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.

Despite all the challenges and problems with ways in which people connect online, I now understand that powerful healing communities can be built on virtual foundations.  While I initially viewed Caring Bridge as a tool to help me update others on the condition of my life as a cancer patient, it quickly became much more than that.  My updates started conversations with others who responded with stories of their own navigation of similar health journeys, offers of prayer or support, and acts of care for me and my family.  The conversations taking place online have often been illuminating, encouraging, and life giving during very dark times.

It is true that publically narrating an illness for hundreds to read and comment on is a risky endeavor.  In the three years I have participated in these online conversations, there certainly have been responses I have found less-than-helpful.  The much more common experience, however, is that others’ online words of support have held us up when we haven’t had the strength to do so ourselves.  In addition, it is often less difficult for me to explain how I’m doing in an online post than in a face-to-face conversation.  In virtual reality, my tears don’t make my point unintelligible.  Online, I can go back and edit my update before I post it.  In cyberspace, my vulnerabilities often can be better managed than they are in the actual space.  Being clearer about how I’m doing has allowed others to be clearer about how to be supportive.  

Public expressions of vulnerability on Caring Bridge also have prompted others to be vulnerable in return.  One poignant example of how a virtual community has encouraged vulnerability involves a colleague of mine at our university.  She and I have worked together for over a decade and before my diagnosis, we had never had a substantive discussion about anything personal.  A few months after I got sick, I received an email from this colleague—she told me about growing up in Israel as an agnostic Jew and how she often felt on the outside of religious practices like prayer.  After reading my postings on Caring Bridge, however, she became inspired to start praying.  Not long after she began praying, she led a group of students to study in Israel.  She then told me that in every church the group visited, she got down on her knees and prayed to Jesus for a favor: to heal her friend with cancer.  Her message to me ended with this: “I hope I didn’t offend Jesus–after all, I’m a Jew and I don’t even pray regularly–and there I was, asking Jesus for a favor. I think he’ll be ok with that, won’t he?” 

That an agnostic Jew would get on her knees in churches throughout Israel to pray for her Christian colleague living with cancer suggests to me that the Internet is capable of facilitating some deep communal ties.  Due to the new level of relationships that have formed in large part through our contact in cyberspace, I have been prayed for by countless individuals and many Christian communities of faith; I have also received a sage blessing from a Native American colleague, been prayed for in the synagogues and Hindu temples of friends and colleagues, had Buddhist meditation sessions dedicated to me, and Jesus has even been asked a favor by a Jewish friend who took a gamble on my behalf.  

The Internet is not going to save us from the rise of individualism or the other ills we currently face.  But recent experiences with virtual communities have shown me that the connections with each other we so desperately need can be facilitated in cyberspace.  And despite my long-held resistance to virtual connections, I’m now able to testify to the face that grace can and does come via the Internet.  

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.    

But even as we stand with Alice, time after time, at the edge of hopelessness, we catch glimpses of the grace suggested by the book’s title.  Without a whiff of sentimentalism, Genova subtly, insistently nudges the reader toward the realization that even in the midst of catastrophic loss of self, Alice remains a self worthy of respect, love, and care.  Even when she can only identify her daughters as “the two women in my kitchen” she still is capable at marveling at the beauty of her infant grandson.  Even though by book’s end she barely resembles the witty, articulate psychologist we meet in the book’s first pages, Alice is nevertheless, at some deep level, still Alice. 

How did I go from a resistant reader of this haunting story to seeing this book as a gift?  First there were the resonances with my own story.  As I’ve written in Hoping for More, before my cancer diagnosis, I had the “95 percent ideal life” as a professor teaching what I love; as a wife and mother of people I adore; as a forty one year old who ate right, exercised and slept eight hours a night.  Similar to Alice, the cracks were not clearly visible at first—a quietly nagging backache, a broken vertebra deemed a fluke.  Then, as with Alice, the diagnosis is spoken out loud and life is irrevocably changed.  Grief takes over as life switches suddenly from wonderful to traumatic; and as the consequences of the diagnosis settle in, just like Alice, I have a gut-level conviction that I won’t be able to handle the irreversible dismantling of my life by the disease. 

And yet this is where Still Alice offers readers in a gift: a reframing of life dominated by disease.  For those of us with life-threatening diagnoses for which there is no cure, grace can come in new ways of thinking about how this story will end.  I’m sure I’m not alone when I imagine the despair that’s waiting for me when the cancer in my body invades new places where it can no longer be contained.  Alice imagined a similar future, and like many of us, assumed that she would not want to live such a compromised life.  And while each of our journeys down this path toward sickness and death is distinct, the picture given us by Genova is that Alice’s life is still hers and—remarkably—still worth living, even when the loss is catastrophic. 

Three years ago, it seemed I was dying.  All signs pointed to the cancer’s invasion as too pervasive for any medication to contain it.  And as awful as that time was, and as terrified as I am now of returning to that horrible place, I have to admit that there still were moments of grace, of beauty, of hope.  Mostly they were fleeting.  But they were still there.  Still Alicereminds me of those moments.  After finishing Genova’s exquisitely painful first novel, the terror of my possible future has not diminished, but the book has helped me to remember that when that time comes, I can hope for still more than simply a life dominated by disease.  

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.  

But feelings of guilt also stand in the way.  As flowers and food arrive, as notes and packages show up at our door, as I learn of more people and communities holding me in prayer, the humility and the gratitude merge with guilt.  Would I have done the same for them? that small voice inside my head asks.  If I’m honest, the answer is often something other than “yes.”  Knowing this makes it harder to fully absorb the grace.

Why do we struggle so much with accepting grace?  I’d say it’s part of being human.  We want to be self-sufficient.  We want to believe we’re in control.  But when we are confronted with things like cancer or other serious challenges, it becomes painfully obvious that we’re neither self-sufficient nor in-charge.  And that’s a tough place to be.

But I’ve come to realize that this place is precisely where grace is most apparent.  When we acknowledge our helplessness and work to allow ourselves to be recipients of grace, we become more aware of our own vulnerabilities, which in turn can make us more aware of the needs and vulnerabilities of others.

I’m still working on becoming a better recipient of grace.  Amidst the discomfort, the indebtedness, and the guilt, I’m striving to be grateful for the gifts and the fact that I’m around to receive them.  And on my really good days, I try to participate in grace making itself known in lives beyond my own, especially those where suffering and grief seem to have the upper hand, even as I know they’re struggling as well with being a recipient of that lovely—and uncomfortable—gift called grace.          

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. 

In the midst of my search for a Lamott-esque approach to living with cancer, I taught theology (my only out-of-bed activity that spring semester).  Soon it was time to talk theodicy—about how there can be a good and loving God and evil and suffering in the world at the same time.  It became clear that this book on cancer I wanted to find would be even more valuable if it had a little Harold Kushner in it.  Kushner, whose book, When Bad Things Happen to Good People, was born out of his experience of being a father who loses a son, asks—and attempts to answer—some of the most basic human questions—Why?  Why me? Why this bad thing?  And where is God amidst the suffering? 

I wrote in my last blog entry about how I came to write Hoping for More, so I won’t rehearse that story again here.  But when I realized I had a book in me, I knew I wanted it to be a theological memoir (a theo-memoir, I’d like to call it) that read like a cross between Anne Lamott and Rabbi Harold Kushner.  Similar to Lamott, I realized that I should write the kind of book I was looking for.  Lamott writes,

I try to write the books I would love to come upon, that are honest, concerned with real lives, human hearts, spiritual transformation, families, secrets, wonder, craziness—and that can make me laugh. When I am reading a book like this, I feel rich and profoundly relieved to be in the presence of someone who will share the truth with me, and throw the lights on a little, and I try to write these kinds of books. Books, for me, are medicine.

May Hoping for More be good medicine for those who suffer from cancer or other lousy circumstances, who contemplate the big questions, who revel in unexpected gifts of grace, who love deeply and are honest about their own blemishes, and who hope for more here and beyond.