Editor’s Note: Dawn Sonntag and Kermit Cole have collaborated on an opera, For Life, that will be performed on January 15 at 9 pm Eastern Time. Dawn composed the music, and Kermit wrote the libretto. Their goal was to tell the stories of those harmed by psychiatric drugs. Below, Dawn and Kermit each describe how this opera came to be.
In the context of love and commitment, the words “For Life” elicit hope and trust. In the context of diagnosis, the words “For Life” resound like a hammer blow when they are preceded by words such as “symptom,” “incurable brain disorder,” and “medication.” What if, however, the suggested “symptoms” and supposed “brain disorder” are natural, transient responses to emotional and physical stressors? If so, then the “incurable” part of the “disorder” is as likely to be the result of toxic medications turned to by desperate individuals—and our current psychiatric system as a whole—out of a need for an apparently certain solution.
The words “For Life,” in this case, can be a self-fulfilling prophecy that turns transient stressors into permanent problems. According to UK psychiatrist Joanna Moncrieff, who openly challenges the claim that psychotropic drugs “correct a genetic chemical imbalance in the brain,” drug companies have become as powerful as countries. The financial deals they offer to both physicians and politicians who unquestioningly support them has led to a corrupt system in which negative outcomes of research are hidden for financial gain.
My newest opera, For Life, premieres online on January 15 at 9 pm Eastern Time as part of the Cleveland Opera Theater’s New Opera Works festival. It gathers the voices of people who sought help for the sorts of challenges that—once upon a time—were normal and ephemeral, if not even the basis for growth and future resilience, and have, as a result of prescribed medication, spiraled into ongoing disability, captives to a system of care whose research and diagnostics are compromised by the financial and guild interests.
My previous operas have all been based on true historical stories of struggle, pain, and survival that were not widely known. When I realized that three of my close family members who were seriously harmed by psychiatric medication were not anomalies but rather a few drops in a large bucket of world-wide medication-induced harm, and that I had dodged possible devastating harm myself via the luck of having a physician and therapist who understood the dangers of these medications and suggested alternatives, I felt compelled to set this story of corruption, suffering, and survival to raise the public’s awareness of this issue.
Because this is a sensitive and controversial topic, deeply personal not only for myself but anyone likely to work on or hear the opera, I wanted to be sure to include the perspective of others who have been personally affected. I discovered that there were many support groups—with thousands of members—for individuals suffering damage from benzodiazepines, antidepressants, and antipsychotic medications. Individuals commonly report that they had been leading an active, mostly happy life until receiving a diagnosis and prescription for what might have been a temporary bout of insomnia, depression, or anxiety caused by life struggles like childbirth, death of a loved one, divorce, job stress, or financial issues. When they tried to discontinue the medications, they were plunged into a nightmare of emotional and physical withdrawal symptoms. Upon reporting these symptoms, their physicians often denied that they could be caused by the medication, even claiming the drug had “uncovered” mental illness, despite these individuals never having experienced such issues prior to the medication.
Reaching out to the community of people affected has added another dimension to the creation of For Life. In the course of my research, members of support groups privately messaged me with thanks for my words of encouragement. A young man, Angel, had posted that he felt hopeless and suicidal after three years of severe, unrelenting insomnia that began after he was prescribed benzodiazepines for insomnia. Ironically—but all too often the case—his insomnia became much more severe after he started the benzo. The severe insomnia caused him to become psychotic, leading to a schizophrenia diagnosis—although he had had no symptoms of schizophrenia before that—and a cocktail of psychiatric prescriptions that included more benzos, antidepressants, and antipsychotics.
He had discontinued the benzos, he told me, but he was still on an antidepressant and an antipsychotic, Zyprexa, a drug that had already been under scrutiny because its maker, Eli Lilly, tried to hide information about dangerous side effects. He was so fatigued that he no longer could read or write more than a few lines of text; he was merely existing, living in an endless haze of severe fatigue, and he spoke of wanting to end his life to escape the torture. Finally, his messages to me stopped and his Facebook page disappeared. Stories such as Angel’s drive For Life’s mission to give as loud a voice as possible to the many voices that have gone silent.
In the past, I have written the librettos for my operas. I enjoy the process of shaping the story and creating the characters as I create the music. However, I also wanted to be sure to include the perspectives of professionals who were actively engaged with these issues. After learning from the Mad in America website that founding editor Kermit Cole has a background in film, as well as an education in psychology from Harvard and an Open Dialogue-inspired practice working with people and families struggling with psychosis, I asked if he would serve as an advisor for the libretto. I was delighted when he offered to write it. We collaborated in shaping the story and characters, discussing our perspectives of the issues and characters we wanted to include. The libretto thus evolved to reflect both Kermit’s insight as a mental health professional and my experiences as a family member.
The goal of For Life is to spotlight truths about psychiatric medications that have been obscured or suppressed by drug companies and the American Psychiatric Association. Those who criticize this system are accused of “stigmatizing” mental illness, or of conspiracy theorizing. However, in an era when abuse, racism, and discrimination are beginning to be addressed in our country, we should take care to remember that not having seen or experienced an oppression does not mean that it does not exist. When the call to “destigmatize mental illness” becomes synonymous with “Trust your doctor and take medication without question,” attention must be paid.
For Life is not naïve about the severity of the distresses and dangers that lead people into these situations and accompany their routes out of them. The severity of the problem is why the subject deserves—even cries out for—treatment on an operatic scale.
I feel compelled to remind the reader that psychotropic medications should never be suddenly discontinued unless a physician has specifically directed it, and with the patient fully informed of the reasons and the risks associated with discontinuation and full support for the return of symptoms that often accompany withdrawal.
However, although For Life is a sobering critique of the pain and damage that can result from the medicalization of human emotion, it concludes with a message of hope: that the support of a caring community that listens, accepts, and encourages rather than diagnoses, sentences, and condemns can help people through their personal journeys of suffering and discovery, potentially leading to healing and new life … For Life.
When I have tried to comprehend the experiences of so many people prescribed benzodiazepines, neuroleptics, and serotonergic drugs, I couldn’t imagine how to convey the nightmares they were attempted to describe. Their despair was not only for what they had experienced; it was for the fact that they could not adequately convey the upside-down world of psychiatric diagnosis and treatment they had become lost in. There was so much more behind their eyes than they seemed able to find words for. I grew to love so many people who, in the depth of their suffering, were learning fundamental things about being human that—like atoms—are not revealed until they are smashed, and light pours forth.
I had the great fortune to play a role in helping get unheard voices out when Robert Whitaker asked me to help start the Mad in America website. We aspired to make it as direct and unfiltered a forum as possible. Even so, I am wary about the role of media in attempting to convey difficult things, if only because inadequate attempts risk allowing people to mistakenly believe they understand a person’s experience, and worse, feel they have done something about it.
However, having worked on Mad in America literally night and day for its first four years, I found that I needed to return to full-time direct service work. I needed the experience again that being with people in their struggle without any intention to communicate it to others is both a necessary and—on some level, at least—sufficient. I believe that Bob has done and continues to do that with integrity within his role as a journalist, but my primary identity lay in doing the work itself and I needed to return to doing it out of the public sphere for a while. I needed to remember, in the face of a seemingly intractable problem, that our success is not only measured by change; it is measured by simple willingness to take our turn; sitting with sorrows that have always been, aspiring only to lessen them a little for those that come after.
Then, composer Dawn Sonntag approached me to discuss the project that became For Life, which will be performed online this December. I remember thinking, “What could come closer to conveying these experiences than opera?” What medium has a better potential to giving a full-throated voice to the voiceless, while at the same time capturing in music the poignant inadequacy of words? An opera, I thought, might be capable of exploring the vast world I had glimpsed behind so many people’s eyes; a world that mere words can only point toward. Dawn, Scott Skiba (the director of the Cleveland Opera Theater), and I hoped to capture the experiences of the many people we have known and loved who had been lost in the strange world of psychiatric diagnosis and prescribed drugs.
Working together began, literally, as a dream, when Dawn told me about a dream she had in which she was lost in the woods with a loved one, trying to find their way out. The Byzantine world of psychiatry seemed perfectly at home there; an enchanted forest where “symptoms” are worsened by the same drugs purported to treat them, and then declared to not only vindicate the initial diagnosis but “unmask” other ones. Where “symptoms” are multiplied by withdrawal but further labeled as proof of an illness. The exasperating magical fallacies of psychiatry seemed perfectly at home in the world of enchanted rings and valkyries.
I grew up in a house full of opera on old 78 rpm records, with librettos on fragile yellowed paper that ran side-by-side with their English translation. By high school I was familiar with words and concepts—death, madness, abortion, suicide—that were otherwise under-represented in first-year French. But it had never occurred to me to write an opera until Dawn approached me and I found that the world of psychiatry had prepared me for it.
I have marveled at and tried to express, for example, the brilliant travesty of the legal concept of “Learned Intermediary,” by which pharmaceutical companies have twisted out of culpability in lawsuit after lawsuit for the effects of drugs from which they earn billions. The concept shifts responsibility to prescribers—the “Learned Intermediaries”—who were in actuality acting on information furnished entirely at the discretion of the drug companies. The doctors, in hall-of-mirrors fashion, are further protected by “off-label” prescribing, in which they are free to use any approved drug in any way.
I had tried and despaired of express the perfection of this travesty until “Learned Intermediary” perfectly substituted for “Modern Major General” in an early draft of For Life. Dawn and I laughed uproariously. An echo of that joke survives in For Life, which deals mostly with sterner stuff, but it stands as a good example of the paradoxes we grappled with.
In our enchanted twilight forest, the hope of eliminating fear and sadness—magically, without risk, and without consequence—is an accepted reality. Deeper in the forest, transient experiences and apparent cures are magically transformed into supposed knowledge of a person’s trajectory—“for life.” Diagnosis is a one-way path into a dark forest from which nobody returns. Those who know a person best become, at best, obstacles to their loved one’s “treatment,” ultimately to be cast aside as if the person being “treated” has some other world to live in than one in which they are loved.
In our modern world, the deepest human experiences and aspirations have become the province of suspect authorities with unproven science. Dawn and I tried to create a magical world in which it is possible to take that authority back. To whatever degree we succeeded or failed, the experience whetted our appetite and we are at work on our next opera. Whatever you may think of opera, it is a medium that can aspire to depict the dream we are, hopefully, waking up from.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.