This book is unique in its dramatic portrayal of an illness which is teeming with riveting twists and turns; starting off as a commonplace neuroinflammatory brain disorder, it rapidly snowballs in multiple unpredictable directions. Indeed, instead of a stereotypical illness narrative, the story turns out to be an instructive case study in how, with the brain, even the most mundane presentations can assume the strangest dimensions and provoke the most bizarre complications. By intertwining the illness narrative with flashback reminiscences of their life before, and by contrasting his premorbid and post-illness personalities, that author created a vivid mosaic that fully represented the cruelty of the illness and the burden it imposed, both physical and emotional. The book turns out to be an intimate portrait of a relationship with a neurologically impaired person which the author, an award-winning screenwriter, likened to ‘living with a ghost‘ who is ‘part toddler, part elderly dementia-ridden patient, part frustrated teenager, part child‘ (pages 56-108 and 204).
The platform for the memoir is multiple sclerosis (MS), the disease that has plagued the author’s long-term partner, Jacob, and which she said ‘hovers dark and damp, like fret on a void day, threatening to disrupt another evening, another holiday’. The story began innocuously enough when Jacob developed a headache which the author likened to ‘a knife running from the top of your skull into the back of your neck’. She chronicled Jacob’s rapid clinical deterioration after he suffered a seizure and became ‘silent, staring, refusing to communicate’. After an initial normal MRI brain scan, and after treatment with barbiturate-induced coma, the author described how he went on to develop increasingly peculiar symptoms, from incessant speech and violent agitation, to tics during which his fingers tapped ‘as if keeping time to some silent concerto‘. As his illness followed a rapidly fluctuating course, he slipped ‘in and out of consciousness as if he was ‘shutting down’, he developed ‘schizophrenic‘ and ‘shape-shifting‘ changes to his personality; and he suffered recurrent chest and line infections (pages 1, 4, 6, 20-22, 33-34, 37, 43, 48-50 and 61-62).
The underlying cause of this rather complex neurological presentation emerged as the illness narrative evolved. And at the heart of it is anti NMDA receptor encephalitis, a rare adverse effect of an experimental MS treatment that Jacob had been on shortly before his illness started. Told that this form of encephalitis had a poor prognosis of recovery, and that he was ‘going to need care for the rest of his life’, the author narrated how his condition resisted different treatments until his doctors gave a desperate trial of bortezomib ‘to see if it will control the storming that is targeting the NMDA receptors’. Indeed, on bortezomib, the author said he started ‘coming back‘ and ‘pulling through‘ in ‘bumps and starts’; in a narrative in which she addressed him directly, she described how ‘you wake. You silently stare, eyes travelling across the room, looking at the faces, the ebb and flow of nurses moving back and forth. Then you sleep again’. She similarly portrayed how he came to ‘need less and less help‘, ‘getting closer to breathing on your own’, and ‘coming back to life‘. The author nevertheless had ‘a growing sense that it is never going to be OK again’, adding that ‘in that moment, I do wonder how I am going to do this. Get this man home and better, get my kids to school, get the show I have written made, get myself through cancer‘. In a sad admission of the double-edged outcome of the acute illness, the author referred to ‘the cruelty of medicine that works so hard to save a life, yet gives no promise of actually bringing the person back’ (pages 42-44, 51-53, 66, 104, 114-116, 170-171 and 178 ).
The most intriguing symptoms of Jacob’s illness, symbolic of the extraordinary ways by which brain disorders manifest, are the ones he manifested during his recovery. Just as he began to speak and utter ‘his first proper words for seven months’, and just as he grew in confidence, the author noticed the ‘disconcerting‘ way he looked ‘sternly‘ or ‘glaringly‘ at her, or refused to look at her at all. As this progressed, she said he started addressing her rudely and suspiciously, declined to look at her photographs, saying he did not know who she was, and exclaiming that she was not Abi as the real Abi has ‘gone away‘. As it dawned on her that ‘he doesn’t know me, can’t locate me’, she said she felt as if she had ‘been rubbed out‘. Referring to this delusion as Capgras or imposter syndrome, the author recalled how it evoked anger and tears, and made her feel ‘more and more invisible‘. It was with a heavy tinge of sadness that she said, at his discharge from hospital, that ‘we are taking Jacob home, but not Jacob. A stranger who is strange and yet not a stranger at all. And I’m scared. I’m really scared‘, adding that ‘trying to bring back a partner who no longer remembers you is a crushingly humiliating business’ (pages 117-121, 116-129, 132-138, 146-147, 172 and 177).
In contrast to the harrowing story of the evolution of his delusion, the story of his recovery from it was touching. The author described how, in his perspective, she first ‘morphed…to someone kindly, who seems to have a slightly uncomfortable affection for him’. As his delusion gradually lifted, she said ‘Jacob lets me accompany him, coming to accept that I am some kind of person who has been appointed…to look after the children and him’. On her part, she was determined that ‘he needs to start remembering me’ because ‘I’m tired of zombies, ghosts and imposters‘, and saying ‘I wish you’d call me Abi. I wish it so much you see me cry. And you look at me with such confusion, such concern…that you tear up too’. She then said he eventually accepted that ‘there is no point fighting it anymore’ and started calling her by her name. She however said it took a painfully long journey for her to rekindle her feelings for a stranger, acknowledging that ‘despite our attempts to repair, to feel complete, the absence of Jacob, the loss of the man we knew, is ever present’ (pages 138, 166-168, 179, 200, 205, 217, 244 and 266).
The impact of Jacob’s illness on her physical and mental health was also a revealing theme of the book. It is relevant that she narrated this on the background of years of coping with his MS, remarking that she was already ‘tired of the years of steroids. And nights on the spare bed. And the passive aggression that accompanies every exchange as we tread around, over and under this illness’. She also noted the added strain of her diagnosis and treatment of breast cancer midway through his acute illness, saying that this had left her ‘utterly exhausted‘ and ‘hollowed out‘. There was also the worry of the economic cost of caring for him at home, which she said ‘will take all our savings and will regularly clean us out financially‘. On this was added the responsibility of caregiving which she undertook, and which see admitted triggered periods of being ‘bad tempered‘ and of feeling ‘so sorry for myself’. She however documented various ways by which she dealt with the tragedy, such as by philosophically seeing the situation in a positive light, and determining to face it fighting, saying ‘you do everything in your power…to claw your way back, pull yourself up‘ (pages 4-5, 150-154, 165, 185, 188 and 273-274).