As mentioned on W2tQ before this book has been feigning illness for over a year, sitting static on the bookshelf. Brushing it off has brought great reward that was quickly delivered as the book is just 160 pages plus references and index. My review copy is the revised edition from 2013.
The book is well structured with five chapters, that tread a consistent path through what is a very objective-subjective landscape. The author's aim and orientation is clear from the beginning. Each chapter provides a phenomenological account of how illness affects the life of individual. The shadow that is death is also an important thread throughout the book, culminating in the final chapter. Havi Carel describes the book as neither a personal story nor a purely philosophical reflection on illness. It is both, we are told (p.15).
The introduction lays out the disciplinary, experiential and perspectival divide that the book seeks to address, broadly normativist and naturalistic approaches to health and illness [presented using h2cm]. I say consistent above as you can see the personal story and philosophical aspects, but amid this 'illness' Lymphangioleiomyomatosis (LAM) a balanced gait between the personal account and philosophical dimensions is maintained. According to the text and Foundation: LAM is a progressive lung disease that usually strikes women during their childbearing years. The introduction and chapter 1 provides the narrative to the discovery of having LAM. This demonstrates the rather frequently haphazard, deferred, denial-oriented way in which people seek medical help. Given the apparent severity of the symptoms you might expect that help was sought sooner. I thought that was a male phenomena? This is one of several 'what ifs'... Havi expresses later.
Others reviews (yes I read one) remark on Carel's candidness and honesty. The book is courageous too, engaging the reader as an interviwer-interviewee; some questions are answered in the next paragraph, others left for the reader. Yet privacy, dignity and self-respect of the author foremost and people (family, friends, professionals) involved is preserved.
The philosophical discussion is not very technical, accessible it draws upon ancient Greek philosophers, notably Epicurus and the phenomenological school of Heidegger, Merleau-Ponty. Further reading is listed and related to the book's themes. Critics of the book as Mikey Burley describes, see too many emotion-laden autobiographical anecdotes. The appeal for me of this book and the achievement of the author is to stress how the humanistic is still so frequently lost. The mechanistic stamps on communication, compassion, effective and person-centred care. Recourse to anecdotes is inevitable if we are to integrate an individual's experience and what the sciences can offer. Not just knowledge in all its forms, but seeking 'truth' - or its best approximation. Is the battle the individual Vs. the disciplines? Psychology is well established as a discipline and yet its early beginnings in Wundtian introspection were found wanting. We are still seeking balance.
The book is neither a treatise nor a tractatus, but it does seek to gain traction on meaning within health theory, practice. This is not armchair philosophy, it is everyday philosophy as might now be found in some pubs (public houses), it is trying to move towards philosophical therapy. Havi Carel addresses the way that health is taken for granted: we notice when there is a problem, functionality is curtailed. Contemplation of decline, mortality and death is not for the everyday, it is for the aged, Havi's students: Havi and many others who are touched by illness.
The body and mind feature large as would be expected, embodiment and agency. "We are our bodies; consciousness is not separate from the body" (p.16). What stands out for me is Havi Carel's call for a deeper conceptual shift since physiological accounts are insufficient to represent the personhood of illness. Actually, I know we keep saying 'deeper' but taken literally that might be reduction's way. The dichotomies here: objective-subjective, physical-mental health, internal-external (p.70), social model-medical model, self-other, health-disease and others ... seem to demand conceptual outreach. 'Meta' is everywhere these days, is this the case as Carel writes, with habit or pre-reflective: something for me to explore (p.27)?
Carel states what we know, but needs to be flagged. What does a walking stick represent, a zimmer frame, a wheelchair? In the same way that time can be compressed and extended so too can distance: it is not objective (p.16). As a former cross country runner that lesson was learnt quite a while ago, running diagonally across a ploughed field on a hill in February: oxygen debt. Once paid I recovered, but with a diagnosis like LAM and other rare diseases. I realise another definition of the individual-group axes within Hodges' model: a small group can become and act as one through activism.
Havi writes of mentally recording things, to remember abilities that will be lost, as adaptation and adjustment blur past and present. Experience of nursing people with dementia has prompted me to try to do this. Carel's hiking, swimming desire to push the envelope is universal. I can still remember the path running through Crompton's Woods, the trees, the turns the ups and downs. Reading Illness I recalled my brother vaulting over the back fence, we would land already halfway down the embankment the dust caught in the summer sun. We flew then. The woods for decades now a housing estate. Remember.
While reading was there was a coincidence in the media, the news of disease, cancer, life choices and bad luck (p.37). I suppose it is down to luck who deals with us a patient-client. I've always viewed an accepting, positive, open and caring attitude as fundamental for health and social care practitioners. Carel encounters care professionals who should be doing other things. Chapter two 'The social world of illness' begins with a single word: empathy. Regardless of ongoing austerity - Carel's story begins in 2004-2006 - empathy is the emotion in shortest supply. This really hurts. I am still trying to find a name for the professional who fails to be human, preoccupied with the mechanics of illness (p.47).
We have digital humanities and as noted in W2tQ medical sociology boasts an established literature. The medical humanities and philosophy of medicine are seeing to extend our understanding of health and illness (p.51). I am encouraged in the need for holistic views and approaches, conceptual and cultural frameworks (p.53). The counterpoint to unprofessional, negligent, disrespectful professionals is the need to learn to be rude, in order to cope generally (p.55). Some sentences are definitive. On well-being: "Well-being is the invisible context enabling us to pursue possibilities and engage in projects" (p.64). If I ever write another paper on information I will reference page 70, as I continue to reflect. Is technology, data - big and small and the quantified self the whole answer to healthcare's challenges?
Page 80 invites a philosophical discussion on personal identity, dementia and existence, to which we could also add sense-making and grief. The impact of illness is well made, as is the explanatory power of Heidegger. There is a mental exercise - imagining health within illness. I can extend this:
- Apply the concept of health to the domains of Hodges' model?
- Apply the concept of illness to the domains of Hodges' model?
- Apply the concept of health within illness to the domains of Hodges' model?
I have many more notes from chapters 4-5 and at least one more blog post to follow. Other questions arose from chapter 5. Will people be referred to mental health services in future because they are deemed suicidal as they decline their personalised genomic treatment (Kim Stanley Robinson's, Red Mars)? Chapter 5 Living in the Present had me thinking about Plato's Philosopher Kings (p.148). At the end of the day we must rule ourselves even in the darkest of circumstances, but this takes wisdom and philosophy. This is a much needed book and I have only scratched the surface. I will let you learn of the book's full title and the significance of the same. A great read, despite the subject.
BURLEY, M. (2011), EMOTION AND ANECDOTE IN PHILOSOPHICAL ARGUMENT: THE CASE OF HAVI CAREL'S ILLNESS. Metaphilosophy, 42: 33–48. doi:10.1111/j.1467-9973.2010.01675.x
Many thanks to Katharine Green, Editorial Assistant, Acumen Publishing for my copy.
BBC Radio 4: In Our Time, Phenomenology