Literature and Medicine II

Women in the Medical Profession: Personal Narratives

Blogging the Pain: Grief in the Time of the Internet

by Bärbel Höttges, Johannes Gutenberg-University of Mainz, Germany

1 On August 31, 2008, a 12-year-old boy named Keeghan died from a brain tumor in Washington, D.C. The boy’s death caused a wave of sympathy from hundreds of people all around the world, not because Keeghan had been a public figure in any way, but because his mother, Sharon Barry, had documented Keeghan’s fight against cancer in an online diary, a so-called blog, which had attracted more and more readers since its inauguration in 2006. Barry’s webpage is just one blog out of many dealing with illness and death. More and more people have started to publish their experiences with cancer and other diseases online, and many of these webpages have gathered a notable number of regular followers. At first glance, virtual grief narratives simply seem to be a variant form of printed grief narratives, which also have become increasingly popular over the last few decades. A closer look reveals, however, that blogs do not only reinvent the genre of the grief narrative but also reflect a web-based redefinition of (auto)biographical writing as such.

Grief and Writing

2 Grief writing is not a new phenomenon. From Anne Bradstreet’s autobiographically inspired poetry on the death of her grandchildren to Joan Didion’s The Year of Magical Thinking, the subject of illness, suffering, and death has been transformed into literature over and over again. The personal encounter with illness, caretaking, and dying, it seems, can be a trigger of literary activity, not because grief is experienced as a creative high, but rather because writing can apparently help the mourner to come to terms with the feelings of loss and despair. Psychologically, writing fulfills two important functions in the process of mourning. First, it can help to “[keep] the deceased person alive socially and culturally through the narration of his or her life and death” (Klugman 169). The influence of the deceased is not annihilated by his or her death, and the written words preserve his or her life and protect it from dissolution and the destructive forces of obliteration. Secondly, grief narratives contain an educational potential, as they teach both the writer and the reader the wisdom that can be extracted from the experience of caregiving, dying, and grief (cf. Klugman 169). As a result, grief narratives almost always contain lessons about the human condition, and they often insistently uncover and illustrate the factors and forces that really matter in life.

3 The potential of grief narratives to turn mourning into knowledge and a sense of thankfulness is closely connected to the act of writing itself because writing can be a force realigning the writer with the world. This healing capacity of writing becomes evident once the destructive consequences of sickness and death are considered. Fatal diseases constitute a disruption of life, not only for the patients but also for those caring and mourning for them. Pain, both in a physical and a psychological sense, can unhinge the world. Things no longer are the way they used to be, and the natural order of things collapses. In pain, the medical anthropologist Byron Good explains, inner and outer time—durée and cosmic time to use Alfred Schutz’s terminology—no longer match: Time caves in. Past and present lose their order. Pain slows personal time, while outer time speeds by and is lost. [...] [T]he world of pain [...] cannot be sustained by language. It is a world threatened by dissolution. Space and time are overwhelmed by pain, and the private world not only loses its relation to the world in which others live, its very organizing dimensions begin to break down. Pain threatens to unmake the world, and in turn to subvert the self. (126; cf. Schutz 214-18) These observations, Good maintains, also apply to those in acute mourning. In grief, the world loses structure and coherence as well, and the mourner experiences a sense of alienation: “For the mourner, the world also appears unfamiliar; people are strange, the landscape unnatural, movement stops midstream. The mourner has an acute awareness of the conventionality of the objects we live among; nature appears alien” (130-31).

4 This breakdown of a mourner’s world—the “lifeworld” or Lebenswelt as the philosopher Edmund Husserl calls it (108)—is closely related to a breakdown of the self. The person’s sense of self changes with the death of what the medical anthropologist Craig Klugman calls a “relational anchor” (174-75)—a relative or close friend, whose existence shapes and defines one’s identity, behavior, and self-perception. The death of such a person forces the mourner “to reassess his or her self-identity” (Klugman 174-75) since existing models of selfhood can no longer be maintained: With the loss of the individual who gave a person that specific relational aspect of identity, the person must rewrite the story of the self. The self that was a parent before the death of a child is no longer a parent in the same way after the child’s death. Thus the person must write a story of a new self as the parent of a deceased child or as a person who has no child. (Klugman 154)

5 Grief writing is a strategy that can help the mourner to overcome both the breakdown of the self and the sense of alienation caused by the death of a relational anchor. This healing potential of grief writing is connected to the restoration of language. Pain, as Elaine Scarry writes in her book The Body in Pain: The Making and Unmaking of the World, is not only “world-destroying” (29), it also shatters language (cf. 5): “Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language” (4). Indeed, “[p]hysical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned” (4). These observations also apply to intense and acute psychological pain—grief—which also resists language and articulates itself in cries, screams, and sobs instead. Attempts to “invent linguistics structures that will reach and accommodate this area of experience normally so inaccessible to language” (6), then, can only be made retroactively, once the wave of pain has subsided enough to allow access to language once more. If the attempt to describe the pain of grief, whether orally or in writing, is made, however, it can “reverse the de-objectifying work of pain by forcing pain itself into avenues of objectification” (6). Writing, thus, can restore language and reverse the unsharability of pain.

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6 The healing capacity of writing and storytelling is not limited to the restoration of language, however; writing can also reestablish the order of things. As illustrated above, intense grief is “world-destroying” and leads to a sense of alienation and to a breakdown of the self. Time and space are no longer perceived as coherent structures but rather as fragmented phenomena—things no longer make sense, and the self loses its power to perceive and explain itself and the world in a meaningful way. Storytelling can reverse this process. Turning a series of disconnected and chaotic experiences into narrative, the narrator can arrange hitherto unrelated events and emotions in a coherent order of before and after, cause and effect, self and world. Rather than being overwhelmed by experience, a narrator can interpret experience and create and identify symbols, themes, and structures that help him or her to reconstruct the world. Turning experience into story, in consequence, does not simply describe and mirror reality; rather, Roland Barthes points out, narration “ceaselessly substitutes meaning for the straightforward copy of the events recounted” (119). Narrative, thus, produces meaning, not because it rewrites or willfully distorts reality, but because it extracts patterns from a seemingly chaotic accumulation of experiences, as the philosopher Paul Ricoeur suggests: [T]he activity of narrating does not consist simply in adding episodes to another; it also constructs meaningful totalities out of scattered events. This aspect of the art of narrating is reflected, on the side of following a story, in the attempt to ‘grasp together’ successive events. The art of narrating, as well as the corresponding art of flowing a story, therefore require that we are able to extract a configuration from a succession. (278)

7 Drawing on Ricoeur’s theories, Byron Good uses the term narrativization to describe this organizing potential of storytelling in relation to stories of illness and pain. “Narrativization,” Good claims, “is a process of locating suffering in history, of placing events in a meaningful order in time. It also has the object of opening the future to a positive ending, of enabling the sufferer to imagine a means of overcoming adversity and the kinds of activities that would allow life experience to mirror the projected story” (128). Through the process of narrativization, thus, narrative “humanizes time and action” (Klugman 145) and facilitates the realignment of biographical discontinuities (cf. Becker 97; Rubinstein 259; Gee 11).

8 This healing potential of narrativization can also affect and restore the narrator’s self after the loss of a relational anchor. Telling a grief narrative, Craig Klugman notes, “often helps the narrator come to a new understanding of himself or herself and arranges the pieces of the puzzle in such a way that life can be reconstructed” (176). In writing or telling, then, mourners cannot only tell the story of the deceased, they can also rewrite their own stories and redefine themselves and their roles in community and family life.

9 The self, in consequence, shapes and is shaped by the act of writing (cf. Allister 14). The often experienced need to write and to talk about grief and illness may be connected to this inherent potential of narratives to restore the self and the world after a loss. Writing as such will certainly not miraculously dissolve the pain of mourning; it can, however, be part of the healing process, and it can shape and influence that process as well.

Printed Grief: Doris Lund’s Eric

10 One of the most popular grief narratives of the last few decades is Doris Lund’s Eric, in which Lund describes her seventeen-year-old son’s battle with leukemia. First printed in 1974, Lund’s narrative was translated into twenty different languages, turned into a TV movie, and republished in various forms and editions (the narrative was included in the Reader’s Digest Condensed Books series, for example, and portions have appeared in Good Housekeeping or Parents’ Magazine). In 1989, Lund added an additional afterword, in which she comments on her own narrative and describes how both the treatment of leukemia and her life have changed since the publication of Eric.

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11 From a literary critic’s point of view, Lund’s narrative is a relational autobiography. This term was originally introduced by Susan Stanford Friedman in 1985 to describe the differences between self-centered male autobiography and community-oriented life-writing published by women (cf. Smith and Watson 201). Friedman argues that women’s “awareness of group identity as it intersects with individual identity is pervasive. Instead of seeing themselves as solely unique, women often explore their sense of shared identity with other women, an aspect of identification that exists in tension with a sense of their own uniqueness” (44). In How Our Lives Become Stories (1999), Paul John Eakin convincingly illustrates that this sense of a relational identity is by no means restricted to female writers, but rather a feature which characterizes male and female autobiographical writing alike, but which often has been overlooked in the past in the works of male authors (55-58; cf. Smith and Watson 201-02).

12 This shift in autobiographical criticism from the autonomous, self-sufficient self to a self that develops and defines itself in relation to others does not only redefine traditional genre categories—after all, relational autobiographies blur the line between biographical and autobiographical writing (cf. Eakin 58; Couser 156)—it also offers a new theoretical basis for the analysis of grief narratives. If, as critics such as Eakin maintain, the self defines itself in relation to others, the loss of such a “relational anchor” (Klugman) profoundly disturbs and uproots the world of the self. Grief narratives, in consequence, cannot only be defined by their topic—as narratives dealing with death and grief—but also as narratives that try to re-root the self in a new relational network.

13 Doris Lund’s autobiographical account is such a narrative, which does not only recount and interpret a son’s illness and death from a mother’s perspective, but also depicts the hesitant reconstruction of a mother’s self after her son’s death. As most illness and grief narratives, Lund’s story begins with the first symptoms of Eric’s disease, which develop suddenly and unexpectedly, and hit a young man overflowing with vitality, energy, and strength:

GOOD FRIENDS HAVE SAID, “But how did it begin? You must have seen it coming.” No one could have seen it coming. This had been a summer like many others. We live[d] in a small Connecticut town in a house just a block from the beach [...] [and] the front hall that September was, as usual, full of sand, mysterious towels that didn’t belong to us, and an assortment of swimming fins, soccer balls, and basketballs. [...] Eric, seventeen, was packed and ready to go off for his freshman year at the University of Connecticut. [...] One late afternoon as I went through the house watering the plants, I found Eric stretched out on the living room couch. I knew he’d been running earlier up at the high school track, yet there was something new in his languid sprawl that made me pause. It was rare to see Eric lying down. (1-2)

This scene, located at the very beginning of the story, illustrates the process of narrativization and the literary character of Lund’s account. Even though the narrative is organized chronologically, it is not a journal but a retrospective interpretation of past events. Retrospectively, the summer day described above is identified as the beginning of Eric’s disease. Even readers who do not know yet what the book is going to be about will not miss the literary cues that are given here—something is wrong with that seventeen-year-old boy, and this summer is going to be different from those that preceded it; readers will read the next pages with a sense of foreboding.

14 The difference between a journal entry and a retrospective account becomes evident in these lines. Back then on that summer’s day, Eric’s mother might have paused when she saw her son lying on the living room couch, but it did not, as she herself describes in her account, occur to her that her son was seriously sick. She blames his exhaustion on nervous excitement (“Tension, I thought. Going to College is a big jump” [2]) and the “hot and muggy” (3) weather instead. The beginning of Eric’s disease, in consequence, is visible only in retrospect, and while there were probably unnoticed symptoms before, Lund chooses this particular afternoon as the beginning of her story because her son’s exhaustion that day is the first event that she perceives as causally linked to Eric’s illness. Rather than a record of events, Lund thus offers a narrativization of events, and she uses literary strategies (tension, insinuation) to organize her experiences.

15 On the following pages, Lund further develops these narrative strategies. Rather than focusing on the progression of Eric’s disease and the moment of its diagnosis, for example, Lund interweaves these observations with descriptions of Eric and his past. Eric is introduced as a character—with a past and dreams, fears and flaws, strengths and ambitions—rather than as a son, whose familiar presence does not require further explanation, and Lund introduces the other family members in a similar manner. These narrative strategies are necessary to allow Lund’s readers to follow her account, of course, but they are also part of the process of narrativization, as they embed Eric’s story within a pattern of temporal, spatial, and causal coherence, and firmly locate him and his role within the network of his family.

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16 As illustrated in the previous section, narrativization does not only create a coherent pattern, it also creates meaning, and this attempt to “extract a configuration from a succession” (Ricoeur 278) is also part of Lund’s narrative. Lund does not only describe her son’s battle, she also uses his fight to discuss existential questions of life, death, and living, and her son increasingly becomes a symbol of a life lived to the fullest in spite of adversity and pain. This image is established right at the beginning of the narration, only a few weeks after Eric’s initial diagnosis. Both angry and heartbroken when her son stubbornly insists on going to a football game on a freezing cold and wet day “with antibiotic pills in one pocket of his black loden coat and leukemia pills in the other” (20), Lund suddenly realizes that Eric needs to live now, no matter the risk, if he wants to live at all: “I watched [Eric leave], and I was changed. In that moment I began to understand. Now might be all he would ever have. He had to life his life. And living meant running risks. [...] There was no longer any ‘sure.’ I accepted the terrible precariousness of his life from that moment. I let go and said, ‘Eric—live!” (21). Lund accepts at this point that, despite his condition, Eric is no longer a boy but a young man, who wants and needs to live his life independently and without restrictions. He refuses to accept his illness as a limitation and lives with and in spite of it.

17 This incredible will to live is an important theme of the narrative and helps Lund to reevaluate her son’s fate. Eric might have died young, but his life was full and complete nevertheless. Reflecting on her son’s early death, Lund writes: [Eric] saw the marvelous opportunities in minutes. One whole good day was a feast. [...] In spite of the fact that much of his youth had been spent fighting to live, the world was beautiful with possibility for Eric. And now I find it is more so for me. Eric’s death is not the end of joy. It’s somehow a chance for another start. I hear his favorite Chicago record still playing. “The Beginning.” (334) Eric’s life, these lines insist, was neither incomplete nor in vain. His death is indeed a beginning to Lund—she even uses imagery of labor and giving birth to describe his last hours (cf. 312, 323)—and she links this idea not only to her own life but also to that of others by embedding Eric’s individual fight within the larger context of the fight against cancer. Eric may have lost his battle, but his fight, the last sentence of Lund’s account assures us, helped others to win theirs: “And the day would surely come when Peter [a new leukemia patient on Eric’s former ward]—or someone—was going to walk out there cured, and not have to go back. We might not be around to see it. But we were connected just the same. And Eric would be part of that victory” (335).[1]The idea that Eric helped others to survive is further developed in the additional afterword, which Lund added to her narrative in 1989. After describing the increasingly successful treatment of leukemia in the 1970s and 80s, Lund refers to a conversation with one of Eric’s oncologists, Dr. Victor Grann, to link Eric to that success story: “‘Eric, and the young patients of his generation, made a tremendous contribution,’ Victor assured me. ‘We were able to tap them for all sorts of information, study our successes or failures, and make careful judgments about what to try next time’” (340).These lines clearly show that Lund does not only describe her son’s life, she interprets it—she extracts a configuration from a succession of events, to use Ricoeur’s terminology once more—and thereby provides her experiences and Eric’s fate with meaning and a sense of direction.

18 Lund’s narrative, however, does not only reestablish coherence, it is also a story about the slow and hesitant redefinition of a mother’s self. One of the major themes of Lund’s account is Eric’s growing independence. In spite of his sickness, Eric increasingly leaves his mother’s care. Only weeks after his initial diagnosis, for instance, he tells his mother not to cook for him any longer because he will be “out a lot” (22). He also asks her not to do his laundry or to clean his room, and he does not want her to call his doctor anymore: “It’s my problem. [...] I’ll let you know if there is anything you need to know” (22). A few weeks later, during his second round of Chemo, Eric insists on attending a few classes at one of the nearby colleges, and, during one of his later remissions, he moves out to study at the University of Connecticut as planned and is even picked for the University’s soccer team. A few months before his death, finally, Eric starts dating a young nurse named MaryLou, and the two of them develop a surprisingly mature relationship, which ends with Eric’s death in his girlfriend’s arms.

19 Lund insists that Eric himself is the driving force behind his growing wish for independence, but she repeatedly stresses her willingness to let him go and her approval of his choice as well. The theme here, accordingly, is not only Eric’s development but also that of his mother—Lund slowly leaves her role as a mother behind and finally even allows Eric’s girlfriend to take over the role of Eric’s most intimate partner when she leaves it to MaryLou to hold and embrace Eric in the moment of his death, even though his parents are present as well.

20 One might object here that Lund simply describes the things as she remembers them, but her choice to focus on Eric’s growing independence and her willingness to let him go—rather than on his medical condition or moments of dependence and intimacy between mother and son—implies a redefinition of Lund’s role as a mother as well. Back when her son was still alive, Lund was forced to let him go, both because Eric insisted on his independence and because cancer finally claimed his life. After his death, however, when she focuses on her own development and her approval of Eric’s decision, Lund not only retrospectively endorses Eric’s decision, but also redefines and rewrites her own role in Eric’s life; in her narrative, she lets him go and is once more in charge of both her narrative and her life.

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21 In her autobiographical account, Lund does thus not only tell her son’s story; she also redefines herself and her position after her son’s death, and she provides Eric’s short life with meaning and a sense of closure. Eric is, in consequence, not a narrative about grief but rather a story of how grief can be overcome. Lund’s decision to write and publish Eric’s story was probably not the only factor that contributed to this healing process; narrativization, however, certainly helped her to transform the experience of her son’s death into a story of life.

Virtual Grief: www.skeleigh.com

22 At a first glance, Sharon Barry’s blog www.skeleigh.com is very similar to Doris Lund’s Eric. This webpage, too, chronicles a son’s death and is written from the perspective of a mother. Like Eric, Barry’s son Keeghan spends much of his young life fighting, and he, too, refuses to give up and lives with and in spite of his illness. Sharon Barry documents the last two years of Keeghan’s life on an almost daily basis and complements her written descriptions with more than 400 pictures and some videos of her son and her family. Like a conventional grief narrative, Barry’s blog focuses on her sick and dying son, and her story does not only start with the first symptoms of Keeghan’s tumor but, like Lund’s account, also comes into being because of this disease. [2]At the bottom of the section “The Beginning,” Barry explains why she decided to start a blog focusing on her son’s condition: “On May 9th, I started this website as a way to keep friends and family notified of Keeghan’s progress. Little did I know it would turn into such an epic novel!”

23 Even though Barry’s blog resembles traditional printed grief narratives such as Doris Lund’s Eric, however, there are many considerable differences. From a literary critic’s point of view, blogs seem to be most closely connected to diaries. Like diaries, blogs are updated on a regular basis, and they resist the retroactive interpretation of events—the experiences of a day are discussed in connection to the past only, and an anticipatory interpretation of these experiences is impossible (cf. Smith and Watson 193; Culley 221). Fears and hopes may be directed toward the future, of course, but since these future-oriented elements can only be discussed as suspicions and expectations, the past is the only reliable interpretative basis for blogs and diaries alike.

24 A closer look reveals, however, that blogs are not like diaries or other forms of printed life writing. In contrast to most published diaries, for example, blogs are largely unedited. When published by the author, diaries are usually revised—uneventful or too private entries may be removed, passages may be shortened, and explanations and comments for the audience may be added. Blogs, by contrast, are published almost immediately, and this sense of immediacy clearly distinguishes them from the private seclusion of diaries. In addition, even if a diary is published unedited (as it is sometimes the case with posthumously published diaries), diaries follow the natural flow of events: they start at a certain date and move forward in a chronological order. Reading diaries is a linear activity in consequence since nothing interrupts the consecutive description of experience. Blogs, by contrast, are published simultaneously chronologically (as one and the same entry is to be read from top to bottom and follows a chronological order) and in reverse-chronological order (as the newest entry can be found at the top of the page). In addition, rather than linearly describing experience, blogs often work on several levels at once. Hyperlinks, for example, can connect the different sections of a webpage, and they can also incorporate other webpages, directing the reader to entirely new narratives and opening up alternative itineraries of reading. Moreover, the readers of a blog often create a collaborative text of their own in the webpage’s guestbook. This alternative text comments on the blog and sometimes extends it (hyperlinks, additional narratives, etc.), but it is, in turn, also often picked up and commented on by the blog’s author in his or her entries. This interactive structure also clearly distinguishes blogs from diaries or any other form of life writing.

25 Unimportant as they may seem, these differences between blogs and traditional forms of life writing are important because they redefine the narrative process. As illustrated in the previous sections, writing can help writers to deal with their grief because the process of telling a story in retrospect facilitates narrativization. Narrativization can reestablish coherence, and it can help the writer to interpret his or her own story and thereby to provide it with meaning. As the writing process in a blog is fragmented (separate updates covering a very limited amount of time) and directed from a limited point of view (no considerable temporal distance to the events described), narrativization is not—or only in a very limited way—possible in a blog.

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26 The difference between a traditional grief narrative and a grief blog can be seen in the two sections “The Beginning” and “The Journey” on Barry’s webpage. [3]Barry’s webpage is subdivided into eleven sections, which can be accessed via the site’s navigation menu. The first section entitled “The Journey” consists of entries ranging from May 9, 2006 to January 22, 2009 and documents Keeghan’s treatment, his death, and the time immediately following his death; one of the earlier entries (May 22, 2006) is written by Keeghan himself. While the section “The Journey” consists of almost daily updated short entries in reverse-chronological order, the second section entitled “The Beginning” offers a coherent narrative, which retrospectively describes the onset of Keeghan’s disease and which covers the time period between March 10, 2006 and May 9, 2006; this part of Barry’s webpage was added almost a year after Keeghan’s initial diagnosis and thus several months after her first blog entry. The section “Moving Forward” consists of single entries in reverse chronological order again. No longer updated on a daily basis, this section covers the time period between January 22, 2009 and the present and describes the Barry family’s life after Keeghan’s death. These three text sections are accompanied by a video page, a guestbook, a contact form, and five picture pages (four regular picture pages paralleling Barry’s written entries, and one page dedicated to a family trip to Ireland). The chapter “The Beginning” is actually not a blog but a coherent piece of writing without any subdivisions. Like Lund, Barry relies on literary strategies in this section, and she, too, uses her account to embed her son’s story within a pattern of temporal, spatial, and causal coherence: “Ok, I said a few weeks ago that I was going to do this and I just haven’t made myself follow through … but with the anniversary of Keeghan’s diagnosis coming up, I decided it needs to be done. So, how did this all start? Funnily enough, it started with a broken nose. Sort of.”

27 Barry goes on describing how Keeghan broke his nose at school in March 2006 and started to develop headaches several weeks later. Suspecting that his facial injury may not have healed properly, his physician ordered an MRI, which finally revealed that Keeghan was suffering from a brain tumor and that the situation was already life-threatening due to the tumor’s size and location. Without any warning or time to grasp the situation, Keeghan was transferred to a pediatric intensive care unit and finally flown out to Houston, where the tumor was surgically removed; two days later, the Barrys had to accept the fact that Keeghan’s brain tumor was malignant.

28 The narrative elements are quite visible in this section of Barry’s blog. First of all, Barry establishes order by giving both her account and Keeghan’s illness a clear starting point. Even more than in Lund’s account, this starting point is random since the broken nose is actually not related to the tumor at all. Retrospectively, however, the broken nose is the felt beginning of Keeghan’s illness, on the one hand because it finally leads to the discovery of the tumor, and on the other because Keeghan is brought into contact with the world of hospitals, sickness, and pain for the first time.

29 As Doris Lund, Sharon Barry also relies on stylistic devices such as tension and insinuation in her account. Everything she mentions in this section is driving at Keeghan’s (later) condition: Barry leaves out unimportant days and details and even comments on that choice (“Fast forward a few weeks …”), she uses bold print for emphasis, (“‘Mrs. Barry! Your son has a brain tumor’”), and she hints at later developments. (When she describes Keeghan telling the paramedics on his way to the airport that “he had never even had blood drawn until just a few days ago, and now look at everything he’d had done!” for example, Barry comments: “Little did he know, eh?”). Surprising and shocking as the events may have been at the time of Keeghan’s diagnosis, Barry’s text expects them, and integrates them into a coherent spatial, temporal, and causal order.

30 Moreover, Barry uses themes to structure her account and to provide her experiences with meaning. Humor, for example, is a very important element in Barry’s account, and rather than focusing on medical procedures and test results, Barry focuses on the jokes the family members share with each other in spite of Keeghan’s life threatening illness. Similarly, family support is a very important topic; Barry stresses the significance of her husband, her close relationship to Keeghan, and the unusually close and mature relationship between Keeghan and his sister Maxx. All these elements structure Barry’s account and clearly point to various sources of support. The situation may be dire, but Barry’s account in this section speaks of strength and confidence, and she is, in spite of everything, in charge of the situation.

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31 As Lund, Barry does not thus offer a report in the section “The Beginning” but rather a retrospective narrativization of events. This situation changes remarkable, however, as soon as Barry starts to blog about her experiences. Suddenly, things come unexpectedly, and Barry is no longer in control of the narrative. On December 27, 2007, three months after Keeghan had been considered cured after his first round of treatments and two days after the doctors started to suspect a relapse, Barry writes:

Very quick update. Keeghan had his spectroscopy scan yesterday, and the PET scan today. [...] I spoke with Keeghan’s oncologist briefly today. Honestly, the information that I got from him felt more like bullet statements than answers.

· spot larger

· enhances differently

· new tissue · will consider sending to Houston to M.D. Anderson if surgery necessary

· need to schedule follow-up appointment with neurosurgeon

So, we won’t have true answers until next week. [...] I won’t lie. I’m terrified. [...] My mind is fried just from all the “what if’s.”

Torn between desperation and hope, Barry’s language becomes monosyllabic. She no longer has the power to order and explain her experiences because she does not know their outcome yet; rather than writing her story, she seems to be a character of a story someone else is writing. In a blogged narrative, it seems, narrativization is not possible any longer—a period of a few days may be overlooked and structured, but since the narrative is always open-ended and dependent on an uncertain future, it can never achieve the same degree of closure, structure, and coherence as a text written in retrospect.

32 The concept of narrativization is thus no fruitful theoretical basis for the analysis of blogged narratives of illness and death. Instead, Byron Good suggests, Wolfgang Iser’s reader-response theory might offer a useful methodological approach. Focusing on oral illness narratives, Good notes: It is my contention that reader response theory has special relevance for our investigation of illness narratives. The narrators of most illness stories [...] are typically in the middle of a story. The narratives they produce are more akin to the “virtual text” of the reader of a story than the “actual” narrative text of a completed novel. They are stories that change as events unfold. They point to the future with both hope and anxiety, and they often maintain several provisional readings of the past and the present. (144) For both the reader of an unknown text and those trying to describe an ongoing experience, Good argues, the story is incomplete, and plot is “less a finished form or structure than an engagement with what has been told or read so far in relation to imagined outcomes that the story may bring” (145).

33 Byron Good, one must note here, is analyzing oral interviews from an anthropological perspective, and he interviewed patients who were suffering from chronic (but not life-threatening) diseases. These interviews were conducted as part of a research project, and Good respects his patient’s privacy by using pseudonyms rather than their real names, and he also only publishes short excerpts from his patient’s narratives rather than their complete stories. Even though Good speaks of “illness narratives” when he describes these interviews, the narratives he refers to have thus little in common with traditional forms of life writing. In spite of this anthropological interest, however, Good’s analysis is extremely interesting in connection to literary and narrative analyses of grief and illness blogs since blogs resemble Good’s interviews in one important aspect: in both cases, the narrating subject is still part of the story it tells.

34 This immediate perspective precludes narrativization and turns interview partners and bloggers alike into readers of their own stories. Like readers, both evaluate the past in light of an emerging present, and they both try to make sense of their situation using an available body of typical plots drawn from their cultural repertoire (cf. Good 146; 153). They are, to use Goods terms, “still actively engaged in ‘emplotting’ the condition from which they suffer” (146). Emplotment according to Good’s definition—“the activity of a reader or hearer of a story who engages imaginatively in making sense of the story” (144)—is similar to the process of narrativization as both activities try to make sense of a situation. In contrast to narrativization, however, emplotment tries to influence the outcome of a still open situation, as an unfinished text always offers multiple readings and perspectives and thus allows for different interpretations. As long as death has not set a definite end to a life, healing is thus still possible for those telling an illness narrative (and those in the middle of reading it), even if miracles are necessary.

35 While printed grief narratives talk about the past only and evaluate this past from the detached position of the present, both grief blogs and Good’s illness interviews are characterized by “a teleology, a sense that the story is going somewhere. The narratives are aimed not only at describing the origins of suffering, but at imaging its location and source and imagining a solution to the predicament” (Good 121). As long as the story is still incomplete, this sense of direction can provide the narrator’s story with meaning, and it can structure experiences and events in a similar way as the process of narrativization. “When the imagined outcome of the story fails to materialize, however, when suffering is not relieved [...] the self is threatened with dissolution” (Good 121).

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36 This dissolution of the self expectedly becomes evident in Barry’s narrative with Keeghan’s death, the point of no return, which once and for all destroys the future Barry is hoping for so desperately. During the first few days after Keeghan’s death, Barry’s entries are still long and flowing and, to a certain degree, characterized by a sense of thankfulness for all the support provided by family, friends, and unknown guestbook signers. Ten days after Keeghan’s death, however, grief directs and controls Barry’s account: 10 September 2008 – 10:15 How does it feel to “move on” with your life after your child dies? It sucks. [...] It hurts. So much. I want him here. I want to feel him in my arms. I want to hear him yell at the dog to stop laying [sic] on his feet. I want everything that I can’t have. The anger and grief expressed in these lines does not leave Barry’s blog; if anything, it gets stronger, and Barry is keenly aware of Keeghan’s absence and the meaningless rhetoric of comfort and support. Moreover, writing loses its meaning-providing potential, and Barry obviously cannot see any purpose in her blog any longer, either: 4 December 2008 This is (hopefully) going to be a quick, and somewhat final, update. After this, I am no longer going to be updating here unless it is with some big announcement (which I’m not expecting many of in the near future). [...] This journey hasn’t ended, and what is here on the site will remain here. But my updates are over, as they are no longer helpful to me in any way. [...] 28 December 2008 Nothing feels the same. I have received many emails from people in the past few weeks, and I hope that everyone can forgive me for not replying. It isn’t that I am ignoring you. I just can’t deal with it all right now—answering emails, talking on the phone, accepting words of comfort—it’s too much. I thank you for your kind words, all of you. But please understand that I am treading water here. I keep myself busy every day just to keep the breakdowns at bay. That doesn’t mean I don’t ever breakdown—I do. Every. Single. Day. [...] 24 February 2009 I never know how to start posts here anymore. [...] Sharing the highlights of everything that was Keeghan was such a joy. [...] [T]hat was my life raft. Getting it all out of my head kept me afloat. Also, I felt certain that keeping Keeghan’s story alive would somehow keep him alive. All of that is gone now. [...] [I]t is very rare right now for me to be able to write for any length of time without completely falling apart. [...] The pain of losing Keeghan has not lessened in any way over these six months. In fact, it has become so much worse. I think for those first few months we were all in shock. Numb. But now that the pain is being felt in its entirety, it’s [...] horrible. Crippling even. Therefore, I find myself thinking in bullet statements. [...] Even the way I think has been affected by the loss of Keeghan. [4]All passages quoted above are all part of longer entries, and there are several updates in between those entries as well.

37 In contrast to Lund’s narrative, which is the story of a mother’s coming to terms with her son’s death, Barry’s account is a story of unfiltered grief, and it is characterized by an acute sense of loss, which threatens to deconstruct both language and writer. These are not the sobs and shrieks Elaine Scarry describes in her study of torture victims; to a lesser degree, however, the pain of grief seems to make language similarly inaccessible, and the experience of grief implies the same “unsharability” that Scarry connects with physical pain (cf. 4). Without a certain distance to her own experiences, narrativization is thus not an available strategy for Barry, and rather than documenting a process of healing, Barry’s blog chronicles her growing sense of desperation. While both Lund and Barry describe a very similar situation, their narratives thus take different forms, leading to two very different stories.

Blogged Healing?

38 One might argue here that the main difference between Doris Lund’s Eric and Sharon Barry’s blog is time. Barry never stops writing (she even posts an entry a few hours after her son’s death), and her blog is a seismograph reflecting the slow and painful process of grief. The blog shows a writer who has not yet succeeded in redefining her position after the loss of an important relational anchor. Lund, by contrast, published her narrative approximately two years after her son’s death, which left her more time to deal with her loss and to come up with new perspectives. As illustrated above, Lund successfully redefined her role; this redefinition does not take away the pain of a grieving mother, but it provides her narrative with a sense of healing and acceptance, which Barry’s blog is (yet) lacking.

39 The difference between the two narratives, however, is not so much time as the process of writing and publishing. Even if Barry is going to come to terms with her son’s death at some point—and several of Barry’s more recent entries indicate that she will—her blog will never be similar to a conventional grief narrative as it will always be an open-ended report characterized by emplotment rather than narrativization. Blogs are, in consequence, not simply an alternative variant of printed forms of life writing differing from conventional (auto)biographies only as far as the mode of publication is concerned. As the comparison of Lund’s and Barry’s narratives reveals, the mode of publication fundamentally influences the writing process and thus the nature of the written text.

40 This difference, it seems, has been neglected for the last few years. In the past decades, most scholars have focused on content-related questions and the relation between self and world in their attempt to define and categorize different forms of life writing. One of the standard reference works on life writing, Sidonie Smith and Julia Watson’s Reading Autobiography, for example, lists fifty-two different genres of life narrative. The authors differentiate between autopathographies (autobiographical narratives dealing with disease and disability), ecobiographies (autobiographical texts in which authors define themselves in relation to nature), or captivity narratives (narratives told by [former] captives or hostages), for instance, but they do not mention blogs or other forms of virtual life writing (see Smith and Watson, 183-207). If web-based forms of life writing are considered at all, critics usually focus on the new technological possibilities of virtual writing (technological interactivity etc.) or on new forms of self-representation such as Second Life or social networking platforms such as Facebook. [5]For a discussion of social networking platforms, see, for example, Westlake and Papacharissi; for new forms of self-representation, new technological possibilities, and a discussion of privacy in online, see McNeill, Zalis, Killoran, Kennedy, and Sorapure.

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41 As the comparison of Barry’s and Lund’s narratives reveals, however, we do not have to examine completely new kinds of self-representation on the Internet in order to find new forms of expression. Blogs, even if they consist of nothing but written words, are based on a different mode of writing and publishing. Virtual and printed texts do not only differ in terms of their technical and formal preconditions—like an audio book and a printed book—but their different genesis decisively influences the way in which these two different forms of writing mediate experience. The writing process thus shapes a text as essentially as traditional narrative categories such as topic, imagery, or perspective. Blogs, therefore, do not just mirror familiar forms of writing on a computer screen, but they reinvent and redefine these forms, creating new stories and new narrative modes. This innovative potential of virtual forms of life writing has largely been ignored in the past; as the comparison between Lund’s and Barry’s narratives reveals, however, the Internet and its modes of expression certainly deserve further critical attention.

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Works Cited

Allister, Mark. Refiguring the Map of Sorrow: Nature Writing and Autobiography. Charlottesville: UP of Virginia, 2001.

Barry, Sharon. 25 June 2009 <http://www.skeleigh.com>.

Barthes, Roland. “Introduction to the Structural Analysis of Narratives.” Image-Music-Text. Essays selected and translated by Stephen Heath. London: Fontana Press, 1977. 79-124.

Becker, Gay. Disrupted Lives: How People Create Meaning in a Chaotic World. Berkeley: U of California P, 1997

Couser, G. Thomas. Recovering Bodies: Illness, Disability, and Life Writing. Madison: U of Wisconsin P, 1997.

Culley, Margo. “Introduction to A Day at a Time: Diary Literature of American Women from 1764 to the Present.” Women, Autobiography, Theory: A Reader. Ed. Sidonie Smith and Julia Watson. Madison: U of Wisconsin P, 1998, 217-21.

Eakin, Paul John. How Our Lives Become Stories: Making Selves. Ithaca, N.Y.: Cornell UP, 1999.

Friedman, Susan Stanford. “Women’s Autobiographical Selves: Theory and Practice.” The Private Self: Theory and Practice of Women’s Autobiographical Writings. Ed. Shari Benstock. Chapel Hill: U of North Carolina P, 1988. 34-62.

Gee, James Paul. “The Narrativization of Experience in the Oral Style.” Journal of Education 167.1 (1985): 9-35.

Good, Byron J. Medicine, Rationality, and Experience. Cambridge: Cambridge UP, 1994.

Husserl, Edmund. The Crisis of the European Sciences and Transcendental Phenomenology. 1936. Trans. David Carr. Evanston: Northwestern UP, 1970.

Kennedy, Helen. “Technobiography: Researching Lives, Online and Off.” Biography 26.1 (2003): 120-39.

Killoran, John B. “The Gnome in the Front Yard and Other public Figurations: Genres of Self-Presentations on Personal Home Pages.” Biography 26.1 (2003): 66-83.

Klugman, Craig. “Narrative Phenomenology: Exploring Stories of Griefand Dying.” Meaning in Suffering: Caring Practices in the Health Professions. Ed. Nancy E. Johnston and Alwilda Scholler-Jaquish. Madison: U of Wisconsin P, 2007. 144-85.

Lund, Doris. Eric. 1974. New York: Perennial, 2000.

McNeill, Laurie. “Teaching an Old Genre New Tricks: The Diary on the Internet.” Biography 26.1 ( 2003): 24-45.

Papacharissi, Zizi. “The Virtual Geographies of Social Networks: A Comparative Analysis of Facebook, LinkedIn and ASmallWorld.” New Media & Society 11.1-2 (2009): 199-220.

Ricoeur, Paul. Hermeneutics and the Human Sciences: Essays on Language, Action and Interpretation. Trans. John B. Thompson. Cambridge: Cambridge UP, 1981.

Rubinstein, Robert. “Narratives of Elder Parental Death: A Structural and Cultural Analysis.” Medical Anthropology Quarterly 9.2 (1995): 257-76.

Scarry, Elaine. The Body in Pain: The Making and Unmaking of the World. New York: Oxford UP, 1985.

Schutz, Alfred. “On Multiple Realities.” Collected Papers: Vol. I. The Problem of Social Reality. The Hague: Martinus Nijhoff, 1971. 207-59

Smith, Sidonie, and Julia Watson. Reading Autobiography: A Guide for Interpreting Life Narratives. Minneapolis: U of Minnesota P, 2001.

Sorapure, Madeleine. “Screening Moments, Scrolling Lives: Diary Writing on the Web.” Biography 26.1 (2003): 1-23.

Westlake, E. J. “Friend Me if You Facebook: Generation Y and Performative Surveillance.” TDR: The Drama Review: A Journal of Performance Studies 52.4 (2008): 21-40.

Zalis, Elayne. “At Home in Cyberspace: Staging Autobiographical Scenes.” Biography 26.1 (2003): 84-119.