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A neuroscientist’s battle with brain cancer prompts a personal reflection on identity and the disease process

The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery

Barbara K. Lipska with Elaine McArdle
Houghton Mifflin Harcourt,
2018
208 pp.
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In The Neuroscientist Who Lost Her Mind, Barbara Lipska shares the story of her firsthand experience with metastatic brain cancer. In doing so, she provides readers the opportunity to foster a “sense of connection with others who suffer” and to combat continued stigmatizing of mental illness. Lipska’s evolution as scientist, patient, and person explores the physiological basis of mental illness, while uplifting the importance of personal identity. True as it is that “[w]e are our brains,” her story is evidence that rich personal narratives offer value to an empirical pursuit of neuroscientific investigation.

Throughout the book, Lipska leverages her explicit understanding of the brain’s complex connections and the relationships between functional areas to weave together tactile and real scenes and characters from her life. Her project succeeds across a range of criteria. She is adept at employing her vast technical knowledge as a neuroscientist, combining discussions of her own basic research, conducted at the National Institute of Mental Health (NIMH), with human research in clinical settings. She also provides a rich sensory experience by translating her ordeal into experiences the reader might feel, taste, and smell.

The book begins with a description of the functional areas of the brain, highlighting their responsibilities, tasks, and anatomical locations. It does so by referencing the reader’s own external anatomical features, including the forehead, hairline, and top of the skull: visible landmarks set atop hidden, complex systems. The neuroanatomical survey continues with a description of spatial tasks performed by the parietal lobe that “tells us where we are in relation to things around us, and where our bodies start and end.” Passages like these highlight Lipska’s ability to fit complicated ideas into modes amenable to a lay audience.

She does well to introduce these systems to make the point that mental illness is “abnormal brain structure and function,” yet she learns that knowledge of the anatomy is no replacement for experience. “[I]t is my own suffering that truly taught me how the brain works,” she ultimately concludes.

COURTESY OF BARBARA K. LIPSKA

Lipska (center left) skis with family one month after undergoing surgery to remove a tumor from her brain.

Lipska’s prose soars when narrating her experiences, as in a scene in which she describes an exam she underwent to troubleshoot a blind spot in her field of vision—an early sign of neurological trouble to come. To illustrate the division of labor between our sensory inputs and the processing of our brains, she vividly describes her ophthalmologist, “her pretty young face,” she continues, “her glittering earrings almost touching my ears and cheeks.” Recalling this mundane experience, now cast in a new light, Lipska tacitly invites the reader to imagine herself or himself in the examination room.

Lipska’s neurological symptoms were not only sensory; her personality changed as well. Her assertiveness became more direct, her skepticism was more pronounced, and her instruction demanded more urgency: traits of a scientist, amplified by illness. We, the reader, experience her slow departure from reality alongside her, never realizing the moment her account of events becomes unreliable. While reading one of these scenes in the familiar setting of my local coffee shop, I was forced to withdraw from the book and give pause, before returning, with enthusiasm. The eerie similarity between the reader’s experience and Lipska’s cannot be overstated.

Throughout the book, Lipska compares her experience to that of her research animals. “It’s likely that communication between my prefrontal cortex and my hippocampus is failing, which is unpleasantly reminiscent of the prefrontal cortical connections I disrupted in rats to study schizophrenia,” she writes at one point. Eventually, she determines that her best chance at survival is an unproven immunotherapy treatment still in the early stages of testing. She has become, she notes with irony, “an experimental rat.”

Her neurological symptoms, we learn, were caused by inflammation, a side effect of the experimental immunotherapy. Once the swelling was treated with steroids, her symptoms abated, returning Lipska from the brink of madness. With the hope of total remission and the anxiety of recurrence, she accepted a new label to incorporate into her identity: survivor.

This grappling with identity—and Lipska’s gradual acceptance that the sense of self is both the outcome of, and the struggle with, our own physiology—may be the book’s greatest contribution. Through this realization, we may connect with our own suffering to more firmly grasp our sense of identity.

About the author

The reviewer is a philosopher of science, a freelance writer, and an individual living with glioblastoma based in Indianapolis, IN, USA.