Wanting

I've been reflecting on the act of wanting and the role it plays in my life.

Growing up, wanting was "bad." Wanting was covetousness or greed. Even if you wanted to do something good for the world, that was the deadly sin of pride. No matter where you stuck your foot out, wanting was trouble.

But it's really hard to get through life without wanting.

If you are going to be a productive member of society, you are going to want things. Some of those things are small and mundane, like paying the bills or remembering to buy milk. Some of them feel big and important: wanting to be professionally successful, or to find a partner, or to have children. 

Love, art, healing, connection, wisdom: so many good things come from wanting.

Even though I left the church where I learned that desire was bad over fifteen years ago, I still find the lessons ingrained in my mind. It's a reflex for me to reach out and then just as quickly pull back, before anyone has a chance to reprimand me.

I have come to notice what a contorted life that leads me to live! It's very hard to go after a goal if you don't allow yourself to want it. I find myself walking sideways and bending into all kinds of weird shapes as I try to get what I want - without wanting it. Tricky. (Not surprisingly, this method is often unsuccessful.)

One side effect is that everything has a back up plan. Instead of applying my immense creativity into getting what I want, I pour it into coming up with alternatives and trying to convince myself that those would be fine, too. Sure, deep in my heart of hearts I desperately want X but of course Y or Z would be fine! Just fine!

It's the curse of the good girl. Ugh.

So lately I have been playing around with actively wanting. What does that feel like? What does it taste like, to unabashedly want? To celebrate and honor my desires? (Yikes, just writing that I can feel the disapproval wafting from my childhood.) 

I have been told that wanting is courageous because it is a place of deep vulnerability, and I can see that.

But I am surprised to find that when I want, I feel grounded. I feel whole. I'm not lying about who I am or what my values are, or trying not to take up space, or trying to make someone else happy.

There is a flavor of wanting - proudly wanting something that is in line with your values and soul purpose - that has so much delicious integrity to it.

Really???!!! Really. (Why didn't anyone tell me that?)

When I fully want something, the gates open. My energy is cohesive and directed. I'm not scattered, trying to be a non-being.

This is a new world for me, for sure. 

* * *

It is fascinating how desire can be so blatantly written off as "bad" when it's the impetus for all that is good in the world too. As far as I know English doesn't even have a way of differentiating between desires that bring us closer to the divine and those that bring us farther away. Sure, we all have desires that are worth overriding (like cutting someone off in traffic or generally being a jerk) but desire also brings us untold acts of love and kindness and beauty, fueled by our desire to connect with the infinite, ourselves and others.

Those are two very different things. Shouldn't there be two very different words to articulate them?

And isn't it also fascinating that desire and sexuality and creativity are all so intertwined, and that female desire is, in so many forms, taboo? (Are people scared of how much badness we would bring to the world if we connected to our desire, or are they scared of the potential tsunami of goodness?)

Of course, this being written by me, it all comes back to my body. How fascinating that my female organs - my organs most associated with fertility, creativity, pleasure, and yes, desire -have struggled with so much dysfunction and pain in this lifetime.

To Western medicine, my v pain is a chronic pain "disorder." Chronic pain doesn't make sense within that worldview. But sometimes when I step back and look at what I and so many other women go through on a daily basis, I'm like geez, no wonder my vagina spent so many years yelling at me to change.

I don't want to be in pain or wish it on others, and I am grateful that I have come so far in healing, but boy, don't tell my body that she didn't have a reason to send out distress signals. 'Cuz by golly she did!

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PS Did this post get your brain gears crankin'?

Feel free to start a conversation below (it's okay, you can be anonymous)!

Cancer vs Chronic Illness

As of two weeks ago, I officially have cancer: basal skin cell carcinoma, arguably the easiest, lowest-impact, most curable cancer there is.

The experience of the last two weeks and my debut into cancer-land has been, uh, interesting from my vantage point as a long term chronic babe/ sick chick/spoonie.

Some insights into my surreal existence these days...

1.) It is fascinating, FASCINATING, having an illness that is not socially taboo. Whaaaat? I can talk about this like it's no big thang? Yes, yes, I can. No one gets squeamish or quickly changes the topic. Wow.

2.) But of course, people do seem to think it is at least kind of a big thing, and something that they ought to acknowledge when they see or talk to me. "So sorry to hear....!" "But you're so...." "It's just not..." Dude. Why have you never given a damn that I have spent the last 15 years of my life battling illness after illness after illness, all of which greatly affected my ability to function, and yet now that I have a growth that doesn't impact my quality of life at all I am now worthy of sympathy?

3.) Well of course because cancer can kill people. And to that I say, oh honey, my mortality is not news. It's the only thing on this planet that is not news. I will die and so you will you. And yet...cancer...! [Insert sucking in of breath, tears, clucking, soft nodding, blah blah etc etc...] The association with death gets the reaction, whereas I cannot pay people to give a damn about chronic pain.

4.) To wit: I will get to spend my birthday with my husband this year because that's the day my surgery is, and when you tell your boss "I have to drive my wife to surgery to get her cancer removed" you get the day off. You never get the day off because your wife has a chronic pain disorder. Just sayin'.

5.) Back to 3 - cancer can kill people. Yes, it can, but basal skin cell carcinoma pretty much never does. It seems almost unfair to call it cancer. Many people in my life have had what I am now referring to as "real cancer." Ya know, chemo, surgical removal of body parts, surgical mending of said body, weight loss, hair loss, radiation, deep suffering? Basal skin cell carcinoma is like being at the cancer dinner and sitting at the kids table. It's the junior club. Cancer-lite. Diet cancer. This is not real fuckin' cancer, people. If you wish to care for me in my time of suffering, then by all means direct your care to my many other debilitating issues.

6.) Oddly enough, cancer, for me, is the easiest health problem I have ever dealt with. (Back to 5 - of course this isn't "real cancer," but it is my experience of what is technically cancer.) Get this - they just cut the cancer off and it's gone! AMAZEBALLS. I wish one day of outpatient surgery was all it took to get rid of v pain, SI joint pain, an effed-up left shoulder, bum wrists, a non-functioning left knee, acne, period cramps, infertility, scoliosis, migraines....

7.) Despite the fact that this is the easiest health problem to deal with, it's the one for which there is the most support! WTF! So easy to get the names of good surgeons, hear about other people's experiences, learn what to expect, etc etc etc. Where was all this support when I really needed it???? Eyeballs popping out with frustration!!!!

8.) "But you take such good care of yourself!" I KNOW, DAMMIT. A lifetime of daily sunblock, hat wearing, and sitting in the shade did not prevent me from getting stupid skin cancer young. Neither did eating my vegetables, exercising, meditating, praying, or trying to live a good upstanding life. Because as I learn and constantly re-learn, life on Planet Earth has nothing to do with fairness. Not a thing. Zip, zero, zilch. Fairness is a stupid concept we teach children, who then think it should be there to support them when times get rough, but surprise, it never does. We need to amend "Life isn't fair," and add on "nor does fairness have anything to do with anything, really." So let it go. 

9.) I suppose because the carcinoma is on my face, I was referred to a surgeon whose practice also involves a lot of elective cosmetic work. (Or maybe not. It seems like many Mohs surgeons also practice cosmetic dermatology.) Understandable. Hilariously enough though, this means I get the same treatment as all the other posh people at the doctor for their expensive elective work. The waiting room is really nice and has high-quality chocolate and beverages out. The receptionist gave me a "welcome gift" for becoming a new patient. Upon receiving the beribboned box, I snarkily replied "Who knew cancer would be so much fun!" By the look on her face, she was not used to getting that comment. (In case you were wondering, my gift was a water bottle, chapstick with sunscreen, and hand sanitizer - all branded of course - packed in shreds of silvery mylar stuff.)

10.) Silver lining (in addition to getting to spend b-day with hubby) - insurance is paying to take this ugly thing off my face. Sweet! I've lived with it for years, thinking it was a scar that hadn't healed properly, and was super-irritated that it was so unsightly. But it's not a scar! It's cancer! So having cancer is like getting insurance to pay for elective cosmetic surgery to make me prettier! Cancer = I'm prettier! I can't believe I'm writing that. 

Can you see why my world is feeling so surreal these days?

Ugh.

Anyway. Yes. I never would have thought as a child that in adulthood cancer would be the easy thing to deal with, or that it would make me prettier, or that other health issues would actually be the hard ones, and yet that is my weird, weird, reality these days.

And if anyone tries to brush off your complaints regarding v pain, you can now tell them "This is harder than cancer!" Because, for one person at least, that is true.

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PS Did this post get your brain gears crankin'?

Feel free to start a conversation below (it's okay, you can be anonymous)!

College Students Researching V Pain

I had the pleasure this past Friday of giving a Skype presentation to a group of five rising sophomores studying vulvodynia and immunology as part of a summer research project. I met their professor a few weeks ago at my college reunion, and she asked me to talk to them so they could have a better understanding of what v pain patients go through.

I sketched out my journey for them, and then led a discussion on how societal values shape scientific research - i.e, helping them understand WHY it was so hard for me to find care. Within the lab scientists work hard to eliminate bias, but what question they are researching is subject to the blindspots and prejudices of the society in which that scientist operates.

I hope that they took away an understanding not only of the importance of the research they are doing and ideas for how they can support and create change outside the lab, but also a greater sense of the context in which they practice science. It was fun to hear their comments and questions, to see the gears whirring as they took it all in.

I have to say it was SO AWESOME. If you told me ten years ago that I would one day talk about my v pain in public to strangers, I would have been have been mortified. But - with a mere eleven years of processing my shame and baggage around the topic under my belt - it was great. V pain is connected to so many topics I already love talking about: the role of women in society, sex, feminism, social change, justice, class, race, power structures, history, relationships, emotions, spirituality, personal growth...the list goes on. I am by nature a very holistic, big picture thinker, someone who loves to see how everything is connected, and v pain lends itself to that ability very nicely.

This was the first time I have ever (1.) done a presentation on v pain and (2.) told complete strangers about my experience of v pain in a conversation rather than via writing (totally different not hiding behind the keyboard!) and (3.) given a presentation of any kind in an college setting, as a non-student.

It was a big step for me. This Skype presentation helped me see how much progress I've made in learning how to communicate about v pain, and it was so validating to see that others could benefit from my knowledge. Sure, I stumbled and was less than articulate at times, but isn't there a saying about "Speak the truth, even if your voice shakes?"

So the moral of the story is: 

Even if you are deeply troubled by your v pain and have a tough time talking about it today, that doesn't mean that you won't someday shake off those shame-shackles and be completely capable of telling your story from a place of power and pride.

You are amazing, wherever you are on your journey. Remember that!

* * * PS * * *

Did you know that you can comment anonymously?

Yup! Feel free to start a conversation with complete privacy. ;)

“I know someone who had that."

For many years after my diagnosis, I didn't speak of my v pain to anyone other than a few close friends and my sweetheart. But when I started teaching yoga a few years ago, I wanted to be honest about what drew me to the practice. In the yoga world people often chit-chat about what brought them to the mat, and while I didn't want to be detailed in my honesty, I didn't want to lie, either.

At first I would say that I came to yoga because of a variety of chronic illnesses, but apparently that was too vague as people would always press for more. If I mentioned the pain disorder, the person conversing with me would then say "Oh, fibromyalgia?" (always fibromyalgia) at which point I would reply that no, it wasn't. Pause. Unwilling to say "vulvar pain" or explain the term "vulvodynia," I would simply say "I have a pelvic pain disorder."

At the mention of the word "pelvic" men would get uncomfortable and quickly remove themselves from the conversation, and sometimes that would happen with women too. But often - if it was a woman - she would lower her voice and say:

"I know someone who had that."

Had WHAT? Do you recall that the pelvis includes many different organs and body parts, any of which could experience pain? Some would leave the conversation at that, but often she'd talk about how horrible it had been for this person she knew. I'd try to look sympathetic and nod, having no idea if we were talking about endometriosis, interstitial cystitis, lichen sclerosis, vulvodynia, or something I'd never heard of. 

I can't pin this peculiarity to the yoga world either, as over the years these conversations took place in other contexts as well.

In all of these these situations I clearly had boundaries about how detailed I was willing to be about my health history, so I have never thought it fair to call anyone out and actually ask them what they meant. But it never ceases to amaze me how many women out there will go on about something - furtively - when it is not clear if both people are discussing the same thing.

Like last week's post, these veiled conversations have highlighted the fact that we won't make any progress without first learning how to communicate about the pelvis.

The other odd thing is that the phrase is always the same - I know someone who had that. Let's break it apart, shall we?

1.) Part One: "I know someone..." No one has ever admitted me to me right then and there that they themselves struggle with chronic pelvic pain. The closest I've gotten to that is a woman who said she would like to meet with me to talk more about this topic - we did meet, and in that safe space she did say that she had been having some struggles and asked me about my experience.

I'm not sure if women are simply more willing to discuss something sensitive with the safety of distance, while women struggling with these health issues themselves remain silent. Or perhaps "I know someone" sometimes means "I know someone - me?" I think usually the situation is the former, but I have sometimes wondered.

2.) Part Two: "...who had..."  For some reason, this person my conversation partner knows is apparently beyond her pelvic pain - it's in the past. Again, is it because sensitive topics are easier to discuss with distance, not only in terms of who it is happening to, but at what point in time? 

Statistically, it seems very unlikely to me that ONLY women who know women who had "that" in the past should ever meet me, and never the women suffering themselves, or the friends of women suffering currently.

Or is that some of these sufferers are still struggling, but its just easier for the friend to communicate about if she pretends its in the past? Maybe my conversation partners don't want to stigmatize their friends, even anonymously, by advertising her "broken" lady parts? Or is that the friend heard about it in the past and is assuming the sufferer has recovered, when in fact perhaps the sufferer has just not talked about it for a while? Given how persistent many pelvic pain disorders are, and the lack of good treatment options for many of them, I find it hard to believe that 100% of the cases women tell me about are neatly and tidily taken care of and in the past permanently.

3.) Part Three: "...that." Ah yes, "that." Which again means what??? When it comes to pelvic pain, intelligent and otherwise articulate women are reduced to communicating via pronouns without bothering to specify what that pronoun is referring to. 

No one has ever said to me "I know someone who is struggling with a pelvic pain disorder as well." No, no, this person always had "that" as if "pelvic" as an adjective only described one body part, as opposed to a region of the body with many different parts and functions contained within it.

* * *

These conversations have been very educational, in that I have learned women do not have the tools to talk articulately about issues of the pelvis.

Also frustrating, in that they don't really come to anything. The woman I am speaking with generally tells me quickly how horrible it was for her friend, warmly wishes me good luck, and then runs for the door. 

As I write this, I think I need to re-think my policy of responding with sympathetic nods. How can I shift the conversation while still keeping my conversation partner feeling safe enough to continue the discussion?

"Oh, I'm sorry to hear that someone you know is suffering - we may not have the same issue, however, as there are dozens of pelvic pain disorders affecting all of the different systems in the pelvis. I'm always looking for resources for my own health as well as to refer to others, so I would love to get your contact information - would you be comfortable asking your friend if she would be willing to talk to me and exchange resources?"

or perhaps

"You know, it's funny, I get that response a lot even though there are dozens of different pelvic pain disorders. Many women suffer from one or more of them, so I am always looking for more resources for myself and others - do you think your friend would be willing to talk with me? Maybe she and I can help each other out."

The next time this situation arises I will try and remember to use one of these responses instead. It would be great to be able to build on these points of contact - get a referral, meet someone new, whatever. Maybe by providing a woman with an experience of an articulate but still discreet and respectful conversation, she will have an easier time talking about pelvic pain in the future.

I'll let you know how it goes. In the meanwhile, does this happen to anyone else?

Say It

Victory! This past weekend I was totally validated for my Facebook post of last August, in which I announced the birth of this blog and thus the existence of my own history of v pain to what felt like an uncomfortably large sum of people.

At the time it made me feel soooo vulnerable, but I now have evidence that putting myself in that super-uncomfortable position paid off.

I was at my 10 year college reunion this past weekend, and I ran into an old friend of mine. He told me that he has been trying to refer a friend to this blog (which he heard about on Facebook, wink wink), but she's so upset about her v pain that she hasn't been able to bring herself to check us out. 

Yes, it sucks that she is struggling, but on the plus side she knows where to find us if she ever wants to reach out, AND how amazing is it that she has a friend who is has already heard of v pain, is comfortable talking about it, and is cheering her quest to get better (she has found a PT who is helping!)?

The fact that my Facebook post, as vulnerable as it made me feel, could facilitate someone I have never met having a supportive friend walk beside her during a miserable time made me feel so good. (It does help that Josh is freakin' amazing already.)

At the reunion I also got a chance to chat with a biology professor conducting research on vulvodynia and the immune system with funding from the NVA (again, I was referred to her by someone who had seen my Facebook post.) She said that her students are always nervous when they start to work in her lab, but after a while they would get the hang of it: terms like "vulvodynia" and "vulvar pain" are soon no big deal.

These two experiences reminded me of the (freeing) power of communication and the  (oppressive) power of silence.

Our future potential progress on finding treatment and care for v pain depends completely on our ability to communicate about it.

Staying silent is understandable. We don't have pre-existing ways of discussing this topic comfortably and we have major cultural baggage around it and it's many cousins. But if we stay silent, we will never build the communication structures we need and life will continue to suck for us and millions of other women. 

So...

I challenge you to push your boundaries and communicate about v pain in some way that is new to you. If it's too scary to think of telling someone else about v pain, start by communicating with yourself. Here are some ideas to get you started:

• Draw a picture.
• Make a self-portrait. 
• Write a poem.
• Make a movie poster for a documentary about v pain that could happen some day.
• Make a list of all the women you know who have been affected by v pain.
• Write about what you wish your medical care experience was like.
• You could even post about it on Facebook ;)

Over time you can build up to talking with other people. If you are not ready to tell them your personal story, you can always share information about v pain itself - how it is an important women's health topic that affects many and is being brushed under the rug, etc.

And if you still think all of that is too scary, I ask you this: is it scarier to talk about v pain, or to live in a world where no one talks about v pain and millions of women and their loved ones suffer as a result?

I mean really...

So. Happy talking and art-making and communicating! It may seem small, but what you are doing is actually quite bad-ass. Who knows who you may help in the future...?