Lessons From Losing My Mind

More resources to study mental illness would reduce human suffering.

Posted Mar 07, 2018

I’m a neuroscientist. For over 40 years, I have studied mental illness, first in my native Poland, and then in the U.S. at the National Institute of Mental Health. My specialty is schizophrenia, a devastating disease in which people struggle to recognize what is real and what is not.

In January 2015, I was diagnosed with metastatic brain cancer and given four to seven months to live. Initially, there were three tumors in my brain, and later, at least 15 more. I—as well as my doctors and my family—were certain I would die soon. I underwent radiation and was treated with immunotherapy and targeted therapy. But in addition to cancer, something else was about to happen to me. As the tumors were growing, my brain began to swell.

And I lost my sanity.

Remarkably, I had the good fortune to recover. And I realized I’d been taught a special lesson. Provided with an insider's look into what it’s like to be insane, I was driven to understand as much as I could about what had happened in my own brain, and I decided to write a book about my journey, The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery, with my co-writer Elaine McArdle.

My doctors tell me it is very rare for someone to lose sanity to the degree that I did and then emerge on the other side able to describe what happened. It’s a miracle of science and excellent medical care that I’m still alive more than three years after the initial diagnosis—and even more incredible that I came out unscathed from a period of losing my mind. I want to share what happened to me so that people who themselves experience symptoms of mental illness, or who have loved ones who do, know that they are not alone.

And, importantly, I want to help de-stigmatize mental illness. It is heartbreaking and frustrating that in this day and age mental illness still carries so much stigma. It’s astonishing how many people do not realize that mental illness is a physical illness, a malfunction of the brain, just as coronary disease is a malfunction of the heart and coronary system. My brain became inflamed and swollen due to growing tumors, radiation, and immunotherapy; the swelling and inflammation wreaked havoc on how my brain functioned. Those physiological changes were the reason for my unusual behaviors; indeed, physiological changes are the cause of all mental illness. Those changes vary from one person to the next—and, speaking broadly, we don’t understand much about them—but physiological in nature they are. Yet people with mental illness and even their families are often blamed or shunned—as if they are at fault—because their illness is not recognized as a malfunction of the brain. 

This widespread fear of and ignorance about mental illness is even more nonsensical given how widespread it is. Every year, one in five adults worldwide experiences some type of mental illness—whether it’s Alzheimer’s or another type of dementia, depression, an eating disorder or anxiety disorder, schizophrenia, bipolar disorder, or some other malady of the brain. Almost all of us have a personal experience with mental illness, whether in ourselves or a loved one or acquaintance. There is a real hunger to understand more about brain function and dysfunction in mental illness, and a real need for more attention to it. And there’s a great need for more compassion for people who have it. As a result of my own personal experience, I am more committed than ever to shining a light of education, science, and compassion onto mental illness, with the hope that someday we can end the suffering that it engenders.