Posts Tagged ‘physician’
Thursday, November 28th, 2013
My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.
Emil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.
It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,” over and over again, before the drink would close Emil’s eyes and quietly kill him.
Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.
There were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.
There is a shy, friendly man at my gym. There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.
There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.
There was a time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.
There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.
My best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But there was a time when he knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.
Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.
Watching them disintegrate felt like a preview of coming attractions. But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.
There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.
There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.
Jeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.
He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.
“I tell you what,” I offered, “I’m from the future, and I can tell you anything you would like to know.”
“OK then, what happens to my parents?” he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.
“They went to Hollywood and won big on a game show, so they never did need your support in their old age,” I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.
“When…” he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?” There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.
“It does end,” I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.” He digested each word like a revelation, and slowly relaxed into sleep.
There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.
The truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague.
He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.
To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.
Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.
But once, there was a time when we were heroes.
(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, written to commemorate World AIDS Day. It has since become my annual post to commemorate the day. Here’s to a joyous and healthy holiday season for us all. — Mark)
“Know Stigma” (I hereby pronounce “stigma” the Word of the Year) is a terrific site devotes to photos and video that challenge our attitudes towards one another as gay, straight, femme, old, poz guys, etc. There are some really intimate, honest videos with people discussing the impact of stigma on all aspects of their lives. “We want to create a conversation around how we treat each other as gay, queer, bi, trans, and straight men,” says their site. “Like everyone, we have our biases and prejudices. Many of us are made to feel invisible because of age, body type or skin color. How can we say what we want without hurting others? How do we imagine our actions and words might make someone else feel?” Check it out.
After a lot of talk about HIV stigma, there is now a project in the United States that wants to actually quantify it and address it through leadership by people with HIV. “The People Living with HIV Stigma Index” has been launched in dozens of countries but only now has received funding to implement it in the U.S. It measures HIV stigma in the lives of people with the virus, and does so by training and employing people with HIV themselves to conduct the surveys. Watch a video of Laurel Sprague of the Global Network of People Living with HIV discussing stigma and this project with Eric Sawyer of UNAIDS.
Tags: Aging, aids, culture, gay, help others, hiv, physician, politics, research, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 3 Comments »
Thursday, November 21st, 2013
Lesley was my closest friend to become sick in the 1980′s, and he fought bravely until his death from AIDS. Today, there are little rituals I have to honor his memory, and I often write about him, the first of many friends lost to the epidemic.
But there’s something I will not do. I will not dig up Lesley’s body and beat young gay men with his corpse. Lesley didn’t perish so I could use him as a scare tactic. He wasn’t a cautionary tale. He wasn’t a martyr. He was a man with the same passions and faults as anyone else, and I won’t use his death as a blunt instrument.
Plenty of us are more than happy to rob graves, however, in an attempt to frighten gay men into acceptable behaviors. This kind of horror-by-proxy happens all the time. Concerned but misguided gay men of a certain age hear whatever the latest HIV infection rates are, and they pull the AIDS Crisis Card.
“If their friends all died like mine did, maybe they would think twice before having sex without a condom,” goes a typical remark, drenched in self pity and tenuous logic.
This statement misrepresents our lost friends and oversimplifies the state of HIV today. It projects our grief in the direction of those who bear no responsibility or resemblance to what we experienced. It subtly blames our departed friends for their mistakes, and then tries to equate them with a new generation of gay men who are much too smart to buy into it.
So frozen in time is our victimhood, it hardly allows for the facts of the here and now. Young gay men are more aware of HIV than my generation ever was. They simply relate to it differently, having come of age since the advent of successful treatments. Asking them to fear something they have literally grown to accept is as realistic as asking them to perform “duck and cover” drills in case Russia drops the bomb.
To view these young men and say, in effect, “if only you saw all the death that I saw…” is a wishful fantasy that disturbs me on all sorts of levels, and it says far more about us than it does about them.
I understand these attitudes come from a place of complicated emotions, ranging from grief, primarily, to our own shame or guilt over dodging a bullet — and it may come from a sincere need to share our experience with others. The punishing tone that often accompanies it, though, isn’t going to win the respect or investment of younger men. It makes us as relevant as old men on the front lawn waving a rake at youngsters.
I take our community history very seriously. I’ve written a book about the dawn of AIDS in Hollywood, have read And the Band Played On more than once, cheered on the activists in the documentary How to Survive a Plague, and can’t wait for the release of Sean Strub’s upcoming AIDS memoir, Body Counts. There is enormous value in preserving our history — and in recognizing that many of us still carry trauma born of that time.
Community advocates have stepped up work to help us process what we went through a generation ago. Post Traumatic Stress Disorder (PTSD) is a very real phenomenon for longtime survivors, and excellent community forums have been mounted to explore these areas by the Medius Working Group in New York City and the “Let’s Kick (ASS) AIDS Survivor Syndrome” project in San Francisco. Hopefully, other cities and LGBT organizations will follow suit.
That important work is quite different, however, from allowing our past to blind us to the present. When we raise our finger and say in a voice filled with foreboding, “people think you only have to take a few pills and that’s it,” we are denying the actual experience of a lot of people with HIV. For many like me, taking a few pills a day is, in fact, the only impact HIV has on my life. Research suggests I will live a normal lifespan and am more likely to die from cigarettes than HIV. And I’m not going to deny all that in order to advance a fright-show storyline that isn’t my experience.
There are young voices telling new stories, thankfully. Gay writers living with HIV such as Patrick Ingram, Josh Robbins, Tyler Curry, Aaron Laxton, Robert Breining and the irascible Josh Kruger are peering across the generational divide (I have HIV antibodies older than they are) and they seem bemused. Their blogs suggest a post-AIDS life of full engagement and purpose. I consider this progress. If their lives (and writings) don’t include burying friends or serious health concerns, wasn’t that our goal all along?
Nowhere has our AIDS tragedy mindset done more damage than in the rollout of the unfairly maligned Pre-Exposure Prophylaxis (PrEP), the prevention breakthrough that allows HIV negative people to take anti-HIV medication to avoid infection. It is largely viewed as an alternative to condoms, which has quickly labeled HIV negative men taking PrEP as “barebacking sluts” by people coming unhinged at the very idea of unprotected sex. (Note: I remember when gay sex never involved condoms. It was glorious. I always thought getting back to a place where we had a real choice in the matter was kind of the point.)
There is something about the simplicity of PrEP (a pill a day! no condom negotiation! no guilt or judgment!) that is driving older gay men up the wall, considering their resistance to it and spurious claims of inefficacy, cost, and side effects. Tellingly, younger gay men have voiced fewer objections.
The facts are these: PrEP is at least as effective as condoms when used properly. The drug currently used for PrEP, Truvada, is well tolerated with few side effects. And despite fears and misinformation, it is being covered by insurance providers (do you know of even one claimant that has been denied?). For those without insurance, Gilead, the maker of Truvada, has a generous patient assistance program that allows you to earn a sizeable income and still get the medication.
Perhaps, in the end, we are simply victims of our own success as advocates. We successfully entrenched the immediate, mortal danger of HIV, the shameless inaction of our government, and the profit-driven, opportunistic role of the pharmaceutical industry. Anything that veers from that narrative, especially for those of us who lived it, feels like betrayal. Yet here we sit, in an age that confounds so much of what we once knew to be true.
The 1980′s are history. They are not a prevention strategy. The war as we once knew it to be, the one Lesley and so many others fought so valiantly, is over.
May they rest in peace.
My friend and early mentor, Eric Rofes, was an out, gay, kinky, deep thinking anthropologist that wrote the important book Reviving the Tribe, about building community among gay men during the AIDS epidemic, and Dry Bones Breathe, his follow-up work. He was one of the first to write about the value and even spiritual importance of anal sex for gay men and even exchanging bodily fluids (when he said as much at a forum for gay men in Atlanta I organized in 1995, it was as if a bomb went off, such was the hysteria). For a thoughtful overview of Eric’s work and influence, check out a piece from Charles Stephens about the Rofes legacy — and where his worked wasn’t fully realized. Whenever I fear my writing might seem provocative, I think of Eric Rofes, his bravery, and his lasting influence on the work of many of our leaders. Eric died far too early in 2006 of a heart attack. (Photo credit: Markichester.com)
Tags: A Place Like This, aids, barebacking, culture, gay, hiv, physician, serosorting, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 32 Comments »
Tuesday, September 3rd, 2013
Why Andy Cohen isn’t badgering me with phone calls to bring this series to Bravo, I’ll never know.
Nearly four years ago, I invited four friends living with HIV over to my place for a night of devouring brownies and sharing secrets, while my friend Charles captured it on video. The result was “You Gotta Have Friends,” the first episode of what would be renamed “The Real Poz Guys of Atlanta.” The second episode was posted more than a year later (you can see a recap and both previous episodes here). And now, episode three.
These guys must be getting the hang of this, because we discussed and revealed things like never before. From crystal meth addiction to our mothers, nothing was off limits. There’s even a (NSFW-ish) chat about tops and bottoms and modern gay sexual politics. And dealing with loss. And reaching out for help when you really need it.
I’m not going to lie, I’m proud of this video. It’s clear that my editing skills have improved since our first episode along with the group’s ability to keep it real. More importantly, the video series represents a lot of issues I feel passionately about – combating HIV stigma with honesty about our status, the crucial importance of social support, and living joyfully. That, and I love hearing my friends talk dirty for a good reason.
I really hope you share this one with your friends and networks (select one of the share features below). I think it represents what this site does best. And judging from the emails I receive, there’s a real need for people with HIV, particularly the newly diagnosed, to know that life, and friendship, doesn’t end with a positive test result.
I look forward to your comments! Thanks for watching, and please be well.
(The Poz Guys pictured above are (left to right) James, myself, Antron, Eric, and Craig. I’m the only one who isn’t single; I know they would appreciate me mentioning that.)
Our friend Jeff Berry from Positively Aware has announced the fourth annual “A Day with HIV” photo campaign, and this project is so cool – and so damn easy to participate in – that I tramadol dosage for dogs want to challenge you to just do it. It works like this: they collect photographs and captions from hundreds of people from a single day, Saturday, September 21, to help the world better understand the trials and triumphs of living with HIV. Some are artsy, some are simple photos (like the 2012 submission from Jason Zupke at right). Select photos will appear in the November/December issue of Positively Aware, and all of the photos submitted will appear on the campaign’s website. Give it a click to find out more.
If you are anywhere near Atlanta this October 13, would you like to join me in my role as a Grand Marshal for the Atlanta Pride Parade? When I learned of this honor recently, I knew I needed to share it with friends like you or else my ego might blow my head open halfway down the parade route. I’m asking people living with HIV and our allies to walk beside my car (I’m hoping for a red convertible!). I would love a message of solidarity and support for people with HV, and anti-stigma messages like “I love my Poz boyfriend!” and “HIV Educated – UB2.” The first 20 people to show up will get a free HIV POSITIVE t-shirt provided by AIDS Foundation Chicago. I’m excited to already have the support of The Stigma Project and the CDC’s Let’s Stop HIV Together campaign. To get the latest details, go to Facebook and join the My Fabulous Disease page. See you then!
The United States Conference on AIDS (USCA) is in New Orleans this weekend. I love this conference, because it provides skills building for people working on the front lines in community based organizations and public health — exactly where I spent a lot of the early years of HIV/AIDS. Anyway, I’ll be video blogging from the event and providing you the sights, sounds and people who are making a difference. If you happen to be there, please join me for a panel presentation this Sunday morning at 10:30am, when those of us participating in the CDC’s “Let’s Stop HIV Together” campaign discuss living with HIV and our commitment to HIV prevention.
Tags: Aging, barebacking, culture, family, gay, help others, hiv, meth, physician, recovery, Recreation, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 3 Comments »
Friday, July 26th, 2013
“Did I ever tell you about the night that Emil died?” my brother Richard asked me. It was 1992, and AIDS had taken Richard’s lover a full three years earlier. The death ended a love affair that had lasted more than a decade.
I cocked my head. “Well, I was there, Richard, so I mean – ”
“You were there after,” he said, and downed his drink. “Don’t you wonder what it was like just before?” He asked the question nervously, a perfect match for the cigarette he held in one hand — a long broken habit, suddenly resumed — and the cocktail in the other, which had been requested shortly upon his arrival to my apartment.
“It’s not like I was trying to keep it from you, Mark,” he said, and he offered the glass for replacement. It was an odd thing for him to say.
I walked to the kitchen and unscrewed the vodka bottle, beginning to feel nervous myself. Richard talked as I cracked an ice tray.
“Emil had one of those lines that went way in inside him…” He was beginning a story I wasn’t sure I wanted to hear.
“A hickman,” I said.
“Yeah,” he answered, and he reached for the drink while the ice was still twirling. “But something was wrong with it the night before. It was swelling. So we took it out.”
I returned to the couch. Richard paced.
“The next morning the nurse came and Emil was being stubborn. He didn’t want the new Hickman.” He gulped his drink and took a breath. “I got an inkling what he was up to when the nurse said ‘Emil, starving yourself is not a pretty way to go.’ But Emil kept saying, ‘no, no, I won’t do this!’ and I remember he looked so weary, Mark. Just exhausted.”
This isn’t the visit I planned, I thought to myself. I meant for my brother to see the new ceiling fan I had installed. But my handiwork couldn’t compete with the story that was now rumbling out of him.
“I walked the nurse out and went back to Emil. He reached up for my hand, and he said, ‘you knew that today would be the day, didn’t you?’”
Richard looked at me but didn’t acknowledge what must have been a growing expression of shock on my face.
“I knew Emil wanted me to say yes, so I did. But inside I was screaming ‘NO! NO!’ ”
Richard stopped, and I found the silence torturous. “Well,” I said, “it sounds like he was, uh, in charge of himself.”
“Oh, he was in control all right,” he responded. “He told me to go get the book. The one about how to kill yourself.”
Richard’s next few remarks would be lost on me. I couldn’t get past The Book.
“So I’m reading him the chapter we had picked out,” Richard was saying, “and it suggests washing down the pills with alcohol. We had some Seconal and I found some Scotch.”
I knew about assisted suicide but had never heard of the mechanics of it firsthand, or considered the logistics a caring lover would undertake — or had witnessed the haunted result like the one that now sat chain smoking across my living room.
“I made some toast for him just like the book said,” he continued, “and while we waited for him to digest the toast I opened the capsules and put the stuff into a glass.”
I imagined my brother sprinkling powder into cialis soft tabs a glass while Emil looked on. I wondered what kind of small talk that activity encouraged.
“I poured the scotch, a couple of good-sized shots, and he wanted it right away.” His voice trailed to a whisper. “I wanted him to wait, to wait, to wait… I wanted to hug him. I wanted to do it right, you know? But he kept reaching for the glass, and I would say, ‘no, Emil, wait, please wait, I want to say I love you again…’”
Tears were filling Richard’s eyes. His hand shook, knocking his glass loudly on the coffee table as he set it down and brought his hands to his face.
And even so, he went on.
“Emil downed the glass in one gulp and made a face, and then he just laid back on the pillow. It took about twenty minutes.” Richard looked up at me and managed a sad grimace. “Emil always said that when you go, you go alone. I hated that for him. I wanted him to feel me there, you know? So I held his hand real tight…”
I stared at my brother. Tears now streamed from his face. His eyes conducted a dazed search around the room as they tried to focus on something, anything that would bring some comfort or clarity.
I couldn’t tell what I was feeling about this. Was it pity? Was it shock? How many kinds of pain can we distinguish within our soul?
“The book said to wait twenty minutes after his heart stopped, you know, before calling the doctor. I kept leaning over him and trying… trying to hear his heart. But I couldn’t because my own blood was pounding in my ears! And those next twenty minutes…”
“What were you doing…” I asked, startled by the sound of my own voice, “during those twenty minutes?”
“Screaming,” he said simply.
Silence engulfed my apartment, surrounding the word.
I put my arm around him and he continued to weep. Please be all right, I thought. Please be happy again, Richard. My brother. My brother.
He received my embrace but his heart had taken distant refuge. It had long been numbed by the effects of the spent cocktail glass, sitting impassively on the coffee table, occasionally clinking with the sound of shifting, melting ice.
This post is adapted from A Place Like This, my chronicle of life in Los Angeles during the dawn of the AIDS epidemic. (Photo above: Richard, left, and Emil in 1986.)
Suicide was a common feature of life for gay men in the 1980’s. But rather than it being a result of bullying or despair, with which it is often associated today, it was very often a gesture of empowerment for embattled AIDS patients wanting to die on their own terms, sometimes with the assistance of those who loved them most.
Our elderly have always shared these mortal intimacies. Assisted suicide has even been institutionalized with the common use of a morphine drip in hospitals and hospices, which calms the patient and, when increased to certain levels, hastens death by shutting down the body.
As for Richard, he has recovered from his loss 25 years ago and lives happily today in our home town. “I often think of that night, and consider my feelings about it,” he told me recently. “I can honestly say I don’t feel even a twinge of guilt. I have plenty of regrets, but not about that.”
Monday, June 24th, 2013
My first “AIDS job” in 1987 was at the first AIDS organization in Los Angeles, LA Shanti, and we provided emotional support to clients with AIDS who were usually in their last weeks of life. The intimacy our trained volunteers experienced with the dying, helping them find some inner peace as they left us, is worthy of its own blog posting sometime. Let’s just say it was intense.
We hoped for a cure early on, and then our hope faded. Before long, we didn’t dare hope any longer. We just wanted treatment to ease the suffering and slow the dying, and those prayers were answered in 1996 with the advent of protease inhibitors. It seemed greedy to tempt the fates and begin asking for a total cure again.
But greed isn’t what is driving the treatment advocates you are about to meet in my latest video blog. Far from it. They have faith, based on scientific research and some hopefulness of their own, that a cure for HIV disease can be found. And they care enough about our community to keep pressing the issue at HIV research conferences.
They are cautiously optimistic. But their faith is contagious, if you’ll pardon the choice of words. And they also know that that we got protease inhibitors because of the same kind of tireless community efforts that they are displaying now.
In fact, one can easily connect the dots from the activists shown in the Oscar nominated documentary How to Survive a Plague to this current crop of treatment advocates who are trying to take HIV research across the finish line.
You can take part in all of this, of course. To volunteer for a clinical trial or see what might be happening in your area, visit ResearchMatch.org or ClinicalTrials.gov. If you’d like to join the advocates in their work or follow their progress more closely, check out the AIDS Treatment Activists Coalition.
I’d like to thank the always resourceful Nelson Vergel for gaining me access to a gathering of these community activists. For updates of current cure research, Nelson has excellent posts on TheBody.com like this one.
I’d like to thank those who participated on-camera: Jeff Berry from Positively Aware, Jeff Taylor of the AIDS Treatment Activism Coalition, Moises Agosto of the National Minority AIDS Council, Steven Wakefield of the HIV Vaccine Trials Network, David Evans of Project Inform, and poz activists Mark Hubbard and Matt Sharp.
Thanks for watching, and please be well.
Sunday, March 24th, 2013
I have some amazing friends for you to meet.
Beginning two years ago, TheBody.com asked me to produce a series of videos (“A Day in the Life: Keeping Up With Your HIV Meds”) that would profile a person living with HIV, what their day looks like, and how their medication regimen fits into their daily routine. It was a great opportunity to highlight the everyday lives of people living with HIV, but also to let their spirit and passions come through, and show we are whole people — not simply the virus.
The profile subjects came from all walks of life, in various cities around the United States, and their personalities and interests — their families, their hobbies, and even how they became HIV positive — were all I needed for inspiration.
Below are the eleven videos that have been produced to date for the series (an ongoing feature on TheBody.com and they also have an entire resource center about keeping up with your meds). You can watch the videos here, or follow the link in the title to view the post as it appeared on TheBody. They are each less than ten minutes long; just scroll through them below and find a story that sounds like yours — or better yet, hear what the journey of someone completely different from you is like! Are you ready?
Damaries is from South Florida and could not have been more lovely; we laughed a lot during our day together. Her strength is what impressed me most: she did not come to the decision to start HIV medications lightly. She really did her research before she began a regimen. Filming her story was also a great excuse to hit the beach, since she loves to find her peace and tranquility on that gorgeous sand.
Well, first of all, Tree is adorable. So there’s that. He also has an equally adorable dog, who tried mightily to extend his few minutes of fame by sneaking into the camera shots and barking woefully from the other room. For his part, Tree does a great job explaining how he kept his medication regimen despite multiple moves and even being homeless for a brief period. I really like the Brooklyn montage of Tree’s neighborhood at the beginning of the video.
What an elegant woman Eva is. She was so gracious during our day together and had an almost regal sense of self. She really impressed me. Not only did she make peace with the man who infected her many years ago, she became an advocate for all women living with HIV and devoted quite a lot of time to volunteer work. She’s also an avid traveler — I’ve never seen so many magnets from exotic places on one fridge in my life.
What a hoot! Robert (Bobby) Darrow and I were childhood friends, when we both performed in community theater together in Shreveport, Louisiana (we were both newsboys in Gypsy, for all you musical theater queens). As we grew, he always got the good parts and I ended up working the spotlight — shining it on him — but I’m not bitter, I swear! Producing this video was a great chance to honor my lifelong friend for the activism he has done since the beginning of the AIDS epidemic. And it also allowed me to honor theater itself, and how Bobby is now back in the very place he and I so loved when we were kids. This one is special to me.
You’re going to be blown away by the strength of this woman’s convictions — and the strength of her marriage. Brooke learned she was HIV positive during her pregnancy, and not only was her husband completely supportive, he stood by proudly as Brooke became a visible advocate for woman’s health, the importance of HIV testing, and their personal struggle to afford HIV medications so that their baby would have a better chance of being born without HIV. And speaking of babies, guess who steals the show in this video?
Khafre was one of the most immediately spiritual people I met during this series. He has a very strong sense of faith and a commitment to his own spiritual principles. He was also in the midst of organizing a fund raising bike ride across the country to benefit HIV/AIDS services for people of color, and I admired his dedication and pure energy. The time he devoted each day to prayer and meditation was really lovely to observe and capture in the video.
Petra & Efrain could give the other couples in the series a real run for their money for the title of Most Romantic. You can’t help but grin, watching Efrain describe seeing his future wife for the first time at an AIDS conference, where both were community advocates and both were living with HIV. They not only lift up one another during the frustrations of HIV life, they know how to take time to love and enjoy one another, as their salsa demonstration clearly shows.
Tales of triumph over adversity don’t come more dramatic than the story of Fortunata. Not only is she the single, proud parent of a gorgeous daughter (the apple doesn’t fall far from the beauty tree), she had a devastating accident when she was hit by a car walking across the street — and then had to manage her HIV meds along with a host of others while she recuperated. The fact that she relates all this with such grace was amazing to me. I had so much footage of her simply looking ethereal and lovely, the video could have been twice as long.
Anyone who follows my blog — or HIV/AIDS advocacy — knows what a gift Nelson is to our community. He’s been our own Jack LaLanne of HIV, teaching the importance of health, exercise and nutrition since the beginning of the epidemic — the video blogs he did with me on nutrition (where he cleans out my fridge) and exercise (where we hit the gym together) are hilarious and very informative. And, of course, he has a hot body. It might come as some surprise, then, that he’s very modest when it comes to showing it. I had all sorts of shots and angles I wanted to do that would have shown of his physique, and he politely demurred. He also was always focused in our interview on what would apply to regular folks living with HIV, rather than the more privileged among us. In other words, the man is a class act, with a humility that speaks volumes about his integrity and commitment.
I’ve been watching Robert grow as an HIV/AIDS advocate for several years now, since he began POZIAM social network and radio show while still in his twenties. I had fun doing the fast cuts that open his video because I thought it captured the sense of motion and vitality he has. When I become disheartened, wondering where are the next generation of activists on the scene, I remind myself there are people like Robert.
I’ve always been open on my blog about being in recovery from drug addiction, and George — who survived 27 years of street drugs — and I had an immediate connection. He devotes his life today to service for others, whether it is at an AIDS agency or through various addiction activities. In fact, something he said about his recovery during our interview really made sense to me, and I stopped the camera and shared some of my own story. For nearly thirty minutes he let me pour out some of my own fears and challenges, and listened with the attention of a man who has been there. I think his spirit is well-represented in this video.
To watch George’s video, just follow this link to TheBody. This video is so hot-off-the-presses that I’m not able to share it here yet. Follow the link and hear his story.
I learned a lot of each of these people, and I know they represent a tiny fraction of the courage and daily fortitude displayed by people living with HIV every single day. I really want to thank this group for taking me into their homes and lives and allowing me to share their stories with you.
Thanks for watching, and please be well.
Tags: aids, gay, help others, hiv, lipo, physician, recovery, research, Sexuality, testing
Posted in All Other Video Postings, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 1 Comment »
Thursday, January 24th, 2013
For several years now, I’ve made the occasional pilgrimage to Vero Beach, Florida, to be treated by Dr. Gerald Pierone for facial wasting, or lipoatrophy. And for all of these years, we have battled The Look: the sunken cheeks and sagging face of someone who has been on HIV medications for a long time. In my latest video blog below, you’re going to see our progress, step by step.
It was all well and good to be front-and-center as an HIV-positive man during the first years of the AIDS crisis. It’s easier being a role model when your face looks good on the poster. But my dismay over the telltale wasting that began to appear on my face surprised me, and it pitted two strong emotions against one another: my pride in being a longtime HIV/AIDS survivor, and my shame for looking like one. I’m only human.
There is an emotional component to facial wasting, because it forces us to address our own vanity, as well as the very real, physical results of HIV medications, which often affect people who have had no other manifestations of the disease. I’ve tried to address these issues in past blogs, but to be honest, I have put more time and effort into just trying to wipe the AIDS right off of my face.
For my earlier treatments, Dr. Pierone used Sculptra and Radiesse, both effective but temporary solutions to facial wasting (results vary, but typically last somewhere between six months and two years).
Beginning with my last appointment a year ago (shown in a previous video blog), Dr. Pierone began using Artefill, a more permanent filler product (Dr. Pierone wisely does these treatments in careful stages). But, because Artefill is not FDA approved specifically for facial wasting (it is approved for cosmetic use), it cannot offer the same kind of patient assistance programs as the ones offered by Sculptra and Radiesse. New studies are underway now to show what we already know: Artefill is safe and effective for facial wasting. Once approved for this purpose, one can assume the manufacturer will join the patient assistance bandwagon.
Thanks for watching, and please be well.
(It’s worth mentioning that I do not receive promotional consideration from the makers of any of these products. I’m simply sharing my experience with facial wasting, and I’m sure that “results may vary,” as they say. — Mark)
Wednesday, January 9th, 2013
My fear of all things anal began when I was an early teen. My older brother David took great delight in bursting into our bathroom to startle me, especially if I was on the john. And, since I was a pubescent redhead, his sudden visits included a lot of laughing and pointing.
I was mortified beyond belief. To this day, I must be sure no one is in the house, and then close and lock the bedroom and bathroom doors before I can properly relax. And I live alone.
But you can’t avoid everything anal if you’re growing up gay. Not if you want to do the really fun stuff.
I discovered soon enough that if someone had serious intentions in regard to my backside, I couldn’t simply rely upon a bran muffin and a Hail Mary to be properly prepared. God forbid I would, you know, not be… well, you know. This ongoing fear had a habit of wrecking the mood and the evening.
My exclamations during sex were usually panicked calls to turn the lights up, so I could carefully inspect the situation. Or a plea to stop altogether. “Okay, that’s fine, no wait!” I would cry out. “Am I okay down there? I mean, is it… okay go ahead… no hold on! Are you sure I’m…?” I was usually so involved with my protestations that I would hardly notice my date gathering his things to leave.
There are cleansing products meant to address this situation, but they require a certain comfort level with your own body and a little patience, meaning, they were incomprehensible to me. But I tried my best.
Drugstore enemas always felt too clinical, like something a nurse should be administering so you could “move your bowels,” a phrase I hope I never have to hear again, much less type.
But never fear. Leave it to gay men to popularize the “shower shot,” a long hose which screws into your shower head and ends in a narrow nozzle, just right for sliding up your bum for a thorough internal rinse.
The modulation of this instrument, however — and I cannot stress this enough — is of utmost importance. Too little water pressure and you’ve got a dribble with little cleansing effect. Too much, and you’ve just inserted a pressure washer into your ass that could peel the paint off a building.
I was first introduced to this contraption in my early twenties, when my first-time date invited me to visit the bathroom to “rinse out” while he relaxed in bed and waited. I stepped in the shower and surveyed the dangling metal hose. I turned on the water. I considered how it all might operate, and I made my best guess, standing there for God knows how long, hose inserted and whistling a happy tune.
I must say in my defense that no one had ever explained the device to me, much less how to gauge the input versus the output.
That poor, unfortunate man. He had really pretty designer sheets, covered with a gorgeous blue and white pinstripe blanket that I can still see clear as day. Such a lovely bedroom. That is, until a few passionate moments later, when all of it was soaked with a solid gallon of spoiled water that had been percolating in my poopchute, exploding from me in a streaming rush that looked like the wake of an outboard motor hurtling across Lake Erie. The word “apocalyptic” comes to mind.
Only as I matured did I realize I had options (and I will now introduce cute baseball analogies to illustrate my point). I discovered I did not, in fact, always have to play catcher, and I stepped onto the pitcher’s mound with great enthusiasm. But as much as I enjoyed the view from above, I worried still, that maybe I wasn’t holding up my end of the bargain. It was only after pitching a near-perfect game one day that my partner in the dugout helped me make a simple decision.
“Mark,” he said. “Why don’t you just stick to what you do well?” And it was this generous assessment that gave me the confidence to hang up the hiney hose forever.
Yes, that’s right. I’m now a dedicated top. I’ll allow you a few moments of incredulous wonderment.
What’s even more amazing is my having a boyfriend who is not only loving and adorable, but absolutely expert at the exotic mysteries of booty sex preparation. It really is an impressive talent, if you ask me. Like walking on your hands, or spinning plates on sticks.
This is all to tell you, dear reader, that sometimes you must find solutions to your fears in order to take care of yourself. And sometimes you have to face your damn fears head-on. I was reminded of this recently when, at fifty-two years old, I had my first colonoscopy. I don’t think I have to explain my anxiety level going in to this procedure.
Everything checked out fine, thanks. I had heard the anesthesia they give you can produce some odd behavior, but other than proposing to the physician and asking the recovery nurse if they located my pet hamster, I behaved myself quite admirably.
The only side effect of my colonoscopy was a bloated feeling and a case of the gurgles. Well, and a few hours later I had the longest, most continuous release of gas I have ever experienced in all my days. I’m talking a minute plus, people.
I really wish my older brother David had been here. He loves that kind of thing.
If I can face my deepest fears, so can you. Did you know that studies show people living with HIV have a higher incidence of “colonic neoplasms” (the polyps they are looking for during a colonoscopy), which should be checked out for cancerous cell growth? Anyone aged 50 should get a colonoscopy, and some protocols suggest that people with HIV start this screening at age 45. Please don’t delay. Call your doctor! (At right, a picture of my happy procedure team just prior to my colonoscopy.)
And speaking of rectal douching (and why not? We really should discuss this topic more, considering it is such a common practice among gay men), I cannot say enough about LifeLube, the blog created by the AIDS Foundation of Chicago to help gay men address sexuality and their bodies. They have an entire section devoted to rectal douching (did you know there are new douches that limit the amount of healthy bacteria removed?) and another feature, Andrew’s Anus, that provides engaging answers to the questions you’re afraid to ask. The blog is no longer active – meaning, no new postings – but there is a wealth of information here and you should definitely check it out.
Wednesday, January 2nd, 2013
“My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague… I miss the man I was forced to become.”
– “Once, When We Were Heroes,” 2007
AIDS did not kill Spencer Cox in the first, bloodiest battles of the 1980’s. It spared him that.
The reprieve allowed Spencer’s brilliance as co-founder of the Treatment Action Group (TAG) to forge new FDA guidelines for drug approval and help make effective HIV medications a reality, saving an untold number of lives.
Such triumph by a man still in his twenties might have signaled even greater achievements ahead. Instead, Spencer found himself adrift in the same personal crisis as many of his contemporaries, who struggled for a meaningful existence after years of combating the most frightening public health crisis of modern times.
Gay activists like Spencer were consumed by AIDS for so many gruesome years that many of them were shocked, once the war abated, to see how little around them had changed. Climbing from the trenches, they saw a gay culture that must have seemed ludicrous, packed with the same drug addictions, sexual compulsions and soulless shenanigans that AIDS, in its singular act of goodwill, had arrested for a decade or so.
They found themselves in a world in which no one wants to see battle scars, where intimacy is manufactured on keyboards and web sites, where any sense of community had long since faded from the AIDS organizations and now only makes brief appearances in 12-step meetings, or as likely, in the fraternity of active crystal meth addicts chasing deliverance in a dangerous shell game of bliss and desolation.
The dark allure of meth, a drug so devoured and fetished by gay men today that it is now a leading indicator of new HIV infections, enticed Spencer at some point along the way. The drug is known to whisper empty promises about limitless power and sexual escape, while calming the addict’s ghosts and sorrows for miserably brief periods of time.
When Spencer Cox died on December 18, 2012, in New York City, the official cause of death was AIDS-related complications, which is understandable if post-traumatic stress, despair and drug addiction are complications related to AIDS.
Spencer believed that this connection exists. His own writings for the Medius Institute for Gay Men’s Health (an organization he co-founded after his work with TAG) focus on exactly the issues that were distressing him personally: Crystal meth abuse. Loneliness. Risk taking. Feelings of confusion after years of accomplishment and purpose.
In retrospect you can read his work and break the private code written between the lines. It spells out “HELP ME.”
Spencer’s life during this period and beyond was difficult, by many accounts. The Medius Institute failed due to a lack of funding, defeating Spencer’s effort to address mental health issues among gay men. His drug addiction spiraled and ebbed and raged again, until he finally retreated to Georgia to live with family for a few years.
When Spencer returned to New York City last September, many of his closest friends had lost track of him. There is uncertainty about his last months, and no evidence that his addiction was active, but what little medication compliance he managed had been abandoned completely, setting the stage for his final hospitalization.
Spencer Cox died without the benefit of the very drugs he had helped make available to the world. He perished from pneumonia, in an ironic clinical time warp that transported him back to 1985. It was as if, having survived the deadliest years of AIDS, having come so close to complete escape, Spencer was snatched up by the Fates in a vengeful piece of unfinished business.
AIDS has always been creative in its cruelty. And it has learned to reach through the decades with the second-hand tools of disillusionment and depression and heart-numbing traumas. Or, perhaps, using the simple weapon of crystal meth, with all of its seductions and deceits.
Yes. There are many complications related to AIDS.
To consider “survivor’s guilt” the culprit behind the death of Spencer Cox is a popular explanation but not necessarily an accurate one. That condition suggests surviving when other, presumably worthier people, did not. Sometimes guilt has nothing to do with it.
For many of our AIDS war veterans, the real challenge today is living with the horror of having survived at all.
(PHOTO CREDIT: Walter Kurtz)
Tags: aids, culture, hiv, meth, physician, politics, recovery, research, Sexuality
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 50 Comments »
Tuesday, July 31st, 2012
AIDS2012 was exactly as I had hoped: an enormous “summer camp” for advocates from around the globe, and I had a blast bringing their stories to you. Let others cover the medical updates and the big name speakers. I wanted to give you a sense of the people who are doing the work on the front lines – with a few bigwig interviews along the way.
Every day I sought out stories I thought would interest you and took a ton of footage (with the help of my talented camera person and schlepper Tina Robles). After a bite of free food from whatever reception was happening, I tried to make it to at least one evening event. And then back to my hotel, where I reviewed the footage, did my best to conceive a theme for the day, and then started editing. I’m quick at the editing part, but it still took 4-5 hours, into the wee hours of the morning. Then I’d sleep for a couple hours and start again. I’ll need the two years between now and AIDS2014 just to catch up!
Here are links and a review of each of the six video blogs I produced during the week. Simply click the title to see the posting and watch the video.
Since less than 5% of the programming for AIDS 2012 is targeting to MSMs (Men who have Sex with Men), a special one-day pre-conference is held the day AIDS 2012 convenes to address the needs and issues of this population.
My report includes a chat with United States Rep. Barbara Lee (right), who has just introduced comprehensive HIV prevention and anti-stigma legislation; the advocates fighting laws that criminalize people with HIV (like Sean Strub and Edwin Bernard), a little social research on Grindr (the gay man’s cruise phone app), a chat with Positive Frontiers editor Alex Garner about getting rejected (and rejected others) during the dating process, and a visit to an AIDS2012 Reunion poz social event.
In this brief video episode from the first official day of AIDS2012 the party is rolling, with an outdoor concert (steps away from the AIDS quilt) featuring Weyclef Sean and Cornel West (!), dancing dignitaries, and a somewhat surprise ending!
The fact is, Day One was a light day, the calm before the storm, as people poured into DC and braced themselves for the busy week ahead. And it was my last chance to get a decent night’s sleep.
I spent some time in the exhibit hall critiquing the fashions (and the issues) of various attendees with fashion maven Jack Mackenroth (poz and proud veteran of “Project Runway”), started a YouTube rivalry with inspirational singer Jamar Rogers (“The Voice,” right), and learned about HIV and aging from an expert with the Terrence Higgins Trust. I also had the chance to speak with the head of the CDC’s HIV/AIDS Division about their new “Let’s Stop HIV Together” campaign, in which Jamar and myself both participate.
And, with all the talk at the conference about the devastating effects of HIV stigma, I found validation of my own HIV status in the unlikeliest of places: the Gallery Place subway station.
Several contingents marched and protested separately throughout the city – marching for housing, and civil rights, and in protest of the pharmaceutical industry’s “intellectual property” policies – and then convened in front of the White House. Whereas the march and rally at AIDS2010 in Vienna was a peaceful affair, our proximity to the White House, the aggressive crowd and the police on horseback all lent an air of old time activism circa 1987.
The people included in the video can speak for themselves, and quite eloquently. Maybe it was the emotions of the event — anger, nervousness, pride — but it was an exhausting day. I felt the residue of grief for lost friends in a way I haven’t experienced in years.
This is my favorite, no doubt, and I’m proud of the visual and audio techniques I employed to give some historical context to the event.
It was time for a tour of the heart and soul of AIDS2012: The Global Village. This massive hall is the only part of the conference open to the public, and it has a grass-roots feel, crafted from the love and devotion of hundreds of community groups who are doing “the work on the ground” in cities and small towns throughout the world.
Thank God I’m a video blogger, because words escape me when trying to describe the colors and displays and most importantly, the committed people behind it all. You’re about to meet drag queens who make their living handing out condoms, sex workers demanding an end to criminalization, young prevention workers from far-flung corners of the planet, a stunning photo exhibit from the Ukraine… the list goes on.
Our little summer camp for global AIDS advocates (and physicians, and commercial interests) had come to a close, and there are images that will be knocking around in my head for weeks to come (and some, forever).
I begin this video with the astonishingly talented performance poet Mary Bowman, a young woman with HIV showing us her heart and soul on stage. It’s a jumping off point for this final, brief video, in which I pay tribute to the people on the front lines who are the very essence of this conference. They are the ones with the “star power.”
This opportunity to share my experiences at AIDS2012 was a distinct honor and privilege, my friends. My deepest thanks to you all for the many cross-postings and shares and tweets. This was a week I will never forget.
Enjoy the videos, and please be well.
Tags: Aging, aids, barebacking, criminalization, culture, drag, gay, gratitude, help others, hiv, physician, politics, recovery, Recreation, research, Sexuality, testing
Posted in All Other Video Postings, Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 5 Comments »