#poz100

"I will not let this define me, and I will not let others define me by a virus."

"Today, I smile when I think of aging with HIV and growing older. "

I was diagnosed with HIV in early 1986. I was a newcomer to the U.S. with no friends or family and barely spoke English. When I learned I was HIV positive, the words echoed in my head for days. I didn’t believe it and took the test not just once but five more times, hoping it was a mistake or an error.

 Like many others, I passed through the different stages of emotion—fear, sadness, denial. But never once did I feel angry. I wasn’t mad at the man who gave it to me and I wasn’t mad at anyone else. I just placed the diagnosis in the back of my head and kept going on with my life. I accepted it as part of my life, but for a long time I internalized it and never opened up to anyone. The first person I told was my mom. We have always been close and when I told her in person, I wanted to assure her that I was going to survive this.

 Now I am open about living with HIV because I’ve learned that being open about my status allows me to help others who are also living with HIV or going through a difficult time. With this in mind, I founded the Facebook group HIV Long Term Survivors, a global network connecting fellow long-term survivors for support during difficult times.

 I’m proud of who I am and what I’ve overcome. Over 20 years ago, I was an immigrant, alone with no health insurance and struggling to make a living. Today, I am a citizen of this country with many good friends to enjoy life with. I’m grateful for the support of my friends, family, social workers and doctors; I wouldn’t be here without them.

 Today, I smile when I think of aging with HIV and growing older. Being a survivor has taught me to have hope and to make long-term plans. I want to grow old with a partner in my own home, have the support of agencies and organizations, and I want to always have a seat at the table of my community as a gay Latino and long-term survivor. It gives me so much pride because most of us were told over and over again that we weren’t going to make it. But here we are, and I’m happy to be here telling my story and showing others that even though we have hard times or difficult moments, it is possible to age and live well with HIV.

- Jesus, age 56/Diagnosed in 1986/ 2015 POZ 100 Honoree/ Last Men Standing Participant

"My life is filled with possibility." 

I was 28 when I was diagnosed with HIV and told that I would not live to see 30. That was the way they did things in 1989. I knew the first thing I needed to do was tell my parents I’m gay. I learned then that the truth is oddly freeing. 

I’ve lost numerous friends and colleagues to HIV/AIDS, including my partner. Since I received my diagnosis 27 years ago, I’ve experienced a great amount of disappointment, trauma and grief, but I try to find meaning in the chaos. The choices that I’ve made haven’t always manifested the results I envisioned, but they have brought me to this moment. I take great comfort in knowing that I always did the best I could, given what I knew or thought I knew at the time.  

 The truth is that I have had a great life. HIV/AIDS gave me a career that allows me to travel the world and I unexpectedly found respite in community service. I’m one of the lucky few who are getting paid for what they would have done for free! The truth, once again, is oddly freeing.

 With that said, I am no longer filled with dread for what the future might bring. I have embraced the concept of finding meaning and purpose beyond present circumstances. My life is filled with possibility. I am excited to age with dignity and grace, and I face each day with hope, knowing that I am laying ground for the future.

"We're not just alive, we're thriving!"

The following is a piece written by long-term survivor, and 2015 POZ 100 Honoree, Sherri Lewis, for the Well Beyond HIV campaign.

 STILL HERE

 Aging with HIV - A Woman’s experience as a long term survivor

 It’s been 31 years I’ve been living with HIV now – half my life.  I got tested when I was engaged and wanted to get a clean bill of health so I could get pregnant as soon as I said, “I do.” Instead I received a death sentence on April 12, 1987, my 33rd birthday. I am a long term-survivor. I am a first generation female living with HIV.  

 My first 12 years were about staying alive without medication and discovering alternative treatments.  Acupuncture, green drinks, macrobiotics, meditations and visualizations and activism.   It was about coping with the grief of not having a family, loss of career, trying to stay in the day so I didn’t project into my own horrifying death.  So I became a counselor, facilitated support groups, did speaking engagements became an AIDS Educator and performed for fundraisers.   I went to a therapist for twelve years who specialized in people with terminal illness and talked about life not dying.  That’s the shape my life took in those first decades.  I was healthy.  My first blood draw was 750 t-cells, A-Symptomatic and remained that way until 1996 when my first symptoms appeared as severe fatigue, a rash and my t-cells dropped to 250.  It was good timing since the first effective drug therapies had become available. They worked for me with no side effects at first but then my dancer’s body began morphing with belly fat along with facial wasting.    You don’t want to look like you have AIDS and suddenly the drugs you take to stay healthy make you look sick!  

 I was concerned what would happen when I went into menopause and how that would affect my HIV health.  My OBGYN has been treating HIV-positive women since the beginning of the epidemic.  My experience with menopause was hard. I suffered major sweats, bouts of crying, sleepless and soaking wet sweats.   It took a year to get my bio-identical hormone replacement correct.  The possibility could be from my long term HIV infection.  This year I had some kidney abnormalities. Or is it caused from fifteen years on antiviral medication or simply aging?   So my doctor switched me onto a new medication, one pill a day in the hopes that my kidney functions would return to normal.  I’m happy to report they have improved.  The questions I find with aging with HIV are what doctors question as well.  What is caused from long term HIV infection?  Or is it simply from aging?  First generation, long term-survivors are living the experiment while surviving.   I am still healthy. So I am fortunate and grateful.

 But I have the sadness that lingers every time I see a baby carriage or my girlfriends now in their 60s watching their kids graduate college.   And in the hetero community, the stigma is alive and well.  As a single woman years ago, I was introduced to my husband through a friend.  That hasn’t happened since.   Yes, I survived for 31 years.  And the cost was high not just in medications but a chunk is missing in my life that I will never know.  And that’s just the plain and simple truth.  My life has not had the fulfillment of a marriage with children and my dream career, but it has revealed to me other gifts. Gifts that I wouldn’t have known had I not been handed what seemed to be a death sentence long ago.   I’m one of the lucky ones.  I’m still here.