Regina White Wolf: One woman's personal journey with diabetes


ANADARKO, Okla. - Personal journeys are chosen for you sometimes, says Regina White Wolf, Blackfeet and a Wichita Native, psychologist, volunteer counselor and diabetic.

"You're chosen, sometimes not really realizing why you've been picked. My journey was chosen for me."

In this case, the journey is her diabetes. First diagnosed in September of 1998, White Wolf had had gestational diabetes during pregnancy and was one of the 40 percent of Native American women who develop Type 2 diabetes later in life.

The fact White Wolf was a practicing psychologist and had previous experience with the disease did not make the diagnosis easier. Deeply upset by both the news and the "non-compassionate" way she was treated by Indian Health Service, White Wolf drove home from the clinic in a state of shock, yet determined to take control of her situation.

"I got online and somehow I hit on the Native American diabetes project. And, in my heart, I said, 'there is hope. There is hope because I can connect to this. It touches my soul.'"

Within days of reading about the Awakening the Spirit program, White Wolf found out that representatives of the American Diabetes Association were coming to southwest Oklahoma for a pilot project. She was chosen to be a member of one of the teams, learning to be a trainer.

Within a month of her initial diagnosis, her life had completely altered course.

It is people like White Wolf who have been drawn to the Awakening the Spirit program - people with compassion and understanding, people with the skills and knowledge that can make a difference in other people's lives. Most importantly they are Native people with personal experience of diabetes.

Despite being a counselor and trainer, it is still difficult for White Wolf to be seen as a diabetic. It was not easy for her to be interviewed, knowing her most private fears and thoughts would be exposed to the world. And yet easy is not what she has determined her life to be about.

With chagrin and amusement, she recalls another embarrassing time when she volunteered to work on an ADA diabetes video. As a small token of thanks, she was given a free subscription to the magazine Diabetes Forecast.

"I went to the (postal) box office and, wouldn't you know, I thought, 'Oh no, the people here at the post office are going to know I have diabetes.' And I started laughing and I thought, 'Now this is the mentality that has to be overcome.'"

As difficult as being public about the disease is, White Wolf knows the silence of generations has to be broken if any sort of healing and progress is to occur within herself and within the Native American community. She remembers her father had diabetes and never talked about it. So she coaches the people who come to her to remember all the people, the family members, the friends who suffered with diabetes but who never talked about it, and the crippling effect that had on everyone's lives.

"Nobody ever shared in our family about it or about what could be expected or how it could be prevented," she says. "It was just part of our community to see people with diabetes who were amputees, et cetera. And nobody ever stopped and said, 'Wait, let's change what's happening to our people.'

"People in my age group, in their 40s, are the ones that have to say, 'Whoa. Stop. We've got to start talking about it. It cannot be a shame issue for us, but a thing to start changing. We have to find the positive in diabetes for ourselves, and then we can start making changes in our communities."

The very fact people like White Wolf are taking a stand to make the necessary changes within themselves to face and control diabetes is a positive thing. White Wolf points out that by learning to control her own eating habits and physical lifestyle, she has become closer to her Indigenous heritage - one where healthy eating, physical activity and self-knowledge and control were taken for granted. And, she says that for Indian women, diabetes can often be a journey that teaches them to care for themselves and develop greater self-esteem.

"By caring for yourself, you're caring for your children and your grandchildren and you're doing it for your people, not just you. And so that's where people will make better choices - when it's not just them they're doing it for, but for other people."

Of all the aspects of diabetes, White Wolf admits the hardest thing to watch is the people who have the disease but don't deal with it - people who wait 10 or 15 years and come in for treatment only when complications start, limbs are amputated or blindness or heart disease has set in.

"I tell people that every day there's a choice. ... Instead of cursing the darkness you light a candle. And to me, lighting your candle is awareness. You strive for the balance - emotional balance, physical balance, spiritual balance. And for us as a people, cultural balance. As a people, we have a choice to strive for all of that every day."

The shame and isolation many Natives with the disease feel and create for themselves, is changing.

Based in the community, run by Native volunteers using traditional methods, Awakening the Spirit addresses the whole person, mind, body and spirit within the context of community.

It provides an environment that Native Americans can draw strength from because it utilizes their traditions and recognizes and addresses their unique problems. In Awakening the Spirit, the old medical paradigm of just treating the disease physically, is gone.

"The primary fight against Type 2 diabetes among our people does not necessarily require insulin injections or modern technology," said Lillian Tom-Orme, a Navajo nurse and co-chairwoman of Awakening the Spirit. "In fact, we as Native people, known for our survival skills, can once again delve into our ancient, yet reliable, techniques of strengthening our spirits and re-equip ourselves with cultural knowledge and skills."

Awakening the Spirit started in 1997 when ADA representatives realized mainstream approaches weren't assisting those hardest hit by the disease.

The Native American program is based upon a diabetes outreach program developed in the early 1990s at the University of New Mexico. The community-oriented curriculum researched with the Pueblo tribes in New Mexico, has four "how-to" modules: how to eat less fat, how to eat less food, how to increase activity, and how to continue positive changes. All are taught in a support group environment.

As opposed to earlier programs, this curriculum turned out to be popular with tribal community members because it teaches them how to control and live with diabetes without involving health professionals. Instead, it invites concerned Natives from any tribal community to come and learn how to teach the modules as a volunteer. As a group, they learn how to teach the program and how to tailor it to cultural needs of their particular tribe.

"There's a lot of laughter, there's a lot of fun and a lot of tears, but there's a lot of connection taking place," White Wolf says.