This paper examines the way ambiguous grief related to terminal illness is mediated through a blog titled Glioblastology and via social media engagement with its content and author. Building from the psychology framework of ambiguous loss, this paper positions ambiguous grief as a salient lens through which to discover how users in need of coping spaces are engaging digital space as a medium for meaning making and coping during the diagnosis of a terminal illness.
BerlantL. (2011). Cruel Optimism.Duke University Press.
3.
BossP. (2009). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press.
4.
CouldryN. (2010). Why voice matters: Culture and politics after neoliberalism. Sage Publications.
5.
CouldryN. (2012). Media, society, world: Social theory and digital media practice. Polity.
6.
CvetkovichA. (2003). An archive of feelings: Trauma, sexuality, and lesbian public cultures. Duke Univ Press.
7.
De CerteauM. (1984). The practice of everyday life. California, University of California Press.
8.
EgnewT. R. (2009). Suffering, meaning, and healing: Challenges of contemporary medicine. The Annals of Family Medicine, 7(2), 170–175. https://doi.org/10.1370/afm.943
9.
EllcessorE.KirkpatrickB. (2017). Disability media studies. New York University Press.
10.
Endwell. (2021). ‘Illness questions what our lives are about and so thinking the stories we are forced to shift the narrative. We are forced to write and tell new stories.’ -@adamhaydenWatch Adam's story here: https://bit.ly/2Mdv0Pq. In: @ENDWELLPROJECT (ed.) 4:11 PM ed.
HallS.JhallyS. (1997). Representation & the media. Media Education Foundation.
13.
HaydenA. (2016). Glioblastology Philosophy, Illness, and Healthcare [Online]. Available: https://glioblastology.com/about/ (Accessed November 4 2021)
14.
HaydenA. (2020a). Finding myself in illness. Cancer Health. cancerhealth.com.
15.
HaydenA. (2020b). When COVID-19 Comes Home. Cancer Today.
16.
HaydenA. (2021a). Don't call it a comeback, I been here for years/I'm rockin’ my peers, puttin’ suckers in fear. My friends, it is @TheLizArmy! 11, count ‘em, 11 days post brain surgery. Clapping hands signClapping hands signClapping hands sign #btsm. In: @ADAMHAYDEN (ed.) 8:21 pm ed.
17.
HaydenA. (2021b). A friend with second recurrence. This one not responding to therapy (so far) It sucks Just because we learn to cope better doesn’t mean it sucks less. Know someone on either side of cancer treatment or their care partner? Send ‘em love. Never not a good time to show it. In: @ADAMHAYDEN (ed.) 5:46 pm ed.
HaydenA. (2022a). Cheers to all the friends who let us terminal cancer patients say some dark shit with a smile. You’re the real heroes. In: @ADAMHAYDEN (ed.) 9:17 pm ed.
HaydenA. (2022c). Monday's MRI scan … Stable! Great result, and we keep going! Thanks as always for the well wishes and love! Before my next scan, I'll turn 40, celebrate 12 years with @mrsadamhayden, and recognize 6 years post-diagnosis! Things we didn't know I'd live to see!✌?❤. In: @ADAMHAYDEN (ed.) 9:14 am ed.
23.
HaydenA. (2022e). This is overly simplified.I’m past prognosis and approaching 40. I’ve heard (and feel) opposing attitudes. Control health variables:⬇?? and ⬆??Or live it up! ‘You’re ‘terminal’ go for it!’I’m sure I’ll hear ‘moderation,’ but living this is existentially complica. In: @ADAMHAYDEN (ed.) 9:50 AM ed.
24.
Janoff-BulmanR. (1989). Assumptive worlds and the stress of traumatic events: Applications of the schema construct. Social Cognition, 7(2), 113–136. https://doi.org/10.1521/soco.1989.7.2.113
25.
MarkhamA. N. (2005). The methods, politics, and ethics of representation in online ethnography. In The SAGE handbook of qualitative research (pp. 793–820).
26.
McruerR. (2006). Crip theory: Cultural signs of queerness and disability. NYU Press.
27.
MilnerR. M. (2012). The world made meme: Discourse and identity in participatory media.University of Kansas.
28.
PapacharissiZ. (2015). Affective publics: Sentiment, technology, and politics. Oxford University Press.
29.
PattonM. Q. (2002). Qualitative Research & Evaluation Methods. California Sage Publications.
30.
@PROFCOLBYDAVIE (2021). And may I add, one sentence you wrote spoke directly to me today and helped in my ongoing struggle to fully live after my life partner has died. ‘Whatever it is that we face, we don’t need perfect clarity to take the next, best step.’. In: @PROFCOLBYDAVIE (ed.).
31.
PuarJ. K. (2017). The Right to Maim: Debility, Capacity, Disability. Duke University Press.
32.
RajabiS. (2018). Mediating possibility after suffering: Meaning making of the micro-political through digital media. https://repository.upenn.edu/entities/publication/401a9daf-be64-46d9-83dc-d419c6f1a135/full
33.
RajabiS. (2021). All my friends live in my computer: Trauma, tactical media, and meaning. Rutgers University Press.
34.
RaleyR. (2009). Tactical media. U of Minnesota Press.
35.
SantosL. (2022). You Can’t Always Want What You Like. The Happiness Lab. Pushkin.
36.
SiebersT. (2008).Disability theory. University of Michigan Press.
37.
SumialaJ. (2013). Media and Ritual: Death, Community and Everyday Life. Routledge.
