A Karen refugee uses her experience to help others

Story and photo by Emily McMinn

With phones ringing and people coming and going, the Asian Community and Cultural Center was a bee hive of activity on a recent day.

The center, located in in a building just off O Street in the Hartley neighborhood, is a busy place because it offers a variety of services and programming – from citizenship classes to exercise sessions – for the city’s refugees and immigrants.

Among the most in-demand staff members at the center are the community advocates like Lanetta-Edison Soe, whose job is to help Karen refugees navigate the often complicated and unfamiliar U.S. health care system.

And she’s the perfect guide. She’s a Karen refugee who has experienced her own serious medical problem.

Soe understands the challenges of navigating both a new country and healthcare system.

“When I was sick, interpreters helped me understand the healthcare system and I used community resources available to me,” she said. “I want to help other people in my situation.”

Soe, who has a master’s degree in social work, helps a women’s group and a senior’s group learn about health issues, including medications and nutrition. One of the main parts of Soe’s work as a community advocate is translating and interpreting for the Karen, who started resettling in Lincoln in 2007.

“I take them to their doctor appointments because most of my patients don’t speak English,” she said. “I help both the doctor and the patient understand each other with cultural and language differences.”

Even though the community advocates may do a variety of tasks every day, their work is vitally important to the people they serve, said Lihn Bui, another community advocate at the center. The community advocates have one common goal — helping others.

Soe agreed.

“The most important part of my job is to give people a voice,” she said. “Most of my clients are afraid to speak up. I am an advocate to understand what they are dealing with and help them get the resources that they need.”

This story is part of a series about the people and issues in Lincoln’s six most diverse and economically challenged neighborhoods.  Graphic by Tyler Loebig.

Empathy also is a vital part of being a community advocate, Soe said, noting that her background helps her understand and relate to those she’s trying to help.

Like many of the 4,000 Karen living in Lincoln, Soe and her family fled the civil unrest in Burma in the 1980s and were displaced in refugee camps in Thailand. Soe fled when she was 6 years old with her brother, sister and parents to the Noe Poh refugee camp in northern Thailand in 1990. She lived there for 17 years.

“The camp was like a prison with school,” she said. “We were fenced in and could not leave. Our home had a roof made out of leaves; the conditions were challenging.”

Without a car or any other form of transportation, Soe’s family walked everywhere. Over time, the walks became more strenuous for her and she struggled. So her dad took her to the health clinic in the camp.

“We knew something was wrong,” she said. “We didn’t really know what caused it, but my dad tried to give me herbal and traditional medication, and it didn’t help.”

In 2004, the clinic in the refugee camp ran blood tests and discovered the 20-year-old Soe had a very low platelet count. After a trip to a hospital in Chiang Mai city and additional tests, she was diagnosed with aplastic anemia. That condition occurs when the body stops producing enough new blood cells, according to the Mayo Clinic. Aplastic anemia causes fatigued and with a higher risk of infections and uncontrolled bleeding. Treatment options include blood transfusions, bone marrow transplants and the use of antibiotics.

Two years later, in 2006, Soe was allowed to travel to the United States to receive a bone marrow transplant because her situation was classified as a medical emergency. She packed up her traditional clothes, Bible and her dictionary and started her journey to the United States with her siblings.

“At first, I was happy,” she said. “I was going to America to get treatment. On the other hand, I was sad. I had to leave my parents in Thailand. I had so many different emotions.”

Although Soe and her siblings received an orientation about the United States, nothing could have prepared her for New York City.

“It is like you are lost in a big city,” she said. “I don’t remember life outside of the camp. All of the tall buildings and cars moving around were confusing. I felt small, helpless and afraid.”

Soe resettled to Utica, New York, with members of her extended family who had resettled there. After three months in the United States, she received a bone marrow transplant at the Rochester Memorial Hospital.

Soe’s brother donated bone marrow, and the procedure was completed three separate times before it was successful. Soe also received chemotherapy and medication.

While Soe was finishing treatment, she started attending community college and earned her associate’s degree in human services and worked as a teacher’s assistant while learning English. She went on to earn her graduate degree in social work from Keuka College in upstate New York.

She met her future husband, who later relocated to Lincoln for work before she graduated. In 2017, after finishing her graduate program, Soe also moved to Lincoln to join him.

A cousin who knew about the Asian Community and Cultural Center recommended Soe because they were seeking people to work with the Karen ethnic group.

Rebecca Reinhardt, a cultural program coordinator at the center, praised Soe for her creative ideas. She described Soe as passionate and able to connect with community members by being a good role model and quickly integrating into Lincoln’s Karen community.

Soe said she gets inspiration from her father, who died before she came to the United States.

“My dad was a community leader,” she said. “I grew up watching him help everybody in our community. I want to be like my dad, and I love to help people.”

Soe’s goal is to get a license in counseling therapy because Lincoln doesn’t have a Karen therapist.

“I want to tell people that they are not alone,” she said. “Don’t give up because you are afraid. I want to empower the members of the Karen community.”

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