Author: Richard M. Cohen
Overview
With a unique blend of gallows humour and self-deprecation, this illness narrative documents the typically spiralling course that unfolds whenever a progressive neurological disorder strikes in the prime of life. Utilising a tender prose and touching storytelling, the author chronicles the account of how his life ‘wandered off the beaten path‘ when multiple sclerosis (MS) ‘came calling’, shifted ‘the landscape and contours‘ of his life, and ‘never left’. Portraying MS as ‘a disease of process, a grim pileup on the highways of the central nervous system‘, the author vividly described how the illness ‘disrupted‘ his life and ‘derailed‘ his dreams as it imposed almost unbearable physical limitations, and as it unleashed an onslaught of emotional upheavals ranging from depression to rage. But despite the despondency and despair overshadowing the narrative, the book is also an anthology of philosophical reflections in which the author conveys the inspiring message of hope and positivity as he wrested his life ‘from the clutches of illness’ and became ‘stronger and more resilient‘ than he ever thought he could be – an approach that enabled him to assert that, ‘strange as it sounds, I do love my life’ (pages xiv-xvi and 23).
Synopsis
At the core of this illness story is multiple sclerosis, the devastating neurological disease which the author said ‘touches everything I do and affects my body from head to toe‘. Tracing the onset of his illness to the age of twenty when he awkwardly dropped a coffee pot, he charted the development of ever more worrying symptoms such as suddenly losing balance and losing the feeling in his entire left leg. The book also detailed the accumulation of the disabilities he accrued over the years, one of the most profound being visual impairment that started with sudden blindness in one eye, and subsequently involving his other eye. With a devastating sudden deterioration thirteen years later, the author was categorical that blindness was his ‘most difficult problem and the most potent symbol of the weakness’ in his life. Another debilitating handicap that marked a turning point in his denial of his limitations, was falls from progressive walking difficulty; it was indeed only when he started using a cane after a fall that he finally said he gave up his ‘long war against admitting weakness’. Admitting that the ‘race from existing illness cannot be won’, the author eventually adopted a strategy of ‘accommodation‘ and ‘cohabiting intimately‘ with multiple sclerosis, philosophically referring to this as the time he decided to ‘run with MS, not away from it’ (page xiv, 6-11, 21-23, 47-50, 58, 104-106, 117, 130-133, 137 and 148).
The journey to procuring a diagnosis for his illness was a highly emotive theme of the book which spotlighted the lack of empathy that frequently characterises the healthcare profession. Arguing that ‘the diagnostic process then was primitive, inefficient, and imprecise, the author recounted seeing a neurologist who referred him for a spinal tap – a test he caricatured as ‘the ultimate weapon‘ of the neurologist. It was disheartening when the author recalled that the neurologist ‘cooly‘ confirmed the diagnosis of MS with ‘neither a word of consolation nor a recommendation of treatment‘. The author also recounted his other interactions with healthcare professional who treated him ‘as an inanimate object’, experiences which he said evoked ‘antipathy‘ and contempt towards doctors, a pessimistic attitude which he said he ‘elevated…to an art form‘. It is perhaps understandable that the author reacted to his diagnosis with denial, explaining that he couldn’t bring himself ‘to think about the possibility of having MS’ as he had ‘just launched‘ his life’. The absence of effective treatments at the time also fed into his decision to use denial as ‘a coping mechanism‘, and as ‘the linchpin of the determination to cope and to hope’. He described how his denial of illness manifested as ‘a refusal to accept limitations and the determination to keep my life on track’, and as the factor that enabled him to carry on working as a journalist, even visiting flash points around the world. Arguing that ‘serious sickness was a large reality sandwich for a skinny young man to swallow’, he nevertheless saw this point in his illness as the moment his ‘journey to a strange new land began’ – to a place that ‘would be both exotic and crude‘ (pages 10-20, 24 and 109).
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The wider ramifications of illness on the family was a theme the author explored in all its distressing facets. Describing himself as ‘a family man‘, and his illness as ‘a family affair‘, the author revealed how MS sucked in his wife and children and became ‘everybody’s problem‘. Illustrating with countless examples, he showed how his physical disability limited his contribution to family tasks and childcare, and how it transformed him into ‘a spectator‘ who is ‘always on the sidelines or in the stands‘ at his children’s activities. Asserting that ‘sickness in a marriage tests the commitment and places enormous stress on the bond‘, this narrative particularly highlighted how the author struggled to balance his ‘relentless‘ illness with family life and work schedules. It however also highlighted how much the support of his family eased his burden, and strengthened his coping mechanisms, pointing out that ‘even in our pain, we give to our loved ones, even as we receive‘. Remarking that ‘anyone battling chronic illness understands the power of family support’, his story also demonstrated how ‘the commitment to family’, and ‘a determination to be true to self, can see a person through any crisis, including illness’ (pages xiv, 80-94, 127-129 and 179-188).
The emotional dimension of the author’s illness narrative is perhaps the most remarkable aspect of the book, and the emotion that stood out throughout was that of anger. Stating that ‘decades of battling multiple sclerosis…failed to produce the fail-safe system to short-circuit flashes of high emotion’, the author referred to his anger as ‘my unyielding, live-in companion‘ which was ‘hanging close and never straying too far‘, adding that ‘though I have tried to break up that relationship for years’, the ‘anger has yet to vacate the premises’. Likening his episodes of terrifying rage to a beast whose ‘fires keep burning, the flames rising up regularly’, the author attributed them to when ‘pain and shame and fear…visit in a time of crisis’. He also metaphorically referred to his ‘cumulative, pent-up anger’ as ‘the shrapnel from my bitter unhappiness‘ which ‘struck everyone in sight’, ‘driving a wedge deep into our various relationships‘. Another source of his anger was the ‘unnerving’ loss of control which he said was partly driven by the way ‘responsibilities changed’ and ‘roles reversed’ in his family – what he said was ‘a lopsided power structure‘ which he resented. It is interesting that whilst his anger was accompanied by humiliation, he said it also brought him relief. Other harrowing emotions the book discussed included self-doubt, self pity, loss of self esteem, a ‘diminished self-image, and ‘biting feelings of inadequacy‘ (pages 26-33, 54-78, 167, 175-178 and 208-211).
The author’s attempts at managing his disruptive emotions also formed an insightful and reflective theme of the book. Indeed the author portrayed his experience as a ‘psychological war with illness’, and as ‘the search for emotional health‘ and ‘emotional strength‘. In the process, he said he discovered the unlimited scope of ‘human endurance which enabled his spirit to grow strong and soar’ even as his body weakened. In describing the strategies he used to cope with the emotional repercussions of MS, he detailed such approaches as discipline, self-control, rising above ‘the culture of perfection‘, and developing a perspective which helps ‘the finished man’ to ‘find a way to live, though stripped of his power’. Whilst he admitted that ‘resignation presides’, he insisted that ‘personal strength, in the end, wins out’. He however conceded that anger was a challenging emotion to control because ‘anger is hard to legislate‘ and ‘getting a grip became a long haul‘ (page xvi-xvii, 28, 171, 193, 222, 225 and 235).
Opinion
Using highly effective prose and metaphors, this book graphically portrays the impact of chronic neurological disease not just on the lives and occupations of the sufferers, but also on their family and relationships. With a deeply philosophical narrative full of self-reflection, the author shows how the harsh reality of disease could be tempered by a realistic perspective. Whilst the book shows how illness strips and brings down its victims, it also highlights how the response to illness can strengthen and elevate. The narrative does not provide much information about the contemporary diagnosis and treatment strategies of MS, but it compensates by detailing the real-life experience of the step-wise deterioration of this common neuro-inflammatory disorder. The story of the author’s co-morbid development of cancer also added to the granularity of the illness narrative, a real-life experience of many illnesses.
Overall assessment
The author’s depiction of the diverse dimensions of illness is most insightful and a lesson to patients, their families, and their healthcare providers. Beyond providing the patient perspective of illness, this book also conveys lessons on the consequences of poor doctor-patient communication, and of the value of empathy in engaging with the ill. The book highlights the impact of varied emotions on the illness sufferer, and the coping strategies they use, and this is replete with lessons for healthcare practitioners who often only see the physical side of disease. The book is a profoundly moving and enlightening take on the long and complicated course of a chronic disease, and I recommend it to all doctors.
Book details
Publisher, Place, Year: Harper Collins, New York, 2004
Number of chapters: 13
Number of pages: 236
ISBN: 9780060014094
Star rating: 5
Price: £4.85
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