For Whom The Bell Tolls

July 17, 2017 at 2:16 pm (Uncategorized)

There’s a lovely ritual at the Cancer Treatment Center, where I go every month for my infusions. When the doctor declares a patient’s cancer to be in remission, she gets to ring a bell. It’s a signal, a marker that pinpoints a moment when she moves from the land of the ill back to the realm of the healthy. It’s a touching ceremony. All the nurses gather, and the whole treatment center applauds the lucky patient’s good news.

I want to ring that bell. But after over thirteen years of living with a chronic and serious illness, it’s not looking like an end is in sight for me.

We are narrative creatures. We construct stories out of our lives that have beginnings, middles, and endings. We shape what could seem like the chaos of everyday life into narratives: how we fell in love, came to our careers, raised kids, or got into trouble. It’s no surprise that illness narratives follow a similar arc—the lump, the biopsy, the treatment, the remission. Ringing the bell is a perfect moment in the story of an illness. Right here, at this point, I became well again.

Chronic illness doesn’t fit the neat narrative strictures by which we like to organize our lives. There is no neat ending in Chronic Town. The narrative of my illness reads like this: bad cough, biopsy, treatment…treatment…treatment. Sure, there have been ups and downs. I’ve had lots of dramatic material—months in the hospital, becoming a parent at the same time I got sick, and watching the disease move throughout my body. But there is no ending. There’s just more illness (or, on good days, less illness).

It took me three drafts of my memoir to realize I couldn’t stuff my experiences with a chronic illness into a classic beginning-middle-end narrative arc. But without a clear ending, I couldn’t figure out how to structure the book. What’s the dramatic turning point? Where does all the suffering lead to? Ultimately, I was wondering, what is the point? I finally realized how to write my book. Instead of one progressive story, I chose instead interweaving essays. The structure mirrors the reality: there is no ending, only layers of illness.

I’ve also gotten better at living in the shadow lands of chronic illness. For many years, I kept waiting to get better to embark on projects. Which only meant that I rarely started anything. It was a problem of mindset. I had to learn to live and love with an illness without an ending in sight, which proved to be pretty damn challenging. When something as big and brutal as a serious illness hits you like a semi-truck going ninety miles an hour, your inclination is to wait until you’re “better” to be up and around and moving. But after a baker’s dozen of years of not getting better, I’ve had to embrace the chronicity. This means showing up to the life I have at this moment, without the luxury of knowing whether or when the challenges will end.

What does this life look like? People ask me how I do it. When I step back, it occurs to me that it’s really just like living before I got sick—except with an acute awareness that everything can change in an instant and the knowledge that I must seize whatever scraps of energy and well-being I have to do something now. Which actually turns out to look a lot like living mindfully in general. When you stop to think about it, we all live tenuously, with the weight of our incipient mortality on our shoulders. Some of us just have more acute reminders of that than others, or more moments when the incipience of that mortality sits at a much greater remove.

I can sometimes find comfort in thinking of it like this, that my illness has made me appreciate my good days more than I might have otherwise. Still, I’d like to be able to ring that bell.


  1. Phyllis Lefohn said,

    Thank you, Rebecca. Your insights are so clear, so beautifully worded…so just plain REAL. Which makes them precious, because there are few people who can really be real. Perhaps that is one of the many gifts of this “mindfulness” that chronic illness has brought… With gratitude and love, Phyllis

  2. Leanne Shirtliffe said,

    Your clarity, insight, perspective and writing chops are amazing. I wish you the bell-ringing, or at the very least, less illness. ❤

  3. asocialvisionary said,

    Hi Rebecca, your story resonated because my husband suffers from Sarcoidosis too. I’m read that you get infusions, do you mind sharing what they use? My husband was originally on Imuran but he had a severe reaction to it, so they put him on Cellcept but it doesn’t seem to be working and he’s had pneumonia 2 times in 6 months since he’s been on the Cellcept. I wrote my first blog about his recent up’s/down’s with sarcoid, a good friend of yours read it and she sent me a link to your blog. Sending hugs from Pennsylvania and maybe we can share info? My husband is seeing a new Dr. at UPMC on Monday- we shall see if he has any new ideas with the research he does. Thank you for sharing your story.

    • Rebecca Stanfel said,

      I am SO sorry not to have seen this for 3 years. I stepped away from this blog for a while. Let me know if I can be of help still:
      My apologies again.

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