Back when I was really sick, people recommended I take up yoga. This suggestion annoyed me. Cancer had broken my back—not once but twice. Couldn’t they see that bending and stretching was beyond what my body would allow?
After months of back braces, surgery, and radiation, I moved toward remission and living without a brace. Again people recommended yoga and again I was annoyed. I was building strength and logging many miles on my bike—couldn’t they see that I was beyond gentle stretching?
But the world’s preoccupation with yoga seemed to follow me everywhere, and I finally relented and attended a yoga class offered as part of a weekend retreat. It was different than I expected, more challenging than I imagined. And it left me feeling clear-eyed, focused, and calm.
I considered taking up yoga.
Then a yoga studio opened two blocks from my house. I took it as a sign and started with a basic vinyasa class. The class was challenging and rewarding. My back benefited from the core work. I gained flexibility and expanded my range of motion.
Recently I was interviewed for a radio show on what it’s like to live with—and talk about living with—cancer. The interviewer asked thoughtful questions, including one I hadn’t heard before. The interviewer set up her question with a reference to a friend of hers who doesn’t want others to know that she has cancer because she doesn’t want to be treated differently, like she’s some breakable object. The interviewer then confessed to wanting to treat me “gently” during our interview, which led to her question: what’s my take on being viewed as fragile because I have cancer?
It doesn’t take much effort to figure out that I’ve opted for a more public approach to living with cancer rather than a keeping-quiet-about-it approach. I’ve thought a lot about the dynamics of going public with my condition; even so, the interviewer’s question was a bit startling. No one has framed the issue for me in quite that way: that when we’re public about our illness or our suffering others will treat us differently, and that is something we might want to avoid.
I think it’s fair to say that cancer confers a special status on those of us who have it. I think it’s also fair to say that other people knowing we have cancer often changes how we interact.
I can see where the interviewer’s friend fears being treated differently. We pride ourselves on being independent and in control of our lives; cancer wreaks havoc on all of that. Being out there about our diagnosis and our struggles often makes it plain to others that we’re neither independent nor in control. It makes sense that we’re reticent to make that reality public.
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).