Before moving to the Capital Region, I spent my early life in Yonkers with my large baby-boomer family of seven (parents plus five children). My oldest brother was Paul, and to a person, we all remember the cold December night in 1966 when the ambulance arrived. Paul had fallen in the bathroom after studying long into the night for his semester finals at Manhattan College. Paul was trying to maintain his college deferment from serving in Vietnam…and facing a failing grade in computer programming, and loss of his exemption. Only nine at the time, I was confused, scared, and largely unaware of what had happened.
A life broken, with wider damage
For decades, doctors, pastors, friends, relatives–everyone–were uncertain what exactly happened to Paul that night. And because of that, one life was nearly extinguished, a family was torn apart, and a highly intelligent person’s contribution to the community was lost.
I remember admiring Paul as the youngest to the oldest in the family. He had a confidence and a strength about him. He ran a huge paper route that he managed like a well-run small business. When the pope visited New York, Paul played a role leading his high school group to the ceremony and mass at Yankee Stadium. We shared a love for sports, hockey, and the New York Rangers, in particular.
Paul was diagnosed with epilepsy when he was hospitalized. I remember the drugs digitalis and dilantin being spoken about…the very same medications we were giving our pet dog, a beagle, whose breed is prone to this disease. I was in charge of getting the dog his meds every day, twice a day, and getting the prescriptions refilled every month, so it was a hushed coincidence.
Dr. Kay Redfield Jamison, the world’s leading expert on manic-depression says:
“Mental illness is awful beyond words or sounds or images…it bleeds relationships through suspicion, lack of confidence and self-respect, the inability to enjoy life, to walk or talk or think normally, the exhaustion, the night terrors, the day terrors. There is nothing good to be said for it except that it gives you the experience of how it must be to be old, to be old and sick, to be dying; to be slow of mind; to be lacking in grace, polish and coordination; to be ugly; to have no belief in the possibilities of life, the pleasures of sex, the exquisiteness of music or the ability to make yourself and others laugh.”
What followed for Paul was a spiral downhill and marrow-sucking experience for my parents, for my siblings. He never returned to college. He slept long days and watched TV until morning, disrupting nearly everybody’s routine. Eventually and heroically, Paul secured and held a clerk’s job at a book distributor. He rose early for a two-hour commute, arriving home in time for dinner and sleep, all to do it all over again. He was terribly underemployed, mistrusted at work. And then came the delusions, mostly about co-workers, some of whom I suspected weren’t real. I cringed when I overheard them and felt terrible for my father to whom it fell the sad task to listen.
Then one morning, by chance, as my train was pulling in, I saw Paul’s walking down the platform in Grand Central Station. I watched him, hunched over in physical and emotional lethargy and pain. My God, I thought, he could be easily robbed and beaten. When my train stopped, he was gone in the crowd.
One day shortly after, he came home from work, exhausted, and never went back. His working life was over, in his late 30s. My parents spent two decades supporting him, feeding him and Paul returned in kind, as much as he could. But no more doctors’ visits, no disability or SSI to support the tight household budget. The door was shut. His situation was not to be discussed.
When my father passed away suddenly in 1993, it fell to my mother, sister, and me to provide support. My mother took the brunt of the burden and suffered stoically, sharing very little about their daily lives. Toward the end, a friend confided in me that she often saw tears in my mother’s eyes when they would all gather. “Distracted, always,” said my mother’s friend.
Eventually, when my mother died, Paul entered a dangerous space: alone, frightened, friendless, now without daily support. My sister, who lived upstairs, did her best, though she was now a widow with children to raise. She put a lock on her bedroom to protect against Paul’s middle-of-the-night intrusions. His delusions were growing darker. Interventions by the siblings all ended in verbal and physical threats.
Finally, my sister, who had learned some hard lessons in navigating the social work system, managed to get Paul to a psychiatric doctor. Paul put down his guard, remarkably, and let her drive him to the hospital. The diagnosis was fast and on-target: Schizophrenia. Paul now receives the treatment he so needed for three decades. He lives in an assisted-living facility. He’s clear, he laughs, he helps people. He’s not bitter. He’s the big brother I remember.
I view this story through a different lens now. I had the privilege of working with a renowned brain science foundation, which let me produce the Sourcebook of Brain Science. I chafe only at the fact that the information in the book could have spared Paul, my parents, and my siblings so much suffering.
The book is being re-released as an e-book by a local organization, A Thousand Moms. A party is being held at Proctors Cafe on Sunday, November 2, 4-6 pm.
Some of the wonderful, brilliant, generous scientists and doctors speak out against the stigma of mental illness and our progress in treating it:
Dr. Leon Cooper, a Nobel laureate, writes in the Sourcebook:
“The gains neuroscience has made, in just a few years, in areas as diverse as learning and memory, emotion and stress, behavior and pain…translate into new hope for treating developmental disorders, schizophrenia, addiction, alcoholism, manic-depressive illness, and other maladies that inflict misery on millions….True, new technologies can increase expenditure. It is expensive to use magnetic resonance imaging to plan neurosurgery for epilepsy, or to implant the newly approved neural prosthesis that enables some quadriplegics to feed themselves, or to treat manic-depressive illness or multiple sclerosis with new drugs. But these expenditures extend lives that would have been shorter, save lives that would have been lost, and preserve a quality (and productivity) of life that would have been diminished.”
The presentation and book party for the Sourcebook of Brain Science begins at 4:00 pm, Sunday, November 1 at Proctors main cafe and runs until 6:00 pm. Admission is free and e-copies will be distributed at no cost. For more information, call A Thousand Moms at 952-1257.
Dave Balog teaches family financial essentials. firstname.lastname@example.org; 952-1257