Barbara Lipska’s experience presents a problem, and her memoir attempts a partial solution. For how can you remember what it is like to be not yourself? If you are not there to associate events and their emotional import, how can you recollect and describe them?
Lipska became ‘mad’ (her description) as a consequence of metastatic tumours growing in her brain secondary to a melanoma. She exhibited many of the signs of schizophrenia and dementia, conditions she had spent her career as a neuroscientist trying to understand. And yet, during the period she experienced these signs, she lost the very part of her brain that would enable her to recognise, understand and remember those symptoms. Released from the control of the premotor cortex, Barbara was disinhibited, impatient, and easily irritated. Relations with family, work colleagues and health professionals took a nose dive as aspects of her personality presented in extreme forms. Physically she was still functioning: getting to work, taking exercise, and making dinner for herself and husband Mirek. But this is a different Barbara, gradually succumbing to the effects of tumours and the swelling in her inflamed brain. She is desperate to retain control, but incapable of assessing different points of view or to take advice from others. Most curious of all, she lacks any anxiety or fear about her deterioration, even when it comes to a crisis and she has to be admitted to hospital.
It is a gripping story, with some dramatic examples of disinhibited behaviour, such as getting lost in her neighbourhood with red hair colour dribbling down her face, becoming incontinent during a run and not caring, and so on.
The symptoms of her disrupted brain function are similar to some of those seen in schizophrenia and dementia. She gets lost when out for a run, cannot remember an article she has read five minutes previously, and gets distracted very easily. Like someone with schizophrenia she cannot evaluate the relative risks and advantages of her treatment – being desperate for a cure, she conceals from her clinicians important clinical details in order to stay on an immunotherapy trial, with the result that she suffers a critical level of brain inflammation and swelling.
This is where the authenticity of this memoir comes into question. For several reasons. The account is punctuated by the author’s commentary on which parts of the brain might be going awry. These comments are evidently part of the retrospective reconstructed story by an author who is a world expert in brain function. She acknowledges that her memories are partial – the emotional import of many events were such that they were meaningless and forgettable. She tells us how she consulted her family about what happened during her spell of madness, and has reconstructed some of that period thanks to their recollections. And in this sense it is difficult to know what is remembered and what is reconstructed, what was felt at the time, and what are reconstructed emotional memories.
I think some of the interest here is in the role of Barbara Lipska’s family. Some of the personality changes that the family observed were so subjective that it was hard for them to be sure that they were organic symptoms caused by changes in Barbara’s physical condition. Lipska concludes that ‘it can be very hard to admit that personality distortions like the ones I experienced – anger and irritability, loss of inhibition, and lack of empathy – might be signs of serious problems in the brain and that a physician’s help is needed.’ And in her case she was surrounded by relatively expert family members who knew a great deal about the brain and brain pathology. It must be much more difficult for family members without such knowledge to make the connections between intermittent examples of odd behaviour and brain pathology, when those examples are just as easily rationalised as due to a bad day or lack of sleep.
This is an interesting insight into what makes us who we are, and how the state of the physical brain determines our personality and day-to-day faculties of attention, interest, and evaluation, which are only truly valued when they are lost. The good news is that Barbara Lipska recovered those faculties following the immunotherapy and other treatments that she underwent, and she describes her elation at completing the swim in a Half-Iron Man Triathlon with members of her family. Quite a lady!
Lipska, Barbara K. with McArdle, Elaine (2018) The Neuroscientist Who Lost Her Mind: A Memoir of Madness and Recovery, London, Bantam Press
Lipska, Barbara K. (2016) The Neuroscientist Who Lost Her Mind, New York Times, March 12, 2016, at: https://www.nytimes.com/2016/03/13/opinion/sunday/the-neuroscientist-who-lost-her-mind.html
Audiobook is available here: https://www.audiobooks.co.uk/audiobook/neuroscientist-who-lost-her-mind-my-tale-of-madness-and-recovery/330349
I Studied the Brain but Lost My Mind, World Service radio broadcast featuring Barbara Lipska: https://www.bbc.co.uk/programmes/w3cswl4q