Remnants of a Life on Paper: A Mother and Daughter’s Struggle with Borderline Personality Disorder

Remnants of a Life on Paper is the account of a young woman suffering from borderline personality disorder, told from the point of view of both the patient and her family. After her daughter Pamela’s death from a monoamine oxidase inhibitor interaction, Bea Tusiani, a writer herself, discovered the diaries Pamela had kept throughout her years of illness. Assisted by her daughter Paula, she supplemented Pamela’s account of her struggle with a concurrent description of the family’s experience as Pamela’s condition intensified and evolved.

This double perspective on borderline personality disorder can help clinicians, and also patients and families, achieve a better understanding of this complex and often confusing illness. Specialists continue to debate its central feature: emotional dysregulation (1), interpersonal sensitivity (2), a deficit in the capacity to mentalize (3), and the lack of a coherent identity (4) are all proposed as the core problem. Whatever the understanding, borderline personality disorder is a public health crisis affecting 1.8%–6% of the population (5–7).

Among the messages in this book, the most important is that problems in understanding this disorder constitute one of the main obstacles in addressing it and augment the suffering that comes with it. The book provides a compelling argument for the need to better educate both the public and providers about this condition.

As is the case for many patients with borderline personality disorder, Pamela was initially treated for major depressive disorder, including with ECT. Her early inpatient experiences reflect a combination of inaccurate diagnosis and treatments that address the symptoms without addressing borderline personality disorder in its entirety. It was only her third outpatient therapist who made the correct diagnosis, and, while that therapist could make the diagnosis, she was not trained in any of the specialized treatments for borderline personality disorder. Failure to accurately diagnose borderline personality disorder is a common problem. One study (8) found a 10-year lag between patients’ presenting for treatment and their receiving the correct diagnosis. Crucial time can be lost; suffering is immeasurable. The difficulty with accurate diagnosis stems from a combination of factors, including the unfortunate stigma still associated with the diagnosis, clinicians’ tendency to preferentially diagnose conditions that fit into pharmacological algorithms of treatment, and, sometimes, lack of insurance coverage for personality disorders. The evidence-based treatments for borderline personality disorder seem complex and require special training. However, they are highly cost-effective when patients are helped to move from the status of a chronic patient to living a functioning life. The alternative is often an unending series of nonspecific acute treatments that help a patient survive from crisis to crisis.

Unfortunately for Pamela and her family, even after the correct diagnosis was made, she was not referred to an evidence-based therapy for the disorder.

The need for more awareness within the clinical community is paralleled by the need for better education among families. The Tusianis describe painful confusion about how to understand what their daughter and they were living through. Of the many characteristics of borderline personality disorder, those that are especially poignantly described by Pamela are the terrible sense of emptiness and the impact of splitting. It is difficult for a person without borderline personality disorder to imagine the horror of not having a clear and consistent sense of self. It often leads to forms of acting out, such as drugs, promiscuity, and cutting that, on one level, attempt to fill the void. Pamela’s poems and paintings communicate both her inner confusion and despair and, over time, a feel for the progress she had made in understanding her emotions before her tragic death. Pamela’s diary entries vividly communicate the confusion around splitting. Polarized thinking about people is difficult for the patient, and others, to understand. Pamela’s “black and white” internal world influenced her perception of her family and contributed to their confusion in being treated serially as beloved supporters and then as mistrusted enemies. These shifting lenses leave those in the patient’s life as confused as the patient if no education has been provided to help. A pleasant shopping trip with her mother ends with Pamela cutting herself after they arrived home. Her mother is left bewildered. Perceptions of the same events can be so different that the parties involved are sometimes left wondering if they share the same reality. The patient’s distortions of reality can lead a family member, or even therapist, to question his or her own version of reality.

Pamela’s words express the broad and often disconnected variety of emotional states associated with borderline personality disorder. The most poignant entries in her diary describe her confusion: “There I stood, in a hole, deep in the ground. Did I dig it or just get in? Did I fall into it? Did someone else dig it and throw me in?”(p. 7); “I hate to be awake, sleep, dream, think, look at myself in the mirror, go outside—God, help me love these things again!”(p. 40); “I’m such an idiot! God, why did You put me on this earth? How can I change?”(p. 80).

Some of Bea Tusiani’s most intense comments have to do with her frustration with aspects of her daughter’s care, especially in relation to clinicians who told the family to be less involved or, worse, implied that they were responsible for their daughter’s condition: “These family meetings are supposed to encourage open communication among us and support Pamela in her recovery. In reality, they’re like boxing matches, with the therapists waiting to pounce on the first person who opens his mouth. Mike and I have become the easiest targets. Like punching bags, we’re accused of being too controlling, projecting our feelings onto Pamela and victimizing her with our expectations. We’re not numb to these punches—every jab hurts” (p. 81). What resolution Ms. Tusiani has found has been in her efforts to inform herself and others about borderline personality disorder and its impact. The family’s reaction to the tragedy they went through led to both this book and a website that provides education on the disorder (www.bpdresourcecenter.org). Both are valuable resources to the public and to professionals. Remnants of a Life on Paper will be of particular interest to clinicians who do not specialize in treating borderline personality disorder but who inevitably encounter it in their practice.