From Grief to Advocacy:
A Mother's Odyssey
by Valerie Porr, M.A.
What do you do when the person you love the most on this earth is stricken with an illness that so completely changes her behavior it seems as though she has disappeared, leaving behind only a hollow shell; an illness that you know nothing about; that your friends don't believe exists; that professionals don't talk about; for which there is little or no explanatory literature; an illness which even Oprah doesn't discuss? Borderline Personality Disorder (BPD) is such an illness and is the diagnosis given to my only child.
At seventeen, my daughter ran away from home for the first time, revealing an intense hatred for me that she said she had nurtured for years. She accused me of child abuse. She was aided and abetted in this venture by a wealthy family who took her in, hired a lawyer for her and took me to court for control of her trust fund and her child support checks, all the while reciting a litany that she is still repeating. The court papers implied that I was the sick one and she was the victim who needed rescuing from me. I, on the other hand, had eight diagnoses from the various "reputable" therapists who had seen my daughter over the course of her adolescence. As it turned out, the previous professional observations were all stepping stones leading to a diagnosis of borderline personality disorder. Sadly, this label explained both her history of impulsive behavior and her letters and diary entries I later found, wherein acts and feelings were revealed of which I was completely unaware.
Empowered by the court and further enabled by her hippie godfather, my beloved daughter walked out of my life. I have not seen her for over five years. She is now twenty three.
Grief has become a permanent part of my daily existence. Unfortunately, for those of us whose children are thus afflicted, we are denied the solace of the ordinary rituals and rites of mourning. We must learn to live with our loss and disappointment as others live with physical disabilities.
This edition of The Journal in some ways represents my personal odyssey over the past five and one half years in search of information, expertise and an effective form of therapy that will help to restore some semblance of the child I've lost-that can lift the gloom that pervades my life. On the pages that follow you will be introduced to people I have met, lessons I have learned, and circumstances that account for my evolution as a determined advocate for persons with borderline personality disorder and for their families.
Bewildered and deeply saddened when my child left, I read every available book about BPD trying to understand and although I found the descriptions of the illness to be accurate, the explanations given did not coincide with my experiences with my daughter. Confused, feeling completely alone and hopeless, I started a support group for family members of people with borderline personality disorder. As family after family joined our group and shared their histories, I found echoes of my own pain. It seemed we had all been accused of some sort of child abuse. That was the common denominator of most of our experiences. All of us had a child who either loved us or hated us, who had rage attacks and bouts of depression, who harmed themselves in myriad ways from self mutilation to attempted suicide to gambling to sexual addiction to eating disorders; who were impulsive, lacked emotional control or were substance abusers. In addition, these children of ours rarely perceived themselves as having a problem. To hear them tell it they were merely the victims of the behavior of others. The pain of seeing our children in this condition was magnified by the professionals who didn't or couldn't help them yet never hesitated to blame us for the problem. We, the parents, were made to feel like destroyers of those we had brought into the world, loved and nurtured.
At this point, through the efforts of a dedicated fellow advocate, John Grelek, I had the good fortune to learn about the work of Dr. Marsha Linehan of the University of Washington in Seattle. She had developed something called Dialectical Behavioral Therapy (DBT) - a system of cognitive behavioral therapy for the treatment of borderline personality disorder with outcome studies showing its efficacy. Suddenly, in her work, I found some answers to my questions and, for the first time, I felt there was hope for my child and for others. It became my "mission" to bring Dr. Linehan's work into the New York City Mental Health System.
With the help of key people in the city and state mental health systems, and my loyal ally and mentor, Dr. Robert Trestman, in record time we applied for and got funds to bring Dr. Linehan to NYC for a two day training conference that was attended by 350 professionals. It was an extraordinary event, and one that Dr. Trestman and I agreed would require appropriate follow up to insure any real progress. With that in mind, we created an entity called TARA-APD-an acronym for Treatment and Research Advancement Association for Personality Disorder. As a non-profit organization it would be the voice that was needed for the support of those suffering borderline personality disorder and contending with the conflicts in today's changing world of research and health delivery systems. We would no longer tolerate the indignities that people with borderline personality disorder and their families had historically been subjected to by governmental and medical authorities who should know better.
As a child I had seen a film called "Gaslight" in which Ingrid Bergman, an heiress who is newly married, remarks to Charles Boyer, her ne'er-do-well husband, that the gaslights in their home seem to be dimming. "No, they aren't darling," says Boyer, as he fawns over her, "You are imagining things." Ingrid soon feels that she is going mad when, over time, what she perceives as reality is not being validated by her doting husband. The dimming gaslight is the perfect metaphor for the experience of living with someone with borderline personality disorder, and advocating for education, appropriate treatment and research for this painful disorder.
The person suffering from borderline personality disorder, a severe and persistent mental illness, may appear completely "normal" and may often have the ability to act "as if" he or she has no problems. In fact, many people with borderline personality disorder become professional actors. This "as if" ability of people with borderline personality disorder can be particularly devastating to those who love them.
I remember a night when my daughter locked herself in the bathroom after a rage attack. I called the police. She kept the police waiting outside the door for thirty minutes while I escalated to absolutely frantic concern. When she finally emerged, dissociated from her rage, she acted with regal serenity "as if" she were Grace Kelly. The police gave me that "raised eyebrow" look to which I have since become accustomed. It is a look all too familiar to families of people with borderline personality disorder who feel foolish and embarrassed when authorities arrive to assist with a problem that now seems not to be there. It is "as if..."
If one combines the professional's attitudes toward people with borderline personality disorder with the ability of a high functioning person with borderline personality disorder to act "as if " - one is having dinner with Boyer and Bergman as the lights dim. The supportive family member is frustrated and confused by the patient's demonstration of the ability to effectively act out a denial of the illness, while the doctor minimizes or avoids it with dismissal comments like, "She's just a teenager. She'll outgrow it..." and the gaslights seem to dim, again.
The attitude of the psychiatric community towards borderline personality disorder is very complex. Many professionals fail to recognize borderline personality disorder or try to avoid making the diagnosis. It is a disorder-an illness-that polarizes professionals into non-professional behavior which can then be called stigma or counter transference or just plain "I can't stand this patient." The sense of frustration and of failure which professionals experience when treating people with borderline personality disorder makes some feel uncomfortable, inadequate or ineffective. This is usually blamed on the patient and, of course, on the family - bad patients from dysfunctional families.
NAMI, the National Alliance for the Mentally III, doesn't include borderline personality disorder in its advocacy efforts, as if they have decided "it is not a brain disease." Current research findings in neurobiology and psychopharmacology disagree with their unsubstantiated position, however, one can see how they justify it by pointing out that, until now, borderline personality disorder has been omitted from most epidemiological studies, and the American Psychiatric Association, the National Institute of Mental Health, the Center for Mental Health Services, NMHA and NAMI have yet to produce even a brochure explaining borderline personality disorder. This seems strange when you consider that borderline personality disorder makes up 2% of the general population, 20% of the inpatients and 11% of the outpatients in the mental health system, has a 10% suicide rate and fills our prisons, divorce courts and civil courts. Thus I have become Ingrid Bergman, complaining that the lights are dimming while everyone looks at me with that "raised eyebrow." Should I tell the emperor he is naked while others are admiring his invisible new clothes?
The person suffering with borderline personality disorder has a similar experience. Knowing that their treatment is inappropriate and their medication (generally thorazine) is not helping, they often quit treatment. Wouldn't you? They are then stigmatized, labeled treatment resistant and difficult patients. And so they are. Unless, of course you question the treatment offered by an antiquated mental health system that has not yet given up the gaslight for something more illuminating.
Living with the isolation that must accompany the experience of having borderline personality disorder requires a great deal of courage and a very strong desire to survive. In 1994 the New York State Office of Mental Health Information Service reported only 297 borderline patients in the State of New York. Knowing these numbers couldn't possibly be accurate, Dr. Charles Swenson of NY Hospital Cornell Medical Center and I compiled a provider questionnaire. Out of 39 responses, 997 patients with borderline personality disorder were reported. If you question any clinician or substance abuse counselor they will tell you how prevalent borderline personality disorder is in their facility and complain about how hard this population is to treat. Lectures or workshops on borderline personality disorder are always well attended. So many patients, families and providers are desperate for any information at all.
Borderline personality disorder patients are usually admitted to psychiatric hospitals through the emergency room after a suicide attempt. The patient usually makes four or five; one out of ten succeeds. These are tough odds. At a recent Suicide Prevention Conference not one of the presenters ever mentioned borderline personality disorder. An esteemed researcher presenting his findings on adolescent suicide also omitted discussion of borderline personality disorder. When I asked why he didn't mention an illness which effects so many adolescents, his response was, "Ah, yes. You're right, but it's a very difficult subject." Is that the gaslight I see dimming again? Because it is a difficult disorder, if we avoid discussing it, will it then, perhaps, go away? This professional avoidance is unacceptable to every parent or loved one of a person with borderline personality disorder who lives in fear of that middle-of-the-night telephone call and to the parent whose child repeatedly tries to commit suicide.
And what solace is it for the family whose child has died. Yes, it's difficult! borderline personality disorder can be fatal. Should we hush up and politely go away? Or do we go on till we have changed this professional denial of so serious and life threatening a problem? Yes, Dr. Esteemed Researcher, we agree "...it's a very difficult subject!" borderline personality disorder is co-morbid with anorexia and bulimia. Those who suffer from lack of impulse control will often use food as a means of acting out. At lectures on eating disorders it is rare to hear a discussion of how to deal with the anorexic who has borderline personality disorder. When I ask my usual questions, the faraway look wil1 come into the eyes of the presenter as he says, "Yes, we should be studying that, as it is related." The voice will then trail off as they quickly take another question. But, I persevere; I send them related research papers, I ask more questions, and I tell them about TARA -the Association for Personality Disorder. I pose questions at each and every lecture or workshop I attend. You can hear some say, "Oh, no...not her again!" Yes, there I am...somebody's relentless mother, asking researchers the questions practitioners are desperate to learn about and should be asking themselves. When I am not there, does anyone else bring up this stigmatized disorder? borderline personality disorder is spoken of in hushed tones, with a tinge of embarrassment-like syphilis or TB, taboo diseases at the turn of the century, or like AIDS when it first came to the public's attention. If we continue to allow borderline personality disorder to remain in the psychiatric closet we will never get our children the treatment they deserve. More questioners are wanted. More advocates are needed; a chorus of voices demanding that things change!
Males with borderline personality disorder are prone to domestic violence and rage attacks. They make up a large percentage of the prison population and seem to be resistant to treatment as usual. A leading specialist in schizophrenia who writes on the conditions of the mentally ill in the forensic system and advises families to be aggressive advocates and provoke wolf-like - confrontations recently, unashamedly, described borderline personality disorder as a "garbage bag diagnosis." I took his advice and advocated aggressively, with letters to him, and finally a confrontation with him-eyeball to eyeball, face to face. And what did he do, this champion I had admired from afar for his courage and knowledge on other issues? He promised me he would never again describe borderline personality disorder in those terms. Be assured we will monitor the keeping of that promise. It appears that to be a successful advocate one must perfect the role of professional pest. That is what I have proudly become.
People with borderline personality disorder can be helped by combining sensitive and up to date psychopharmacological treatment and effective new methods of cognitive therapy. This will keep patients out of expensive hospital beds and help them back into meaningful roles in the community. Why would our society choose to ignore what can work to help people whose neurobiological disorder causes them to wreak havoc on themselves, bring despair to their families, create problems in the work place, fill our prisons and jails, clog our courts with stalkers and lengthy divorce and child custody battles, and burn out therapists faster than our schools can turn them out?
Finding the answers to these questions will not be easy. But we are determined to play a prominent role in putting borderline personality disorder on the neurobiological disorders agenda. Some days I feel like Sisyphus pushing a huge rock to the top of the mountain. But, with TARA-APD and the people whose articles and experiences you will read in this edition, I know, at last, I am no longer alone. We are a growing community of mutual interest. To raise money for research, to create a family data bank and share our insights and information, and to advocate, advocate, advocate will, some day soon, turn out those metaphorical gaslights and illuminate the path to better tomorrows.
Valerie Porr, M.A. is a co-editor of this issue of The Journal and Executive Director of TARA Association for Personality Disorder whose offices are at 23 Greene Street, NY, NY 10013.