TERRY GROSS, host:
This is FRESH AIR. I'm Terry Gross.
For people with family members who are schizophrenic, paranoid and violent, there are often no good options. My guest, Mira Bartok, ran out of options with her schizophrenic mother in spite of the social workers, the brief institutionalizations, and the attempts to become or appoint a legal guardian for her mother.
In order to have a life and live in safety, she changed her name to Bartok so that her mother couldn't find her. Her mother was homeless for about 17 years, but for the last three years of her life she lived in a women's shelter that is now named after her.
In the new book "The Memory Palace," Mira Bartok describes what it's like to have a mother who is disconnected from reality. The memoir is also about Bartok's own traumatic brain injury from a car accident, which left her with memory loss and difficulty retaining new memories.
Bartok has written many children's book. "The Memory Palace" is her first book for adults.
Mira Bartok, welcome to FRESH AIR. I'd like to start with a reading from the book, and this is a reading about the car accident and the neurological impact it had on you and how it relates to your mother. So if you would read that excerpt for us.
Ms. MIRA BARTOK (Author, "The Memory Palace"): Yes, I will.
When the truck hit, I was in the passenger seat, leaning over, looking for a cassette. The man driving my car, who suffered whiplash in the accident, was a guy I was dating at the time. We were on our way home from my sister's house in northern New York.
The truck driver, who must have fallen asleep, swerved toward the right and tried to put on his brakes. The next thing I recall was a pair of white gloved hands reaching in to pull me out of the car. I remember a blur of blinking lights and the feeling of hot lava dripping down the back of my head.
When I eventually told my mother about the accident, I said that I suffered from memory loss, mostly short-term but some long-term memory as well, which isn't that common with traumatic brain injury. I didn't tell her about the strange sensations of lost time that one doctor thought might be temporal lobe seizures, or that I no longer could follow directions, that I didn't know how to leave a tip and had trouble reading, writing and doing just about anything that required over 10 minutes of concentration, why I tell a homeless woman who slept at the airport that it felt like it was raining inside my body and ants were crawling up and down my legs. My mother thought there were rats living inside her body, aliens in her head.
GROSS: Thanks for reading that. That's Mira Bartok, reading an excerpt of her hew memoir, "The Memory Palace."
Did it help you understand your mother at all to have neurological issues of your own after the accident?
Ms. BARTOK: Oh, absolutely, especially in the way that it was very hard to - and it still is hard to filter out sound coming in from other places, for instance going to a restaurant and hearing a lot of noise or sitting at a dinner table with a lot of people having different conversations.
And I know for my mother, you know, it would be 10 million times, it would have been 10 million times worse. But things like that really made me understand her a little bit better.
GROSS: And with your mother, she always had voices in her head that she couldn't filter out.
Ms. BARTOK: Right. I don't - you know, I think at the end of her life the doctors told me that she was probably about 90 - 90 to 95 percent delusional. So she was just constantly hearing voices.
GROSS: Let's - before we talk more about your mother and her schizophrenia, let's start with the medical issue that you've been dealing with. What are some of the long and short-term memory problems that you have now?
Ms. BARTOK: Oh, I forget - no.
(Soundbite of laughter)
Ms. BARTOK: I - sometimes I think the most - the largest impact is the short-term memory problems that affect me as a writer, because I'll write something one day and I have no memory of writing it the next. So I have to create rather elaborate systems of recall in order to actually know what I wrote and where I put whatever I wrote.
And things like if I have a lot of distractions in the day or I listen to people talk too much, or I get really tired, then I might get lost on the way home from a place that I've always gone to that's not too far away. I forget, you know, how to get home.
So the long-term - as far as long-term memory, that has really come back a lot, and that's actually - long-term memory loss is rather rare with the kind of accident I have. However, some of the problems with my accident were probably compounded by the fact that I had some level of PTSD and had had a previous head injury several months before. So my brain was more vulnerable because of the second injury.
GROSS: Do you feel like you became a different person after the accident? When your memory was impaired, and you had to recreate ways of remembering, there were probably things that never came back to you.
Ms. BARTOK: Absolutely. In some ways, yes. But I think the thing that changed the most wasn't necessarily memory, even though obviously I had some memory impairment and still do.
It was more identity-related in that I always thought of myself as some kind of person who can endure just about anything and had boundless energy and could do several things at the same time - you know, draw while I'm listening to some language tape and learning a new language at the same time. I was very good at multitasking and was also very sociable and enjoyed spending time with a lot of people.
And so it's - I think what's been the largest change is that I just don't have that kind of endurance. I can't - I have to be pretty reclusive sometimes, which is kind of a - it's difficult for friends to understand, and family too.
GROSS: Let's talk about your mother. You describe her as: She was the mad woman on the street brandishing a knife, the woman who shouts obscenities at you in the park, who follows you down alleyways, lighting matches in your hair. Did your mother really do all those things?
Ms. BARTOK: That's the worst. That would be a description of the worst of her, of her behavior, not her.
GROSS: Including lighting matches in your hair?
Ms. BARTOK: No, that just happened to me once on a train. I was on a subway, and someone, some mentally - old woman did that me. My mother did set chairs on fire though. But I don't think she ever set anyone's hair on fire.
But when she was at her worst, she was extremely delusional and could turn toward - to violence, mostly to, in her mind, to protect me or my sister from enemies that she perceived were standing there in the room or outside the door. She would maybe threaten us in some way because she didn't want us to go outside or - you know, because Nazis might be there waiting for us.
But she was also incredibly loving. People say that a schizophrenic's nature is still there, that the nature they were born with before the illness sort of stampedes into their life. And I think, I really believe my mother, you know, had a very kind and loving soul. It's just that the illness hijacked her brain.
GROSS: She was also a piano prodigy.
Ms. BARTOK: Yeah, she was pretty - a pretty incredible pianist.
GROSS: When was the first time you realized that your mother could be violent and dangerous?
Ms. BARTOK: My first memory is in the book, and it's - I'm about five years old. And of course maybe I saw this side of her before, but I don't remember it.
It's very vague, as most memories are from early childhood, but I heard some kind of sound and laughter and just strange cackling in the living room, and my memory is really looking, peering into the living room at this woman who was my mother but not my mother sort of moving in circles, holding a knife and saying just - babbling and laughing saying - and swearing, and it was just very disturbing, obviously talking to someone who wasn't there.
GROSS: What's the closest your mother came to harming you?
Ms. BARTOK: Probably - it was probably the last - if you called a family visit. My sister and I came to Cleveland in 1990 to try to convince our mother to voluntarily agree to sign guardianship papers so that we could get a legal guardian for her and thereby, you know, therefore place her in supervised housing.
And she was so furious about this. We had already taken it to court a couple times and lost. And she came after me with a broken bottle and got very, she - I have a scar on my neck from it. She got very close to - she cut my neck, but it was a superficial cut, fortunately, because it was right in a very precarious place. But I got the bottle away from her.
GROSS: My guest is Mira Bartok. Her new memoir about having a schizophrenic, paranoid, violent mother is called "The Memory Palace." We'll talk more after a break. This is FRESH AIR.
(Soundbite of music)
GROSS: If you're just joining us, my guest is Mira Bartok, and she's written a new memoir called "The Memory Palace." It's in part about her own traumatic brain injury after she was in a car accident. But it's largely about being the daughter of a schizophrenic mother, a mother who was usually delusional and often threatening violence.
When your mother started hearing voices, becoming delusional, acting violently, there was nobody in your home to intervene. Your father left when you were four. So you, your sister and your mother ended up moving in with your grandparents, which sounds like it was no bargain.
It sounds like your grandfather was pretty violent himself and had quite a temper. But were your grandparents able to keep your mother under control?
Ms. BARTOK: No. You know, my grandfather was very ignorant about - most people were ignorant about mental illness in that era, and he was extremely ignorant about mental illness and thought she was just acting crazy and wouldn't stop.
And he had very little tolerance for her or her illness, even though I'm sure he loved her. And I also think he probably had some kind of undiagnosed illness himself, perhaps bipolar disorder or something. He had extreme - he had an extreme violent and violent streak.
My grandmother, I loved her very much, but she was pretty inept. She was pretty - you know, she was abused physically by her husband and was also kind of unhelpful and didn't - she was always afraid that the neighbors would hear about what's going on in the house.
She was always very concerned about what the neighbors would think, and that often superseded any kind of action on her part to really react in time to help our mother.
So you know, very early on my sister and I kind of put on adult clothing and really took on the responsibility of our mother.
GROSS: Were people in your neighborhood afraid of your mother?
Ms. BARTOK: They grew more afraid of her. Sometimes she was - you know, schizophrenics sort of, at least the kind that my mother had, she was a paranoid schizophrenic, and she flip-flopped between a kind of intrusive behavior that was very intense and what they call positive behavior, but it's not positive. It's, you know, violent behavior or hearing voices and all those things.
She flip-flopped between that and detachment, what they call negative behavior - catatonic, depressed, barely leaving the house for days. And when she was in that state, she could last that way for months, and then sometimes she'd come out of it.
And sometimes she - you know, my mother would be very, very sweet. And I think that the people in my neighborhood, most of the ones who lived near us were incredibly kind and were often very helpful to her, as much as they knew what was going on and helped her sometimes even when there was, you know, something that was pretty scary going on.
GROSS: So you, your sister, your mother, moved in with your grandparents. Eventually your grandfather died, and then your grandmother got very sick, and she needed to be moved to an elder care facility. And so your mother was on her own. Was that when she, like, really became homeless?
Ms. BARTOK: I placed my grandmother in this, in elder care, in '89, and then that year my mother went completely downhill, even where(ph) she was doing - it was hard to imagine her getting worse than she was, but she got worse.
And so by 1990, long series of events, but she ended up becoming homeless when she lost she lost the house that she had been living in. And then I didn't hear - I didn't know where she was for two years, until 1992.
GROSS: You didn't know because you couldn't find her or because you didn't want to know?
Ms. BARTOK: I did want to know where she was. I didn't want her to know where I was. Apparently she showed up in a friend's husband's office one day and demanded my address. But she wouldn't give hers. She wouldn't let anyone know where she was, but she gave a post office box. So that's when we started writing letters to each other.
GROSS: Now, this is something I really want you to explain because it's such a horrible position to be in. You didn't want your mother to know where you were because she could be so abusive. I mean, it was dangerous for you, yes?
Ms. BARTOK: Right, yes.
GROSS: But you loved your mother. You wanted her to be taken care of. But you couldn't be that person because you just couldn't, right? I mean, tell us why that was like an impossible situation for you, why you would not - why you thought it was like an unworkable situation to have your mother move in with you so that your mother wouldn't be homeless.
And I ask this because we all see people on the street, many of whom we know that their families tried to keep them, you know, at home, and it just, it was not possible.
Ms. BARTOK: Well, you know, when I was younger - this is in the '70s, '60s and '70s, there were like a couple community centers - one was called, I think, the Recovery Center - by our house. And my mother went there and she was learning life skills. It was for the mentally ill. And she was learning - you know, she got better care. It wasn't great, but it was, you know, it was better, and she had a place to go to and she was in a support group and all these things.
But in 1980, you know, when Reagan came to office, a lot of funding dropped for places like that. So my mother, little by little, began to lose the few support or safety nets that she had, and that the family had, to sort of - you know, my mother had this outlet that she could go to, and she could get some - she had a doctor to talk to once in a while, and she had - you know, she was learning things, how to take care of herself.
So you know, I think that the problem with so many people on the streets, it's just there's no, there's very little support system, and that was the problem for me.
You know, we - my sister and I had taken this thing to court several times to try to get her, our mother, a legal guardian, because we lived in different states. Even if we wanted to take her in, because of state-to-state law, we couldn't have. It would have taken three years, so - a three-year waiting period. And each time the court denied our guardianship request because my mother could - she could buy her own cigarettes and she could cash her own checks.
GROSS: I know there were times when you tried to get your mother committed to a mental institution and you were able to do it for very short periods of time but never for a long time. What were the problems there?
Ms. BARTOK: Well, you know, they used to keep people in mental institutions a lot longer and - as we know - and then, you know, then there was this huge release of everyone. And because I don't do memory, was it the '60s or '70s? I can't remember.
GROSS: I think it was the '70s. And you're talking about the changing of the laws for institutions, because so many of the mental institutions were so bad. They treated people so poorly. Institutionalization was seen as a very negative thing for many patients.
But then things swung in the other direction, where a lot of those patients ended up on the streets instead of in the mental institutions. So that didn't seems like the best solution. But that's the way it ended up for a lot of people.
Ms. BARTOK: That's the way it ended up for my mother. I mean, theoretically, what was supposed to be in place of those institutions, you know, were community centers like the place that helped my mother before. But those dwindled or weren't there, and so, you know, my mother got very little support from the social system that was available to her, and therefore she ended up on the street.
So you know, it was always really a difficult thing, difficult decision to try to get her institutionalized, because I knew that certainly wasn't a great thing either, and I felt like I was betraying her in some way, you know, and some of these places were just terrible.
But she would have harmed herself or harmed us. There was no real alternative. We just needed to be safe, and we needed her - we needed somebody to keep her safe from killing herself.
GROSS: But you couldn't be the ones to do that because then you wouldn't be safe.
Ms. BARTOK: No, we wouldn't be - I mean, my mother was so obsessed with my sister, Natalia(ph), then Rachel(ph), and obsessed with me, and didn't - you know, her idea was that, her master plan was that we three all go on government aid, we live in an apartment together, and we don't leave the apartment ever.
And she had already, you know, in my adult life shown up at various jobs, friends' houses. She'd call - the police would show up at my door because my mother would, you know, call the local district and say that I was being raped or murdered. She would call a hundred times a day. I mean, it was pretty horrible. I couldn't live like that, nor could my sister.
GROSS: My interview with Mira Bartok was recorded last week. We'll hear more of the interview in the second half of the show. Bartok's new memoir about her schizophrenic mother is called "The Memory Palace." I'm Terry Gross, and this is FRESH AIR.
(Soundbite of music)
GROSS: This is FRESH AIR. Im Terry Gross back with Mira Bartok. Her new memoir, "The Memory Palace," is about having a mother who is schizophrenic, paranoid and violent. Bartok's mother attacked her and tried to slit her throat. Bartok couldn't get her institutionalized or have a legal guardian appointed to make decisions on her mother's behalf.
So the police almost suggested to you that you change your name and phone number and not tell your mother because she was driving them crazy 'cause she'd always call the police to go check on you. Is that how you got the idea of changing your name?
Ms. BARTOK: I think it probably was, first, my sister's idea. My sister was in school - graduate school at the time (technical difficulties) when the policeman made that suggestion to me. She knew that she was going to be out looking for professional jobs, you know, teaching English at a university and there was no way she was going to have our mother show up and - in her classroom and, you know, she didn't want to lose her job. I think it was my sister's idea, but you know, definitely the policeman, after he said it, I immediately got an unpublished phone number and wrote my mother a letter saying that I had moved, but I actually hadn't. This was before she ended up becoming homeless but it was very close to that time.
GROSS: So you changed your last name to Bartok after Bela Bartok, the composer.
Ms. BARTOK: Yes.
GROSS: Who your mother probably introduced you to because she loved classical music and had been a piano prodigy. When I say introduced you to, I mean to his music, not to him as a person.
Ms. BARTOK: Right.
GROSS: So you sever ties with her. You changed your phone number, didnt know your address. She didn't even know your name anymore. But you had a post office box for her. And then you had a post office box for yourself so she could send you letters that you would get through a friend who would check the post office box.
At this point, you knew that she was homeless, that she was spending some time living on streets and parks, in airports and, you know, I'm sure like it's hard to live with that, even though you knew you couldn't live with her. How much did that eat at you? How difficult did it make your life to know what hell her life was?
Ms. BARTOK: I thought about it every day. I mean I lived my life and I made art and I had jobs and I had relationships. But, you know, there was a part of me that kept things rather private about that because, you know, you're at a party and people are having conversations and somebody turns to you and says, what's your family like? What does your father do? What does your mother do? She's homeless and she's schizophrenic. I mean, that's cheerful. So, you know, I mean I learned to change topics very quickly and just sort of, in some ways, compartmentalize that part of my life. But I thought about her all the time, constantly, and was always thinking about what I could like, you know, I how is keeping warm? You know, what does she need? And I also was constantly sending her art supplies because I knew she had started drawing and - so I was always thinking about her.
GROSS: Mira, I'd like you to read a letter that your mother wrote you while she was homeless and when you were communicating through each other through - with each other through post offices boxes. This is a letter that she sent to you on the back of a Dunkin' Donuts bag.
Ms. BARTOK: Mm-hmm.
GROSS: And she sent it with a postcard from a Marc Chagall museum show, because she loved going to museums, even when she was homeless. Would you read the letter for us?
Ms. BARTOK: Sure. (Reading) Dear daughter, I am trying to adjust to life with a white cane. Many years ago, there was a man in Cleveland who made a point of a rap tap tapping by my way but I am a little slow in the game of Simon Says. These days I keep a journal. There is always the continuous anxiety of blanking out again, and I need to be reminded of myself constantly. One can't always rely on who was there, but on one's self.
Within your sphere of interest, the painting you made for me in the 1980s called "Selective Forgetfulness" is missing, stolen or confiscated. I have some complaints going, as you can imagine. By the way, when you translate the message in the above dots, you will learn nine letters of the Braille alphabet. Note to your artist: the color pencils you sent are being used by yours' truly. I thank you. PS, when I have something nice to write about, I'll let you know. Love, Mother.
GROSS: It's such a disjointed letter of kind of delusional non sequiturs. What do you make of a letter like that? What reading did you infer from it?
(Soundbite of heavy sigh)
Ms. BARTOK: Well, on the one hand, if I separate myself emotionally -which is hard to do - from a literary point of view, you know, when I go through my mother's letters and her journals, I think they are like some kind of incredibly lyrical, hallucinatory bit of literature. I mean I just think they're absolutely beautiful and very inspiring to me.
On the other hand, I know that my mother saw signs in so many things, in numbers, in pictures, in things that she heard on the radio. And so, you know, I try to read into what was she thinking? Is the man in Cleveland she's talking about? You know, what is Simon Says? You know, what does that mean to her? So I start getting into this sort of investigative mode in my brain, trying to understand my mother. And you know, after reading 17 years of her diaries, I find, I realized I have a little bit of a better sense of how she saw patterns in the universe. But still, you know, this is really a lot of things firing at once in her brain and no one will ever know. So I guess I find them terrifying and beautiful, and often very funny. My mother was not without a sense of humor.
GROSS: If youre just joining us, my guest is Mira Bartok and she's the author of a new memoir called "The Memory Palace," and it's about her mother who was schizophrenic, delusional, often violent and for many years homeless. The memoir is also about Mira Bartok's own urological problems after a car accident that left her with traumatic brain injury and memory problems.
Let's take a short break here and then we'll talk some more.
This is FRESH AIR.
(Soundbite of music)
GROSS: If youre just joining us, my guest is Mira Bartok. She written a new memoir called "The Memory Palace." It's part about being the daughter of a schizophrenic woman who was often violent and almost always delusional. And it's also about her own memory problems after she was in a car accident that left her with traumatic brain injury.
For the last three years of your mother's life she lived in a shelter for women in Cleveland. And when she was diagnosed with terminal cancer, the staff of the shelter tracked you down, and they called you, and you went to see her for the first time in 17 years. She was, at this point, about 80 and very sick.
Ms. BARTOK: Mm-hmm.
GROSS: How was she different from what you'd remembered? And in her frail state, was she still violent?
Ms. BARTOK: No. I, you know, my sister and I both feel like we got the sweet part of our mother back. She was - and she was very, you know, she was medicated while she was in the hospital, medicated for her schizophrenia as well. And she was so happy that we were both there. My sister came a couple days after I arrived. And she didn't say that much. I mean, by then she was so ill and it was very hard for her to speak. But I felt, it was actually very peaceful to be with her.
My only regret - well, no, my one of many regrets, but one regret is that I wish that someone had sent me a photograph of her in her elder years, because I think that I might have tried to make, you know, physical contact with her sooner. In my mind she was still this really aggressive person, and dangerous person, where in reality, the last few years of her life, I think she was pretty, you know, infirmed in some ways.
GROSS: Was there any part of you that was - and forgive me if this comes off the wrong way - but was there any part of you that was relieved when your mother died, because her life had been - so much of her life had been so painful; she had been so threatening towards you when you were younger and you were so worried about her in all the intervening years?
Ms. BARTOK: Absolutely, as horrible as that might sound to some people. I mean my biggest nightmare was that she would die - I mean imagine this - you have a mother out there and she gave birth to you and she loved you and you loved her, and you have no idea where she is and you won't even know when she dies or where she dies - and you'll never know. I mean, the fact that I - it was an amazing gift to be given this short period of time at the end of her life to be with her and to know where she was, and to know that she was well cared for. She was very loved at the shelter, the women really watched out for her, and the women came every single day. And so, when she died, it was...
GROSS: Came to the hospital to see her.
Ms. BARTOK: Yes. I mean every day, you know, her bed was circled by these women from the shelter who called her grandma, even though she insisted she was sometimes 40 years old and sometimes 50. But, you know, she, I was really, even though I was just grief stricken when she died and felt like I had no, not enough time with her, I definitely was relieved. And just to know that I, you know, I was there at the end and no longer had to think about this anymore.
GROSS: The women's shelter where your mother spent the last three years of her life changed their name after she died and they changed it to her name. It is now called The Norma Herr Women's Center. And on the website for the center it explains why. It says: Norma was an elderly woman whose courage in the face of homelessness and mental illness served as an inspiration to other residents and to staff.
What does it mean to you to hear that?
Ms. BARTOK: It's pretty extraordinary. I mean we recent - my sister and I went in October - the end of October for the reopening of the shelter. The shelter was in pretty bad condition and then got some Obama stimulus funding and a couple of the grants and they were able to rebuild the shelter. Now it's just beautiful. And there was the ceremony, my sister and I were the keynote speakers and there were people from the mayor's office and commissioners, and it was very emotional. You know, this place that, you know, I think my mother had been the oldest resident. It was, I'm still very (unintelligible) about it.
(Soundbite of laughter)
Ms. BARTOK: You know, I'm just very and I, you know, and I've maintained, I keep in contact with them and now I'm going to go there and next month, early next month and do a poetry workshop with the women there. And it's just, we, you know, I have this ongoing relationship with them and it's really great. I mean, you know, who knew that a little frail, very, very ill homeless woman would have her name on a building, a large building like that in her honor, this one little person? It's pretty incredible.
GROSS: I see so many homeless people in the street who are talking to themselves and who are arguing with people who don't exist in reality or at least don't exist next to them. And, you know, I always wonder like, who are they? How did they end up living on the street? Do they have family? What's their back story? Who were they? What were they like before they became ill? When you run into somebody homeless on the street who is mentally ill, do you try to interact with them? Do you try to give them money or food, or what do you do? I think we all wonder what are we supposed to do in the face of this?
Ms. BARTOK: I think most of the time, unless I'm in a hurry, and I just - and I know that sometimes these interactions can actually take time. And I know it sounds terrible, but sometimes I'm in a hurry or I have to do something that requires a lot of concentration and I know that sometimes one tiny little interaction with someone and listening to them will totally throw me off. But most of the time, if it's cold out I go up to them. I ask if I could get them something hot to drink or something to eat. If it's hot out I go, sometimes I don't even ask. I just go and get them some cold water. I, you know, one thing you dont think about that often is a lot of people living on the street don't hydrate enough. They're not drinking enough water, especially in the hot weather. And sometimes people don't even let them into their stores to get water, so that's always a concern.
So I try to make eye contact. I ask them how they're doing. My first impulse is to get them some nourishment and then it really depends on how it goes, because sometimes I'll give money, sometimes I don't. Sometimes I just check, do you know where the nearest shelter is? I try to be aware of where the local shelters are. I treat them like a human because, you know, they are human and every one of those people had a family at some point, had a mother, had a father. Perhaps they have children. They were loved at one time. And so I think I just try to do my small part in asking - I mean in just giving them a little dignity for the day.
GROSS: Mira Bartok, thank you so much for talking with us.
Ms. BARTOK: Thank you, Terry.
GROSS: Mira Bartok's new memoir is called "The Memory Palace." You can read a excerpt on our website, freshair.npr.org. Our interview was recorded last week.