11.03.2012

coming to terms with trauma, thirty-nine years later

A photoshopped image of me, as a toddler, with me, as a grown-up (Thanks JLP...)


I'm not planning a topical bait and switch, by turning Laughing in Traffic into the Vagina Mono(b)logues. But for now, my vagina pain situation is my most consuming, life-thwarting roadblock. I'm already bored with this annoying traffic metaphor but if we must: I feel like I'm trapped in stand-still traffic, behind a diesel truck, in a heat wave, with no air conditioning, a stereo stuck on AM static, and a backseat full of wailing babies. A whole slew of 'em, more than would ever possibly fit in one backseat. Like nine screaming babies. With very dirty diapers.


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I share the following story more for my-little-Kyle-self than for anyone else. It's one way to let her know that I'm finally trying to acknowledge what she went through, after a lifetime of dismissing her terrifying misadventures in the world of pediatric urology. The story is about a series of childhood experiences that, until March 2012, I barely thought mattered. I was so wrong.  


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Not long after I was born, I was catheterized for a suspected urinary tract infection (UTI). That post-birth infection was the first of what turned into a long chain of unrelenting UTI's, until I was three and a half years old when I had surgery to correct the structural abnormality in my urethra. From that first infection at two months old until six months post-surgery, my little body was plied with antibiotics, twice daily. All told, I was on antibiotics for the first four years of my life. It's probably not a coincidence that, to this day, I live within the confines of maddeningly screwy immune, digestive, and nervous systems. 

Incomplete medical records reveal that I was catheterized at least six, and possibly as many as twelve times in the first two and a half years of life, before the age of toilet training, when they could finally snag some clean-catch specimens, which my mom remembers bringing to the doctor " all the time". In addition to the general-anesthesia surgery, I was subjected to multiple painful diagnostic procedures (ultrasounds with catheter etc.). 

I'm around 8 months old here - at this point I'd had multiple catheterizations. 


Adding insult to injury, I was left without the comfort of a familiar face during all of these procedures because my mom was not allowed to be with me. From what I've recently learned, catheterizing a baby requires her to be held down, often by multiple people, and it sometimes takes repeat tries to insert the catheter into such a tiny, painful place in the middle of the vulva. My research also reveals that parents who assist in holding down a child are often vicariously traumatized by the baby's degree of distress. So I guess nurses and doctors separated me from my mom to protect her. WHAT. ABOUT. THE. BABY? My mom was also prohibited from staying overnight with me in the hospital after my surgery. So a three and a half year old, with an indwelling catheter, goes it alone for a few nights. (This was almost forty years ago when hospital policies were more inhumane.)  


This is around the time I had surgery


The surgery resolved the unremitting infections. But when I was twelve I was catheterized again for what must have been another infection. My mom, who wasn't in the room with me at the time, shudders now when she recalls hearing me "let out a scream a mother would never forget". Yet, I don't remember a thing. NOTHING. Not at 12, not at 3, and certainly not any of those many catheterizations in my first couple years of life. 

This total lack of memory is one reason why it's been so easy for me to dismiss this early history as insignificant, despite the fact that I've had lifelong vaginal pain, and that my health fell apart in my early twenties and I've spent the last seventeen years trying to get well from a long list of maladies, with limited success and much sacrifice. And that I've always felt afraid to be in my body.


This is around the time when I was catheterized again.


For a smart girl, the degree to which I've blocked out this childhood experience is actually astounding. "Blocked out" doesn't really describe it. For most of my life, when I thought about this medical history (which was hardly ever), I'd be downright condescending and nasty to myself about the experiences, saying things like "Who cares, you didn't have cancer or lose a limb. This was not a big deal. Babies don't remember anything. All babies gets colds and infections and shit." Crazy mean self-talk. Red flag?

I've been to hordes of health care providers (traditional and alternative) over the years, for my long list of physical issues. Sometimes I'd mention the vaginal pain in the list of complaints, sometimes not. But even when I did, I usually put it at the very bottom of the list of current complaints. On more than one occasion, I remember astute providers probing further, discovering the childhood history that I barely thought worth mentioning. And I remember one particularly insightful provider saying to me something like this, "You know...maybe that history and your vaginal pain should be at the top of your list. You went through something really awful. It might just be ground zero for all your other health problems." But my blocks to dealing with this were profound, and I just wasn't interested in going there. 

Until this past March, when I was interviewed by a doctor in Portland, Maine who is documenting the impact of childhood invasive medical procedures on adult women. 

This doctor is one of the warmest, most soothing people I've ever talked to. After listening carefully to my history, the severity and extent of which surpassed the other women she'd interviewed, she said to me: "Kyle, I am so so sorry for what you went through. Even though their goal was to help you, what you experienced in those most formative years was repetitive genital medical trauma." 

Those four words made me feel light-headed and fuzzy-brained, and it felt like somewhere inside of me, time stopped. Some other part of my brain heard the doctor continue, "No child is ever supposed to be penetrated. For any reason. And the things they did to you were incredibly invasive. Your first experience of your genitals was supposed to be pleasurable, even peeing feels good to most kids, but yours was of extreme pain, from the infections themselves and the countless probing procedures. The intent was good, but a child could experience all of it very similarly to sexual abuse…" I continued to feel light-headed and the tears started dripping out of my eyes. 

In that life-changing moment, many of my deepest struggles started to make sense. The fact that I daydream about being able to be alive but without a body; that my body moves from one physical struggle to another, without respite; that I've wrestled with long-term depression; that I'm incredibly hyper-vigilant; that my need for control is profound; that I'm sensitive to just about everything external that can penetrate me, whether it's sound, light, foods, medicine, chemicals; that I hate physical pain more than anything in the world; and that multiple therapists over the years had claimed that aspects of me suggest profound early trauma. These professional conclusions always left me dubious, and I'd deny any Capital T trauma. 

The doctor explained to me that historically, babies were thought to have no memory or feelings about painful experiences. But current research is starting to show the opposite. Infancy, when the nervous system is still developing, and before a child is able to verbalize and process her fears or regulate her emotions, is one of the most damaging times of life to experience trauma. Or, as another clinician explained to me, the primary task of the first year of life is to feel safe in this strange, external world. 

So, thirty-nine years later, I'm finally, but still hesitantly, willing to entertain the idea that what happened so long ago, and has never been addressed or healed, might just matter. A lot. And yet, as I write this story, I feel like I'm describing something that happened to someone else, not me. 

A bodyworker said to me recently "The hardest but most effective healing work we can do is to reclaim the angriest, most terrified parts of ourselves. The parts we find most intolerable and unlovable. The parts we want to destroy. But it's imperative to let those parts feel heard and integrated in order to feel whole and healthy." I'd say that I probably have one ostracized, enraged, petrified, "get the fuck off of me" little girl inside of me. 

And as I learn more about trauma, I'm starting to understand that even if my mind can repress the memories, my body remembers everything. The current trauma paradigm suggests that the most effective healing happens, not by reliving old trauma, but by finding ways to communicate with, and release, the body's holding of the trauma. 

I recently heard an incredible story about the body remembering what the mind cannot. In her early thirties, a woman with long-term vaginal pain, started having dreams that suggested something invasive happened to her as an child, but she wasn't aware of anything. So she asked her mom. It turned out that, yes, as an INFANT, she'd had the same surgery as me! Nearly thirty years later, her infant self insisted on finally being heard. That blows my mind.

So, to my plump, little eight-month old Kyle with the taped-bows-on-your-head; to my pig-tailed, three year old Kyle who lovingly (and maybe a little possessively) called your three older brothers "my boys"; and to my braces-wearing, twelve year old Kyle who worked so hard to be a good girl: I am really sorry. I am sorry for shoving you so far into the recesses of my mind and dismissing your experiences and emotions so profoundly for the last thirty-nine years, that I wonder if you had no choice but to seep and squeeze into every spare nook and cranny in my body, making it ill and fragile in the process.

A few months after being interviewed by the doctor, my lifelong low-grade, don't-bother-it-and-it-won't-bother-me vaginal pain skyrocketed into this current, acute four-month flare, which is unlike anything I've ever experienced. Coincidence or not? I'll never know. But during the interview, in that moment when I felt lightheaded and time stopped, I wonder if my young, little parts, heard someone finally acknowledge the terror I experienced so many years ago, a validation I'd been entirely unable to give myself. But perhaps the doctor, someone outside of myself, finally heard the desperate pounding on the doors of all the secret places I stored these baby parts.  

I have the capacity to try to shove these traumatized parts back inside again. I've certainly demonstrated my prowess. UNLESS they make the pain so loud and so constant and so life-blocking that I have no choice but to listen. They now have my full attention. 

The thirty-nine year old me struggles to imagine, and still tries to deny, how scared or abandoned or unprotected or angry I might have felt about what was being done to me and my body, without my consent, so many years ago. But I am going to do my best to soothe, not heed, all those parts that want to stop me from listening, the parts that just want to annihilate the current physical pain and shut the door again. In the last couple weeks, I've shifted my prayer from "PLEASE make the pain go away" to "PLEASE give me a brave, curious, and open heart so I can listen to what the pain might be trying to show me." It may be messy and slow in coming, but I think help is on the way, little K...



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IMPORTANT: NOT all women with vulvo-vaginal pain have a genital trauma history. Some certainly do; I'm one of them. And in my case, I do believe that acknowledging and healing that trauma is a key part of healing my physical pain but certainly not the only part. Medical interventions will be equally important. The notion that all women with this pain syndrome must have a sexual or genital trauma history is a lazy, erroneous argument that was used historically to dismiss this complicated nerve pain syndrome as psychological in origin. This sexist, institutional dismissiveness explains the dearth of research into the syndrome. Thankfully, in recent years the medical community has finally started to take this pain syndrome seriously, recognizing the havoc it wreaks in women's lives, and starting to give it the research we are due. 








19 comments:

  1. Brave words, Kyle.
    Love,
    Rick

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  2. Thank you do much for sharing this painful history and current agony. I do think you bravery and honesty is taking you on a path of profound understanding and healing. Sharing your story also can help others unr
    eavel similar histories and enlighten health care professionals who care for survivors of chronic urinary tract infections. Thank you.
    -Anna

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    1. Anna, thank you so much for your comment, and for seeing that being public about this might just reach those who care for little ones with this issue. I hadn't even really thought about that. Love, Kyle

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  3. Kyle. Thank you for sharing. Not only to help heal you but also because my daughter has had to have a catheter when she was one day old. She had UTI's since she was potty trained until the age of 5 years old. Your brave writings is more than writings to me, I am taking your experience and learning to better help my daughter. Thank you Kyle. Thank you.

    Kendra

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    1. Oh Kendra, I can't tell you how much your comment touched me. To know that my story might be of use to your sweet girl moves me deeply. Love to you and her.

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  4. Kyle,
    I'm so sorry about what you've been through. What you are doing now will be healing for yourself and many others.
    with much love,
    Edythe

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    Replies
    1. Thank you so much Edythe. I miss you! Kyle

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  5. Kyle,
    I'm so sorry about all your terrible pain and hardship and glad that you've been able to finally unearth this trauma. I hope so much that understanding what happened will help you work through the pain. You are so strong and brave to share this with the world. Only through women like you will these dark secrets come to light so that important work can be done to figure out ways to fix them and heal you and countless other women. Sending lots of love your way. xoxo Bonnie

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    1. Thank you so much Bonnie. Your note meant a lot to me. I miss you! Love, Kyle

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  6. Kyle,
    I'm so sorry about all the pain and hardship you've had to endure and glad that you've finally been able to unearth these memories. I really hope that this knowledge will help you heal. You're so strong and brave to share your story with the world. Only through shedding light on these dark secrets can the work begin to fix these problems and help heal you and countless other women. I'm sending lots of love your way. xoxo, Bonnie

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  7. it seems to take great resolve and inordinate courage at times to stay on the path of the inner journey, unless faced with pain.
    your life, your health, confounds me as i grieve with you... and yet your story brings hope, all be it at times difficult to see, that you have walked on a path few of us will know, and that through your pain you move closer to a healing none of us is familiar either.
    k2

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    1. K1 - you are the best. Thank you, and I love you!, Love, The Real k2.

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  8. Thank you, as always, for sharing, Kyle. Your story is terrible and I am so, so sad to read it. Your resilience is profound -- please keep writing and sharing. I wish I lived nearby to give you a big ass hug, but until then:

    HUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUG

    And one more for the road: HUG.
    xo Lilli

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    Replies
    1. Oh, thank you my dear Lilli. I look forward to the day when we finally meet in person, and I get to give and receive that hug. Love to you, Kyle

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  9. Thank you, as always, for sharing, Kyle. Your story is terrible and I am so, so sad to read it. Your resilience is profound -- please keep writing and sharing. I wish I lived nearby to give you a big ass hug, but until then:

    HUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUG

    And one more for the road: HUG.
    xo Lilli

    ReplyDelete
  10. You are so brave for facing this Kyle. I also experienced childhood sexual trauma that I have no memory of and I know how easy it is to dismiss it as no big deal (I did for 17 years after I found out about my abuse) - and how much convincing your mind takes to believe (even now sometimes for me after doing so much work on it) that it actually did effect you. It's a little crazy making when you can't remember. But you are exactly right that going into your body now and healing the effects of the trauma and your relationship with your body are the way to relieve your pain - physical and emotional. You are well on your way to healing. It always seems darkest right before the dawn. Hold on to that commitment to contentment. Sending lots of love and appreciation for your willingness to be so authentic. I'm sure these words are going to help many people. They helped me. Warm Wishes,
    Lorraine

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