When she was a young girl, Consuelo Walss-Bass’ mother Eugenia unraveled. Eugenia began hearing and speaking with disembodied voices, locking her children in the basement, chasing them with a belt, sometimes beating them violently. Eugenia grew up in Mexico, but moved with her husband Rodolfo to the United States shortly after they were married. She knew almost no one in some of the cities where the family lived, and her husband was often away tending to his OBGYN patients or out in the evenings with friends. The stress of raising her children in relative isolation became too much for Eugenia to bear. The children handled their mother’s illness the best that they could, trying to avoid her when she was in one of her moods.
Then a second tragedy struck. Consuelo’s youngest sister Paty—beautiful, gregarious and creative—began to fall apart when she was a teen. At first, she was just failing her classes, having trouble making friends, getting bullied by her peers, but then on a fateful family trip to Orlando, Paty had a mental break. She never fully recovered. Eventually, it became clear not only that Eugenia had schizophrenia but that Paty had it, too. The rest of the siblings were spared: Consuelo, Jenny, Leo and Rudy all went on to have successful careers and families.
Read more: “The Faulty Weathermen of the Mind”
Consuelo often wondered why foul luck had singled out her sister Paty, a question that has come to animate her career for over 30 years. Today, she is a professor of psychiatry and behavioral sciences at UTHealth Houston, where she directs the psychiatric genetics program. How could shared genetics and a shared kitchen table have left such different marks on the minds of Paty and her siblings, causing four of them to excel and the fifth to come undone?
Consuelo Walss-Bass has just published a book that tells her family’s story in intimate detail, and also attempts to demystify the current science of schizophrenia. That book is Why My Sister: A Scientist’s Search for Meaning Amidst Her Family’s Struggle with Schizophrenia. It has been published in six languages.
I spoke with Walss-Bass about why schizophrenia has eluded scientific understanding for so long, how it overlaps with other mental illnesses, what kinds of stressors are considered triggers for the disease, and how her family history and research have shaped how she parents her own at-risk children.
When did the question that is the title of your new book, “Why My Sister?” first begin to trouble you?
My sister was changing right in front of me, and I thought why? I didn’t know at the time that it was schizophrenia, though my mother has schizophrenia. But our family, and the society that we lived in, didn’t discuss these kinds of things. When I moved to the U.S. from Mexico to get my PhD—I was studying cancer at the time—my sister came to live with me for a short period, and she was a totally different person, which was very troubling. Shortly after we parted ways, I made the decision to switch to schizophrenia. It was really because of my mother, growing up with her and questioning what was happening. That’s when I started learning about the illness and understanding the symptoms. And then I thought, “Oh my goodness, Paty has schizophrenia.” It really hit me all of a sudden.
That was early on during my postdoc. I remember calling my father and telling him, “I think Paty has schizophrenia.” At the time we didn’t even know where she was. She had disappeared. He was really upset and said, “No, no, you’re wrong. Of course not.” And he says, “I live with your mother. I would know.” He would not even talk about it. I understand. He couldn’t even deal with it. But then it came to be true.
The specific question, “Why my sister?” occurred to me maybe 10 years ago, when my husband and I went to get her. Her husband had just died, so she was all alone and living in terrible conditions. When we were driving, that’s when I really started to think, “Why her, and why not me?” I have everything: a beautiful life, a wonderful husband, two boys, and a successful career. I came back from that day and I actually wrote that question down. And I wrote down my first impressions of going to get my sister. But I just left it like that for about four years, until COVID, when my father started telling me stories about my mother. That’s when I started writing, and it all came together.
What do you think the detailed narrative of your family’s story reveals or captures that a clinical account of schizophrenia would miss?
Scientists understand the symptoms very well. But it’s not really clear for family members when it’s happening in the moment. If you don’t know anything about it, you’re thinking, “What’s going on?” It’s helpful for families to have some sense of the early manifestations so that they don’t just put it off as, “Oh, it’s a teenage thing.” I think that a lot more could be done in terms of getting families to see that if there’s a family history, and your child is having symptoms, it’s worth taking them seriously. If these illnesses are caught earlier there’s a much better chance for a good prognosis in the future.
What do we know now about the specific forms of stress that can trigger the mind to break down in these psychiatric illnesses?
I think child abandonment, physical abuse and isolation. Isolation is one of the really big ones.
In a sense, these forms of stress are all related to a breakdown in your social relationships, which are so important to the mind.
Yes, and then they also isolate themselves because they start to become afraid. And that makes it worse. Having no one to talk to or to be there with them, that’s a big part of the trauma, the stress.
Some people can deal with the stress and other people cannot. That’s where the inherited gene variants come in. But we’re still trying to understand how different combinations of the 287 genomic loci associated with schizophrenia interact with different environmental influences to lead to the disease. Maybe what happens is that some of us are exposed to the stress at a time where our brain already can handle it. There are certain genes also that may make people more resilient to stress, such as FKBP5.
Why has schizophrenia been so resistant to scientific understanding?
I believe it’s because we have not been able to study the brain at a cellular level. These changes that are happening are very subtle. It’s not like Alzheimer’s or Parkinson’s, where you can see the changes in the brain. You don’t see that at all with schizophrenia or with any psychiatric disorder. The brain looks identical to any other brain. It’s really at the cellular level and the gene level that things are happening. We can do postmortem brain work, which I do, but that only gets us to a certain level because the cells in the brain are already dead at that point.
The latest advances in technology allow us to take these little brain biopsies, removing skin cells or blood cells and then converting them to stem cells and making those into brain organoids. That’s a technology that’s just now being used. That’s going to finally help us break through. We’ve done animal models and those are great, but these are human behavioral disorders that you can’t study in an animal. Also, the disease is heterogeneous. Even in my own family, the disease had very different ways manifesting itself in my mother and my sister. The medical approach needs to be personalized. We may get there in schizophrenia once we have these brain organoids. This is where we’re at right now. This is what we’re trying to do.
You also note in the book that many of the genes associated with schizophrenia are associated with bipolar disorder and depression, as well, making it difficult to separate one illness from another.
Yes, that makes it even more complicated. The question is, why do people with the same genes have different manifestations of psychiatric illness? That’s the complicated part. We don’t have answers to that question at all.
I was fascinated to learn that schizophrenia used to be described as childhood autism. Can you tell me about that?
Autism is very severe. You can see it right away in a child, at two or three years old. You can see they have a total detachment from any social interaction. The very extreme form of schizophrenia is that way, as well. In 1911, Swiss psychiatrist Eugene Bleuler first noticed this in schizophrenia patients, and he called it autism. Many of the genes that are found in schizophrenia are also found in autism. The question is why? Autism manifests very early on and it’s very clear, whereas in schizophrenia, it doesn’t really start to really manifest until late teens, early 20s. I don’t understand why yet, but it may have something to do with the number of genes and the combination of genes.
Do we have any methods today for catching schizophrenia before it develops?
No. It is all behavioral observation. There’s no biological test. We do know what genes contribute to the risk profile. These results have been replicated. But if someone were to ask me, for example, “Well, have you ever tested your kids to see if they have it?” I would say no. I already know they have the risk. Sequencing their genomes is not going to help me know that. But pretty soon we will be able to know which genes are doing what and how they’re contributing to the development of the disease. That’s when we’re going to be able to diagnose and perhaps predict a person’s risk for developing it.
How has your family history and knowledge of the science behind schizophrenia shaped how you parent your kids?
Even if you have a family history, it’s not a de facto sentence. What happens is that I think some people have an early episode of psychosis, but then it can resolve itself and the person comes back almost to baseline. And then the parents will say, “Oh, no, it was nothing. It’s fine. They’re perfectly fine now.” And then they say, “Okay.” When I talk to parents, I say, “Observe your children.” And this is what I’ve done with my kids. My oldest is 22, about to turn 23, and then my youngest is 19. My sister’s boys are much older. They’re fine. My brother’s children so far are okay. They’re a little bit older than my kids. They have the risk, but nothing happened. My children, I don’t want to say this yet because I’m still terrified, but they seem okay so far. But I have been extremely honest with them since they were 10. They would see their grandmother and I would tell them, “This is because she has schizophrenia and this is what’s happening. And now my sister lives with us.”
I have made sure they are very well informed, even to the point of scaring them. I have always told them, “You know what? You need to sleep. You need to regulate your stress.” My oldest, for example, he’s always like, “Okay, mama, I’m gonna start a new job. What do I need to do?” We have guidelines for handling stress because I think that’s key.
They talk to me, and I’ve had them see psychiatrists and psychologists since they were young. I think it should be normalized. There should be nothing wrong with going to see someone, even if maybe there is nothing wrong. We go see a doctor when we have a headache and maybe it’s nothing, but we go, right?
It did seem also like the kinds of stress that your mother and sister were under would have been impossible for anyone to manage.
Yes, I think the fact that my sister was left alone with my mother all by herself—that’s part of it. The type of stress and the timing of the stress is important. How often does that stress occur? Does it keep occurring or does it go away? Because if you remove yourself from a stressful situation, you can sometimes reverse the problem.
But my mother, unfortunately, her life was turned upside down when my grandfather had the illness. They were very well off, and then my grandfather had a stroke, and from one day to the next, they were broke. My grandmother had never done anything in her life, so now she goes out into the streets and has to start working. People don’t understand how hard that was in Mexico, how difficult that was in her time. And my mother was the oldest, so she was taking care of all the kids. Then my mother moved to the U.S. all by herself and with three little kids. Now I think, “Oh my God.” Having kids is hard enough as it is, but being all alone in a strange country was too much. I agree that the type of stress matters.
People with certain forms of mental illness, including schizophrenia, used to be considered, in some cultures, healers and prophets, touched by God. Why do you think this reverence was lost and replaced with stigma?
I don’t know. Some people with schizophrenia can resort to violence, which frightens people. But usually this violence manifests towards the loved ones. People with schizophrenia are actually less prone to be violent with people they don’t know than anybody else.
Do you think the stigma has loosened somewhat in recent decades?
No. When people see some violent event they immediately blame mental illness. I think the stigma has increased. For depression, and perhaps even for bipolar disorder, or other mood disorders, I think there is less stigma. But I don’t think it’s improved for schizophrenia. But there is a difference between someone having a psychotic episode and being a psychopath. The psychopath is a very highly functional person that can live in society without you even knowing it. And then they suddenly do something violent. The person with psychosis, you know right away they’re not well.
How has your book changed the way your family copes with its difficult history?
As I mentioned, we never used to talk about it. We just lived through it and did the best we could. But when I started writing the book, I contacted all my siblings and I told them I was doing this. And then they started sharing, “Oh, well, this happened.” And then they went, “No, that didn’t happen this way. It happened that way.” And that’s why I wrote in the third person. It really has been an amazing thing, especially for one of my brothers, Rodolfo. He never wanted to talk about it, and he still doesn’t. He still says, “Seeing my mother is extremely painful,” and he just won’t do it. But he and I had one of the longest conversations we’d ever had talking about things that happened, and he thanked me. In our own ways, we’ve each dealt with it differently and this book has bonded us.
My sister Paty, on the other hand, doesn’t even know about the book. My mother doesn’t know about it either. Their level of cognitive capacity is very low, and I’m not sure if I say, “Hey, I’m writing a book about you guys and your illness,” whether they would even understand it. But that was hard. I do want to tell my sister eventually because I feel like this is about her, and I want her to be a part of it. But I’m not sure how she’ll take it.
Do they understand that they have schizophrenia?
My sister does. She has even asked me, “Why didn’t you get it?” That’s hard when she says things like that. She tells me quite often that she has nothing. And I say, “I know. I’m really sorry about that.” But she does understand, and she really is doing very well in terms of trying to get out there and be part of society and do things in her own way. My mother, no, she’s never admitted that she had any problem. My father had to do things that some may consider wrong. But it’s because she would not do anything for herself and to not accept at all ever that she had a problem. Even today when I visit her, she sees me, she knows who I am, but she addresses me as if I saw her yesterday. She lives with my sister in Mexico now, but how they went to get her and are taking care of her, I don’t get that much into it because I feel like now that’s their story.
Did writing the book help you answer the question, why my sister?
It didn’t provide me with answers. No. But it did help me understand my mother in a way that I never did before. I really saw what she endured, how she did the best that she could, especially with the three oldest children. I have great memories of her as a mother until she unraveled. But it gave me a lot of empathy for her. And that’s what I hope I was able to convey. It’s two sides of the same story. It did help me heal. And I think it helped my family and my siblings as well.
We don’t have all the answers yet, but I tried to end the book with hope. I think the answers will come very soon. And that’s where I tried to leave it. People ask me, “What can you do for me now?” I say, “Oh my, I’m sorry. Right now I can explain to you a little bit what’s happening, but I can’t help you.” Science is slow, unfortunately. It takes a lot of effort and a lot of funding. But I do have a lot of hope.
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Lead Image: Петар Аризанкоски / Wikimedia Commons
