“Becoming comfortable in their bodies is, for our patients, the number-one, paramount issue, and if we can’t help them do that, then we can’t help them at all.”
–Dr. Bessel van der Kolk, world expert on the healing of trauma
As a survivor of infant surgery without anesthesia and/or pain control, my first two decades on the planet were a study in body revulsion. I was in runaway mode. The farther I could get from my own skin, the better. Finding comfort in my body was nearly impossible. I had no notion that the body was a safe place in which to live.
Why did I feel this way? I had no idea. As a child, the story of my stomach surgery had been told to me by my mother; my own experience of the surgery was locked away in trauma. I was a newborn with no words. My mother told me that I never felt anything since, she assumed, I had been anesthetized. In the saving of me, I’d been brutalized and so my foundation was grounded in profound suffering. I had no words to describe the persistent and pernicious alienation I felt from myself.
I’ve tried to communicate this disjuncture in the many posts I’ve written and published since 2009 and the ways I’ve tried to sooth myself. Please do check these out. In this post, I simply want to underscore that many survivors of early invasive medical procedures have distorted relationships with their bodies, something I have learned from survivors’ comments and emails as a blogger. Many of us have sought help from alcohol, food addiction, nicotine, drugs, negative relationships, numbing careers, and dangerous activities.
If you underwent an invasive medical procedure as an infant before 1986 in America, the watershed year that Drs. Anand and Hickey published their seminal study of infant pain and the time when Jill Lawson went public about the death of her newborn son, Jeffrey, dying after a heart artery was tied off without anesthesia or pain control, then it’s possible you’ve experienced a disturbed relationship with your body. It’s likely you’ve wanted out.
In the quote that begins this post, Dr. van der Kolk refers to his findings regarding therapy for survivors of trauma (though in his book The Body Keeps the Score, he barely mentions preverbal trauma.) He claims that psychotherapy without a component that addresses or involves the body is useless. Our bodies are the repositories or storehouses of the trauma. During trauma, the verbal part of our brain goes offline so-to-speak. Emotions and physical sensations, such as smell, taste, touch, sounds, visual imagery, are the keepers of the story so that therapy must involve unlocking these stories locked down in our bodies.
If you are a survivor of infant surgery or invasive medical procedures without anesthesia or pain control, undoubtedly finding comfort in your body has been a challenge. Maybe some of you are just realizing the source of your alienation from yourself. This step is so important. In any case, be kind to yourself as you realize the distance you’ve traveled from you and the length of the journey to come in returning home. If it’s any comfort, know that I have traveled this road and the journey is possible. I have learned to be still and be nourished. I have learned to self-soothe–not perfectly but oh so much better.
While we may not ever learn to be completely at home in ourselves, we can snuggle up closer than we ever imagined possible. In order to do this, however, we have to begin our journey in the light of the truth of what happened to us. We must claim the source of that profound alienation, though it may be scary, for it’s the first step on the way back.
*I wrote a draft of this last post in February of 2019, just before I was diagnosed with bladder cancer in early March, 2019. I am now thankfully in remission. More on this will follow.
Welcome back to your blog, Wendy! It is so good that you feel ready and able to write and advocate again for those of us whose lives have been disrupted by the crudities of the way infant surgery and hospitalization were done in yesteryear! You have lost none of your writing finesse, and it’s clear the fire still burns.
With all your family, friends and other readers I trust and pray that your continued treatment and recovery will remain good news for us all, and for many years too!
In the Facebook “Pyloric Stenosis Support Group”, some 20 members have reported on their struggles with symptoms of trauma that (like yours and mine) can only be traced back to their pre-verbal memory. I have logged 1300+ of the non-parent members of this Group, most of them being post-1985 PS “survivors”. While 20 people reporting on their trauma may in itself be a small number, it is significant, as the Facebook PS groups attract only a tiny percentage of people with a PS-related story, as deeply inner experiences are not usually shared online if at all, and as PS is far from the only condition that was and is typically managed by surgery.
So here’s to your continued health, energy and blogging!
Wow, what a thrill to log on to my computer today and find your post, Fred! I must say it was also thrilling to publish my post yesterday. Thank you for affirming “my writing finesse.” We’ll see if it holds up when I publish my next and recently written piece:) I love that you provide some numbers– rough stats, if you will–representing those struggling with symptoms of early trauma. Yes, 20 is a small number but it is by no means conclusive. Tip of the iceberg, seems to me. As you say, people rarely write online of “deeply inner experiences,” the FB group only attracts a small percentage of PS folks, and many other infant surgeries and invasive medical experiences are not taken into account: Such strong points! Thank you for cheering me on and for our continued work on this issue. So grateful to be swimming in the sea with you once again!
Such a poignant recollection of the trauma you have endured. Thanks for sharing.
I just found your comment on my dashboard for the blog. Sorry it took so long to respond. I’m just now getting back to blogging fitness, shall we say. Glad you appreciated my post. So happy that you read it. Now you know something about why I was so careless as a teen-ager, driving crazily for one. Good to be back in touch.
Hi Wendy! Welcome back. While I am delighted to see you here again, I am sorry to learn of the reason for your absence though glad to hear that you are in remission. You write of the dynamics of early life medical trauma so vividly it’s as if you are telling my specific story. I hope someday soon that medical trauma will finally be added to the ACE survey and that van der Kolk and others will continue to waken up to the reality of infant surgery – particularly before anesthesia but also even with it – as a major adverse childhood experience and that our body issues are not at all the same as “normal” body image issues whatever normal might be.
Hi Wendy! Great to have you back, though certainly sorry to hear of the reasons for you absence. I’m glad to know why you weren’t hear and to know that you are in remission.
I actually wrote a message here a week or so back but somehow I must have missed something for it to post. Either way, the quote from van der Kolk is spot on and really sums it all up beautifully. Then you description from your perspective on how early life trauma and surgery impacts our ability to be in touch with our bodies later in life is so powerfully descriptive of my own experiences in ways I have tried to find the words to convey in my own way. It is the understatement of a lifetime to say that I have struggled with the ability to be safe in my own body, much less find comfort in it. In so many ways, I am still that infant trying to deal with the pain of a broken body and the pain of the interventions used to treat it. I still seek the ability to trust my body and to trust people because everything triggers the primal memory of being cut open over and over.
“The light of the truth of what happened” What a profound agenda, need, goal and purpose for us! I crave the validity to safely have the truth of what happened be known by me but also as importantly by others. I don’t seek to be seen as a victim, but I do want and need people to acknowledge that I went through hell and that this is not a judgement about who I am as a person.
I look fowaard to reengaging with you and others here.
Wow, Bill, what an awesome comment. Thank you! Sorry I missed it initially. Actually, both comments went into spam, somehow not recognizing you, but now that I’m starting to get more regular about peeking into the dashboard of the blog to make sure things are running smoothly, I’m sure I’ll catch the problems earlier. Yes, staying safe in our bodies is quite a different thing than finding comfort, isn’t it! But gosh, the comfort is worth a shot, isn’t it? I know that I’ve gotten better at it, but the comfort part is still a challenge, especially what with getting chemo instilled into my bladder monthly. Very uncomfortable! I love what you said about not being seen as a victim but wanting the truth of what happened to be known. Absolutely! I certainly hope that my postings don’t come off as pleas for pity. I’m trying in my way to empower myself and others. My mom always played up her suffering more than mine, stating that while I was knocked out and therefore, don’t remember a thing, she had to deal with all the problems that my surgery presented. Well, understanding my suffering has been key in developing empathy for myself, something I lacked most all my life. Compassion. Understanding. These are saving me and my relationships with others. As I reread your comment, I’m wondering how you’ve gone about letting those close to you know what you actually went through. And if you have, what type of impact on your relationship has that had? So glad to be writing about this very important issue once again. You are so seminal a part of the conversation. Talk soon. Hope to be posting at first once-a-month, then more. Will be posting this week. Stay tuned.