A family affected by schizophrenia supports NARSAD with the belief that future generations will be better off through the funding of scientific research today
From The Quarterly, Fall 2010
Christine Phelps remembers how, when she was a little girl, she and her mother, Sharon, would listen to music together. “I had very long hair, and my mom would brush my hair and we’d sing Carole King songs. I still know every word of every song of our favorite album.”
But the loving mother, who ran a comfortable, well-ordered home for her husband and three children, held a full-time job, painted pictures, refinished furniture and loved to sing along with Carole King, would sometimes become, Christine says, a different, “scary” mother. That other mother would tell her perplexed daughter that “people were listening to them through the radio, or that a mind machine was controlling her thoughts, or that our neighbors, who were good friends, were hit men hired to kill her. She would try to telephone her father, who had died years earlier, frantically dialing numbers at random.”
Sharon, now 67, has been battling schizophrenia all her adult life. She had her first psychotic episode in college, not long after she’d started dating Thomas, a fellow student at Penn State. “The story goes that she was in the infirmary for six weeks, and he sent her a love letter every day,” Christine says. Her diagnosis at that time was uncertain, but not the love, and when they graduated in 1965, Sharon and Thomas married. Thomas worked in sales. Sharon, an art major, taught art in high school and middle school for many years, and later had a second long and satisfying career in customer service at a department store. Christine, the oldest child, was born in 1968, brother Ken two years later and sister Carrie, the baby of the family, five years after that.
Resiliency and the determination to live a normal family life have carried the family through 45 sometimes rocky years. “My dad would always say, ‘together there’s nothing we can’t handle,’” Christine says. “And it did always amaze me that mom would have an episode, and when it was over, go back to her life as if nothing had happened.”
It was a disconcerting on-and-off pattern during many years through which the search for the right medication regime for Sharon was, Christine says, “basically trial and error.” Christine learned early on how important resiliencey could be. She recalls that in sixth grade, during a period when her mother was having a particularly hard time, she confided the situation to two close friends, “and they turned on me. From then on they acted as if we weren’t friends anymore.” So, Christine says, “I got new friends.”
While the childhood incident is no longer painful, it instilled in her a lifelong anger at the stigma attached to mental illness. In her eyes “we were a regular middle-class family. People like everybody else. My mom went to college, worked, raised three children. She just lived with this extra struggle.”
But as Christine well knows, love doesn’t conquer all. Nor do pills heal all. Although most of the time Sharon is stabilized on antipsychotic medication, which mostly keep at bay the so-called positive symptoms of the disease — the voices, hallucinations and paranoia — the medications currently available can’t do much for the negative and cognitive symptoms. These symptoms include problems with attention, memory, drive and thinking, which increase over time to become for most people with schizophrenia, the most devastating effects of the illness. At the time Sharon was diagnosed it was not believed that “talk therapy” or CBT would be helpful to her. That belief has changed in recent years with some compelling case studies demonstrating the efficacy of “talk therapy” for people with schizophrenia, but Sharon was not exposed to this type of therapy early on.
In recent years, Sharon, now retired, has started to have difficulty keeping her thoughts on track, following conversations or initiating activities. She no longer paints or takes classes at the senior center. “She watches TV and sleeps a lot,” Christine says. “She’s not the person she used to be.”
Five years ago, this brave family was dealt a second blow — Christine’s brother, Ken, was diagnosed with schizophrenia. It was an unusually late onset — he was 35 at the time — but Christine had noticed disturbing signs a year or so earlier. By that time, married and working as a speech therapist, she was living in Chicago. Ken, like the rest of the family, lives in Detroit. He had come to visit her, and she was hearing him say “the kinds of things my mother would say, and the more he talked, the more horrified I became.”
It was around the time of her brother’s diagnosis that Christine learned about NARSAD. “I would read all I could about mental illness, trying to understand what had happened to my family, and a lot of the publications I found were from NARSAD, so I became a donor.”
Christine wants research to find out what happened to her family. “I don’t know whether my mom’s current problems are the effects of long-term medications or that just by having mental
illness your brain changes.” In retrospect, she realizes that her brother was always “a little different,” but his symptoms weren’t recognized as such.
She feels particularly urgent about research toward prevention. “My sister, Carrie, has a 14-year-old son. He’s seen what his grandmother and uncle go through, and it’s very scary for him. He’s asked my dad, ‘is this going to happen to me?’”
People like Christine Phelps, who live with the day-to-day heartbreak of mental illness and put their hope in scientific research, may often feel that the pace of progress is agonizingly slow. Their frustration is understandable, but the inescapable fact is that the human brain is complex; it’s been called the most complex system in the universe. Neuropsychiatric research has, in fact, accelerated enormously in the last decade, probably more so than in any comparable previous period. And NARSAD has played a key role in funding cutting-edge brain and behavior research to find answers for Christine and her family. NARSAD researchers have been at the forefront of discovery, developing new, ever more sophisticated and powerful methods for imaging the brain: to discover how it looks and works in real time.
Genetic research is critical to understanding schizophrenia, as dramatized by families like Christine’s with multiple affected members. But although almost all mental illnesses have a large genetic component, they’re not like sickle-cell anemia or other diseases that are caused by errors in one or a few genes. Scientists now believe that schizophrenia arises from the contributions of many genes and genetic mutations interacting with environmental factors.
In labs across the world scientists are finding schizophrenia-related genes, uncovering novel molecular mechanisms, testing novel pharmacological compounds and devising better psychological interventions. Much of this research was initiated with NARSAD support, and this is why Christine’s family has lent the organization its support.
Christine’s family remains close and caring. She wanted to disclose her own personal story in the hope of encouraging others to support NARSAD in its quest to understand and conquer mental illness. She remains hopeful that the time will come when other families won’t have to go through what hers has experienced. But while acknowledging the difficulties and the anguish, she still feels “for the most part we have a good life.” Then, punctuating her words with her infectious laugh, she adds, “of course, with a few quirks.”