Embraced by the Virtual Body of Christ:
A Conversion Story
Not many years ago, I had a dim view of the Internet’s ability to create networks of trust and support. Living and working with others constantly connected to—and distracted by—their digital tools left me skeptical that any new relational depth was being plumbed through our increasingly digitized lives. I did not own a cell phone and was quick to judge others whose attention focused more on their hand-held devices than on the people sitting next to them.
Then I got sick. Really sick.
In a matter of months, I went from 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 proposed the creation of a CaringBridge site, an online social network that connects people who have serious issues with those who care about them. Because I was a digital skeptic, I imagine that if I hadn’t been on so much oxycodone I would have protested setting up such a site.
Once the site went live, news of my diagnosis spread quickly; just as quickly, loved ones, friends, and even strangers signed up to receive my CaringBridge updates. From my posts about what stage IV cancer was doing to my body to entries on the grief of having to resign from my very full and wonderful life, my cries were met not just with responses on the CaringBridge site but also with emails, cards, packages, visits, and calls from people from all corners of my life. It was shocking to realize that through virtual connectedness via a website, I was surrounded by a cloud of witnesses greater than any I could have previously imagined.
Even after growing up in the church and acquiring a doctorate in theology, I had never given the church universal much thought in life before cancer. I have always been a big fan of the local church, extolling the virtues of participation in local communities of faith that at their best offer glimpses of the heavenly city where there’s no more crying, no more dying, only light, only love. I have long believed that when the church is being the church, it is present in profound and compassionate ways with those who suffer. As the daughter of a pastor, I have witnessed local churches time and again embody the hands and feet of Christ in their ministries to those in pain. In life pre-cancer, any talk of the church universal always seemed abstract to me, largely removed from the daily realities of pain and suffering that fill our lives.
While members of my local church community have most certainly been the hands and feet of Christ in their ministry to me and many others in pain, I have nevertheless been awakened to a new—indeed, almost mystical—understanding of the church universal and the healing effects it has had on my life and the lives of my family and close friends. The church universal is no longer a concept I simply gloss over in the recitation of a creed during worship. I have been surprised and humbled by the ways in which the church universal has become a tangible agent of grace in my life—most shockingly for me is experiencing the wideness of the church through virtual reality: that is, the body of Christ incarnated in, with, and through the power of Internet sites like CaringBridge.
This is not to say that before the Internet people were without the benefit of vast networks of prayer and support. But Internet connectivity has exponentially increased the speed and scope of such connections. This experience of the virtual body of Christ has also gifted me with fresh appreciation of the necessarily ecumenical character of the church catholic. Prompted by my entries on CaringBridge, many of my friends from the Roman Catholic tradition—the church that holds most tightly to this notion of universality—have embodied Christ to me in powerful and poignant ways. As news of my diagnosis spread, Mass was dedicated to me in India, Sri Lanka, California, as well as closer to home in Minnesota. I have received hundreds of cards from a Catholic parish half a country away where Sunday school classes pray for me weekly. I have been given a medallion blessed and sent on to me by a friend who also happens to be a priest. These traditions of dedicating, blessing, honoring—traditions that make rare appearances in my own Protestant (Lutheran) expressions of church—have made their mark on my soul. To hold the With God, all things are possible medallion blessed by my friend brings deep comfort and facilitates a sense of hope for what lies ahead.
Those who have experienced diagnosis of a serious illness or other traumatic event know that what often accompanies experiences of trauma is an inability—especially early on—to put into words what it’s like to live in the midst of such trauma. The psalmist captures this when he writes, “I’m so upset I can’t even speak” (Ps 77:4b). Those words resonate at a deep level with my experience of being undone by an advanced stage cancer diagnosis in my early forties. Words went away. I initially was at a loss of how to describe my condition (metastatic breast cancer fractured two of my vertebrae and was eating away at my hip, my pelvis—come again??) or over what words were available to try and make sense of what was happening to my body, my spirit, my soul. What is it, then, that those of us who experience this kind of trauma need from those around us (and by implication, from the body of Christ)? Trauma theorist Cathy Caruth describes the challenging negotiation those who work with persons who’ve been traumatized are faced with: “[It’s about] how to help relieve suffering, and how to understand the nature of the suffering, without eliminating the force and truth of the reality that trauma survivors face and quite often try to transmit to us.” Relief of suffering, then, is closely linked to those who suffer being able to express the contours of their suffering as well as those who love and care for them understanding those same contours.
My own experience of publically narrating this journey with stage IV cancer virtually on CaringBridge has become a powerful avenue for helping others (and myself ) gain deeper knowledge of the particularities of my cancer condition. Spelling out what had happened to me to get to the diagnosis of metastatic breast cancer allowed me to orient myself and everyone else to my unusual and new reality: the breast cancer was not detected through annual mammograms; it metastasized to my bones, fracturing first one then another vertebra in my back. It was diagnosed through a biopsy on my spine. Treatment included radiation to the bones where the cancer was most active: the spine, the pelvis, and the hips.
For all of us familiar with the breast cancer drill (finding a lump, biopsying the breast, undergoing a mastectomy, radiating the breast, enduring chemotherapy), my story simply did not map the dominant breast cancer story. Neither did statistics of survival: at the time of my diagnosis in December 2008, studies reported that eighty percent of patients with metastatic breast cancer were dead within five years. My broken back, coupled with the severity of the diagnosis, altered every part of my world. And the ability to have access to a virtual space where I could begin to share the particularities of my story proved a vital tool to help me create a narrative of the suffering and upheaval metastatic breast cancer forced into my life.
But for many who endure traumatic events such as a life-altering diagnosis, it is unnerving to think about publically narrating an illness for hundreds to read and comment on. I agree: it is a risky endeavor. Philosopher Annette Baier’s insight into possible risks of being vulnerable is applicable to the public sharing of journeys with cancer and other awfulness: “Where one depends on another’s good will, one is necessarily vulnerable to the limits of that good will. One leaves others an opportunity to harm one when one trusts, and also shows one’s confidence that they will not take it.” What Baier helps makes clear is that any and all attempts at becoming vulnerable by sharing what dealing with such awfulness looks like from the inside carry risk, not just the sharing of vulnerabilities via digital communication but also the sharing done face-to-face. Doing so in cyberspace, however, multiplies the interactions and potentially amplifies the vulnerability.
In the seven years I have been participating in online conversations about life with incurable cancer, there certainly have been responses I have found less-than helpful. A couple could even be considered harmful. None of which is qualitatively different than what I’ve experienced in face-to-face communication. The much more common experience of digital communication about my cancer has been that others’ online words of support have nurtured a powerful, healing culture that has been building since my diagnosis. I have found that sharing with hundreds of readers aspects of my grief, my struggles (physical, spiritual, psychological), my setbacks, and my progress better equips those who want to support and care for me and my family to offer more tangible and beneficial care to us all.
I write this book about the virtual body of Christ because my experience of being supported by a virtual network since my diagnosis has converted me to a new reality; I have moved from a committed, self-righteous skeptic about the potential benefits of digital connectivity to an unabashed advocate for the underappreciated ability of virtual spaces to help incarnate healing love in the lives of those who suffer. And with the zeal common to converts, I am on a mission to spread this message to any and all who will listen.