"Birds make great sky-circles
of their freedom.
How do they learn it?
They fall, and falling,
they are given wings."

-Rumi (translated by Coleman Barks)

Wednesday, April 21, 2010

The V Word

I don't have much time to write, these next two weeks are filled with due dates and appointments. But writing usually gives me some sort of clarity, so off I go.

A lot has happened, so I'm just going to rapid fire here to catch you up. I do have a big tear in my right hip as well. I'm scheduled for the same surgery I had last summer on June 4th. Goodbye summer plans. But I'm grateful for the time I have before my job starts in August. I'm just anxious because it's going to be a process going through the same surgery again. At least I know what to expect.

I am also meeting with a new specialist to address the tears in my pelvis, which I think I will also need surgery for and that would have to happen before hip surgery. I am getting another MRI/consult next week with Dr. Meyers in Philadelphia. I'm very interested to see what he says.

I have not been taking medication recently because I want my mind to be clear as I write my thesis. This means I'm in more physical pain, but I've been finding ways around that. A good friend led me to this website, which has been a lifesaver. They are ice pack pads essentially, and pretty discreet and great for class. They are much easier to hide with baggy pants, but either way, they make sitting a lot easier. I go through about two a class and highly recommend them.

There's a lot of feelings right now, but I don't have the energy or the time to go through them all. I have a lot of stories, but for now, I will leave you with the one from last night. It was my senior WGS class capstone activism project. It was called the F Word Experience. The "f" word- feminist- is not so agreeable with others. It remains a loaded word because it carries many negative (and untrue) connotations. Our class wanted to change this so we had a big event with provocative feminist artwork, and then an event with a video, keynote speakers, personal stories, and dialogue.

Last night I was one of the keynote speakers and I talked about my story, my "V" word. I was very nervous to read it in front of a large-scale audience. It's one thing to write a blog and hide behind my computer, but it's another to stand up and physically speak in front of a crowd. Making up the audience were people I knew, strangers, best friends, professors, high level college authority figures. Some knew my health story and some did not have a clue. I wasn't just nervous, I was terrified. I wanted it to be received correctly. I wasn't looking for pity, I was looking to be empowering and to spread awareness. It was difficult reading the speech because it's always difficult re-living my story. I especially got choked up when mentioning the strong support system I have who was there to support me that night because they have saved me and they are the ones that get me through. After I spoke, I thought I would feel a wave of relief, a lessening of my burden. But I didn't. I got back to my seat on stage and I could not look anyone in the eye. I kept my eyes on the floor because I was too terrified to see people's reactions. What were they thinking? What were they feeling? Is this now how they saw me? I keep saying I don't want this to define my life, that there's so much more to who I am. But lately it has taken over. I received such kind words after the event, but I was still nervous, and I'm still shaken up as I write today. It was an emotional experience, but in hindsight, I'm so glad I was able to do it. I spoke last night for the women who email me who can't even tell their families or friends. I spoke last night for all of us. And this is what I said:

Coming into my freshman year of college, my life was dedicated to activism. I was extremely involved in global organizations, working with young people in war-torn countries, and planning on a career as a diplomat.

This was my life when suddenly I had to turn the attention to within, to myself, which was very unusual for me. I had to put aside my passion of helping others and instead had to become rather selfish and focus on myself. I could not go out and solve the world’s problems without first solving my own.

It was at this time, that my vagina become my world, quite literally everything centered around it. And now, more than three years later, it is still my world. I am conscious of my vagina every second of every day.

This is because during my freshmen year, I experienced a sharp vaginal pain randomly one June afternoon. My life from that point changed forever. The person I am today has been shaped by my struggle, by my battle with my vagina. Over the course of six months, the intense pain I experience daily was misdiagnosed five times. The medical community did not give me answers; everyone was puzzled. Gynecology experts simply waved me away and assumed I was either making up my pain or suffering from the side effects of birth control. One horrible night I was in such intense pain that I was rushed to the emergency room and rudely treate by the male attending physician. He automatically assumed I had an STD because I was complaining of vaginal pain. While suffering from physical and mental pain and confusion, I found myself on the defensive, with my vagina being continuously sexualized, especially by the medical community. I realized at this time how taboo the vagina is and if I were to survive, it would be something I must overcome.

It was not until my sophomore year that I was properly diagnosed with vulvar vestibulitis, a chronic pain condition almost unheard of, yet over a million women knowingly or unknowingly suffer from it. I say some unknowingly suffer from it because there are women who are either too afraid to talk about their pain or are just unaware that their suffering is shared by others. Though it was a relief to finally have a diagnosis and answers, I still had the burden of keeping it a secret from family, friends, and professors simply because it had to do with my vagina. I felt nervous and embarrassed and wished it was a chronic back condition so it would be easier to talk about. I could easily say why I needed an ice pack for my back, but it was very uncomfortable explaining why I needed an ice pack or cushion for my vagina. Then I had my f-word epiphany: I realized that this had to change: I had to help shift societal views of the vagina.

Vagina, vagina, vagina. This is the V word everyone so cautiously avoids. Like the F word, it has many incorrect connotations, and through my experience, I more than ever want to reclaim it.

It has not been an easy process. My diagnosis has since shifted and I am consciously seeking new doctors and new answers. I am tired of carrying the burden just as I am tired of asking for help and being in pain. Many people have not been understanding. But many more have and I am eternally thankful for their support.

Though it is a long struggle which I am still battling, I am no longer nor embarrassed of my vagina. I started a blog three years ago originally intended as an outlet for myself, which has since turned into a support system for women around the world. The intro at the top is the epitome of my story here today: “Vulvodynia is a chronic pain condition affecting millions of women in our world today, yet it continues to be ignored. There is no current cure. In November 2007, I was diagnosed with vulvar vestibulitis, a subtype of vulvodynia. This blog exists to spread awareness because we’ve been silent for too long. I write to expose a taboo subject. I write to form a knowledgeable and supporting community. I write to encourage myself and others. I write in the hope that one day I will write no more.”

After this blog, I no longer hide behind my vagina and hope that some day all women are comfortable enough and free to talk about their vaginas in a nonjudgmental world. This is my wish. This is my expression of feminism.

3 comments:

Sarah said...

Wow. I really admire you. That was so brave to say all that in front of so many people. Thank you from someone who is too scared to ever do something like that.

Faith said...

I admire you too..for giving that speech and for continuing with your education despite your Vagina and the pain it causes.

I have just recently been able to tell my friends..and I think they understand me more now.. In the past I would just say it was my bladder...now I say it is the vulvodynia and the muscles.

You will be in my thoughts with your upcoming Dr appts. Hang in there and dont give up.

Sarah (4 years pain) said...

I was recently diagnosed with this same problem, and am not yet sure if this is the final answer or one in a long string of misdirections. For other women like me, I want to suggest a book that describes much of my condition, and suggests a treatment plan (although I am still working up the courage to follow it, as it is very thoroughly life changing). It is called "The yeast connection and the woman" by William Crook. The book was popular in the 80s, and then suffered from a common medical plight: diagnosing everybody with a problem, and then deciding nobody has it; when in reality it is more likely that some people do have the problem and it is just rare. After the author died, a woman took over the book and started marketing it as a weight loss solution. It is not. I thought of this book when I read your story, because my problem also began soon after I started using birth control pills (and antibiotics). The book explains how that can relate. It is not about a common yeast infection... you can have this problem without having a vaginal yeast infection. If this information doesn't help you, the blog owner, then I hope it can at least help one of your readers.