Joyce Burland recalls, during one of her first meetings for families of mentally ill people, seeing a silver-haired couple who looked serene. They had twin sons, both with schizophrenia, and had been grappling with that reality for about 60 years.
The couple hadn't abandoned their sons, and they were very much involved in their lives. Burland, whose 30-something sister with five children had recently become delusional - "it was a mess," Burland said - wondered how she could achieve anything approaching serenity. She remembers the sight of that couple as "a guiding moment."
A clinical psychologist, Burland would go on to write a 12-week course for families of people with mental illness, which is used across the United States, and in Mexico and Italy. Her course, called Family-To-Family or F2F, is intended to move people from panic and struggle to living in relative peace with a long-term, debilitating illness.
"Our job is to move the illness to a factor in families' lives, not the only fact, so they can live with joy and spontaneity while undertaking a really long job," said Burland, who is now the national director of the Education, Training and Peer Education Support Center for the National Alliance on Mental Illness. The organization advocates for individuals and families affected by mental illness.
The success of Burland's program, which has served about 375,000 people since its start in 1991, made me wonder whether it could help people living with another arduous, life-long problem: addiction. Last year, 442 people died of opiate overdoses on Long Island - a record, up from 403 a year earlier. This is a battle we are losing to heroin, oxycodone and fentanyl.
People in the anti-drug community on Long Island say they have support groups, but nothing as extensive as F2F. Burland agreed that her program could be useful for families coping with addiction - not as a replacement for something else, but as one more tool.
The first few weeks of the course help people through the initial shock. The course outlines information about the medical basis for mental illness, therapeutic drugs, and what is a symptom and which behaviors are changeable. Burland updates the curriculum to reflect new research.
The middle third of F2F describes what it's like for a person living with mental illness and, more recently, Alzheimer's.
The final sessions help families cope with mixed emotions - anger, guilt, resentment - and return to caring for themselves instead of living life under siege. They set rules about giving money or shelter, for example, until the ill person agrees to take medication.
Jeannette Wells of Springfield Gardens is a volunteer who leads classes twice a year. She attended two days of training in Albany to become certified with NAMI to teach F2F. She said the classes create a natural community who can rely on each other later.
F2F was revolutionary in its day. Psychiatry for roughly a century had blamed mental illness on dysfunctional or abusive parents, Burland said. Some of that stigma persists, making it hard to admit to a problem. In that, there are parallels with drug and alcohol abuse.
While Family-To-Family has served only a fraction of the millions who might benefit, it has created a core of advocates in every state who can speak knowledgeably to doctors and social workers, and who have won milestone legislation requiring parity in health insurance coverage.
Whether parity is always enforced . . . that's the next challenge.
First published in Newsday.