This memoir narrates the mysterious illness and inexplicable recovery of a young man in the throes of locked-in state. Recounted with wit and poise, the book tells the terrifying nine-year experience of being fully aware but unresponsive, the author likening his predicament to being ‘a silent witness to the world around me as my life passed by in a succession of identical days‘. With his mind ‘trapped inside a useless body’, and his voice ‘mute‘, he chronicles his passive and dependent engagement with family and carers just as he documents his tortured thoughts and philosophical reflections. And as he observed humanity at its best and at its worst, the author populated his account with excellent portrayals of countless saints and villains. As a counterbalance to its portrayal of the horrendous repercussions of locked-in state, the book is also a heart-warming tale of recovery founded on a combination of love, attention, and patience (page xii).
The book’s central narrative is the puzzling case of a 12-year-old ‘normal little boy’ with a flair for electronics who journeyed into what he termed a ‘dark, unseeing world‘. Starting with a sore throat, the author described how ‘a mysterious illness‘ struck him and, over the following months, gradually deprived him of mobility, speech, cognition and vegetative functions. He illustrated the impact of his immobility when he said ‘sitting still for hours on end’ made him feel like he has ‘been shattered into a million pieces and each one is hurting‘, and when he recounted how ‘the strap holding me up cuts through my clothes into my skin’, all the while hoping that ‘someone would lie me down and relieve the pain’. He also heartbreakingly narrated how all his efforts to speak failed, and the only movement he could make was ‘a muscular twitch close to my elbow’ – a state he metaphorically referred to as being ‘marooned on the island of myself’ and ‘completely alone in the middle of a sea of people’. Conveying the scale of his physical deterioration, he remarked that ‘nothing could reach me as my muscles wasted, my limbs became spastic and my hands and feet curled in on themselves like claws’. And as his undiagnosed condition persisted beyond a year, and as his doctors gave up on curing him, the author said he became ‘lost in the land where dragons lie and no one could rescue me’ (pages 3-7, 12 and 15).
A theme of the book that was equally uplifting and disheartening was the author’s one-sided interactions with his carers and his family. For example, the author referred to the attitude of carers who he said variously showered him with insults, ‘impatiently ripped off my blanket as I slept’, and ‘threw me into a chair so roughly that I fell out of it’. He similarly described undergoing physical, verbal, and sexual abuse by various carers, abuse that he regretted went unnoticed because ‘no one looked’ at him to see the signs. The book however noted that most of his carers were good, and supporting this with such examples as that of Rina, who saw her care work as ‘a calling‘, and that of ‘middle-aged, plump and smiling’ Dora whose ‘calmness reassures me’. The author similarly painted a delicate portrait of how his illness impacted his family. For example, he described how his father ‘proved his faith in me in a string of tiny acts’ as he shouldered the burden of his physical care at the cost of his ambitions and career. He however said that his mother, focused on protecting his siblings ‘from a similar fate‘, initially isolated herself from him and antagonised his father’s efforts. The author remarked that this situation drove ‘a deep wedge‘ in the heart of his family which was only reversed after his mother, tortured by guilt, sadness, and ‘feelings of darkness and desperation‘, eventually ‘softened‘ (pages 30-33, 40-41, 61-63 and 160-168).
Perhaps the most distressing feature of the book’s narrative was when the author realised that people around him were oblivious that he was conscious. With palpable anguish, he described becoming aware that ‘people were looking through and around’ him, and that ‘however much I beg and plead, shout and scream, I couldn’t make them notice me’. It was not until much later, when he said his mind began ‘slowly getting stronger as the pieces of my consciousness knitted themselves together’, that he realised he was ‘completely entombed‘. He described the psychological toll of this as he experienced rage, horror and disappointment, and as he struggled to contain the three most agonising emotions – what he referred to as the ‘Three Furies‘; frustration arising from loss of control over decision-making about his case, fear of being powerless about his future, and loneliness – ‘the most terrifying of the furies’. Amongst his strategies for coping with his prolonged period of sequestration was learning to keep time using the sun, a ploy that he said enabled him to ‘master time instead of being its passive recipient‘. This was also the skill which he said enabled him ‘to understand the infinity of time so well that I’ve learnt to lose myself in it’ (pages xii, 1-2, 13-16 and 80-85).
The most inspiring theme of the book is the author’s road to recovery which began when it became evident that he was conscious. The author pointed out that it took so long for anyone to realise that he had recovered his awareness because ‘everyone was so used to me not being there‘. Indeed his journey to recovery only began when Virna, a relief carer, looked at him ‘properly’ and started speaking to him. Arguing that Virna’s communication skills were vital to his recovery, the author maintained that she understood his limited language of ‘smiles, gazes and nods‘, and that she became ‘more and more convinced that I understood what she said’. Aside from her ‘intuitive communication ability‘, Virna’s kindness, which the author said he could tell from her voice, and her ‘healing fingertips that worked muscles knotted by disease’, also played a significant role in his recovery. Further asserting that Virna was ‘the only person to touch me in anything but a perfunctory way’ to ‘soothe my aching body’, and ‘the only one who sees me’ and ‘believes in me’, the author also credited her with providing him ‘safe passage from my silent self‘; she not only dispelled ‘all the doubts’ other people expressed, but she also convinced his family to arrange a formal test of his awareness – a dramatically successful procedure which the author likened to an ‘awakening‘ (pages 16, 18-23 and 48-49).
The critically important step to the author’s effective rehabilitation, and for bringing him ‘back to life’, was a sophisticated electronic speaking software that he acquired. Describing his ‘desire to master‘ this gadget as ‘all-consuming‘, the author argued that communication was more important to his rehabilitation than mobility because ‘words and speech…give us freewill and agency‘. And in a wider exploration of his communication rehabilitation strategy, the author highlighted the importance of people making ‘a conscious effort to look at me and listen to what I have to say’, and of providing him ‘the space to speak because I can’t butt in’. He also stressed that ‘conversation with me is as much about the silences as it is about the words’. It is also relevant that it was his mastery of computer technology that enabled his re-integration into society and the workforce; his apparently innate ability to fix a faulty computer at his health centre led to his employment ‘testing software for a company, and this opened the doors for him to become a much-sought after public speaker. His social world also opened up as fell in love and got married (pages 53-60, 68, 81-82, 88-94, 122-132, 139, 144-149, 185-188, and 200-285).
With short chapters and great phrases, and supported by excellent metaphors and a simple prose, this book is an excellent insight into the life of long-term locked-in state. The text is also greatly elevated by the author’s philosophical reflections no doubt honed by his years of silent contemplation. The chronicle of recovery after years of illness is a testament to the healing power of the body when given sufficient time, and the story of implausible recovery is a tribute to the incomparable value of kindness and empathy. The account is also a witness to the social disruption that illness imposes on a family when one member develops a chronic illness. Whilst the early illness narrative was focused and insightful, the latter part was a rather dragged out love story which added little more to the book’s lessons.
This portrait of a young life interrupted by illness brings to light the importance of love and perseverance in the care and the recovery of all those afflicted with chronic illness. It also stresses the value of attention and communication in the management of those in locked-in states. Just as it shined a disturbing light on the way the disabled may be abused by their carers, it also described, with illustrative examples, the excellent approach to the care of the vulnerable. The book, a helpful study in human nature, also teaches invaluable lessons in the management of all helpless patients, and I recommend it to all doctors.