My mother-in-law, Barbara Lipska, briefly lost her mind. I’m not being cute. Back in 2015, Barbara experienced severe cognitive impairment that, in layman’s terms, might be called “insanity.”
Barbara is a renowned neuroscientist. At the time, she was, of all things, the director of the human brain bank at the National Institute of Mental Health, which conducts research on the brain and behavior, with the goal of reducing mental illnesses.
But her life came to an abrupt halt when she became sick with brain cancer. She started both immunotherapy and radiation treatment, and as her brain became inflamed, she lost touch with reality. She believed, for example, that the pest control man was conspiring to murder her. Ultimately, Barbara regained her cognitive functions and wrote about this experience, in 2016, in a very popular opinion essay for The New York Times and then, in expanded form, in a book titled “The Neuroscientist Who Lost Her Mind.”
After the book came out, I hosted a large public event with her at the Rubin Museum of Art in Manhattan. Onstage, I asked her, if she ever started to lose her mind again, would she realize what was happening? No, she said. What if a family member, like me, presented proof that her cognitive impairments had returned. It wouldn’t matter, she said. For years, that answer haunted me. We knew that the damage to Barbara’s brain — a result of radiation treatment — might at some point create swelling and cause the “insanity” to return.
And then it did.
Over the past year or so, Barbara’s ability to walk, talk and think has diminished, albeit intermittently. I say “intermittently” because at times she is lucid. There are moments when she is very self-aware and seems like her former self. But there are other times when she gets lost, standing in her own living room, and asks my father-in-law, “Where am I?”
Then, just to complicate matters, we embarked on a big family trip to Sicily. Looking back, the decision seems rather, well, insane. But we had our reasons. It was my father-in-law’s 70th birthday. It was his dream to bicycle in Italy, and this man, who has been such a selfless caregiver for over a decade, deserved a dream come true more than any human being I know. My own mother, in a touching act of generosity, arranged the whole thing. It was like a screwball comedy, set in a lovely seaside villa. The cast included me, my parents, my wife, our teenage kids and my in-laws. The first night, we had dinner on the patio, by the pool. That’s when everything started to go haywire.
That night, Barbara seemed more disoriented than ever. Her vision became so bad that she could neither walk nor see well enough to read. My wife, who is a doctor, became convinced that Barbara would need brain surgery upon her return to the United States to drain the excess fluid in her brain. “Maybe so,” I told her, “but why don’t you and your dad take a bicycle ride this morning. I mean, we’re here in Sicily.”
Reluctantly, my wife agreed. I promised to sit on the couch with Barbara and keep her company. We started chatting about bananas. For some reason, that morning, Barbara was obsessing about bananas. She does this from time to time: focusing relentlessly on a single, rather mundane subject.
I eventually asked Barbara if she still had interest in writing about her life and the functions of her own brain. Barbara told me that with her impaired vision, she couldn’t really see a computer screen. So, writing was very difficult. On a whim, I asked her if she would like me to interview her. We could, in effect, re-enact the event that we’d done at the Rubin Museum, only there would be no audience. Just us. Barbara seemed delighted by the idea. I whipped out my phone, hit record and started asking questions.
Jake: Do you find yourself now having a harder time keeping track of dates and that kind of thing?
Barbara: Absolutely. I usually don’t know which year it is. I have to think about it. It’s not that it doesn’t come back, but I have to think about it.
Jake: And how do you figure it out?
Barbara: I don’t know. (Laughter.) It’s like, you don’t know where things are, and you get your bag and start searching through the bag, which is full of things, and finally, “Oh, here it is!”
Jake: But it’s like a bag that’s very badly organized?
Barbara: Yes. (Laughter.) It’s very badly organized, which is not my style. I always had everything organized very precisely and very well.
And this was true. Barbara never missed a beat. Her house was always immaculate. Her exercise routines — swimming, running and bicycling — were ambitious and regimented. Her academic papers were flawless. She was smart, brilliant even, and very much in control.
I asked Barbara how clearly she recalled her former self.
“I have a clear picture,” she told me. “I was so much better and energetic and full of life. I loved skiing. I loved moving. I loved sports. I cannot do any of this. I feel robbed. It is like a thief came and took things that I loved. And it makes me very sad.”
She said this matter-of-factly, very much like the scientist that she still is. Barbara is also unrelentingly optimistic. She told me that when, for example, she gets lost in her own home, she doesn’t allow herself to get upset because the emotion only heightens her disorientation.
In the past, Barbara had a way of dominating her environment through a mix of charisma and sheer willpower. For me, as her son-in-law, this wasn’t always easy. At large family gatherings, dinner was served according to her clock, the music had to play at a certain volume, and the lights had to be just so.
As we sat on the couch in Sicily, I reminded Barbara of this. She laughed at these memories and at herself. It was a sweet moment, for many reasons, including the fact that we were inhabiting one of those moments of lucidity when Barbara seemed like her best self.
I observed to her that in recent years, she seemed calmer, that she no longer insisted on always doing things her way.
Barbara: Maybe because I understand now that I cannot be in control.
Jake: And you seem to accept it. You don’t fight it.
Barbara: No. Because my brain — whatever is left of it — tells me that no matter what I do, I can’t change it. I’m not in control, so I have to listen. I’m more tolerant, that’s for sure. I see it in myself. Don’t you think so?
I told her yes, and I added that this observation sounded suspiciously like enlightenment. She laughed and the irony was apparent: She had to lose her mind to find wisdom.
Our conversation continued for quite some time until, finally, my wife and father-in-law returned from their bicycle ride. My wife looked enormously relieved that no disaster had occurred in her absence. “We’re totally fine,” Barbara said, placing a reassuring hand on my wife’s arm. “We were just talking.”
Upon our return from Sicily, Barbara had surgery. The surgeons installed a shunt in her brain to drain the fluid. The procedure seemed to work. Within two weeks, she was able to read again. I emailed her a transcript of our conversation. She read it eagerly and told me she had no memory of what we discussed so she was, in effect, experiencing our conversation for the first time. “I found it fascinating!” she told me.
Apparently, the “thief,” as she had put it, had robbed her of so much, but it had not taken her curiosity. Or perhaps it was that Barbara, in her tenacity to remain Barbara, had refused to let it go.
The post How My Mother-in-Law Lost Her Mind and Found Herself appeared first on New York Times.
