Tuesday, September 25, 2012
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.
But what hooked me was the breathing. Yoga, I’ve come to understand, is not just about stretching or moving limbs into strange postures. Key to the practice is the breath. The goal is to unify breath and movement, to breathe in energy and expel stress.
After six full months of the introductory course, I moved—with some trepidation—into a more advanced class. Many of the postures were far out of my league. But the breathing was still at the heart of the practice. In my new life of living daily with the reality of cancer, I was being helped by the breathing, the focus on the here and now, and the pleasure of being able to move into postures that not long before seemed permanently out of reach. Yoga became integral to coping with my new life.
My friend who mentored me into yoga recommended I try hot yoga. Sweating at the sound of it, I doubted I could enjoy such a thing. I asked my friend what one does in hot yoga. “You hold the postures, sweat a lot, and try not to freak out,” was her response. I told her that didn’t sound very appealing. “If you can learn to breathe through it and not freak out on your mat, you can learn to breathe through it and not freak out off your mat,” my friend said, encouragingly.
As I continue to practice yoga, often at high temperatures, I’m grateful for more than just the physical benefits of yoga. The wise words of my friend helped me understand why practicing yoga has become such an important part of my life: it is the breathing, the focus, and the letting go on the mat that helps me with focus and letting go off the mat.
There has been much debate over whether yoga is a religious practice. After all, it is rooted in the tradition of Hinduism. Even though many presentations of yoga in the U.S. today have been severed—or at least loosened—from these Hindu roots, I’m not alone when I say that I experience yoga as a spiritual practice. As a Christian, I appreciate learning from a practice rooted in a worldview that has thought more about mind-body connections than most people in my own tradition have. Those of us in mainline Protestant Christianity can live too much in our heads, and our own religious practices can neglect the very reality that we have bodies. Yoga helps me live into the Christian conviction that bodies matter.
Cancer’s invasion into and threat to take over my body has made me more conscious of how, in many ways, I am my body. Being on my mat in yoga translates into benefits for my body, mind, and spirit off the mat. And that’s a gift of grace.
Monday, September 17, 2012
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.
At the same time, I wonder if some people keep their diagnosis to themselves because they worry not about being treated with too much care but with too little. When others in our lives know about our diagnoses, our treatment, our struggles and don’t acknowledge them in the ways we hope (expect?), that can be more difficult to handle than being treated with extra care. It is simply the case many of us fail to rise to the occasion of saying or doing the “right” thing for those in our lives who are hurting. And inadequate responses from others often only increase the hurt. So perhaps it’s not just fear of being viewed as fragile but maybe also a fear of being viewed as just the same as you were before the diagnosis.
As I’ve continued thinking about this issue, I’ve become more aware of how at times I am treated differently because I have cancer. And some of those experiences have been hurtful. But I propose that the issue can be framed in yet another way: instead of feeling upset at being treated as if I need extra care, I’ve often experienced that extra sensitivity as a bestowal of grace.
On good days, when we know we’re interacting with someone who’s going through a tough time, we are more conscious about what we’re saying; we pay more attention to non-verbal cues (like mist in the eyes); we are more patient when the response to “How are you?” takes more than a few seconds. Not only haven’t I minded being treated with more care by folks who are trying to be intentional about to say, but I’ve also been treated to more authentic conversations since cancer entered my life than I’ve ever had before. In many cases, the fact that I have cancer strips away the superficial haze in which we often operate and opens up the possibility for meaningful sharing of deep fears and hopes.
To say there’s grace in being treated differently is not to romanticize life with cancer. I’ve said it before and I’ll say it again: having cancer sucks. And yet I cannot deny that I have received more gifts of grace since my diagnosis than I ever could have imagined. While I’d leap for joy if the cancer removed from my life, the fact is it’s still here, and when that fact slows us down, and encourages us to talk to and hear each other, there’s grace.
Monday, September 10, 2012
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.
3. Sometimes there’s pressure to post when you’re out of words.
Talking about a new, unwanted life with cancer or life-altering injury takes courage, skill, and energy, which aren’t always available when grief, pain, and depression become regular companions. Writing updates on Caring Bridge can be a helpful exercise in finding words to communicate how you’re coping with your new life. At the same time, there are moments of walking this path when words prove elusive, out of reach. Surgery, treatment, or the psychological impact of a serious diagnosis can bring on periods of drought at the well of words. And when words refuse to come, updates don’t get posted on Caring Bridge, and people start to ask why. But when words are scarce, having to explain why there aren’t more words, more updates, often serves to heighten the sadness and frustration at the absence of words.
2. There are no clear guidelines for how to stop updating gracefully.
Thankfully many people with Caring Bridge sites do get better, even if temporarily. When the person’s life hangs in the balance and the future is uncertain, regular updates on Caring Bridge make good sense. What happens to the Caring Bridge site, though, when you’re walking the long walk with a diagnosis? As with other social networking sites, both the ones posting and the ones reading can grow attached to this mode of communication. So when there’s nothing new to report, sometimes for months at a time, easing up on this communication can be difficult. It took me awhile before I learned to be clear in my posts that I wouldn’t be sending another update for two or three months. This helped me and my readers know that I’m doing well enough to take a break from Caring Bridge, but since my diagnosis has no cure, I also plan to maintain a relationship with my readers for the long haul.
1. Both the public nature and popularity of Caring Bridge encourages comparison about who handles their illness or accident most gracefully.
Before there were virtual ways of sharing stories of illness and injury, comparisons were made over how some deal with being really sick or injured courageously while others deal with it poorly. With the advent of sites like Caring Bridge, we now have another potential way to compare. Of course it can be helpful for those of us who are really sick to hear about strategies for coping used by others who are really sick. At the same time, comparing and contrasting how two different people use Caring Bridge can often lead to praising one approach and criticizing the other. It’s important that those suffering from life-threatening conditions know that sites like Caring Bridge exist, as well as hear about their potential to communicate support. But at the end of the day there is no roadmap for how to live with cancer, or journey on with a debilitating injury, and we can work to be mediators of grace even when there’s no Caring Bridge site to help us do so.
Saturday, September 1, 2012
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).
6. When it’s too difficult for you to write about how you’re doing, someone else can do it for you.
Hospitalization, surgery, or treatment can make it physically or emotionally impossible to write an update. With Caring Bridge, others in your life can write updates for you, and those who care about you can still know how you’re doing.
5. Posting some of the challenges you’re facing can lead to helpful feedback and support.
Sharing some of the challenges facing those of us with serious illness or injury on Caring Bridge can solicit meaningful advice. When I finally went on sleep medication, I discussed the nasty side effects in an online post. Many readers of my site then shared their stories of sleep medications and techniques. Their feedback helped me get on medication with fewer side effects, allowing me to start sleeping—and coping a bit better—with my new life with cancer.
4. That there’s a record of your on-going story and others’ on-going expressions of support online is useful for those new to your story and those who’ve followed your story since it began.
For those of us who face a long journey living with illness or disability, Caring Bridge can continue to serve as a site for new people in your life to learn more about your journey. That others’ words of support are always available on Caring Bridge can also be a source of consolation for family members, who read and reread those comments to help them gather strength.
3. People post words of support in the guestbook without expecting a personal response in return.
Many of us who become the recipients of others’ kind words and actions in times of great need feel guilty about our lack of expressed appreciation or even acknowledgement of the kindnesses. When people post comments of support on Caring Bridge, they typically do not expect a response; this allows us to receive the gift of their words without the guilt that we may not be able to respond.
2. Sharing your story online increases the numbers of people praying for and thinking about you.
A diagnosis or injury changes everything. Shock and pain of such bad news threatens to overwhelm. The community of support Caring Bridge helps create can carry grieving families when they don’t have the strength to carry themselves. Because a link to a website can be forwarded so easily, networks of support can increase exponentially as family and friends pass on the story. In the midst of the grief that cancer has brought into our lives, knowing of the many who pray for us and keep us in their thoughts helps us keep going.
1. Using Caring Bridge makes it harder to feel like you’re in this alone.
To figure out what it means to face your own mortality while most others around you aren’t facing that same reality is often an alienating experience. The world keeps going about its business while your world threatens to stop moving altogether. Caring Bridge helps others feel connected to you, which in turn encourages them to reach out to you, which reminds you that even though you have cancer or a disability or a life-altering injury, you are not alone.
[Coming next week: The Top 5 Challenges of Using Caring Bridge when Something Bad Happens]