Barbara's Reviews > The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery

3.5 stars

Barbara Lipska was born, raised, and educated in Poland before she immigrated to the United States in 1989 to do post-doctoral studies at Maryland's 'National Institute of Mental Health' (NIMH). In 2013 Lipska became 'Director of the Human Brain Collection Core' at NIMH, which secures post-mortem brains for research about the brain and behavior.


Barbara Lipska

Lipska's expertise helped her understand her symptoms when she developed metastatic brain cancer in 2015, at the age of 63. Lipska - who had previously been treated for breast cancer and melanoma (skin cancer) - realized something was wrong when she was preparing for 2015's 'Winter Conference on Brain Research' in Montana. Reaching out to turn on her computer, Lipska noticed that her hand 'disappeared' when she moved it to the right and 'reappeared' when she moved it to the left.

Lipska immediately thought 'brain tumor' - and an MRI confirmed her worst fears. The brain scan revealed three tumors in the scientist's head, one of which was bleeding.


Barbara Lipska had three brain tumors

Lipska is very fortunate to have a husband, Mirek, who's a cool-headed mathematician; a son, Witek, who's a neuroscientist; a daughter, Kasia, who's a physician; and a sister, Maria, who's a physicist and chief of therapy in the radiation oncology department at Boston's 'Brigham and Women's Hospital.'


Barbara Lipska with her husband Mirek

Lipska's family arranged for her to go to Brigham's, where the bleeding tumor was excised, and the other tumors were treated with stereotactic radiosurgery - a procedure that focuses high doses of radiation onto individual tumors. Lipska was also given steroids, to reduce the swelling in her brain.




Barbara Lipska was treated at Brigham and Women's Hospital

Within months after her surgery, Lipska felt good enough to go skiing with her family and to resume her regular triathlon training, which includes swimming, cycling, and running.


Barbara Lipska (second from left) skiing with her family


Barbara Lipska cycling

The scientist knew, however, that she wasn't cured, and that new tumors were likely to appear. Lipska decided that her best chance of survival lay with an experimental immunotherapy procedure, which primes the body's immune system to recognize and destroy cancer cells. Lipska got into an immunotherapy clinical trial at Georgetown University Hospital, and was periodically infused with powerful antibody drugs over a period of months.

The treatment helped to shrink Lipska's tumors, but also (temporarily) damaged her brain, and the scientist's behavior changed dramatically. Lipska says, "I was changing very gradually, from a loving mother, grandmother and wife, into a kind of a heartless monster. I was yelling at my loving husband. I was yelling at my beloved grandsons and my children. I was behaving like a 2-year-old with a tantrum — all the time." The scientist explains that parts of her brain - specifically areas of the frontal lobe and parietal lobe - were not working properly.


Parts of the brain

Lipska notes that, "Deep inside my brain, a full-scale war had erupted. The tumors that had been radiated were shedding dead cells and creating waste and dead tissue. Throughout my brain, the tissues were inflamed and swollen from the metastasis and the double assault of radiation and immunotherapy. What’s more, I had new tumors—more than a dozen. My blood-brain barrier…..had become disrupted.....and was leaking fluid. The fluids were pooling in my brain, irritating the tissue and causing it to swell."

Lipska's family was disturbed and worried by the changes in her demeanor, but Barbara herself didn't realize anything was wrong - even when her conduct became increasingly bizarre. Examples of changes in Barbara's behavior during cancer treatment include:
- becoming irrationally furious at Amtrak when her train was delayed, and talking about it for days, to everyone in sight.
- refusing to seek help for lymphedema (swelling) in her arm, then yelling at the therapist and storming out when she finally went for treatment.
- compulsively eating chocolates - though she normally avoided sweets.
- driving her car erratically.
- failing to recognize her regular exterminator and throwing him out of the house.
- losing her ability to do simple arithmetic.
- becoming infuriated when she 'lost' her husband after sending him to pick chanterelle mushrooms in the park.
- being unable to locate pots, pans, and utensils in her kitchen.
- forgetting how to cook (though she normally prepared dinner every night).
- and more.

Lipska explains that her symptoms mimicked those of people suffering from various kinds of mental illness, like bipolar disorder, schizophrenia, Alzheimer's, and other dementias. Barbara emphasizes that these mental illnesses are brain diseases - not moral defects - and should be treated like any other disease....like disorders of the heart, liver, or kidney.

Lipska did recover, both from the cancer and the side effects, though she's aware the 'cure' might not last forever. Still, Barbara's at peace, and very grateful to her family - as well as the doctors and other medical professionals who treated her. She says "I'm feeling great, although I am not as powerful as I used to be — both in terms of my physical strengths and emotions. I went through so much. My brain was assaulted with drugs, with radiation. I lost my vision in the left eye.....I lost some balance. I am a little disoriented spatially, so I have sometimes trouble with maps and finding my places. But, you know what? I'm alive — and that's all that counts. And I'm happy!"


Barbara Lipska with her husband Mirek

The book is both informative and inspirational. Lipska provides a brief, but instructive description of the brain and how it works, with comparisons between experimental rats and humans. And it's heartening to see Barbara travel from health, to madness, and back again.


Barbara Lipska

I'd recommend the book to anyone interested in the brain and mental illness.

Thanks to Netgalley, the authors (Barbara Lipska and Elaine McArdle) and the publisher (Houghton Mifflin Harcourt) for a copy of the book.

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