Winning the war

loading...

If the name of her organization puts people off, then so be it, said Susan Joyce, who founded Bangor’s Women’s Activity and Recreation Against Isolation, a group for people with a history of mental illness.

Although some have looked askance at the acronymn WAR, Joyce sees it as inherently fitting.

“The fact is, we are waging a war against isolation and a war against prejudice for acceptance,” she said recently. “And it’s a real battle to get where you need to be. But in the process of waging the war, you become empowered and you get a sense of self.”

The nonprofit group, which celebrated its second anniversary last month, provides companionship through social and recreational activities, and teaches leadership skills by having the women organize events and fund-raisers.

Another goal is to improve the public image of people with mental illness by encouraging members to be active in the community.

In addition to holding bimonthly meetings at the Bangor-Brewer YWCA and publishing a newsletter, members have visited Leonard’s Mills Living History Museum in Bradley and Duck Cove in Southwest Harbor, a retreat facility for women’s groups; participated in camping and canoe trips, and potluck suppers; and attended movies, yoga sessions and adult education classes.

Members have addressed other women’s groups and participated in Consumer Advisory Board meetings in Augusta. Last month they manned a booth at the H.O.P.E. Festival for nonprofit groups and organized a workshop for recreational therapists as part of the annual parks and recreation conference.

Joyce, who last fall received the Maine Women’s Fund Award for creating WAR, initially envisioned the group as providing “an opportunity to get people together and share fun experiences.”

Since then, participants have become a close-knit circle of friends who also support one another during the bad times, she said.

Joyce, 45, who has been living with bipolar disease for 18 years, knows about bad times. She was first hospitalized with manic-depressive disorder at the age of 28 after she had just given birth to her only son, David.

For the next 11 years, life remained on an even keel. Joyce graduated with a public accounting degree from Husson College in Bangor and began working as a municipal auditor for the state. She passed the certified public accountants exam and was looking for work when her lithium stopped working.

“I started getting delusions of grandeur. I couldn’t sleep,” she recalled. During the next 2 1/2 years, until doctors found the correct medication, Joyce was admitted several times to Acadia Hospital and Eastern Maine Medical Center. Once discharged, she missed the hospital’s support system.

“It’s pretty hard for people to understand what your body and mind are going through,” she said. “Nobody but the women I was with could understand.”

Although she began to recover in 1993, “I was depleted, I had lost my confidence.” Her husband “was worn out, too,” and the couple divorced in 1995.

As a volunteer at Community Connections, an agency that helps the mentally ill become independent through recreation, Joyce realized that those with mental illness were “connected with services but not with people.” Although they were handed tickets to various events, people told her, “I’m afraid to do this on my own,” Joyce said. She also saw the need for women with mental illness to learn to take charge.

“Nobody from the outside can understand how diminished you feel with a mental illness,” Joyce said. “It’s not easy to learn to do things for yourself, to pick up the phone, plan a trip, pack a trunk, decide where to go, what to bring, who will drive, where we eat — it all takes energy that can be lacking in people with mental illness.

“When people decide what they want to do and how to do it, it boosts their self-esteem,” she said. “They’ve made the decision for themselves. Nobody is smarter than they are.”

Joyce was an easy pick for the Maine Women’s Fund Award, according to executive director Karin Anderson. The honor is given annually to women who have made outstanding contributions to other women and girls in the community.

“We were impressed with the work she’s done with women who are trying to reintegrate into a normal life,” Anderson said. “It has just made a world of difference for a number of women by allowing them to move beyond the label of a woman with a mental illness or a disability to being a woman fully participating in her community again.”

Last month, several members remained at the YWCA’s Farrar Mansion long after their meeting had ended to explain how WAR has changed their lives. The room was filled with laughter as they reminisced about their excursions and marveled about how far they had come.

With other recreational groups, “the traditional small talk made me feel different and uncomfortable,” said “Elvis,” who is dealing with seasonal affective disorder. She got her nickname when she wore a T-shirt emblazoned with the singer’s name.

“The first thing people ask is, `What do you do?”‘ she said. “If you have a mental illness and you haven’t been working, there’s a big blank spot. People don’t believe there’s anything more to talk about. That’s what they relate to, and it’s hard to get past that. But here was a place where I didn’t have to explain myself.”

For Cindy Emerson, an agoraphobic who had been housebound for seven years before joining WAR, the group provided “the confidence, motivation and reason to get out.”

“I always was a follower,” said Emerson, who helped run the workshop at the parks and recreation conference, “but WAR helped me become a leader.”

WAR allows the women to put their illnesses aside for a while.

“So much of our lives has been centered around the service system, and you fight being seen as your illness,” said Blair Blaine, who is coping with depression and panic, and eating disorders. “Everyone looks at the things that are wrong with you without seeing the strengths.

“But this group lets us do what everyone else does,” Blaine said. “It’s about having a life and getting us out into community, helping us realize we’re like everyone else — we’re people first and we like to have fun.”

The women were reminded about their favorite WAR events.

Blaine, who uses a wheelchair, recalled the group’s visit to Leonard’s Mills in which she rode in a horse-drawn carriage and traversed the pond in a canoe.

“Everyone helped lift me, they pushed me and pulled me,” she said, laughing. “It was so cool. I had always wanted to go to Leonard’s Mills, but I never could have done it on my own.”

A sledding excursion at Union Street last winter made Elvis smile.

“Some were comfortable sledding, others were frightened,” she said. “But this group worked together, whatever anyone’s level. I’ve never seen such gentleness and acceptance of another person’s differences and needs.”

The group complements other kinds of help, according to Joyce, who has received referrals from counselors at Community Connections, Acadia Hospital, Community Health and Counseling, and Northeast Occupational Exchange, as well as from individual therapists.

“We give women an opportunity to test the interpersonal and self-worth development skills they learned in therapy,” she said. “A therapist can say, `You’re OK, you can go out and do [an activity],’ but if there’s no place to do it, where’s the carry-over and where’s the support?”

According to Zahira DuVall of the Portland Coalition, a group for people with mental illness, WAR is one-of-a-kind. Although both agencies offer recreational activities and operate under the premise that people with mental illnesses are uniquely qualified to provide their own services, the coalition differs in that it includes men and has been involved in political lobbying and department of mental health initiatives. Accepting only women enables WAR members to communicate more easily and to feel safer, according to Joyce. Eighty percent to 90 percent of women diagnosed with a mental illness have been physically or sexually abused, she said.

The state Department of Mental Health, Mental Retardation and Substance Abuse Services believes WAR surely will continue to achieve great things.

“An organization that is truly grass-roots and community-based can do far more to help the cause of individuals with mental illness than anything else,” said Katie Fullam Harris, assistant to Commissioner Melodie Peet.

But WAR has struggled to gain financial support. The organization, which has operated on close to $10,000 through grants from the department of mental health and individual donations, is down to its last $400. Members are looking to apply for department and community starter grants, hoping to obtain funds for a paid administrator.

Meanwhile, Acadia Hospital donated a computer to the organization, and offered to help publish the newsletter and write grants.

For Joyce, the group has been part of the healing process.

“It’s made me feel better about who I am,” she said. “Somehow when you don’t have a sense of value yourself, recognizing that other women have value despite their illnesses gives you the sense that you’re OK, too. It lets you see that women with mental illness are pretty wonderful.”

Meanwhile, WAR continues to fight the aloneness which paralyzes many people with mental illnesses. Joyce is resigned to the fact that it can be a losing battle.

“We have people sent to our group that don’t quite make it,” she said. “They fall through the cracks — even we can’t reach them. They don’t come back because it’s too frightening or because it seems too confusing.”

She recalled one woman with a panic disorder who isn’t always able to make it through a whole meeting.

“Sometimes, though, just getting there is good enough,” Joyce said.