Imagine a loved one, the rock of your family, displaying in short order the symptoms of mental illness and dementia; a well-adjusted, accomplished person turning obstreperous, mistrustful, and compulsive, confounded by basic arithmetic or a daily commute, and ruminating on imagined slights, mind racing obsessively. Then gradually these behaviors recede; equilibrium and faculties are recovered, and your relative is restored, albeit wearier and warier. This is the story, harrowing yet redemptive, of Barbara Lipska, stricken at 63 with a form of brain cancer. The Neuroscientist Who Lost Her Mind, cowritten with Elaine McArdle, is the tale she lived to tell.
As the title indicates, Lipska isn’t your average brain-cancer patient. She directs the National Institute of Mental Health’s Human Brain Collection Core. The “library of brains” she presides over is used by scientists working to better understand and treat mental illness and dementia. In her professional life, Lipska confronts the brain as corporeal object: A donated brain arrives in a “large white cooler” that might otherwise hold “beer and steaks for a football tailgate party.” Hefting one in her hands, “it feels like firm Jell-O.” Removing slivers for examination, she’s advised “Pretend you’re slicing bread or steak.” The resulting sections resemble “cold cuts in a grocery store’s deli case.” Yet this “ordinary-looking piece of meat” is the seat of consciousness and cognition and, when it misfires, the author of tragedy—a third of the organs in the collection come from suicides.
When she notices a blind spot in her field of vision in January 2015, Lipska knows after previous bouts with breast cancer and melanoma—both of which can spread to the brain—to suspect a brain tumor. And when, undergoing intensive treatment for the multiple tumors doctors find, she comes unglued, she can—in retrospect at least—speculate from her actions about the broadly affected regions of the brain and itemize the maladies to which they correspond.
Her behaviors are bizarre, transgressive. One morning Lipska gets a notion to dye her hair. “Now!” After applying the colorant and affixing a plastic cap, she’s gripped by the impulse to go for a run. But the prosthetic breast she’s worn since her mastectomy suddenly seems like too much bother. “I need to leave now!”
She makes it home and is exasperated more than anything by her husband Mirek’s discomfiture.
These and other episodes are reconstructed after the fact. Lack of self-awareness can be characteristic of mental illness and, in the moment, Lipska is unreflective about her actions. The problem lies without—family members conspiring against her, the pest-control guy trying to poison her, a takeout pizza laced with toxic plastic. Later, as if emerging from a fugue state, she has scant recollection of her “breakdown,” before gradually retrieving its mortifying contours.
If Lipska’s book is about “what it’s actually like to lose your mind and then recover it,” it’s also about a new frontier in cancer care and the vertiginous trajectories for recovery being opened up—Lipska’s whole trip to the threshold of insanity and back again is telescoped into two hectic months.
Just a few years earlier, the only course of action for a person with her diagnosis of metastatic melanoma in the brain would have been to set one’s affairs in order. The largest tumor is excised, others are irradiated, but this is an exercise in whack-a-mole, and there’s a limit to how much she can withstand. However, Lipska also receives immunotherapy, a new addition to the cancer-fighting toolset that, instead of attacking tumors directly, marshals the immune system to fight them. The approach is bringing a small but growing number of patients with certain aggressive advanced cancers back to life.
Imbued with scientific insight, Lipska’s description of the carnage inside her head is terrifying:
An apparent immediate effect of the immunotherapy is that her cancer goes into overdrive; an MRI finds approximately 18 tumors. These are extinguished following further radiation plus therapy that targets her cancer’s genetic mutations.
A recreational endurance athlete, Lipska hews to a routine of arduous workouts to fortify herself. Which is to say, at bottom, The Neuroscientist Who Lost Her Mind is about a sheer bloody-minded will to survive.
Lance Armstrong is no one’s idea of a role model these days, but few would deny his tenacity or instinct for self-preservation, and Lipska takes her cue for managing her care from Armstrong’s memoir about his recovery from testicular cancer that had infiltrated his brain and lungs.
She summons a warrior mentality. After an MRI gives her the all-clear—she’s free of new brain tumors and eligible for an immunotherapy trial—Lipska seeks a second opinion. This finds tumors missed earlier. To divulge them would mean withdrawal from the trial and further radiation, after which she would have to undergo another MRI to verify her eligibility; by then the trial might be full. So she keeps the news to herself, placing herself at mortal risk by enrolling in the trial—the untreated tumors may grow dangerously “inflamed” under immune assault.
“I’m making this decision for myself, by myself,” she writes. “Nothing is going to stop me from entering this clinical trial. I would rather take my chances than die without trying it.” Awaiting an IV hookup, she feels “like a paratrooper jumping off a plane into the dark night, hoping that my parachute will open.”
This and other aspects of her story—especially the unstinting, borderline-maniacal devotion to exercise—point to the warping effect of mental illness. Lipska’s behavior is not an aberration; she remains herself, just a grotesque “caricature.”
“Throughout my life, I’ve been quick to react, independent, confident, and stubborn,” she writes. “But now, these qualities are reaching an absurd level.”
Still, wracked with pain, the adamantine resolve trembles or is at least leavened by something approaching acceptance of whatever fate holds.
Watching a documentary about chanteuse Nina Simone—herself afflicted with bipolar disorder—Lipska is stalked by “a death thought.”
“I cling to Mirek for support and think about my own impending death.” Stirring from the couch, she appends a “do not resuscitate” order to her end-of-life instructions. The “passion to stay alive” coexists with a “readiness to die.”
Shortly afterward, clarity and the balance of her mind begin to return.
* * *
Lipska writes movingly about how her debility upset family dynamics as her husband and children tried to adapt: “It was hard for them to recognize my personality changes, especially because I insisted I was fine. Even as the changes became more obvious, my family remained in denial because the new normal was so disturbing.” Especially troubling is their accession to her insistence on driving—she’s a menace to herself and others. But she’s obdurate and heedless.
Today, she exists, “at best,” in the terminally provisional state of “remission,” her cancer in abeyance for now.
At a gathering, Lipska’s doctor baldly tells her and a roomful of fellow advanced melanoma survivors, “Several years ago there would be no luncheon like this . . . because most of you would likely be dead.”
Pondering the term “survivor,” Lipska finds the dictionary definition—someone who perseveres and “remains functional and usable”—resonant. Her mind and body battered, she wonders if she meets this standard. If this memoir is any guide, she more than measures up to it.
