Last week I wrote about being a story-gatherer; strangers in airports, grocery stores, and coffee shops see my survivor body and then share their own stories of illness and loss. I gather a lot of these stories and then wonder what to do with them.
During the past week, a few friends who have experienced pregnancy have told me that being visibly pregnant confers the same (presumed) obligation to listen to stranger’s stories of pregnancy and difficult childbirth. Having never experienced pregnancy, I had not thought of the similarity of the implied agreement to listen to others’ labor and delivery stories to the responsibility that I feel. But it makes sense; in both of these circumstances, strangers choose us based on their interpretation of our bodies—theirs pregnant, mine as an above-knee amputee—as capable of understanding their suffering.
Witnessing another person’s story of suffering is a profoundly ethical act, and I try to always be a compassionate witness. Yet I am still left with the question of what to do with the stories I gather.
As you may know, in my other life I am a professor whose research focuses primarily on communication in healthcare. And I have a lot of friends whose research is in related areas of communication. Over the years, I have told many of them about my embodied story-gathering, to see how they would respond.
I told my friend Carolyn, and she said, “These people have trusted you with their stories. It is your sacred responsibility to share them with the world.”
I told my friend Kathy, and she said, “These people have trusted you with their stories. It is your duty to keep their secrets and not share them with anyone.”
I told my friend Bob, and he said, “These people have trusted you with their stories. You should carry brief informed consent forms with you everywhere, and when they start talking, ask them if they would mind signing off so that you can share the stories.”
So then I told my big brother—a social worker, counsellor, and adjunct lecturer, and he said, “These people have trusted you with their stories. You can do whatever the hell you want with them! You didn’t promise them anything. You don’t even know their names.”
With no consensus on what I should do with others’ stories, I wonder: Whose stories are these now? What might be their purpose(s) in telling me? Who benefits from sharing them? If I were to share them, in what format could that or should that happen?
I have never been shy about writing and speaking about my own experiences with cancer and late effects, but it feels different to me to share stories given to me by others. Last week I shared the story told to me by a man in an airport who was grieving for his wife, and I feel perfectly okay about posting it—I didn’t include any identifying information, and I did my best to portray the man with dignity. But there is a lot more I could do with these stories.
When I am wearing my researcher hat, this process is more straightforward (although imperfect and guided by careful ethics protocols). My research participants are volunteers, and I go to great lengths to ensure that they feel as comfortable as possible when interview or observe them. I deeply appreciate being entrusted to make sense of and share their experiences, and I generally feel confident doing so.
I do not think that it would be unethical for me to share the stories I gather in my everyday life, but I also have a sense that my role may be more of a story repository and less a teller of others’ tales.
What do you think I should do with the stories?
Realistically Ever After 
People tell you their stories because they want/need to be heard. So often when bad things happen, others shy away because the conversations can be too uncomfortable (often, for them). So to have someone willing to listen is a gift, one that should be shared — if you can do it respectfully and anonymously.
There is a lot of overlap here with journalism. But that’s another issue.
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Laura
Your musing always make me think. This is a particularly interesting question to me. Privacy, community, inspiration all competing with each other in a way. While I agree with another poster that there was no expectation of confidentiality when you received these stories, there was also no expectation that you would share them in a sort of global way. On the other hand it really serves the greater community to share; inspiration, validation, ideas for coping strategies, and more. I think my inclination would be to collect and publish in a very anonymous way changing the gender, race, locale etc (the black stripe across the face if you will) but to get the stories out there in the world. You have the pulpit.
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Keeping things bottled up is never a healthy thing, as I have discovered over the years and my ongoing health issues. Just sharing a story is therapeutic sometimes. My issues can’t be seen by the naked eye, so talking about it sometimes opens the doors to a discussion and the realization that I’m not alone, and some people are dealing with the same things I am. But we wouldn’t have know that without striking up a conversation. It’s also helpful to get a different perspective on how that person is dealing with their issues.
Communication is power. Share as much as possible. You never know when one person could see something you’ve written and be uplifted and feel less alone. (p.s. I miss you, my dear friend)
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