by Andrew Coile
I have noticed that whenever someone in my social circle becomes hospitalized with complications related to AIDS, there is an immediate, unspoken polarization of everyone around them into two groups: the Positives and the Negatives.
You can see it in the expression on people’s faces as they enter the hospital room. The Negatives are thinking, “Oh, God. Not another one who’s sick.” The Positives are thinking, “That could be me, someday.”
While I certainly won’t deny that the people who are HIV-positive have a lot to deal with, the flip side of the equation is also no picnic.
I was once a member of a support group for anyone dealing with HIV in their life—positives, negatives, lovers, family, and friends. The group devolved into an HIV-positive support group, with the Negatives being asked to leave because they “couldn’t relate,” and they just “didn’t know what it was like” to be living with HIV.
Personally, I look across the bed every morning at my lover who has AIDS and feel that I’m living with HIV, too. Although there is a lot more to him than just his antibody status, his disease does affect us both, albeit in different ways. I am confronted with the pharmacy on top of the refrigerator every time I get something to eat or drink, even if I’m not the one popping the pills.
The Positives are, however, correct. I don’t know what it’s like to have HIV. I do know what it’s like to have more than 80 friends die. I do know what it’s like to hold the hand of someone six months younger than I am and watch them die. I do know what it’s like to watch the people around me get steadily sicker.
I do know what it’s like to be regarded as though I might have something contagious. My dentist quizzes me about my latest antibody test every time I go for a cleaning. I now have TB, which I got from going to visit a friend a week before he died, and I know what it’s like to be on daily medication to treat it. So I now know what it’s like to not tell my parents that I’ve gotten a serious illness (after five months, I finally did).
I do know what it’s like to watch my circle of friends slowly shrinking. It used to be that two-thirds of my friends were Positives. It is now about one-fifth. Yearly updates of my address book have gotten downright painful.
The chorus of the song Left Behind from the AIDS cantata “Hidden Legacies” is “It’s hard to consider without sounding bitter/Feelin’ lonely, cast aside, and left behind.” The Positives have their private club of which no Negatives can be a part. For a while (and maybe still, I don’t know), there were Positive-Only parties, for Positives to meet other Positives without any Negatives around. Of course, the Negatives haven’t helped with all those classified ads that say “HIV– seeks same.” Am I the only one carrying a scorecard about who’s who? I don’t think so.
During a four month period, I had my lover and an ex-lover diagnosed with AIDS, had two very close long-term friends die (for one, I had been the Medical Power of Attorney), and lost five friends during the month of December alone. When I voiced a small fraction of my grief, I was told by a Positive that I was wallowing in self-pity. I guess that to some Positives, Negatives aren’t allowed to be affected by AIDS.
I face a continuous battle to try to acknowledge my feelings about what is going on around me. I try not to pretend that everything’s “OK” (please, God, don’t let this be normal), or going “The sky is falling!”
Because I do a lot of AIDS activism, serving on committees and doing volunteer work, many people just assume that I’m a Positive. It’s hard to avoid the feeling that I’m “masquerading” as a Positive person. Do I take aside someone who has assumed that I’m a Positive and tell them I’m a Negative? It either comes across as condescending (“Oh, I’m not one of those...”) or embarrassed (“I’m just a Negative do-gooder doing what Positives would do if only they had the energy and were still alive”).
As friends have pointed out, the alternative to being a Negative is being a Positive. While I have no joy in being cast in the role of a “survivor,” I wouldn’t knowingly choose being Positive, either. I would, however, plead with the Positives to remember that for those of us destined to be Left Behind, our repeated losses are going to leave us scarred, too. The Positives do not have an exclusive contract on pain and suffering.
The curse of being a survivor is to have the cruel fate of watching so many of your friends die. I still miss my friend Henry, who had an unquenchable thirst for life. I miss Steven, with his Texas drawl and his wisecracking sense of humor. I miss Jimmy, who was the most spiritually connected person I’ve ever met. I miss Allen, who struggled to educated people about this disease, and maintain his dignity in a progressively deteriorating situation. I miss Walter, a towering blond presence who was always ready with a hug, and who gave such spectacular concerts on the piano that I had never before heard such beauty. Alas, the keys on his piano are forever stilled.
One thing that has helped me tremendously is being in a support group that is really supportive. With others who share the same experience, I can express my frustration, my sorrow, my grief, my anger, my sadness, and my hope, without the risk of being told, “Oh, stop whining.” I would encourage anyone in a similar situation to aggressively seek out support.
My old age will not be what I had once imagined, with so many people I loved gone. I have a niece who is just over two years old. Someday, it will be difficult to explain to her what it was like back in the 1980s and 1990s to lose everyone close to you.
The author is an AIDS and Gay civil rights activist who works as a computer programmer and lives with his lover in Springfield, Virginia.
Originally published in The Washington Blade. Also published in Equal Time, Minneapolis, MN.
I simply got tired of having Positive people say, “You’re not dying; you have no problems.”
The copy above is slightly different from what originally appeared in the Blade. I had edited it for possible syndication, making some things more explicit (like saying “an ex-lover diagnosed with AIDS” instead of fudging it in the original; not like anyone even remembers us as a couple ten years later except the people close enough to us who already know he’s Positive) than I felt I could get away with in the locally published version.
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