The Neuroscientist Who Lost Her Mind

I’m running and running and running. For hours, I’ve been running. I want to get home but I have no idea where that is, even though I’ve lived in this neighborhood for twenty years. So I keep running.

I’m roaming these tree-lined streets in suburban Virginia at a fast clip, wearing my usual outfit a tank top and running shorts. I sweat as my pace increases, faster, then faster still, my heart pounding but my breath even and unhurried as I sail past large homes with two-car garages and bicycles parked in driveways.

It’s the end of spring 2015 and the beginning of what will become a particularly hot and humid summer. The grass on the immaculately trimmed lawns is still green and lush. Pink and white peonies are in full bloom, and all around me azaleas explode in a rainbow of colors. I’ve jogged this route hundreds of times over the past two decades. I should recognize each maple tree and camellia bush on each street corner, and every gash in a curb where a teenage driver took a corner too fast. They should be landmarks as familiar to me as anything in my life. But today it’s as if I’ve never seen them before.

When my husband and I bought our home here twenty-five years ago, just two years after leaving the grimness of Communist Poland, this normal American suburb seemed a dream come true. What luxuries it contained! Settled into our new home, we quickly adopted a middle-class American lifestyle, complete with regular meals of Chinese takeout and buckets of ice cream indulgences that were non- existent in Eastern Europe.

One day, I saw a photo of myself arms chubby and dimpled, thighs spread across my chair and was shocked into a major lifestyle change. I needed to get more exercise, and I began to run. Not one for minor shifts in my life, I decided I would enter a race as soon as I was able.

At first, I couldn’t jog a single block. Within a year, I was running three miles. After two years, I signed up for my first race, a six-mile competition where I finished at the top of my age group. Since then, my entire family has become dedicated athletes. Runners, cyclists, and swimmers, we’re always training for one competition or another.

And so, each morning, I run.

A creature of routine, I always start by taking my German made prosthetic breast from the shelf in my bathroom. I’ve worn the breast ever since undergoing a mastectomy following a battle with breast cancer in 2009. Fashioned from high-tech plastic, it is flesh colored and feels like a real breast, and it is proportioned to match the breast on my right. It even has a tiny nipple. Engineered for athletes, it’s light and has a special adhesive on the underside to hold it on to my body. Every morning before my jog, I slap it into place on the smooth, flat skin of my left chest before donning my clothes and sneakers. And then I’m off.

But this morning—this morning—began differently.

After pouring my usual glass of water, I headed into the bathroom and peered at myself in the mirror.

My roots are showing, I thought. I need to dye my hair. Now!

I mixed the dye a brand of henna from Whole Foods that gives my hair a funny purple tint that I love in a small plastic cup, then squirted it onto my scalp and spread it over my head. I pulled a plastic bag over my skull and tied it with a little knot on one side to hold it in place.

I must hurry. It’s urgent—urgent!—to get outside and begin running!

I grabbed my shirt and shorts and headed back into the bathroom. I looked at the breast on the shelf.

No. Too much trouble. It weighs me down. I’m not going to spend precious time on stupid things like that.

I quickly pulled my tight-fitting shirt over the plastic bag on my head. My body was noticeably lopsided without the prosthetic breast, but I didn’t think twice about it.

I need to leave now!

Purple-red dye oozed down my face and neck as I sprinted out of the house and down the street.

Now, as I run along in the morning heat, the dye spreads over my shirt and stains my asymmetrical chest.

The streets are almost empty in our sleepy neighborhood. If any of the few people I do pass are surprised by my strange appearance, I don’t notice. I glide along, absorbed in my own internal world.

After an hour I begin to tire and I am ready to return home. But my neighborhood looks strange. I don’t recognize these streets. I don’t recognize these houses.

I have no idea where I am. So I keep moving.

It’s preposterous that I could get lost in this familiar place, but that fact barely registers in my mind. With no plan for where I’m headed, I simply continue to run.

For another hour or more, I jog along, misshapen and covered in gore. I’m oblivious, unaware of anything amiss. I just run and run, my thoughts drifting into open spaces and big skies.

Somehow, I finally come upon our two-story Colonial. I open the door and find myself in the cool, dark hallway. Tired and sweaty, I take off my sneakers and socks, which are completely soaked.

On my way upstairs, I catch a glimpse of myself in a mirror. My head is caked in sweat mixed with hair color, the plastic bag plastered on top like a weird swimming cap. Streaks of purple dye, long since dried to black, have crusted in thin rivulets down my neck and upper arms and all over my shirt, accentuating the sunken left side of my chest. My face is deep red from exertion.

Nothing strikes me as unusual. I continue past the mirror up the stairs.

In his home office, my husband, Mirek, is sitting at his computer with his back to the door. When he hears me enter the room, he says, “You’ve been away a long time. Good run?”

Then he turns to me with a smile and freezes. “What happened?” he exclaims.

“What do you mean?” I say. “It was a long run.” “Did anybody see you like this?” He seems shaken.

“Why would I care if someone saw me? What are you talking about?”

“Wash it off,” he says. “Please.”

“Calm down, Mirek! What are you going on about?” But I head into the bathroom to do as he asks.

What’s wrong with him? Why is he acting so strange?

I emerge from the shower clean and relaxed. But something nags at me.

The man I love is alarmed. But why?

Mirek’s behavior should be a red flag, a clue that something is terribly wrong. But a moment later, the unpleasant thought simply slips through the cracks of my broken mind and is gone.

I am a neuroscientist. For my entire career, I have studied mental illness, first in my homeland of Poland and then, since 1989, in the United States, at the National Institute of Mental Health (NIMH), a division of the National Institutes of Health (NIH) in Bethesda, Maryland. My specialty is schizophrenia, a devastating disease whose victims often have difficulty discerning what is real and what is not.

In June 2015, without warning, my own mind took a strange and frightening turn. As a result of metastatic melanoma in my brain, I began a descent into mental illness that lasted about two months, a bizarre tailspin that I couldn’t recognize at the time. I emerged from that dark place through a combination of luck, ground breaking scientific advances, and the vigilance and support of my family.

I’m a rare case; I lived through a terrifying dive into brain cancer and mental illness and emerged on the other side able to describe what had happened to me. According to psychiatrists and neurologists medical doctors who specialize in the brain and nervous system it’s highly unusual for someone with such serious brain malfunction to be successfully treated and return from the shadowy world of mental impairment. Most people with as many brain tumors as I had and the serious deficits they caused simply don’t get better.

As frightening as my breakdown was, I regard it as a priceless gift for a neuroscientist. I studied the brain for decades and conducted research in mental illness, but my brush with madness gave me first- hand experience of what it’s actually like to lose your mind and then recover it.

Every year, approximately one in five adults worldwide experiences a mental illness, from depression to anxiety disorders, from schizophrenia to bipolar disorder. In the United States, mental illness affects nearly forty-four million adults each year, and that number does not include people with substance-abuse disorders. In Europe, 27 percent of adults experience a serious mental disorder in any given year. Mental illness often emerges during young adulthood and lasts for someone’s entire life, causing tremendous suffering for the person who is ill as well as for his or her loved ones. A significant number of homeless and incarcerated people suffer from mental illness, and the societal consequences do not end there. Mental illness costs the global economy $1 trillion each year $193.2 billion in the United States as people who would otherwise be productive are un- able to function because of their disabilities. More than just incapacitating, mental illness can also be deadly. Of the roughly 800,000 people worldwide who die each year by suicide 41,000 in the United States alone 90 percent suffer from mental illness.

The United States spends significantly more on treating mental disorders than it does on any other medical condition a whop- ping $201 billion in 2013. (Heart conditions, for which the U.S. spent $147 billion that year, rank a distant second.) But even with these resources and the tremendous efforts of dedicated scientists and physicians, mental illness remains deeply enigmatic, its causes generally unknown, its cures undiscovered. Despite the overwhelming body of research on mental illness to which new findings are added almost every day, we scientists still don’t understand what happens in the brains of mentally ill people. We don’t really know yet which brain regions and connections are malformed or undeveloped or why the brain goes awry. Are people who become mentally ill destined to suffer because of some genetic predisposition, or did they experience something that broke their brains, mangled their neuronal connections, and altered their neurologic function?

Today, the data suggest that mental illness is caused by a combination of heredity and environment, the latter involving multiple factors including drug use and abuse that act in complex inter- play with one another and with our genes. But it remains exceedingly hard to pinpoint the biological and chemical processes for mental illness, in part because these disorders are diagnosed through observations of behaviors rather than through more precise tests. Unlike cancer and heart disease, mental illness has no objective measures no biological markers that we can see on imaging scans or determine through laboratory tests to tell us who is affected and who is not. In the aggregate, groups of people who suffer from mental illness may show differences in their brain structures or functions, but for now, individual patients can’t be diagnosed using conventional measures such as blood tests, computerized tomography (CT) scans, or magnetic resonance imaging (MRIs).

Diagnosing mental illness is all the more difficult because the constellation of symptoms not only varies from person to person but also often fluctuates over time within an individual. Not everyone afflicted with schizophrenia screams in distress, for instance; some people with the disease may shut down and stop communicating. Likewise, people with dementia may be attentive and engaged one minute and detached and withdrawn the next. Even more challenging, some indications of mental illness may be exaggerations of normal personality traits, making the behaviors particularly hard to recognize as pathological. With people who are naturally frank and outspoken, the lack of judgment that can accompany dementia may at first be construed as their typical bluntness. Similarly, when introverted people become more withdrawn, others may not realize that they are exhibiting symptoms of Alzheimer’s disease.

For researchers, it’s becoming clearer that specific mental disorders are not well defined categories of illness, each delineated by a distinct set of symptoms and biological indicators. The same symptoms may not even be caused by the same illness, so two people who exhibit the same erratic behavior may in fact be suffering from two completely different disorders. Or perhaps there is overlap among various mental disorders in terms of symptoms, biological mechanisms, and causes. Some genetic and clinical analyses find similarities across a wide variety of diagnoses, suggesting that mental illnesses share a common neurobiological substrate. Modern science is currently exploring this possibility.

Today, scientists are quite confident that the main site of disruption in people with mental illness is the highly evolved prefrontal cortex, which sits at the front of the brain, and its network of connections with other parts of the brain. But what these abnormalities are and how exactly the brain malfunctions in various mental problems remains a puzzle.

When a person’s behavioral changes are triggered by brain tumors, as mine were, it may seem easy to establish a cause and effect relationship between neurological factors and behaviors. Neurologists like to try to localize every problem to a particular part of the brain, and sometimes that’s more or less possible. But metastatic brain tumors—whether from melanoma or breast cancer or lung cancer tend to involve multiple parts of the brain at the same time. When you have two or more tumors, as I did, it becomes especially difficult to figure out what part of the brain is affecting what behaviors. In addition, when there is extensive swelling from tumors and treatments, the entire brain contributes to the altered behavior.

While we don’t know exactly what took place in my brain or where precisely it happened, my journey has given me an invaluable opportunity to tour the landscape of the brain. As a result, I’ve come to better understand this breathtakingly complex structure and its incredibly resilient product: the human mind.

As with everyone who suffers from mental disorders, I experienced a constellation of symptoms during my brush with madness that were unique to my case. But during my brief mental breakdown, I exhibited many symptoms described in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5), the official guide clinicians and researchers use to classify various mental illnesses. For that reason, the similarity between my experience and that of people with a wide range of mental illnesses from Alzheimer’s to other dementias, from bipolar disorder to schizophrenia is remarkable. Identifying these parallels and using them to better understand the experience and causes of mental illness is one of my main goals in this book.

I gained a deep understanding of what it is like to live in a world that makes no sense, that’s bewildering and unfamiliar. I know what it’s like to be so confused that you trust no one, least of all those closest to you, who you may be convinced are conspiring against you. I know how it feels to lose not only the powers of insight, judgment, and spatial recognition but also the faculties essential for communication, such as the ability to read. Perhaps most chilling, I also know what it’s like to be completely unaware of these deficits. It was only after my mind began to return that I learned how warped my reality had been.

After I emerged from that dark space and was given a second chance at sanity, I wanted to explore, as a neuroscientist, what went wrong in my brain. I learned that my frontal and parietal lobes which are responsible for many of our most human behaviors were malfunctioning. This helps to explain why I behaved in ways similar to people with mental illness: why I got lost in familiar places, forgot things that had just happened to me, and became angry, mean, and unloving to my family; why I became obsessed with strange little details like what I was having for breakfast while ignoring the fact I was about to die; and, most striking, why I failed to notice any of these insidious changes in myself. Even as my mind was deteriorating, I couldn’t see that I was slipping into mental illness.

In addition to providing insight into mental illnesses such as schizophrenia and dementia, my experience gave  me a greater understanding of other brain disabilities, including the mental declines that many of us encounter as we age. Many people may someday face in themselves, their partners, or their parents the bewildering mental changes I had memory loss, disinhibited and inappropriate behaviors, altered personality, and the inability to recognize these problems in oneself. The frontal cortex, the part of my brain that was most affected by my tumors and treatment-induced swelling, is one of the regions that often begin to fail as we enter our senior years (the hippocampus is another). It’s one of the many ironies of my story that if I live long enough to see old age, there’s a good chance I will experience many of the same mental changes all over again.

In the course of losing and regaining my sanity, I’ve come to identify with other people who have known mental illnesses firsthand. This sense of connection with others who suffer has spurred me to share my story. While more attention is being given to mental illness than ever before, it nonetheless continues to be stigmatized by society. Even though mental disorders are physiological in nature they are diseases of the brain, just as coronary problems are diseases of the heart the mentally ill are often treated as if they are to blame, as if they have done something wrong. Their families are frequently stigmatized as well. If nothing else, I hope my experience helps others recognize that mental illness is no more the patient’s fault than cancer is and that the best response to mental illness is empathy and a greater commitment to finding cures.

After losing my mind and regaining it, I like to think I am more attuned to other people’s feelings and troubles, that I am more understanding as a mother, wife, friend and scientist. While I believe that I’ve always been compassionate toward people with mental illness, since my own brush with madness, the quality of my compassion has deepened. I also live my life more consciously, aware of how lucky I am to be reunited with my family and able to continue my life’s work. 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 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.