MODULE 2. PORTRAYING PATIENTS

2.5 Family accounts revisited

In the first module of this course we highlighted the importance of hearing from people who have direct experience of an issue. People with personal experience can provide crucial insights into differences between what they experience and what is represented in the media. But families do far more than this, they are active constructors of accounts, both their own in everyday conversation (or research interviews) and the ones they contribute to in the media. They are not just the passive subjects of media coverage, but the active negotiators or initiators of accounts. Family members also sometimes literally become authors with stories they publish themselves in memoire forms.

Family accounts can be treated as a transparent ‘window’ onto people’s experiences, but they can also be examined as a way of framing and articulating a viewpoint. When any of us talk about our experiences we are involved in editing, identifying a focus and highlighting some aspects over others. We tell ‘stories’ – this doesn’t mean they are ‘made up’, but it does mean they are constructed and crafted. Such crafting is explicitly reflected upon by authors who write memories about caring for loved ones in ‘disorders of consciousness’ (a category that includes coma and the vegetative state). You can find interesting accounts from authors such as Akhil Sharma (who won the PEN/Hemingway award for his novel, “An Obedient Father”). He went on to write a powerful ‘autobiographical novel’ about his childhood growing up with a severely brain injured brother : “Family Life”. There is a fascinating interview with him in The Guardian here.

Other key books by family members include: Cathy Rentzenbrink’s account of  what happened to her, and her whole family, in: “The Last Act of Love” and Lu Spinney’s (2016) book “Beyond the High Blue Air: A Memoir”. In writing book length accounts authors talk about celebrating their family member’s life and legacy, defending the meaning of their current existence, or right not to be sustained in their condition; demonstrating their love and commitment, fighting to ensure ‘never again’ for future patients.

Lu Spinney, for example, reflects:

“To discuss my son Miles’s situation with anybody other than family or closest friends felt like a betrayal of his privacy; it was too intensely private to share. And now I’ve written a book about it….By writing about the extraordinary world Miles now inhabited, I could bear witness to his suffering and to the suffering of the thousands of people in his situation. And, so important to us as a family, I could reclaim his identity and pay tribute to the man he was before his accident.” (https://www.independent.co.uk/arts-entertainment/books/features/beyond-the-high-blue-air-by-lu-spinney-why-i-wrote-a-book-about-watching-the-deterioration-of-my-son-a7056331.html)

Lu Spinney also talks about how a family can work together on an account: “Releasing the book has been a strange process for me and for my other three children, Will, Claudia and Marina. …Their support during the writing process was remarkable too. In many ways it was a collaborative venture. They read and edited every word; it was essential that they concurred with everything I wrote”

You can also find analyses of the narratives and literary devices used in such storytelling written by academics. (See Optional Activity below looking closely as the Chilean writer, Isabel Allende’s  memoire about her daughter)

Activity, additional option, engaging with academic critique of Allende's memoire, and examining literary narrative and 'voice'
(Estimated time 3 hrs)

This optional extra will be of interest to people with a particular interest in medical humanities or literary studies.

  1. Read “Paula” by the renown Chilean writer, Isabel Allende, well-known for her novels such as “The House of the Spirits (La casa de los espíritus, 1982) and City of the Beasts (La ciudad de las bestias, 2002). Her book, “Paula” is a memoire after her 28 year-old daughter, Paula, fell into a coma in 1991. This book was written by her bedside, combining accounts of turbulent political events in Chile with the experience of a mother as she watches over her sick child.
  2. Read  Hall, A (2014) article: “Representing chronic disorders of consciousness: voice in Isabel Allende’s Paula”  in the journal: Literature and Medicine. This article approaches the memoire from a medical humanities perspective “to consider the wider significance of literary writing as a space in which the recently created medical category of “disorders of consciousness” can be explored through personal perspectives” and looks at how the writer uses “inventive narrative forms to explore the potential, and the limits, of therapeutic modes of writing and their ability to give voice to a silenced patient.”
  3. Consider the following questions: How does Allende articulate her own and her daughter’s experience and voice, how does this representation authored by a skilled writer with direct experience of coma contrast with many mainstream cultural representations, including other novels? How does Hall’s analysis of the memoire engage with Allende’s account and what does this add to your understanding of the book and to your thinking about different ways of approaching accounts of personal experience?