Living in the Company of Chronic Pain

When I first started writing about my struggle with vaginal pain, I wrote 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 persists. I am discovering what it feels like to live in tandem with one of my greatest fears. Some days, or hours, it feels as awful as it sounds.

And yet, ever since I hit a new emotional low this past November, something very subtle began shifting. For the briefest of moments, I’ve started to palpate the presence of a gift tucked somewhere inside this pain fiasco. That is, when I’m not desperately trying to escape it.A couple months ago, five months into this mess of physical pain, around Thanksgiving, I was bumping up against the roughest despair I’ve ever experienced, the kind that persistently made me think I didn’t want to be alive anymore, if this is what my life was going to look and feel like.

Apparently this is not an unusual feeling for women who struggle with daily vulvo-vaginal pain, which I discovered when I read Naomi Wolf’s recent book, Vagina: A New Biography.  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.” 

I’ve lived with depression since I was 19. I’ve always promised those closest to me, that should I ever feel in true danger to myself, I would seek additional help. So when this recent bout of despair started occupying larger and larger swaths of my brain, I began researching residential treatment for the first time in my life.

Living alone when you’re going through something like this takes an extra dose of stamina. Ultimately I decided to stay put, and to increase my weekly therapy appointments with a trauma-specialist therapist to three times per week. This move, among others, seemed to stop the extreme emotional bleeding, so that I began to feel safer and better contained.

Since that time I’ve continued to refine my resources. I now have a solid team of support between my medical providers (mainstream and alternative), therapist, and a lovely mind-body healing coach.

The physical pain persists, but I finally feel like at least I’m in the right domain for any chance at healing. Amazing how a short little word like “trauma” can be such a game-changer. I’m learning things about myself and my life that are blowing my mind.

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.

But here’s what I do see as brave: In the past couple months, since hitting my newest bottom, I’ve committed to having faith that I can heal. It requires daily, hourly, and sometimes minute-by-minute effort to resist the siren call of despair.

In the world of vagina pain, lasting recovery is a counter-cultural concept. There’s plenty of evidence to support the idea that I have this thing called “unprovoked vulvodynia” which would need to be managed imperfectly for rest of my life, but not healed or cured. And the longer the pain persists, the easier it is to buy into that gloomy prognosis.

The irony about learning how to have faith and hope for a better future, is that it requires accepting and being present in the now. So my work right now is learning how to live again, with the pain in hand, exactly as it is. Fuck, is that hard.

If you see me riding my manual scooter down Centre Street (my most comfortable form of transit since it doesn’t require me to sit on my pelvic nerves) or laughing on a couch at a party, please know that it takes great courage and resolve for me to be doing these basic things. Things I used to take for granted.

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.

11 thoughts on “Living in the Company of Chronic Pain

  1. 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.

    Like

  2. 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

    Like

  3. 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

    Like

  4. 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

    Like

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

    Like

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