Amanda was only 4 years old when her mother left home.
Her father then took care of her.
The girl – who lived in Sao Paulo, Brazil – did not know what was happening but she had a hunch.
Years later he would learn that his mother, Cecília, suffered schizophreniaAnd it was precisely a psychotic outbreak – one of many – that caused him to leave the house.
After undergoing treatment, the mother returned. Amanda was already 8 years old. She had to meet her again but also take on the responsibility of supporting her in the most critical moments as she grew up.
Now, Amanda Marton -journalist and editor of the magazine Anfibia in Chile, the country where she resides-, decided to tell her family story in the book “I didn’t want to look like you” (Penguin, 2024), an intimate story that addresses not only his relationship with Cecília but also the prejudices, myths and stereotypes that surround the disease.
The text also incorporates scientific information, interviews with experts and testimonies from other people who have been affected by schizophrenia.
In conversation with BBC Mundo, the Chilean-Brazilian journalist reviews some episodes from her recent publication, delves into her own fears and warns of the enormous lack of knowledge about schizophrenia in the world.
Why did you decide to tell your story?
The starting point was when I discovered at the age of 20 that, as my mother’s daughter, there was a 13% chance that I would also have schizophrenia. And according to all the studies, if I did not have a psychotic episode before I turned 30, the chance of it happening after that was very low, 1%, almost at the level of the rest of the population.
There, without wanting to, I became obsessed with the subject.
I started reading a lot about mental health from different angles: scientific, literary and artistic.
When I was approaching 30, I started to feel like a hypocrite. Because as a journalist, I believe in the power of stories and I see the positive impact that publishing them creates, and I felt like a hypocrite telling other people’s personal stories but not my own.
And that’s when I started to feel motivated to write. In the process of writing, I realized that I was wrong about many things, that I wanted to break down certain taboos, but I myself had several taboos.
In your book, you say: “I want to do and say everything I need to do before I’m 30, just in case, in case my mind fails, in case something happens.” How did you experience those years of uncertainty?
I went into a major frenzy before I was 30 because if I had a psychotic break it would be very difficult to be a reliable journalist.
I worked in several places at the same time, I wanted to do everything, I read compulsively. I would say that I acted in an even deranged way, as if in an effort not to be, so to speak, crazy.
You are now 31 years old, which means you are already past the age limit that studies say…
I must confess that when I turned 30, I initially had a feeling of emptiness. It’s like when someone is going through a very important conflict and that conflict ceases to exist. There is relief, of course, but there is also a feeling of emptiness, of saying, “What now?”
But it allows me to live more lightly because schizophrenia, although it will always be a central element of my life, I do not want it to be the main element of my life.
When I think of my mom, I don’t want to always think of her as a woman with schizophrenia. My mom is much more than that.
Going back to your mother’s story, how did it all begin?
I genuinely believed that my mother’s first psychotic break had been when I was 4 years old and that was why she had left home.
As a child, I could tell something was wrong because I would receive letters from my mother asking about my sisters, but I don’t have any other sisters… I remember that as the first breaking point of my naivety in childhood.
But then, doing family research for my book, I realized that the outbreaks had started much earlier. In fact, the first outbreak was when she was pregnant with me. Knowing that was very powerful because I thought that maybe everything started during the pregnancy process, and then I was the culprit… I don’t know… it’s a mystery.
It was also very painful to realize the taboos that existed in my family and how little information they had… they didn’t know how to act. This once again vindicates the idea of writing this story because it is the only way to learn and break down myths.
At what point did you know that Cecília had schizophrenia?
First, the doctors said it could be a case of depression, then that it could be any psychotic outbreak related to bipolar disorder.
My father told me that she was even treated with lithium, but lithium is not used for schizophrenia.
My mother had just received her first diagnosis when I was 4 years old and was hospitalized. This had its consequences at an internal and family level.
You were 4 years old when your mother left home. What memories do you have of that time?
Before she left, there were times when I would pull away from her. I wouldn’t let her, for example, cuddle with me in bed. I think I could tell something was wrong.
I remember that there was a kind of smell of illness, a mixture of cigarettes, her perfume, the cream she has always used, but also a smell of lack of care. When a person is in a psychotic episode, they tend to neglect themselves.
And I feel like that’s the smell that’s fresh in my memory.
I remember very well the day she left. She came up to me, got down to my level and said, ‘I’m going to go see your grandmother.’
I asked him to wait for me, ran to my room, picked up some pencils and a handkerchief and handed them to him. Then he left and never came back.
Several years later, during those years when she was not there, she returned that painted handkerchief to me.
In the book you say: “Sometimes I think that neither I nor my father fully existed between 1997 and 2001,” which were the years when your mother was not around. Why?
Neither I nor my father remember me asking about her during that time. I think that to some degree I was aware that I didn’t have to ask because something was wrong.
We moved forward, of course, but my mother’s presence was always absent.
I remember that at school they made me prepare presents for Mother’s Day. It was incredibly painful. It probably happens to millions of children in very different situations…
I really feel like we don’t fully exist, because we always exist with the shadow of my mother’s absence. There are no photos from those years either. There is a blur in our history.
During that time, could you see her?
Every so often my mom would show up, but my dad had changed the house key. Then arguments would start. She wasn’t well at the time, but she always found ways to communicate.
He would send me letters in beer or guarana cans that he would throw out the window. I knew I shouldn’t show them to anyone. So I would save them and read them when my dad wasn’t home.
There came a point where my grandparents went to court because they said that my mother needed to see me. So they made an agreement in court so that I could go to see her at my grandparents’ house from time to time.
In your book you quote some psychiatrists and psychologists who talk about how the absence of the mother affects children. And many say that it has a devastating effect on personality. How did it affect you?
To this day I still can’t figure it out completely. It’s a question that I have been wondering about for a long time.
A psychology student told me that she felt like I wanted to be the perfect girl, that I never wanted to make a mistake because there were already a lot of things going on in my family.
And it makes sense to me. I was indeed very diligent in my studies, I always had a scholarship because I was doing very well. There was a search for perfectionism to calm down all the chaos that was around me.
What was it like when your mother came back? How difficult was that return?
There is a date that has remained etched in my memory for the rest of my life: July 31, 2001.
That was the day my mother came home. And I remembered it very much. In my childhood diaries I found that she mentioned it and my childhood friends tell me that I kept repeating that my mother was coming.
I also remember having that feeling as a child, of feeling a little guilty because she had left and not wanting her to leave again.
It was difficult for my father too. After four years, he had to put his life and relationship back together. He was very scared. My mother, for example, couldn’t make me a chocolate cake that only she knew how to make because my father didn’t trust her, he didn’t know if she was okay.
So there was a process of family readjustment, of regaining trust.
It’s also about learning to get to know each other, because a 4-year-old girl is different from an 8-year-old girl. I had to introduce my mom to a lot of my friends because they didn’t know her.
As you say in the book, you had to deal with your mother’s psychotic episode for the first time on your own in 2013, when you were 20. How difficult was it for you to deal with that situation?
The crisis of 2013 was very, very painful. It was a turning point. My mother had been fine, but when I went to Brazil to see her on summer vacation, I realized that something was wrong.
Until one Christmas Eve she asked me about my sisters and I remembered the great trauma of my childhood, because when I was 4 years old I realized that something was wrong with my mother precisely because she asked me about non-existent sisters.
I decided to take her to the hospital even though she was very upset about the situation.
That was the first time I heard someone say that my mother had schizophrenia. Until then, I had never been told the word directly.
And I remember the doctor told me that she had to be hospitalized and I didn’t want to. I preferred to take charge.
In the book you say that you were not afraid of the mental effects of schizophrenia or of shock therapies, considering the possibility that you might develop schizophrenia like your mother. What were you afraid of then?
Prejudices, going through life feeling like there are prejudices against you. My mother lost friends for having psychotic episodes, because they didn’t understand her. Being treated with condescension is something that stinks to me.
And it’s not necessarily because I care too much about what people think, it’s because that has direct consequences in our daily lives, in not having a job, friends, or not being able to develop in different areas. In that sense, I think my mother is very brave and very strong, very resilient. I don’t know if I could do it.
I was also afraid of being a burden on my partner and my parents, making them suffer because of this.
And finally, motherhood. I would not have had children – and this is a highly personal decision – if I had developed schizophrenia. It was a decision I had made because I did not want my child to experience something similar to what I had experienced.
Do you think there is a lack of knowledge in the world regarding this disease?
Yes, very much. And it is another of the reasons why I decided to write a book. It drives me crazy when people use the term ‘schizophrenic’ to describe a person or a situation. Because it reinforces stereotypes too much.
For example, it is believed that people with schizophrenia can be violent. This is not true. Not all people are. All scientific evidence shows that rather than being violent, they suffer a lot of violence because of their condition.
I would love to see us get to the point where people with schizophrenia can say it without being judged or abandoned and rejected by society, but I still see that as a long way off.
It used to be said that 1% of the world’s population had schizophrenia. Today, the World Health Organization (WHO) has updated the figure and says that one in every 300 people in the world suffers from schizophrenia. That’s almost 25 million people worldwide, which is a lot.
If we have such a figure, why aren’t we talking more about schizophrenia? I feel that there are many prejudices that still need to be broken down.
In the last sentence of your book you say that you are no longer afraid of being like your mother…
I didn’t want to be like my mother in many ways. But in the process of researching and learning about her story, I realized that there are many things in which we are similar.
And I would love to be more like her in many other ways. She is a more patient, less confrontational woman. I would like to have her sweetness.
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