grace blog, by Deanna Thompson

Welcome. This blog offers reflections on the gifts that grace our lives, even in the midst of stage IV cancer diagnoses or other lousy circumstances that come our way. Thank you for visiting.

Becoming a Fan of Christopher Hitchens

I was never a big fan of Christopher Hitchens’ take on religion.  A self-described antitheist, Hitchens took great pleasure in mocking God, religion, and people of faith.  While there are many valid critiques of religion out there, Hitchens’ attacks seemed designed to get a rise out of his readers rather than to add any new insight to the debate.

Even though I wasn’t a fan of Hitchens’ views on religion, I’ve become a fan of the man.  After he was diagnosed with esophageal cancer in 2010, Hitchens began writing about his life refracted through this new lens.   The cancer did not let up, and he died at the end of last year.  But his words live on, particularly in a posthumously-published book entitled, Mortality, a collection of his Vanity Fair essays on the challenges of “living dyingly” with cancer.

I didn’t find a soft spot for this man simply because we have a stage IV cancer diagnosis in common.  I became a fan of his writing because I think it’s worthwhile to talk about cancer in ways that do more good and less harm. 

In his essay entitled “Miss Manners and the Big C,” Hitchens makes clear why more conversations on how to talk about cancer are necessary.  He points to the need for better manners by those whose insensitive comments about life with cancer leave their mark.

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A Most Amazing Gift

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.

DTquiltBLOG

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. 

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Off the Mat

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.

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Beyond Fragility

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.

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Top 5 Challenges of Using CaringBridge When Something Bad Happens

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.  

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The Top Ten Reasons to Use CaringBridge When Bad Things Happen

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).

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Having Cancer in a Digital Age

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.

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The Still More of Alice

This summer my aunt sent me a copy of Lisa Genova’s Still Alice, a novel about a 50-year-old Harvard professor diagnosed with early onset Alzheimer’s. Scanning the back cover my eyes rested on the phrases “searing spotlight” and “dread disease,” tempting me to set the book on the bookshelf unread.  My own dread disease of stage IV cancer already dominates much of the landscape in my life—why devote precious summer hours to another tale of grief?  Breezy novels about beaches and sunsets seemed a more attractive option. 

But the book was a gift, so I decided to give it a few pages.  It didn’t take long to be drawn in to Genova’s chronicling of the cracks in Alice’s wonderful life.  A thriving professional woman at the height of her career, Alice’s life was rich with things we in academia covet: smart students, speaking engagements in lovely locales, always-engaging campus environment.  Amidst the loveliness of her life, the forgetting begins slowly, almost undetectably, building to a silent roar that only Alice can hear.  She initially hides her diagnosis from everyone in her life, hoping that if she doesn’t say the words “early onset Alzheimer’s” out loud she can prevent the disease from taking control.  But take control it does, and the rest of this first-person narrative walks the reader down the treacherous path that Alice must take as her life becomes increasingly dictated by the disease.    

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Becoming a Better Recipient of Faith

In the midst of the suffering and grief cancer has brought into my life, ties binding me to others have been cast in stark relief.  Cancer has succeeded in ending some relationships, but the far greater reality has been the embrace of family, friends, colleagues, neighbors, even acquaintances who sojourn alongside me in this journey with cancer. 

It’s humbling to be on the receiving end of so much extravagant love and care.  I often find myself asking: What did I do to deserve these gifts of grace? 

Clearly I didn’t do anything; that’s why it’s called grace—it’s underserved, unmerited.  I got cancer, which was also undeserved (but not in a grace-like way); all of a sudden my family and I needed lots of extra help, support, and prayers—and people came to our aid.  

To be so in need, however, is an uncomfortable place to be.  We live in a culture that valorizes self-sufficiency.  Our lives overflow with schedules and commitments; we frequently rehearse with others our ability to manage it all.  When cancer suddenly invaded my family’s life, my husband, my daughters, and I were forced to relinquish control of most of those schedules and commitments.  Mixed in with the gratitude for gifts of grace that came our way was also a gut-level resistance to being so dependent on others.  It’s true that according to the logic of grace we are not obligated to return these many favors.  They are gifts freely given.  Yet even as I give thanks for the innumerable gifts of grace we’ve received in the past several years, I still feel in debt to so many for carrying us when we couldn’t carry ourselves.  

I work to accept these gifts of grace.  

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Anne Lamott, Harold Kushner, and Me

Even though I read for a living, I couldn’t pick up a book about cancer for months after my diagnosis.  I was living cancer 24/7.  No need to spend any additional time reading about it. 

But once it started to sink in that cancer defined the parameters of my new life, I sought out books that would help me understand the contours and dimensions of life saturated with cancer. 

I read earnest accounts of strong and courageous people knocked down by cancer; meditations on personal journeys of faith in the midst of cancer; expletive-laced narratives highlighting the awful attributes of cancer; and prescriptions for the correct language usage when discussing cancer.

I appreciated the writings of others struggling to live with this disease.  At the same time, being a religion professor who thinks long and hard about the big questions of life, I longed to read more about wrestling with those big questions in light of cancer.  What I read about faith and cancer often pushed toward a sense of resolution I couldn’t relate to.  When I found narratives that were wholly unsentimental and irresolute, faith often was not a prominent theme. 

What I finally realized I wanted to read was the kind of book Anne Lamott would write if she had cancer (which, thankfully, to my knowledge, she does not have).  I longed for something like Lamott’s wry, honest accountings of her failures and successes; of life’s challenges and unexpected gifts of grace; of the wonder, humor, and chaos of human relationships. 

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