I am very excited to be a part of an amazing project called Descendants of the Chalice doing sound design. I recently wrote a blog post for the project which I will be reposting here (and I'll share the links to our Indiegogo campaign and the Descendants' website so you can read all of the other great contributions and hopefully help us bring this project to life!)
I hope everyone has a very happy holiday season and amazing new year! I see you 2016. :)
For much of my life, my body has been enemy number one. I have been trapped in this cage of flesh my whole life and no one will let me out. I dressed it up like a temple. I treated it like a battleground. I have done everything that I could think of to flee from it.
Now I am feeling my anger. Infuriated and I’m ready to be honest about it.
I got my first period at age 11. I was diagnosed with Endometriosis at age 14, thankfully, much earlier than most people when they are finally properly diagnosed. My parents were definitely on it when it came to diagnosing the physical symptoms, however, there was very little information ever given. I was trapped in this body that was being dragged from doctor to doctor, appendages pricked to rule out anemia, countless birth control pills prescribed and consumed in hopes of lessening my pain and flow from super plus to regular, laparoscopic surgery, more invasive colonoscopy and upper endoscopy (both of which I had to remain awake for), injections of Depo Provera in my hip every three months, missing sixty days of school a year due to the insurmountable amount of pain and nausea my body put me through every month. Once diagnosed, I was given a vague description of the disease. Mostly just what can happen if you have it and what happened in my particular case. Pictures from my laparoscopic surgery showed tissue in my body that the endometrial lining from my uterus attached itself to and then continued acting like endometrial tissue creating a reservoir of blood around my internal organs. And that was it.
Is there a cure?
What causes the uterine lining to start acting that way?
So, is it an autoimmune-type disease?
Not much has changed in the almost fifteen years since I was diagnosed. (For a brief and comprehensive rundown of what is known about Endometriosis see Cristen Conger of “Stuff Mom Never Told You” talk about it here: https://www.youtube.com/watch?v=6gKU2tzv1zg ). The only difference now is that women are beginning to talk about their experiences with the disease. The physical, emotional and psychological tolls and all of the work and life experiences missed out on or moved numbly through. Lena Dunham and Padma Lakshmi spoke about their experiences in a recent issue of Lenny. Many doctors have misdiagnosed women with the disease because they are not taking the women’s concerns and pain seriously enough. As a result, doctors confuse endometriosis with other physical ailments like appendicitis or brush it off as whining or a mental imbalance. All the while women have to suffer the consequences. We lose time at school or work, experience relationship-related stress, miss out on important time discovering self-careand personal exploration. We suffer from intense pain that creates a personal culture of shame for not being able to work through it, fear of appearing weak or drawing attention to oneself, and on, and on, and on.
As I read their anecdotes it felt as if I had written them myself. Their feelings, fears, and experiences felt almost identical to my own. One of the most difficult things about having Endometriosis was how alone and unrelateable I felt. Lena Dunham and I are very close in age and if I had known that I wasn’t the only adolescent person to have been diagnosed with this disease, it would have made all the difference. Maybe I wouldn’t have beaten myself up so hard about feeling like a failure of a human being. Maybe I would have given myself a chance to be a teenager during the times I was feeling well. Maybe I wouldn’t have gotten in the habit of living my life totally disassociated from my own body. Maybe I would have felt that I could leave my room and be more open and engaged with my family. The fact that this is all coming out now, as opposed to then, points to some much larger culprits that had some very conditioned and deeply ingrained messages. I’ve begun to realize that it’s much bigger than just the disease.
I’ve begun to realize that every flicker of rage that moves through me has been greatly displaced. Instead of directing my anger to where it should be going, and should have been going my entire life, I harnessed and focused it all on my body. My anger is more appropriately aimed at both societal conditioning and from certain messages I received in my particular family culture. Our lives are so gendered and, as women or women-presenting people, so much of “taking care” of ourselves is wrapped up in superficiality that makes us products for consumption and use of the male gaze. And my reaction to that is typically, “fuck that shit” and then refuse to make any decisions at all.
Instead of taking care of my body, I grew resentful of it and ignored it.
There is something about getting my needs met that feels destructive. A feeling that if I am happy and taken care of, that it’s at the cost of other people’s happiness and well-being. I don’t know whether it’s competitiveness with other women that has been fed to us through the patriarchal spoon or the fact that we’re also taught to be sorry for everything including our own existence. Most accurately, it’s probably both and was definitely a major reason as to why I’ve had a lot of trouble asking for help and really feeling the pain that I was going through. The message that women are the weaker and fairer sex coupled with the idea that there can only ever be one queen bee in any situation contributed heavily to my feelings of inadequacy and that I needed to be tougher and stronger if I wanted to be the best and to live life on my own terms. Every time someone made a comment about my naturally thin frame and every time I got sick were instant reminders that my body was useless and only holding me back.
My body has been the enemy for so long and my uterus, in particular, has been such a burden on me that I even refused to engage in any potential romantic relationships because I felt that I would only be a burden to the other person. Who wants a diseased girlfriend who’s scared to have sex? In this hyper-sexulized culture we live in, I figured no one would be willing to be patient with me, especially as a teenager. My feelings and pain would never matter that much to anyone.
And I was right. My pain didn’t matter when I got my first period and was made to feel like I was being a jerk because I was hurting. My family had gone over to our best family friend’s house for dinner, as we often did, and I spent the entire time sitting on the couch in front of the TV with my arms crossed over my stomach. It didn’t feel like a normal stomach ache and I really just didn’t feel like I could do anything but sit. On top of that, I remember it being insinuated to me that I wasn’t being a good sport or was being high-maintenance or something, which, of course, hurt my feelings and made me feel even worse. It wasn’t until we went home that night and I went to the bathroom and saw the blood in my underwear that I realized what happened. I showed my mom, she confirmed, and that was that. My pain didn’t matter when I would close myself off in my room because I had no other coping skills and felt like I was a monster or just nonexistant to my family. My pain didn’t matter when my grandmothers would continually bring up and imply the importance of having children. My pain and my being didn’t matter when I was raped by a coworker and earlier in the evening when he told me that my idea of consent between two people was “a fairytale.” And in that case, I disconnected from my body a second time.
Getting basic needs met has typically felt like a struggle. While I’ve been getting better with this aspect, paying attention to my body and the signals it’s sending me, I sometimes relapse and fall back into not responding to those signals. I’ll wait a ridiculous amount of time to go to the bathroom, I won’t eat for very long periods of time. I only go to the doctor if I’m out of contact lenses or my birth control prescription needs to be refilled.
Self-care is a tricky thing. It’s difficult to know what it actually means. We’re constantly telling each other to take care of ourselves, but what does that really entail? Is it annual doctor visits and regular yoga and kickboxing classes? Maybe its nights out with the girls and a planned vacation here and there. Maybe. While all are important, they also just feel like another thing I need to put on my to do list in order to fulfill the idea that I have a healthy, fulfilling, and successful existence. Even if I’m having a really good day, or week, or few months I never feel like I’m fully taking care of myself. I feel like I’m constantly sacrificing something. I wish I could just go through life feeling nourished, accomplished, and driven. I wish I could feel comfortable in my own body without having to constantly be reminded of or defined by my reproductive system.
In my family, and as I am realizing more and more in broader society, if you didn’t like something that was going on or if someone was doing something that made you uncomfortable it was emphasized that the only thing to do in those situations was ignore it. This way of thinking is inherently fucked for many reasons. I’m sure the reasoning behind it is that it is assumed that the offender will eventually tire of doing the offensive thing. This may be true, but these are the other things that are taught in those situations: entitlement, disregard of other people’s feelings and boundaries, lack of compassion, lack of compromising skills, lack of personal accountability and responsibility, and lack of empathy. What it teaches the one who is taking offense: your feelings don’t matter, you’re boundaries don’t matter, and neither actually exists. The one being offended is made to deal with and be responsible for the offender and the offences against them. In my life, receiving these messages lead me to down-play any feelings or gut instincts I’ve had in both benign and dangerous situations as well all experiences wonderful and terrible.
If a family member or roommate does/says something that bothers me. Avoid. A cat-caller harasses me on the street and then gets angry and demeans me, chases me down the street, etc. Ignore. I accomplish… anything. It’s not a big deal. And in the case of the more terrible ones I always had this sense that they were somehow my fault. That in some way I chose these experiences and feelings rather than more reasonably they were actually someone else’s fault, or an experience of a normal range of human emotion, pain from having a disease, or pain from just going through puberty. It was as if the Endometriosis was my fault, which snowballed into it being my fault when I was rear-ended by a plumbing truck at age 18, it was my fault when men treated me poorly and made me feel uncomfortable, it was my fault I was raped. But none of that was my fault. I didn’t choose any of those things. Who in their right mind would? Just the thought in itself, is completely ludicrous. Those thoughts happen, when feelings and experiences are ignored. The emotional and psychological effects last much longer and can create much deeper cycles of dysfunction and stagnation if they are not worked through and validated from the get go. Telling women that suffering just comes with the territory and to just deal with it, is a problem.
The feelings of being a burden and a monster were some of the other baggage I have carried moving forward. And it has taken me a lot of practice of getting in the habit of sharing my experiences and authentic feelings and realizing that I’m not going to destroy the person I’m sharing them with. I’ve often been told I’m cool. I never intended to be “the cool girl,” letting situations roll off my back and giving everyone I meet the benefit of the doubt even if they crossed some of my own boundaries and continued to do so. As laid back a person as I feel that I am, I do think it partly became a habit because I never wanted to seem like a crazy bitch and I figured if I let people be who they were, they would return that favor. I didn’t understand for a long time that I could accept people the way that they were and still have boundaries, standards, and needs. And that if anyone felt I was a crazy bitch for having those things and expressing them, then those were probably people I could and should leave behind.
I also began to realize that keeping all of my experiences and stories to myself was what was creating a huge burden on me and when I started to practice sharing I found that I wasn’t alone and I wasn’t a monster. So many of our stories are shared and we don’t always know that because society has shamed our completely human experiences into silence. I volunteered to escort patients at an abortion clinic this recently. There were only three protesters there (since the terrorist attack on a Planned Parenthood in Colorado, the swarms of regular protestors that typically line the block have laid low) and a reporter. The reporter asked me a couple of questions one of which was “Do you feel safe as a volunteer?” I replied that I did, although, I know the great risks in being an escort. The reality is I could be killed volunteering at an abortion clinic, but that the risk is worth it if it begins to change the perception of women being shamed for being born female and for making decisions for themselves. All decisions, let alone ones concerning our bodies. Because the reality is also that because I exist in this world as a woman I am a target no matter where I am. Until the ideas and the language we use and are systematic in all of our institutions to keep that true are discussed, challenged, and dismantled myself and all other women are in danger of being assaulted and killed no matter what.
Why don’t we know more about Endometriosis even in the 15 years since I was diagnosed? Why did studies on the clitoris only start being funded in the 1990s? Why is female pain still not taken seriously within the medical community? Why is it that it’s accepted that boys just play with their penises right out of the womb, but the fact that I and other girls were exploring their bodies and masturbating at 4 or 5 years old and there’s no conversation of it? Why is our sex education only in relation to birthing children while boys get to learn how their bodies actually function? As women, we don’t learn about how our bodies work sexually and we are completely divorced from our anatomy in a way men rarely ever are. We are so objectified and so many women only talk about their bodies with their sexual partners and maybe their doctors that it’s hard to not think of our physical beings of separate entities to ourselves. I find myself guilty of this constantly, literally thinking of my body as a vehicle to get me from point A to point B and nothing more. It’s taboo for women to talk about our sexuality, even with doctors, except out of the context of being desirable and exciting enough for a man. (For another excellent point of all of these topics, see our project’s wonderful creator Arden Winant’s contribution from a few weeks ago). This heteronormative lens and our lack of knowledge of ourselves only gives us a sense of shame about ourselves.
Furthermore, why are sex education classes not coed? Seriously, if boys (let alone girls) had to learn how the vagina and clitoris function maybe we wouldn’t have to deal with such terrible and disappointing sex.
Women are not a mystery. Saying shit like that is a cop out to not see us and treat us as fully-realized human beings and just leave us behind.
I am not a mystery. I and everything I do is not an extension of male fantasy. I am in the audio production and engineering field and when I go to an Audio Engineering Society Convention, I am not the wife or daughter of whatever male I’m standing next to, I’m your fucking colleague. I am allowed to say fuck and I am allowed to experience and express the completely normal human emotion known as anger. There is generally a lot of talk about “empowerment.” I honestly don’t know what that is. “Female empowerment,” “sexual empowerment,” I don’t really know what these things are supposed to mean and I don’t think I really care that much. All I feel like I can do is help myself live. What did emerge from thinking about these moments was just the idea of care. How do I care for myself in the most trying moments? How do I allow people to care for me in moments where I need it? How do I celebrate myself when things are going well? These and many more questions have been swirling in my subconscious and in the past year have been the main focus of my life. I go to therapy, I share my stories with friends, family, and whoever else I’m ready to share them with. I work my ass off 1) because I love it and 2) because I have to prove I’m on the same level as men by being better than them (hint: because vagina). I go out with friends, I go out in general. All in hopes that it will make my life better and will make the lives of women in general better. I’m still fuming as I write this because the end of being treated like second-class citizens is nowhere in sight and it’s hard going out everyday knowing that I am at risk just because I happened to have been born in this body and I choose to actively exist in it. I still hate that I am made to be aware of my vagina and uterus every single minute of every single fucking day. However, I am no longer in the pain that I once was in and I am continuing to heal. I will no longer accept that suffering is my cross to bear. I will not be silenced.
To support women and teens with Endometriosis and research of the disease please visit the Endometriosis Foundation of America (https://www.endofound.org).
To support women’s health, in general, please support Planned Parenthood and other similar institutions and organizations (https://www.plannedparenthood.org).
Descendants of the Chalice (https://www.descendantsofthechalice.wordpress.com)
Our Indiegogo campaign: https://www.indiegogo.com/projects/descendants-of-the-chalice#/
Follow Katie’s adventures @ktjlouch on Instagram
Her misadventures at Katie Louchheim on YouTube
And her specifically musical adventures at www.katielouchheim.com