A Life on Hold: Living with Schizophrenia

By Josie Méndez-Negrete

For more than twenty years Josie Méndez-Negrete has endured the emotional journey of watching her son Tito struggle with schizophrenia. Her powerful account is the first memoir by a Mexican American author to share the devastation and hope a family experiences in dealing with this mental illness. Méndez-Negrete depicts the evolution of the disease from her perspective as a parent and by relating Tito’s own narrative, illuminating the inadequacies of the US mental health system and the added burdens of addiction and blame. Through the author, Tito paints a vivid picture of his lived experiences and everyday traumas to show how his life and the lives of his loved ones have been impacted by mental illness.

• Language: English
• Publisher: University of New Mexico Press
• Release date: Aug 15, 2015
• ISBN: 9780826340573

Josie Méndez-Negrete

Josie Méndez-Negrete is a sociologist who teaches Mexican American studies in the Department of Bicultural-Bilingual Studies at the University of Texas at San Antonio. She is also the author of Las hijas de Juan: Daughters Betrayed.

Book preview

Introduction

Living With and Inside Mental Illness

For the past twenty-four years, my son, Robert López Jr., known as Tito, and our family and those who continue to be in our lives, have endured the emotional and psychological ups and downs of living with someone who has schizophrenia. He was not yet twenty-one years old when he experienced the onset of mental illness. In this book, I write as the mother of a son for whom I had much hope and many expectations. Written in a quilt of narratives, the book weaves in and out of the disease, describing the odyssey of living within the mental health system and inside the ravages of mental illness. While there is ample clinical, medical, and research literature about the disease, a book about the personal experiences of a Mexican American dealing with schizophrenia has yet to be written.

Much research and purging of emotional hurt has gone into writing this book, as society still continues to blame mothers for their loved ones’ conditions, and mothers continue to be perceived as the source of their children’s mental illness (Huey 2007). Bernard Scharts and John V. Flowers (2010) make the case for this trajectory of blame as it categorizes various mental illnesses to a particular type of mother—her characteristics being what shapes the mental disorder. Yet Huey, in his writings about schizophrenia, emphasizes the importance of family support and involvement premised on a vision of hope for recovery. From other scholars, such as Vanessa Taylor (2011), we learn that when the disease appears, it does so as an outward display of negative self-care—lack of sleep and distorted eating patterns included. Ronald Pies (1999) not only documents the financial costs to families and society but also exposes the emotional and psychological costs borne by those who must deal with these types of illnesses. They must avoid trauma and conflict in their lives because of the frailty and vulnerability with which they must contend. As a society, we should create an environment framed inside an understanding of the illness and its effects on those who have been diagnosed, as well as the roles their loved ones take on, while attempting to educate those who detach as potential support so that the few relatives who stay the course may continue to provide a hand.

Tito’s story is not told as a typical linear narrative. Instead, it captures his illness through memories and recollections of the life he had before schizophrenia, which more often than not takes him back to a time when he perceived himself as free of the illness. The stories he retells or recalls allow him to remain inside his humanity. We learn about the onset of his illness and the ways in which he coped, hid, or denied what was happening to him. The multiple flights into health are also evidence in the tragedy that has become his life, and through them, the reader can glean the humor and hope Tito retains.

The epigraphs that begin each of the sections in the narrative are words of wisdom that framed my learning, understanding, and coping. Whatever emerges in Tito’s life, the stories he carries provide me with the means to better understand him. And while this knowledge comforts me, the storytelling, as suggested by Frank (2002), allows me understand Tito’s need to tell me about his life as he has lived it, recalled it, or imagined it, even when I have lived it with him or have been the source of the story. While the voices inside his mind attempt to trap him in the illness, the storytelling provides him an alternative to accepting the limitations of the illness. It is almost as if sharing his recollections of life before the illness frees him from its grasps. Larry Davidson (1993) argues that voices function as regulatory mechanisms, helping those who are mentally ill deal with life events that matter in their fragmented lives, as is often the case with Tito’s need to celebrate his birthday regardless of where I find myself.

The cultural and environmental frame of reference provides a way of dealing with mental illness apart from how it is fragmentarily presented in the literature, and sometimes it is our children who remind us about alternative ways of understanding their issues. Our view of the world, based on our own respective trajectories, gives us the tools needed to deal with institutions of mental health that have forgotten to humanize our loved ones. Medication as social control numbs those who contend with mental illness, largely because of our social preconception that they are prone to violence. But this limits and further depletes the lives of those who are compromised by mental illness (see Roy Porter’s Madness and Peter R. Breggin’s Your Drug May Be Your Problem to explore this issue).

Tenacity, resilience, and creativity allow Tito to cope with his life—a strategy that also has allowed me to reject the blame and shame often associated with those who must care for the mentally ill or those who fail to support loved ones who have been diagnosed with mental illness. Writing these stories, in a way that is accessible to others who may be confronting a similar situation—and not using specialized clinical or research rhetoric—is a way to show that we are not alone, that we are all impacted by mental illness. With this book, I call for alternative, more humane venues in the treatment of the mentally ill. Rather than warehousing them or keeping them in holding tanks, where their only release from their disease is the ever-present smoke from the cigarettes we have accepted as tools to ease their anxiety, it is my hope that new alternatives for their treatment will be implemented.

It’s All Around Us, We Don’t See It

Historically, families of persons who have schizophrenia often were blamed for the development of the condition. . . . These notions, which never had much systematic empiric support, have been abandoned.

—Leighton Y. Huey et al., Families and Schizophrenia

Because my son Tito lives with schizophrenia, we—family, friends, and others invested in him—also live with it. As someone with a social worker background who is now a professor of sociology in Mexican American studies, I’ve learned that mental illness is all around us. It’s among coworkers. It’s hiding in the clear of day under freeways or in homeless shelters. We just don’t allow ourselves to see it. When we suspect it in our midst, we pretend it’s not there. It’s less painful that way, and we can rest assured in the pretense of not seeing, because it hurts too much to witness its real impact. Since we perceive them as abnormal or dysfunctional, we make the mentally ill invisible. Most of the time, we fear them. To ease the guilt and to humanize ourselves, we give them handouts—a few coins, clothing discards, or blankets at wintertime—to make ourselves feel better.

As they try to make themselves visible, we cry for their failed aspirations. We long for what they could have been—writers, lawyers, doctors, poets. The dreams lost inside the illness. Still, they carry their brilliance with them as they walk the streets, making sense only to themselves. With their internal voices sometimes audible to others, they amble in funny gaits, and sometimes, as if dancing or trying to capture something with their flailing hands, shooing away some threat to which only they are aware, they amuse us.

Distracted inside their own world and imagination, we think of them as unfeeling and unloving, as if the illness had stripped them of their ability to emote and care. We fail to hear their prayers for love, their desire to be normal so they can fit in, as they fend off loneliness and isolation and contend with mockery or derision in their lives.

Tito’s voice resides in the everyday of our lives. His illness is our schizophrenia.

Mindful Engagement

Family involvement often is critical to the recovery process and must be engaged actively whenever possible . . . in a redesigned model of care that is explicitly collaborative in its orientation and routinely includes evidence-based treatments that are informed by a vision of recovery.

—Leighton Y. Huey et al., Families and Schizophrenia

Living inside the expectation of what is to come, based on what Tito and I have survived, I make every effort to repair my fragmented self and shore up my social identities in order to carry out my duties as a professor, wife, friend, and relative all the while trying to be a mindful mother. Negotiating the persona that engenders all the aspects of what it means to be my self, I contend with the expectations the illness imposes on me. Like Tito, I sort out my mind to stay connected to the voice that gives me strength to carry on. He contends with eight fictive communities inside his mind, trudging to find his own voice, while I pay attention to keep my own voice, exercising patience and compassion for both of us.

After all these years, it’s clear that schizophrenia destroys families. It kills spirits and decimates minds. Throughout Tito’s journey, his main struggle has been his fear of the impending loss of family support. When loved ones have distanced themselves from him, both of us have refrained from judging their absence. Sharing in his disappointment, I try not to dwell on their abandonment. Only they know why they stay away.

Still, despite all that mental illness encompasses, I have never been more certain that the disease does not deplete our loved ones of their ability to feel and love. As Tito’s mother, the most painful experience is to hear him speak about feeling alone and isolated, left to rot like old discards or as a throwaway, as he often charges when he feels abandoned.

As trite as it may sound, I would gladly take my son’s place, if only to give him the respite he desperately needs. My heart aches as I hear him talk, but all I’m able to do is listen—and not always as patiently as I should. I’m powerless to make others heed his need to make him part of their lives; their presence in it has to take place of their own volition.

Tito still lives inside the illusion that there is a cure. Even in the bleakest moments of his life, when he is thinking about ending it all, Tito longs to live. He wants his own family, although a family comes with responsibilities he is not certain he could carry out.

A Rat and a Motel

Looking for Love

During the last century, quite a few renowned experts concluded that mothers were to blame for a host of childhood emotional disorders: autism was allegedly caused by detached refrigerator mothers, asthma by smothering mothers, and schizophrenia by mothers sending double-bind messages.

—Bernard Scharts and John V. Flowers, How to Fail as a Therapist

As the mother of a son who has lived with schizophrenia for over twenty years, people assume that I have all the answers. This is not the case.

Every time Tito has a break, the disease takes on unpredictable and complex qualities. He has resided in thirty-something institutions; he’s lived in so many places, I’ve lost track. Most recently, with the cutbacks in mental health services, Tito has had to do it on his own, with less support from those who run the board-and-care facility in which he resides. There, they use a tough love approach: the male owner and operator of the facility plays good cop with the residents, who must also contend with a tough female caretaker who is the bad cop and sets limits for them.

Despite their support and willingness to make services available, they are unable to make this process an easy one for Tito. The conservator, the room-and-board operators, and a select group of family members, including me, are working together to guide him, but not without difficulties along the way. For example, in the past two years Tito has had several breaks. The most recent one he called an emotional break; he didn’t see it as a mental break because it was an obsessive infatuation with a forty-one-year-old woman. He fell in love. This time with someone who was only two years older than he was and could still reproduce, rather than with a woman beyond childbearing years, as in the past.

He met her in a nearby open residential facility for women. Christy Heller soon controlled his everyday life. Given his desire for a family, it wasn’t surprising to see him jump into yet another relationship. According to Tito, She would tell me to jump, and I would ask, ‘How high?’ She was supposed to be the one—his future wife, the fiancée he latched on to. She made it possible for Tito to have love.

Heller was a woman on General Assistance who was trying to receive Social Security benefits because of a disability. She had attached herself to Tito as a resource to meet her personal needs: he bought her cigarettes and got her bus passes so she could get herself to doctor’s appointments, and he took her out to dinner as well as arranged weekend getaways for the two of them, if only to spend time in a motel watching television in a private space. It’s not the sex, it’s the company, Tito often said after those weekend getaways.

Certain about her future in his life, Tito introduced Heller to various family members and then to me. She seemed nice enough, but there was something about her. She always wanted something. Whenever I visited Tito, Heller, as his fiancée, became another charge to take along on our outings. A sharp woman, she acted overly nice, gave me cards to let me know she understood my importance in Tito’s life. She often complimented me as she told me about her difficulties with her only son. I didn’t ask her to elaborate or tell me about it, because I didn’t want to know. She was already in my life, and I had no control over it. Tito had chosen her.

A couple of months into their relationship, Tito called to tell me that Heller, whom he previously had described as a player to me, was now pregnant with his child. He was elated. He could not imagine anything better ever happening in his life. At first, I made a strong effort not to point out the negative consequences of a pregnancy and their ability to tend to a child. I thought about it but kept it to myself. Tito emphasized the pregnancy, happy over the possibility of fatherhood. All he could talk about was Heller’s condition.

I was baffled. In prior conversations, Tito had made it clear that he did not intend to bring children into the world because of his illness. Now, he wanted nothing more than to have that child. The way he saw it, he would finally get his own family with Christy Heller, the woman he said he loved most in the entire world. Tito had taken the bait. He had fallen for the trap. When I was around my son and his fiancée, I didn’t see love. From Heller, dependence on and tolerance for Tito was all I witnessed—and this was not love.

Momma, Christy is pregnant with my baby, Tito repeated once again, careful not to give me too much of a pause in which to speak, out of apprehension for my response. Chirping, he queried, Aren’t you happy for me?

Son, I replied, how can I be happy? This is not right. You’re not even well enough to take care of yourself. How can you take care of a child? I didn’t want to put a damper on his happiness, but I couldn’t help but respond. Thinking that I had to be myself—he knows me for my honesty—I uttered how I felt without sugarcoating it.

Horrified by the hardships I imagined for them, I felt devastated, but I didn’t want my son to have children. Almost at the point of suggesting an abortion, I withheld additional comments about Tito’s right to reproduce. Taking time to calm down, I repressed those thoughts and asserted my point, not allowing Tito to interrupt—something he is prone to do when excited. Thus I heard myself explaining what I perceived to be the physical complications associated with her pregnancy.

I’m sad, I said. This is not something to celebrate. Your ‘girl,’ as you call her, has a bad back. She’ll have a hard time carrying the baby to term. I’m concerned about her safety.

Tito didn’t listen to a thing I said. He just went on about his joy. I’m happy. Why can’t you be happy for me? You always spoil things, especially when it’s not your way.

For the next three weeks, Tito called incessantly, and I turned off the ringer on the telephone to give myself some respite. As was the pattern, I soon gave in and called back. He tried to convince me that Heller’s pregnancy was a good thing. We can take care of each other, he said.

Tito spoke as if the impending offspring was the magic pill that would fix all their problems. The telephone calls continued, and every time he called, Tito made the case for his love for children, arguing that he would do right by the child. As if to bolster his argument, he reminded me that Christy, all on her own, raised her twenty-year-old son who now lives in South Carolina. We can do it together. It was not easy to be impressed, given the information Heller had shared with me about her relationship with her son; she had not seen or talked to him for five years.

Suffice it to say, the pregnancy turned out to be false. Heller may not have been expecting or may have experienced a miscarriage; only she knows. The aftermath of the incident brought forth another separation in that rocky relationship, which had already endured six splits. Regardless, the combination of mental illness and children did not make sense to me. Tito had enough difficulties to deal with in his life.

Friends and relatives were concerned about Tito. Some brought up the idea of sterilization. Give him a vasectomy, some argued. Others suggested Heller get a hysterectomy. In either situation, it was not my decision to make. Children are born to mentally ill parents, and we have no control over that, I often retorted.

As for Tito and Christy, they broke up again. The most recent breakup came about during one of their mini-honeymoons, an outing made possible through the appearance of a rat in the bathroom at the board-and-care facility Heller occupied with female roommates. Because of that rat, Tito called every relative and friend who had helped him in the past, pleading with them to put her up for a few days until the facility operator brought it up to code. The responsibility he felt for her care was a burden he did not hesitate to impose on anyone in the family, either by asking to provide her housing or to put them up in a motel for the night.

She’s horrified of rats, he explained. She needs to move. Help me pay for a motel for five days until the place is cleaned up.

No, I will not pay for a motel, Tito. Son, you need to speak to the owner of the facility, so they clean up. Call licensing and report it.

Of course, the rat was just an excuse for another time-out. Without any help from family and friends, I later learned that Heller had pushed Tito to tap the conservator for personal money so they could spend time together, although the request was not made in time for them to spend the weekend. My son, who is extremely creative and knows how to use the system, asked for spending money—eight dollars—to be set aside by the board-and-care operator. He concocted the excuse of a trip to Great America, a theme park in the area, so he and Heller could get away from it all. With money in hand, they rented a motel for a night, resting on the hope that Tito could get someone in the family to pay for the next night.

Giving It All

Still Trying

Before experiencing a psychotic break, schizophrenic patients often experience a prodromal phase during which they have less severe symptoms of psychosis. These may include anxiety, restlessness, hallucinations, delusions, and a gradual loss of reality.

—Vanessa Taylor, Schizophrenic Break

It was a summer day—the third weekend of July 2009—and as had been the case with most of Tito’s breaks, I was out of town at a professional conference, tending to multiple responsibilities when his request for another night at the motel came. He was desperate. He had tried to figure out a way to pay for the night so he and Heller could continue their weekend together, but no one had come through.

My husband, Jorge, because he understood Tito’s needs to have physical, sexual, and intimate contact with his girlfriend, relented and paid for another night at the motel, even though he usually leaves such things to me. Jorge made a credit card transaction for one more night. The only condition was that Tito refrain from asking again—as if this were possible.

When early Monday morning came, we learned that Tito had returned to the room-and-board facility to get his medication. After that, he went to see Bob Miller to ask for more money, which Miller was unable to provide. What I later learned was that Heller had also gone with Tito, ready to make an inquest about what Miller had done with Tito’s fund allocations, while also making a case for having the capacity to take care of Tito and his money. Miller did not fall for the scam. Instead, he asked Heller to leave the meeting, telling her this was a private matter between Tito and him.

Tito had no choice but to return to the board-and-care facility. This move resulted in the final breakup. It was then he told me about Heller’s designs: She was pissed, Momma. She left without even looking back and we haven’t talked since—five days ago. We broke up. This is for good. I mean it. She was just using me. Dave [the program operator of the facility that housed Tito] made me see it.

Life is not easy for Tito. He is alone again and about to come undone. As he tries to gain his independence, with the help of Dave, the board-and-care operator, and Miller, the conservator who cares, my family and friends support him, helping him to learn to rely on himself as he abstains from enacting his boy-who-cried-wolf screams for help every time he confuses a want with a need. For Tito, all his wants are needs. He’s yet to learn the difference.

I talked to Tito the other day. He sounded good. More to himself that to me, he said, I don’t need a woman to make me happy. I only need myself. That’s what I’m gonna work on, Momma. I’ll make you proud. I can’t imagine things changing, only getting worse.

Most recently, Tito has been worried about budget cuts and the effect these will have on him and those who reside at his board-and-care facility. As conditions in the mental health system worsen, instead of a social worker, Tito will have to make do with social support groups. He just needs a place to find his own voice to talk about what consumes him when delusions, hallucinations, paranoia, and depression take control of his life.

As for me, I have resolved to remain healthy and to tend to myself so that I can be there for Tito when he calls, so that I am clearheaded enough to listen with an open heart and to help him when he needs it. With the recognition that the disease he deals with is slippery and complex, my aim is to act confidently and respond firmly to each request Tito makes. It’s not always easy; I give in more than I refuse. For now, with the beginning of every new day, I rest assured in the confidence that Tito has a conscience and the commitment to not hurt himself or others. Praying that he does not come to harm, I keep him in my thoughts every minute of my life.

Tito’s journey is never ending. When the medicine no longer works, he has setbacks that invariably involve readmission to a hospital. There, in addition to examining his physical condition, psychiatrists and mental health professionals go about adjusting the medication. Their aim is to make possible Tito’s return to the community and his one-day-at-a-time life. For the rest of his life, they will continue to dispense thirty or more pills a day to treat his psychosis and the medical side effects.

Pills are not the magic solution. They do not always abate the effects of mental illness. Recently, Tito described the physical side effects of his medication as a burning or stabbing sensation, as though fire ants had taken up residency in his body and were crawling inside him, making it difficult for him to walk and freezing his muscles. He is tired most of the time and often tells me that he is not going to live beyond forty. Other times, he threatens that if he does not die from the physical turmoil of the disease, he will end it all. Those are the times when an I can’t take it anymore slips out of his lips, even as he continues to talk about his hopes for a future.

Voices and Lessons

Schizophrenia Shows Up Unexpectedly

Schizophrenia is a mental disorder characterized by gross distortion of reality, language disturbances, fragmentation of thought and other troubling symptoms. The cost of caring for schizophrenic patients comes to more than $17 billion per year in this country—but this figure can never capture the emotional cost borne by patients and their families.

—Ronald Pies, How Families Can Cope with Schizophrenia

As a social worker, I never had to deal with a schizophrenic person who was depressed. The most troubled patient I saw in my practice was an adolescent girl experiencing a brief psychotic episode due to the conflicts she confronted in school and her demanding parents. This experience did not even prepare me to imagine how to deal with the illness that would overcome Tito.

Despite professional knowledge, when it came to Tito I found myself relying on the wisdom and advice I received from a mental health professor. It was easy to help others based on the book knowledge I had amassed, along with the intuitive tools I picked up as a survivor of abuse. The problems we dealt with in that context, because they were not mine, appeared to be so simple.

Start where they’re at, the professor told me. Let them tell you their story. No one listens to them anyway; be the first one who does. These were easy words to go by when dealing with problems confronted by other parents and their families. Her words also reassured me that Tito, a short young man who has been known to say that he is almost five feet and five inches tall when asked about his height, would not be scary or dangerous. Some have described Tito as cute, like a furry teddy bear with a full beard that covers the face he wants to hide from the world. The professor’s words gave comfort, and I rested on my knowledge of the person Tito was before the illness to feel safe when he was not well.

With only academic knowledge to guide me, I learned to rely on a self-help philosophy that I’ve used with addicts—one day at a time—to help Tito through the day. Given that I expect him to be anxious and unable to concentrate, attributes assigned to individuals with schizophrenia, I tried to keep from focusing on his behavior and the consequences of it. Instead, I focused on one issue or problem at a time, with the expectation that that approach would work. According to one of my professors, It’s best to let the person drive the interactions.

When Tito visited my commuter home near downtown San José, I could tell he felt uncomfortable outside his environment. He paced, approached me, and let out a gargantuan sigh. Then he greeted me, almost as if I were not his mother, telling me he was glad to be around me.

Despite his wrinkled clothes and gangster appearance—dressed in black and red, with baggy pants that hang to the middle of his backside, exposing a bit of his boxer shorts, and a long-sleeved shirt buttoned up to the top—Tito is more than cute; I would call him handsome. Yes, he is short of stature, but he is very well proportioned—broad shoulders and strong features—with an American Indian nose I connect to his Apache ancestry. His eyes are large, with long eyelashes, and he sports a short military-style haircut.

Buenos días, m’ijo, I said, silently committing myself to make every effort to understand him. Then we tried to engage in conversation. But he was not ready