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Barbara Lipska on Deciphering and Destigmatizing Mental Illness

by Brendan Dowling on April 6, 2018

In January 2015, doctors informed Barbara Lipska that her melanoma had spread to her brain. With her frontal lobe compromised by tumors, Lipska soon began exhibiting schizophrenia and dementia-like symptoms. The subsequent eight weeks were a harrowing ordeal for Lipska, who was unaware of the affects her illness had on her brain, and her family. Yet two months after she was diagnosed, the experimental immunotherapy doctors prescribed had successful results. With her mental health restored, Lipska applied her skills as a neuroscientist to dissect the physical affects on her brain. Her resulting memoir, The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery, co-written with Elaine McArdle, is a moving account of her illness plus an accessible exploration of the relationship between the brain and behavior. Science Magazine raved about the book, saying “Lipska’s evolution as scientist, patient, and person explores the physiological basis of mental illness, while uplifting the importance of personal identity.” Lipska spoke with Brendan Dowling via telephone on March 27th, 2018.

How did your background as a neuroscientist prepare you for your own illness?

At the time I lost my mind, so to speak, I had absolutely no awareness that that’s what happened. I actually didn’t care, so how did it prepare me at the time? It didn’t. Nothing in my life prepared me for what happened.

It was a different story when I started coming out of it, because at the time of recognizing what I went through, I started connecting the dots and understanding what had happened and why it happened. It was fascinating to me. That’s why I decided to write it, because one, for scientific fascination, but two, I wanted to share this horrifying experience with others and hopefully help them through this process.

And that lack of self-awareness that you’re describing is a medical term, right? Anagnosia?

It is a symptom of many mental illnesses, in particular schizophrenia. It doesn’t affect every patient, but probably a large majority of people in schizophrenia. It’s also present in people with bipolar disorder, depression, and of course dementia.

Some people are not aware that they’re changing. They are changing in ways that are terrifying to their families. I consider it more terrifying than somebody’s death. Maybe that’s too much of a statement, but if you see your loved one departing in parts for a long time, it is the most heartbreaking thing. That’s at least what my family reported to me.

I didn’t realize it at all, which was probably the biggest lesson in this whole experience. I knew about anagnosia before, but I had no idea that it is really not a denial, which is easier to understand. It has nothing to do with denial. It has to do with not having that part of the brain operational, and not being able to process the information that something is off. To myself, I was completely normal, completely as before. I saw that other people had changed. (laughs) It’s kind of ironic.

What was the experience of revisiting this period of your life like?

As a scientist, it was a fascinating thing for me to dissect. Actually I was so drawn to it I couldn’t stop writing about it. I also found it very therapeutic because I could process all this later. I could process the things that I barely remembered, but when I understood them better, it helped me along. It is of course a terrifying thing. I am living in fear that it can happen again and I wouldn’t know because I wouldn’t notice. I didn’t notice before. I didn’t trust anybody around me who was trying to signal that I was different. I completely didn’t see it. That’s a part that bothers me for the future. If the disease spreads and progresses to a point where I will again lose parts of my brain, I will behave the same or even lose other functions, which is also terrifying. I could be paralyzed. I don’t mind talking about it, but I know that it puts some people off that I’m talking so lightly about dying or being paralyzed. It’s not a light subject at all, but I don’t shy away from voicing it and putting it on the table because that may happen. It’s reality.

You have a really pragmatic tone in the book and that makes it easier, in a way, to read some of your more painful experiences.

It’s almost easier when we talk and communicate than try to pretend it doesn’t happen. That is the source of the stigma related to cancer and mental illness, and I’ve had both. So I hope that this book helps relieve this stigma and taboo. It’s an illness just like any other illness. It’s a disease of the brain and should be treated like any other disease.

I think this book reflects my personality. I am a very straightforward person. I don’t cover things up. I have no trouble talking about intimate things or difficult things, if they serve a purpose. So I’m glad that you find it that way, because I wanted it to be my voice. Some people may not like it, because it is too straightforward or not enough spirituality, but that’s who I am.

Knowing what you know now, what would you recommend to patients who have mental illness and their families?

It’s hard to recommend anything to the patient. I was basically detached from reality. I wouldn’t listen, I wouldn’t hear, I wouldn’t be convinced, no matter what people would say. It’s more I’m advocating for families, so they better understand what it feels like and what it is, that mental illness doesn’t really mean anything other than brain disease. It’s not some kind of ephemeral thought or upbringing or weak will or bad mood that you can turn around and change. Mental illnesses are a brain disease. Until we understand them better and are able to cure them, we just have to deal with what happens, surround patients with empathy, affection, tolerance. We, as a society, need to come up with good funding for mental illness research. We don’t have it. The National Institutes for Health is among the smallest of the institutes. Look what happened with NCI, the National Cancer Institute. I benefitted from all of that incredible research and all of that funding for over a decade now. Cancer research has a much better advocacy group—and I’m not saying it’s bad, it’s absolutely terrific—than mentally ill patients. It’s important that we continue studying these diseases. Hopefully we’ll find out what they involve, in terms of the mechanisms of the brain, and then try to cure them. It’s an ambitious goal. Mental patients, and I consider myself dipping my toe in that field myself, are asking to destigmatize it. Don’t treat it like it’s willpower, but as a real disease that needs to be cured one day.

Although the book hasn’t even come out yet, I’ve gotten so many emails from family members of people with mental illness saying they want to thank me because now they understand mental illness and that’s why their relationship with their loved ones changed. Their attitudes changed towards them because they understand what it is. So understanding is part of the success. It’s the first step at least. Understanding that this is a brain disease that we need to put all of the effort to cure. The brain is such a complicated mechanism and we know that genes are involved, that something is happening at the neural level, at the molecular level. Our tools for studying that are just evolving. It’s been such a short time.

It was my generation that DNA has been deciphered. We can now look at the whole genome in terms of sequencing it letter by letter. We’re far away from understanding what these letters do, so that’s the next step, understanding what these genes do. It’s huge work, but that’s our brain.

What’s your outlook for the future?

I am an optimist in terms of my own illness, although I know it may come back and I’m terrified of that. It actually did come back in January. I had a small new tumor in my brain, in my visual cortex, but it has been treated. I feel well and my doctors are very hopeful. I’m hopeful about the field of mental illness. It will take time. I’m sure actually that we will not solve it in my generation, but we will solve it one day. I have heard the saying that the brain is the most complicated device in the universe, including all of the stars and the constellations, because there are billions of neurons, billions of molecules. How do we study it? How do we know what is broken? It will take some time. But I am hopeful we will find the solution.

When you first began writing, you were writing about growing up in Poland. Will you ever return to that work?

No, and I have hundreds of pages of my memoir. I started writing when I realized I would not be alive soon, so it was January 2015. I felt this very strong urge to leave something behind for my my family, my children, and my grandsons so that they knew where I was coming from, what my childhood looked like, how their father, my first husband, died of melanoma. How he died, why he died, where he died and so on. I feel guilt over this, like it’s some kind of unfinished thing in my life. But I feel better now that I’ve put it down in writing and my family knows. So the rest is kind of sitting there.

But when I lost my mind and it came back, I thought, “This is so bizarre.” It freaked me out to realize what happened. I said to my son, “This other part can wait, but I have to share this with others. It is too freaky.” I might go back to that, there’s quite a bit of interesting writing there.

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