Madison, Tennessee

Positive since 1994

My story begins after high school. I graduated in June 1992 and met my first serious boyfriend in July 1993 at the age of 19. We dated for a few months, then we had unprotected sex. Little did I know, he had given me HIV. A year went by and everything was wonderful; we moved into an apartment together. I felt as though he was the “one,” and we were just starting our life together.

In October 1994, I became ill with an ear infection. My mother took me to the doctor because my equilibrium was off due to the infection causing vertigo. While my doctor inspected my ears and confirmed the ear infection, she also confirmed that I had thrush in my mouth. Thrush is a yeast infection that newborn infants get because they have no immune system. I remember her saying, “I highly recommend you get an HIV test.” I was thinking to myself, “There’s no way I could have HIV.” I wasn’t gay nor was I an injection drug user. I struggled with the decision about going to the nearest health department and getting a test, but eventually I did it. Meanwhile, I asked my boyfriend if there was any reason I should be concerned. His appeared to be just as shocked as I was. He did not go with me to get tested, which was the first clue that I didn’t pick up on.

I was called to come in and get my results. I didn’t want to go alone, so my mother and cousin went with me. I met with the counselor, and he was compassionate and caring when he gave me that life-changing result. It took two hours for me to calm me down and return to a rational state of mind. I threatened suicide, and the counselor did not let me leave until he knew I wasn’t going to kill myself.

I immediately went to my boyfriend’s job and confronted him; his comment to me was, “We will talk when I get home.” When he came home, he told me he was diagnosed in 1992 (a year prior to meeting me), and he contracted the virus through sharing needles at the gym (steroids). I was so angry and bitter toward him, but it was 1994, and HIV was considered a death sentence, and I didn’t want to die alone. We did not know anyone else with this virus; all we had was each other. We decided to get married in June 1995. This was not a marriage full of love and happiness. This was a marriage forced out of fear of being alone.

During the year that we were married, he continued to use steroids and hide them from me, along with money that went missing from our account. I found used needles hidden in the closet along with the vial of steroids he was using. It didn’t take long for his addiction to take a toll on his body. We were both given a diagnosis of AIDS. I had five CD4 cells and was put on AZT immediately. He was put on a different regimen and I don’t recall what his CD4 count was. We were both put on disability, because our life expectancy was grim.

My husband was put in hospice in 1996 and given six months to live. He became infected with MAC (Mycobacterium avium complex), which caused his spleen to become inflamed along with other organs. He was deteriorating fast. In September 1996, he went into the hospital on a Tuesday with complications of his heart and MAC. We were told he would not live through the weekend, based on the ultrasound of his heart. He died that Friday, September 13, 1996. He was just 25 years old, and I was a 22-year-old widow. The primary cause of his death was cardiomyopathy caused by steroids, and the secondary cause was complications due to AIDS.

I felt as though I was left alone to fight this battle by myself and I didn’t think I would make it. In October 1996, I became ill; I had been running a very high temperature for a week. I started to become short of breath so my dad took me to the ER at Vanderbilt. I was placed in a room, and the last thing I remember was my dad telling me he would be right back. He was going to smoke. When my dad returned he received the news that his daughter was in the coronary care unit and probably wouldn’t make it through the night.

I had pneumonia, but the doctors could not figure out what type of pneumonia I had. I was placed on a ventilator for almost two weeks and was not responding to antibiotics. My lung had collapsed. The doctors told my parents that they needed to make a decision whether or not to keep me on the ventilator and gave almost no hope of my survival. My parents rebelled and kept me on the ventilator until the doctors figured out I had pneumonia caused by cytomegalovirus.

I was finally able to be treated correctly and I slowly recovered, but not after a code blue. Technically I “died” for a minute, but they were able to resuscitate me. I spent over a month in the hospital, and it wasn’t until March 1997 that I was fully recovered. While I was on the ventilator they had to give me a paralytic medication to keep me from pulling the ventilator out. The side effects from the medication were I was not able to walk, talk, write or take care of myself. When I went home from the hospital, I had to sleep with my mother and have 24-hour help. I had a walker, a potty chair and a bath chair. I had physical therapy three times each week at my house to gain all functions back. I had to learn to walk, talk and take care of myself all over again. I was very weak. It was a slow process, but I prevailed.

After struggling to find out where this crazy journey called life was going to lead me, I found myself wanting to become an advocate for women like me who were positive. I decided to go back to school and work part-time on the weekends (I was still on disability). After I graduated, I accepted a job that enabled me to go off of disability and led to other opportunities. During this time, I met a man who was negative, and I had to disclose my status to him. He accepted my illness and everything was good for a year. Then, he became very abusive and used my illness against me. He threatened to go to the authorities and tell them that I exposed him to HIV and that I didn’t tell him I was positive. He told me he was the best thing I would every have as far as a relationship was concerned, because I was damaged goods.

I became depressed and started abusing alcohol to cope. I stopped taking my HIV medications. When I finally told my HIV doctor, she had to find another treatment for me because I became resistant to what I was taking. I finally had the courage to leave my boyfriend in 2005, and I never looked back.

It wasn’t until 2006, when I was in between jobs, that I asked my HIV doctor if she knew of any agencies or places I could go to get involved with HIV advocacy. She recommended Nashville CARES. So I went there and started volunteering for their Heart Line. I was interacting with clients on the phone and in person. It was exciting to be able to help others struggling with this illness. I also volunteered with the education department by participating and telling my story to human sexuality classes at local colleges and also some local high schools. In 2008, a position opened up in one of the departments at Nashville CARES. I applied for the Insurance Assistance Specialist position and I got the job a month later. I was well on my way to doing what I wanted to do, which was help people living with HIV and become an advocate for people living with HIV.

I spent four years in that department, and then I applied for a position that was based on more of what I enjoyed doing: speaking to people. I applied for a Safety First Specialist position and got it. Today my job consists of going to alcohol and drug rehab facilities and some halfway houses to do HIV education and testing and to share my personal story. Every day I am rewarded by speaking to people, sharing knowledge and just being supportive. I learn from my clients just as much as they learn from me. I like to think that my personal story along with my knowledge of HIV, hepatitis C, and other sexually transmitted infections are helping to reduce stigma of getting tested and reduce stigma of being around someone who is living with HIV. I am currently on four HIV medications and I do not miss any doses. My CD4 count is 874 and I am at optimal viral suppression. I may have had a diagnosis of AIDS at one time, but I am living with HIV. HIV doesn’t define who I am; it has actually made me stronger.

You can have a successful relationship after an HIV diagnosis. I met my husband seven years ago and we have been married for three years. He is HIV negative and I have educated him very well on safe practices. I have no children, but that was my decision. Here I am, 20 years later, and I have a great outlook on life.

I am grateful for the opportunity to be able to be an advocate for HIV-positive people. I never dreamed that my life would have played out like it has. It has taught me that change is uncomfortable, but once change happens, you are a better person for it. Change is good. It is what we need in this world still tormented by the stigma of HIV and testing. My goal every day is to normalize HIV and testing for those who are afraid. I get very excited when I see a test form with the “never been tested,” box checked; I like to think it was my information and story that prompted them to want to get tested. I will continue this advocacy for the rest of my life on this beautiful earth.

What adjectives best describe you?

Caring, sympathetic, courageous, strong, survivor, fighter

What is your greatest achievement?

Going back to school and graduating college after almost dying from pneumonia caused by cytomegalovirus

What is your greatest regret?

Not being fully educated on how HIV was transmitted; being naïve to think I was not at risk

What keeps you up at night?

Worrying about financial burdens, if the government will cut funding for HIV care, what I could have said or done differently to help someone that day

If you could change one thing about living with HIV, what would it be?

Looking at myself in the mirror and seeing a survivor rather than the effects of HIV medications. I have lipodystrophy, which has changed my entire body shape and caused me great depression.

What is the best advice you ever received?

Stop worrying about what people say and think about you; their opinions don’t matter.

What person(s) in the HIV/AIDS community do you most admire?

Joe Interrante and Lisa Binkley of Nashville CARES

What drives you to do what you do?

My experiences living with HIV for 20 years and sharing my story with other vulnerable women, perhaps helping them stay HIV negative. Knowledge is power!

What is your motto?

Change can be uncomfortable, but good.

If you had to evacuate your house immediately, what is the one thing you would grab on the way out?

My dogs

If you could be any animal, what would you be? And why?

A tiger. Tigers symbolize such character traits as bravery, competitiveness, and unpredictability.Tigers love to be challenged, and will accept any challenge if it means protecting a loved one.