Personal tragedy drove Barnhart to help others



    Most of the 300 red balloons released for the “Send Her Up” ceremony drifted east, except one distinctively bright balloon, which sailed west.

    The balloons were released in memory of the life and death of Barbara Ann Barnhart after her funeral.

    “That balloon was just like Barb,” her best friend Janet Cope said. “She was always doing her own thing.”

    What Barnhart wanted to do most was help others which led her to study nursing. She wasn’t aware she was HIV positive when she graduated with a bachelors degree in nursing from BYU in 1986.

    It was while she was working at the University of Utah Hospital in 1990 that her nursing dreams were shattered. A routine HIV screening came back positive. In disbelief she took the test again.

    After the third positive result, her doctor told her she would not live to age 30. She was 26.

    The virus quickly progressed to AIDS as she struggled to find the cause of her infection. Six months passed and then the cause was discovered. Her step-father, who sexually abused her from age 9 to 15, had been diagnosed with AIDS, Cope said.

    It would have been easy to succumb to bitterness, but Barnhart vowed to live her life with courage and grace. She decided she was not going to focus on dying, instead she chose to live.

    She was determined to enjoy her life. She did not want her success in life to be judged according to how long she lived, but rather how she lived, Cope said.

    Her ability to throw caution to the wind and have a little fun brought enhancement and joy to her life.

    “I am what I am, and I will look back and know that I had a great time,” she wrote in her diary.

    Her life was full of love, spiced with pain. She was always forthright about her disease and although she gained many friends through the ordeal, she also lost some.

    Barnhart understood the fear many people had towards AIDS and she decided early on she would face death openly and fight it every step of the way.

    “I’ve always been of the philosophy that if you have something you don’t like you fight. I don’t know what I’d do any different,” she wrote.

    Although she could not fulfill her dreams of being a nurse, she used her personal story and her medical background to become an HIV and AIDS educator.

    She gave her heart and soul to each project she tackled. Even on days she was fatigued she always finished whatever she started, Cope said.

    Barnhart received numerous awards for community service including the YMCA Human Services Award in 1997.

    She was a member of the board of trustees for the People With AIDS Coalition of Utah and the Utah AIDS Foundation. She also served on the National Speaker’s Bureau of People with AIDS.

    Ann Stromness, coordinator of the Journey Home program for people in the latter stages of AIDS, estimated Barnhart reached 35,000 Utahns in her AIDS-education efforts.

    “Barb believed that service to others was fundamental to her life,” said Kim Russo, her long-term caretaker. “She was a leader by example and in the end she taught us all something about giving of ourselves.”

    Barnhart’s goal was to alleviate fear and misconceptions through education. Despite being critically ill, she kept every speaking engagement until she could no longer fight off the assaults of the illness, Russo said.

    Barnhart said what looked like courage to others was to her the only way to survive.

    “This is called living through it,” she wrote. “This is the only way I know how to do it. What’s the point if you’re not living fully?”

    Her friends believe she knew her time was ending. She gave personalized Christmas gifts to each of her friends shortly before her death.

    “She had known that she would not be there at Christmas,” her friend Karen Blackwood said. “She thought not of her own pain or loss. She thought of others and made sure we all had something from her.”

    Barnhart viewed her death with resolution. She explained in her diary that she felt her death would be a successful transition allowing her to move on.

    Friends and caretakers felt Barnhart struggled to live for the benefit of those around her. Even when she was on life support they could tell she was aware of their sadness.

    She would not die until she knew we would alright, Russo said.

    “The most difficult and painful decision that I have had to make in my entire existence thus far was to talk to Barb a week before she died and tell her that it was okay to let go and that I would be okay,” Russo said.

    Barnhart died Dec. 9, of massive organ failure due to AIDS.

    Russo described her death as a peaceful and happy release from pain.

    “As I laid her back down, I felt as though she was standing right next to me. I believe that she was,” Russo said. “She had a smile on her face. She smiled all the way.”

    Kristin Ries, the physician who witnessed Barnhart’s death described her as a brave patient who died with grace and dignity. That was what she wanted.

    One request Barnhart made before she died was that her body be cremated. A dedicated Russo made sure this request was granted.

    She walked her body down the hallways to the crematory. Hospital employees said they had never had anyone demand to accompany someone as far as Russo did Barnhart.

    Barnhart’s ashes have been distributed among many friends and family members to sprinkle around the world.

    “Whenever a friend leaves on a trip, we give them a little bit of Barb to take with them,” said Barb’s friend Cathy Healey. “She wanted to be everywhere.”

    “Barb’s death has reminded us all that this epidemic is far from over,” said Barbara Shaw, executive director of the Utah AIDS Foundation.

    “AIDS thrives on complacency. This is a cruel disease. And we are still having people infected,” Shaw said.

    “We need to do a reality check that we, too are at risk,” Stromness added.

    Since Barnhart’s death, hundreds of cards and messages have arrived from around the country. Many people knew her from her speaking engagements through the National Association of People with AIDS and were touched with her personal story and motivation to continue living.

    Some people have referred to her as a champion, others call her a reluctant celebrity. All who knew her agree she was a remarkable friend who made a permanent impression on people’s lives.

    Barnhart was loved for many reasons, but like the red balloon that drifted west, it is her sense of humor, her flare for adventure and her individuality that will keep her memory alive.

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