A little girl;s dream helps Natives
CANASTOTA, N.Y. - Imagine having symptoms, but not knowing the real problem. Imagine going misdiagnosed time and time again, and having to face a disease in an advanced stage. Native Youth Alliance's Heritage of Healing Project hopes to prevent this from happening again.
It all started with Alethea Mae, Little Miss NYA and daughter of NYA Project Coordinator Shoshana Beth Phillips.
''She started Jingle Dress dancing really young, because she had a really good understanding of Jingle Dress and she understood that it was a time to pray for people and she wanted to do that.
''And she had a dream. A vision came to her one night. She talked to us about having a place for the people to come together in a big prayer ceremony for all those who were ill, all those who were ailing, all those who were in a bad way. And so, in trying to support her in these traditional ways and get an understanding, we take these things and we try to act on them. We try to make them a reality.''
NYA had a few false starts along the way. After Phillips was diagnosed with multiple myeloma, a cancer of the plasma cells in bone marrow, and a national report was issued stating that cancer deaths were down in all segments of the population except among American Indians (which went up), the focus of Heritage of Healing shifted to cancer.
NYA attempted to start again.
''But it got a little out of sorts and it got a little out of order,'' Phillips said. ''One of the focuses of the project being cancer education and awareness is to try to go places where people are and get out information. We started doing that before we could put down the spiritual foundation - before we actually had a ceremony to give it spiritual foundation. And so that was kind of a second false start.
''We went to Washington, D.C., because we want it to be kind of a national project. We want to develop a national model. We went to Arlington [National] Cemetery. There's a tree there - a cottonwood tree - that was planted some years ago by the American Indian Society. We had a Pipe ceremony there and said our prayers and laid the foundation that way - laid the spiritual foundation that way.''
Since January, Heritage of Healing has traveled to half a dozen places, setting up a booth to get information to people. They provide brochures and handouts, and Phillips is in the process of doing her own research to educate herself in being able to be more helpful.
''I've kind of been draft-tagged as the cancer expert for Native Youth Alliance. ... Sometimes, I kind of see myself as somebody's first contact, so I want to be able to provide as good of information as possible.
''One thing we try to tell people is that they can live healthy lifestyles in order to help prevent developmental cancers. But then because Native people have been at greater risk in the last 50 or 60 years from radiation and from other environmental causes of cancers, we're trying to let people know, 'These are early warning signs to watch for. These are things you need to ask to be tested for.'
''I knew I was having symptoms of things, but I had no idea what it was a symptom of. I didn't know to ask to be tested, so I then allowed myself to be misdiagnosed, and undiagnosed for five years. ... Because it went undiagnosed for so long, it's so much more difficult to treat, and so much more difficult to fight. ... What we hope is that we can help other people be diagnosed in a more timely manner so that maybe other people will have better luck and have more time.''
Heritage of Healing is seeking assistance of any kind, specifically financial. Due to Phillips' illness, NYA missed filing paperwork and lost its 501(c)3 status. While she's in the process of re-filing, any contributions would be heartily accepted to ensure future plans.
''We hope to be able to expand to more services for families going through cancers, like support services. One of the big needs is places for people to stay while they're going through treatment. Because a lot of times people have to go to a big hospital in a big city ... It's one of those things we'd like to be able to provide people, a network of homes,'' Phillips said.
Heritage of Healing also needs help starting a Web site to be able to reach a wider audience. People who can help with grant writing and volunteer where needed are also a plus.
NYA will hold the Presidential Inaugural Pow Wow in the Washington, D.C., area Jan. 19, 2009, the night before the new president is inaugurated.
''We're going to have a special Heritage of Healing dance there,'' she added. ''And we're putting out an invitation to all people who are interested in participating and a special invitation to all Jingle Dress dancers because we're going to have a Jingle Dance there.''
With all of the planning that's gone into Heritage of Healing thus far, it all goes back to foundation.
''Everything's got to have a solid foundation before you can build on it. ... That's always been our philosophy.''
For more information, call (734) 323-0762 or e-mail email@example.com.