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carer stories

Book Review: Eros and Illness

13 Jun, 17 | by amcfarlane

Eros and Illness by David B. Morris, Cambridge: Harvard University Press, 2017, 368 pages, £31.95.

Review by George Derk, PhD (gtd2gu@virginia.edu)

With the provocative pairing in the title of his new book, David Morris sets himself the task of dramatically altering the perceived relation between these two terms. As he contends, there exists less of an opposition and more of an affinity between them than we are usually willing to admit. At times, they even seem like bedfellows rather than rivals: “eros and illness both usually send us under the bedcovers” (27). Professor Emeritus of English at the University of Virginia, Morris began his academic career focusing on eighteenth-century literature before turning his attention to the medical humanities. In some ways this new book is a follow-up to and an elaboration of a couple of his previous ones, including The Culture of Pain (1991) and Illness and Culture in the Postmodern Age (1998), but at least one significant difference sets this recent work apart from the rest. Morris draws from his personal experience as caregiver for his wife, Ruth, after she was diagnosed with early-onset Alzheimer’s. It is this model of care, where provider and patient are the most intimate of partners, that allows Morris to explore the neglected dimension of eros in illness.

Morris begins by developing a capacious interpretation of eros, one that cannot be reduced to sexual activity nor to the Roman equivalent of Cupid. He instead derives his understanding of the concept from both the French philosopher Georges Bataille and the Canadian poet Anne Carson, and while he carefully stipulates that eros resists any easy definition, the word that comes closest to naming it is desire. He proceeds with a thorough examination of desire in the context of health care—or what he calls “medical eros”—mostly through illness narratives and doctors’ memoirs. He occasionally supplements these primary texts with analysis of literature and the other arts, as when he discusses the waiting involved in caregiving as akin to the waiting depicted in Samuel Beckett’s most famous play, or as when he finds an affirmation of eros in a series of nude portraits that Amedeo Modigliani painted while suffering from a terminal illness in wartime Paris. What he eventually uncovers amounts to an alternative medical genealogy, a recovery of the ancient figure of Asklepios as the embodiment of the obscured tradition of eros in Western health care. For Morris, the dominant stature of the other ancient healer, Hippocrates, and what he represents—biomedicine, or what Morris terms “medical logos”—has resulted in a reduction of the pluralism of healing practices, inhibiting the effectiveness of treatment for chronic illness.

From a certain angle, the book falls into a recognizable pattern of decrying how science-based, data-driven medicine has lost sight of its core humanistic principles, which I suspect would prompt many health care professionals to respond that the realities and demands of the job only allow for so much empathy and compassion. However familiar Morris’s argument may sound, the frequency with which medical logos runs up against its own limits warrants reiteration. If medical eros seems like some New-Agey solution to the problems of modern health care, it does a lot more good than some of the other reactions, such as over-treatment, that occur when doctors confront uncertainty or a lack of options. Perhaps the more insightful and original contribution of this book, though, is less its appeal to humanize medicine and more its belief that anyone can learn how to care for those who fall ill. Indeed, as Morris suggests with his own transformation from English professor to fulltime caregiver, the innate capacity to provide humane care stems from the eros that one already bestows onto his or her loved ones. The relative absence of Ruth’s story further underscores that this book chronicles the experience of illness not from the perspective of the patient but from that of the caregiver, although at times the boundary blurs. Morris himself becomes a patient after suffering a heart attack, which he attributes to the stress of providing care and which he takes as an example of a “supradyadic effect,” or how one’s health is interdependent on the health of those in one’s social network.

The book, overall, reads like part Bildungsroman of a caregiver and part philosophical treatise on the nature of caregiving. Morris strives to preserve the desire that drew him to Ruth in the first place and sustained them through three decades of marriage. In the face of regret at not recognizing Ruth’s symptoms earlier, guilt for his irritability towards Ruth’s increasing debility, and, most of all, anguish at the terrible inverse logic of dementia (“she was fading emotionally, just when I felt in greatest need of her ordinarily loving expressiveness”), Morris maintains that eros doesn’t necessarily have to evaporate altogether and may actually serve as the greatest resource when medical logos has no answers (39). Along with the personal experiences that he relates, the case for eros is strongest when grounded in specific instances wherein biomedicine finds itself ill-equipped. Morris’s inclusion of the writings from people with non-normative identities—such as the African-American, lesbian poet Audre Lorde who claims in The Cancer Journals (1980) that the “love of women healed me”—proves particularly effective in this regard. Dwelling on the accounts from those at the margins testifies to the potential of medical eros to help remedy the imbalance of treatment for underserved communities. In addition to the benefits made available by eros, the cost of not acknowledging its contributions equates to an egregious oversight. Morris cites an estimate by the American Association of Retired Persons that within the U.S. 36-38 million family caregivers provide $350 billion (approximately £270 billion) in unpaid labor annually.

Yet counterexamples exist to raise questions about this book’s insistence, in its more unrestrained moments, on championing eros as a possible panacea. The anti-psychiatry movement, which Morris overlooks, would seem to embody many of the characteristics of medical eros. For all the necessary reforms that it has lead to, it has arguably been too successful in undermining biomedical treatments for psychiatric ailments. While the dismantling of mental health care results more directly from draconian cuts to funding than from this particular movement, the U.S. continues to live with the legacy of an impaired system of psychiatric care. That said, Morris anticipates an objection such as this by advocating for a balance between eros and logos. His goal, as he states it, is for biomedicine “to recognize eros and to deal with it—the good and the ill—mindfully” (13).

The principal testament to eros that Morris offers may ultimately be the fact that he managed to write this book. While caring for Ruth, Morris admits to feeling drained of his normal passion for writing: “I could write, but writing lacked all pleasure, joy, and desire” (251). As the examples curated by Morris attest to again and again, illness throws eros into disarray. One of the more telling instances in the book involves the poet Jane Kenyon, suffering from end-stage leukemia, who is reminded by her husband that the bed she lies on is the same site of their countless sessions of lovemaking over the years. This is the type of recognition that Morris prescribes, an awareness of how a bed, as object and symbol, stands for the underlying bridge between eros and illness. The challenge of the latter consists of finding new ways to realize the former. The strength of Eros and Illness resides in how Morris models the counteracting of illness by eros through his writing, eloquently giving voice to Ruth, who lost hers, and rediscovering his own in turn.

Book Review: Aliceheimer’s

5 Oct, 16 | by cquigley

978-0-271-07468-9lg

 

Aliceheimer’s. Alzheimer’s Through the Looking Glass

By Dana Walrath. Published by The Pennsylvania State University Press, 2016.

 

Reviewed by Dr Martina Zimmermann.

 

Dana Walrath’s Aliceheimer’s. Alzheimer’s Through the Looking Glass is the second graphic memoir by an adult child about her mother’s Alzheimer’s disease, after Sarah Leavitt’s Tangle. A Story About Alzheimer’s, My Mother, and Me (2012); a further contribution to the steadily growing body of dementia caregiver life-writing. The best-known representative of this body is surely John Bayley’s Iris: A Memoir of Iris Murdoch (1998) – given the account’s prominent filmic adaptation, its unceasing consideration in literary scholarship, its persistent presence in the lecture theatre and seminar room, and the countless citations other caregivers take from this text. For these caregivers, Bayley’s narrative has provided inspiration, and at times moral justification – especially for how they tell about the patient’s loss of self. Walrath foregoes reference to the experiences of other caregivers. Instead, she connects her account to Lewis Carroll’s Alice’s Adventures in Wonderland (1865) and Through the Looking Glass (1871). Allusion to Alice’s Adventures in caregiver narratives is not new: Cécile Huguenin made the connection in Alzheimer mon amour [Alzheimer my love] (2011) and Sally Magnusson in Where Memories Go. Why Dementia Changes Everything (2014). Both wife and daughter refer to being lost in an environment that resembles Carroll’s nonsense world, exposed to the nonsensical organisation of caregiving and lacking support from practicing clinicians. Walrath, however, maps her narrative onto Carroll’s story to depict the condition itself. In doing so, she offers an unexpected perspective on Alzheimer’s disease; she seemingly creates a new condition: Aliceheimer’s. Concurrently, Aliceheimer’s acknowledges that Alzheimer’s disease creates a new person, indelibly linked to the Alzheimer’s disease experience. Alice is no longer “her old self” – a “proud, hardworking career woman [who] had done all the cooking and cleaning for her family of five, without any outside help” (11). Having fallen down the rabbit hole, she now is “her new self” (27): Aliceheimer.

A pronounced feature of Alice’s dementia is disease-related hallucinations and fears, and Walrath dedicates a large part of her account to this aspect of her mother’s illness experience. This choice of presentation makes Walrath’s narrative unique. In fact, affective symptomatology, that is auditory hallucinations as well as ideas of jealousy, had been described by Alois Alzheimer in the landmark case of Auguste Deter in 1906. However, cognitive and histopathological features took priority in medico-scientific and healthcare descriptions of dementia patients in the first half of the twentieth century and beyond. And while the patient’s mind and psyche entered the literary arena much earlier and more explicitly (since the 1920s) as compared to when and how old-age psychiatrists and social medics began to take an interest in this area, they continue to remain absent from most caregiver accounts. Walrath describes some of her mother’s hallucinations, but more importantly, she gives them new meaning, depicting them as Alice’s space time travel and a special power (37). What happens under the spell of Alzheimer’s disease happens in wonderland. Mapping her mother’s experiences onto the adventures of Carroll’s character is a gambit that enables the caregiver to counter-narrate the patient’s social death and loss of self in a culture “where death is taboo, and aging is not celebrated” (47).

Walrath confirms what anthropologist Janelle Taylor explored in her prize-winning essay “On Recognition, Caring, and Dementia” (2008), namely that recognition is considered to be the “public threshold” (69). Specifically, the first thing Walrath is asked when her interlocutor learns that Alice has been placed in a nursing home is: “does she still recognize you?” (69) An anthropologist herself, Walrath asserts that “more than recognition of individuals and their social roles, it is recognition of intention and behavior that matters” (69). This insight is core to Walrath’s caregiving practice, as she assigns intention to Alice’s hallucination-caused behaviour – a strategy also pursued by Reeve Lindbergh in No More Words. A Journal of My Mother, Anne Morrow Lindbergh (2001). Lindbergh’s literary account of her mother’s dementia features among those we perceive of as particularly enabling because it seeks to identify the patient’s continued identity and self within dementia. Similarly, Walrath concedes that “there is loss with dementia, but what matters is how we approach our losses and our gains. Reframing dementia as a different way of being, as a window into another reality, lets people living in that state be our teachers – useful, true humans who contribute to our collective good, instead of scary zombies.” (4) This approach echoes that of other caregivers, like Arno Geiger in Der alte König in seinem Exil [The old king in his exile] (2011), Ruth Schäubli-Meyer in Alzheimer. Wie will ich noch leben – wie sterben [Alzheimer’s. How will I continue to live – how will I die?] (2010) or Cécile Huguenin, who depict their parent or partner as teachers. But in comparison to these caregivers Walrath does not give her mother her own narrative space. Aliceheimer’s remains Walrath’s account. And as such it reveals that a balance between continuity of identity for the patient as parent and continuity for the caregiver as child is not easily found – neither in the illness experience itself nor in an account thereof.

Walrath writes beautifully about how she creates continuity within and for her mother’s behaviour, how she discovers gain within loss. But we are only told about the “more benign hallucinations” (5) relating for example to the patient’s sundowning (35), not the difficult ones. We read about Alzheimer’s disease as “a time of healing and magic.” (4) But we are not told about the profound challenges of dementia caregiving. We gain such information only from the acknowledgements, where Walrath concedes that “[c]aring for Alice required a community […that] gave Alice space to be herself and to grow even through loss.” (71) Where are the caregiver burden and identity crisis of the child in this narrative? Are these challenges not explored in more detail, because we are expected to fill them in from our knowledge of the mainstream dementia narrative? I believe that the key to these questions is found in the narrative’s collage technique.

There is a clear compositional strategy in Aliceheimer’s: on the left the patchwork image of pages cut from Carroll’s text incorporated into Walrath’s own drawings and colouring; on the right Walrath’s written account in one-page long snippets and impressions. In a first instance, this arrangement gives the disease-inflicted, hallucination-provoked chaos a systematic structure. But more importantly, it enables Walrath to tell two different stories. The author encourages us to “[p]age through to feel the storyline as it exists in the drawings on their own” (5). But the collage depicts a truth on which the textual narrative – effectively like every Alzheimer’s disease memoir – remains silent: the patient’s complete disintegration and dissolution. The collage arrangement leaves space for the onlooker to imagine the full truth conveyed in Aliceheimer’s. In the end, Aliceheimer’s is Alzheimer’s: a disease of relentless loss and decline.

aliceslide1

Roughly a third of the account covers the time from when Alice is placed in what Walrath terms “memory care”. From the time of Alice’s placement the pictorial narrative tells an explicit story of decline, regression and involution, of what Walrath only once spells out in writing, namely that “with each passing day, Alice was becoming developmentally younger” (61). The collage images show Alice as a young bride, a school girl, in her babyhood; Alice’s eventual bodily and mental disintegration become clear from images depicting Alice in the immediate post-fertilisation phase with the zygote (a spiral cut from a page of Carroll’s text) surrounded by sperm cells (64), and another image reducing Alice to mere DNA (the cut-out text from Carroll’s narrative that links the molecule’s two strands together featuring key characters in Alice’s adventures [66]). Instead of telling about Alice’s disintegration in the nursing home in her written account on the right, Walrath now takes to peering through the looking glass in yet another way. She sets out to explore Alice’s past and describes her personality in the past. With this account, she can place the “old” Alice before the increasingly disintegrating Aliceheimer. Not only do photographs of the young Alice begin to replace Walrath’s drawn image of her mother. In this final third, some chapters extend over more than one page, indicating that the caregiver needs to tell more of the story than the image alone can or should tell. Where the narrative snippet spreads onto the next page, the accompanying image is repeated in magnified form, suggesting that eventually the caregiver’s story must replace the patient’s world. Walrath, indeed, depicts her mother as increasingly transparent early on (10-15) and – like other caregivers such as Elena De Dionigi in Prima di volare via. Quello che l’Alzheimer non ci può rubare [Before flying away. What Alzheimer’s cannot steal from us] (2012) – as flying away (18-22).

aliceslide2

Aliceheimer’s remains Walrath’s account also for the fact that it creates continuity for the daughter that reaches beyond her professional interests. In the first place, it tries to give meaning to the caregiving process, as the daughter now has to mother the mother, or as Walrath – mother of three boys herself – puts it: “I had always wanted a daughter” (57). Equally, Walrath describes the period of caregiving as a time when she “wanted to create a bond with my mother, to redo the past, and to fill the hole inside of me” (1). And as such, Aliceheimer’s also remains Walrath’s account when the narrative turns into the daughter’s search for the mother’s past as the story of her own origin; a past that will be forgotten with Alice’s memory loss; a past that harbours Alice’s as much as her daughter’s identity as Armenian. In this regard, Walrath’s narrative fits into the tradition of adult-child caregiver narratives that arose during the 1990s’ memory boom; narratives about a parent’s dementia whose forgetting becomes linked to the danger of an entire generation’s loss of collective memory about the trauma and fate of the Jewish people – if we think about Linda Grant’s Remind Me Who I Am, Again (1998) or Lisa Appignanesi’s Losing the Dead (1999). Like many caregivers before her Walrath becomes the “archivist”, not only of the mother’s memories, but an entire people’s history: she travels to Armenia to “make the missing pieces of our past into more than ideas” (61).

Peter Keating has described Carroll’s Alice as having “pioneered the new mood of freedom and exploratory play in children’s books”. Walrath’s narrative could be read as representing a new mood of freedom in how to deal with Alzheimer’s disease. It is a narrative about Alice’s different identities, views and truths of the world; a narrative showing that “[c]onflicting realities can coexist in a single image just as they do for people with dementia and their caregivers” (5). Walrath asserts that her mother “escapes the captivity of Alzheimer’s through story” (29). Also Walrath herself escapes the captivity of Alzheimer’s through story: the captivity of the medico-scientific and wider cultural narrative of decline, diminishment and loss. To my mind, Walrath’s reference to Carroll’s “Lobster Quadrille” (47) is most revealing. In this adventure, Carroll’s protagonist offers to tell her experiences on condition of not “going back to yesterday, because I was a different person then”. Living well with the patient comes down to living in the present moment – living within the world and experience of Aliceheimer. When this is not possible any longer, Walrath’s memory of her mother’s old self, Alice, will come to replace both Alice’s memory and Aliceheimer herself.

If this is the first Alzheimer’s disease narrative you pick up you will come away with the feeling of having read a kind of fairy story – about Alzheimer’s through the looking glass. If you read it against the last decade’s caregiver life-writing, you will see it fitting into how adult children increasingly assert their parent’s continued identity and self within dementia. Reading it in the context of nearly thirty years of Alzheimer’s disease life-writing, Aliceheimer’s appears original in its collage approach, and buoyant in its message of how to “bring back the humanity of a person with dementia” (5). But it also matches what has developed into a kind of prototype caregiver dementia narrative. It tells of biographical disruption; searches for continuity for both parent and child; aims at preserving collective memory; presents – as John Wiltshire has discussed in relation to John Bayley’s memoir – “the issues of identity which are implicit in all illness experience with particular acuteness”. Aliceheimer’s is a story about the possibility to find quality of life in dementia caregiving; the possibility to see Alzheimer’s disease as creating a new self, a self that can be lived with and written about up to the moment when we feel threatened in our own self.

 

 

The final review in this series – Alzheimer’s disease and graphic memoirs – will be Sarah Leavitt’s Tangles.

The first in the series – Alex Demetris’s Dad’s Not There Anymore – was posted here.

 

Related Reading

David M R Orr, Yugin Teo. Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change? Med Humanities 2015;41:2 8185.

Martina Zimmermann. Deliver us from evil: carer burden in Alzheimer’s disease. Med Humanities 2010;36:2 101107.

 

Book Review: Dad’s Not All There Anymore

26 Sep, 16 | by cquigley

 

This is the first of a series of comic book reviews on the theme of Dementia. Reviews of Sarah Leavitt’s Tangles and Dana Walrath’s Aliceheimer’s to follow.

 

Demetris Cover

 

Dad’s Not All There Anymore by Alex Demetris

 

Reviewed by Harriet Earle

 

As an academic, I have a love-hate relationship with Wikipedia. I tell my students to steer well clear and never to rely on it for anything but the most cursory glances at a subject. However, I will admit that I use it regularly (and, in the website’s defence, the references can often be very helpful). There is absolutely a place in academia – and in life – for Wikipedia’s accessible and easy synopses. It is likely that, were I to require information on Lewy Body Dementia (LBD), I would soon be typing it into my phone’s app. However, one central thing that is missing from Wikipedia is heart. An encyclopaedia is not meant to be an emotional and emotive document; it’s aim is to inform, not to evoke emotion. However, when one is talking about many topics, such as LBD, the basic definition (or even an exhaustive medical definition) does not give any space to the consideration of the experience of the condition.

This is where Alex Demetris’ comic Dad’s Not All There Anymore comes in. Demetris illustrates his father’s diagnosis and eventual move to a nursing home. Demetris’ book is devastating and heart-warming. He tells the story through the figure of John. When the narrative opens, we are visiting John’s father, Pete, in a nursing home. John speaks gently to two other elderly residents, one of whom is supine on the floor, before meeting his mother, Sue, in his father’s room. The chronology of Pete’s illness is told in flashback; we follow him from diagnosis with Parkinson’s in 2003, to the diagnosis of Lewy Body Dementia in 2007 and the progression of the illness until John barely recognises his father. The personal story is interspersed with carefully worded explanations of the condition, its genesis and development that are pitched perfectly for readers who are not medics. This is the true success of this comic – that Demetris is able to create a work in which his father’s unique story and the more generic definitions of LBD sit in conversation with each other. We are in no doubt that this is a personal story and that it is the individual nuanced experience of the disease that is the focus, while the medical information exists within the text as an informative touchstone for the non-medic reader.

Demetris’ artwork is both expressive and simple. Plain line drawings with very little excess details are highlighted by shades of yellow-green. In places, there is a flash of red. When Pete starts to hallucinate a small red-haired child, she lurks as a faded red and creepily expressionless figure; she is almost a ghost. In another instance, Pete asks John what he sees in the corner. John sees a rack of coats; Pete sees the bright, terrifying face of a clown, to the horror of the clown-phobic John. In curious contrast to the muted and gentle colouration, the panels themselves are crowded. Each page contains at least 6 closely-packed panels, each one filled with a bustling image, topped with a caption or bubble or both. There is a lot to take in – both image and text – and at times the effect can be overwhelming. Where to look? What to read first? I would not wish to suggest that that chaos engendered by the reading experience can come close to mimicking the full horror and disorientation of LBD but it may go some way to mimicking the mental upheaval of supporting a family member.

All comics artists have a style and in that style is a peculiar ‘something’ that stands out. For Demetris, it is his exquisite use of eyebrows to create expression. In my own research, I have written about the importance of the eye as a frame to govern the emotion of the face within the panel. Demetris’ characters have no eyes, only small representative dots, and so it is for the eyebrows to do the talking. It is impossible to overstate how expressive Demetris’ characters are, a feat that is particularly impressive, given the limited use of detail in their faces. In the visually congested panels, the clearly rendered eyebrows on each face guide the narrative and emphasise the humanity of the characters, in moments of both comedy and tragedy.

Ask most people to name something that terrifies them and they are likely to rank dementia high on that list. I imagine that watching a loved one battle with dementia is equally terrifying. In the carefully rendered faces of John and Sue, there is immeasurable warmth. Indeed, one of the most striking features of the plot of this comic is the seemingly unwavering devotion of both characters to Pete and their tremendous patience with him as the disease progresses. It is one thing to say of a sick family member “he doesn’t mean to be trying, he’s not well – I will not hold it against him” and quite another to live these words and embody them. Demetris is not telling just any story of LBD, he’s telling his father’s story. The personal nuances of the story are the central focus of the narrative and the most compelling part of it. Pete was a teacher and regularly admonished his son for using the word ‘innit’ (“Don’t say ‘innit’ – it’s bad English”). At the book’s close, there is a final glimpse of the old Pete and his grammar policing ways (“… shouldn’t say ‘innit’… bad English…”). LBD may have him on his knees but he is still there and it is to this that his family cling. This is the heart; this is what moves this text beyond the crisp, cold definitions offered by Wikipedia and other encyclopaediæ. Instead of receiving the bare facts, the reader receives an insight into the day-to-day experience of the disease and the ravages it brings to bear on the individual and those around them. Demetris has etched out a fine line between text book and autobiography and is walking it with skill, panache and immense heart.

 

Dad’s Not All There Anymore by Alex Demetris is available from Singing Dragon Publishers.

ISBN: 978-1-84905-709-7

Price: £7.99

 

Related Reading

David M R Orr, Yugin Teo. Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change? Med Humanities 2015;41:2 8185

Martina Zimmermann. Deliver us from evil: carer burden in Alzheimer’s disease. Med Humanities 2010;36:2 101107

The Screening Room: The Aftermath of Stroke

3 May, 16 | by cquigley

 

Building bridges: two films about self-discovery after stroke

Dr Khalid Ali

 

Two recent films portray the aftermaths of stroke from different viewpoints: that of a stroke survivor in My Beautiful Broken Brain (UK 2016, directed Lotje Sodderland and Sophie Anderson, currently showing on Netflix) and that of the daughter of a stroke survivor in You See Me (USA 2015, directed by Linda Brown, available from http://youseememovie.com/).

Linda Brown is a film maker and an Associate Professor at the University of Southern California (USC). After her father Stanley Brown had a stroke in 2004 at the age of 79, she decided to collate her filmed reflections on his stroke experience in a documentary film, You See Me. Another motivation for making the film was her strong desire to get to know her father better as a human being with a traumatic past and unfulfilled dreams. Using family home videos and interviews with her father, mother, and two sisters, she tells a poignant story of a family afflicted by stroke as well as long-hidden secrets. The blood clot that blocked the blood supply to her father’s brain (cerebellum) has affected him in many ways; his physical weaknesses, poor balance, stuttering speech were accompanied by significant behavioral changes characterized by frustration and outbursts of anger. In spite of Stanley’s determination to walk and communicate and restore his relationship with his family, his frequent paranoid delusions and verbal abuse put significant strain and pressure on everybody around him, particularly his long suffering wife. Documenting the turbulent and volatile family life for 12 years after Stanley’s stroke in film became a journey of self-discovery for Linda and her mother. Watching family home movies enabled them both to re-evaluate their relationship with Stanley, and to come to terms with their own uncertainties about his morbid and enigmatic pre-stroke personality. With poignant realism, Stanley’s death circumstances were honestly shared with the audience. However, ‘unexpected salvation and healing’ come in the guise of a never-before-seen family home video.

Following the film screening in several international film festivals, and after winning major awards, The American Heart and Stroke Association (AHSA) supported the film in public campaigns for its honest portrayal of life after stroke, in addition to caregiver burden in old age, domestic violence, and mental health awareness.

In My Beautiful Broken Brain, we see Lotje Sodderland, another film-maker, who had a massive haemorrhagic stroke at the age of 34. Following life-saving brain surgery, she begins to experience a bewildering and confusing reality; visual images are distorted, sounds are exaggerated – a surreal existence that reminds her of ‘the red room’ experience in Twin peaks, her beloved director David Lynch’s infamous TV series from 1990 (https://en.wikipedia.org/wiki/Twin_Peaks). With the help of another film maker, Sophie Anderson, the two embark on a journey of filming Lotje’s demanding speech therapy sessions, her isolating experience in a hospital rehabilitation unit, readjusting to life again, and joining a research study that involving trans-cranial magnetic stimulation for improving speech.

In her strong desire to turn her ordeal into a positive experience, Lotje and Sophie send a videotaped message to David Lynch (https://en.wikipedia.org/wiki/David_Lynch), sharing Lotje’s day-to-day attempts of ‘restoring her old self’. To their surprise, David Lynch replies, expressing his interest in Lotje’s video diaries, and ultimately joining as an executive producer for the film.

Telling her stroke experience as it is without sugar-coating, Lotje says: ‘My life was hijacked by therapists. I am now defined by my impairments’.  How much she scores on stroke-specific assessment scales becomes her daily pre-occupation. Lotje’s story and observations embody the sense of lack of control that many stroke patients experience both in hospital and after discharge. Stroke therapists as ‘dictators’ controlling the stroke survivors’ recovery, and the challenge for survivors moving towards a ‘reluctant democracy’ has been explored in a seminal article by Norris and Kilbride (1).

In spite of the harsh reality of life post-stroke, Lotje slowly discovers and comes to appreciate her hidden strength and her resilience as she reconnects with a new sense of self. The ethos of self-management post stroke is practiced on a daily basis by Lotje, a reminder of the visionary Bridges approach championed by Professor Fiona Jones in the UK (2).

You See Me and My Beautiful Broken Brain show us how living with, and embracing change after stroke can be the key for healing and liberation for both stroke survivors and their families.

 

References

  1. Norris M, Kilbride C. From dictatorship to a reluctant democracy: stroke therapists talking about self-management. Disabil Rehabil 2014; 36 (1): 32-8.
  2. Self-management – Bridges approach  http://www.bridgesselfmanagement.org.uk/

 

Address for correspondence: Dr Khalid Ali, Screening room editor, Khalid.ali@bsuh.nhs.uk

 

 

The Reading Room: A review of Marion Coutts’s ‘The Iceberg’

9 Jan, 15 | by cquigley

The Iceberg by Marion Coutts

Reviewed by Elizabeth Barry, Department of English and Comparative Literary Studies, University of Warwick

9781782393504

Marion Coutts’s 2014 memoir The Iceberg details the period covering her husband Tom Lubbock’s diagnosis with an aggressive brain tumour, the progress of his condition, and his death. Lubbock, art critic for The Independent newspaper, himself wrote a short memoir (Until Further Notice, I Am Alive) about his condition, and its progressive attack on his ability to speak and write. The Iceberg, then, is Coutts’s story, of her struggle to deal with the news of Lubbock’s condition, to communicate with him and help him to write, and to care both for Lubbock and their young son Ev. Eighteen months old at the time of the diagnosis, Ev bounces irrepressibly in and out of the narrative, both a solace and a terrible reminder of the future that Lubbock will not share.

This extraordinary work rejuvenates the cliché of being ‘unflinchingly honest’. Coutts does not flinch. Her style is measured and sober, her reflections a detached observation on her own pain and anger. There is no misery in this misery memoir. Into what precise genre, then, does this work fall? This seems an almost impertinent question—this is truth, it appears to us, impeccable in its clarity and honesty. The question matters, however, for the reader’s horizon of expectation. It is memoir, but shorn of a degree of narrative frame: the storytelling discourse. Coutts does not try to make sense of what is happening for us—there is no sense to be made—but gives such a lucid account of the experience and its shades of feeling that it teaches us far more than works with a more intrusive narrative shape. The work is in four sections, which cover Lubbock’s diagnosis and first surgery, the second surgery and progression of the illness, his hospitalization, move to a hospice and death, and finally a brief coda on the immediate aftermath. It is episodic in structure, but the chronology and facts of the medical biography are offered by dated ‘update’ letters, reproductions of those Coutts sent periodically to their friends. These provide, then, the frame for the story’s inherent uncertainties and shifts in feelings, balancing the more abstract passages where the experience is so huge, the change in circumstances so cataclysmic, that the categories of time and space themselves warp and threaten to eclipse the factual story. As Coutts observes at one point, “time is a material stream” (91) in this context. Attuned to the discourse of personal disclosures, medical and emotional, in this sort of life-writing, the reader can find the more philosophical reflections jarring at first, however penetrating they may be. But it becomes increasingly apparent that this jarring is precisely the point: Coutts’s means of approach to her situation (her capacity to understand it, her agency in the face of its exigencies) are damaged, as well as the reality itself.

 

Reading this account of brain disease and its effects brought to mind Catherine Malabou’s recent philosophical work, The New Wounded: From Neurosis to Brain Damage, which argues for the incompatibility of brain damage and narrative representation. Coutts reflects explicitly at one point on the brain’s plasticity, the nub of Malabou’s philosophical interest: “Plasticity. This is the environment we live in. It is volatile and dangerous” (171). Her memoir, without any excursus into theory, offers the lived experience of what Malabou posits as the “rupture of narrativity” (55) caused by brain damage. As Coutts writes on the first page of her book, Lubbock’s diagnosis “has the status of an event”, “a rupture with what went before: clean, complete” (1-2). Malabou describes the “absence of sense” that seems to attend brain injury, which “challenge[s] us to think pure, senseless danger as an unexpected event—incompatible with the possibility of being fantasized. One does not fantasize a brain injury; one cannot even represent it” (9). The sparseness and economy of Coutts’s memoir is likely her own stylistic predisposition, but it also speaks to the idea that the experience of brain disease, even at one remove, is both ineffably strange, and resolutely literal.

Often these works stand in a relation of contrast. Coutts’s work acts as a riposte to Malabou’s construction of the brain injured subject as a victim of unthinkable and unspeakable psychic pain, who is unrecognizably transformed. Lubbock’s diagnosis is an event, a rupture, but there is one continuity. The family keeps its shape and character: “Our unit stands” (2). Lubbock is not an isolated individual, a victim, but part of an extended organism that can weather collectively what might destroy its members divided. The family challenges Malabou’s downbeat reflections, providing a salutary example of the idea of a ‘new normal’. This, a concept prevalent in qualitative approaches to oncology and in particular to brain cancer (Schmer (2008) and Cavers (2012)), sees a changed normality elaborated by patient and caregivers which accommodates the disease, neither denying it nor allowing it completely to displace the existing world of the family or its environment. This couple’s ‘new normal’ (worked at tirelessly and resourcefully by Coutts herself) preserves key tenets of their former life, principally the pleasures of food, friendship and a communion with the outdoors, and the satisfactions of work. Lubbock is also far from a wounded being by nature or choice. His experience becomes literally unspeakable as he loses language, but he is lucid (and cheerful) within these limitations until the very end, thought seemingly preserved even when language is severely compromised. He faces the ordeal not only with fortitude but a kind of exhilaration: this is the world, the world is precious, we are together and we are still here. As Coutts reflects relatively late in the narrative, Lubbock’s condition, even in robbing him as a writer of his defining personal and professional capacity, does not change his personality: “The humour in his voice is undiminished. It fizzes through his words like soda. Illness has left his character simply intact” (212). Malabou’s emphasis on absolute narrative rupture is belied by these stories of everyday continuity and preservation.

Malabou is critical of the neurological narratives of Oliver Sacks, who (in his own words) makes his brain injured protagonists “heroes, victims, martyrs, warriors”. Coutts’s work eschews any of these narrative temptations and, perhaps because Lubbock wrote his own equally painstaking account of events, there is relatively little of his perspective in her work. This scrupulous refusal to put words in his mouth, so to speak, becomes less a choice as his condition progresses and more a reflection of his growing “introspecti[on]” (165). For these reasons, then, this can only be Coutts’s story. On the other hand, hers is for this space of time a story almost wholly determined by his—a tension that Coutts explores without sentiment or self-pity in all its wonder (the new chapter in their close and loving union) and its suffocation. At many moments the inseparability of the wonder and the terror of this period is felt in her narrative: “It is the dead, the straight dead of night and I have brought my subject and my object, the one who all this is about to the hospital” (190).

The chronological structure of Coutts’s memoir deliberately precludes a narrative trajectory of heroic conflict or martyrdom, although the inexhaustible probing of the nature of her experience speaks to a far more considered endeavour than a mere chronicle or diary. Reflections on narrativity themselves punctuate the work: the limitation of the brain surgeon’s interest to fact denies the family’s “narrative, […] how this thing affects us in daily life” (95); the possible trajectories of the illness proliferate and present a maze of possible futures, “a blizzard of lines” (53); perforce Coutts leaves “white spaces” where her account of Lubbock’s pain should be (“I cannot write on pain so pain does not get written down. It is blank” (255)). These considerations take on a still more poignant form when she talks about their son and the necessity—and challenge—of constructing a “version of our narrative” that he can understand: “There will be no happy end, no moral neatness, no rhyme. […] I feel that two adults must be intelligent and brave enough to come up with something here, some version of a story to help Ev negotiate it. So far I am wrong” (164).

There is little retrospect in the work: this is not a “version of a story” but the hammering out (and often discarding) of words that can never keep up with the exhausting newness of the situation.   There are some lyrical affordances for Coutts and her reader, however; some hard-won moments of communion with the natural and social world when she can reach out to existing metaphors and conventions rather than having to coin her own. Time passing is marked in places not only by a development in Lubbock’s condition but also by the change of seasons. These stages are put into moving connection or counterpoint. Sometimes both at once. The uplift of Spring at the beginning of the second section coincides with a surprising move from darkness to light—decline to reprieve, bad news to good. Spring coincides with the tumour starting, like the nature around them, to “[grow] again”. There is a parallel development that is more positive, however: “Spring. Magnolia soulangeana opens its bells and we are well. Normality is gifted in the form of steroids” (91). The juxtaposition of the natural flowering and the chemically induced “normality” is ironic. This normality, rather than the new normality of cancer, is a simulacrum of the old, a “false peak” which takes them in. And yet this temporary happiness is genuine. The narrative witnesses itself having it both ways: in retrospect, this good news will have proved an illusion (“we are taken in, of course we are”). On the other hand, the relatively flat episodic structure of the narrative takes on a new and moving significance: the writing lives predominantly in the present tense, in a series of moments that have the potential to obliterate what has been and what is to come, and offer an epicurean freedom from fear. “We are as ever in the moment and we are well—so we are forever well. […] We splash about like birds in a birdbath” (91).

While time has become more material in the train of this illness, space has become less so, culminating in the narrator’s loss of purchase on her location at Lubbock’s death: “the action is familiar but not the place. We have stopped being anywhere at all. We are way outside, out of culture, place, gender.” This is, however, a source of peace rather than distress. “I do not know where we are but I feel very sure of myself here.” While space is dissolving, time is “refreshing itself”. In surrendering to time, space disappears from view—but Coutts can at last relinquish the fight and bow to this force, and there is no little comfort in this. “Time is the fundament we have never left, so powerful is its agency and pull, so direct and strange. There is nowhere in the world like it” (291). The end is good: a peaceful sleep for Lubbock, and in a sense one for Coutts too. When death ends a long illness, with its exhausting demands on the carer and its treacherous shocks and feints, it is well known that relief can accompany grief. There is, undoubtedly, this, but also something more than this, here. Coutts also awakes into the narrative at this end point, releasing Lubbock to death and taking his place as her own subject and object (“Go. I am not anything. Go. I am”). He has “[left] us standing” (294), as she says in the last entry, a black pun but also an uplifting statement of fact.

 

The Iceberg by Marion Coutts.

Published by Atlantic Books, 2014

 

References

Debbie Cavers et al, ‘Social, Psychological and Existential Well-Being in Patients with Glioma and their Caregivers’, Canadian Medical Association Journal, vol. 184, no. 7 (2012), 373-382

Tom Lubbock, Until Further Notice, I Am Alive (London: Granta, 2012)

Catherine Malabou, The New Wounded: From Neurosis to Brain Damage (Forms of Living), trans. Steven Miller (Bronx, NY: Fordham University Press, 2012)

Oliver Sacks, The Man Who Mistook His Wife for a Hat (New York: Summit Books, 1985)

Carol Schmer et al, ‘When a Family Member Has a Malignant Brain Tumour: The Caregiver Perspective’, Journal of Neuroscience Nursing, vol. 40, no. 2 (2008), 78-84

 

Tender: On Taking Ownership of Death and Dying by Catherine Oakley

16 Nov, 14 | by BMJ

Lynette Wallworth’s Tender: On taking ownership of death and dying

A particular highlight in the documentary category at this year’s BFI London Film Festival was the UK premiere of Tender, which follows a community group in the Australian town of Port Kembla as it seeks to establish its own, not-for-profit, bespoke funeral service. Directed by artist and filmmaker Lynette Wallworth, the film was a finalist in the Grierson Award Documentary Competition, created to recognise films with integrity, originality and social or cultural significance.

The Port Kembla community’s efforts to reclaim death from the control of multi-national corporations represents an audacious confrontation with deeply-entrenched taboos and carries a difficult but important message: we need to talk about death and dying, because fear inhibits our capacity to decide how we want to mourn or be mourned. The time between death and burial in Australia can be as little as two to three days, and the film shows that this is a period in which practical and financial decisions with enormous implications are made, often in the acute shock of grief. The community leaders in Port Kembla work to reintroduce choice into this process with characteristic determination, spirit and irreverence. Opening a workshop aimed at demystifying legal issues surrounding death and dying, the speaker breaks the ice with a reassurance that when it comes to death, “Nobody fails and everyone gets a certificate at the end”. In another bleakly comic moment, an elderly member of the community showcases one of eight homemade compacted-cardboard coffins she has commissioned, hand-decorated and designed for further customization by her family after her death.

The group’s endeavour to transform encounters with mortality is made profoundly personal as they come to terms with the deteriorating health of their much-loved caretaker Nigel, following a diagnosis of terminal cancer. In this context, their enterprise reveals a tension between the expressed and unexpressed wishes of the dying individual and the choices made by their family and friends. This extraordinarily moving and intimate portrait, beautifully accompanied by a non-intrusive soundtrack from Nick Cave and Warren Ellis, suggests that a health and social system which aims to prolong life at all costs, can in some cases divert patients and their loved ones from the inevitability of death.

Port Kembla is a steel-mining town set in a landscape dominated by factory-stacks, and the community’s challenge to the corporate monopoly on death also raises difficult questions about capitalist ownership of the human body. Reflecting on his life, Nigel expresses regret at the dearth of employment options that were available to him as a young man growing up in Port Kembla. In the post-screening Q&A, Wallworth emphasized the human tragedies generated by an industry “which so dominates a community that it chews up the lives of men.”

The film’s title plays on the multiple semantic possibilities of the word ‘tender’; often used to denote a person who tends or waits upon another, but sometimes, also, in reference to an offer of money for services rendered. As an adjective, it describes physical material that is “soft or delicate in texture, yielding easily to force or pressure.”[1] As such, ‘Tender’ epitomises the film’s central concerns with palliative care, the death care industry and the materiality of necrosis. It is this latter element which underscores the film’s most powerful scene; shot as a sequence of still photographic images, it encourages the viewer to reflect on the sanitization and technologization of death and what the manifold benefits of alternative encounters might be.

Since the film’s release in Australia, other local communities have begun to model themselves on Port Kembla and, Wallworth says, the film is, among other things, “a document containing a lot of information”, a blueprint for other local communities to embark on similar projects. Beyond this, Tender should also stand more widely as remarkable inspiration to seek new meaning and purpose in life, from facing death so nakedly.

Tender is currently seeking a UK distributor for limited release. A DVD of the film is available through the website http://www.tenderdocumentary.com.au/

Tender_17 - picnic

[1] Oxford English Dictionary Online.

 

Catherine Oakley is a doctoral researcher in the Department of English and Related Literature at the University of York, UK, where her thesis investigates the interrelationship between medicine, literary fiction and early cinema throughout the period 1880-1925. She is convenor of the ‘Rethinking Disability on Screen’ symposium, to be held at the University of York in May 2015 (rethinkingdisabilityonscreen.com).

Ayesha Ahmad: Review of ‘Doing Clinical Ethics’ by Dr Daniel Sokol

4 Dec, 11 | by Ayesha Ahmad

Since Hippocrates in early 5 B.C., Medicine has carried an ‘angel on its shoulder’; a reflexive gaze on the skill, and phenomenologies of healing between the doctor and his patient. Ethics is a code, a practice, and a guide amid the terrain of the hands that tend to the body using instruments of medicine’s enterprise. Referring to the Oath:

I will preserve the purity of my life and my arts’.

Daniel Sokol, Honorary Senior Lecturer at Imperial College, London and recently qualified barrister, undertook the challenge of fitting ‘ethics’ into our contemporary medical practice; whereby Medicine is confronted by a body unprecedented in relation to the ways in which we can perceive, examine, intervene, create, and prolong the existence of our bodies; our lives.

more…

The Drama of Medicine-All the Ward’s a Stage: 8th Annual AMH Conference, 11-13 July 2011, University of Leicester,UK

13 Jun, 11 | by Deborah Kirklin

Plans for the 8th annual conference of the Association for Medical Humanities are now well underway, with an exciting line up of papers, workshops and plenary speakers. Celebrated poet and doctor Dannie Abse will be running a session entitled Poet in a White Coat; Jed Mercurio, author of Bodies and creator of the TV series Cardiac Arrest, will speak on the Doctor as Antihero;  Professor Laurie Maguire, from Magdalen College Oxford, will explore Shakespeare’s guide to health and illness; and Matthew Alexander from North Carolina, a leading authority on the use of cinema in medical education, will begin the conference with a workshop and plenary address on this subject. more…

2011 International Symposium on Poetry and Medicine

17 May, 11 | by Ayesha Ahmad

I recently attended the 2nd Annual Hippocrates Poetry and Medicine Symposium, which was held at Warwick Medical School and hosted by Professor Donald Singer and Associate Professor Michael Hulse. During the day, a group of researchers and clinicians from a variety of backgrounds gathered to explore the role of poetry in the discourse of medicine, including renowned poets, Marilyn Hacker and Gwyneth Lewis.

more…

Medicine Unboxed 2011: Medicine and Values, Cheltenham UK 15 October 2011

5 Apr, 11 | by Deborah Kirklin

Good medicine is more than a set of technical decisions and interventions involving drugs, operations or tests. It demands more of the practitioner – professionalism, empathetic care, moral consideration, insight, an understanding of human suffering and necessarily, wisdom. These attributes are not always prioritised in selecting for or training healthcare professionals, and there is little time or attention given to their authentic development within busy working environments. Further, there is a widening hiatus of trust, understanding and expectation between medicine and society around what constitutes good medicine. This pressingly requires real engagement around medicine’s role and society’s values. A purely scientific answer will never prove sufficient here.

Medicine Unboxed is a unique project and conference programme that engages both the public and front-line NHS staff with a view of medicine that is infused and elaborated by the humanities. Contributors include artists, writers, the clergy, poets, philosophers, lawyers, linguists, musicians, theatre, ethicists, academics and doctors. The results are thought-provoking, inspiring, sometimes funny and often
moving.

Our theme this year is Medicine and Values.

We think of medicine as simply fact-based, efficient and scientifically robust. These arbiters can become the measures of good medicine. However, medicine is infused with judgments of value – individually for doctors and patients but also in medical science, for society, for policy-makers and health economists. Ethics, law and religion inform duties and rights in medicine, through principles and values. The values that define good medicine are not always apparent or agreed upon and there remains the potential for tension between them.

We’d like to invite you to come along to Medicine Unboxed 2011 and join us in uncovering the values that pertain to medical care and debating the ambivalences around the arbiters of good medicine. Our speakers this year include the Rev. John Bell, John Carey, Lionel Shriver, Jo Shapcott, Ray Tallis, Paul Bailey, Michael
Arditti and Havi Carel.

Come to the debate – be inspired.

Sam Guglani, Consultant Clinical Oncologist.

http://medicineunboxed.us2.list-manage.com/track/click?u=040c885489432f9ea79fbd23b&id=f00835b9f4&e=1767bdcee5

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