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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