my body and how it is viewed by others. This follows from the fact that they don’t have to live there. My body is fairly normative in appearance, but that’s as far as it goes. I have a chronic illness, which is mostly invisible. I’ve heard so many well-meaning friends and acquaintances have uttered the phrase that every invisibly-disabled person knows well and hates deeply: “but you don’t seem sick. You look so healthy.” When your body doesn’t function the way it’s supposed to, and society confirms this by constantly reminding you how pitiable and worthless you are, your healthy-looking body becomes a hateful shell, shielding the dysfunction that lies beneath. You walk a line between wanting your illness to be acknowledged, and not wanting it to eclipse the rest of your identity. It can be hard to see value in your body, or yourself.

Body worship is one of my favorite types of play. It’s very meaningful to me for many reasons, with many layers. On the surface, there’s my dominance; I am a fairly stereotypical dominant in many ways, one of them being that I love having attention lavished upon me. But it goes deeper than that.

There’s really no way to look at my body’s defects in a positive way. There are positive things that have emerged from it, such as greater self-awareness, the connections I have made with others in the disabled community, and activism I have participated in that I likely wouldn’t have otherwise. I am grateful for these things. But, in addition to limiting me, my malfunctions cause debilitating physical pain in many parts of my body, as well as fatigue, seizures, and more. The secondary effects are also numerous: frustration at my doctors, who are not equipped to deal with an obscure and untreatable illness such as mine, frustration at society, which is not equipped to deal with a broken person such as myself. It is, at times, difficult not to turn these feelings inwards, and feel hatred towards my own body.

On a physical level, body worship reminds me that my body is capable of feeling pleasure. That’s one way in which it does function, and when you spend so much time in pain, pleasure becomes something of solace. When I go for long periods of time without sensual touch, it’s almost like a surprise, a feeling that I nearly forgot existed. I’m not a spiritual person, but the closest I have come to feeling spiritual is the intimate connection I experience with another person during sex.

In a deeper sense, an emotional sense, it’s empowering to have someone take pleasure in touching one’s body, and being shown that pleasure. Even though I know, on some level, that my body is beautiful, it can be very difficult for me to truly internalize that as love. Instead I externalize my feelings of hatred, convinced that no one would want something so useless, so broken. But touch that is both gentle and eager, murmuring of appreciative sounds, and tender and hungry kisses are all evidence to the contrary. It is proof. Undeniable proof that despite all that feels wrong, there is something right about my body. If I can step out of feeling resentful and broken, if I can see my body through the eyes of someone who loves it and get a small glimpse of their love, this is an affirmation that living in my body isn’t tantamount to being trapped in a cage. At times, it can be powerful perfection.

My body lies in ruins. Reverence can take many forms: sweeping my hair across my neck to kiss my shoulders, tracing my sides with fingertips, touching me, touching my body with an admiration approaching awe. These actions are transformative and I am reminded that, despite its broken columns and crumbling foundations, my body is still worthy of reverence and of love.

Courage

March 16th, 2012 by

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.”

Corpus

October 19th, 2011 by

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.