Positive since 1993
Like many of us, when I was first diagnosed in 1993, I thought my life would probably be over in the near future. Now, about 23 years later, I have not let my status dictate the “quality of life” I have. Being a part of a group of people who are living longer by managing their status has convinced me that this is truly my “somewhere over the rainbow” period.
My biggest health concerns are with other manageable illnesses, such as diabetes, non–Hodgkin lymphoma and brain aneurysms. I underwent 10 rounds of chemotherapy in 2007 and had a craniotomy in 2008. In 2011, I was put into a medically induced coma for six weeks due to respiratory failure and pneumonia. During the coma, I went on dialysis because of kidney failure. I was totally surprised when I came out of the coma. I realized that six weeks of my life had passed, and I didn’t know it. On the bright side, the steroids I was put on during that time caused me to develop cataracts. I had cataract surgery and haven’t needed glasses or contacts since then.
HIV antiretroviral drugs have improved so much since the first days of AZT. Now, more people are undetectable. If you stay adherent with your meds and follow up on medical appointments, you will live longer.
From 2014 until 2016, I was employed part-time as a patient navigator for newly diagnosed HIV patients at a local health care facility. I met with clients to direct them toward the services they needed (case managers, housing and nutritional services) and worked with pharmaceutical companies that specialized in the research and production of HIV meds.
I worked with the companies’ representatives and community liaison people to present “Lunch and Learn” gatherings based on my clients’ questions and interests. When the position was expanded to full-time, I had to decline for personal reasons.
I have settled into my retirement years with plans of staying active. My water aerobics class just ended. I am about to start tai chi and yoga classes soon.
On the personal level, I have always been blessed with a good support system of family and friends. I have several circles of friends whom I nurture and interact with often.
My partner of six years, who gave me support and encouragement through the chemo and brain surgery, decided to leave after the incident in 2011. He remained my roommate until I finished my rehabilitation and was able to walk and drive again. He now lives in another state, and I only hear about him from mutual friends. I will always be thankful for his love and support and will always wish him the best. I remember the great amount of maturity he displayed when I let him know that I was HIV positive and that if he wanted to pursue any type of relationship, we would have to follow certain guidelines. He wasn’t hesitant to tell me that my HIV status was just one part of me and just another part for him to embrace with everything else he loved about me. When he decided to break up with me, he admitted that when I was in the coma for six weeks he was lost and needed to find himself and figure out his own destiny. He was 30 years younger than me. Although I always thought we would be a “forever” thing, I also realized that us growing apart was probably inevitable. Lesson learned, but I’m not sorry for the time we had together.
Since 2012, I have realized that most older gay men are afraid of growing old and not having a partner. It might not be desirable, but in some cases, it is a reality. I am trying to make improvements in my life that will make me even more desirable and needed. I keep close friends close and set up boundaries for who I let in my circle. I’ve made a few mistakes lately but catch myself quick enough to exit out of situations that are not mutually beneficial. When the “right one” comes along, I’ll know it and so will he. In the meantime, I am happy to exist and enjoying a life I thought was going to end.
What three adjectives best describe you?
Managed. Optimistic. Survivor.
What is your greatest achievement?
Having been influential to other HIV-positive individuals who didn’t see that living with HIV doesn’t define or categorize you; it’s just another part of your being. Embrace it, and don’t let it dictate your life.
What is your greatest regret?
Not getting involved in the HIV community when I first was diagnosed and spending time feeling self-pity and preoccupied with dying rather than managing and living.
What keeps you up at night?
How many people are still misinformed about HIV and how to treat people with HIV.
If you could change one thing about living with HIV, what would it be?
The concept that it is a “gay” disease.
What is the best advice you ever received?
Life isn’t about how to survive the storm but how to dance in the puddles.
What person in the HIV/AIDS community do you most admire?
Ryan White, who was one of the most courageous individuals ever.
What drives you to do what you do?
Quality of life isn’t negotiable. “You make it happen.”
What is your motto?
HIV doesn’t define who I am. My character and outlook define my personality.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My dog because he always is happy to see me and loves me unconditionally.
If you could be any animal, what would you be? And why?
An American bald eagle because it is a symbol of courage and strength, a bird that can soar among the clouds and is majestic in appearance. Am I being a little narcissistic? Lol.