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Personal Story

An HIV-Negative, Long-Term Survivor: Amanda Newstetter

AIDS/LifeCycle Personal Stories of "Why We Ride"

August 29, 2014

Amanda Newstetter and friends

Amanda Newstetter and friends

In her first job after finishing social work school, at a place that helped mentally ill people live independently, Amanda Newstetter met Steven Pratt, whose job she would be taking over. It was the fall of 1984 and he was leaving to go start the social services department at the San Francisco AIDS Foundation (SFAF).

"Steven and I had an immediate connection and felt like we'd known each other our whole lives," Amanda recounted. "He trained me on how to do his job and said, when I get my department together, I will come back and hire you to work at the AIDS Foundation." Amanda didn't believe he would return for her, but was interested in the position as her friend Eric, who had attended school with her, had been diagnosed with AIDS the summer before and died the following fall. But to her surprise, Steven did come back for her and hired her as one of four social workers.

Amanda was in that position for about 18 months. "I couldn't handle the grief that accumulated," she explained. "I was responsible for about 100 clients who had either AIDS or what was called AIDS-related [complex] (or ARC), and every one of those clients died, and most died before receiving their Social Security Disability." She describes having gone to funerals every week. "Many of the staff died, including my boss, and my other fellow social worker, Tristano." Her role at that time was to help identify which patients at San Francisco General Hospital might be eligible for housing within the two houses for people with AIDS set up by SFAF.

After leaving SFAF, she worked for the UCSF AIDS Health Project (now called Alliance Health Project) giving HIV results once the HIV test became available. "I worked at the anonymous test site in the Castro (then known as Health Center #1) giving four to six positive results each night," she recalled. "Most of those folks were dead six months later and I truly felt like I'd been through a war." And similar to many veterans of war, Amanda didn't realize how much of this part of her life and the grief were lodged inside of her until she rode for the first time in the AIDS/LifeCycle (ALC).

"This was my first ALC and I have wanted to do this ride for 10 years or more, but it's not well timed for people who have kids. I waited for my daughter to go off to college to do the ride." Her daughter was waiting for her at the finish line in Los Angeles. This year was also Amanda's 30th anniversary of working in the HIV field and so it was only fitting she make this the year she challenged herself to do the ride for the first time.

Amanda is currently the training manager for the UCSF AIDS Education and Training Center, which provides training and education for medical and social service providers serving clients with HIV from San Mateo up to the Oregon border. At 58 years old, Amanda welcomed the opportunity to honor her work, patients, friends and journey by participating. "I was not a big bike rider before the ride, but I trained with many wonderful and supportive people in Northern California and had a magnificent ride," she said. "I feel like I can do whatever I want in life after completing that ride!"

AIDS/LifeCycle is a fully supported, seven-day bike ride from San Francisco to Los Angeles. It's a life-changing ride -- not a race -- through some of California's most beautiful countryside. AIDS/LifeCycle is coproduced by the Los Angeles LGBT Center and the San Francisco AIDS Foundation and is designed to advance their shared mission to reduce new HIV infections and improve the quality of life for people living with HIV/AIDS. This year, over 3,000 cyclists and volunteer roadies raised just over $15 million.

David Duran is a freelance journalist and writer based in Brooklyn, N.Y. You can follow him on Twitter at @theemuki.

Copyright © 2014 Remedy Health Media, LLC. All rights reserved.

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