Words work better in the fellowship of knowing

A friend of mine with Stage 4 cancer told me, near the end of her life, “I hate it when people call me courageous.” I’d never known anyone with cancer and to me she seemed courageous because she was living her life with purpose, refusing to let her diagnosis paralyze her.

She was so authentically the same person she’d always been, for better and worse, and she was in this way unlike any other sick person I had known. 

All these years later, I understand more what she means about that word “courage.” There are so many words that people use to talk about the cancer experience that don’t work: “survivor,” “brave,” “fighter,” “battle.” I have to say, from my perspective, it isn’t that these words are bad or wrong, so much as most of them miss the point.

It can be lonely to have cancer. It tends to isolate you both physically and emotionally from other people. You can go days without speaking to anyone who isn’t employed in the health field. And, then, when you do speak to people you quickly realize that most of them can’t handle talking about it and/or that the words you have don’t work very well.

The metaphors seem to fall apart. People tell you to “fight this thing,” and you know it’s being said as encouragement. But then you’re left wondering what fighting looks and feels like. It’s really not patients who fight, it’s the doctors with their drugs and surgeries vs. the cancer cells. It’s more like your body is the battlefield. You don’t have all that much to say about what happens there.

I was in a coffee shop the other day and overheard a conversation between two women, one of whom had cancer. They were talking about the word “survivor.” She said, “I haven’t been in a plane crash. I have cancer. It’s still happening.”

Words just don’t hold up to the experience. But people do, the fellow travelers, the folks who’ve been there. I heard a speaker at a workshop the other day call this the “fellowship of knowing.” And it just hit me in the heart. That’s the phrase that sums up my support group. Words work when I’m there because the people in the room have spoken the same words themselves, they’re hearing them from the inside out.

This isn’t to say that everyone in a support group has the same feelings and experiences. Bladder cancer is a world apart from leukemia. The only people I’ve ever heard who describe having cancer as being a prisoner, are those with leukemia. Imprisonment is a dominant theme for people who are kept in isolation for weeks of treatment.

And, people with cancer sometimes say stupid, tone deaf things. The first time I attended my support group someone assured me that cancer was a gift. From where I sit now, I think I understand what he meant, but at the time it wilted me, but he’s the only person I’ve met who feels that way. 

Still, in the fellowship of knowing you find people who understand why you want to talk about gruesome things or sad things. It’s a standard exchange for one person to ask another what their constipation remedies are. Or, for someone to ask, “What do you think about hospice?”

In the fellowship of knowing you can settle back in the couch, curl up and listen, knowing that what you’ve felt is also in the heart of another person. You are known, understood, accepted. When you hear something you’ve said before come out of the mouth of a stranger in Starbucks, it’s a moment of comfort.

In the fellowship of knowing, you can be weak and the people beside you can loan you their strength or they can be strong on your behalf. It’s only in this group where you can find and benefit from tough love.

I’m so grateful for my friends and family who have shown such care to me. Their empathy and their openness have helped me through some terrible times. For me, though, there’s nothing that compares to a hug from someone who knows, from someone who’s been there. That fellowship of knowing is the safest place in this world.

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