NAMI Bookshelf November 2011
Prometheus Books (2012), $19
By Doug Bradley, NAMI Information and Referral Associate
A Lethal Inheritance has three focal points that complement and illuminate each other. The first is the story of the author’s son who was diagnosed with schizophrenia in his teens. The second is the mother’s search of her family tree for clues as to where the illness came from, how mental illness may have affected her ancestors, and ultimately, how it affects her present family. Lastly, the author discusses past, present, and possible future descriptions of the course and treatment of this disorder.
Although schizophrenia is often described in scientific, medical and psychological terms, it is, like all illnesses, an intensely personal experience. While people living with schizophrenia share some characteristics, the details of what they and their families go through are varied. While "Alex," Victoria Costello’s older son, develops overt signs of schizophrenia while in high school, he benefited from intense early intervention with both psychotherapy and medicine. As an adult, Alex has decided not to continue taking medication, much to his mother’s initial concern, and has thrived as an artist. The author does not claim that this route is realistic for everyone, but it shows the possible benefits of early treatment and that the illness can have different long-term outcomes in different people.
The second narrative describes Costello’s search into her ancestry to find possible signs of mental illness, and possibly suicide, to help explain Alex’s illness. Going through family documents, official vital records and even visiting the Irish county where her father’s family came from, she discovers a possible “loaded pedigree” of mental illness. She is careful to state that none of this is definitive as modern diagnostic criteria were not used in the past. However, by using records of hospitalizations and alcoholism (both considered by many researchers to be suggestive of mental illness when an exact diagnosis is not available), she makes a convincing case that her son’s illness appeared in earlier generations.
In finding help for Alex and in researching her family, the author also recognizes her own depression and the anxiety in her younger son. These diagnoses, however, are made by doctors only after she and her younger son have significant life impairments—they are not "bandwagon" labels by which the author claims to cure her family.
Finally, Costello examines the current genetic and environmental research in schizophrenia. Her account is an excellent caution that progress is often slow. Results from studies seem to contradict each other and, from reading popular media, one may feel that the “truth” changes from year to year. Costello shows how many of these studies are not adequately explained in newspapers and magazines, and how the authors of these articles—along with the researchers themselves- sometimes spin the data to reflect their own bias. She also acknowledges that well-designed studies sometimes do contradict each other and that the finding out of what’s true (i.e. science) is a long, hard, complicated process.
In short, A Lethal Inheritance tells how far we have come in understanding schizophrenia and yet how far away we are from fully comprehending and effectively treating it. By focusing on individuals with mental illness, their families, and large populations, Costello gives a good overview of where we are now in the journey to uncover the causes and treatments for mental illness.
Grand Central Publishing (2011), $13.99
By Doug Bradley, NAMI HelpLine Information and Referral Associate
Writer’s Note: I volunteered as a mental health aide intern on Lori Schiller’s unit at New York Hospital-Cornell Medical Center, Westchester Division during the summer of 1989. During that time I observed some of what is described in The Quiet Room, though not, of course, the therapy sessions.
Lori Schiller developed, although was not immediately diagnosed, schizophrenia as a young adult. When she was working as a camp counselor at age seventeen she first experienced the “Voices,” which constantly belittled and insulted her. Forced to leave camp early that year, she began a long journey to understand what was happening to her.
For many years she did not believe she was sick. She coped by rationalizing her illness and by using street drugs such as cocaine, which briefly made her feel better but ultimately made the Voices and paranoia worse.
After college, Lori had several hospitalizations during which she still maintained she was not ill. Individuals with mental illness, family members and friends will find this section sadly familiar; she was prescribed many different medications, all of which had little success and many side effects. Substance abuse also impeded her recovery, as did her inability to see her illness.
While most of the book is told from Lori’s point of view, there are chapters written by others in her life. These chapters show how many people were touched by her schizophrenia and, more importantly, by Lori herself. Anyone who has seen a friend or family member develop a psychiatric illness will relate to these tales of confusion and concern about Lori’s increasingly erratic behavior. Her roommate tells how Lori graduated from college in spite of her as-yet undiagnosed illness and the strain it put on their relationship.
Lori’s family members also contribute their perspectives to the story. Her father and mother describe the heartache of not knowing what is happening to their daughter as well as the difficulties, long before parity, in getting insurance to pay for her treatment. Her two brothers also relate how hard it was to understand their sister’s behavior and the impact it had on their dating, scholastic, and personal lives.
Dr. Jane Doller, Lori’s tireless and incredibly empathetic psychiatrist and one of her therapists, writes about the difficulties of finding the right medication. Eventually, clozapine was prescribed and, despite the side effects, the Voices began to recede. For the first time in years Lori felt that she “wanted to live.” Just as importantly, Dr. Doller and other therapists helped Lori understand her emotions before and during her recovery. As any individual with mental illness knows, “normal” feelings can be frightening when one is used to experiencing only anxiety, depression and psychosis.
This book was originally released in 1994 and the author received many inquiries as to how she is currently. The new 2011 version of The Quiet Room contains an afterword in which she describes her life now. She is honest about having been a speaker for Sandoz (now Novartis), the maker of Clozaril, for which she credits for much of her recovery. Despite occasional setbacks, she has married, moved to Florida, found a psychiatrist and therapist she likes, and volunteers with several local mental health groups, including NAMI. While she is still visited sometimes by the Voices and her medicine has side effects, her life is “unremarkable and utterly remarkable; normal, yet a miracle, too.” This outcome is something many individuals living with mental illness strive for.
Recalling Dr. Doller’s lines in the foreword, this book is a great reminder that it is the individual, not merely a diagnosis or set of symptoms, that mental health professionals should be trying to help.