Waterville woman reflects on living with HIV virus; organizes AIDS walk in Hallowell
WATERVILLE -- Nancy Russell has decided that after 20 years of keeping her virus a secret, it's time to come out in the open.
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Nancy Russell, diagnosed with HIV 20 years ago, is organizing the Central Maine AIDS Walk happening Saturday in Hallowell. She is special-events coordinator for the Horizon Program based in Augusta.
Staff photo by Michael G. Seamans
Russell, 67, has HIV.
She doesn't look, act or feel sick, but for 20 years she has been treated for HIV and has kept it under wraps from everyone but her closest friends.
Even her neighbors do not know she has it.
"Mine came from a one-time sexual encounter with a man, a neighbor, I had gone out with a few times," Russell said Wednesday.
That was when she was 47 and living in Miami. Now, at nearly 68, she says, she's ready to help educate others about HIV. And if it prompts even one person to get tested for the virus, it will have been worth it.
"It's not an automatic death sentence," she said. "There is no cure, but it's very treatable."
Russell is a patient advocate and special events coordinator for MaineGeneral Health's Horizon Program, an Augusta-based agency that provides medical and social services to people with HIV/AIDS in central and mid-coast Maine.
She recalls a young married couple with HIV coming into the clinic with their child, apprehensive and fearful. Russell told them she has had HIV 20 years.
"They said, 'Wow, you can live that long?'"
Their attitudes changed and she watched the fear melt away, she said. She knew she had something to offer people by being open about her own disease.
"I really think there's still so much stigma to the disease," she said. "It's so important to educate people that you have to be aware -- you do have to protect yourself -- but if you do get HIV, hopefully you can get the right doctor. You can carry on your life."
Russell is helping to coordinate the Central Maine AIDS Walk Saturday in Hallowell. The event, now in its second year, drew 65 walkers last year and benefits the Horizon and HealthReach programs.
The Horizon Program, supported mostly through grants, does outreach education, with officials going to jails to test people for HIV, and speaking to students in schools. The program offers dental care, which is not covered by MaineCare. Case managers also connect clients to needed services.
Walkers for Saturday's event may solicit donations using a pledge sheet; people may also just donate to The Horizon Program or HealthReach Harm Reduction Program. Walkers raised about $3,500 last year, according to Russell.
A native of Long Island, N.Y., Russell lived most of her life in Florida and moved to Waterville six years ago to be closer to her brother, she said.
She was a secretary in Florida for many years, retiring at 62. After being diagnosed with HIV, she was extremely ill and told a friend she did not think she would be alive in another year.
But she had a wonderful doctor, as well as supportive friends, which helped her to survive.
At the time, HIV disease was considered a gay man's disease; she would go to doctor appointments and be the only female in the waiting room, she said.
She did not get involved in HIV/AIDS-related events while living in Florida, but when she came to Maine and found The Horizon Program, she felt compelled to help others, she said.
"I have a terrific doctor, Mark Rolfe, and the caring, compassionate office staff at the Horizon Program," she said.
She gardens, loves to spend time with friends and shop for antiques, and takes the time to help other people. She acknowledges that before she became ill, she was somewhat of a snob.
"I think I am a much nicer person now. I think the bottom line is, do whatever you can to give back. You've got to help others who don't have what you do."
Once in Maine, Russell got involved in the Central Maine Client Advisory Committee and is a member of Women of Maine Battling AIDS Together Successfully. She also volunteers at the community group, REM, in Waterville and is a member of a local Red Hat Society.
She recently got up the courage to tell her friends in the Red Hat group that she has HIV. The response was overwhelmingly warm, she said.
Not being truthful with them was exhausting, she said.
Rolfe, Russell's doctor, is medical director at The Horizon Program, which serves about 200 clients who range in age from 20 to into the 80s.
About 1,000 people in Maine have HIV, he said. Medications for HIV have become much better and cause fewer side effects, according to Rolfe.
"It's still a worldwide epidemic," he said. "In the U.S., we see about 50,000 new cases a year."
The ratio of men to women who have HIV is about 60 to 40, he said. It is important that anyone who has been sexually active be tested; testing is very simple and involves putting a swab in the mouth for about 20 seconds, according to Rolfe.
"The worst cases are times when people know they're getting sick and they don't know why and don't want to get tested and they end up in intensive care, really sick," he said. "A lot of people don't get tested because they think it's a death sentence."
One does not contract HIV from toilet seats, or from hugging someone or a kiss on the cheek; one gets it through sexual transmission or sharing of needles, he said.
He recommends the website TheBody.com for HIV/AIDS patients, their families and health-care professionals.
Rolfe praised Russell as one who is often the first person to arrive at the clinic and the last to leave, spending time with clients.
"She's a good listener," he said. "Nancy is always, always very positive, saying 'You can get through this. I know where you are. I was there. Your life is going to get better.'"
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