Posts Tagged ‘gay’
Tuesday, January 12th, 2016
When he conducted the funerals, Tom Bonderenko tells me, he always wore his priestly garments and white stole. Even when no one showed up for the graveside service.
“It was important to show dignity and respect,” Tom says. He taps the coffee cup in his lap nervously. “I’m sorry,” he says. He clears his throat but it doesn’t keep his eyes from welling up. “No one has asked me about this in a really long time.”
We are sitting in his office at Moveable Feast, the Baltimore meal delivery agency for those with life-threatening illnesses, where Tom has served as director for the last eight years. His office is spacious and cheerful, but this conversation is a difficult one. He had discreetly closed his office door behind me when I arrived.
When Moveable Feast was founded in 1989 to deliver meals to home-bound AIDS patients, Tom was engaged in a different, more literal ministry to the disenfranchised. He was a priest staffing a homeless shelter for Catholic Charities of Baltimore. It was there he met someone with AIDS for the first time.
“A young man came to the door of the emergency shelter, sometime in 1987,” he says. “He was covered in black marks. Lesions, you know. Everywhere. He said he needed to clean up before his first doctor appointment the next day.”
Tom had grown up in New York City, and as a gay man he had known people who died very suddenly, as far back as the early 1980’s. But he had never stood face to face with someone so ill with the dreaded disease.
I couldn’t help but ask Tom how he felt, meeting that person.
Tom stares out his office window, and his eyes are so beautiful, romantically blue, framed with creases of worry. The eyes of a priest. He turns back to me with an answer. “Here was a young man who was going to find out from a doctor the next day that he had AIDS,” he manages. He starts tapping his coffee cup again, and he bows his head reverently. “And he was about to be told that he was going to die.”
Tom never saw the young man again.
People with AIDS became more common at the shelter before long. Tom got to know the regulars, and they began to ask him to perform their funeral services.
“They just wanted to know they would be buried,” he says quietly. “They didn’t want or need anything religious. Most of them were estranged from their families, drug abuse, that sort of thing. I think they were embarrassed to reach out to relatives. Sometimes, when they died we would find a member of the family to come, but usually it was just me and the departed at the gravesite.”
The burials were performed at unmarked graves in a lonely section of Baltimore Cemetery. The caskets were as charity required, simple wooden boxes, and they always contained a body. The funeral home would not cremate someone who died from AIDS because they were afraid of poisoning the air.
“I would always conduct the service out loud,” says Tom, now sharing the sacred details. “I would speak about the departed, and say what I knew of them, about where they were from. And then I would ask if anyone present had been harmed by the departed…”
I imagined Tom, in his vestments and alone in a forgotten graveyard, asking intimate questions out loud to the grass and the trees and the disinterested silence. “I would say that if the departed had harmed anyone,” he goes on, “for that person to please forgive them.” Tom’s voice falters. “And then I would ask the departed to forgive, too. I would tell them, ‘you’re on the other side now. Let it go.’”
“I think they just didn’t want to be alone,” Tom says, and now he looks at me without regard for his tears. “We don’t do this alone.”
Because of you, I think to myself. They weren’t alone because of you, Tom.
“I’m so sorry,” he says, again, wiping his face. “I haven’t talked about this in so long.” He considers the faraway scene he has conjured, his graveside questions to no one, and then adds, “It was the most important, meaningful thing I have ever done.”
I wonder aloud if the experience bolstered his religious faith or challenged it instead. He looks surprised by the question. “Well,” he answers after a moment, “I believe it strengthened my faith. Yes.” I want very much to believe him.
Tom left Catholic Charities, and the priesthood, not long after he conducted the last of his burials for the homeless. A decade later he joined Moveable Feast and embraced its mission to provide sustenance for people in need, people like those to whom he once ministered.
Tom’s fellow staff members know little about his life a generation ago. Most of them aren’t aware of the aching memories beneath the calm surface of their sensitive and capable boss. They may not fully understand why Tom leaves the office once a month to distribute food personally to homebound clients.
But they will tell you that when Tom Bonderenko returns from those deliveries, he always has tears in his eyes.
(I was struck when Tom said to me, “No one has asked me about this in a really long time,” because there are so many more stories out there for the asking. We only have to reach out. I hope you take any opportunity to have a conversation with someone “who was there.” This history must be chronicled and preserved. — Mark)
Monday, December 21st, 2015
Each year, several hundred people living with HIV – primarily gay men, with a happy sprinkling of straight women and our supporters – embark on the HIV Cruise Retreat (“The Poz Cruise”) for a week of fun and frolic on the high seas. The event started with a group of HIV positive friends and has grown enormously over more than a dozen years. The week is organized by one travel agent and a team of dedicated volunteers (and that includes me as one of the hosts and MC).
The days and nights are packed with exclusive shore excursions, private parties and all the perks of being aboard a large passenger ship — but nothing can compete with the freedom of making new friends without fearing HIV disclosure or stigma.
Here are five things I have learned aboard the HIV Cruise Retreat.
Poz guys are as educated about our condition as ever before, and we’re no longer clamoring for the very latest bits of information. Gone are the medical update lectures that were once a staple of the week-long Poz Cruise, replaced with more socials (like the infamous Red Party, right) and events like the Dating Game.
2. When searching for friendship, cast a wide net.
Years ago, the Poz Cruise provided separate events for the gay men and the (mostly female) heterosexuals. It just didn’t feel right to be kept apart. The gays actually loved the sense of family the women brought onboard, and the women loved our joy and uncanny ability to nail loungewear. The groups joined forces, and today some of the deepest bonding has nothing to do with sexual orientation or any of the other ways in which we often separate ourselves from potential friendships. It’s an important lesson for us all.
3. A zip line is the great equalizer.
It does not matter if that hunk you have been cruising by the pool puts the mucho in macho. When you have been pushed off a wooden platform a million feet above the ground and are whizzing across a thin steel cable, everyone screams like a girl. Not that there’s anything wrong with that. (There’s some rather acrobatic zip lining happening in the cruise video, above.)
Growing older is never a picnic – and that goes double for a gay man – but long-term HIV survivors have additional challenges ranging from survivor’s guilt to post-traumatic stress disorder. “Long time survivors really love the idea of getting away from it all with friends who really get it,” said Paul Stalbaum, the travel agent who has organized the Poz Cruise for the last 12 years and is a longtime survivor himself. “That may be why so many ‘men of a certain age’ join the Poz Cruise each year,” Stalbaum added. “The older survivors bond over shared histories while the younger cruisers have a ready-made group of mature friends and mentors.” If everyone rallies together for an afternoon of mud masks on the beach (above), all the better.
5. Sharing our greatest challenge is the very thing that can help someone else.
Before I said a word to other cruisers, I already knew them. Or at least, I knew a large and significant part of their lives. Being in each other’s company, whether or not the topic of HIV came up in conversation, brought a kind of immediate intimacy that is difficult to describe. It reminded me that the meaning of life is to take that about which we have the most shame or difficulty and use it as a tool to help someone else.
The 2016 HIV Cruise Retreat is a Caribbean voyage from Ft. Lauderdale, October 29 – November 6th. Find out more here or contact agent Paul Stalbaum at 888-640-7447.
Wednesday, December 9th, 2015
(I can’t resist posting this each Holiday Season. The video below is my very favorite, of the more than 70 I have produced over the years. Enjoy!)
My mother’s home here in Shreveport, Louisiana, was fraught with excitement last week. Christmas decorations littered the living room, the almond scent of cookies filled the air, and last minute phone calls and arrangements made it all feel like a major production was underway.
And there was. The event that had everyone scrambling was held on a Sunday afternoon, when siblings and extended family arrived for the taping of The ‘My Fabulous Disease’ Holiday Spectacular.
I am an extremely blessed and fortunate man.
When I was young, I remember watching “The King Family” on television (right), a big happy bunch that sang really well and wore lots of matching outfits. I was starstruck, and always wondered if that King family might bear some relation to mine. And if they didn’t, would they let me come be on their show anyway?
Well, today, I’m proud of my own family for displaying our dubious talents, and by going a big step further by discussing the importance of supporting those of us living with HIV/AIDS. For far too many, the difficulty in disclosing our status — or the result of doing so — has distanced them from the people they need most during times of challenge.
The Holiday Spectacular includes some family greetings, a cooking segment with Mom (you’ll want that divine almond scent wafting through your home, too), some holiday drag, a surprise here and there, and even an appearance by the big man himself, Santa Claus.
You may remember my mother from “What it Feels Like for a Mom,” a bracingly honest video created for Mother’s Day. You might also remember my gay brother Dick, who made an It Gets Better video with me. He was also one of the main subjects of the award winning “Once, When We Were Heroes” posting I made for World AIDS Day several years ago. But today, you’re also going to meet sisters, nieces and in-laws who have special holiday greetings just for you.
Enjoy the holiday special, my friends. I hope you’ll share it with anyone that could use some holiday cheer, or needs a reminder that they are loved. And as always, please be well.
p.s. As promised in the video, here is the recipe for Mom’s Christmas Cookies. I’m certain they’re fantastic for your t-cells.
(Note: Mother uses a MIRRO Food Press, a device that must have been manufactured during the Eisenhower era, judging from the faded instruction manual she still keeps handy. I found one on E-Bay for you for less than four bucks, or you can use a more modern appliance, if you must. I don’t guarantee the cookies will taste the same!)
Time: 10-12 minutes… Temp: 375F… Yield: 7 dozen
1 cup shortening
3/4 cup sugar
1/8 tspn salt
1/4 tspn baking soda
1 tspn almond extract
2 1/4 cups sifted flour
Green food coloring
1. Cream shortening, adding sugar gradually
2. Add unbeaten egg, dry ingredients, flavoring, and a few drops of food coloring. Mix well.
3. Fill the cookie press and form cookies on ungreased sheet. Sprinkle with sugar and bake.
4. Frost and sprinkle something fabulous on top of them (this is Mom’s provocative departure from the original recipe. That’s just how she rolls.).
Tags: acting, Aging, aids, culture, drag, family, gay, gratitude, help others, hiv, recovery, Recreation
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | No Comments »
Wednesday, November 25th, 2015
A variety of gay men spill their guts about their lives and HIV diagnosis. They are bracingly honest, sexually explicit, heartbreaking and hilarious. They are the men of The Infection Monologues, a theatrical event getting a 10th Anniversary staged reading at the Human Rights Campaign this Wednesday, December 2, 2015.
The event is FREE, with food and drinks starting at 6:00pm and the performance at 7:00pm. You can RSVP right here.
Created by the enormously influential gay anthropologist Eric Rofes (Reviving the Tribe), and written by Rofes and writer and advocate Alex Garner, The Infection Monologues provides a snapshot of the lives of gay men living in the epicenter of the crisis, and is based on hours of real-life interviews.
Eric Rofes died far too soon, taken by a heart attack in 2006 not long after The Infection Monologues premiered. Alex Garner has continued a respected career as a journalist and HIV advocate, currently leading a national PrEP education effort for the National Minority AIDS Council.
Alex and I had a chat about the play, the politics of barebacking, gay “respectability,” and putting gay sex back into the social agenda.
First of all, Alex, congrats on having this work of art revived after ten years.
Thanks, Mark. We are excited to be able to breathe life into this script again. I always learn something new when I reread it.
Can I give a shout-out to the late, great, gay anthropologist Eric Rofes, with whom you wrote the play? His book Reviving the Tribe changed my advocacy forever. I recently read it again.
I can’t say enough great things about Eric Rofes. None of this would have been possible without his insight and vision. His impact is ongoing and his books changed me, too.
I invited Eric to lead a gay men’s town hall forum in Atlanta in the mid-1990’s. He was the first person I knew to say publicly that bareback sex was critical to his sexual experience. He said it that night, and it was like a bomb went off in the auditorium. I thought the attendees would riot.
Eric was ahead of his time but such a needed voice about gay sex and gay men’s health. Those early years of the bareback debate were so raw and emotional — no pun intended.
I’m wondering if the themes in The Infection Monologues have remain constant, or if we’ve seen any progress at all…
The themes remain constant in so many ways but the world has changed drastically. The themes of stigma, disclosure, dating/relationships, and sex are just as relevant and compelling today but scientific advancements — treatment as prevention and PrEP — have radically changed the landscape.
I don’t think it feels like something is missing. I think it feels like a specific moment in time. The more things changes the more things stay the same. Much of the stigma associated with PrEP is the stigma associated with condomless sex. The bareback debate has simply evolved because of PrEP and unfortunately some PrEP users utilize PrEP as their shield of respectability: “I’m responsible” or “I’m protected so it’s ok when I bareback.” I have zero interest in respectability politics.
The voices in The Infection Monologues are such complete human beings. Funny, flawed, horny, scared. Tell me the process of how those voices came to be.
Eric was a great researcher and he conducted initial interviews of men who seroconverted after 2000. We used that research, as well as my own lived experience to create the three core characters. The additional characters were developed from writers in Los Angeles who drew from their lived experiences.
I’m all about telling the story of what happened to us — and what continues to happen. But these days it feels like so many of our wounds in the gay community are self-inflicted. Is that a fair observation?
I don’t think that is a fair observation. I don’t like that term. So much of our struggles are still institutionalized, whether it’s around homophobia and stigma, poverty, transphobia and sexism, lack of education, religion, etc. I believe we haven’t focused enough on our resiliency. As a community we endured the worst epidemic in modern history yet the lessons from that seem to be unknown. How did we survive? How did we find community, support, hope? How did we lose or find our humanity and how did we decide they were not going to destroy us. Ours is such a struggle of resistance and I think much of that has been understood simply in the modern marriage equality context.
Some advocates draw a straight line from the AIDS crisis to marriage equality. Do you agree?
I do see a straight line but not necessarily in the same way. The advent of anti-retrovirals allowed us to be healthy, presentable, and respectable. The movement could drop the messy, icky part and the part dealing with our sex, and focus on love and respectability. Strategically it was a brilliant move, but the impact was a desexualized movement. We now have the opportunity to make sex, pleasure and intimacy a top priority of our lives and our politics.
In my everyday life, I’m often torn between wanting to “tell the story” at every opportunity of what happened to us, and thinking I should just shut up already. Something about the trauma we experienced comes back to me, in some way, every damn day. So of course, the choice is to keep talking.
Who are we if not a collection of stories? That is art at its core and for those of us who have been marginalized, stories are a way to exert our humanity.
I’m honored I get to read the role of the “older” gay guy in the play. Actually, I’m actually older than the older gay character I am reading. Don’t get me started. I’ll use concealer that night.
(laughs) The “older” gay man is a very important perspective in the epidemic especially because he seroconverted after having lived through the war years. So much great complex emotion there.
Congratulations, Alex. It’s nice having a dialogue about the monologues.
Thanks. And I hope that others will explore creative ways to tell the stories of our complex and fascinating community.
Tags: aids, barebacking, culture, gay, hiv, physical, politics, PrEP, Recreation, Sexuality, testing
Posted in Anita Mann and Acting Gigs, Gay Life, Living with HIV/AIDS, My Fabulous Disease | No Comments »
Friday, November 6th, 2015
Some years ago, I told someone that I was HIV positive before I agreed to his invitation for a date. “Yeah, I know,” he casually replied, and then he looked a little embarrassed, as if he shouldn’t have said it. It was too late, of course; I knew exactly what he meant. He could tell my HIV status by my face.
I had The Look. The sunken, wasted cheeks of someone living with HIV. It became a common manifestation in the 1980’s and persisted until the medications that caused the condition, known as facial lipoatrophy, were changed or abandoned for better treatment. (That’s me, right, in 2008.)
Today, facial lipoatrophy is almost exclusively limited to long-term HIV survivors who used medications like d4t and ddi more than twenty years ago.
I’m one of those long-term survivors. I am proud of my history advocating and living with HIV. But as uncomfortable as it may be to admit, it’s a lot easier to live openly as a person with HIV when you don’t look like it.
When the symptoms began to appear, it meant that the choice to share my status, as an activist or on a personal level, had been taken away. My HIV was written across my face for all to see.
I felt ashamed, and then conflicted. For someone who has been fighting so hard to reduce HIV stigma, what is there to be ashamed of, exactly? Many of the physical signs of HIV treatment – from weight loss to fat redistribution to facial wasting – are worn as battle scars, if not badges of honor, by thousands of people living with HIV. My disease is mirrored in my physicality. What’s wrong with that?
And so, I began a journey that would include multiple visits to a specialist and more than $20,000 worth of various “facial filler” products injected into my face. My biggest advantage was the physician I chose: Dr. Gerald Pierone, arguably the most experienced person in the country on facial fillers and a contributor to TheBody.com. (That’s me, at right, last week.)
Along the way I chronicled my journey through video blogs. They span more than six years, explicitly show the treatments in Dr. Pierone’s office as well as before and after footage, and include a wealth of information and advice about getting facial lipoatrophy treatment, the products involved, and their relative costs.
Here are three of those videos that are probably the most helpful.
A Facial Wasting Update
In this video, below, I chronicle my third visit to Dr. Pierone, who checks up on my progress with temporary fillers Sculptra and Radiesse, and offers his own perspective on my treatment regimen. It is a good introduction to facial lipoatrophy and the treatment available.
I’m Gonna Wipe That AIDS Right Off My Face
Once again I return to Dr. Pierone for a check-up, but this time I inquire about a new, semi-permanent filler now known as BellaFill (formerly Artefill). This video also includes a lot of information about patient assistance programs for the temporary fillers.
Treating My Facial Wasting with Artefill
Switching to this permanent filler, now known as Bellafill, was the best decision I made. No more disappearance of the temporary fillers over time! Although this semi-permanent filler does not have a patient assistance program and can be quite expensive, I must say that the results have been dramatic and long-lasting.
One thing these videos make clear: facial fillers are not the fountain of youth, no matter what The Real Housewives may think. You can clearly see my own aging process through the years in these videos. What they do show, however, is my face as it would have been: aging naturally as if HIV wasting had never been an issue.
If you have any questions, I would encourage you to direct them to Dr. Gerald Pierone in the Ask the Experts forum at TheBody.com. I cannot recommend his expertise highly enough.
And as always, my friends, please be well.
Wednesday, October 7th, 2015
My discomfort began as I sat in front of my web cam, waiting to join Danny Pintauro in a segment on Huffington Post Live. Danny had recently announced on an Oprah special that he was living with HIV, which was big news for fans of “Who’s the Boss?” and those who loved the precocious little boy Danny played. Before my virtual entrance, Danny was telling host Nancy Redd how he was infected with HIV.
He wanted to explore “rougher sides” of his sexuality, he explained. And wouldn’t you know it, the first guy he hooks up with for that purpose offers him crystal meth. “And you combine meth, which completely ruins your immune system,” he said earnestly, “you combine having been up a good 12 or 13 hours… you combine that with some rough but safe sex, believe it or not, and it’s just a potent combination.”
My jaw dropped. Did Danny Pintauro just attribute his HIV infection to using meth and being tired? Did he just say that he had safe sex, “believe it or not?”
No, Danny. I don’t believe it. While gay meth addicts are many times more likely to test HIV positive, it is because they engage in high risk behaviors, specifically unprotected anal sex, and not because they missed a good night’s sleep.
Danny went on to explain, or at least presume, that his sex partner’s viral load “had to have been very high, because that’s the easiest way to contract it if you’re not being unsafe.”
I was incredulous. I began to mentally prepare retorts to the celebrity. If you are not being unsafe, Danny, you will not become infected with HIV, regardless of your partner’s viral load. Prevention is a two-way street. Your partner posed no threat to you if you were being safe, which you say you were. Which is ludicrous because you were high on crystal meth, a sex drug known for evaporating condoms instantaneously. Statements like “we were safe, believe it or not” would be pure comedy gold at any Crystal Meth Anonymous meeting.
But I actually said nothing to challenge his statements. When I appeared on the segment a few minutes later, I welcomed Danny to the world of poz activism and identified myself as a fellow meth addict in recovery. I then threw out an inane softball question to our newly-minted HIV positive celebrity/cautionary tale, because, well, he was on a popular sitcom and has the power to reach a lot of people. And because I totally wimped out.
We don’t always get the spokesperson we want. We have to work with the celebrity we are dealt (ask any transgender activist in this Year of Caitlyn). And it’s unfair to expect a random person with a celebrity past to be conversant on every aspect of HIV important to us. Besides, Danny’s messaging around meth and gay men alone is worthy of our gratitude.
It is also true that Danny has set himself up for criticism and public judgments. In a universally vilified segment on The View, one of the hosts, a breathtakingly clueless idiot named Candace Cameron Bure, challenged Danny to “take responsibility” for his actions, as if she had just nabbed an interview with the latest mass shooter.
If that was your last exposure to Mr. Pintauro, you’re probably feeling for him about now. So was I. That is, until he doubled down on his “I had safe sex” statements by telling US Magazine that not only had he been a condom-loving crystal meth addict, he was actually infected through oral sex.
I better take a breath here. Ahem. Okay. Moving on.
There’s no way to know the level of shame Danny Pintauro may be feeling around his addiction and HIV infection. And he must sincerely value his beloved place in television pop culture and hate to discolor it with his personal revelations. That took courage.
But attributing his HIV infection to the infinitesimal risk of oral sex – because God forbid anyone picture the former child actor taking bare dick and semen up his ass – isn’t the kind of transparency needed for a gay, HIV positive spokesperson.
And then, oddly, Danny added in his US Magazine interview that the “irresponsible” man he believes infected him over a decade ago — whose name escaped Danny for many years – has been on his mind and he has been trying to find him, even searching through obituaries and what-not.
Danny’s strange fixation suggests a blame game that goes beyond Danny’s assertion that he wants to be sure the guy “is okay.” Let us all hope that the man in question is living a healthy life somewhere, safe from Danny’s well-intentioned but pointless quest to contact him.
That man deserves his privacy at least as much as Danny Pintauro deserves his rocky, vexing media tour.
Tags: acting, advocacy, barebacking, culture, gay, hiv, recovery, Sexuality
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 16 Comments »
Wednesday, September 30th, 2015
For more than a decade I was an active crystal meth addict. They were the darkest years of my life.
I suffered numerous relapses as I struggled to get clean, and my woeful journey back to crystal meth was always the same. First, small changes crept into my behavior; not about crystal meth precisely, but vaguely related habits that had once accompanied my active drug use would begin entering my routine again.
A return to the gym and a shallow fixation on my body. An abandoned cigarette habit that returned in secretive fits and starts. A feeling of entitlement—to do as I pleased, to eat junk or rejoin the lurid party scene—swept over me like a declaration of freedom that hid its true intentions in the fine print.
And then the clarion call became more explicit as involuntary images of using drugs bombarded me, plaguing my sleep and my daydreams. The images became ever more seductive, promising euphoria and an escape from my own feelings.
But the most formidable thoughts that drew me back to active addiction were always about sex.
It feels ludicrous to me now. The sex life of a meth addict is as compulsive as it is pathetic. The drug ignited an obsession I had never known, taking my authentic sexuality and twisting it into something unrecognizable to me today. It was a constant pursuit of sex partners, naked video chats, pornography, and increasingly extreme and dangerous behaviors that lasted days and weeks at a time. It was an endless loop of desire and disappointment, played out over many years.
Incredibly, I believed the allure of hot sex was worth the consequences that piled up. Visits to the emergency room. An arrest. The company of psychotic and paranoid addicts. Weapons pointed in my direction. I simply wasn’t capable of seeing the wreckage for what it was.
Throughout my years of addiction, and even during my recovery process, I couldn’t help but wonder why. How could an intelligent and otherwise healthy man turn his life over to such a pitiful existence? What was going on in my mind?
Therapist and addiction specialist David Fawcett (right), in his remarkable new book, Lust, Men and Meth: A Gay Man’s Guide to Sex and Recovery, answers these questions and many more about the nature of addiction and the stubborn link between crystal meth and sexual compulsion. I cannot tell you how reassuring it was for me to read that there are physiological reasons for my addictive behaviors. There is comfort in knowing I am not alone in the mental changes that happen to crystal meth addicts, and that these changes are reversible.
I recognized myself on page after page of this book, including the fusing of sexuality and meth addiction, the stumbling blocks of recovery, and the deep and sometimes crippling shame that haunts active addiction and the recovery process.
Most importantly, this book maps a way back to normalcy. I am grateful to say that I recognized myself in these chapters as well, as the slow but steady process of rebuilding my brain took hold during my first years of solid recovery.
Whether you are a health care provider, the loved one of an addict, or are questioning your own addictive behaviors, this book reveals the most personal—and therefore, the most shame-filled—aspect of crystal meth addiction, and it provides guidance for a way out. Make no mistake, there is joy, engagement, and a worthwhile sex life on the other side of crystal meth addiction.
I am happy today. I am in a committed relationship that is rooted in honesty and has none of the selfishness and deceit with which I conducted myself during my dark and treacherous decade. Despite fears that my sexuality had been irreparably harmed, my sex life today is healthy and rooted in affection, love, and mutual care.
There are many avenues of recovery, but the science of addiction is always the same. This book outlines that science, while revealing the stories of addicts who, like me, have questioned if their sex lives might ever be the same again.
Thankfully, the answer is yes.
(This is an edited version of the book’s Foreward, which I was honored to write. I not only recommend this book, I urge you to share it with someone you know who may be struggling. You can purchase it here.)
Tags: culture, gay, help others, hiv, meth, recovery, Sexuality
Posted in Book Review, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 5 Comments »
Wednesday, September 23rd, 2015
When Miss Florida 1992, Leanza Cornett, competed for the crown of Miss America 1993, she didn’t just have gay hearts aflutter over our love for pageant competitions. We adored her because she proudly chose an AIDS awareness platform — and she meant it down to her lovely bones.
My interview with the groundbreaking title-holder is proof that, more than twenty years later, she is as feisty as ever. Our chat includes her HIV advocacy memories, some backstage dish from the pageant, recovery, sex, her love for the gays, and whatever happened to that jeweled, delicate crown.
Tell me about your exposure, as it were, to the AIDS crisis prior to becoming Miss Florida in 1992. Was it already on your mind?
The first time I heard the word “AIDS” I was 11 years old. It was 1982 and I heard a newscaster say the word and what I remember most was that it was a disease that was killing people. I was in my very small Appalachian hometown of Big Stone Gap, Virginia, and I went into full panic mode because I had eaten almost an entire box of what I thought was candy, called “AYDS” at my grandmother’s house. (AYDS was a chocolate diet suppressant, I found out later). So, as an 11 year old, I thought I was surely doomed. Fast forward, as years progressed so did the disease and thankfully so did our knowledge. When I was 16, I began working professionally in theater and met someone living with AIDS, an actor and a friend. Suddenly, the news story had a face, a name and a relationship with me.
During 1991, the year you were crowned Miss Florida, nearly 30,000 people in the US died of AIDS, and it was the leading cause of death among those age 24-44. It’s sometimes easy to forget the nightmare of those statistics.
By 1991, I was volunteering at two different places in Florida. Hope and Help, was an HIV service organization in Orlando. I did everything from answering phones to taking clients to doctor appointments. That’s where I met Guy Carswell, who became my best friend. I took him to appointments where he would have his Karposi Sarcoma (KS) lesions frozen off. I left every appointment with him in tears but also feeling incredibly empowered that the doctors were making strides toward a cure.
I saw an article in the Orlando Sentinel about a couple who had decided to take in foster children that were born with HIV. Jim and Charlene White turned their home into a non-profit organization called Serenity House and I began volunteering twice a week, taking care of those sweet children. Some were newborn infants and a few were toddlers. It was that year that I competed in Miss Florida and won. So yes, it was very much already on my mind and a huge part of my life.
Was AIDS your platform for the Miss Florida pageant?
No, and I regret that. I listened to people who said I’d never win, it was too controversial. I always felt like that was a compromise I should never have made. But, in the long run, if it had been something standing in the way, I may never have had the national platform I ended up with. Funny how things work out.
I had decided to champion AIDS as my cause going to Miss America no matter what. I met with the Executive Director of Miss Florida and told her and the rest of the Board that it wasn’t an option for me to do or speak out for anything else. The Florida board and everyone I worked with supported me wholeheartedly. I was surprised, simply because in 1992 the only people you heard about as activists were groups like ACT UP.
I absolutely must know about the final moments, among the finalists, before you were crowned and when you name was called as Miss America 1992. Please, spare no emotional detail! I live vicariously for this sort of thing.
I knew I was going to make Top Ten at Miss America, not because I was super egotistical or clairvoyant, but because a hairdresser had seen the list and I was on it and she told me. I even knew where I was in the placement — number six. So I was pretty thrilled with just that alone. Once I made it to the Top Five and I got to speak and answer questions about my platform on stage, that was the cherry on top. For me, personally, that would’ve been enough.
Thank God for video because I honestly don’t remember those final moments except for what I witness in watching it back now. I remember saying to Miss Iowa (Cathy Herd) that she would make a great Miss America. Everyone thought she would win — she was a double preliminary winner. I remember when Regis Philbin announced me as the new Miss America that it must be a mistake. I was wearing white gloves and I remember thinking that they were borrowed and I didn’t want to get makeup on them when I wiped my tears. I thought about the boyfriend who’d broken up with me and hoped he and his whole family were watching. I was just stunned. Completely stunned. Have never been so shocked in my whole life.
Hold on one minute. Your boyfriend broke up with you before the pageant? Is the best revenge winning Miss America?
No, he broke up with me my first year of college, and funny enough, we’re still friends today. But he broke my heart and I wanted to see him squirm, that’s for sure.
I happen to have a sash and crown in the back of my closet, for the 2015 Miss Summer Serenity Pageant, a camp drag thing they do in Washington to benefit people in recovery like me. So, take that. I didn’t cry when I won, I was very regal. Although those sharp stays in the crown were killing me.
I love it that you have a crown and sash…everyone in recovery deserves that but I’m especially glad you won!
Are contestants by and large sincere and gracious behind the scenes, worse, or somewhere in between, like all of us?
I think by the time most contestants get to Miss America, the catty ones have been weeded out. Girls are girls just like gays are gays (laughs) but it’s kept in check during pageant week. It felt less like a competition and more like putting on a great show. I’m still friends and communicate often with several of the girls from my year.
I know gay men who can rattle off former title-holders, their states, and what color they wore for swimsuit. I remember actual squeals coming from my gay friends when we saw you backstage at the Shanti Tribute to Peter Allen in 1993. We’re talking high-pitched sirens of delight.
I’m very, very proud to have been able to speak out on behalf of People Living with AIDS and gay men who probably suffered the most, especially during those early years. I think I confused the lesbians, because they typically hated Miss America, but loved anyone who stood up for AIDS. I was a conundrum!
Of course, your appearance at that event for Shanti was a bittersweet moment for me, as you know I have written about. You accompanied our founding director, Daniel P. Warner, to the event, and he was covered in KS lesions. You handled yourself with such graciousness toward him, holding tight to his arm.
Because I was so closely involved as a volunteer prior to ever winning, I felt really comfortable with a hands on, no-holds barred approach. I was criticized and questioned many times along the way. I remember I was photographed at a hospital kissing a child who was HIV positive and it made the front page of the paper. I got so much mail over that!
Thanks for referring to us as “people living with AIDS” during that time. You know your language.
I was reading an article published in People Magazine about the AIDS epidemic and the journalist kept referring to the people she was profiling as “victims.” I wrote a letter to People, correcting the journalist and explaining how important it was to write about “people living with AIDS” as opposed to victims. They published the letter, and a few months later I was in attendance at a Ryan White Awards banquet and Greg Louganis was a speaker. He cited my letter to People and thanked me for standing up for PLWAs. It was a God-shot for me, proof that standing up and speaking out reaches to so many places.
Speaking of God, you’re a woman of faith, and so many people with AIDS were traumatized by some of the rhetoric by religious fundamentalists during the early years. I’m thinking Jerry Falwell, for instance. How did you reconcile that, or explain to conservatives the importance of ministering, in the truest sense, to those living with the disease?
Great question. Well, I don’t know anyone who hasn’t been traumatized by religious fundamentalists at some point, no matter if it had to do with AIDS or anything else. I definitely felt the sting of that while I was in the thick of advocacy. Thankfully, I have a lot of Biblical training and knowledge, and anytime I felt I had to reconcile anything, I could always refer to the love, the merciful love that Christ shows to all of us. I understand that even more, in recovery, because that gift of powerlessness — knowing that we can’t control what people think or say or believe — it’s very freeing. The most important thing is to love, to show tolerance. I recall telling a minister once, when he criticized me about how vocal I was, that perhaps he should just pray for me and leave the rest to God.
It feels like we still get hung up talking about sex even today, which only benefits the spread of HIV, yet you were teaching people how to use a condom 25 years ago. Is our reticence about sex still the biggest obstacle?
I think we’ve certainly come a long way when it comes to talking about sex, and sexuality. As a parent now, I think the biggest obstacle is knowing when to have an open discussion with kids, because they are much more open minded about almost everything — race, gender issues, sexuality, differences. I think it’s incredibly important to have age appropriate, honest conversations with children as early as possible. This helps them grow into tolerant, open minded adults, which is what the generation before ours, and our own as well, missed out on. I also think that adults need to be exposed to that same honest talk, through schools, clubs, churches… Talking about sex has never scared me, but the results of NOT talking about it absolutely scare the hell out of me.
You were part of the ceremonies when the entire AIDS Quilt appeared on the Ellipse in Washington, DC, in 1992. I still can’t walk through a display of the quilt without losing it. What kind of impact did it have on you then?
Oh my goodness. That was one of the most powerful moments I’ve ever experienced. I traveled quite a bit with the Quilt and worked so closely with NAMES Project. Yes, the impact stays with me.
Did you make a panel?
I did make a panel for Guy when he passed. It still remains one of the most emotionally charged and difficult thing I’ve ever done. Labor of love doesn’t even begin to describe it.
How do you feel about the arrival of pre-exposure prophylaxis (PrEP), the pill that prevents HIV infection? For me, it’s the kind of thing we prayed for back in the day, but the uptake among those at risk of infection has been slow.
Wouldn’t the landscape of the disease be so very different if that had been available “back in the day?” I know I would take it, and I would encourage anyone who’s sexually active to do the same. I think any kind of shame in taking a preventative pill would pale in comparison to the possible ramifications for not taking it. That’s not to say that there should be ANY shame in contracting and living with HIV/AIDS. Men and women who I respect, admire and love with all my heart are living with the disease, but would, I’m pretty certain choose not to if they could.
You’re in Florida now, hosting a morning show called The Chat. How’s life today, and does HIV advocacy still have a presence in it?
Life is so good. I’m on a leave from the show for now, so I can spend some time with my two boys and family in California, but I’ll be back! The show is formatted like The View, with very opinionated, funny, smart women and it’s really fun and informative, too. I stay involved with HIV/AIDS organizations. I don’t have the national platform like I did in 1992-93 but whenever I’m asked to do anything, I say yes. I advocate as much as I can and will for as long as people remain uneducated and people living with HIV/AIDS are ignored or mistreated.
Many gay men like myself can take a kind of bittersweet pride in having stepped up at a time when it felt like the world had turned against us. And you were our ally when you didn’t have to be. I hope you still take a lot of pride in that.
I really do. And thank you. It’s one of the best decisions I ever made to step into the ring and fight with all of you, gay and straight alike. I’m so proud of what we have accomplished and continue to accomplish. It isn’t lost on me that I was, as Miss America, invited into places that other activists weren’t. Churches, schools, Rotary Clubs, private organizations, the White House. I am so very proud to have been able to use my title to make a difference and have the absolute time of my life doing it. The friendships that were born through advocacy are some of the most important and meaningful relationships I have. I worked with some real rock stars. I’m very grateful.
When was the last time you put your Miss America crown on? If you haven’t done it in many years I am going to be really disappointed.
Honey, every time I vacuum that crown is on. Haha! No, actually I put it on while doing The Chat last year. It’s here in California with me now, and since you mentioned it I may just have to put it on today just for fun.
Oh yes, please. You know I love you for that.
Ironically, my producer on the show put it on and broke it! It was so funny. She was mortified. So, a little super glue and it’s all good.
Lucky for us, your spirit is unbreakable. Thank you Leanza, for so many things.
And thank you. Your spirit and passion is contagious and inspiring. I mean that.
I inspire Miss America! I’m telling everyone. Take care, and think of me when you vacuum.
You take care as well, and thank you!
(Crowning photo from Miss America 1993 DVD; Portrait photo courtesy Miss America pageant; Photo of Daniel P. Warner and Leanza Cornett by Karen Ocamb; present-day photo by Renee Parenteau Photography)
Tuesday, September 15th, 2015
Not to get all southern gothic on you, but I depend upon the kindness of strangers. Especially when producing video blogs at conferences.
“Excuse me, would you please just hold this camera and point it at me while I talk to these people?” I must have said that sentence at least 40 times during the United States Conference on AIDS (USCA), held recently in Washington, DC. Every single interview you see in my video blog below was shot by whomever was wandering by at the time. Thanks, y’all!
The video contains three AIDS czars, one stripper pole, a ferocious batch of trans protestors, and more inspirational front-line workers than you can shake a stick at. My congratulations to the National Minority AIDS Council for their famously creative production of the weekend.
The spirit shared by the advocates, healthcare providers, and organizations who convened for USCA was electrifying, and just the boost many of us need to keep our energy up and our dedication renewed.
Oh, and special thanks to the CDC’s Act Against AIDS campaign for letting me take over their Instagram page during the conference (follow them here), and to Gilead Sciences for sponsoring the “Mind the Gap” session on social media and inviting me to host it.
I love what I do. I love the work you’re doing, too. As always, you are welcome to re-post my content, share it, take the YouTube video above and post it within your page, whatever might help share the messages of this amazing event and the awesome people who attended.
Thanks, my friends, and please be well.
(The photo above was the selfie the Social to Mobile speakers took at the end of our session, and includes – left to right – YouTube star Davey Wavey, blogger Guy Anthony, Michelle Samplin-Salgado of AIDS.gov, Luvvie Ajayi of the Red Pump Project, Miguel Gomez of AIDS.gov, myself, and Michael Crawford from Freedom to Marry.)
Tags: advocacy, aids, conferences, criminalization, culture, gay, help others, hiv, physician, politics, PrEP, recovery, research, serosorting, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 6 Comments »
Wednesday, August 26th, 2015
When Alana Oldham was only 17 years old, she found out the meaning of activism. A close friend had received an AIDS diagnosis and he wasn’t expected to live very long. Alana wanted to take action — to make a difference and vent her grief and frustration — but there were two major obstacles in her way.
It was 1989, and she lived in Shreveport, Louisiana.
“I had to do what I could to help my friend,” says Alana. “What was happening was cruel. People were discriminated against everywhere. Another friend of mine was fired from his job for having AIDS.”
And so, Alana Oldham did something in Shreveport that many people assume was only possible in much larger cities. She accepted an invitation from founding member Debbie Allen to attend an ACT UP meeting, one of the first to be held by the fledgling Shreveport group. And very soon thereafter, Alana took to the streets of her southern home town as part of angry protests. (Alana in 1990, above center.)
Robert Darrow, a founding member of ACT UP Shreveport, was right by her side. After years away from home, living in New York City and dealing with his own AIDS diagnosis, Robert had returned to Shreveport to die near his family. Instead, his health stabilized as he took part in a small town revolution.
“We were an angry bunch of young people,” Robert said. “We were angry at local doctors for turning us away. We were angry at judgmental families. Even at the only local clinic that would treat us, they installed an exhaust fan to get rid of the air we breathed.”
The group of activists were stunningly effective, showing up regularly on the front page of The Shreveport Times and on local television, and leading to the formation of an HIV clinic and a community-based AIDS service agency, The Philadelphia Center.
ACT UP New York activist Peter Staley (profiled in the Oscar-nominated documentary How to Survive a Plague) recalls taking notice. “I remember the thrill we got in New York when we heard about the launch of ACT UP Shreveport,” he said. “We had breached the Deep South!”
But not everyone in Shreveport was a fan.
“Even people in the gay community wanted us to go away,” said Robert. “They thought we were appalling.” Robert believes it was more difficult for ACT UP Shreveport to speak out than activists elsewhere, citing the hugely conservative majority in Louisiana. The disapproval of in-your-face activism also mirrored the self-hatred felt by so many gay men living in the Bible Belt.
David Hylan was one of those men. Married and closeted at the time, David watched ACT UP from the sidelines. “They were scary,” he said. “The radical nature of it was off-putting, especially since the south found all gay people immoral. And now there was this deadly disease.”
David realizes now that his discomfort had as much to do with his own masked sexuality as it did with the angry street activists he saw on the local news.
So it feels satisfyingly, poetic even, that David is now co-producer of Small Town Rage: Fighting Back in the Deep South, a documentary in the works about the history of ACT UP Shreveport. The film features interviews with many of the surviving activists and with family members of those who were lost to the epidemic.
A new Kickstarter campaign has already raised one-third of the project’s $15,000 budget. Dozens of hours of interviews have been filmed, and funds raised will cover remaining production costs and efforts to feature Small Town Rage at film festivals. Tom Viola, the influential head of Broadway Cares/Equity Fights AIDS, has issued a personal appeal in support of the project on his Facebook page.
“This whole journey has been a learning experience,” said David Hylan. “I’ve come to appreciate the people who were just fighting for their dignity.” His personal evolution led to a second marriage earlier this year, when David married his boyfriend.
The Philadelphia Center in Shreveport, forged by the efforts of ACT UP, remains the only HIV service provider in northern Louisiana.
Robert Darrow, the ACT UP member who had gone home to die and helped form ACT UP instead, served as The Philadelphia Center’s first executive director. Robert says that of all ACT UP Shreveport’s accomplishments, he is most proud that the agency serves thousands of clients. And there’s something else that gives him pride.
“I’m proud we did not remain silent,” he says.
(Visit the Small Town Rage site and consider even a modest token of support. I pledged $25 but any amount is welcome. Stay up to date on the film’s progress through their Facebook page or Twitter feed.)