Our Voices: First-Person Accounts of Schizophrenia

Our Voices: First-Person Accounts of Schizophrenia is the first book of its type. There are similar books on schizophrenia, one where patient-authors ask the questions and share their first episodes. Our book is different in that it was designed to emphasize that schizophrenia is a lifelong illness with long-term and daily challenges, not isolating the focus on initial episodes. The market also has books with a similar format to ours: some interview and ask questions to experts, and some attempt to record or analyze answers from the popular mainstream. It should be pointed out that the subject matter of the interviews in these books varies greatly from ours. The commitment and long process of writing and editing our own book became a reality when Jenny Edwards, one of the social workers from the UNC STEP Clinic (the University of North Carolina Schizophrenia Treatment and Evaluation Program) recognized the potential of one of many ideas that were proposed to her. It is so incredible that she would choose an idea, and have the vision, faith and confidence in us that we would make it happen! Her colleague Bebe Smith, Director of Outpatient Services at the STEP Clinic (who has worked in publishing), put the process in motion. Technically, Bebe and Jenny were just advisors for our book project, but we relied greatly on them, much more than they would have liked. Our team of author-editors consisted of five individuals, each with some form of schizophrenia, who have weathered the worst part of their illness, have put their lives back together, and have really started to succeed in life again. Our author-editing team consists of talented writers, some accomplished, some truly solid. Because of all the unique battles we have triumphed over, we started this book project to share our personal perspectives with the world. Our goal is to develop understanding in our readers that schizophrenia is a life-long illness, as well as an understanding of shared perceptions, experiences, and challenges people with schizophrenia face in daily living and throughout the course of their illness. After assembling the team, right away we started compiling questions for the pilot questionnaire. Each team member submitted a minimum of 10 questions. We even had a “question hog” who submitted over ninety, further complicating the process. We were seeking appropriate questions on a balance of issues pertaining to all areas relevant to the illness and lifestyle choices. Together we rewrote, rephrased, eliminated, and selected questions to evoke significant short answers. After the answers to 10 pilot questionnaires, including our own, were recorded and analyzed, we went through the process again. The final questionnaire was in two parts, and at the end of each part, we gave the patient-authors an opportunity to write more free-form comments, which we later dubbed “elaborations.” Not every question applied to every patient-author. We also explained to them that they didn’t have to answer every question to participate. To obtain honest and open answers, we chose to identify each answer from the patient-authors by a fake first name, followed by their real age. The patient-authors had a lot of fun choosing their own fake first names. The vast majority reported they had schizoaffective disorder, some were unaware of their clinical disorder, and some declined to say. Being patients ourselves, we had no way of verifying the professional diagnosis of these patient-authors. Our final sample actually turned out to be very diverse, even though it probably didn’t mirror an exact statistical model of the community. The average age was 42. We selected a final total of 20 answers – from 10 women and 10 men – to the questionnaires. We recruited patient-authors from our friends, patients of our social work advisors, the hospital waiting room, two different clubhouses, the STEP art gallery reception, and organizations including NAMI and Schizophrenics Anonymous. Our “book committee” officially met about once a month at the hospital to report on our progress and make pertinent decisions. We had many heated discussions, one of which resolved not to use the term “consumer,” unless the patient-author made reference to it. Our discussions were so thorough that we usually came to agreements without voting. To delve deeper into the motivation and individual psyches of people with mental illness, we included a poem in each chapter. We had enormous interest from people wanting their poetry to be published. The criteria for the poetry submitted were different than for the questionnaire. The poets were only required to have some form of mental illness. We concluded that most people with schizophrenia could compare and other readers relate to poetry about all types of mental illness, whether the poems were about depression, medication, mood disorders, or other aspects of mental illness. Our author-editor team decided against preparing scientific chapters usually contained in books similar to ours. We decided it would be doing a disservice to the reader to oversimplify or summarize scientific explanations and findings of brain chemistry or give a condensed primer of medications and therapies. We recommend that the reader consult a number of good, updated and specialized books currently available on the market. In most chapters we have, however, provided some facts relevant to the subject of that chapter in an effort to give some background necessary to understand the questions and answers. The sources are documented in the back of the book. If you are interested in good informational websites and books, please consult the bibliography, but also keep in mind that many more excellent resources are out there. This is a serious subject with intensely probing questions. After we studied the answers, we realized that there was not only levity in the answers but some were downright humorous. After reading this book, no one can say that people with schizophrenia don’t have a sense of humor. To read this book, you not only need to employ a similar sense of humor but an open mind. Basically, this is a book of opinions and perspectives. It entails varied perceptions and personal solutions to the challenges we face. To attempt to understand the answers at all, you need to attempt not to judge or discern. The opinions expressed in this book are extremely varied and personal. Some are consenting, some dissenting, some rational, and some irrational. (Of course, some irrationality can be expected when dealing with people with schizophrenia.) We are not issuing the standard disclaimer about not being responsible for the opinions of others. Neither are we going to apologize for the opinions of others. We have assembled these questions and are printing them exactly as the patient-authors wrote and expressed them. Even our team members do not always agree with each other’s opinions. This book doesn’t need to be read in one sitting. It does not need to be read in sequence. You may pick it up and choose any chapter. You may even single out and follow the answers of one or two people throughout the book. To digest the full meaning of the poems, you can easily read them by themselves. The elaborations, however, become more meaningful if you are acquainted with some of the answers concerning the background of the patient-author who is writing them. The facts interspersed in the chapters are popular knowledge you may already be acquainted with. Then again, you may be surprised by them. We took the opportunity at the end of the process for each of us on the committee to have our individual voices heard. We each expressed our hopes for a brighter future for people with mental illness. For individuals with schizophrenia—here’s your chance to compare! For mental health care professionals, not only can you attempt to relate to us better—you may read what the patient-authors really think about you. (Yes, we