As a young man in his prime with a successful career, committed relationship and happy life in St. Petersburg, Greg Stemm wondered if he would soon die. It was March 1992, and he was diagnosed with HIV.
“At that time, it really was pretty much a death sentence. I sat in front of a doctor when I was 31 years old and I said, ‘Dory, am I going to live to be 40?’, and she said, ‘My answer to the question is probably not.’ That was a scary thing to hear at 31,” Stemm recalled.
Life-Changing Diagnosis Early In Epidemic
The daunting news propelled Stemm and his partner to fast forward their life and future together.
“Before I was diagnosed, I pretty much lived a typical life. I was coming out of my late 20’s, partying and having fun. I went to a four-year university and got myself a degree in communications and business. I hated the weather up north, so I got in my 1974 Pinto station wagon and ended up in St. Petersburg,” Stemm shared.
He added, “My career was going very well and I was involved in a relationship. The diagnosis sped up our relationship in a way because we thought we were going to die. We went to Tahiti and the Rain Forest and bought a fantastic house with the most expensive furniture. I went from planning my retirement to planning my funeral. I was going to funerals about every other month.”
Up until recently, he shared his status with merely a few.
“I chose to keep my HIV diagnosis a secret for many years. My mother had died of breast cancer about four years earlier than my diagnosis. I’m an only child so I really didn’t want to place that kind of burden on my father and I made the decision that I wouldn’t tell him unless I got sick. I had a few close friends who knew but I pretty much kept that burden all to myself.”
“Today 59% of all people living with HIV in the U.S. are over 50. By 2020 that will increase to 70 percent,” according to hltsad.org.
As a long-term survivor of 25 years, Stemm sometimes feels a sense of guilt.
He explained, “One of the troubling things for most of us who are long-term survivors is survivor’s guilt. There’s questioning, ‘Why am I still alive?’ and ‘What is it that I did differently when so many of my friends didn’t make it?’ Being a deeply spiritual person, apparently God wasn’t done with me yet, so I’m still here.”
Finding Courage, Support and Healthy Well-being
Through the years, he has turned to his community for support, starting with his congregation.
“I went back to the religion of my youth, Quakerism. The first time I publicly shared about my HIV was when I stood at a meeting one morning because that was someplace that I felt safe. That experience gave me the courage to go speak to my father and to other members of my family. Their response was remarkable. The only down part was they were concerned that I hadn’t spoken to them about it earlier. That was only a few years ago,” Stemm shared.
Another major source of support in his life is EPIC (Empath Partners in Care), a member of Empath Health, which he learned about in 2004 from a friend who worked as an EPIC case manager.
“I’m a long-term client with EPIC. I’ve taken full advantage of a lot of its services. EPIC has changed my life immensely for the better. The trained personnel here really know their stuff and many of them have been involved in HIV for decades. The volunteers are my peers with HIV. They’re amazing. I feel very much like they’re an extended family for me. I can’t imagine what my life would be like without EPIC.”
From the medical case management and food and personal needs pantry to the counseling and support groups, it all has helped enhance his health and well-being.
Stemm shared, “If I was going to live a really productive life, I needed to have an advocate, an ally and a partner in my health care. EPIC has a wide range of services. Case management in particular was very helpful to me. Without case management, I can’t imagine how I would have been able to navigate some things and handle the stress of trying to get certain paperwork in.”
Another service he has benefited from are items from the pantry.
“The pantry is wonderful. It’s not only the food, but the personal items that are important to me every month. It helps a lot to have that kind of support on a very limited budget.”
Individual counseling and support groups also have helped him thrive.
“It was really beneficial for me to have a therapist who specifically dealt with HIV people. We faced a terminal illness only to discover that it wasn’t going to be a terminal illness. My therapist helped me understand that there’s a new syndrome now called AIDS Survivor Syndrome, and many of the symptoms are similar to PTSD (post-traumatic stress disorder) from traumatic events.”
He added, “The peer-led support group I went to had about 90% of people who had HIV for 15 years or longer. I don’t believe I had ever before been in a room full of long-term survivors who could share our stories and experiences, I wasn’t alone. I have a full team of experts and many people who understand my disease, love me, care about me and help me. That’s been invaluable to me. It makes my life so much easier and I believe contributes to the fact that I’m healthy after a diagnosis of HIV for 25 years.”
Maintaining sobriety also has improved his life.
“It took me awhile to realize that I was an alcoholic. When I got into treatment, started going to AA (Alcoholics Anonymous) and got sober, my health improved tremendously – physically, mentally and spiritually. I eat pretty well and regularly. The most important thing with HIV is compliance. It doesn’t do you any good to have miracle drugs if you don’t take them. I believe that’s one of the reasons why I’m alive and healthy,” he said.
Called to Advocacy
As Stemm has been helped to live long and well, he gives back to help others. He and his community have supported EPIC’s fundraisers for many years.
“HIV’s no longer a death sentence and people can go on to live long, healthy and productive lives. There’s still education that needs to go on and EPIC is an important partner to be able to do that. I’ve been involved with Dining Out for Life, and my little town of Gulfport supports that event. I also participate in Tampa Bay AIDS Walk. I strongly encourage the community to continue the amazing support of our fundraisers. Every little bit helps, even a small donation.”
He appreciates the community’s financial and personal support.
“Love us and be sensitive that our lives have been difficult sometimes. I just ask for compassion and care. From my experience, I really can’t say I’ve gotten a whole lot of anything other than that from people who are negative and those who aren’t. My kudos to the people who support us. I need you. People like me need you,” he said.
Inspiring the Newly Diagnosed
Some of the most important advice he has to offer to those who test positive is to take control of their health with ongoing medical care.
He explained, “You need to find yourself a good HIV doctor. There are some very good ones around. You develop a relationship with this doctor. He or she will be able to prescribe you the appropriate drugs and you take those drugs as they’re prescribed. Your health care is your responsibility.”
It’s also important to reach out for support, he says.
“Make sure you’re in contact with organizations like EPIC that will help you with emotional and spiritual support and financially. Don’t make the mistake that I did – seek out people who love you and care about you. Don’t deal with this alone.”
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