What happens when a neuroscientist gets brain damage

Three years ago, neuroscientist Barbara Lipska, PhD, lost her mind. She was one of the top researchers in her field, a triathlete with several marathons under her belt, and a very involved wife, mother, and grandmother when she contracted melanoma, which spread to her brain. Within months, her sense of judgment, emotions, decision-making skills, even the ability to love were all gone.

Dr. Lipska recovered and, as a neuroscientist, is now one of the extremely few who knows what it’s like to be on both sides of symptoms caused by conditions such as schizophrenia, bipolar disorder, and dementia. She details her experience in her new memoir, The Neuroscientist Who Lost Her Mind.

Here, Dr. Lipska gives a first-person account of what those terrifying, chaotic months were like, what she learned, and what she wants everyone to understand about mental illness.

Keep reading to see what happens when a neuroscientist “loses her mind.” 

The first realization that something was really, really wrong

This dramatic experience started in 2015 when I couldn’t see my hand. It was a completely normal day. I finished my morning workout, drove the 20 miles to work, and logged on to my computer. But as my right hand glided across the keyboard, it…disappeared. I moved it back over toward the left side of my keyboard, and it came into view. That’s strange, I thought. But as I kept moving it from left to right, it kept disappearing each time when it reached the right side. As a neuroscientist, my first thought was, Oh my, it’s a brain tumor.

But of course that seemed too terrifying to be true. My thoughts raced as I drummed up another explanation. Perhaps the antibiotic I was on had a side effect that impaired vision? I Googled the medication and when I read that in extreme cases, it could cause hallucinations, I felt a wave of relief. So that must be it then.

I went about my work, visually impaired. I talked to my colleagues as if their faces hadn’t disappeared and acted like everything was okay. But later, when I had a doctor examine me, he looked worried. “You have to go in and get some scans done,” he told me. I had plans to go to a conference the next day called Winter Brain, which combined science lectures with afternoons of skiing—and I really didn’t want to miss it. But the doctor and my husband convinced me to postpone the trip by one day to get the scans done. So I did. And of course I didn’t end up going skiing after all.

What it feels like to lose your mind

The scans showed three tumors in my brain, one of which was bleeding into my left visual cortex—which explained my impaired vision. I had surgery to have the bleeding tumor removed, but the doctors left the other two in because they were small. Then, I started radiation. With the extracted tumor, the doctors were able to see that melanoma, which I had been diagnosed with in 2011, had spread to my brain. Before I was diagnosed with melanoma, I was diagnosed with breast cancer in 2009. Lucky me, right?

I met with my husband and adult children so we could decide as a family what to do next. Radiation alone was not enough. The only option seemed to be an experimental clinical trial using immunotherapy, which was brand new for melanoma tumors in the brain. Immunotherapy for other tumors had already been in use for about a year. With immunotherapy, drugs are used to spark the immune system into action to attack the cancerous melanoma cells. But this was still very new, so it was a gamble. In the end, it was a gamble I made.

I had no idea I was losing it, but I suddenly became very suspicious of everyone. My husband seemed to stop loving me, my grandkids seemed terrible, and I really wanted to fire my assistant.

Weeks into treatment, horrible things started happening. My T-cells (the fighters) attacked every melanoma cell in my brain—and there were many. It turns out I had 15 tumors in my brain—not three—which the doctors didn’t learn until I was well into my immunotherapy treatment. My brain started to swell dramatically, mostly in the frontal cortex, which governs all higher cognitive functions and the behaviors that make us human: emotion, insight, judgment, decision making, loving your family—I lost all of that.

Of course, I had no idea I was losing it, but I suddenly became very suspicious of everyone. My husband seemed to stop loving me, my grandkids seemed terrible, and I really wanted to fire my assistant. In my mind, everyone else was the problem, not me. I was also very stubborn, refusing to stop working or changing anything about my life despite having a brain full of tumors. I drove to work even though I had trouble finding my seatbelt and my car banged into things because the roads seemed narrower. In my mind, construction workers made the roads narrower and I blamed them.

I reached the peak of my misbehaviors two months into my immunotherapy when I ate a slice of pizza I was convinced was stuffed with plastic. “Someone is trying to poison us,” I told my daughter. I was absolutely convinced. After that, she made me go to the doctor, though I still insisted I drive myself.

What she wants everyone to know about people with a “mental illness”

My doctor put me on steroids to reduce the swelling in my brain, and it worked right away, reducing the tumors at the speed of light. Over two or three months, I regained my sanity. The immunotherapy did ultimately keep me alive, but it had the side effect of having me “lose my mind” for a few months.

After I regained my sanity, I was terrified to think about how I was before. I couldn’t believe the way I treated my family, friends, and colleagues. And I’m still terrified because I know it can happen again. There could be cancerous melanoma cells lurking in my body that will one day turn into more brain tumors.

Almost everyone knows someone with a mental illness. It’s important to remember their actions are because of a brain malfunction. It has nothing to do with their soul.

People who have dementia, schizophrenia, or bipolar disorder all are impaired in some way that we don’t yet fully understand. Like me, they don’t realize they are suddenly turning into brutes or being demanding, not caring, or not loving their family. I feel so grateful my family never stopped loving me. Almost everyone knows someone with a mental illness. It’s important to remember their actions are because of a brain malfunction. It has nothing to do with their soul. I am actually lobbying to get the term “mental illness” changed to “brain illness,” because that’s exactly what it is.

This whole experience hasn’t stopped me from living; if anything, it’s done the opposite. Less than a year after I “lost my mind,” I ran a triathlon and am currently training for another one. I love endurance sports. They require both mental and physical strength. You have to persevere. You have to go to the finish line. I thought I was training for races, but I wasn’t. I was training for survival. And I’m here. I survived.

If you’re looking for more inspiration, see how fitness helped olympic gymnast Shannon Miller fight cancer. Plus, 4 things you need to know about cancer, according to a toxic-exposure expert.