Families Helping Families In National Alliance For Mentally Ill

By Dottie Evans

He was an altar boy, an All-Star baseball player, and a boy scout­­ –– the oldest of four children in a close and loving family. Although Lucy and Joe Freeman of Newtown both remember that their son Joe’s birth was unusually difficult, they say his childhood and growing up years were relatively normal.

Young Joe excelled in art from the age of 9. After graduating from high school at Oratory Prep in Summit, N.J., near where the family then lived, he was accepted into Rutgers University because of his remarkable artistic talent and promise. Then life turned upside down for the entire Freeman family.

In October 1984 when Joe, aged 22, was in his third year at Rutgers, he suffered what could only be called a total psychotic breakdown. It was a devastating episode of chronic schizophrenia, and it happened at home while the family was gathered around the kitchen table –– except for Lucy Freeman who was in the hospital having surgery. This shocking episode signaled the beginning of their son’s struggle with schizophrenia, which is a major mental illness that afflicts one in every 100 Americans.

Now 20 years later, Joe Freeman is 43 and has found a way to cope with his illness. He lives an orderly, independent life. He can drive a car, balance his checkbook, does his laundry, and also his art work. He has worked as a bagger at Bethel Food Market and he now he is looking for a new position in retail.

Every weekend, Joe Freeman visits his parents for pizza, and summer will see the family enjoying the backyard pool together in their home on Birch Hill Road. Many of the friends who visit will include other families who have suffered from mental illness like Joe’s and have become close to the Freemans.

These milestone achievements in Joe’s life were hard won. It has taken skilled and timely medical intervention, followed by diagnosis and extensive treatment, as well as years of counseling for the whole family. Most importantly, a relatively new psychotropic drug called clozapine has been a large part of the solution, allowing Joe the ability to live on his own.

His parents will never forget the early days when the emotional trauma and uncertainty seemed nearly unbearable. They are determined to turn their experience with Joe’s onset of mental illness and recovery into a mission of hope for other families whose loved ones have suffered neurobiological brain disorders.

“When it happens, you don’t know what to do or where to turn. Even the doctors would take us aside and admit they were at a loss,” said Joe Freeman during an interview held April 5.

Besides owning and operating his research and consulting business, Mr Freeman has served as vice president for the Connecticut Alliance for the Mentally Ill.

“Whatever support systems are out there, they’re not well publicized,” Mr Freeman said as he described the sense of stigma that families feel when mental illness strikes.

“Things have gotten better as people become better educated, but it’s still there.”

Mental illness was not like mental retardation, he explained.

“You can’t see it. It seems alien and frightening. Families feel embarrassment and a terrible sense of loneliness. Nobody identifies with you and you don’t know where to find help,” Mr Freeman added.

1986 Pilot Program Led To Alliance

Shortly after the Freemans moved from New Jersey to the Danbury area in 1972, and while Mr Freeman was still setting up business, Mrs Freeman worked for a time at GE Capital to help pay the bills. After four years, she knew she needed to stay home and help her husband with his business since he went back to school to get his doctorate.

From 1984 to 1985, Joe Freeman was admitted into a pilot program at Danbury Hospital. He was subsequently admitted to Fairfield Hills where his mother said, “he received excellent care.”

In the beginning, however, finding the right drug and the right dosage for Joe Freeman seemed to be an agonizing process of trial and error

“He was having severe reactions to the different medications, developed a neuraleptic syndrome, and almost died,” Mr Freeman remembers.

“We were very lucky because our family was close and he was compliant. He felt supported by a comfort zone. I can’t imagine how it must be for someone who has no family and no medical support.”

From 1986 to 1994, Lucy Freeman threw all her energy into working with her son and helping develop the support group known then as the Danbury Alliance For The Mentally Ill (DAMI).

She remembers meeting another mother whose son had similar difficulties and with whom she became friends. Judy Chichester became a big help in the development of DAMI and later took over as president when Lucy Freeman first retired from the position. Mrs Chicester has also retired from the presidency, and Mrs Freeman is once again taking over.

During Mrs Freeman’s first tenure at DAMI, her time was spent attending meetings, serving on committees, and traveling to Hartford to speak to the legislature to fight for budget money to be allocated to treat mental illness.

 “There was very little money or organized help for the mentally ill or their families. It was piecemeal. And there were so many splinter organizations,” Mr Freeman recalled.

These problems persist today, he said, though the picture is more hopeful than it was.

In January 2004, Lucy and Joe Freeman once again took up the role of dedicated volunteers and co-presidents for the National Alliance for the Mentally Ill of Danbury (NAMI), as it is now called.

Mr Freeman does not hesitate to point out that his wife is the true leader in their joint endeavor.

“People in need used to call Lucy all the time,” he said, “and I expect they will once again as she takes over the reins.”

NAMI of Danbury holds meetings and arranges speakers twice a month at the group’s gathering place, known as Almost Family, located at 52 Federal Road in Danbury. They put out a newsletter, and keep track of ongoing legislative bills and initiatives concerning programs to benefit the mentally ill.

“It’s needed. We’re like the older folks who have already been through it. We need to be involved because we know how to handle things,” Mr Freeman said.

“There’s no easy fix. Getting the right treatment and the right medication is trial and error. We try to understand and to help. It’s important to emphasize that mental illness can have three causes: it’s genetic, it’s the result of a virus working on the brain, or it’s we-don’t-know-what.

“They can see the evidence of schizophrenia in the CAT scans because the ventricles of the brain are enlarged. But they may not know what caused it. Mental illness just happens and it can happen to anyone. It’s like the scarlet letter. There’s still a stigma associated with it, and we’re trying to fight that all the time,” he added.

Mr Freeman noted it is a huge relief to families when there is someplace they can go to share with others what has happened to them.

“It’s like, Thank God you know what I’m talking about!”

Lucy Freeman is truly NAMI’s sympathetic listening ear. She wants people to know she is available any time to talk with families needing help.

“All they need to do is pick up the phone and dial my number, 426-0051.”

Besides offering emotional support, education and advocacy, NAMI sponsors a Family-To-Family Education Program that includes a free, 12-week course for families of individuals with severe brain disorders (mental illnesses). The curriculum focuses on schizophrenia, bipolar disorder (manic depression), clinical depression, panic disorder and obsessive-compulsive disorder (OCD). The course discusses the clinical treatment of these illnesses and teaches the knowledge and skills that family members need to cope more effectively. The national NAMI website is www.nami.org.

NAMI of Danbury, which is funded privately, may be reached at 426-0051, and there is a 24-hour Crisis Hotline at 888-447-3339.