A Life Interrupted
In the last few years I have come to realize that up until the age of 26 I had led a good life, filled with many accomplishments. I grew up in Santa Cruz, CA, and had a pretty happy childhood, despite the fact that I hated high school and never graduated. I'm an only child and have always been extremely independent. So when I was 17, I decided to leave home and move to Los Angeles. I went to Santa Monica Junior College and graduated in two years with an AA degree (with honors) in Liberal Arts. I then transferred to UC Berkeley where I completed my BA degree in Spanish, with a minor in Education. After that I attended Stanford University where I received my MA degree in Education and my teaching credential. I did all this by the age of 23. I then worked as a high school Spanish teacher for two years. During my first year teaching I went to Spain on winter break to visit some friends. I liked it so much that I enrolled in a second MA degree program, in Spanish, and studied there that summer.
By the middle of 2000 my life was going great, better than it ever had before. I became burnt-out as a high school teacher so in June I quit and moved to Madrid, Spain. I felt like I had finally found where I belonged. I was studying, working, traveling and even in the process of buying a flat. I was making a new life for myself in Spain and it was exciting. I loved my life and was happier than I had ever been. Then I got sick.
I was hospitalized in Spain, and then released. I went to the States to visit my parents and got sick again and was hospitalized in Albuquerque, New Mexico. On my way back to Spain I passed through the Bay Area to visit friends. While I was there I checked in with my old doctor whom I'd had for a few years before I moved abroad. I had never received any diagnosis of the cause of my hospitalizations. I was only treated for symptoms. So in order to follow up, I asked my doctor to test me for everything under the sun that he could think of.
A few weeks after I got back to Spain I received an e-mail from my doctor, urgently requesting that I contact him. When I called him he told me that my HIV test came back positive. I was the first person in his practice to ever test positive for HIV, so needless to say he had absolutely no experience in how to deal with delivering this news and offering any counseling or information.
While I definitely was not expecting it to be HIV, on some level I was not surprised. With hindsight I was able to look back at my health over the last few years and things started to make a lot more sense. During the previous two years that I had been working at the high school I was sick a lot, used more sick days than I had and was in my doctors' offices often. My general practice doctor kept getting weird blood work for me but never figured out why, he also couldn't explain my hair loss. My gynecologist was puzzled by my chronic yeast infections and abnormal pap smears. In my mind I assumed my health issues were the result of the stress of being a first year teacher and also to being exposed to so many students who were often sick themselves. Neither of my doctors ever suggested that I get tested for HIV. In their eyes I wasn't in a risk category. I was a white, professional, middle-class, educated, non-drug using, straight, young female. People like me don't get HIV. Yeah right!
If you have had unprotected sex just once in your life you are at risk! After getting pregnant at 17 due to a condom breaking, I went on the pill. I was more worried about getting pregnant again than catching a STD. Over the years I think the contraceptive security of the pill made me less vigilant about using condoms all the time. I know I got HIV from having unprotected sex, but because it was the first time I'd ever been tested, I'll never know exactly when I was infected or by whom. When I was diagnosed I had only 18 CD4+ T cells and my viral load was over 100,000. I don't know how far over because that particular test only measured up to 100,000. Based on these numbers, I was told that I could have been positive for anywhere between 3-10 years! That meant that I was infected between the ages of 16-23.
I'm 30 years old now and over the last four years have come to terms with my diagnosis. It was a long and very difficult process. After a few months in Spain trying to ignore the situation, I moved back to the States and into my parent's house. I knew that I needed access to good medical care and a support system in order to deal with my new diagnosis. I went to NMAS (New Mexico AIDS Services) and received a variety of excellent services from them, including case management, therapy, legal assistance, and support groups. They set me up with medical care at the Truman Street Clinic, that is part of the University of New Mexico Hospital, where I met with a doctor, pharmacist and health educator. I feel very lucky to have received such good services and support from such caring people.
Even so, I still felt very alone. All I wanted to do was meet someone else like myself who was positive. (This desire would later influence the work I chose to do.) I'd meet lots of positive people in my support group, but they were all gay men. The women's support group was small, didn't meet very often, and consisted of women of very different backgrounds from myself -- older, or with children, or married, or in recovery. I wanted to meet another young, single, childless, positive woman who I could relate to, who was my peer. My case manager introduced me to another one of her clients who was very similar to me. She was younger and had known about her diagnosis longer. She changed my life. I admired her strength and her ability to accept and deal with her diagnosis. She tolerated my endless questions and encouraged me to always keep a positive attitude and outlook. She became one of my very best friends (even thought she ended up getting married and having a kid) and I have learned so much from her. At times she has given me a reason to keep living and she continues to inspire me today.
During my six months in Albuquerque I gathered as much information as I could about HIV. I read, researched and talked to people. This investigation was my way to deal with my diagnosis. Being a former teacher with a background in education I sought comfort in learning. My favorite saying is "Knowledge is power!" I started meds and got control of my health. With an undetectable viral load and almost 200 T cells I moved back to San Francisco, CA. I intended to pick my life back up close to where it had been when it was so rudely interrupted by HIV.
Over the next few years I tried going back to being a teacher, but it never made me happy, so I tried other jobs. I fought with depression, opportunistic infections, and weight that I gained, lost, and gained again. My hair fell out and grew back twice. I attended a WORLD retreat. I dated, disclosed, and had a negative boyfriend for a year with whom I traveled back to Europe. I bought my motorcycle and I went sky diving for the first time. I basically learned how to work, love and live all over again being HIV+. It's a process that is never-ending. I still constantly work on my physical, mental and emotional health. It's a balancing act.
I started on the path to my current position by becoming a volunteer at Project Inform in San Francisco. I worked as an operator on their National HIV/AIDS Treatment Information Hotline. I really enjoyed the work and I learned a lot while there. My volunteer work led me to a part-time, temporary position with the organization as the Volunteer Programs Coordinator. As my time was nearing an end at Project Inform a Peer Advocate position opened up at WORLD. I've always admired the work that WORLD does and the retreat that I had attended made a profound impact upon me. I was very excited to join WORLD in August 2004. I work part time here and part time as a Youth Peer Advocate for the East Bay Agency for Children. In these two positions I get to combine my experience teaching youth, my desire to help other women in my situation, and my passion for education. I love working with my clients and doing various speaking engagements, presentations and trainings.
Somehow I always knew, in the back of my mind, that if I were going to make sense of why this happened to me, I'd use my background in education, and my status as a HIV+ woman to work in the HIV/AIDS field and become a resource to the community.
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This article was provided by Women Organized to Respond to Life-Threatening Diseases. It is a part of the publication WORLD Newsletter. Visit WORLD's website to find out more about their activities and publications.