This book is a graphic depiction of the physical and emotional turmoil that constitute the terrifying condition known as locked-in state. It is as much a harrowing chronicle of the helplessness of being fully conscious but immobile, as it is an inspiring account of outstanding bravery and single-minded resolve to get better and ‘return to duty‘. Likening her paralysed state to that of ‘an astronaut, detached from my spacecraft and drifting off into space’, the author provided an excellent description of how an acute brain event transformed her from a ‘determined‘ policewoman with a ‘committed mindset’, one who loved ‘the thrill‘ of ‘flirting with danger‘, into a helpless woman unable to take care of her most basic needs. Whilst it is a heartbreaking story of the unspeakable burden of brain disease, the book is also an uplifting tale of recovery from despair – the author skilfully describing how she slowly but surely regained mobility, speech, swallowing and breathing functions (pages 9, 42, 91, 103-104, 113 and 109).
In her portrayal of the nightmarish infirmity that her devastating illness imposed, the author recalled the details of the fateful day when ‘a weakness in the artery of my neck – an old minor injury sustained in a road-traffic collision‘, exploded on Easter Monday like ‘a bomb in my head’. She remembered getting ready to attend to a 999 call when her body suddenly ‘felt like jelly‘ and she was overcome by ‘a wave of nausea‘, and subsequently felt hot and dizzy. She described how she then lost consciousness as ‘the world went black‘, and when she regained awareness and opened her eyes, she realised that she could neither move nor speak. Feeling as if her body had been ‘disconnected‘ from her brain, she said the episode evoked a rising ‘sense of terror‘ especially when she grasped that people around her thought she was brain dead. She strikingly conveyed the sense of her incapacity when she said she felt more helpless than a newborn child who could at least ‘feed, make noise, kick its legs and wave its arms around’. Equally distressing was the sense of shame that accompanied her disability, such as when she embarrassingly loses bowel control and is forced to lie in her excrement for hours – until the smell caught the attention of the ward nurses (pages 1-3, 23, 33-34, 46-53 and 82).
A theme that ran throughout the book is the sense of isolation that accompanies locked-in state, with the author referring to ‘being alone with your own thoughts when you don’t know what is happening to you’ as ‘a living hell‘. She described how this feeling of confinement is made worse when people ignored her, or talked very little to her. She illustrated this with such examples as when a nurse wouldn’t look her in the eyes; when hospital staff only saw her motionless body without realising she was there herself; and when the paramedics who transferred her to a rehabilitation hospital talked over her ‘as if I’m not here‘. Hoping that ‘just one of the nurses would stop and chat to me’, the author remarked that ‘I am never alone, but I have never felt so isolated‘. She also lamented the lack of physical contact that accompanied her solitude, noting that ‘no one seems to want to touch me’. Adding that she felt more isolated at night, she explained that this was when time ‘slowed down’, and ‘when the dark thoughts crowd in’. It was therefore understandable when she added that ‘twenty-four hours is difficult to fill when you can’t move a muscle and the only thing you can do is stare at the ceiling tiles above you’ (pages 4-5, 16-24, 67 and 123).
The major feature of the book is its intimate depiction of the distressing effects of ‘being in the same position for hours’ – the consequence of her inability to move her limbs. For example, the author likened the burning pain this evoked to forks ‘ripping through every muscle in my body’ and ‘shredding each muscle like a piece of beef’. She also described the uncomfortable sensations that arise from such mundane objects as the ‘nappy under my bum’; ‘a wisp of hair across my face’; and ‘my nightdress being crumpled beneath my body’ – something that she said drove her ‘mad’. It is therefore with relief that the author also chronicled the recovery of her physical functions during her time at the brain injury unit where she underwent occupational, physical, speech and language therapy. She pointed out that her immediate objectives were to regain the abilities to ‘feed myself, brush my own hair, clean my own teeth, wipe away my own tears’, and ‘just to be able to scratch an itch‘. But despite the advice she was given to set realistic goals, the author also had the lofty ambition of becoming ‘the best I can be’. Expectedly, the narrative also captured the frustrations that accompanied her slow recovery, such as when she stated that ‘I hate what this illness has done to me. I hate the indignity of it’ and ‘I hate how helpless I am. Every ounce of my dignity gone’. Her determination to recover was however strong, the author noting that she became ‘consumed with the need to know everything about stroke recovery‘, and this led her to read ‘all the books I can find about stroke and locked-in syndrome‘ (pages 3-4, 17, 22-23, 119-137 and 146-153).
A revealing aspect of the book is the author’s perception of the hospital staff who looked after her during the different phases of her illness. For example, narrating her positive experiences, she praised the doctor who talked ‘directly to me’ and did not treat her ‘like an idiot‘, and the speech therapist who ‘communicated with me as though I were able to chatter to her like I would have before the stroke’. She also complimented several nurses, such as Sarah, ‘a nurse sent from heaven‘, who she said made her ‘feel like a fully functioning woman’; Kerry, who she described as ‘a special person‘ who ‘makes a point of spending time with me’; and the ‘kind-faced nurse’ who talked to her ‘reassuringly, as if she knows I can hear’. She was particularly impressed by the staff at the brain injury unit where she said she felt safe because of ‘the compassion and kindness‘ of the nurses there. Conversely, she sharply criticised the ‘perfectionist‘ nurse who repeatedly failed to notice her discomfort because she did not try to communicate with her, and the male nurse who pulled her bedsheets away to clean her, leaving her ‘lying, naked, in front of a complete stranger‘ – horrified that ‘a male nurse was allowed to touch intimate parts of my body’. She also decried the ‘dismissive‘ attitude of the first neurologist who attended to her because he was wrongfully reassured by her apparent initial improvement. The author was also disappointed by the little information she was given about her illness, and frustrated by lack of answers to the questions she had about the type of stroke she had, her chances of recovery, and her ability to breathe on her own (pages 6-9, 34-42, 56-65, 73-76, 86 and 118).
As important as the hospital care the author received to her recovery was the support she got from her family and other relationships. This was especially illustrated by the critical role played by Adrain, her partner, who was the first person to suspect that she was conscious, and the first to find a way to communicate with her. In an emotional and touching narration, the author also credited Adrain for his invaluable reassurances during the terrifying early days of her illness, such as when he told her with ‘such certainty and such incredible positivity‘ that ‘we are going to get through this together‘. Adrian’s one-sided conversations with her, to which she was later able to respond by using her eyes, and his awareness to ‘ask me closed questions’, were also crucial, the author recalling how she felt ‘safe‘ just by listening to his voice. Also supportive was Diane, the author’s sister whose ‘energy‘ made her ‘feel alive’, and who reassured her by ‘acting like there is nothing wrong with me worse than a bad disease of flu’. The author also praised Diane for not being afraid ‘to touch me’, and and for talking ‘more about what has happened to me than anyone’. Whilst the author acknowledged that ‘there are people who will find the change in me shocking and difficult to accept’, she nevertheless asserted that ‘no matter how bad a patient seems, with love and support, they can do much more than they might expect’ (pages 9-12, 16, 27, 58, 140 and 145).
This narrative eloquently captures the horror of locked-in syndrome and highlights the impact of disability on victims, their families, and their relationships. The author comprehensively documented the lived experience of a sudden and disabling neurological disorder, and she supplemented the narrative with countless photographs depicting the her life before, during, and after her medical odyssey. The author’s vivid description of her frightening illness, and her passionate prose, more than adequately compensated for the rather disappointing book editing and setting. The book unfortunately did not take the opportunity to explore the cause of her locked-in state, or the procedures she underwent. This was however compensated by its excellent illness narrative that captured the positive and negative experience of a vulnerable person going through the healthcare system.
Overall assessment
This book imparts key lessons for healthcare, both in its portrayal of the real experience of being locked-in, and in conveying the wider consequences of brain disorders. The author particularly emphasises the physical and emotional needs of those who are completely dependent, and the requirement to treat them with the same dignity and respect as other patients – whether or not they are conscious or aware. The narrative also underlines how the support of families, and the empathetic care of healthcare personnel, enable good outcomes following neurological illness. Equally important is the lesson that even the most disabling neurological disorders have the potential for recovery – a source of encouragement for families and healthcare providers to persevere in their care. The books lively narrative captures the essence and complexities of locked-in state and I recommend it to all doctors.
The Doctors Bookshelf 