By James Lister
In 1984, I was 30, and my friends started to get sick and die from AIDS. In 1989 I asked my doctor to test me for HIV. By this point, I had lost 50 friends to AIDS. Because I had lost so many people I was sexually related to, I knew that the test would come back positive. Yet, I was still stunned. I was really scared. I thought I was going to die like all of my friends and that my plans were never going to happen. The impact was so devastating, the fear was so overwhelming that I didn’t tell anyone, even my friends who were sick. I had always thought that my health was my most important asset. Now I had a disease that always ended in death.
Years of Increasing Loss and Isolation
I started to pour myself into my business, becoming isolated from everyone in my life. I also started drinking heavily to numb and remove myself from the world.
During the early years of the epidemic, many of my friends, who were in the hospital dying, lost their health insurance due to a claim by their insurance providers of a “pre-existing condition
.” The anxiety over losing my insurance led me to pay in cash for all HIV-related medical expenses
, which resulted in financial insolvency and added to my fears, anxiety, insecurity, and increased isolation.
In 1996, my test results indicated that my T-cells had fallen to 133. My doctor wanted to put me on medications. I wanted to wait as my friends died — the number of acquaintances, friends, and lovers I lost since 1984 now totaled 200 — because they had burned through all the antiretroviral medications (ARVs). I made a deal with my doctor that if the next test results were to come back with the same T-cell count, I would go on medication. And they did.
My first regimen of medications
was time and diet sensitive. I had to take them precisely every eight hours, with food. It was a constant problem to work in my catering business and try to stay adherent. Fortunately, the virus responded well to the medications and I achieved an undetectable viral load. Unfortunately, the medications were still experimental. Although the FDA approved them, the long-range effects were not known. I started developing high blood pressure, and my cholesterol and triglycerides shot up. I also suffered from lipodystrophy and lipoatrophy — conditions characterized by selective loss of body fat — and additional medications were necessary. What started out as three ARVs, taken three times a day, had now grown to over two dozen pills, taken two or three times a day.
A Promise to Live With HIV
Facing what was still a death sentence, and having witnessed the effect on my aunt and uncle of the death of their son at age 21, I made a promise to myself in 1996 that I would not die before my mother and father.
The year 1996 was also the first time I went to GMHC, what was then called the Gay Men’s Health Crisis. It was a very significant event, one that changed my life. I found staff members who made me feel safe. I started having lunches and dinners in the meals program as often as I could while still working. I met other clients who made me feel comfortable; they had similar experiences to share. This gave me an outlet to share my burden. I didn’t feel so alone and overwhelmed. This was when I actually began to talk with people about living with HIV, which allowed me to believe that there was an alternative to dying. Plus, I was able to stop drinking excessively, and my chances to live longer greatly improved.
Major Setbacks to My Health and Well-Being
From late December 2001 to mid-January 2002, I suffered severe fevers, teeth-chipping chills, diarrhea, dehydration, lack of appetite, and excruciating headaches, all sapping me of any energy I had. I had to repeatedly change bedding after soaking both sides of the bed. I rarely showered for lack of energy.
One Friday, I decided I was going to shower, dress, and go to GMHC for dinner. After exerting all of my energy to shower, I attempted to get dressed and couldn’t. I called a neighbor and asked if they would help me get to St Vincent’s Hospital. Several hours later, I was admitted. During three weeks of hospitalization, I found out that I was allergic to morphine, Celebrex, Bactrim, Elavil, and Imitrex. The resulting diagnosis was, “We don’t know, but we found a giant benign tumor in your liver which would not have anything to do with any symptoms you had.” I was sent home.
As the year progressed, my health had seriously declined. My doctor insisted that I stop working and apply for Social Security disability benefits. No one in my family had ever applied for benefits until they retired in their late sixties. I felt that there was a stigma attached to applying for disability. Adding to my reluctance were the countless stories I had heard from and about people who were rejected, and they were in worse shape than I was. I was very fortunate to meet a part-time GMHC staff person who encouraged me and volunteered to walk me through the process of applying. He stayed with me through the entire overwhelming and humiliating experience.
When I was approved for disability on January 1, 2003, I went from working for 35 years and owning my own business for 20 years, to living on $330 a month for all expenses except rent and $165 a month for food stamps. The devastating humiliation felt insurmountable.
‘My Entrée Into Advocacy and Activism’
In 2007, I found out that I was being discriminated against
by the rental assistance program that was supposed to help me by stabilizing my housing and providing me the finances for basic expenses such as bath soap, shampoo, a toothbrush, toothpaste, laundry and dishwashing soaps, and a phone line. As a result, I got in touch with GMHC’s Action Center, which assists GMHC clients to learn and use their advocacy resources to influence policymakers.
Through GMHC, I got involved with VOCAL-NY, a membership-driven grassroots organization that works on legislation to end the discriminatory policy in the HIV/AIDS Services Administration (HASA) rental assistance program. This would be my entrée into advocacy and activism. I met with other advocates and elected officials, most importantly the sponsors of New York’s 30 percent rent cap bill — former Senator Tom Duane and Assembly Member Deborah Glick. This bill would limit the rent burden to 30 percent of income for all clients qualifying for HASA rental assistance.
For GMHC’s AIDS Walk New York in 2010, I was honored to be the client speaker. Former Governor of New York David Paterson was also a speaker. I talked his ear off about the bill and its importance for people living with AIDS, while seated next to him on stage during the Opening Ceremony. Sadly, the Governor vetoed the 30 percent rent cap bill in October 2010.
Though my experience of advocacy and activism has not all been encouraging, I have felt empowered and learned that I could make a difference. This and the other forms of volunteering that I continue to do have helped me survive the trauma of ongoing health issues.
While the 30 percent rent cap bill has not yet passed, I have committed to see it pass the New York state legislature. I have even made another promise: that I will see all of my nieces and nephews graduate from college. The youngest is in fifth grade!
Here is my message that I hope will be helpful to others: Through volunteering, advocacy, and activism
, I rediscovered reasons to live. My life is not what I thought it would be. My goals have certainly changed. What is most important is that I will not quit.
James W. Lister, a native of San Diego, Calif., has been a resident of New York City since March 26, 1979. He is a client of GMHC, member of VOCAL-NY, board member of VOCAL-NY Action Fund, renegade activist, and advocate. Jim is grateful to have turned 59 on July 4, 2013, and dedicates his work to all of his friends and loved ones who died too soon.
This story originally appeared on Everydayhealth.com