Creating Safe Space for Sharing Our Stories

By: Loolwa Khazzoom, Founder, Dancing with Pain

July 23rd, 2009 • Living with Chronic PainPrint Print

In my twenties, I was always shocked and befuddled when I would feel connected with someone, share a personal story because of that sense of connection, then experience that person responding with commentary, evaluation, or some form of judgment. In those instances, I felt as if the person had stepped outside our conversation and was talking to me in some oddly detached way.  

My understanding of storytelling/sharing was that one person shared a personal experience, the other person related it to her/his own experience, and we went back and forth like that – connecting and bonding as we talked. Or if I had no point of reference to relate to what the person was saying, it meant listening and learning, maybe asking questions about what the person felt about a certain experience, to deepen my understanding.

I guess that’s kind of how I feel about my writing. I am not looking for commentary, evaluation, or judgment about my personal experiences or opinions, especially from people I don’t know. I do, however, love it when my story inspires other people to reflect on and share pieces of their own story.

Anyhow, tonight I had a weird interaction that got me thinking again about this storytelling business, especially around the matter of chronic pain and the raw, vulnerable feelings that go along with sharing our experiences: I met a woman, let’s call her Anne, who not only had chronic pain but also a very intense personal story behind it. She had terrific energy – funny, spunky, bright, stylin’, and otherwise very dynamic. We connected instantly and went out to dinner together.

Over our meal, Anne shared very personal details about the journey that led to her chronic pain, as well as other personal stories surrounding it. I found her inspiring. In addition, her opening up in such a trusting and deep way in turn made me feel eager and safe to tell her my own story, especially because she loved dance but had stopped doing it because of her pain.

So I gave her the long version (which I rarely, if ever, offer) of my story about discovering dance as a healing method — sharing the mystical, transcendental experience that proved pivotal in my journey. “It was a crack in the wall of my incessant suffering,” I shared. Before I could comment on the significance of that sacred moment for me, Anne remarked, “You had that wall of suffering until then because you were focused on the pain.”

“No,” I replied, taken aback, “the cement wall of suffering was trying to find a way to heal the pain, but not being able to find it.” “And because you were trying to find a way to heal it,” she said, “you were focused on it.” I don’t remember her exact words after that, but the gist was that somehow I had an active role in creating my experience of pain and suffering, specifically because I was doing everything in my power to heal from it.

I find it unrealistic to think that if I had somehow (if it’s even possible) ignored my pain and surrendered to the experience, I spontaneously would have healed. As a multicultural educator, I find it akin to thinking that if I just don’t talk about racism, it magically will go away, and that if I do talk about it, it will just get worse.

What’s more, Anne’s response felt indicative of the kinds of simplistic thinking and, ultimately, arrogance that I repeatedly have encountered elsewhere, especially in the world of complementary and alternative medicine. Numerous individuals feel confident that they can determine, just by hearing snippets of my story, not only why I experienced pain and/or suffering, but also what it means about me, my personality, the state of my soul, my current life, my past life, my karma, or my destiny.

Their evaluation unfailingly goes hand-in-hand with implicit blame and shame – ie, had I done/felt/said something different, I would not have endured the pain and suffering I went through. The suggestion adds insult to injury.

In this case, I am 100% sure that Anne was coming from the best of intentions. I’m positive that she wanted to share some wisdom she had found in her experience. I would have loved to hear it and learn from it, had it been delivered as her experience. Given the reality of my own experience, however, her comment as delivered felt almost cruel and left me feeling that the trust I had extended to her was misplaced.

I think we have to be careful — myself included, as I’m sure I’m guilty of this as well – not to project our own experiences, realities, beliefs, etc onto other people with chronic pain, especially if we do not know them or their story well. It’s like the old feminist discourse principle: Always speak in “I” statements, owning our own experiences and truths. Then our conversations will be one of invitation, not imposition.

As for that cement wall of suffering, it was…

  1. repeated trauma at the hands of the very doctors and body workers to whom I turned to help me heal
  2. life as I knew it being blown to bits
  3.  the frustration that I — an educated, intelligent, outspoken, spiritual woman who knew she had it in her to heal – was still somehow unable to find the exit door from the maze of chronic pain hell
  4. not knowing what had hit me and how ginormous and entrenched a force it was or how to begin untangling all of its knots.

Fortunately, around the time I discovered that crack, I was having dinner with a friend who responded this way: “Now you just have to make that crack your day-to-day reality, and the pain and suffering the crack.”

And that is just what I did.

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