Following Bud

There’s a lull in the conversation going on around me. I check my email, Facebook, and then scroll through posts to pick up reading where I left off:

This otherwise cry-free Bud-face was born to revel and laugh, I say. To tell stories. To live stories. To sing and play them. To drink of the magic elixir of life and to share the wonder of its intoxicating mysteries. To enjoy each and every day. To learn each and every day, beginning with “knowing where you are” and to connect and compare that “local knowledge” all the way out into and among all of those ineffable stars. It is from this simple, holistic, epistemic core that I learned not only how best to listen to others, but to use what I heard and observed and lived with them to be helpful, which is to say, simply, to help others learn how best to tell their own stories.

I read in the opposite direction of writing, in reverse, which means that today’s entry relates to yesterday’s. I realize that parts of the story, now slipped into the past, reflect an uncertain future. I see history enfold as I unravel it in parts, “struggling against the winds of progress” that blow toward the present (Peterson, 2010, p. 63). Scrolling down the page, I look at older entries with anticipation, tracing steps and putting my feet in backward footprints. Clever titles mark phases of treatment; periods denote moments of self-reflection; joy and anxiety; pain and pleasure.

Bud’s tone changes and other people echo back, their responses laced with gratitude and amazement. There are the regulars, people who comment frequently, others who just started following and don’t shy away from saying so, and people who have been following all along but have said very little. Some are active, some are passive, but everyone contributes to the story, taking the journey together, with Bud. Each time reading I find myself “there” with them—somewhere in cyberspace or Cancerland—where things move at their own pace:

In Cancerland there are surreal clocks that serve different purposes and they run on their own good time. Think Salvadore Dali clocks melting in the desert. There is the Big Clock that counts the remaining days of my life and whose final readout is just out of sight. There are smaller clocks—digital, analog, sundial—that measure out days and nights in eating rituals and medications, walks and naps, or that serve as monitors for routine body functions that are no longer necessarily routine.

I check the digital clock in the corner of the screen. A ticker, of sorts, keeping track of progress. When and how I read posts is up to me, but “where” I am when I read Bud’s blog is not a matter of time or place—Cancerland, as far as I’m concerned, is somewhere between a state of mind and a slight of hand, where movement is less a matter of mobility than it is a habit of the heart. I read at my own pace, on my own device, in my spare time. I read in places normally reserved for other activities—like learning, or sleeping, or cooking. Being guarded by the dull, silver back of my computer or phone, a stoic look on my face does little justice to the story. But when I read and touch the screen, moving the words on the page, the story moves me, changing the way I feel and how I experience everything else:

You know how when something unfamiliar enters your vision—say a yellow Volkswagen—you then see more of them? The same is true with language. An unfamiliar term—say pancreatic cancer—one day enters your everyday conversation and then, for no reason I can name, it serves as a strange attractor, a kind of linguistic magnet, that draws into your conversational sphere that same term, plus everything else that is associated with it. In no time you become knowledgeable about the world of yellow Volkswagens or pancreatic cancer in ways you never before imagined.

I pause to open a browser window. On YouTube, I search for a video clip by Bill Hicks—the “outlaw” stand-up comedian who died of pancreatic cancer in 1994. Although Bill’s brand of dark humor is making a comeback with comics like Marc Maron and Louis C. K., he died well before his time. In one of his more intimate moments with the audience, he repeats, again and again, that life is “just a ride”—“just a ride,” he says, and someday—someday soon—it will come to an end. Better not take it too seriously. Better not worry too much. “Ever notice that we always kill those good guys who try and tell us that?” He has a point:

Listen: You and I know that this life we all are living is very much a “one day at a time” deal. The rest—for all of us—is illusion. So for me and for you the best way through this detour just outside of Cancerland but in full sight of it is to remain focused clearly on the here and now, open up the great gift of the present, and enjoy—and I mean really enjoy—the ride.

I read Bud’s voice into the text, which comes through articulate, jovial, sharp and confident; like an Uncle talking to a nephew. He’s candid—unafraid to be direct. Sometimes more direct than I want, but that’s forgivable. To some degree, so am I. Neither of us skips the details:

If you discount some brutal wear and tear on some of my internal organs (tumor on my pancreas, lesions on the liver) spine (tumor outside pushing in, plus a thin fracture at T8 that causes the radiating back pain); and pesky cancer spots along the lower shoulder blades; a few side effects from the chemo poisoning and extreme radiation heat (chemo brain; neuropathy in feet, ankles, and hands; changes to my taste buds; minor sores in the mouth; weight loss and then weight gain and now weight loss again), I may walk with a cane and avoid using knives in the kitchen, but I’m still a pretty good case of what the late great southern novelist Barry Hannah once called “insistin’ on existin’.” And I plan to get even better. That line too is meant to be at least a little funny. A little. Come on.

In fact, it’s my voice mediating his that I hear as I read. I try to fashion my imagination with the sound of a personality I’ve only ever known through text—not familiar, by any means, but not unfamiliar, either. I meet Bud there, “fully attentive” I can “hear a voice speaking from the text . . . with an ‘indivisible wholeness’” (Kramer, 2003, p. 61). My thoughts fill with “dialogic overtones” that can be heard, but not just expressed (Bakhtin, 1986, p. 92). There’s no clear-cut boundary between voices but the spirit of the text itself—the breath between me, Bud, and others. The story is grounded in a sense of humor that’s different but similar to my own. When I laugh, the story becomes my own:

“It’s kind of like being in a twisted Monty Python film,” I say. “What did he die of?” (I use by best British accent). “Oh, he had terminal cancer but it was the Advil that killed him.”

The story is the thing—not completely therapeutic and not just diary-writing or journaling, either (boyd, 2006). Maybe not “just a ride,” I think. It takes work. Written work, prepared by someone who’s mastered their craft, poised and polished for publication. Personal work, oriented toward others on different stages of their life, turned toward the present. Political work, motivated to do something good—to get the most out of each day, stay mindful of the larger universe, and be grateful for loved ones. Not a job—and not just something to do in spare time, either—but a calling that ties the one to the many and individual experience to a larger community. The story is the thing—“morally inseparable from his or her life” (Bellah, Madsen, Sullivan, Swidler, & Tipton, 1985, p. 66). As a blog, it resonates from the keyboard through the screen, hailing me, calling me to make it my own.

That’s what storytelling does and blogging is good for. It blurs the line “between subject positions in the story and subject positions outside the story” (Peterson, 2010, p. 69). That means that Bud, me, and everyone else following along are both narrators and characters of a “big story” made up of smaller stories that “tap[s] into the deep well of the self and extract[s] its innermost dimensions” (Freeman, 2007, p. 157). Everybody interacts—not in “real” time, but in their own time—telling or listening from inside or outside, attached and detached as they open and close their hearts; a shared experience, unique to each person who finds their own stake in the story. Following along, they share a commitment to a “community of memory,” remembering where the journey began as they hope for a better future (Bellah et al., 1985, pp. 152-153). “Memory unifies and destroys the multiplicity of existence. It makes the other the same; it makes the outside the inside; the many, the one” (Esposito, 2010, p. 59). People gesture together, in “action at a distance,” their bodies behind the screen as they reach out in expression through keyboards and mice (Peterson, 2010, p. 73). In their own way and their own time—left to their own devices—hearts and minds grow intimate at a distance:

I know I’m still working out this “end-of-life” narrative, and if you are reading along you are working it out with me, and maybe there’s a simple answer and maybe there isn’t, but in the meantime let’s agree to live as we have, as we always have lived and worked and loved, because one big thing I know is true, one thing I’ve learned so far on this sudden turn into and trek across Cancerland, is that giving up on who we are is the surest way to shorten the journey.

As I read I improvise, hearing voices and seeing images turning thoughts into the scenery behind a field of imagination. There’s “dripping clocks,” “yellow Volkswagens,” “giant bunnies” and “haboobs,” “puppy dogs,” “giant lasers,” and “a cool metal moose.” All subjects of posts made one day at a time, turned into metaphors that capture a deeper meaning, carrying with them a lesson, new understanding, or purpose. The end-of-life is a stage where things play out with no script: improvisational and driven by the possibility of cure on one hand—composed and restrained by diagnosis on the other. The story is somewhere between the now of possibility and the then of certainty. “Then” of course is the end of the story—an end that, sure enough, will come. Death is built into everyone’s story as the ultimate telos—the gripping conclusion. Most people fear it. They “rejoice that it is ‘the next guy, not me’” (Kübler-Ross, 1997, p. 28) who gets shot with the arrow, slips into the sea, or valiantly rides off into the sunset. As I read, I wonder what it’s like not to be able to think that way:

One result is that we have so far mostly triumphed over despair, depression, anger, railing against the unfairness of life, and etc., replacing but not entirely erasing those negatives with a profound gratitude for what we have together and have lived together and will live together as long as we can. Even though I would be a big liar if I said I wasn’t worried about the way my personal narrative will end, I can accept—we have to accept—that one fine day my final sentence too will be interrupted, probably before I reach the period I had in mind.

There’s a storytelling game that improv actors play called “string of pearls” where the audience provides the beginning and the end of a story. Repeating the intro and conclusion over and over, the actors come up with the middle parts until the whole thing is complete. The audience follows along and shares the responsibility of making it a good story with their laughter. Their response is part of the process. Creatively, everyone discovers how it comes together, knowing from the start how it’s going to end. In the same way, every post Bud makes is a new part of the story—a new pearl for the string—adding a bit about what happens between the beginning and the end-of-life. Writing over the empty space fills the gap between now and then, bridging the distance between him and his audience:

Cancer was and continues to be the rude interruption (Art Bochner’s apt term for it) in our lives but to see or to understand this year as only a rude interruption fails to accept the part of this year that also has been a gift. That gift was all about answering with our lives this one key question: how best to spend the rest of our lives together by living fully one day a time?

He tells the story “bit by bit,” opening possibilities for speaking through the silences of everyday conversation familiar to so many who suffer from terminal illness (Couser, 1997). There’s a “collaboration-driven ethos” (Bacon, 2009, p. 3) about blogging as people follow along, tell about, listen to, live with, and make sense of the details. Private experiences are shared in a public space. It’s a “heterotopia” somewhere outside the norms of everyday conversation, bringing together the many places folks find themselves in as they read and write, do both, or neither. Somewhere in the network of relations between myself and everyone else—somewhere in the weird, dense network—I make contact with others, reflecting as a community (Foucault, 1986), gathered around the text and joining in a paradox, most certainly alone but undeniably together. Contexts collapse as we all resign to the tropes of the story:

And it’s not just the humor that is useful in countering the silence associated with cancer. It’s the ability to make fun of the grip that my old fear of death had on my life. By no longer fearing to talk about it, or to be around others who suffer from it, I gain voice where there was only silence.

Living while dying is a paradox, not a problem. “As long as a paradox is treated as a problem, it can never be dissolved” (Bohm, 1996, p. 73) because a person caught in a paradox “will inevitably fall into self-deception, aimed at the creation of illusions that appear to relieve the pain resulting from the attempt to go on with self-contradiction” (p. 77). There is no illusion to the story—no contradiction. The end is already in place—death is certain—and the paradox is addressed, seen for what it is—or better yet, for the problem that it isn’t—with free flowing honest thought about it. On Bud’s blog someone speaks, someone listens, and I think about what it means to embrace death as a part of life:

Until now, I have feared cancer in much the same way as characters in Harry Potter novels fear “he who must not be named.” For me, just saying the word “cancer” was an invitation to an unspeakable evil to enter my life, and so it was a word that was better left unspoken.

Any stage of life could be the end stage. Reading about life means reading about death, no matter how I frame it. One is the source of the other—a “double fear” that pushes everyone into a community of strangers, with a common obligation to overcome morbid inevitability (Esposito, 2010). Living and dying, I find comfort in compensation, sharing my life with others. I transfer my fears, burdening and unburdening myself and others, leaving my mark on the world by the actions that I take. Together I live in the service of others, seeming to overcome the odds, no longer “overwhelmed by [my] loneliness and separation and negated by the very burden of [my] own life” (Becker, 1973, p. 158).

Death, as a part of life, brings into focus those sacrifices I make to life’s preservation—the ones that immunize me from realizing the risk of living with a full awareness of its end. The “productive relation between preservation and sacrifice” (Esposito, 2010, p. 42) moves me toward others. I organize and exchange ideas. I shake hands and trade places. I write posts and make comments. I overlook the uncertainty of the future, taking advantage of the present, and the story I live follows the story I tell myself about myself in the presence of others I can’t see. “Human agency embodied in the Self is always mediated by an efficacy embodied in the Other” (Lanigan, 2010, p. 124). When stories come together, people come together. The possibility of death becomes an opportunity to live; a reason to be grateful, happy, and lucky; a reason to recognize everyone else; a chance to give thanks in exchange for what’s already been taken; not merely a fated outcome of a terminal existence:

I believe that narratives have trajectories. In their most ordinary guise, narratives begin in conflict and move through a series of events toward some resolution or ending. So, too, do the stories of our lives. Perhaps more important, the way we tell our stories has a direct impact on how they turn out. So much so that narrative medicine is now an accepted part of patient therapy.

A friend once told me that when she was diagnosed with cancer, there was a strange sense of comfort that came over her because “at least I knew what was wrong,” she said. The diagnosis gave her an agenda—a treatment plan with expected outcomes and recommendations. Anger set in when she’d think about leaving her friends and family behind to take care of everything in her absence. She described the pain from treatment as a simultaneous burning and freezing under her skin. She had countless tales about living with chemo brain, other people’s reactions to her diagnosis, and the challenge of coping with the side effects of long-term prescriptions and annual check-ups. She didn’t want to be defined by her illness after she’d gone into remission. “Honestly,” she said, “there is more to me than the fact that I had cancer.” I couldn’t completely understand at first, but now, being with Bud, I have an idea:

While this disease is no longer abstract we do not allow it to define our lives. We live with cancer. I take the treatments, swallow the meds, wear the fanny pack, suffer the tiredness and discomfort, and spend time in a clinic hooked up to machines sharing experiences and telling stories.

Stories about illness—my friend’s, Bud’s, others’—provide clues to the mystery of what I might do if I were in their situation. I’m anxiously aware of my own strengths and weaknesses, as well as my own willingness to confront darker realities that someday—perhaps even someday soon—might mean being diagnosed with something. There is a sense of hypervigilance that comes over me as I read, turning me toward the inevitability of everyday life coming to an end. That end could very well include a terminal illness. I can never know what role I might play in my own end-of-life story, but I wonder; I wonder what it would be like; I try to wish it away but the thoughts linger. It’s a nervous kind of introspection—a wonder that makes it hard to talk to others without wearing my heart on my sleeve. The limits to empathy and the fear of the unknown become surprisingly clear when I contemplate the dark possibility that the light at the end of the tunnel may be a shade of a different color than I imagine it is. The look on my face gives reality away and part of me wants to stop reading:

Here’s the thing: Chemo is a four-letter profanity masked as a five-letter friend. No one likes it, not in the Clinic or on Facebook. We fear it. We tolerate it because it promises a longer life and in most cases that I’ve witnessed a longer quality of life. But to achieve that desired result requires opening your veins to a poison regime that seizes control of your body and mind, unleashes an army of silent killers inside of you, and sometimes can be very unpleasant afterward, for you and for those around you, for days at time. And, with a cancer such as mine, in the end you die. Those are the facts.

Together, on Bud’s blog, folks collaborate to make sense of an uncertain puzzle. When the experience of life is cut into pieces—scattered about in canceled trips, prolonged treatments, side effects, and lack of sleep—it becomes clear that living is a larger project. Blogging at the end-of-life is a group effort to discover what makes life worth living. Each post is in itself “equipment for living” (Burke, 1976), figures of speech where the motive is to understand the active nature of death in life. People write to live, together, reconstructing the puzzle piece by piece:

Fate may well be a story we tell and when it is used to account for falling in love, or why we take in a stray animal, or who we become in this life, perhaps the better metric for evaluating it is not whether it carries the weight of a laboratory truth but instead, as the narrative theorist Walter Fisher puts it, does it “hang together” as a story and does it “ring true?” Which is to say does it work for us? Does it help us make sense of our lives?

All stories, and lives for that matter, entail some sort of quest for making sense of purpose in the world, searching for meaning in life, or exploring the essence of virtue and morality (McIntyre, 1984; Taylor, 1989). In a dialogue at the end-of-life, that quest is confirmed in the journey itself as the spirit of the conversation comes into form—as a blog comment, Facebook post, lunch table conversation, class discussion, conference program, academic paper, or memorializing publication. All are versions of the story that narrate lessons lived as lessons learned. People embody conversation as they take up their own agenda, giving others a glimpse of their own story and Bud’s, gesturing for others to join in. As they follow along, they hang together.

Others add and subtract from the story as essential players in its drama but they’re never completely cognizant of the actual roles they play for the Other. Bud tells his story with openness, grace, and dignity, trusting in those he can’t see—and in some cases, will never see. He meets them on the blog, through the text, turned-toward at a distance, turned away from the separation, solitude, and self-preoccupation seemingly “built-in” to digital technology use (Turkle, 2011) and terminal illness (Couser, 1997). Blogging at the end-of-life is an enterprise of intimate solitude; through the web, people reach each other, pulling each other “out of the death throes of dread” (Becker, 1973, p. 258) and into a living text:

So tonight, and every day and night, let’s celebrate that twinkle, let’s celebrate life. For it is in our celebrations that life itself is justly rewarded, our connection to each other honored, and our miraculous lives become truly blessed.

Conversation carries on in a stream of conscious awareness about treatment, existence, and death itself; about what it’s like to be a “Chemosabe” and sit in the “Room of Orange Chairs,” to engage in an ongoing search for “The Big It,” to contemplate what will happen when it’s time for “The Great Whoosh,” and to cope with the maladies of “Big Pharma.” In a “second language” (Bellah et al., 1985, p. 154), Bud transcends the symbolic confines of his world and his conditions, giving back to the community a grammar of experience that orders and codes the practical realities or “new normal” of cancer treatment, the politics of being ill in society, and inquiries into the afterlife. His story is ours, confirmed in our overt, conscious, unconscious, and symbolic responses to it (Leary, 1957)—a clever and evocative “expansion of experience, towards more life” (Becker, 1973, p. 263):

Chemosabe. So now you know, too. It’s a great word, isn’t it? A great rhetorical invention that reveals a creative contribution to our shared culture, to our shared belief about positive attitude. Stories and humor are important to fighting this disease by living as fully and as well as we can inside and outside of our clinic community. We may not outlive our cancer, most of us won’t, but we can learn from each other and maybe even leave something memorable behind.

Of course, language has its limits—it only “communicates the particular linguistic being of things” (Benjamin, 2012, p. 234), not how they may actually be. The story reveals the uncertainty that comes from confronting a bald reality that I and most others take for granted: that my life is unique and that it has a particular significance outside of my own “finite province of meaning” (Berger & Luckmann, 1967), that I’m resigned to others’ experience just as much as I am to my own, that I’ll live forever as others carry on my quest well after I’m gone, or simply that I’ll be remembered. Coming to grips with my own mortality is difficult not because these things aren’t true, but because to fully realize them I have to suspend my belief in them, humoring the dark possibility that tomorrow, or the next day—or perhaps even today—I’ll be gone and none of my desires will matter. Casting off the illusion of immortality opens me to a universe of possibilities, vulnerable to changes of heart and mind, no longer protected by the story of myself that I’ve garnered my whole life—the one where I’m the hero who defeats death; where I transfer my power to others through my work, my love, and my faith; the one without a diagnosis.

At times, there just isn’t the language to explain “what it’s like” to live at the end—not because Bud’s posts are inauthentic or disingenuous stories for an interfaced, rather than face-to-face, audience; but because understanding takes empathy. Turning toward others, reading the blog, and putting myself in Bud’s shoes tests my humility more than my intelligence. Genuine dialogue lays between me and others, in the “relational grace” that “arises from, generates, and supports genuine interhuman meetings” (Kramer, 2003, p. 162). Blogging at the end-of-life means facing the terror of the beyond—the one that’s there between us—beyond our computer screens, beyond our total understanding, beyond the limits of living. It means letting myself “be healed and to be whole, through heroic self-expansion in the other” (Becker, 1973, p. 157):

Imagine that you are me. Full-bodied me. Post chemo-treatment me, which is to say the full-bodied me that I become every other week after a thorough poisoning. Imagine that you wake up and find that your full-bodied me has become a cockroach. No, that was Kafka. Sorry. But there are days when I’d gladly trade for cockroach. Poisons don’t kill them, either. But, no.

I look for ways to cope with the tension that comes from acknowledging poor decisions I’ve made in my life: times I’ve been careless, or abandoned my inhibitions for the immediate satisfaction of pleasure; times I had one more drink, decided to smoke that last cigarette; times when I knew better. Personal experience is a double edged sword that never seems to stop swinging. I can’t escape decades of fast food, lack of exercise, or all of the questionable substances I ingested in college. What I’ve done is what I’ve done, without question:

“Doc, how long do I have?” is not a very good question to ask if you truly want an answer. There is never one answer to that question about “how long.” And any answer you might conjure up, calculate, or guess at is not simple. It can’t be. The one simple answer you do have is that you simply have cancer. I can name its Stage (in my case, Stage 4); I can learn to understand CA-19/9 markers (although these markers are not always accurate for any one individual); I can look at and analyze CT-scans, bone scans, PET scans, and xrays; I can talk about treatment options and try new and different ways of beating back the rogue proteins and reducing tumors and the rest of it; but there is no certainty to this damned disease other than this one: I have cancer. Oh, and that it is going to kill me one of these days. It’s enough to make you rent a smaller house.

Uncertainty is itself a foreboding consequence of modern living. Every time I rub my chest, feel my neck, or tongue the roof of my mouth I look for something new, something out of place, something that shouldn’t be there; I look in a mirror, finding inconsistencies in my skin, feeling a sharp, cold warning shot of dread shoot up my spine. It disappears, gone, and I try to calm my nerves. A freckle . . . a scar . . . a cold sore . . . “Just your imagination,” I tell myself.

Of course, I don’t have cancer—my health isn’t a problem right now. I’m “one of the lucky ones” who doesn’t get sick, doesn’t go to the doctor—doesn’t need to and won’t waste the money; or maybe I just don’t want bad news. The more I read the more I worry; the more I think about my habits—what I eat, what I drink, where I live, how much sleep I get, how much stress I manage on a daily basis. I dream up phantom symptoms, drenching my imagination in paranoia that comes from tapping into the potential of my own mortality. Making contact with others through stories of illness opens a window that overlooks the possibility of a more full life, but at the same time, I see in that window a reflection that unveils the darker, uncanny reality. How death comes isn’t something that I can choose, nor is it something I can control:

This doesn’t mean I ignore or discount or turn away from the negative news. It means I don’t dwell on it. I don’t give into it. And I don’t define who I am by it. Look: I know where my story is headed and I have a pretty good idea on how it ends. But today, I’m still well enough to enjoy the awe and all of life, and to work on improving it both here and—if the weird science part of the story is correct—maybe also in the afterlife.

The age old image that there’s a “light at the end of the tunnel” doesn’t necessarily mean it’s angelic; it’s more like light that lines the rows of movie theaters, illuminating moments of meeting between people “looking outward together in the same direction” (Saint-Exupery, 1939, p. 215). Bud’s blog exposes those moments in slices of time, shedding light on the fact that living while dying can mean making new friends, taking on new roles in the lives of others, and helping them find poise and comfort as they take a seat between certainty and uncertainty. In the end, “People create the reality they need in order to discover themselves” (Becker, 1973, p. 158). When they meet through the text, on the blog, they do it together. “There is no comradeship except through union in the same high effort” (Saint-Exupery, 1939, p. 215):

If I die tomorrow afternoon or six months from now or a year from now or whatever, we wouldn’t change a thing about living our lives as we now live them, nor would we alter our commitment to live this way and this well together for as long as we can. Why would we? Why would anyone? What I hope for and have worked for is a better world . . . and I don’t intend to stop working for that more perfect world just because I am probably not long for living in it. Neither should you.

Bud’s story isn’t just about life and death; it is life and death. It’s my story, his story, and our story all the same. As a part of that story, I share the one thing that all people have in common, “seeing in the other person the self-transcending life process” (Becker, 1973, p. 157) that provides some sense of security. Blogging is a practical way of coping with the inescapable paradox of living while dying—an environment of fear which is, undoubtedly, exacerbated by modern technology. Through the blog, I read with the story at a pace that matches the “acceleration of reality” (Virilio, 2012, p. 34). I experience the end of another’s life with hypervigilance. Preoccupied with deadlines, headline news, status updates, newsfeeds, and notifications, the technology at my discretion occupies me, trips me up, and throws me back on my heels. It’s a constant struggle between falling behind, running late, and staying ahead of the curve. Bud’s blog opens a space that gives me pause in all of that to salvage a few moments for myself; I’m filled by the words of others; I “lose [my] isolation and keep it at the same time” (Becker, 1973, p. 155). I make room for stories that make the strange familiar:

A rich and meaningful life is one in which we contribute to others and accept with gratitude what they give back to us, help them achieve understandings, goals, and pleasure in their lives and in so doing see clearly how such cooperation allows us to achieve our own. It is a relational life lesson and perhaps one of life’s most important lessons.

Community means sharing and sharing means community. It’s a social formation without origin, sustained by a human obligation to gather in fear of death’s consequence (Esposito, 2010). Sharing Bud’s story, I expose the “vital lie” (Becker, 1973) that life really is—the story I tell myself about myself that makes me a hero in my own eyes, able to overcome anxiety, deny the terror of death, and go on living in spite of its menacing inevitability. I realize for myself that “it’s just a ride,” but it’s not one I take alone. Alone together—intimate at a distance—we cover for each other and share with a community, transferring hope and faith as we stare into the abyss of the unknown, “trembling on the brink of oblivion—which is at the same time the brink of infinity” (p. 91). Through the text I discover a vulnerability that, in between Now and Then, Self and Other, brings the story to life:

Yet I know that this death scene scenario-setting is pure hubris and also unnecessary. I can no more control the end-of-life than I controlled life. Fortunately for me, I was never much into control. What I have always been about is the lived experience, the resulting story, and the knowledge that much in our lives is about recognizing and coping with ambiguity until it isn’t ambiguous anymore. At that point in this imagined “end-of-life” scenario, I just close my eyes and “go with it.” I don’t even know what to call it, but lately “the Great Whoosh!” keeps popping into my head. And, for some reason, that language makes me smile.

Blogging at the end-of-life is no way to answer impossible questions. But thinking about what it means to live while dying—being part of that story—opens me to the intimate possibility that the most any of us can do is create conditions for living that acknowledge death, instead of deny it. I have my own calling and my own followers. I have my own story to share. At a distance—through the blog—I see others like me getting a glimpse of the end-of-life, and they gesture for me to respond:

***

About to turn in for the night, I grab my cell phone off the ground where it’s charging. My old roommate sent me a text about an hour ago that I didn’t notice until just now:

“Goodall passed away this morning, huh? Sorry, man.”

The words jab at my stomach, knocking the wind out of me for a brief moment. I find my breath and shake my head, exhaling, turning around, and falling on the bed.

“Jesus,” I say, exacerbated, “Bud Goodall died.”

My girlfriend sits up, struck by my abruptness. I can’t believe how sudden it happened. I’m not sure how to respond, but I know that feeling in my chest—a reflex to jump up and stop something bad from happening. It’s too late, though. It’s done. I shut my eyes to fall asleep and spend some time thinking about Bud. My first thought is that I’m grateful I got the chance to talk to him about my paper.

That was only four days ago, I think.

When I wake up in the morning, it’s like it never happened. I eat breakfast, get showered, and pack my bags to get ready for the long drive home. I say goodbye to my brother, the kids, and the animals, not sure when I’ll see them again. I’m never sure of how to say “goodbye” and “thank you” in any way that does justice to the gratitude I feel for the people I love. It’s embarrassing, considering that I write about death and teach classes about love and communication, but I’ve come to expect it. I pull away from the house, as usual, wishing I knew better.

When I pull up to a drive-through for a bagel and coffee, the conversation with my girlfriend wanders into reflections about the trip we’re about to complete. We try to tease out how each other felt about the other’s families, having met them for the first time. I scan my memory over the past few days thinking about what we’ve done and where we’ve been and suddenly, in the midst of a sentence, I remember Bud.

I stay in the car as she heads inside to buy a souvenir mug. With a spare minute, I decide to check the blog, imagining that his wife has posted something. First, I notice a number of emails from colleagues who’ve known that I’ve been working closely with his blog for the past few months. They each express their condolences and I feel a strange upwelling of appreciation; in the moment, though, I’m not sure if what I feel is loss—I’m not sure if it should be loss considering that I didn’t really know Bud. I knew his words and my version of his voice—and the affect his journey had on me. It’s a voice I’ve grown fond of and think about often and his posts have always pushed me to question what was important in my life. Following Bud has helped me to realize what’s good about the life I’m living despite my inability to express it. Searching for that voice, trying to reconnect somehow, I don’t find it. It isn’t there. In its place is an image of the man himself—the picture from the homepage of his blog. He looks back at me with a clever grin, as if to say “That’s it! Hope you were listening! The rest is for you to find out for yourself.”

For the first time since I heard what happened, I feel a sinking feeling and my eyes well up. I feel open up to a world of emotion I’ve kept closed for a long time. This trip has meant coping with the reality of being absent in the lives of my family and friends. Since I’ve moved so far away, there just hasn’t been much time. I regret not getting the most out of myself for them, ashamed that I didn’t know better to tell them that I love them. Withholding seems ridiculous.

Maybe I wasn’t really listening? I must have missed something. Maybe I haven’t learned anything, I think.

Except for the birds outside the car, there’s silence as I read his wife’s words:

We were so blessed to have had the time we did. Our lives have been forever changed by the past year. Our little family had so many conversations, talked about so many important things over the past fourteen months and a myriad of small things that, at the time seemed so insignificant, but down the road will add to our loving memory of Bud as husband, father, and friend.

As the car door opens I put my phone away. My girlfriend gets in and I smile, asking about the mug in her hand, trying to change my own subject. She says that they didn’t have the one she wanted, so she settled for a large mouth porcelain coffee cup with the word “Ohio” scripted on the side in scarlet and gray. “Something’s better than nothing,” she says, nonchalantly, as we pull into the road.

“Something is better than nothing.” I say.

Hours go by. We trade off driving responsibilities each time we pass a state line. I forge through readings for the upcoming semester and take advantage of spots between mountains where I find cell service long enough to check my email. Each time I get online, I hold myself back from the blog. Finally, at a gas station in Georgia, I sit alone in the passenger seat and finish reading the final post. I long for someone to share mixed emotions with; someone who can speak my muddled language; someone who followed Bud and knew him the way that I did.

Back on the road, we cross the Florida state line. I stare back at the image in my mind—a mental projection of a man I wanted to know better. I can’t stop from thinking back to an email Bud and I shared—one of the only times we got in touch. He responded to my paper, offering suggestions with wonderful words of wisdom and compliments about the story. In my memory I can’t make out the beginning or the middle, but the end of the message is still clear:

OK. So that’s it. I hope my comments are useful. But thanks again for taking the time to read my blog and to think about it. That’s the best a writer can hope for. Well, that and a few million dollars in sales . . . LOL!

I think about all of the emails from colleagues, all of the work I’ve done—all of the reading, writing, annotating, collecting, coding, copying, pasting, presenting, and talking to Bud’s colleagues about his life. Despite all of it, I don’t know how to act. How should I feel about the loss of a person I didn’t really know? What am I supposed to do? Are the feelings genuine? Should I be ashamed? Have my experiences really been intimate? Or is “virtual” conversation just an illusion—a figment of my imagination? Are all of us digital natives just fooling ourselves? I look at my girlfriend as she sleeps without answers.

Nearing Tampa, we pass familiar landmarks and signs, getting down to the last miles of the trip. In my mind, I repeat the paper title over and over to myself, following the rhythm of the road; as if repeating the words will reveal some kernel of truth, some overlooked detail buried in my mind. I want insight and I want to feel resolved—something to assure me that what I’ve experienced hasn’t just been a delusion. Staring up into the first red light for hours I realize that Following Bud is not just a metaphor for reading a blog; following Bud was a way of being present in a conversation about a person’s life if, for no other reason, than to carry it forward.

That, I think, is the best a writer can hope for.