1.16.2013

living again, in the company of pain




When I first started writing about my struggle with vaginal pain, I mentioned that it felt like one of my greatest fears was materializing: that I am stuck with this unprovoked pain forever. Seven months later, the pain and inflammation persists. So yes, for now I am living in tandem with one of my greatest fears. Some days, or hours, it still feels as awful as it sounds. 

And yet. Ever since I hit a new emotional low-point this past November, something very subtle began shifting. In the briefest of moments, I've started to palpate the presence of a gift tucked somewhere inside this painful fiasco. (That is to say, when I'm not trying to annihilate the shit out of the pain.)

A couple months ago, five months into this mess of physical pain, around Thanksgiving, I was bumping up against the darkest, grizzliest despair I've ever experienced, the kind that made me persistently think I didn't want to live anymore, if this is what my life was going to look and feel like. When I started this blog, I made a commitment to myself that I wouldn't mince words. So yes, a large part of me wanted to die.

It turns out that this is not an unusual feeling for those who struggle with persistent vulvo-vaginal pain, which I discovered when I finally dared to take a peek at Naomi Wolf's recent book, Vagina: A New Biography. I still have a hard time with most of the book because it requires me to read about women with healthy, happy vaginas, and all the things they can do with them. It makes me angry and jealous. But thankfully, for those of us with hurting vaginas, Wolf includes a chapter called "The Traumatized Vagina". 

There's even a section called "Vulvodynia and Existential Despair"! In it, Wolf interviews Nancy Fish, a therapist who works with patients in gynecologist Deborah Coady's practice in New York City. Wolf claims that Coady's is the "foremost vulvodynia practice in the United States". Fish has also suffered from vaginal pain.

Fish says that all of the women she sees are depressed. "Most of my patients have had suicidal ideation." …"Any time there is any kind of problem in the vulvovaginal region, it affects your whole sense of self. A lot of women feel crazy for feeling that their whole sense of self is involved with the vagina, but I tell them they are not. Having pain or discomfort in that part of your body is not like having pain in another part of your body." 

This excerpt, in which Wolf continues to question Fish, resonated deeply in me: 

"What does it feel like for women to never be able to use their vaginas in a healthy way?" "They don't feel they are whole." "In a different way than an amputee?" I kept restating the question because I wanted to be sure I was isolating 'vaginal grief' from general physical grief. "Yes", she affirmed. "While I was going through my journey with vulvodynia, I also had a lateral mastectomy. That was a piece of cake compared to this." 

Wow. There is something profoundly validating to hear that I'm not the only person for whom vaginal pain has turned completely upside down and shaken all the remaining happy bits out of me.

Having struggled with depression for most of my adulthood, I've always promised those closest to me, that should I ever feel in true danger to myself, I would seek help. So when this recent despair started occupying larger and larger chunks of psychological real estate, I proved to myself that I care enough to do what it takes to stay safe. 

For the first time in my life I began to research residential treatment. Living alone when you're going through something like this takes an extra dose of stamina. Ultimately I decided to stay put, and instead to increase my once weekly therapy appointments with a therapist who specializes in trauma, to three times per week. This wise move, among others, seemed to help stop the emotional bleeding, so that I began to feel safer and better contained.

Since that time I've continued to refine my resources. I now feel like I have a solid team of support between my medical providers (mainstream and alternative), therapist, and a lovely mind-body healing coach. So while the physical pain persists, I FINALLY feel like I'm swimming in the right healing pool. Amazing how a short little word like "trauma" can be such a profound game-changer. I'm learning things about myself and my life that are blowing my mind. Since I'm acutely self-aware, I arrogantly thought I knew pretty much what there was to know about myself. But, the things I'm learning now make me feel like a kindergartner in the school of personal-growth. It's kind of astounding. And dare I say, even a little exciting. 

Since the beginning of my ordeal seven months ago, people have called me brave for fighting so hard, despite the pain and depression. It's never felt like bravery to me. Just desperation to get well. If you felt like the very center of your being was in constant pain, you'd probably be searching just as hard.

But here's what I do see as brave: In the past couple months, since hitting my newest rock bottom, I've committed to having faith that I can heal. This is one of the bravest decisions I've ever made. It requires hourly, daily, and sometimes minute-by-minute effort to resist the siren call of despair. In the circles of vagina pain, this is VERY counter-cultural thinking. 

There's a whole lot of evidence to support the idea that I have this thing called "vulvodynia" and it must be managed imperfectly forever, but not healed. There's also a whole lot of evidence trying to seduce me into believing that I could, in fact, end up as one of those women who lives with this pain the rest of my life. And the longer the pain persists, the more tempting it is to believe that gloomy prognosis. Also I have a crappy track record of cultivating hope. It's really scary for me, because I've tried hope many times, only to be crestfallen. 

The irony about learning how to have faith and hope for a better future, is that it requires us to accept and be present to what is here right now. Damn you, zen-y acceptance. So my biggest work right now is learning how to live again, with the pain in hand. Fuck, is it hard.

If you see me riding my manual scooter down Centre Street (the most comfortable form of transit since it doesn't require me to sit on my pelvic nerves) or sitting and laughing on a couch at a party, please know that it takes great courage and resolve for me to be doing these things. Please know that I'm in the midst of what is proving to be a long excavation, in hopes of unearthing the potential gifts that whisper to me from a place I can't even locate yet. Send me your love, will you? And I'll send it right back to you, because I'm certainly not the only one out there sifting and sorting and daring, trying to find my way out of pain into light. 

11 comments:

  1. Wondering if you've tried anti-inflammatory supplements. There are some listed here: http://www.liveinthenow.com/article/10-anti-inflammatory-supplements-that-work

    I sure hope it gets better for you! Look forward to reading your blog entries.

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    Replies
    1. Hi Donna,

      Thanks for reading, for your support, and for the link! Yes, I've tried some, though not all of these things. Will keep on trying!

      Love,
      Kyle

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  2. Kyle- I certainly wish you hope with your journey.

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  3. Thank you very much!

    Love,
    Kyle

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  4. Hi Kyle,

    I am Sheila's partner; she shared your story with me. May I ask, are you in pain always?

    Love the line, while referring to being brave: "Just desperation to get well."

    You can friend on me on FB as well. I am Tee Dubois in Sheila's friend list. I am the california raisin.

    Stay well.

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    Replies
    1. Hi Tee! Thanks for your note and for taking the time to read my blog. Yes, the pain / discomfort is pretty much all the time, with varying degrees of intensity. I'll go friend you :)! Take care. Love, Kyle

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  5. Dear dear Kyle...I'm so sorry its been so hard. And relieved to hear that adding additional support has helped. I find that, as a person who has experiences chronic pain over many years, my brain is amazed at the level of support that can be needed to counteract the effect of the pain. And so you are, as ever , a role model for taking the necessary steps to reclaim your spirit.i You are living a n amazing life with this experience, and I cheer your choice to consider the possibility that you are healing,, and that this pain will not be your permanent companion.


    Only if you are wanting more ideas...
    I wonder if the health journeys website has any specific visualizations for vulvodynia. I have used their visualization for pain and found that over a period of a couple of weeks it helps to calm my nervous system. i also regularly use the the Trauma visualization series, and some others). No idea if this might be a helpful practice for you..for me its a gift to lie down in the most comfortable position i can manage (lots of pillow props) and listen and sense the shift from tension to a kind of softening. Sometimes as I listen I nap, and awaken feeling rested.

    Love to you from down the hill,
    Marilyn

    ReplyDelete
  6. Dear dear Kyle...I'm so sorry its been so hard. And relieved to hear that adding additional support has helped. I find that, as a person who has experiences chronic pain over many years, my brain is amazed at the level of support that can be needed to counteract the effect of the pain. And so you are, as ever , a role model for taking the necessary steps to reclaim your spirit.i You are living a n amazing life with this experience, and I cheer your choice to consider the possibility that you are healing,, and that this pain will not be your permanent companion.


    Only if you are wanting more ideas...
    I wonder if the health journeys website has any specific visualizations for vulvodynia. I have used their visualization for pain and found that over a period of a couple of weeks it helps to calm my nervous system. i also regularly use the the Trauma visualization series, and some others). No idea if this might be a helpful practice for you..for me its a gift to lie down in the most comfortable position i can manage (lots of pillow props) and listen and sense the shift from tension to a kind of softening. Sometimes as I listen I nap, and awaken feeling rested.

    Love to you from down the hill,
    Marilyn

    ReplyDelete
    Replies
    1. Marilyn!

      Thank you so much for your note and thoughts and ideas. I do know you understand so much of this...

      I think I bought both those visualizations that you're referring to, many months ago but never gave them a good shot. So it's good to hear you say that it can take a couple weeks to notice a benefit. I think I'll try them again.

      I have started a daily practice of doing a body scan relaxation thing, just learning how to notice all the sensations in my body.

      It's a journey indeed.

      Much love to you from up the hill :),
      Kyle

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  7. So beautifully written with such emotional intensity, and such profoundly beautiful candor. You inspire me on several levels.

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  8. Thank you so much for the kind words!

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