I have stage IV breast cancer and I blog about it. But I’m not the only one—with the disease or with a blog. Lisa Adams, metastatic breast cancer patient and blogger with a national profile, recently became a touchstone for national debate about the use of social media in publicly chronicling a serious illness. In early January, two journalists, one at the New York Times and one at the Guardian, wrote pieces critical of some of Adams’ treatment choices as well as the way she lets readers into her life with cancer via blogs and tweets. Outrage over Bill and Emma Kellers’ pieces (who happen to be married) was swift and fierce, not just for the critical questions they raise about Adams’ choices but for inaccuracies in important details (like getting the number of Adams’ children wrong, or how long she’d been living with metastatic breast cancer) and in including quotes from private correspondence with Adams without permission, prompting the newspapers’ opinion editors to publish pieces alternately apologizing for and defending the journalists (if you want to read more, here’s one place to start: The Guardian website).
Perhaps the most controversial aspect of Bill Keller’s “Heroic Measures” column is his not-so-subtle suggestion that Adams should consider going more quietly into that dark night rather than aggressively treating the metastasizing cancer. In weighing the alternatives, he contrasts the treatment regiment of Adams to his own father-in-law’s “unplugged” death from cancer in Britain last year. Here Keller is wading into much-larger debates about not just how the U.S. apportions its medical dollars but how and when those of us with advanced-stage cancer (and other really bad conditions) should embrace the inevitability of death. I’m keenly aware of these debates, as they often play out in my own head. When I learn “my” cancer has metastasized from the bones to the liver or the lungs, how much aggressive treatment will I opt for? How are we supposed to decide when enough’s enough?
Almost exactly three years ago I was given a most amazing gift. On an exquisite fall day, my family and I were lured to a friend’s home and given a quilt sewn together by dozens of friends and family members. Over the past 3 ½ years, we’ve been overwhelmed by many meaningful gifts bestowed on us in response to my illness. But this one takes the cake.
The friend who came up with the idea of a quilt told us that back when I was at my sickest, she had a vision of creating a quilt for us. She considered this vision her marching orders and used the entries on my Caring Bridge site to make contact with our friends and family about participating in making a quilt.
Mailing fabric, dropping off squares at various locations, even meeting prospective sewers clandestinely in coffee shops, our friend recruited a small army of sewers to help make her vision a reality.
During the summer I moved into remission, sewers sent completed squares back to our friend. A quilting frame went up in her living room, and unbeknownst to us, her family hosted quilting nights where our friends and family gathered to stitch this quilt together.
On that gorgeous fall day three years ago, our family was rendered speechless by this gift and the deep love radiating from our dear friends and family who had gathered to stitch it together for us.
Sites like Caring Bridge can be effective mediators of grace to those of us diagnosed with a serious illness or suffering the effects of a life-threatening accident (see previous post for more on that). While the potential benefits of using such sites are many, it is nevertheless the case that publicly narrating an illness for a virtual audience can present challenges, especially for those less familiar with the world of social media. Amidst the benefits of using online communication to keep loved ones informed of your condition, you might encounter a few difficulties along the way:
5. Even though Caring Bridge is not just another social networking site, it can be mistaken for one.
When the condition of the person suffering from the illness or accident is updated frequently on Caring Bridge, family and friends often make a habit of checking the site regularly. It becomes part of the routine: check email, Facebook, Caring Bridge. While having others up-to-date on the latest medical development is one benefit of using such sites, it can also be unnerving to have attempts at chronicling grief and pain discussed and framed in social networking terms: “I just love your Caring Bridge site!” “You should post more photos!” “You should change the wallpaper on your site—you have a Fall background and now it’s spring!” Because it operates like other social networking sites, people who use it are often tempted to think of it in these terms. To others of us, though, it’s a tool we wish we didn’t have to use to keep others in our lives up-to-date on how we’re doing with stage IV cancer or other life-altering conditions.
4. Not everyone in your life reads Caring Bridge.
It is the case that for most of us using Caring Bridge, readership of our sites reaches more people than we could have imagined before we were sick or hurt. Developing a sizable readership on Caring Bridge, however, can also nurture the illusion that everyone in our lives reads our updates. That’s simply not the case. Some people close to me never read Caring Bridge; a few have told me that they’ve followed other Caring Bridge stories in the past and no longer have the energy to follow more. Negotiating the highly public nature of having your story followed by hundreds with those in your life who know nothing of you latest posts adds an extra dimension to the challenge of talking cancer while having cancer.
In the face of unwelcome diagnoses, serious accidents or other life-threatening events, one of the many challenges is how—and when and with whom—to communicate. Shortly after I was diagnosed with stage IV cancer, my brother set up a Caring Bridge site to keep others informed of my condition. While sites like Caring Bridge aren’t for everyone struggling with a serious illness or the aftermath of a life-altering accident, it is the case that grace can be mediated in powerful ways through such sites. As you or others in your life contemplate how to communicate with others in the midst of tragic circumstances, consider the following reasons for using Caring Bridge as a vehicle to let others know how you’re doing:
10. Sharing your story online means you don’t have to start from the beginning in face-to-face conversations.
Sharing bad news with others is exhausting, especially when it’s your bad news. Allowing others to read about your condition first alleviates some of the grief that comes in speaking the words like “I have stage IV cancer” out loud, over and over.
9. You don’t have to worry about whether you’ve informed all the right people of the latest update on your condition.
Concerning yourself with who knows what about your situation takes away precious energy needed to focus on coming to grips with your own condition. If you use Caring Bridge, it will send an alert each time you post an update to those who want one. This permits you to worry less about whether everyone who wants to know has been informed.
8. You can revise what you’ve written before you hit “post.”
Talking about a cancer diagnosis or the aftermath of a serious injury is a serious challenge. Writing updates about how you’re doing allows you to try out different ways of talking about your condition before sharing them with others. Editing before posting can get you closer to saying what it is you’d like others to know about how you’re doing.
7. When others respond to your words in unexpected ways, reading the comments first online gives you the opportunity to consider your response.
It’s not just hard for those of us with the cancer or injury to find the right words; it’s also difficult for those who care about us to find words that might be of comfort to us. Being able to read others’ responses before hearing them face-to-face makes it possible to think through comments you might not have anticipated before having to respond (or not).
Not many years ago, I had a dim view of the Internet’s ability to create cultures of anything productive. Living and working with others constantly connected to—and distracted by—digital tools left me skeptical that any new relational depth was being plumbed through our wired lives. I didn’t even have a cell phone until last year and was quick to judge others who ignored their children to carry on conversations in public on their phones.
Then I got sick. Really sick. In a matter of months, I went from being a healthy forty-one-year-old religion professor, wife, and mother to a virtual invalid with a broken back, a stage IV cancer diagnosis, and a grim prognosis for the future.
To keep family and friends updated during the early days following the diagnosis, my brother created a Caring Bridge site for me, a website dedicated to connecting people with serious illnesses with those who care about them. News of my diagnosis spread quickly; just as quickly loved ones, friends, and eventually even strangers signed up to receive my Caring Bridge updates. From my narration of what stage IV cancer had done to my body to sharing the grief of having to resign from my very full and wonderful life, each of my posts was met with dozens of responses on the Caring Bridge site, as well as emails, cards, packages, visits and calls from people from all corners of my life. It was startling to realize that through our connectedness via Caring Bridge I was being surrounded by a cloud of witnesses greater than any I could have previously imagined.
As a professor I write a lot. Until recently, however, I’ve never felt like a real writer. I attended conferences and listened to others talk about how they have all these books in them but not enough time to write them. I’d leave those conferences thinking about how I didn’t have any books in me waiting to be written.
After being diagnosed with stage IV cancer, I wrote updates on my condition for family and friends on a Caring Bridge site. Many readers of my site urged me to write about my experience in venues beyond Caring Bridge. Once again, I wasn’t sure I had a book in me; I often had a hard time putting into words what living with cancer felt like, looked like, tasted like. I wrote for academic venues; I was dubious about whether I could write in a more personal way. But I had taken my first few steps of writing in the first person on Caring Bridge, and encouragement from others to keep writing stayed with me.
Almost a year after my diagnosis, I heard conversation that changed my perspective on writing. I was listening to Mary Karr talk about her new book, Lit: A Memoir, on NPR. The interviewer, Kerri Miller, asked how Karr avoids offending others who appear in her writings. Karr said that those who show up in her memoirs get to read the scenes in which they appear before the book is published. Miller wondered what Karr does when she is asked to change what she’s written about her ex-husband or her mother. Karr told Miller that so far, she’d never been asked to change anything. Not buying this response, Miller pushed Karr. Really? How could that be?
Karr told Miller that she thought she hadn’t yet been asked to make changes in her depictions of others because it was she—and not the others in the story—who came out looking the worst in the end.