When you have a chronic disease or ongoing struggle, it is often difficult to talk about it.

On the one hand, you don’t want to brand yourself as someone with a particular disease or struggle. It’s not a lot of fun going around with a label like, “the woman with Chrohn’s disease.”

On the other hand, it is sometimes difficult to bear the burden alone, even if it’s not a life-threatening or dire one.

This is why I was very intriugued to read an article in the current Wisconsin Woman magazine about local artist Carol Chase Bjerke.

Several years ago she had surgery to treat cancer. As a result she was left with an ostomy, which is an opening in the abdominal wall through which the body waste passes.

Even though she was grateful to be rid of her cancer, living with the ostomy was devastating to her.

I journaled away, trying desperately to find a metaphor. But there didn’t seem to be anything appropriate – or polite enough – for speaking about all the excrement I was handling. This went on for two and a half years…”

Eventually she started to notice that the disposable supplies used for her ostomy had certain aesthetic qualities.

Her Hidden Agenda art project was born. She had found her metaphor.

As she started sharing her artwork with friends she discovered:

As we talked, it became obvious that the artwork was facilitating the conversations that had previously been unspeakable.

This reminds me of the metaphor one of my daughters and I used shortly after her diagnosis of type 1 (juvenile) diabetes in 2007.

At that time we were in a Star Trek Voyager phase and were in the process of watching the episodes via Netflix DVDs. All my daughters liked Captain Kathryn Janeway and the other strong female characters such as B’Elanna and Seven of Nine.

As we talked about her diabetes I would say, “you’re the captain of your body, just like Captain Janeway is the captain of her ship.” I did not want her to despair in the face of this disease or think that diabetes had control over her.

This made it easier to have conversations with her about diabetes. It’s interesting how something as simple as a metaphor or story can totally shift one’s attitude.

As Isak Dineson said, All sorrows can be borne if you put them into a story or tell a story about them.”

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Filed under: Stories/Storytelling

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