Helping AIDS patients cope is as crucial as cure

Even as 3,500 elite AIDS researchers met in Seattle to share battle plans in the crusade against the virus, someone in Snohomish County needed groceries. Someone needed a ride. Someone needed a friend.

Even as potent drug combinations have brightened the prognosis for those with AIDS, promising longer lives, day-to-day needs remain.

AIDS volunteers Volunteers in Catholic Community Services’ Helpers for People With AIDS program assist AIDS patients with transportation, food, household chores and support. For information about volunteering in Snohomish County, call Jim Thompson or Teresa Lokken at 425-257-2111.

"We went through a period, in the early days, when people were far sicker," said Teresa Lokken, who oversees HIV/AIDS programs for Catholic Community Services in Snohomish County. "When the medications came out, our clients were getting a lot healthier. The need became less, but it didn’t go away."

Now, she said, "we’re starting to see it pick up again, because of the side effects of the meds."

Lokken is no scientist. She’s no expert on gene mutations or drug resistance. Nevertheless, she’s on the front lines against HIV/AIDS, which, according to the Centers for Disease Control and Prevention, affect as many as 950,000 Americans.

Before joining the Catholic Community Services staff, Lokken volunteered with the organization’s Helpers for People with AIDS. She waged war on AIDS by being a buddy.

Lokken volunteered because of the stigma associated with the disease. "I saw a lot of injustices. If I tried to argue that people shouldn’t feel that way, I needed to be involved myself," she said.

She was matched as a "one-on-one buddy" with an Edmonds woman then just diagnosed with full-blown AIDS. The woman died in 1998.

In her 60s, the woman had told no one about her disease, contracted through a blood transfusion. To Lokken, "it doesn’t matter" how someone gets AIDS. "They’re all people, dealing with the same disease."

The corps of 40-some Helpers volunteers do everything from delivering food and offering rides to just being with someone.

"The buddy system can be a lot of different things. Some people want a phone buddy because of the isolation. Some just want to get out of the house to go to a movie," said Lokken, who is 50.

Being the Edmonds woman’s buddy for two years meant far more than that to Lokken. The friendship gave her an appreciation of life and compassion for those with AIDS.

"It was really important for me to be with her during her dying process," she said. "I was with her through the end. It taught me a lot."

Lokken administers Helpers, Catholic Community Services’ AIDS/HIV case management and housing for people with AIDS.

"They help with housing, insurance, transportation and meals," said a 37-year-old Everett man who has AIDS and is a Helpers volunteer.

The man, who asked that his name not be used, was diagnosed in 1990 and has been on an "AIDS drug cocktail" since 1996. With the drugs, he is well enough to work part time for Catholic Community Services. "They’ve been very understanding that when I’m sick, I’m sick," he said.

Despite side effects that include vomiting, abdominal cramps, fatigue and severe nightmares, the medication has turned his life around.

"When I was first diagnosed, the doctor told me I had three to five years to live. He was nice but blunt. Now I’m readjusting, to get out of that feeling you could die any minute."

He’s seen societal progress, too.

"People are more knowledgeable about how you can get it. There’s not quite as much fear," the man said. "There’s more family support for people now becoming (HIV) positive. When it was so new and scary, people were throwing people out of their homes. You don’t hear so much about that anymore."

Being healthier, and able to work, he said, "has helped me come back into the swing of trying to live a somewhat normal life."

"I still think I can perform and be part of society, and I want to be. I don’t want to just sit at home waiting to die. That’s not the way I want to live."

There are all kinds of heroes in the war on AIDS, from the healers to the helpers to the ones just trying to live.

Contact Julie Muhlstein via e-mail at muhlsteinjulie@heraldnet.com, write to her at The Herald, P.O. Box 930, Everett, WA 98206, or call 425-339-3460.