LET’S CONNECT
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Positively Aware
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Chicago, IL 60640-3016
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Corrections: MARIA DAVIS
In the interview, “Maria Davis Speaks Out” (November+December 2014), we reported that Ms. Davis has three children. She has only two. In addition, I Design is two words, not one. Positively Aware apologizes for the errors. Go to projectidesign.com.
Kicking ASS
Jeff [Berry], I wanted to applaud you and thank you for the recent issue on aging with HIV and long-term survivors. You wrote a great editorial introduction. It is an excellent issue. Thank you.
—Rev. Vilius Rudra Dundzila, Ph.D., D.Min.
Chicago
I just wanted to comment on the January+February 2015 issue, “Kicking ASS.” I really enjoyed reading the editor’s note, “I’m a survivor.” I related to it very much, since I am also in this group of aging with HIV/AIDS, a long-term survivor going on 30 years. Together with the poll responses, I felt not so alone anymore. I really appreciate that there is conversation about this topic now and I hope more will be done. I too have lost so many friends, acquaintances, and coworkers, and have had my own rollercoaster of obstacles related to having HIV/AIDS. I came through this trying to do the best I can with my life, but I still feel that there is a community that I’m left out of or don’t feel a part of. Before I came to Chicago in 1999 I lived in Indiana, where I was diagnosed at the age of 19. I was one of the first people in Northwest Indiana to come out about their status publicly and felt the wrath of the stigma from the community around me. There were few resources and the silence about HIV was absolutely horrible. I was part of change in that neck of the woods. Since I moved to Chicago I have continued to be involved in various ways and through my work.
I’m pushing 50 now and currently I am not working. I feel isolated and lonely. I’d like to see more programs for people like us that lived through this and are surviving, but are also getting older, and I’d like to be part of letting other people know that they are not alone.
—Greg Sanchez III
Chicago
I myself am not a long-term survivor, as I’ve been positive now for just over two years, but it is my plan to be a long-term survivor of this illness. Unfortunately, we as HIV-positive people face fear and stigma, especially when it comes from within the gay community, as was mentioned in the article [“Kicking ASS”]. We have spent many years battling forces from without on issues such as same sex marriage, equality, and just being recognized and validated for who we are as gay individuals.
We know discrimination well. Many are still afraid to come out of the closet due to fear. Yet, within the gay community where HIV is most prevalent, it’s saddening that there is still such a great divide between positive and negative, “dirty and clean,” to the point where I often find myself asking the question, “How can a house divided against itself stand?” I am often appalled at the lack of education within the gay community itself regarding HIV, the very community in which I am proud to be part of and live.
I do believe through education and awareness of the disease that things are indeed getting better, yet there is so much more work to be done. Or, perhaps, we choose to live in ignorance, and in the end, we do more harm than good. Unfortunately, it is this lack of education, this ignorance, that drives this stigma and fear that we face. I have several friends who are HIV-positive and have sworn me to secrecy concerning their status, and that’s okay. I respect their desire, as it’s a very personal and huge decision. I was once like that myself. God forbid anyone should know. I know living with the fear that surrounded that decision took me down a very dark road. I know what it’s like to lose potential lovers. I know what it’s like to reveal your status and have the phone go silent, the conversation stopped. I know what it’s like to lose a man I was deeply in love with because we didn’t have the conversation from the beginning. I know what it’s like to lose friends and loved ones to this disease, and wonder if that was going to happen to me. I know what it’s like to have an HIV-positive friend choose to take his life, simply because he could see no other way. All because of fear.
I chose to come out this past World AIDS Day and it’s been one of the best decisions I’ve made. The love and support that has been shown to me by my family and friends has been simply amazing, to say the least. Yet, what I find truly sad, it’s been my straight friends that have shown the most support. Very few of my gay friends, from my past or present, have reached out to me in the following months. I look forward to the day when HIV and labels have become a thing of the past.
—Herschel Bowen
St. Petersburg, FL
I wrote in my book Victory Deferred, way back in 1999, that gay men who have lost entire circles of our friends in our younger years have a great deal in common with older people who are losing their own friends “naturally” in old age: the loneliness, depression, feeling that no one is left who really knows us (“The Cost of Long-Term Survival,” January+Feburary 2015). I myself have found real connection with older people, regardless of sexual orientation.
My physical and mental health at 56 is about as good as I think it can be, thanks to good medical care, adherence to my medication, a healthy diet, exercise, a positive attitude, and the joy I find in life through such activities as cooking and gardening.
But I will say honestly: I am worried about aging with HIV. Add financial worry to it, and it can be a serious stressor. Getting old is hard enough; getting old and having HIV? Fasten your seatbelt!
—John-Manuel Andriote
Norwich, CT
via thebody.com
I’m 62 and was infected about 30 years ago. I was living in San Francisco and experienced the pandemic from the start. What a nightmare! Almost all my gay male friends died and I thought I would too. Then came all the new drugs and somehow here I am. My partner died two years ago of AIDS. After grieving for a year-and-a-half, I’m feeling much better. My positive attitude has returned and I still enjoy living; however, to be honest, I’m tired. I do not wish to have another relationship. After years of taking care of other people I want some time to myself now. I think I share issues affecting many single older men, gay or straight, positive or not. I wonder if I’ll wake up the next day. What if I become ill? There’s no one to take care of me now. I, like everyone, want to be independent until the end. I live only on my social security and worry about living on a fixed income while everything else goes up in price. Thank god I don’t seem to need much. I miss my friends and family. Now it’s my turn to grow older and I’m not sure what I’m supposed to do. My health, of course, is always an issue and I wonder what living with HIV for so long has done to me. How will it manifest itself? I recently heard inflammation causes cancer. HIV causes inflammation. I’ve had my share of side effects, hospitals, and ER visits. I’m not really afraid of the future but I know how things change when it hits home. I was prepared to die in 1995. I think about how much time I’ve had and my buddies didn’t. I’m grateful to have each day and try to make the best of them. But if I do become sick I don’t think I’m going to kick and scream and do anything to survive another year, or month or day.
It’s okay. I’m happy now. I just have to keep my sense of humor, especially when I look in the mirror. Thanks for letting me express myself. What a long, strange journey it’s been.
—Name withheld
New York State
via thebody.com
As a 72-year-old long-term survivor (possibly infected in 1982), I have had my share of health problems, including diabetes, double-bypass operation, and non-Hodgkin’s [lymphoma], plus a number of minor ailments that influence my day, such as neuropathy. This is not easy, I can assure you. However, it is very important to note how you are dealing with these physical setbacks. One must re-appraise life every time something annoying happens and one must try to stay positive in one’s outlook on life. Of course this becomes more difficult as one gets older, but even in a difficult situation there is some good to enjoy if only you grab these possibilities with both hands instead of letting yourself be overwhelmed by the negative aspects of an aging, unappetizing body full of physical defects. In a way this is not so very different from the aging process of supposed “healthy” people. Aging is no fun, but there is always something that one can enjoy!
—Name withheld
The Netherlands
via thebody.com
Being HIV-positive isn’t easy at times, but I find Positively Aware a great comfort. I learn about a lot of new and interesting treatments for prevention and hopefully, one day, a cure, but you also discuss other illnesses that are co-infections with HIV as well as the ones we face as we get older. Please keep up the great work.
—Nathan McBride
San Quentin
I’ve been positive for 18 years, and I’ve been on medication for 10 of them. I’ve remained undetectable and my CD4 has varied from 800 to 1,222. I had a brother and a sister die from this disease and I know firsthand what it can do. What’s worse is the way family will treat you. I don’t want another person to have their mom feed them from separate personal plates, drinking glasses, and eating utensils. It makes you feel alienated and unloved. Even though you know they care, you also know they’re scared. Fear can be dangerous to us, especially here in the prison system, when your status has been leaked. You’re hated before you’re known. I’ve never faced this virus. Never thought it would be me.
—Name withheld
Kershaw, SC