Shaleen is a soft-spoken 25-year-old woman living in Jersey City who has spent the last few weeks fighting with doctors to prevent her older brother from being released prematurely from Jersey City Medical Center.
Shaleen is scared: Scared that her brother, whose arm is about to be amputated, will end up on the street after the surgery because - she says - in addition to his physical issues, he has a related mental illness that includes wanting to eat his arm, and a drug problem, both of which she believes can't be addressed by the hospital in such a short time.
She is scared because her father walked away from the situation once he realized how sick her brother was, and she is scared because she and her husband, a 30-year-old teacher, have been battling to get her brother help nearly on their own.
If Shaleen's older brother had cancer or a lifelong physical disability, it might be easier for family members, friends, and medical professionals to understand what's going on. But Shaleen and her husband have found themselves without the proper resources, being forced to explain the entire story over and over to social workers, doctors, bosses, and anyone who might know how to help them.
Shaleen doesn't want her brother to be released until he is treated for all his issues. He has wound up on the street before.
Two weeks ago, Shaleen, a medical biller, and her husband finally came to the monthly meeting of the Hudson County affiliate of the National Alliance on Mental Illness.
NAMI is a non-profit group that provides support for those with a mental illness and those who love them - when it is sometimes hard to find others who can relate.
It was immediately apparent that the people gathered at the May 13 meeting in Jersey City were a caring and cohesive group. The tone was open, the feeling friendly, and no one who shared their problems felt judged.
Meets once a month
NAMI's Hudson County affiliate is made up both of "consumers," meaning those using mental health services, and the family members of those with a mental illness. The local affiliate of the national organization meets monthly and is open to anyone.
Mental illness affects one in five U.S. families. It can take the form of manic depression, paranoia, schizophrenia, or another brain disorder.
"Talking to people here helps me not to be lonely."
Martha Silva, who said her mother and son are both living with mental illness, has been president of NAMI-Hudson County since its inception 10 years ago.
"In 1998 I came to an Intensive Family Support Service meeting at Catholic Community Services," Silva said last week, explaining how she got involved. "NAMI NJ Executive Director Sylvia Axelrod told me that Hudson County did not have a [NAMI] group."
(The national organization has affiliates around the state and country, but Hudson County was lacking one until Silva came along.)
Silva, who lives in Guttenberg, also runs the statewide "NAMI in Espanol" group, which has monthly NAMI meetings for people speaking Spanish. For that group, she conducts separate meetings in Spanish in Hackensack, New Brunswick, Passaic, and Perth Amboy, and in Hudson County. The Hudson County meetings in Spanish are held in Union City on the first Wednesday of each month, and the ones in English are held on the second Tuesday of each month in Jersey City.
Clients and caregivers
When there is a guest speaker at the monthly NAMI-Hudson meeting in Jersey City, both the consumers of mental health services and family members meet together for the entire meeting. Otherwise, they start off by meeting together and then split into two different rooms for separate support groups.
"[We want] to bring hope, to make families feel that they are not alone in this world with this problem, and that there is somebody to listen and help," said Silva.
She added, "I'm trying to get more family members to be part of this program. I have clients who are very faithful. Even if it's snowing, they'll come here, but I can't get the families motivated."
What Silva really would like to do is get more volunteers for the "Family to Family" program, a program in which people are trained to counsel families of those with mental illness. Volunteers are trained for 12 weeks, then able to help others.
Currently, Family-to-Family is available only in Spanish in Hudson County.
Silva has several local members who are attending the training for families who speak Spanish, but says she wants more English speakers to get involved.
Aid and information
The consumers who were on hand for the last monthly meeting on May 13 spoke glowingly of the support system provided by NAMI.
"I've been coming for three years," said Barbara, who has a mental health issue.
She added, "I enjoy being with these people. It helps people who are discriminated against. I've never had that. There is no need for discrimination."
A man named Dan said the group helps "improve mental health services for the community."
Families find fellow travelers
Mary Gaughran from Union City started coming to NAMI meetings a year ago.
"My daughter is 15 and has a biochemical brain disorder," she explained last week. "I come to the support group so that I can speak to people who have been through the same ups and downs."
She added, "There have been suicides in my family, and no professional help, until recent years."
LaVerne Ben-Mansel from Jersey City said her daughter has bipolar disorder.
"Four months ago I saw an ad in the paper [about NAMI-Hudson] and called Martha," she said. She said her daughter, who is in a day treatment program, does not attend the meetings.
Another group member, Nelly, said it best. "I want to be healthy," she said, "and talking to people here helps me not to be lonely."
Both sides of the fence
Wayne Vivian, the NAMI vice president, is both a consumer of mental health services and an advocate who has been with the group since 1998. He said he suffers from major depression, panic disorder, and obsessive-compulsive disorder.
"I was impressed with the integrity of the organization," he said last week, "and people supporting their loved ones."
He noted that 60 percent of mental health consumers statewide live with family members.
"If the state had to care and house them," he said, "it couldn't afford to do it."
Vivian said that families are under almost as much pressure as clients.
"It's stressful when a loved one is diagnosed with a mental illness," he said. "The loss of control is difficult, and it's difficult to get the care that's needed and to keep the trust. The emotional involvement is also not easy."
Shaleen says it all
In May, Shaleen, the 25-year-old medical biller, was at a meeting for the first time. She came with her husband, Amir, a teacher.
She told her story, which epitomizes the travails of family members negotiating the roiling waters of the mental health system:
"My brother was abused as a child," she said. "He was mentally ill, on drugs, and living in Puerto Rico. His house was like a crack house filled with garbage. He sold everything to buy drugs, including the tiles on the walls. His arms looked like baked potatoes from shooting up drugs.
"My father, husband, and I finally went to get him and bring him back. He smelled, and his hair had grown. While one arm had healed, the other had gotten worse. It looked like it was attached only by skin, no bone, and it smelled like rotting flesh. We tried having him treated in Puerto Rico, but they treated him badly and didn't have the resources to deal with mental illness.
"We scrounged to bring him back to New Jersey. It's hard to get ID for a person who is basically homeless, but we were somehow able to get it. It's also hard to get Medicaid when you can't prove residency. We took him straight to a hospital in New Jersey and my father left for Virginia.
"The doctors told us that they would need to amputate his arm and get a prosthetic device. By this time, my brother had stopped taking drugs cold turkey, but he still had a mental illness and it was hard for him to understand what we were telling him.
"The plan was for him to go to Virginia with my father for rehab after the surgery, but my father didn't want anything to do with him. Because of his arm, my brother needed help showering, but he had molested my sister and me when we were young - he was a sexual predator in the home. I felt uncomfortable helping him shower, so my husband did it.
"But one of the reasons I am telling my story is so that other women who have been sexually molested can see that I have truly forgiven my brother.
"We gave my brother everything. We gave him clothes, and he wanted cigarettes, but it was very hard without financial help from my father. And my brother still had his mind set on the drug life.
"He got so upset because we would not give him all the cigarettes he wanted that he left before the surgery. He was gone for a week and then my husband found him sleeping under the car. We took him straight to the hospital to reschedule the amputation. He said he wanted to eat his arm.
"The psychiatric ward at Jersey City Medical Center said they would keep him until the surgery and then discharge him. My brother didn't want to change his bandages. He was noncompliant, and I had no idea what to do. I didn't want him in the house, and I didn't want him in the street."
Shaleen found the state chapter of NAMI online and got information on the local affiliate.
"I needed a support group," she said.
When she came to the meeting in Jersey City on May 13, she told her story. She said she was worried the hospital would release her brother without giving him enough mental help so that he would improve.
After she spoke, the other members of the group gave her advice on what to do. Some of them told similar stories of having dealt with mentally ill relatives in the hospital.
"The people here were kind," Shaleen said afterward. "They stayed late and listened to my story. Just listening was helpful, and Martha spoke to one of the social workers, and contacted me to see if I was OK."
Silva commented on Shaleen's situation.
"As in this story, many times there are problems that families face that they don't understand," she said. "By coming to a meeting, we can guide them and advocate for them and help them through the system."
One NAMI member later added after the May 13 meeting, "Shaleen told us that she'd gotten more help and information from coming to our group than from anyone else she'd talked to."
The regular monthly NAMI-Hudson meetings are held the second Tuesday of every month in Jersey City. In addition, the monthly "NAMI in Espanol" meetings are held the first Wednesday of every month in Union City. For more details, e-mail email@example.com or call Martha at (201) 861-0614.
For comments on this story, e-mail firstname.lastname@example.org.
NAMI offers a number of programs designed to help consumers and families deal with mental health issues.
Hearts and Minds is a multimedia program about healthy, accessible, and affordable lifestyle changes to reduce cardiac risk among people with mental illness.
In Our Own Voice is a 90-minute interactive, multimedia presentation by consumers that offers hope and provides insight into the recovery now possible for people with mental illness.
NAMI Basics is a new NAMI national education program for parents and other caregivers of children and adolescents living with mental illness. The six-session course is taught by trained professionals who are also parents and caregivers of people who developed symptoms of mental illness in childhood.
Educating the Educators is an initiative developed by NAMI NJ to inform K-12 educators about mental illness and present practical tools to help motivate children with social and emotional disorders.
Provider Education is a program for mental health service providers co-taught by consumers, professionals, and family members.
Family to Family is a free, 12-week course for family caregivers of people with severe mental illnesses that addresses the clinical treatment of these illnesses and teaches the skills family members need to cope more effectively.