Author: Havi Carel
This book is an eloquent and poignant testimony of illness in all its ramifications. The author is a young philosopher who developed a life-changing and life-limiting lung disease. She wrote the book ‘in the hope of making illness a little less scary, less anonymous’ (page 21). She illustrates the whole range of challenges ill people face, from routine social interactions with friends and strangers, to negotiating a new world ‘of limitation and fear‘ (pages 56-72). The book calls attention to the societal attitudes which reduce the ill person to their illness, and it promotes a philosophy which sees illness ‘as a life-transforming process, in which there is plenty of bad but also, surprisingly, some good‘ (pages 14 and 70).
The key feature of this book is the author’s graphic description of her experience of illness. Her tragic narrative starts with the emotionally tumultuous and turbulent moment when ‘everything I had until that point taken for granted was thrown into the air’ (page xiii). She described the crushing ‘physicality of bad news’ which ‘seared like burning oil on skin’ and ‘crushed me with invisible force’ (page 5). She used beautiful prose to depict the debilitating progression of her chronic illness, such as when she recounts the sensation of being ‘locked in my body, trapped by the feeble lungs…’; or the perception that ‘every week my world was shrinking more and more’; or seeing how her world was ‘becoming smaller and harder to negotiate’ (pages 7 and 45). Her narrative graphically illustrated the ‘bewildering array of emotions‘ all ill people experience, from shock, depression and disillusionment, to anger, envy, and self-pity (pages 6 and 37-41).
The author’s inner strength is most evident in the methods she used to adapt to her new reality, and to cope with her impending mortality. The book illustrated practical and pragmatic measures such as focusing on the present, discounting the future, and ‘enjoying things thoroughly’ (pages 144-146). The author learned to be positive, asserting that pleasurable moments are achievable ‘even if one’s life is burdened with illness’ (page 153). She illustrated how she learned to love what she still had, ask for help, and surrender vanities (pages 7-8). She also described learning to cultivate ‘an inner state of peacefulness and joy‘ by ignoring insignificant worries and discovering how liberating it is ‘to live in the here and now‘ (page 76-78).
Throughout the book, the author pointed out how her experience of illness was tainted by her interaction with the healthcare system. She bitterly criticised the medical profession for several failings, particularly the painfully familiar complaint of lack of empathy. She regretted that only ‘few cared to make the encounter more comfortable and less frightening for me’, emphasising that of the ‘many terrible things about illness…the lack of empathy hurts the most’ (pages 45-48). She reviewed the reasons why medical encounters are ‘so impersonal, so guarded’, blaming this on ‘the unwritten law of the medical world, where news of deterioration and terminal illness are to be met with dry eyes and a steady gaze‘ (page 47 and 50).
The author explored this disconnect between health care providers and their patients in meticulous detail. She attributes this to the medical culture of ‘treating disease as a purely biological dysfunction’ whereby illness is seen as a purely physical or naturalistic state (page 54). To remedy this situation, the book advocates a phenomenological or narrative approach which takes into account the global impact of illness on patients (page 10). She advocated ‘speaking to patients as equals, showing fundamental human empathy and compassion, understanding that but for the grace of God it could have been you’ (page 54). The author points out that physicians find this first-person, phenomenological approach threatening, preferring the naturalistic approach which they find protective (page 103). She believes that if health care practitioners understand the experience of their patients’ illness, they could avert ‘much of the misunderstanding, miscommunication and sense of alienation‘ that patients report (pages 52).
Expectedly, the book is replete with references to philosophers. She prominently referred to the contrasting views of Martin Heidegger and Epicurus on the human attitudes to life and mortality. In a chapter aptly titled ‘Fearing Death‘, she discussed the therapeutic potential of philosophy in countering the fears that accompany illness (pages 138-139). She references Jean-Paul Sartre on how illness impairs the body’s natural interaction with the social environment (page 64). She also discussed Rene Descartes‘ dualistic view of the human body, but she preferred Maurice Merleau-Ponty‘s holistic (phenomenological) view, arguing that ‘the separation between mind and body does not make sense’ (pages 24-26).
This is an excellent book which achieves the fine balance between the personal narrative of illness and the academic philosophy of suffering. The author’s contemplation of mortality is as touching as her academic discourse is profound. Her narrative of the negative experience of patients who encounter healthcare has profound lessons for doctors. Her attitude of living in the moment and discounting the future is also a simple panacea for everyone, ill and well alike. Some sections of the book are a bit repetitive, and doctors may struggle to get their heads round some of the more complex philosophical arguments. The book is however very clear, infused with lucid writing.
This is a profoundly life-changing and touching book which highlights the fundamental impact of chronic illness on patients. The author applied her philosophical background to great effect, exploring the influence of mental attitudes on illness and mortality. The book particularly explores how the subtle manners and disposition of physicians may significantly affect the patient’s experience of illness. It is an exceptionally insightful book and I recommend it to all doctors.
Publisher, Place, Year: Routeledge, London, 2014
Number of Chapters: 5
Number of Pages: 168