The November 1999 POZ was the best issue I’ve seen in a while. I guess activism is in vogue again. We need to get off our collective asses and own this disease. The “Yes” photo montage was brilliant. I’d love to see it made into a poster and put up at ASOs and community centers.
Walter Armstrong’s memory of Rand Snyder was quite moving (Editor’s Letter, November 1999). I must, however, correct a statement that Armstrong made. He wrote that when Snyder’s illness became serious, he was “imprisoned in a wheelchair,” owing to loss of bodily control.
I am a 30-year-old, disabled, gay male who’s had muscular dystrophy since age 3. I could walk until age 11. Since then, I’ve used a motorized wheelchair. I’m unable to dress or bathe myself. I have very limited strength in my upper body and rely on personal-care attendants for assistance.
I have never for a moment felt that I am a prisoner in my wheelchair—it is merely a device I use to get around. It’s the physical/attitudinal structure of an ableist society that views a wheelchair user as being held captive. I am a prisoner of a society that has conveniently arranged itself up to exclude individuals who do not walk (or see or hear).
Regardless, I persist. When my disability worsens to the point that I must use a respirator, I’ll have a portable unit attached to my wheelchair so I may continue to be active. I want people with AIDS to understand that the body is an instrument. With persistence and support, anyone can be “free.” I push on because I love life and there are things I want to achieve.
New York City
The first thing I read in the November 1999 issue was Walter Armstrong’s tribute to Rand Snyder. After the first paragraph my eyes welled up—what a beautiful story. It’s hard for me to grieve for my friends who have died because I feel so fortunate to have had them in my life, and they’re on to a better place. I’ve been HIV positive for 14-plus years and I’m healthy, but if I do get sick, I hope I have the courage and strength that Snyder had.
Don’t Baby Her
I feel compelled to present the other side of “How to Have a Healthy Baby” (November 1999), with no offense to women who choose to do so. In 1994, my fourth year with HIV, I became pregnant. I tried to have an abortion, but I was far along in my pregnancy and the cost was way out of my range. I did the 076 protocol, which at the time was AZT during pregnancy and via IV during delivery, and my baby got it orally for the first six weeks of his life.
My son, Aaron, was born June 18, 1994. He tested negative until his fourth month, then he tested positive. As devastating as this was, it didn’t surprise me. Aaron’s first problem was CMV. Then he developed hepatitis, colitis, pneumocystis and chronic parainfluenza. He went on a new med about every other week, ending his life with a total of 14 oral meds and three by IV. Have I even mentioned all the normal baby stuff ?
Aaron died when he was 14 months old. It wasn’t a tragic death. He just shut his eyes and stopped breathing in my and his grandma’s arms. I went numb. Though I never wanted kids, especially after testing positive, my maternal instincts took over early in Aaron’s life, and I fell deeply in love with this precious child. You’d think he couldn’t possibly have been a happy baby. Wrong! My son smiled every day of his life.
Aaron was in that small percentage of newborns that still tests positive, but if your baby is negative, you’ve got to make damn sure you keep yourself healthy for the duration. Don’t forget about the stigma still attached to this virus. And, last but not least, who’s going to pay for you to raise your child? My friends with HIV who’ve had babies are on Medicaid. I have a serious problem with that. Go ahead, have a baby, but not at the expense of the entire country. Missouri could have paid $1,500 for my abortion, but instead it opted to spend thousands of dollars taking care of my sick child. My tubes are now tied. I only wish my doctor would have done that in 1990 like I’d asked him to.
I’m still absorbing the disturbing story by Stephen Gendin and Kyle McDowell (“Both Sides Now,” November 1999). It would be easy to criticize these two for their lack of respect for themselves and each other, but as a gay male living with AIDS for five years, I’ll take another approach and applaud their honesty. My (HIV negative) partner of more than seven years and I have had our share of fear, frustration and frost when it comes to intimacy and, like Gendin and McDowell, it has had a powerful effect on our relationship. But we knew this issue was too big to ignore. Communication is key to achieving closeness. Our love has continued to bond us and help us grow. As for Gendin and McDowell, maybe they really don’t know love at all.
Via the Internet
Thanks to Stephen Gendin and Kyle McDowell for their candor in exposing the complexity of their relationship. Their accounts are evidence of some of the persistent obstacles to preventing HIV infection through sexual contact. Obviously having information about transmission is just not enough. It never has been.
Identifying the psychological associations we have with sex is critical in making new strides in communication. I’m not being sex-negative; I love sex. But I remember many times when I had an overhelming need to express who I was or something other than desire, and I found it easiest to do through sex. My need for that expression was so dire that the sexual activity through which I chose to communicate became non-negotiable.
An underlying safer-sex message of “change what you do” is simple enough. But if I define myself by what I do, I interpret the message as “change who you are.” Not so simple.
New York City
“Both Sides Now” raised many issues. Chief among them for me is the nature of humans to need symbols. In order to be safe from HIV infection and reinfection, we must understand what symbolic meanings we place on our behavior.
Anal intercourse without a condom is sticking a dick into an ass—not being emotionally closer or more strongly commited to your partner. Getting your partner’s cum inside you is simply that, and not you becoming one with your partner. Yet the symbolic meanings we attach to these behaviors become our way to “make real” our desires. We need to understand what our behaviors mean to us so that we can accept which desires can and cannot be accomplished and live in reality, not in suicidal fantasy. This is why prevention programs must, as Gendin wrote, deal with the complex emotional contexts in which we behave.
The difficulty in dealing with these issues is that symbolism is natural for humans. Was Gendin wrong? I can’t begin to answer. I know they are both human.
New York City
Your magazine is the best of its kind. Though I don’t always agree with some of the viewpoints, I can’t help but look forward to the next issue. Sometimes I feel drawn into the stories as though they were written especially for me. Other times there are articles that infuriate me to the point of no return.
One such article was “Both Sides Now.” I have been in a relationship for 10 years with someone who is HIV negative. I cannot begin to imagine the loss of self-respect I would endure knowing that I willingly infected my partner or that he shared in the process. The sheer devastation would be enough for me to take my own life.
At the End of His Hope
It was with great disappointment that I read the “new POZ” (November 1999). The one aspect of the old POZ still present is your focus on individuals at extreme ends of the spectrum of those living with HIV. You devoted pages upon pages to the sad story of your very own Stephen Gendin and his (now former?) partner Kyle McDowell. This, despite the fact that after destroying their health and happiness as a couple they both reported having learned little—if anything—from their experience as a formerly serodiscordant couple who now share a supervirus. On the other hand, the inspirational story of Tommy Reeder and Valerie Reeder-Bey only received a paragraph’s worth of info, and Flor Monterossa’s story about one page’s worth.
As a PWA and a licensed mental-health clinician, I feel it’s both my personal and professional responsibility to instill hope in those grappling with their disease, especially the newly infected. Where is your sense of balance in providing equal coverage to those whose stories may be less sensational but whose lives have been transformed from having a life-threatening illness into having a life-affirming one? Where is POZ’s sense of hope?
Via the Internet
Out Of Sight
I just renewed my subscription for the next two years. However, I was disappointed with the November 1999 issue. I couldn’t even get through all the articles because I find the new graphic design difficult to accept. It may look interesting, but as a late-middle-aged man who wears bifocals and experiences eye strain (let alone that I have HIV and always worry that “something else” is happening to my eyes), I was extremely frustrated! Usually, I read POZ in its entirety and clip certain articles, but I only scanned this issue and then threw it in the trash. I’ll still try to read POZ, even if I no longer benefit from it as I have in the past.
I anxiously await the arrival of your magazine every month. POZ brings positive information to people with HIV, even here in rural California. However, those of us over 40 might have a hard time reading your November 1999 issue because some fonts were too small or on a background that made it hard to read. I hate to miss any of the articles just because I can’t read the small print. Is it me or CMV?
I just read the November 1999 issue and I freaked! What happened to S.O.S.? I thought Sean Strub died or something, and I began to pray very hard.
Also, what’s become of the stunning art work and colorful illustrations that used to run with the personal columns such as River Huston’s? And, speaking of River, I miss her humor; she always cheered me up. Please bring her back.
I’m in prison, and since not everyone has access to the Internet, please include mailing addresses to write to for more information, not just websites.
Corcoran State Prison
I’m an AIDS awareness instructor on the Allred Unit of the Texas Department of Criminal Justice. First, I want to thank you for the great writing and educational information. POZ has many readers in the world’s largest prison system and is a big plus here on our unit.
I was floored when I turned to the November 1999 Planet and read Full or Empty, about a survey that showed that 49 percent of people with HIV said life is better with the virus. I know thousands of HIVers and have put hundreds of friends in the ground from this deadly, devastating virus—and not one of them ever said that life was better after contracting HIV. Is there a new antiretroviral that makes one feel that HIV is “rosy”? Am I the only one who found this survey shocking?
Texas Dept. of Criminal Justice
Iowa Park, Texas
Reading “Don’t Ask, Don’t Tell” (November 1999), I was shocked that all the activists who got to meet with President Clinton couldn’t remember whether or not AIDS was mentioned. Then they couldn’t even get their lies straight. I can’t believe that PWAs have to rely on individuals such as these! Get rid of them! Read my lips: Fight AIDS!
I really enjoyed the new format, though I’ve always been impressed with POZ. It is by far the easiest AIDS publication to read and digest, and it presents treatment updates in language that anyone can understand. The primary reasons I read your magazine are for treatment information and Lark Lands’ columns. Lands is a jewel in your crown. Her article “Blame It On Your Hormones” (November 1999) was stellar. Thanks for all the work you do. It truly is outstanding.
The last paragraph of “A Loaded Question” (September 1999) stated that if we avoid infections, eat and exercise well, and develop a positive attitude, with appropriate medical management we can “turn AIDS into a chronic, manageable disease that you can live with.” My intuition suggests that the writer, Dr. Robert Coombs, isn’t infected with HIV because he makes AIDS sound like a cakewalk!
How do you “avoid infections” if you are more susceptible to them because of a weakened immune system? How do you “eat and exercise well” when sometimes you can barely make it to the grocery store? How do you “develop a positive attitude” when depression, anxiety and fear often go hand-in-hand with an HIV diagnosis? How do you get “appropriate medical management” if you can’t afford it?
As someone who’s disabled and who’s been swallowing salvage therapy since 1994, I’m insulted! If the above stay-well program worked, not only would I be on the cover of POZ—I’d be international news! The longer we live, the higher risk we are at for heart disease, diabetes, cancer and more. Where was I when it was announced that diseases that are not curable are suddenly not terminal?
I am happy to hear that PWAs are enjoying a reduction of symptoms. In fact, I’m enjoying this now and must take advantage of this window of opportunity. During recess from basic survival, we need to take time to swim in the glory, but we also need to become much louder voices in the fight against AIDS. Since our batteries are somewhat recharged, we owe it to the AIDS community to make some noise.
Any progress we make against AIDS will inevitably benefit many diseases. After all, we got hydroxyurea from cancer.
New York City
POZ Reader Seeks Same
POZ has been one of the key factors in my remaining healthy while living with AIDS. But I’d like to see more info on women 40 and older who have the virus. Also, there isn’t enough about lesbians with HIV.
Thirteen years HIV positive, five with AIDS. Failed drug regimens and opportunistic infections. SSI. SSDI. Medicaid. Social services, food stamps, doctor visits. And I’ve managed to live through it all. That is, with POZ being such a great, informative source.
HIV is very hard on a person. But I think before any of the above kills me, the loneliness will drive me crazy. Having no one to love or to love you is the worst part of AIDS. Please write about the lonely people. Trying to find another person with HIV is like trying to find a needle in a haystack.
POZ responds: Please turn to “Of Dykes & Data,” and “Bookmark This” in Planet for tips on how to find love on the Net.
The “Yes” portfolio was moving, beautiful and honest (November 1999). Six pages of 18 people was so real that I’m sending you a picture to show that I, too, am not afraid to say yes. If someone were to accuse you of “promoting positivity,” you’re right to say, “so be it.”
Next Tran Out
I am a male-to-female transgender and was really glad to see that we are finally being included in POZ (“Love Me Gender,” October 1999). We are people who have real feelings and need to be fully understood as human beings. I would truly enjoy reading more stories about transgenders and seeing transgenders in HIV pharmaceutical ads.
Corcoran State Prison