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The Role of the Human Connection in Mental Health: An Interview With Author Jay Neugeboren
Marc E. Agronin, MD, senior vice president, Behavioral Health and Chief Medical Officer for MIND Institute, Miami, Florida, interviewed acclaimed author, Jay Neugenboren, about his book, Imagining Robert: My Brother, Madness, and Survival: A Memoir, and his experience being a caregiver to his brother who struggled with schizophrenia.
There is a story by writer Jay Neugeboren that has inspired me for many years. For decades, Neugeboren served as a caregiver for his brother Robert who struggled with schizophrenia and wrote about his experiences in Imagining Robert: My Brother, Madness, and Survival: A Memoir. After many years of inadequate responses to countless antipsychotic medications, Robert had a dramatic response to one of the newer atypicals, and was heading toward discharge from the state hospital. In a sudden and tragic turn of events, however, Robert decompensated after learning that his longstanding, supportive social worker was transferred to another hospital. Neugeboren was shocked and perplexed by this reversal, and asked: “Why did the medication that worked so well—so miraculously—on Monday stop working on Tuesday?” His answer: "Because Robert was deprived of a relationship that had been a crucial element in his recovery.” Neugeboren went on to relate that the lesson learned was one he encountered repeatedly in his interviews with hundreds of recovered patients:
"Some pointed to new medications, some to old; some said they had found God; some attributed their transformation to a particular program, but no matter what else they named, they all—every last one—said that a key element was a relationship with a human being. Most of the time, this human being was a professional—a social worker, a nurse, a doctor. Sometimes it was a clergyman or family member. In every instance, though, it was the presence in their lives of an individual who said, in effect, ‘I believe in your ability to recover, and I am going to stay with you until you do’ that brought them back."
My own lesson learned from Neugeboren was that the healing power we have as clinicians may begin with pills and other therapies but must include the hope and commitment we give to the patient. In his subsequent work entitled Transforming Madness: New Lives For People Living With Mental Illness, Neugeboren expands on this message, presenting both a sobering view of the limits of the mental health system in the United States along with his hopeful observations of the role of community mental health programs and psychotherapeutic approaches that enable individuals to continue living meaningful and functional lives despite chronic mental illness.
In my own practice as a geriatric psychiatrist, I encounter individuals like Robert everyday who, along with care partners like Jay, are struggling with the tribulations of chronic mental illness and the innumerable stresses and disappointments that arise. The best of evidence-based treatments often sputter and fail, sometimes out of the blue and without clear explanation. Aging patients with neurocognitive disorders and their care partners have the added stress of trying to manage a progressively worsening cognitive and functional mental state that is further pilloried by recalcitrant emotional and behavioral symptoms and disorders. Clinicians struggle mightily to maintain hope that something will make a difference, other than simply giving up and relegating these individuals to custodial care. We are further weighted down by the COVID pandemic, which has brought restricted access to care, social isolation, neurocognitive complications, and professional burn-out. This is where Neugeboren’s message is so crucial to what we do: there is always hope for improving the lives of patients and their care partners that lies within our own persistent, courageous and humane ability to say that we are here to go the distance with them.
As I have remained so moved by this message over the years, I sought out Neugeboren to ask him more about his work and message. At age 83 he remains active as a writer, teacher, single parent to 3 grown children and 4 grandchildren, and a volunteer and activist working with organizations that promote mental health awareness, housing options, and civil rights. His reflections on aging reflect my own philosophy of age-conferred strengths that I’ve written about in The End of Old Age, as he related: “In some ways these are the best years of my life. I weigh the same as the senior year of college. I’m fit. I write every day. I have good friends. I date. There is nothing left to prove anymore. These are very good years—free in a way that my early years were not.” His attitude is not based on having a charmed life, as he has faced severe illness—a burst appendix and loss of vital signs at age 2, cancer at age 19, and an emergency quintuple bypass surgery at age 60: “I have seen the angel of death a couple of times but he hasn’t gotten to me. I keep on going.”
Neugeboren faced a particularly challenging personal situation at age 60 when he had to have open heart surgery. In his 2003 book, Open Heart: A Patient’s Story of Life-Saving Medicine and Life-Giving Friendship, he wrote about how got through it with the help of 4 close physician friends in ways that echo what he has seen with others facing major life stresses:
"I would say the same thing in every case was that it was always the intervention and presence of an individual—professional or not—who committed themselves to the person— ‘I think you can make it and I will sit with you as long as it takes.’ In all my years and everyone I’ve met in my life and work—that hasn’t changed. Timing makes a difference. A convergence of a time in the person’s life and the presence of someone. Always, always a person and always a relationship."
Robert Neugeboren passed away 5 years ago at age 72—the same age as his father—which was, to Jay, “an emblem of his resiliency” despite everything he had gone through. It was a heartfelt loss for Jay given how close the brothers were, but with the consolation of seeing Robert experience “the best years of his life” over his last decade living in several group homes.
In the end, it was Jay himself who served as that perpetual beacon for Robert, always present and always sending a message of hope. The story of Robert, then, is really a powerful story of 2 brothers with several essential messages for clinicians in every sphere of medicine: get to know the patient; form a relationship that deepens your knowledge and commitment to them. Don’t give up but nurture hope for them every step along the way. Over time, this mindset must be a constant companion for every therapeutic approach.
References
Neugeboren J. Meds alone couldn't bring Robert back. Newsweek. Accessed December 7, 2021.
Marc E. Agronin, MD, a summa cum laude graduate of Harvard University and the Yale School of Medicine, is a board-certified adult and geriatric psychiatrist and the author of the acclaimed How We Age. Since 1999, he has served as the director of mental health services, clinical research, and the outpatient memory center at Miami Jewish Health. He has published essays in the New York Times and Scientific American Mind and writes regularly on aging and retirement issues for the Wall Street Journal.
