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New England Grassroots Group Helps Women to Deal with Disease - 2003-06-28


Struggling with the physical impact of a chronic or life-threatening illness can be hard enough. But coping with the other effects of illness, from diminished capacities and loss of income to a future filled with new uncertainties, is a tough emotional and psychological challenge as well.

In recent years, several community organizations have formed to help people cope with these sorts of challenges. One grassroots group in the New England town of Provincetown, Massachusetts, that devotes itself entirely to helping women.

Down a gravelly side street and up a rickety wooden staircase perhaps 75 meters from Provincetown Harbor, you will find the one-room headquarters of Helping Our Women, 'HOW' for short. And, just as she has almost every weekday for eight years, executive director Irene Rabinowitz is at her desk in that office, hoping to help someone over the phone.

Ms. Rabinowitz is proud that HOW raises almost its entire $197,000 budget from private contributions. That's not much money compared with what many social service agencies can spend each year. Still, the money HOW raises goes a long way to serving its client list of 163 local women.

"We have two weekly support groups, one specifically for women with cancer and one for all women with any kind of chronic illness," she said. "We do financial assistance to low-income women who are dealing with illness. And we do a transportation program where people receive rides to medical appointments. We also do a lot of traditional case management, helping people with social security applications, food stamps forms, helping them get their way through what is a very convoluted [health care] system."

The women on HOW's client list suffer from a wide variety of ailments including muscular dystrophy, AIDS, cancer and severe depression. Ms. Rabinowitz says that HOW's goal for all its clients is to help them regain some control over their lives.

"When somebody becomes ill, they lose control of so many things the ability to make a living, and sometimes, the ability to even take care of their basic physical needs. That's what we do," she said. "We don't put conditions on it. We are not here to fix people. We are here to help them cope with something that has impacted their lives, quite often very greatly."

HOW also helps women build up self-confidence, which can suffer a severe blow from the weakness or disability that illness can bring. Many are daunted by the complex healthcare bureaucracy they must face, or are unsure how to fill out the complex forms necessary to qualify for state housing assistance, for example.

HOW administrator Terri Nezbeth says that showing women how to fight to protect their interests is one of her job's chief pleasures.

"Because I get to help women who don't know that they can do the things they can do," she said. "And when I am able to help them take them to a doctor's office, fill out an application for housing, and they get the house, they are so ecstatic. It just lights me up inside just seeing how happy they are and then they realize they can do this!"

HOW's cancer support group has been a boon to Fayette Watkis. When Ms. Watkis was diagnosed with breast cancer five years ago, she felt confused by the seemingly contradictory advice her doctor gave her.

"I was one of those who was raised to believe that the doctor was God and you don't question anything they said," she said. "And I ended up actually firing my doctor because of the support I was getting through HOW, and move on to a much better doctor who listened to me and didn't tell me that I was just an over-worrier."

Sometimes, clients in a support group choose to test their physical abilities together. For example, HOW recently sponsored a daylong retreat to a nearby lighthouse. Last spring, several women in the cancer support group took a lesson in open-sea kayaking. These sorts of activities remind women that their diagnoses do not define them, and that fun can be healthful. But for Susan Mitchell, a two-year breast cancer survivor, the most wonderful thing about the support group is the sense of genuine community she finds there.

"I think a lot of it is we're 'there' for each other. We're good listeners," she said. "That's really what most people need."

Irene Rabinowitz often receives queries from people who want to start a similar community group of their own. To begin, she says, simply find a likeminded set of friends and meet regularly, get to know each other, and discover shared goals and available resources.

"Even if it's a village square sitting on benches, or a local religious establishment, where you can meet and talk about these issues. And it grows. I mean this grew from just a bunch of women sitting around talking," she said.

Ms. Rabinowitz acknowledges that finding a 'safe space' has been easier in ultra-liberal Provincetown that it might be in many parts of the world.

"And I know there are cultural barriers around shame and illness, something that is sexually transmitted and who is at fault," she said. "But you have to let go of that, and say there is no fault! You're dealing with someone who is dealing with an illness at this point and they need assistance, and to do it unconditionally. Just open your heart. Just deal with the issues and they come to you, and listen. And that's how you learn!"

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