This book is an account of what mental illness looks like from the inside. But it is also a map of my evolution as a scientist and as a person. It is the story of an incredible journey, one from which I could not have imagined I would ever return. It is a story that I never thought I would be able to tell, of how I went from being a scientist studying mental disorders to being a mental patient myself – and how, remarkably, I came back.
Right from the title – The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery – and then from that quote from the introduction, "How I went from being a scientist studying mental disorders to being a mental patient myself”, I was totally intrigued: I thought this was another My Stroke of Insight: A Brain Scientist's Personal Journey; a neuroscientist who “becomes a mental patient”, gets better, and goes on to write about what it was like inside that fractured mind – that sounds so interesting to me. But that's not really what happens here: Barbara Lipska thought she had conquered melanoma, but years later, it metastasized into lesions and tumours in her brain. While undergoing aggressive therapies to kill the tumours, she spent two months not quite herself – she was paranoid, quick to anger, would become disoriented and get confused easily, and lost the ability to calculate the tip at a restaurant. Madness? “Mental patient”? I don't think so. The story was not as interesting as the buildup led me to believe, and ultimately, it wasn't very well written either (despite being co-written by journalist Elaine McArdle) .
My emotional overreactions – anger, suspicion, impatience – suggest that my frontal lobe is undergoing catastrophic changes. But these warning signs are lost on me. As an expert on mental illness, I, more than most people, should be able to see that I'm acting strangely. But I can't. Although I don't know it yet, my six tumors and the swelling around them are shutting down the frontal cortex, the part of the brain that allows for self-reflection. Paradoxically, I need my frontal cortex in order to understand that mine has gone missing.Barbara Lipska, a Communist-era Polish-born neuroscientist who serves as director of the Human Brain Collection Core at the National Institute of Mental Health in Bethesda, Maryland is perfectly poised to give insight into the science behind what happened to her: she spends her days slicing up cadaver brains, looking for the physical markers of “madness” (and in particular, schizophrenia), and when she noticed some loss in her visual field, Lipska could mentally picture the tumour that must be pressing on her visual cortex. A quick MRI confirmed the worst, and because she professionally knew or was related to all of the best cancer doctors working in the field locally, Lipska was able to receive multiple therapies (an experimental immunotherapy clinical trial at Georgetown University Hospital, radiation, steroids for swelling, and targeted therapy for melanoma cells) that made her one of the lucky few to escape a terminal outcome for metastasized melanoma. The science and the medicine is all explained adequately, but because Lipska's tumours were pressing on her frontal cortex, she wasn't aware that her behaviour had changed, and her “report from the inside” isn't particularly insightful. And because she's such an A-type, in-charge, rule-the-roost boss/wife/mother, no one in her circle was willing to confront Lipska over her more alarming behaviours: allowing her to continue driving herself to work after banging up her car, driving wildly over the freeway, getting lost on a familiar route; allowing her to go out for her solo morning runs despite getting lost, losing inhibitions about her personal appearance, even becoming incontinent; continuing to run a prestigious medical facility despite an increasing inability to read and retain information from emails and frequent mental distractions that would send her running out of her office to attend to something “important”.
Kasia doesn't tell me until much later, but it deeply pained her to see me so disoriented, so altered, from the sharp-minded and accomplished person I used to be: her sharp-witted mother, the one who taught her math and logic as well as the importance of honesty and how to enjoy her life. She doesn't want our roles to change. She doesn't want to be a physician examining my symptoms and observing my strange new behaviors in an attempt to understand what's wrong. She wants her loving, fun, competent mama. Not this confused, angry, self-absorbed impostor.Honestly, between a self-important tone and her specific behaviours – she's concerned about being able to continue training for an Ironman competition, which smacks of the most out of touch sense of privilege; she lied about the presence of existing tumours in her brain that would have excluded her from the experimental immunotherapy clinical trial (thus skewing the study's results and taking someone else's spot); she bemoans getting a takeout pizza after her last round of immunotherapy because even when she was getting chemotherapy for breast cancer many years earlier, she always cooked dinner from scratch every night; gave away the cosy pjs a friend gave her after her mastectomy because she didn't want to think of herself as in need of comfort – Lipska is just not very likeable or relatable. No acknowledgment is made that she was incredibly fortunate to have had the right connections to get cutting edge therapies – all paid for by her insurance company – and the ski trips, biking in Hawaii (and entering a footrace there on a lark), even the big house she shares with her husband, having two hour dinners every night, splitting a bottle of wine as they enjoy the forest view and each other's company, reinforces that Lipska's life is not like your life; it's hard to like her or understand her.
As if from some previous life, as if from the deepest fog of perception, images of my recent past begin to emerge. I'm regaining my hold on everyday life and on reality. It's like I'm clawing my way up from a black hole and slowly beginning to recognize my surroundings and see the sun. And I'm starting to realize how deep that hole was.And on the other hand, Lipska did face down a terminal diagnosis and lived to tell the tale; I have plenty of empathy for that; for the effect that all of this must have had on her obviously loving family. Just don't call what happened to Lipska “madness” – that seems a strategy to sell some books. (For anyone who wants just the basic story, it was first published in this article in The New York Times.) I wish her well.
