The Healing Power of Stories

This is not a triumphalist story, even though it begins like one.

Yesterday a woman with Stage 4 breast cancer told me, "the past 2 years [since diagnosis] have probably been the best of my life."

She wasn't celebrating cancer and she wasn't claiming a big triumph. Nor was she suggesting that you get cancer because you need or deserve to get it. She was simply, calmly, and quietly acknowledging how she has grown while responding to her cancer diagnosis just after I met her two years ago. She has changed her diet, she has taken charge of her own healing, she has learned a bewildering amount about cancer and a wide range of treatment options, and she continues to collaborate with and challenge her medical care team. She says:

I have found a core of strength inside me that I didn’t know existed and I have found my voice to advocate for my needs. Cancer has been the greatest teacher of my life and I am so grateful that I am able to accept the lessons it continues to teach me.

It's not always about "beating cancer"

The big thing about cancer stories is not triumph but remission. Cancer is seldom completely cured: survivors celebrate the extra time that successful treatment gives us. Cancer stories, including that of the wonderful woman mentioned above and my own story, are not about completely restoring what we had before, but rather about living the best life we can with the bodies and the time we have.

Restitution stories: Yearning to get back what we have lost

In The Wounded Storyteller, Arthur W. Frank sheds light on how we tell our stories and the impact of sharing them. Perhaps the most common category of story he identifies is what he calls a "restitution narrative" where you heroically defeat the illness and get back all you have lost. This is the triumphalist story I promised not to tell today.

But pause for a moment and think how often we encounter such stories: almost every medical advertisement on TV tells a fairytale of somebody suffering deeply, then taking the advertised cure, and miraculously healing almost instantly. Not to mention getting lots of love from partners, family, dogs, et al. as the mini-story closes.

Many restitution stories exaggerate, like the ads we see on TV. With cancer, they can be outright lies, but deeply attractive ones.

When I was diagnosed with cancer, my first thought was to root it out of my body. After surgery, my focus was on restoring my normal life. It is natural to yearn to get back what we have lost. "Getting back to normal" is a huge part of the conversation on the prostate cancer support groups I belong to, even though most of us are actually challenged to find a new normal which is physically less able than before.

The problem with cancer restitution stories is that remission is about as good as it gets. Our bodies continue to generate cancerous cells and there can be no certainty that they won't start gathering and proliferating again in a life-threatening way.

Being with the chaos of not knowing

Probably the most uncomfortable illness stories are gathered by Frank under the heading of "chaos narratives." Sometimes illness is so overwhelming that the sufferer can't speak at all, can't tell a coherent story. He acknowledges the loving carers who report these stories on behalf of those too ill to stitch together their own narrative.

The importance is in recognizing that not all human experiences resolve into neat stories. He invites us to face the inherent chaos of serious illness and the fact that medical science does not know all the answers. Although I have been lucky with my cancer, I have still lost a lot. Some of the most powerful regeneration has come from facing the chaos in my own illness and loss.

The relevance of this goes beyond illness, remission, and recovery. Our world faces such complex challenges that nobody can know the solutions. If I think I know the answer, there is sure to be somebody else who is absolutely sure the opposite is true.

As we grapple with global inequity, violence, and climate change, along with the current pandemic, the world is calling on us not to give up. Be with the not knowing, and pay attention to what emerges as a way forward.

Quest narratives: Eyes wide open towards illness and seeking to use it

We need to find our voices and tell our stories because to connect with others is to be human. It has been profound for me to read Frank's manifesto:

This book was my attempt to widen the circle, to amplify and connect the voices that were telling tales about illness, so that all of us could feel less alone.

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Getting ill is frightening and often feels very lonely. Many illnesses, and particularly cancer, are often undiscussable because of the radical reaction it evokes from healthy people. Prostate cancer is difficult for men to discuss because of its impact on sexual function and identity. Many women find similar difficulties speaking about breast cancer.

Yet, as Audre Lorde famously wrote, "My silences had not protected me. Your silence will not protect you."

Without being triumphalist, we can still learn and grow if we have enough energy to actively choose our ways of responding to illness. This was the inspiring message I got from the Stage 4 breast cancer survivor's story yesterday, and I am deeply grateful.

Join the healing story circle

Whether or not you are currently dealing with illness or loss, being part of the storytelling circle has healing potential. It's not just about the illness or loss, rather, it is about equipping ourselves for when things don't go the way we want them to, the times when we don't even know which way is forward. Much strength and creativity is the reward for facing these hurts, losses, and dilemmas with eyes wide open.

Perhaps this is the deeper point of scary stories on Halloween.

In a way, serious illnesses and loss experiences and stories are practice for dying. We all have to age and die, and the quality of our last years depends largely on how well we adapt to loss and change. For those of us who get ill and lose loved ones or become disabled, yet live to tell the tale, there is also new possibility.