Fear, Freedom & Schizophrenia: Antonio’s Story

Preface

Dr. Luisa Sanz, founder of Mind Yr Life, grew up as the sixth of eight children in a low-income family living in a three-bedroom home. Her two brothers were both diagnosed with schizophrenia. Most of her early childhood and adolescence were draped in fear and violence. Decades later, Luisa’s eldest brother, Antonio has recently passed away after an unfortunate succession of medical complications including covid which ended his life whist putting up a fair fight to lung cancer. Antonio’s story has influenced so much of Luisa’s work and, in turn, given her clarity and vision in her life’s purpose. 

While she and her family struggled gravely, often at hands of Antonio, his struggles were immense and all-encompassing, as well. He was judged, rejected by his peers and by the professionals who were supposed to support him, and made to think of himself as worthless. While Luisa and her family lived in fear, he did too. As it turned out, many of their demons were one and the same. 

Near the end of his life, Antonio said “this illness has been so limiting that I’ve never been able to give myself to others or dedicate my life to what I’ve been passionate about: nature, guitar and studying.” During his final days, Luisa felt more clear on what she’d always known, Antonio had (and has) an incredibly profound purpose, and that’s to elevate the voices and improve the experiences of people who are suffering like he did. 

He has a message for society: “one day, you’ll understand too but, in the meantime, just try being that little bit more caring and that little bit less judging.”

And one for those who are struggling with mental health like he did: “we’ve got each other, care for each other and accept each other; we understand our struggles. We’ll never give up on ourselves, we’ll keep going no matter what.”

Antonio’s purpose is clear, and this is his legacy. We’re pleased to share Antonio’s story. 

Introduction

I’m Dr. Luisa Sanz. I’m a Consultant Child and Adolescent Psychiatrist. I've been working in psychiatry for nearly 27 years now and I've spent most of my career working with young people, but also with adults. I'm also the founder of Mind Yr Life which is a personal project that I started a year ago. My aim is to eradicate stigma and to advocate for people with mental health problems.

I'm also the sister of two brothers that have schizophrenia. I’m the sixth of eight and they are the first and the fifth in the family. So I grew up since being seven with mental health problems at home. My eldest brother, Antonio, passed a couple of weeks ago.

Why do you think that it's important to share the story of your brother, Antonio?

The story of my brother is about people evolving. You know the saying “people don't change?” I don't agree with that at all. I think people absolutely change. My brother is an amazing example of people evolving and growing. He is also an amazing example of determination, never giving up, and resilience. 

Because he suffered with schizophrenia and he suffered from the stigma surrounding that, he's also a fantastic case to expose why stigma can be so harmful, and why people need to change their attitudes and their perspectives.

Can you describe your family dynamic when you were young?

As I said, I'm the sixth of eight brothers and sisters. We were a big family. My dad was the one working and he had a labor job. We were of quite a low social class, quite poor. Regardless, we were always reasonably happy and very close up until my brother started with what's called the prodromal symptoms of schizophrenia. Those prodromal symptoms often predate a full blast psychotic presentation. When he started presenting those symptoms he was 16. 

My dad never understood what was happening, he has to this day never understood what mental illness is and he was quite harsh with my brother; he saw my brother as a threat. It seemed that the less understanding he showed, the more my brother was rebelling. 

When I was about 7 years old, violence became the way of communicating at home. Physical violence between my brother and my dad were a daily occurrence. When my brother became psychotic and lost touch with reality, the severity of his aggression and violence increased considerably. 

Throughout my childhood and adolescence, we lived in fear. Knives were very often used to threaten: at three o'clock in the morning we were having to run out of the house because my brother was chasing us.

While we were living in fear, there was no understanding or empathy towards my brother from my dad or our neighbours (not much from myself either) and there was very little support, if any, from professionals.

PART 1: Losing Control 

What were the first signs of your brother’s illness?

Often schizophrenia begins with a period of time where the individual presents quite withdrawn, is very thoughtful, doesn't really know what's happening, and is just in a state of confusion without necessarily knowing that they’re confused. During this time they will be doing very little, if anything, withdrawing from their normal activities like school, for example. This was the case with my brother.

At home, my dad would get very angry with my brother and call him lazy, accusing him of doing nothing and telling him to get a job. My brother was incredibly intelligent and even up to the very end of his life he never lost his passion for learning. So, in hindsight, it was obvious that he was becoming very ill. 

My dad took his behaviour as a as a challenge to his authority. Did didn’t want a lazy, disobedient son. This dynamic between them created more and more disharmony in the family; sadly, it was attempted to be resolved through violence and physical force.

Do you remember when you realized that your brother was struggling?

When the illness started I was only seven, so all I really remember is my brother laying down on the sofa for hours on end, my dad calling him names, and my mom in the middle trying to keep the peace. That went on for some time. 

From there, I remember my brother simply losing touch with reality and becoming psychotic. He began saying things that weren’t real. For example, he went to the United States to visit relatives and when he was coming back he had said that someone put a gun to his head and that there was going to be a terrorist attack that he knew about and things like that. That’s when my mother realized there was something very seriously wrong. 

When he came back from the United States, straightaway went to the doctors and asked for help. He was referred to a therapist and this went on for quite some time. He got to a point where it was unsustainable, he was very psychotic. It was then he saw a psychiatrist who started him on medication. 

When he started medication, it made him much better very quickly. At the time he had both visual and auditory hallucination, so fortunately, he responded very well to medication. And all those delusional ideations and those hallucinations stopped pretty quickly. He was left with what we call the negative symptoms of schizophrenia, which are the more withdrawn behavior, self-isolating, quieter, no motivation, absorbed in his own thinking, inability to work towards goals like others might. When he began medication, he was 19 years old, a full 3 years after his initial presentations.

What do you think that the impact was on the family and on your early childhood?

We lived in a three bedroom apartment. My parents had a bedroom, my two brothers had another bedroom, and the six sisters shared another bedroom. If there was a fight between my dad and my brother, which was very common, the whole family would be impacted by it. Even though my brother responded to medication, there was huge lack of understanding and very, very little support. So my brother would go to see the psychiatrist once every three months and the medication would sort of contain the psychosis and the psychotic symptoms, but the rest was still ongoing and there was no support for that. 

My brother really didn't understand what he needed to do or what was happening. My dad didn't understand the limittions of schizophrenia, or a mental illness, and wasn't tolerant or accepting of it at all. 

Antonio was terribly violent. I always feared my dad would be killed by my brother. I lived my life waiting for the day that my dad would be killed, or one of us. 

I remember one occasion he was on the sofa trying to strangle my dad, and he was really strong, and I jumped on him and tried my hardest to pull him back. When he eventually left my dad alone, he came to me. He grabbed me on the neck and told me that if I ever tried to stop him again, he would then kill me too. There was another occasion when he held a knife to my neck. The constant fear was just unbearable. Things were the same day after day, month after month, year after year. And we just felt so hopeless, like nothing was ever going to change. I really believed my dad would die at the hands of my brother. My dad is now 91, so I was wrong, thank God.

PART 2: The Passage of Time 

The biggest lesson for me is the damaging impact of negative attitudes towards mental health problems and towards differences, not just mental health, it's about anyone that is different. The lesson is about not making assumptions, not being that quick to judge. 

Interestingly enough, my dad has been the one most upset since my brother’s passing. Though he has dementia now when he remembers, he’s completely heartbroken and he keeps saying “my son, my son, my love, my life.” Now with dementia, he’s no guard and is letting his true feelings out, his love for him. 

My dad's ignorance made him behave the way he did; constantly making wrong assumptions, instead of being much more accepting, understanding, tolerant, and just compassionate.

That’s my aim in sharing this story, to inspire to seek understanding before ever judging and potentially making things worse.

What role did this experience play in your decision to become a psychiatrist? 

I always was an inquisitive girl, and living with mental illness from a very young age made me wonder what was happening, what was wrong, and why my brother was behaving that way. 

Originally, I wanted to be a teacher like my mother. I love the sharing of information, the learning aspect of life. I wanted to be a teacher up until I was 16 and I went to the United States to learn English. I stayed with my mom's sister who was married to a Spanish psychiatrist, my uncle. 

Unfortunately, he died of lung cancer only two months after I arrived. But in the two short months I knew him, he really inspired me. His career in psychiatry offered me the piece of the puzzle that I was missing. I always wanted to know more about mental illness and about what drives human behaviour. While my time with him was short, it really influenced my life. I looked up to him. He understood mental illness, we had conversations about people's behaviours, and I just wanted to be like him. 

The day he died, I was with with him. That day, I knew I would go to medical school and I would specialize in psychiatry.

My career in psychiatry has really confirm my experience as a child, and as a sister of my brothers. The experience being that the public attitude is really a whole separate suffering these people have to endure. It impacts on the way they see themselves, their self esteem, and the ways in which they exist in the world.

PART 3: Villains and Heroes

What was your relationship with your brother like? 

That's an amazing question because if you had asked me that question every five years in my life, I would have given you a different answer every single time. When I was 20, I absolutely hated my brother. I hated him because I had lived a life of constant fear. 

When I was 20, I was in medical school and sometimes I would show up for an exam having not slept the night before because I had to run off from the house barefoot, because my brother was chasing us with a knife. 

And the fact that I lived fearing for my father's life every single day, I absolutely hated my brother. And I hated him for many, many years. But at the time, I couldn't see my brother's suffering, I could only see my own and my sisters. And I was resentful of my dad for not making things better. But I also was grateful to him, because he was the only one that I thought was capable of putting some boundaries to my brother and somehow trying to protect us that way. I was also resentful of my mother, because my mother always showed unconditional love to my brother, unconditional, to the point that even when my brother was threatening us, my mother was still unconditionally loving her son. I thought she favoured him, my sisters always felt like that, that she always put my brother first, even when our lives were at risk. 

So if you had asked me then, I would have said that I hated him and that I resented my mother and father, too. If you ask me today, when I’m 52, my opinion of this has completely changed. Now I recognize my brother’s suffering. I understand how difficult life has been for him. My brother has not been violent at all for the last 15 years, we’ve had amazing conversations, I've been able to listen to him and to empathize with his position and his suffering. I've had amazing conversations with my mother and I've grown to admire her incredible resilience and infinite faith. She's such a role model. The love she’s offered him, unconditionally, has helped him survive. She is such a strong woman. And also my dad, over the last 10 years I've been able to understand him and I’ve learnt about his life story too. He carried a load on his shoulders, he had his own difficult upbringing. When you put yourself in their shoes, you're able to completely empathize and understand why they were behaving the way they were and any possible judgement vanishes. 

The lesson is to accept each other. Let’s not judge, let's not make assumptions. We don't know anything about anyone else’s experience. We think we do, but we don’t.

My admiration for my brother is incredible as well, despite the fact that he went through so much and he was rejected and judged by so many people, stigmatized by society, and let down by so many professionals. What was crucial in his evolution as a human being was that about 15 years ago he was admitted into a hospital, a long term admission. From that point on, he’s always had the support from the health system. He moved to a few different hospital settings and where he was allowed more independence as he was more and more stable; the last one of those was a residence for people with schizophrenia. That’s where he was for about three or four years. He was having therapeutic interventions on a daily basis, he had a job where he felt useful and valued, he would take part in projects, and we has really respected and accepted for who he was. They truly knew him. That allowed him to develop certain aspects of himself and he was able to flourish. We really saw that resilience and that determination. He never gave up. He never even talked about giving up. This year, he enrolled in some courses, he really wanted to go to university. His goal was to get a degree. 

So, it was crucial that he had that support outside the family, with professionals that really enabled him to flourish as an individual. In that setting, he didn’t have to fight to prove himself anymore. He was doing it naturally.

PART 4: Love and Fear

Most of us live in fear, some do it in more obvious ways, but the only way to eradicate fear is through love. And that is precisely the lesson of this conversation. It was only near the very end of his life that my brother really felt loved and valued and fear became less of an issue for him. During his stay on the medical ward at the end of his life, he was never left on his own, his brother and sisters were there supporting him every single minute of the day. Towards the end he was saying that as long as he had the love of his family, he had nothing to fear. And he said that a few times. It was such a beautiful and emotional statement because if you really feel loved and you feel accepted for who you are, then there's nothing to fear, there's absolutely no room for fear. I just love to think about that as how my brother left.

He was so desperate to be loved and accepted all his life and the more desperate he felt, the more aggressive he was, and the more aggressive he was, the more fearful we were and the more we rejected him. Yet, we all wanted the same: to feel safe and loved.

Do you forgive your brother? 

I’m so incredibly grateful to my brother, talking about forgiving him is so irrelevant now because he's so forgiven! In fact, there's nothing to forgive. There's only gratitude for him. I'm so grateful that he helped me learn such amazing important lessons in life, he helped me evolve. He made me understand and learn lessons that are so important about caring and accepting; accepting is the one word that is so important for me, accepting without judgement. If it hadn't been for him, I wouldn’t have learned those lessons and I would not be able to do what I'm doing. 

In one of the conversations with my brother right before he died, he said “Luisa, I can’t die just yet, I’ve got so much to do still.” And I remember saying to him, “Antonio, you don’t know how much you’ve already achieved. I think you came for a purpose, and you’ve mastered it.” 

He mastered his life purpose but I believe Antonio’s long term mission has only just started. Mind Yr Life is Antonio’s legacy; Antonio, we’ve got a big job to do! 

“We’ve got each other, care for each other and accept each other; we understand our struggles. We’ll never give up on ourselves, we’ll keep going no matter what.”