The Brain & Behavior Research Foundation (BBRF) is unraveling the many mysteries of mental illness, autism spectrum disorders, and many other diseases and disorders of the brain. I would like to thank Dr. Jeffery Borenstein and his team at BBRF for their help in bringing our salute to their vital scientific research to the readers of Behavioral Health News.
I was inspired to write this personal perspective by two things: BBRF’s article about Dr. Lisa Pan and her patient Bruce on the following page, and by my personal recollections of Constance and Stephen Lieber, the driving force behind the National Alliance on Schizophrenia and Depression (NARSAD).
Following my own experience with treatment-resistant depression which began in my late 30’s, I started the precursor to this publication which was then called Mental Health News.
I was getting back on my feet in 1998 when I had the idea to take my experience battling depression into creating a publication to educate individuals and families struggling with mental illness about the latest treatments and the organizations that were in the community to help them. Since I was rebuilding my life from scratch, I decided to dive right into it.
I went out and met with many mental health organizations and many of the leaders of the mental health community in New York State to get their advice and participation in launching the first issue of Mental Health News. One of the first people I met along the way was Constance Lieber the President of NARSAD. I called her on the phone and told her about my new project and she graciously invited me over to her home just minutes from where I was living in my supported-housing apartment in the neighboring village.
I told her about my journey through the depths of depression and how I wanted to help others who were traveling the same path. She immediately understood. Before leaving, I asked her if she would help me by featuring a column in Mental Health News about NARSAD. She readily accepted the idea and did so for a number of years.
Constance Lieber was an inspiration and a mentor to me during the early days of Mental Health News. I would often call her and ask her advice on an article I had received or if an organization that wished to be included in an issue was known to be a trusted representative of the mental health community. She would always give me sound advice. In addition, she would always go on to give me a list of five or more other people I should reach out to in order to create an issue that was a great success. I will never forget her.
A Tribute to Constance and Stephen Lieber As Reported in the New York Times
Constance Lieber transformed her family’s experience with significant mental illness into a life suffused with meaning, purpose, and extraordinary effectiveness. Few people could imagine the breadth and depth of her interests, ranging from the most creative modern art to inspiring architecture, exhilarating music, and insightful studies of neuroscience and human behavior.
Guided by her compassion, dedication, and curiosity—as well as her personal relationships with scores of leading psychiatrists and neuroscientists—Constance informally advised thousands of parents who were desperately seeking better treatments and cures for their mentally ill children. During their sixty-five-year marriage, Constance and her husband Stephen A. Lieber shared enduring love and intense intellectual insights to transform the field of basic and clinical research into the origins of schizophrenia and other mental illnesses.
Since 1980, Constance and Steve have been among the leading public advocates and philanthropic supporters of schizophrenia and depression research in the US and around the globe. Their efforts included the creation of significant clinical and scientific institutions to support emerging discoveries in the fields of biological psychiatry and patient services.
For over twenty-five years, they gave exemplary leadership to the Brain & Behavior Research Foundation (formerly NARSAD), the world’s largest private funder of mental health research. Constance served as President from 1989 to 2007. In 2014, their activities were honored by the American Psychiatric Association with a Special Presidential Commendation, stating “Constance and Steve have provided unwavering moral and material support to unravel the mysteries of the brain, and to better understand and treat mental illness.”
In 1987, the Liebers established an annual award for outstanding achievements in schizophrenia research. To date, two Lieber Prize winners have gone on to win Nobel Prizes. At Columbia University, they founded two centers of excellence – the Lieber Recovery and Rehabilitation Clinic for Psychotic Disorders and the Lieber Schizophrenic Clinic. At Williams College, they were the founders of the undergraduate neuroscience program. In 2011, they created the Lieber Institute for Brain Development, affiliated with the Johns Hopkins University, to integrate new discoveries in developmental neurobiology and genetics in order to achieve clinical advances that can change lives. Constance was a graduate of Brooklyn College and attended Columbia University for her post-graduate studies. She received honorary doctorates from Williams College and Brooklyn College. She received over two dozen awards to recognize her outstanding leadership, including: the Brooke Astor Award for Outstanding Contribution to the Advancement of Science, the Women in Science Award from The Rockefeller University, the Distinguished Service Award from the Yale University’s Department of Psychiatry, and the Humanitarian Award from the Society of Biological Psychiatry.
Dr. Lisa Pan’s Research on Metabolite Replacement Therapy
In addition to the other wonderful BBRF articles in this issue, I urge everyone to read the article about Dr. Lisa Pan, her patient Bruce, about the breakthroughs she and her colleagues are having using “Metabolite Replacement Therapy,” a treatment which shows great promise for those with untreatable depression. Their scientific research, supported by the BBRF, in finding a connection between the body’s metabolism and depression, is complex and awe inspiring, and the personal vignette about Dr. Pan’s patient Bruce was something I can personally relate to.
How Depression Can Get So Bad You Can No Longer Function Anymore
As Dr. Pan’s article states: “Of the 15 million American adults diagnosed with major depression, 15 percent do not respond to any available treatments. They, like Bruce, have treatment-refractory depression. In many cases the illness poses significant risk of suicide.”
The account of Bruce’s battle with major depression was very similar to my own and I am sure, countless others who have experienced it. But what does it really feel like on a day to day, month to month and year to year basis?
A person’s history before their illness, and the financial resources and family support system they may or not have is important. However, being that seriously ill can feel like your whole life has fallen into a dark pit that is so deep you cannot escape back to reality.
In Bruce’s case “He went from being a high-functioning professional, designing and repairing submarines for the Department of Defense, to someone who could barely muster enough willpower and cognitive capacity to shower, eat, and show up for work.” In my case, I had earned a BA in Psychology and a Masters Degree in Social Work. At age 35, I was married and the happy father of my son David. Then, something happened that changed everything. The world to me started to become gray then black as a major depression took hold of me. People around me couldn’t understand my predicament—it was horribly frightening.
On Becoming a Professional Appointment Keeper Seeking a Way Out
Twenty years ago, when I was in the midst of having this major breakdown (as it is commonly called), I began searching for an answer to what was happening and desperately tried to find a physician or a therapist who could help me find my way back to my normal self. It took years of going to appointments, trying a multitude of medications with their many side-effects, experiencing the stigma and shame of having a mental illness, being hospitalized when in total despair, losing jobs due to recurring episodes, and attending outpatient programs to assist me in becoming normal again. It was a long and difficult journey.
Stigma, ECT, Supportive Housing, and Rebuilding Your Life Through Recovery
Stigma is not something that can be understood in the laboratory. It’s people’s lack of understanding about an illness or another person’s disability. Only by continued education across the nation, can we ever hope to have a more informed society. This lack of understanding and discussions surrounding it was clearly evident in the recent surge of celebrity suicides reported in the media. Why weren’t the early warning signs heeded?
In Bruce’s case he was given ECT and it did not help him. According to the Mayo Clinic’s website, ECT often works when the full course of treatment is completed, but it may not work for everyone. Much of the stigma attached to ECT is based on the way it was administered many years ago, but it is much safer today especially when medications and other forms of therapy have failed to help individuals with severe depression get better.
Nobody simply jumps out of their illness and back into normalcy without some form of recovery. In most cases it takes time and deliberate effort on the part of the individual. Many recovery programs and drop-in centers run by consumers are available in most communities. They are a great help in the healing process. Housing programs that help people recovering from mental illness and other conditions are another essential part of the recovery process. Receiving supportive housing during one’s recovery is one of the most important components to getting better.
BBRF Scientists: Offering a New Future to Treating Illness
Is the next scientific breakthrough for people suffering with depression, anxiety, addiction, attention-deficit hyperactivity disorder, autism, bipolar disorder, eating disorders, obsessive-compulsive disorder, post-traumatic stress disorder and schizophrenia only moments away? It may be, thanks to the funding and support of the Brain & Behavior Research Foundation. Their scientists are investigating the causes and cures of illnesses every day. This is the future and we are seeing it now! It is my hope that Behavioral Health News can continue to follow the advancements and breakthroughs uncovered by the BBRF and bring them to the attention to our many online and hard-copy readers.