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? <\/p>\n
Consuelo Walss-Bass has just published a book that tells her family\u2019s story in intimate detail, and also attempts to demystify the current science of schizophrenia. That book is Why My Sister: A Scientist\u2019s Search for Meaning Amidst Her Family\u2019s Struggle with Schizophrenia<\/a>. It has been published in six languages.\u00a0<\/p>\n 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. <\/p>\n When did the question that is the title of your new book, \u201cWhy My Sister?\u201d first begin to trouble you?<\/p>\n My sister was changing right in front of me, and I thought why? I didn\u2019t know at the time that it was schizophrenia, though my mother has schizophrenia. But our family, and the society that we lived in, didn\u2019t discuss these kinds of things. When I moved to the U.S. from Mexico to get my PhD\u2014I was studying cancer at the time\u2014my 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\u2019s when I started learning about the illness and understanding the symptoms. And then I thought, \u201cOh my goodness, Paty has schizophrenia.\u201d It really hit me all of a sudden.<\/p>\n That was early on during my postdoc. I remember calling my father and telling him, \u201cI think Paty has schizophrenia.\u201d At the time we didn\u2019t even know where she was. She had disappeared. He was really upset and said, \u201cNo, no, you\u2019re wrong. Of course not.\u201d And he says, \u201cI live with your mother. I would know.\u201d He would not even talk about it. I understand. He couldn\u2019t even deal with it. But then it came to be true.<\/p>\n The specific question, \u201cWhy my sister?\u201d 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\u2019s when I really started to think, \u201cWhy her, and why not me?\u201d 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\u2019s when I started writing, and it all came together.<\/p>\n What do you think the detailed narrative of your family\u2019s story reveals or captures that a clinical account of schizophrenia would miss?<\/p>\n Scientists understand the symptoms very well. But it\u2019s not really clear for family members when it\u2019s happening in the moment. If you don\u2019t know anything about it, you\u2019re thinking, \u201cWhat\u2019s going on?\u201d It\u2019s helpful for families to have some sense of the early manifestations so that they don\u2019t just put it off as, \u201cOh, it\u2019s a teenage thing.\u201d I think that a lot more could be done in terms of getting families to see that if there\u2019s a family history, and your child is having symptoms, it\u2019s worth taking them seriously. If these illnesses are caught earlier there\u2019s a much better chance for a good prognosis in the future.<\/p>\n What do we know now about the specific forms of stress that can trigger the mind to break down in these psychiatric illnesses? In a sense, these forms of stress are all related to a breakdown in your social relationships, which are so important to the mind.<\/p>\n 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\u2019s a big part of the trauma, the stress.<\/p>\n Some people can deal with the stress and other people cannot. That\u2019s where the inherited gene variants come in. But we\u2019re still trying to understand how different combinations of the 287 genomic loci associated<\/a> 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<\/a>.<\/p>\n Why has schizophrenia been so resistant to scientific understanding?<\/p>\n I believe it\u2019s because we have not been able to study the brain at a cellular level. These changes that are happening are very subtle. It\u2019s not like Alzheimer\u2019s or Parkinson\u2019s, where you can see the changes in the brain. You don\u2019t see that at all with schizophrenia or with any psychiatric disorder. The brain looks identical to any other brain. It\u2019s 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.<\/p>\n 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\u2019s a technology that\u2019s just now being used. That\u2019s going to finally help us break through. We\u2019ve done animal models and those are great, but these are human behavioral disorders that you can\u2019t 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\u2019re at right now. This is what we\u2019re trying to do.<\/p>\n 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.<\/p>\n Yes, that makes it even more complicated. The question is, why do people with the same genes have different manifestations of psychiatric illness? That\u2019s the complicated part. We don\u2019t have answers to that question at all.<\/p>\n I was fascinated to learn that schizophrenia used to be described as childhood autism. Can you tell me about that?<\/p>\n 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<\/a> 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\u2019s very clear, whereas in schizophrenia, it doesn\u2019t really start to really manifest until late teens, early 20s. I don\u2019t understand why yet, but it may have something to do with the number of genes and the combination of genes.<\/p>\n Do we have any methods today for catching schizophrenia before it develops?<\/p>\n No. It is all behavioral observation. There\u2019s 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, \u201cWell, have you ever tested your kids to see if they have it?\u201d 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\u2019re contributing to the development of the disease. That\u2019s when we\u2019re going to be able to diagnose and perhaps predict a person\u2019s risk for developing it.<\/p>\n How has your family history and knowledge of the science behind schizophrenia shaped how you parent your kids?<\/p>\n Even if you have a family history, it\u2019s 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, \u201cOh, no, it was nothing. It\u2019s fine. They\u2019re perfectly fine now.\u201d And then they say, \u201cOkay.\u201d\u00a0When I talk to parents, I say, \u201cObserve your children.\u201d And this is what I\u2019ve done with my kids. My oldest is 22, about to turn 23, and then my youngest is 19. My sister\u2019s boys are much older. They\u2019re fine. My brother\u2019s children so far are okay. They\u2019re a little bit older than my kids. They have the risk, but nothing happened. My children, I don\u2019t want to say this yet because I\u2019m 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, \u201cThis is because she has schizophrenia and this is what\u2019s happening. And now my sister lives with us.\u201d<\/p>\n I have made sure they are very well informed, even to the point of scaring them. I have always told them, \u201cYou know what? You need to sleep. You need to regulate your stress.\u201d My oldest, for example, he\u2019s always like, \u201cOkay, mama, I\u2019m gonna start a new job. What do I need to do?\u201d We have guidelines for handling stress because I think that\u2019s key.<\/p>\n They talk to me, and I\u2019ve 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\u2019s nothing, but we go, right?<\/p>\n It did seem also like the kinds of stress that your mother and sister were under would have been impossible for anyone to manage.<\/p>\n Yes, I think the fact that my sister was left alone with my mother all by herself\u2014that\u2019s 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. <\/p>\n 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\u2019t 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, \u201cOh my God.\u201d 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.<\/p>\n 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?<\/p>\n I don\u2019t 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\u2019t know than anybody else.<\/p>\n Do you think the stigma has loosened somewhat in recent decades?<\/p>\n 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\u2019t think it\u2019s 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\u2019re not well.<\/p>\n How has your book changed the way your family copes with its difficult history?<\/p>\n 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, \u201cOh, well, this happened.\u201d And then they went, \u201cNo, that didn\u2019t happen this way. It happened that way.\u201d And that\u2019s 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\u2019t. He still says, \u201cSeeing my mother is extremely painful,\u201d and he just won\u2019t do it. But he and I had one of the longest conversations we\u2019d ever had talking about things that happened, and he thanked me. In our own ways, we\u2019ve each dealt with it differently and this book has bonded us.<\/p>\n My sister Paty, on the other hand, doesn\u2019t even know about the book. My mother doesn\u2019t know about it either. Their level of cognitive capacity is very low, and I\u2019m not sure if I say, \u201cHey, I\u2019m writing a book about you guys and your illness,\u201d 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\u2019m not sure how she\u2019ll take it.<\/p>\n Do they understand that they have schizophrenia?<\/p>\n My sister does. She has even asked me, \u201cWhy didn\u2019t you get it?\u201d That\u2019s hard when she says things like that. She tells me quite often that she has nothing. And I say, \u201cI know. I\u2019m really sorry about that.\u201d 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\u2019s never admitted that she had any problem. My father had to do things that some may consider wrong. But it\u2019s 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\u2019t get that much into it because I feel like now that\u2019s their story.<\/p>\n Did writing the book help you answer the question, why my sister?<\/p>\n It didn\u2019t 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\u2019s what I hope I was able to convey. It\u2019s two sides of the same story. It did help me heal. And I think it helped my family and my siblings as well. <\/p>\n We don\u2019t have all the answers yet, but I tried to end the book with hope. I think the answers will come very soon. And that\u2019s where I tried to leave it. People ask me, \u201cWhat can you do for me now?\u201d I say, \u201cOh my, I\u2019m sorry. Right now I can explain to you a little bit what\u2019s happening, but I can\u2019t help you.\u201d Science is slow, unfortunately. It takes a lot of effort and a lot of funding. But I do have a lot of hope. Enjoying Nautilus<\/a>? Subscribe to our free newsletter<\/a>.<\/p>\n Lead Image: \u041f\u0435\u0442\u0430\u0440 \u0410\u0440\u0438\u0437\u0430\u043d\u043a\u043e\u0441\u043a\u0438 \/ Wikimedia Commons<\/p>\n","protected":false},"excerpt":{"rendered":"When she was a young girl, Consuelo Walss-Bass\u2019 mother Eugenia unraveled. 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I think child abandonment, physical abuse and isolation. Isolation is one of the really big ones.<\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/ie\/wp-content\/uploads\/2026\/09\/nautilus-favicon-14.png\")
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