What a curious journey! Journalist Christian Donlan casts himself as an explorer of the brain in the aftermath of getting diagnosed with Multiple Sclerosis. He commits to a series of expeditions in order to learn more about dealing with a neurological disease, only to discover that it was all an avoidance strategy. Or was it? Nothing is ever certain for long as he investigates the shifting sands of MS and his reactions to it.
For sure, Donlan expands his (and our) knowledge of the brain, and myelin, and scans, and the history of MS. There is a brief exposition of this material before each of the ruminative and personal chapters, in which the author leaves the knowledge behind and instead explores his emotional journey. He honestly doubts his own credentials for reporting this story. For example, he admits that he was unaware of his early rage, a rage reminiscent of his brother Ben, who had a brain tumour in his twenties. Later on, under the influence of an anti-inflammatory drug, Christian Donlan switches constantly from depression to euphoria. “I spent my early days with MS floating back and forth between a state of absolute confusion and a state of absolute certainty, thinking that I had cracked it, that I finally understood what MS was and what it meant for me.” Just as MS presents differently at different times, so Donlan presents a different attitude from day to day. “The fog of complete bewilderment, the toxic Zen of complete comprehension….would flow together, cancelling each other out. I would entirely forget one state as I raced into its equal, its opposite, zipping back and forth in days, sometimes mere hours.”
Christian Donlan’s early experience of Multiple Sclerosis includes many symptoms that are described in textbooks. Indeed, he comes to understand that “when you finally look up some private and wordless sensation, you often find that it has been catalogued and codified”. Early on he experiences tingling and sensory changes in his hands, shocks down the spine (Lhermitte’s sign), loss of proprioception resulting in clumsiness and disordered balance, and so on. Later he reports on the extreme tiredness and disorientation that comes with double vision. He worries about some signs of cognitive decline, such as word-finding problems, but he is not sure whether disinhibition and decreased memory, awareness and ability to problem-solve are part of the disease or part of his anxious reaction to it. He has spasticity in his arms and legs. On one occasion he travels to London for a work meeting, forgets the purpose of his journey and returns home, and he becomes aware of a lack of energy and confidence, and a reduced ability to focus and plan in moments of crisis. Towards the end of the book, Donlan describes his experience of a chemotherapy treatment, Lemtrada, his reaction to treatment options and how he copes with the drug regime and the effects on his immune system.
Accompanying him on this journey through early MS is his partner Sarah, and their daughter Leontine. Sarah is a vital support, who is able to point out where Donlan is engaged in avoidance. His calm acceptance of a spell of temporary partial blindness sparks her tears and her fear that his neurology quest is “a way of distancing yourself from the reality of the situation, and the reality is simple.” He is not acknowledging the disaster that it is. Only then, she suggests, can they “work out what kind of life we can lead now that this disaster is here.”
Donlan’s infant daughter Leontine is also a vital presence. He is diagnosed on the day Leon takes her first independent steps. He becomes aware of his altered sensation in his hands as he plays Lego with her. Gently and perceptively he observes Leon’s changing skills and view of the world. He points out the many parallels and contrasts between his own apparent neurological decay, and his daughter’s development, between her widening horizons and his narrowing ones, and so on. But, fixed on his own neurological problems, he and Sarah only belatedly notice that Leon is extremely short-sighted. His daughter’s example entices him out of an introspective response to MS, towards the kind of exploring mindset that he had first aspired to, but lost.
This is an allusive journey through metaphors, which matches the infuriating, unpredictable and unfathomable essence of MS. Christian and Sarah take a boat trip around the marine wind farm being built near their Brighton home, and these become the windmills of his Quixotic quest. “I set off to discover the truth. And then I lost my way. And then I made life difficult for everyone around me. Is that my story?” In time, Donlan realises that knowledge of neurology may be useful, but that there is no definitive map for this condition. The very variability of MS, its unpredictability, means that each person who has it experiences it in their own way. “MS is unprecedented. For me and for everyone who gets it. You have to become the only expert. You have to become the only one. In some crucial way, you have to be alone with this.”
The Unmapped Mind is an engaging and yet challenging read, matching the intangible nature of the subject. I would recommend it to anyone newly diagnosed with a progressive disease wanting to read about neurology and coping with a neurological condition. It will also give clinicians a fascinating glimpse into the changing emotions and understandings that someone may have following a neurological diagnosis.
Donlan, Christian (2018) The Unmapped Mind: a Memoir of Neurology, Incurable Disease and Learning How to Live, London, Viking
Audiobook available: https://www.storytel.com/in/en/books/501248-The-Unmapped-Mind