Brain Tumors Caused This Neuroscientist To Lose Her Mind
"I became a monster, basically, in my own body, with my own personality exaggerated to the point it became a caricature of myself."
In early June 2015, Barbara Lipska went on a run. She's a triathlete and marathon runner, so it wasn't an unusual thing for her to do. "What was unusual," she tells me, "was that I went running with hair dye squirted in my hair that I decided to put on right before the run. I went out and just put a plastic bag on top of it."
She also didn't wear her typical running clothes, choosing loose and revealing clothes instead. She got lost in her own neighborhood, even though she'd run that route many times before. She ran for about two hours. When she got home, the hair dye was dripping down onto her clothes, and the plastic bag was dried up on the top of her head. Lipska says her husband was shocked when he saw her.
"What happened to you?" he said.
"And I was like, 'What?' I could not understand it," Lipska says. "I peeked at myself in the mirror, which was in the hallway. I didn't notice anything weird. This was very characteristic of my behaviors at the time. I could see things, but I didn't reflect upon them. I didn't have any reflections about anything at all. No introspection. No insight."
Lipska didn't have any insight because she had over 20 tumors growing in her brain. Now in recovery, she can remember her behavior clearly: how odd it was and how little she realized it at the time. And Lipska is particularly adept at recognizing how damage to the brain might affect a person. She has spent her life studying the neuroscience of mental illness, and is the director of the Human Brain Collection Core at the National Institute of Mental Health. Yet, even with this background, she couldn't accept when she first began to exhibit signs of a brain tumor.
In January of 2015 her doctors discovered that melanoma had metastasized into her brain. Her brain became riddled with tumors, mostly in the frontal lobe, and began to change her personality in eerily similar ways to the very diseases she has spent her life studying.
Slowly, she tells me, she lost her mind, and her grasp on everything that made her, “her.” She writes about her experience in a new book, The Neuroscientist Who Lost Her Mind, out today. I talked to her about what it was like to have an illness that affected her character so fundamentally, and now that she's been treated, how it feels to look back and remember her odd behavior.
What was the first symptom that you noticed?
The first symptom was related to my vision. It was not related to my mind, so to speak. I went to work and I tried to turn on my computer, and all of a sudden, my hand disappeared from my visual field when I moved it to the right, to the lower right quadrant.
I was terrified, but I had to process this information. I did not know immediately that it was related to a tumor in my brain. I couldn't even think of this possibility at the time. I did these exercises of moving my hand left and right, left and right, and it appeared, disappeared, appeared, disappeared ... and then I put my head on the desk and started thinking.
And then the terror hit me: The horrific thought that it may be, and possibly is, a brain tumor. But, I dismissed this thought and tried to find out other explanations. I was at the time on antibiotics, on doxycycline, for something minor, and I started Googling doxycycline and found that, indeed, in some cases, it can cause visual problems. I was kind of relieved. Not completely, but kind of. I still ran to my family doctor after several hours. He did some basic tests, and he told me, "No, no. It's not in your eyes. It must be in your brain."
Eventually your symptoms progressed to the mind, what were those? And because of your unique perspective in researching mental disorders, how did those symptoms match up with the mental disorders that you studied?
It turned out later that I had additional brain tumors in the brain. Many of them. Over 20 altogether. We didn't know about it at the time. My behavior started changing several months after this initial visual problem, about May, June of the same year 2015.
I started acting strangely, but it was gradual. I didn't change from one day to another or even one week to another. It took several weeks of gradual craziness, I would call it, to escalate. I never had auditory or visual hallucinations or thought disorder, which are characteristics of schizophrenia, the most characteristic features of schizophrenia.
But I was detached, I was aggressive, I lacked empathy. I was very suspicious. And I couldn't remember things. I was getting lost in familiar places in my own neighborhood. I lost inhibition, and I lost emotions, which was particularly hard to take by my family. But at the time I didn't realize that that's what happened.
What was an interaction with your family that seemed off, behaviorally?
I didn't realize I behaved the way I behaved. I know only in hindsight. Hearing from my family who described all my responses and my behaviors, I realized I was horrible. How could I act that way? I was yelling at my husband. I was yelling at my beloved grandsons and my children who I'm very close to and I talk to them almost every day, if not every day. I was sure that everybody else changed but not me.
I lost insight into my actions. And I only regained them by interviewing my family after. I remember the facts, but I didn't remember any emotional signatures of my behavior. I was convinced that they were weirdly behaving.
That’s something difficult to imagine, for someone who has never been through it: how can you change but not realize it?
This is the most terrifying part of this experience, that I was not aware how horribly I was acting towards my family. And now I understand a lot more of that. It must be terrifying for a family to lose the person they know and love, and instead have a caricature of this person, whom I became. I became a monster, basically, in my own body, with my own personality exaggerated to the point it became a caricature of myself.
You use an analogy in the book to talk about this, and refer to a children’s fable, which one is that?
Yes, it’s a fairytale. I remembered it so vividly because it made a huge impression on me as a child. I read it in Polish when I was maybe 8, between 8-10 years old. It's titled, The Snow Queen by Hans Christian Andersen.
Kai and Gerda were childhood friends living their happy childhood in their very cold country, when a mean troll broke his mirror and one of the pieces of the mirror pierced Kai's heart, turning into heartless monster. Gerda misses him and decides to save him. Kai was taken to the Snow Queen's palace somewhere in the North Pole. Gerda goes there with love and devotion and brings him back home and, because of her love, this piece of mirror is removed, and he is the same as before. It really spoke to me because my family was so devoted, caring, and supportive of me. And I behaved like this Kai after his accident.
How did this whole experience give you a new perspective on your research?
Only in the hindsight I could realize that some of my abnormal behaviors would be similar to those of people with various mental disorders. I was behaving similar to people with dementia. Aggression, suspicions, lost memory ... very tragic kind of symptoms, especially for the family.
How exactly did the tumors cause these changes in you?
It's really hard to box any kind of complex behaviors to particular brain regions, but I know that I had the largest tumor in the frontal cortex, including the prefrontal cortex, which is the main node for higher cognitive function, including emotion, insight, all these things.
So, the frontal cortex absolutely regulates many of these, as well as the prefrontal cortex, which was also included in my areas of swelling and inflammation. The parietal lobe in particular has been linked to dyscalculia that I also had, which is inability to do arithmetic. I couldn't do even simple multiplications or divisions.
Did this change how you think of your identity and your personality, if it can be altered in such a fundamental way just by a tumor pressing on a certain area?
Yeah, it is scary. I realized that my personality is not set in stone as I thought it is. I thought I was a moral person with high standards, highly educated, knowing this or that. I thought I knew all this, but I realized that everything can change. It may change because I may have new tumors in my brain, which, of course, scares me very much. But it may also change because I can age, like in illnesses that are characteristic of elderly people, like Alzheimer's or dementia. I don't know if it is complete change of personality. I think it is like becoming a little bit like a caricature of yourself. A little bit or a lot, depending on what happens in the brain.
The most important message I got from this is that mental problems, whatever the origin is— mental illnesses that we don't know exactly what the mechanism is or, in my case, where we do know that tumors were affecting me—they're all brain disorders. They come from the brain, physical problems in the brain.
How is your recovery going?
I was treated with radiation, steroids, immunotherapy, targeted therapy, I got a lot of different drugs over all these months and years. It took a long time to recover. I didn't recover completely, unfortunately. I still have problems with balance, with vision. The vision problems are related to after effects of radiation, which happened much later. I still have a little bit of problems with memory and spatial disorientation. But most of these problems come from after effects of treatment and not the tumors themselves, strangely. But if not for the treatment, I wouldn't be alive, so I take it.
Your brain went through a lot in treatment. Are you still the same person as you were before this?
I think I am. I changed some, that's for sure. But we all change, even if it's just as we age. I changed more than if I just aged, I think. I'm more introspective because of all these experiences that I had. I'm definitely more tolerant, and more empathic. in general I became more empathic towards people who have serious illnesses, all kinds of them, including, of course, brain disorders. And I'm especially empathic towards people who suffer not only from mental disorders, but people who suffer because they are not the same as before. Even if they may not be seriously ill or seriously effected, I understand that it must pain them hugely that they cannot do things that they could before.