Sunday, September 13, 2015

Living in a Fourth Dimension: A Literary Experience Guiding Readers to an Understanding of Schizophrenia

Cover design and all paintings, drawings, and caption descriptions below are by Dr. Josie Méndez-Negrete
La Bloga is so fortunate to have with us Dr. JosieMéndez-Negrete today.  Her recently published book, A Life on Hold:  Living with Schizophrenia takes us on a journey that is not talked about in our Chicana/Chicano and Latina/Latino communities. Méndez-Negrete’s book is groundbreaking in guiding us through what she’s experienced: raising a child with schizophrenia.  Included in this interview are paintings and drawings that appear in the book, all created/painted by Méndez-Negrete. Thank you for being with us, Dr.Méndez-Negrete. 

Title: "Infant." My son at two and a half months.  He is in front of the Mexican flag
and leaning on an Apache blanket to symbolize his ethnic pride.
Montes:  Primero, tell us about your process.  Did you begin by writing short pieces that grew into this book? 

Méndez-Negrete:  Initially, I conceived this book as part of a trilogy of survival, of which Las Hijas de Juan was the first.  The stories are reflections, recollections, and memories shared with Tito.  The first story that I wrote, as a way of coping with all the demands in my daily life, including working on my PhD, was written before the onset.  Others I wrote to document the ways in which Tito coped with the illness and the multiplicity of breaks he experienced throughout its course.  Some portions of the stories were written in his eligibility appeal for Social Security Disability, when he was denied as ineligible because he lacked two psychiatric hospitalizations.  Others were written in journal or note forms to document the ways in which we coped with the illness. 

Montes:  Tell us how you collaborated with your son on this book. 

Méndez-Negrete:  Directly, Tito’s collaboration is the poem he wrote that precedes the introduction of the book.  He asked me to add it to the manuscript.  Tito is brilliant, which is both a blessing and a curse.  He knows the disease inside out, and often finds himself explaining it to others, including family, friends, and anyone who is willing to listen.  He is an expert at informing others what the illness does to him and those around him who are mentally ill.  He didn’t tell me how to write the book or how to organize it because he thought it was my project.  Tito did not see himself writing a book about his circumstances but felt that if anyone could bring his story to life, it would be me.  Throughout the process, he asked questions, supported me, and encouraged me to tell our story for others to learn about mental illness and how it affects us.  Sometimes he told me a story or other times he told me something I might consider adding.

"Talking to Birds" when Tito began experiencing auditory hallucinations (before age 16)
Montes:  The book is so well designed using both memoir and scholarship.  Case in point: Each chapter opens with a brief medical/clinical research quotation so that by the end, the reader has access to various texts on schizophrenia as well as quotes Tito said.  Tell us how you came to include these.

Méndez-Negrete:  This is such a complex and misunderstood disease that I wanted to ground my work on both the clinical and basic research available to us, without producing a detached and distant narrative that attempts to render an objective presentation of a reality, which is difficult to understand for those of us who do not contend with it.  As a Chicana feminist, I see the book as a way of creating social change by humanizing, narrating, and bringing to voice the experiences of our loved ones who more often than not are decimated by the stigma and demonization of the illness. 

Montes:  What does Tito think of the final product of the book?

Méndez-Negrete:  He likes the cover and the art that is included.  For the reading I will be doing at the Esperanza Peace and Justice Center in San Antonio, he has asked me to read a particular story, because he finds humor in it.  However, he has yet to read the entire book.  As I mentioned, I’ve read him some of the text because he does not have the concentration or attention span to engage it.  On the one hand, he has shared this:  “I fear what I will see or find,” when I posted this question to him.  On the other hand, he has become a promoter of the book, telling those around him about it and inviting them to purchase it.  This morning, before he left to a day treatment center, in San Antonio,  that he joyously and consistently attends, he added:  “Those who have read it at The Clubhouse think of it as a mother/son’s love story.” 

Montes:  As I read the book, it seems to me that to enter Tito’s world, one must suspend one’s understanding of how to interpret the world around us.  We are encouraged to see the world through his eyes. 

Méndez-Negrete:  I think that Tito provides us an alternative understanding for thinking about the ways in which we are wired.  The connections in our brain and the ways it works because of the illness, opens up realities that most of us are not even able to consider.  For example, Tito often speaks about living in a fourth dimension where he is able to understand contemporary times through the past lives he has had.  Most of us would immediately call him “crazy” or label him a “loony” without recognizing that this alternative reality is a metaphor for not residing inside and within the normative expectations we have about our interactions and relationships in the sociocultural world in which we must interact as social products.  Whether it is the misfiring of his brain or the way his mind works, in addition to dealing with these expectations, Tito has to contend with the fictive communities that reside in his mind, which most often than not deride him and ridicule him as a valueless human being.  To walk this world listening to the voices he must contend with, and to still be able to interact in a compassionate, loving, caring, and humanist way, is the gift that my son, Tito, gives me:  to place one foot after the other as I carry on with the responsibilities of life.  He is truly my gift!  Because of his presence in my life, I am a better person.

"Voices" attempts to capture the noise in Tito's mind as he makes sense of himself,
his environment, and the things he hears that pierce his heart
Montes:  The stages of this book can be compared to Gloria Anzaldúa’s theory of “La Conciencia de la Mestiza.”  The beginning of the book focuses on coming to terms with schizophrenia, letting go of historical ideas about illness being someone’s (or a community’s) fault, and then moving to a new consciousness and understanding of love.  In the introduction, you mention that it is not linear (as Anzaldúa’s Borderlands is not linear).  Do you feel there are connections to her book? 

Méndez-Negrete:  A Life on Hold has given me the venue to continue coming to conocimiento with those I love, with myself, as well as with those whom I interact.  Because he is in my life, I can continue to improve the “me” expected by those who know me and love me.  My aim has always been to honor Tito’s life, to document his experiences, and to share with others the amazing resilience he possesses.  It is my hope and my vision to create an opening of acceptance and humanization of those most stigmatized in our society:  the mentally ill who barely survive in the margins of society.  I believe we would become a more compassionate society if we just allow ourselves to understand that those who stand outside the norm have their gifts and contributions to make. 

"Boycotter"-- Tito as my supporter when we participated in the
secondary boycott for farm worker's rights.  He was passionate to be part of it.  
Montes:  What would you like readers to understand most about this book? 

Méndez-Negrete:  To touch, feel, and think about the hardships confronted by those who live with schizophrenia, and, at minimum, to humanize them.  At an optimum:  to see them and attempt to understand them rather than ignore or make them invisible. 

Montes:  What do you hope this book will do for readers, specifically the Chicana and Chicano communities? 

Méndez-Negrete:  As with my prior book, it was my objective to make visible the things we deny, sublimate, or ignore in our midst.  As a person who through life’s circumstances has had to learn deeply and broadly to read her environment so as to deal with the travesty and triumphs of life, I believe we read each other and often intuit what we contend with, when connected to our common humanity.  As was the case with incest, in the process of writing A Life on Hold and into the final stages, it did not surprise me to find out that among those I interact with in my daily life—current and long-time friends, colleagues, and students—many carry hidden stories of mental illness, including schizophrenia that had never been shared or made visible.  Among them were women friends who had mentally ill sons that I did not know about, or parents who were mentally ill. Recently, in my graduate class, one of my students came in with my book, asking for an autograph.  I learned that the student had read it over the weekend and wanted me to know that, “I now more clearly understand my mother and my brother.” 

"I May Be Crazy, But the Trees Are Still Green" is the first of three
paintings I completed in the midst of the onset and his response
to my attempt at gauging his cognitive and emotive connections inside the illness.
Montes:  How has the publication of this book affected Tito and your family?

Méndez-Negrete:  Even though it took ten long years to complete, from the first story to publication, I am still in disbelief.  I am thankful that the Editorial Board of New Mexico University Press, with the support of ClarkWhitehorn, brought this book to publication.  The staff at the press has been an amazing and supportive group.  Tito is interested in how the book is doing but has yet to read it, except for those brief chapters I have read to him.  My family supports me in all I do, believing that it is the greater good and my way of creating change that motivates me to write.  The only one I know who is reading it now is my sister, Felisa, who is my strongest ally and supporter.  As an ally qua surrogate mother to Tito, in a couple of comments she has made, Felisa has told me she had no idea how it was for Tito.

Montes:  Is there anything else you would like to tell our La Bloga readers?

Méndez-Negrete:  First of all, Dr. Montes, thank you for creating spaces for new knowledge with your viritual work.  To the reader:  If you have any comments or questions, please reach me at When you e-mail me, I will make my best effort to respond to your questions or comments. 

Montes:  If you are in San Antonio on Saturday, September 26th, don't miss going to the Esperanza Peace and Justice Center to hear Dr. Josie Méndez-Negrete read from Living a Life on Hold:  Living with Schizophrenia.  Thank you so much, Dr. Méndez-Negrete.  


Unknown said...

I can't wait to read this! Congratulations again, querida Josie! Your work continues to inspire our gente. And gracias, Amelia, for all you do.

---Cristina Herrera,
Fresno, CA

Unknown said...

Schizophrenia has had a huge impact on my family. I would love to read your book and hopefully come away with a clearer understanding of the disease and what it is like to have it. Many thanks to both of you!

Unknown said...

Schizophrenia has had a huge impact on my family. I would love to read your book and hopefully come away with a clearer understanding of the disease and what it is like to have it. Many thanks to both of you!

Anonymous said...

Wonderful to see your book come to light. Congratulations!