Digital Afterlives: Learning from Blogs of the Terminally Ill

Digital Afterlives: Learning from Blogs of the Terminally Ill

Timothy Recuber

You are going to die. It could happen soon. Suddenly. Before you’d ever even given much thought to it. But if you live in a place with a modern healthcare system, and are lucky enough to have access to that system, you might die after several weeks in a hospital bed. Or after months in hospice care. You might die after enduring chemotherapy off and on for several years. You might die after a long struggle with a degenerative illness. You might be told, at some point in your struggle with a chronic illness, that even the people who know best how to fix what is wrong with you no longer know how to fix what is wrong with you.

If this is your experience of dying, not sudden but slow, you are likely to share it with your close family and friends, of course, but also with others online. This sort of peer-to-peer sharing of health information has become quite common—a 2012 Pew Research Center survey found that one in four American Internet users had read or watched someone else’s health or illness-related experience online. Medical institutions are increasingly encouraging their patients with terminal diagnoses to blog about those experiences, as discussed in a 2013 National Public Radio report. One hospice director quoted in that piece explained that “as more people tell their story of dying with a terminal illness, we’re seeing a change in how we look at illness and mortality… Illness and death are still so technically driven, or medicalized. So getting a safe space, like a blog or social media, to talk about it can be very empowering.”

Blogs of the terminally ill are typically used to share medical updates, personal experiences, and reflections with close loved ones and distant others alike—but what happens when their authors pass away? Much has been made in scholarly circles of the ways that social networking profiles function when their authors die. But this is not the only way that death and the digital entwine. One of the less talked about avenues is the use of the Internet by the dying themselves—not to be mourned after the fact but to narrate a journey while it is in progress. In my research I have read hundreds of blog entries by terminally ill bloggers who have died. I want to know what they have to tell us about death, and what the texts they leave behind tell us about the social possibilities of our digital afterlives.

There is something very strange about reading the words left behind by a terminally ill blogger, something akin to witnessing a resurrection. Blogs are not typically meant to be read in this way; we wait for new entries from bloggers we follow but rarely work our way backwards into a blogger’s past. When a blogger dies, however, that past is all we have. Such blogs of the terminally ill begin, frequently, with a spouse or family member posting announcements about charity events, benefits, or memorial services for the departed blogger. Or with transcripts of eulogies from the funeral, or the obituary that was in the local newspaper, posted by a surviving family member. Mourners from near and far often share brief remembrances in the comments of those posts.

But then the author herself returns. Sometimes it is a short post, written in haste, acknowledging that things have taken a turn for the worse. One 25-year old blogger’s final post reads “i’m drowning in the medications/ i can’t breathe/ every hour/ once an hour/ i can’t breathe/ something has to change.” Another 39-year old woman described a painful scenario in her final post: “Bill and the home care nurse agreed I needed to go back to the inpatient facility so I am going tomorrow. I asked Bill point blank, ‘How much more time do you think I have?’ ‘A couple days,’ He answered soberly. To be given that prognosis by my eternally optimistic husband is hard.”

But if you keep reading, things stabilize. Medical updates come more regularly. Some entries describe simple, if painful, procedures. Some detail agonizing choices amid the uncertain future of a terminal diagnosis. Continue on and there are victories too. Test results that show tumors decreasing. Liver functions stabilize. All these give their authors hope, however faint or fleeting, that there is at least a little more time.

Terminally ill bloggers capture the preciousness of time better than anyone. It is a topic they return to again and again, trying to pass on a peculiar and hard-earned wisdom to readers for whom death is not so omnipresent. We all know that we will die, but we do not know the ways that a terminal diagnosis transforms one’s perception of life. Terminally ill bloggers try to explain this to us. As one 45-year old woman put it, “Everything is an equation now. Everything is a calculation. Everything has a cost. I try to balance risks. I study statistics and results. But in each equation I calculate, the result is always time. Nothing is more valuable than time that I am able to enjoy the world and those around me.”

A 32-year old woman similarly reminded her readers that “holding on can be something beautiful. Even when we know that it will be all in vain at the end, even though it will bring us the most difficult times ahead, it is the only thing that we as humans can try to do in the face of sorrow, loss, bewilderment or incomprehension. We are going to try holding on anyway, because there are so many things that are worth the while — feelings and memories that remind us just what warmth, bliss, pride, comfort, or pure happiness really is about. Holding on will make it harder for us, but why should life be easy anyway?”

Indeed, terminally ill bloggers are often putting their bodies through grueling chemotherapies or debilitating surgeries all in the service of gaining just a little more time with those they love. Most of the authors whose blogs I have read have been women, many of them mothers of young children, thinking about what will become of their families when they are gone. But they are not scared, or if they are, they do not write from a place of fear. They write about the powerful love they feel for their families. They document the big celebrations and milestones—birthday parties, first days of school, vacations—as well as the small moments of mundane activity—a thoughtful conversation, a peaceful moment in a garden, an unexpected visit from an old friend. As one 36- year old mother put it, “Last year, we had been told it would most likely be my last Christmas.  Friends and family rallied round, eager to spend time with me over the festive season.  Everything had to be perfect, with a giant tree, a 12hour feast and party games through the night.  Every so often I would catch sight of a tear in my husband, mother and sisters eyes. The camera was there to capture every moment, to be a reminder for our young children of the final Christmas shared with their mother. Yet tomorrow is my second ‘last’ Christmas and I feel utterly blessed.  I feel blessed that my children are a year older.  That they believe in the magic of Christmas even more.”

Chronic illness has been understood in the sociological literature as a kind of biographical disruption that the suffering must seek to repair. When I began this research project I expected to find the authors at least somewhat concerned with their own legacies, with explicitly reconstructing their biographies. I expected them to spend more time explaining how they’d like to be remembered. But that is not the case with most of the terminally ill bloggers I have read. They make sense of their own senseless afflictions moment-to-moment, post-to-post, and hold tightly to the present.

There seems to be a therapeutic benefit simply to getting all of this down online, to a community of sympathetic readers. Positive self-talk often appears on the blogs of the terminally ill in the guise of advice to others. As one author put it, “Forgiveness comes from the heart. In order to heal, we must be willing to forgive the past. Move away from our role as a victim and release the control and power the offending people and situations have had in our lives. We may even find compassion and understanding.” A 21-year old blogger advised her readers that “no one is ever truly alone – someone always has you in their heart… There is always someone who sees the good in yourself that maybe you do not see, but they are there.” Such advice reiterates the wisdom of the terminally ill author in a form that is ostensibly geared towards the readers, but is also a kind of reinforcement for the authors themselves.

What do we leave behind when we die? In an age when each of us is connected to so many distant others via a host of online platforms, when we produce so many texts and images scattered across these platforms, the answers to this question are likely to be more complicated than ever before. But if nothing else, terminally ill bloggers have left behind footholds on a path that all of us will one day have to climb. One blogger explained, just eight days before her passing, “Over years of my illness, and especially over the last year, I have been aware of the journey that I am on. Looking back I realize how much I have learned about myself, my loved ones, marriage, motherhood, faith, friendship, and love. It has been an extraordinarily difficult journey and I have wished it away many times, but I am grateful for it nonetheless. I feel as though I grasped some important truths during these past months that had previously eluded me. The irony is that I will not have a chance to use them.” Those of us who remain among the living would do well to make use of the gifts that these authors have shared with us, to seek out their wisdom as long as their blogs remain. Even when they die, terminally ill bloggers have much to teach us.

Read back far enough in the blog of a terminally ill author, get far enough away from the author’s death, and you find a more hopeful place. One where even a very bleak diagnosis does not dim the fight. Where the author’s body has yet to be ravaged by poisonous drugs and brutal surgeries. Where many difficult conversations with spouses, friends, parents, and children are still merely hypotheticals, possibilities somewhere down the line, on some distant horizon. Read back far enough and you’d swear you’re watching someone get better. And in a way, you are.

 

Timothy Recuber is a Visiting Assistant Professor of Communication at Hamilton College. He is the author of Consuming Catastrophe: Mass Culture in America’s Decade of Disaster. He tweets @timr100.

 

 

 

 

2 Comment responses

  1. Avatar
    January 06, 2017

    As my daughter’s anniversary gets close her first 1-9-16..Our Shauna 40..😪 This was so hard to keep reading but it opened more for me to understand.. 💔😢

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