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It was a bleak Sunday in early February. Although it had been sunny earlier in the day, right now snow could be imagined in the mountains that seemed so near. These six almost huddled together as photographer Jennifer Esperanza lined then up for a photograph.
April lifted Tristan. His shirt rode up and his spleenectomy scar was visible as his tummy peeked out at the cold. Deborah shivered and grabbed on to Cailen. Nancy put her arms around Michael. Although some of these people had worked together, others were coming face-to-face for the first time.
The wind blew but as cold as these six were there was a feeling of warmth and joy on this hilltop in Santa Fe.
the disease is the toll the drugs can take. The side effects of protease inhibitors are often unpleasant. "It's not horrible," says Michael with a smile, "just a pain."
"The important thing for most people living with AIDS and HIV is how they find the strength. It crosses all boundaries and has made people better people. They look at life differently," believes Michael.
"There's another little good that has come out of the bad. It has helped the gay community. People who wouldn't come out have because they're ill. It's as if they discovered they were gay."
Following a stint in the Army, Michael worked in Phoenix and Reno before moving to Santa Fe. He was assistant to the Executive Director of Santa Fe Cares for three years.
His clinic duties include managing the switchboard, maintaining a database and tracking inventory. He also has established a network of office volunteers, "both people living with the disease and those who like working with the clients."
Deborah Baca doesn't feel she's doing anything extraordinary. In addition to being a wife and mother, a member of church and school committees in Santa Cruz, she both volunteers and trains other volunteers. She doesn't consider that extraordinary because she thinks everyone should be doing the same.
For the past seven years Deborah has been a major practical support volunteer for the Southwest C.A.R.E. Center and its predecessors.
"I've always been for the underdog," she reveals. "When I began volunteering with AIDS patients it wasn't a glamorous thing to do. Back then people were scared because there wasn't information. Now it's not so mysterious."
Her clients are all north of Santa Fe and as far as 45 miles from her home. She provides rides, cooking, grocery-shopping - but most importantly she becomes a friend to people who need her.
"Seeing how isolated people can be from family and friends is hard. It's not pleasant to think people can be so alone," she says.
Deborah's family not only supports her volunteer work but joins in as well. Her husband and daughter have both accompanied her to visit client/friends. Eight-year-old Karalyn is a veteran of the AIDS Walk, having begun while still in a stroller.
"I want other people to see that heterosexual women with families can and should get involved with helping those with AIDS," declares Deborah. "Some people have a misconception about who is HIV positive and who volunteers. We don't get a lot of minority and heterosexual people involved and it's important that that change."
Providing practical support fulfills a need. "That's something I can do," she says. "I can't give a lot of money but I can give my time and talent."
Nancy Enright gets mad at the media. "I would like for people to not take everything they read as truth. AIDS isn't over. We need people and support and money more than ever. AIDS is not over."
As Client Services Coordinator for Southwest C.A.R.E. Center, Nancy recruits, trains and supervises volunteers for both practical and emotional support programs, while coordinating the food bank and travel reimbursement programs.
Because her father was in the armed services, Nancy grew up in several places but finally called Texas home. She started her career as a claims processor for Blue Cross/Blue Shield of Texas, working for several other health and insurance organizations in that state before moving to New Mexico in 1992.
While commuting to work in Albuquerque, she volunteered for Hand-in-Hand in Santa Fe in May 1994. "When I took the volunteer training, it completely changed my life." As a result she joined that group's board, later becoming its volunteer coordinator.
"A couple of hundred people have been trained," notes Nancy. "From that pool we currently have about 50 active volunteers." Some work in the clinic office, while others deliver services to clients or help clients in daily living activities.
Although Nancy can get discouraged by "the politics and small town gossip and personal agendas that get in the way of what we're all trying to do," the personal rewards of her direct contacts with clients keeps her cheerful.
"I have a job where I'm appreciated everyday by someone. My circle of friends has exploded."
Cailen Sutherland is 11 "and three quarters" years old but is already a veteran of several AIDS Walks. At last year's walk the sixth grader at Acequia Madre Elementary School raised nearly $500.
Much of his awareness of the disease came when several individuals with AIDS talked to students at his school.
"I think AIDS is a hard disease to live with because people are scared of people who have AIDS. People are scared of difference. Not everybody knows there are only a few things you can do to get AIDS. I wanted to help people living with HIV and AIDS," explains Cailen.
Because Canyon Road is near his school, he went to all the galleries on the street, telling staff members why he was going to march and asking for their support. "One gallery director gave me $100."
His success has become a family experience. Last year his mother, who works at the Santa Fe Institute, raised over a thousand dollars when she joined her son on the walk.
A saxophone player who builds model rockets and flies kites, Cailen was surprised to see several of his classmates at last summer's walk. "It's up to people if they want to be in it but it would be best if more people walked."
"A lot of people out there still think it's only a gay man's disease or a drug user's disease. More and more there are babies affected. They don't deserve it. People should keep their minds open." As April Brandt speaks her two-year-old Tristan giggles while sitting on the floor drawing.
When April gave birth to her son she didn't know she was HIV positive.
"He vomited blood on me one morning. He vomited blood again in the car on the way to the emergency room. We were in the emergency room all day until they flew us to Albuquerque to Presbyterian Hospital. They tested him for everything, even giving him a spinal tap. Finally they gave him an HIV test. The first test was both positive and negative. Then they tested me."
April remembers it was Mother's Day when Tristan was transferred to the University of New Mexico Hospital "because they had a better immuno-deficiency unit. That was how I was told he was positive."
During his three months in the hospital, Tristan endured a battery of tests and procedures, including a permanent catheter port in his chest to accept medications. When he was six months old, he underwent a spleenectomy and almost died.
Through it all he remains a spirited child who likes music. He becomes carried away dancing, waving his arm, flashing a silver bracelet with a healing stone of red coral.
"He's always been good-natured," April boasts. "Everybody in the hospital loved him to death." Although he has taken as many as seven medications a day, right now he's only taking two. His weight has increased and his viral load is stable. He sees his pediatrician in Espanola every two weeks and gets a blood transfusion every three months when he visits his specialist in Albuquerque.
"It would be nice if this hadn't happened, but people along the way have been wonderful," reflects April as her baby reaches out to her with a laugh.