Posts Tagged ‘physician’
Monday, September 29th, 2014
I have twenty staples in my back holding an incision together. It hurts.
Just making that rather gruesome statement leaves me feeling conflicted. Yes, I want sympathy. Yes, this pain has been a constant companion for the last two months, from throwing out my back again to discovering from an MRI that a nerve was being crushed to a serious back surgery and then a slow recovery with more pain than I bargained for.
It reminds me of the 1980’s, when there were so many deaths from AIDS that we couldn’t grieve properly for individuals losses. The problem with living during that time, and seeing such mortality, was that everyone was doing it. There was no room in our aching hearts to feel for them all. And how in the world was I supposed to feel sorry for myself, the one with HIV who was healthy and alive?
Soliciting sympathy is a perilous enterprise. I’m That Funny Guy with HIV. Revealing that I’m hurting and feeling miserable feels like I’m going off-script, that these words don’t belong on this blog, that you’ll see me as self-centered and a whiner, that I’m hurting “my brand” and web traffic will suffer. But mostly, that my selfishness will become apparent, or at least show more than usual.
The self-pity comes and goes, like the muscle spasms, like the ocean of pain that ebbs and flows, like my own attitude toward what has happened to me, or what is yet to come. It’s a kaleidoscope of impatience and gratitude and hope and anger. So I don’t talk about it much or I make light of it and try to keep things in perspective.
During my hospital stays these last weeks, I witnessed true medical emergencies, and saw other patients awaiting care who clearly were more frail, and more afraid, than I was. Meanwhile, I was cracking jokes with the nurses as I was being prepped for surgery and looking forward to the bliss of sedation, as any red-blooded addict in recovery would. I liked the attention, the drama of something serious underway, and how, at least for a few hours, it was all about me.
But then the surgery happened. And it isn’t funny anymore. And I understand the legitimate use of oxycodone. And I can’t put on my own socks.
So, for long periods of time during each day, I don’t care about the suffering of others or the inhumanity of war or the latest HIV infection rates. Because what I am going through right now hurts. And it’s really hard.
And I want a pain of my very own.
It is that very realization, of wanting to hold tight to something shared by no one else, that shatters my selfishness. Because if there’s anything I believe in, it is that we heal and strengthen by sharing our common challenges. Whether it is living with HIV or a death in the family or a breakup, we get stronger when we talk about it.
I have a folder of special emails called my Rainy Day Folder, and in it are messages I have collected over the years. They are from people all over the world thanking me for a posting on my blog or sharing their own stories with me of stigma or fear or loneliness. And during this entire experience of mine, I have neglected to do the very thing for which that folder is intended: when I’m feeling low, read some of the emails and take heart that I’m making a difference by sharing my truth or offering advice.
So, this morning I opened the folder and began to read. And one piece of advice, something I offered repeatedly to others who were experiencing misfortune, stunned me with its precision and irony. “You are going to get through this,” I said, more than once. “And one day you are going to be able to say to someone, ‘I know what you’re going through. I understand. And this is how I got to the other side.'”
Seeing the intersection of hurt and healing in those emails released something in me. The really good cry that followed was about me, and them, and all of us.
And I felt no pain at all.
Update: The staples have been removed, and the surgeon was practically gleeful during our appointment that I am walking nearly normally. He said that during surgery he was alarmed by the nerve damage and he feared for my mobility. So I dodged a bullet, thanks to taking fast action, getting good advice, and walking (or limping) through the experience. Thanks for all the kind messages of support. I’m on the mend.
Monday, July 14th, 2014
(NOTE: My AIDS2014 coverage is exclusive to TheBody.com this year and you can find my daily videos on their main page beginning this Sunday, July 20th.)
Are you ready for a theater piece about HIV that takes place on an enormous bed that doubles as a boxing ring? How about a candlelight march with thousands of advocates from around the world? And don’t forget my favorite — the Global Village, stuffed with art and advocacy from every corner of the planet? All this and more will be part of my coverage of the upcoming International AIDS Conference!
I’m headed down under for AIDS2014 in Melbourne from July 19-25! I’m so excited to be creating exclusive coverage for TheBody, the site that sent me my first camera and said, “just do what you do.” I’m so proud of my association with this tremendous online resource.
To watch my coverage, you’ll have to go to TheBody.com. My whimsical, sometimes emotional reporting will be hard to miss from their main page and should begin on Sunday, July 20th.
In Melbourne, I’m going to leave the clinical data and research to those better qualified. Instead, I hope to provide you with something you might not see anywhere else: the advocates, the people living with HIV from around the world, and the awesome visuals of the music and dance and theater and human drama of the conference.
Are you ready? Let’s go!
p.s. To watch my coverage, just head to TheBody and look for my video coverage, beginning Sunday, July 20th. I hope to post every day!
Tags: aids, conferences, criminalization, help others, physician, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | No Comments »
Monday, January 27th, 2014
“We don’t know the side effects of this drug. It’s too expensive. Insurance won’t cover it. It hasn’t been studied enough. It will encourage slutty behavior. And why the hell don’t people just use condoms?”
– Objections raised to the oral contraceptive progesterone (“The Pill”), approved by the FDA 54 years ago.
When the drug Truvada achieved FDA approval in July of 2012 as a medication to prevent HIV infection among people who are negative (a strategy known as pre-exposure prophylaxis, or PrEP), it’s as if the ghosts of naysayers from the 1960’s rose from their resting places, delighted and re-energized, and began drilling their mid-century objections into the hearts and minds of contemporary society.
Maybe proponents of PrEP like myself believed the response to the drug would be more enthusiastic. Surely anyone who lived through the horror of early AIDS would thank God that a new prevention strategy exists that doesn’t rely upon condoms alone. The fury of the response has been a little startling to me.
Fortunately, Facebook groups and online sites that explain the facts about PrEP are springing up everywhere to address misinformation and to clarify legitimate areas of concern. Here are the most persistent objections to PrEP, and the facts as we know them.
People wouldn’t need PrEP if they would use condoms. They just want to bareback. Studies show that people on PrEP do not have an increase in high risk sexual behavior, but cynics have visions of wanton orgies ahead worthy of vintage gay porn. Alas, what others do in their sex lives is out of our control, whether that drives people up the wall or not.
The facts are these: more than half of gay men do not use condoms or do not use them consistently. This fact has remained true throughout the 30 years condom use has been measured among gay men, including during the darkest years of the AIDS crisis. We can address 50,000 new infections a year or we can have a useless moral debate.
The lack of condom use is what makes PrEP so exciting as a prevention method. The very first large study of Prep was the iPrEX Study, an international study of 2,500 people that was comprised mostly of gay men and some transgender women. The study showed that people who use Truvada as PrEP correctly (taking a pill every day) can have their risk reduced by 90% or more, depending on adherence. Some models show an efficacy rate of up to 99% based on near-perfect adherence.
PrEP is also not dependent on last minute decisions in the heat of passion. Taking a pill in the morning is calmly detached from having sex that night.
PrEP is not necessarily an either/or proposition, because lots of people taking PrEP are also using condoms. But let’s be real. Most people seeking out PrEP already don’t use condoms or they don’t want to use them anymore. Since they are trading one prevention device for something that has a better success rate and is easier to use, what’s it to you?
We don’t know the side effects of Truvada. We have years of data of Truvada side effects on people with HIV (it’s been FDA approved to treat HIV since 2004). Truvada was selected for clinical trials as a PrEP drug because of its favorable safety profile.
It is true that there are some reports of bone density and kidney problems among people with HIV using Truvada as part of their treatment regimen. These side effects have sometimes been serious. We can’t assume the experience of HIV negative people will be the same, and that’s why Truvada patients, positive and negative, should be routinely tested for bone density and kidney function.
More and more HIV negative writers and bloggers (and even a gay porn star) are sharing their experiences on PrEP but, thus far, side effects haven’t been part of their story. Watching them share their progress publicly over time should be quite interesting.
Understanding side effects is part of the assumed risk we take with medications, as any television commercial for a pharmaceutical drug will attest. If you don’t want to cough up blood, for instance, or have bloody stools or nausea or a ringing in your ears, don’t take aspirin. Those side effects are uncommon, and so are the side effects for Truvada.
People taking PrEP also have the option of discontinuing Truvada depending on life events and necessity. Maybe you stop dating the HIV positive guy, or take a break from casual sex, or return to condoms for a while. Starting and stopping the drug in this way does not lead to resistance as long as a medical professional verifies you are HIV negative before restarting.
If you are wary of Truvada side effects, don’t use it. And allow others to make that same determination for themselves.
PrEP is too expensive and insurance won’t cover it. This argument is losing steam rapidly. The Affordable Care Act in the United States is underway and by all accounts every insurance company as well as Medicaid is covering Truvada — although it may require pre-authorization from a doctor for use as PrEP (the CDC has produced a handy document available online to help explain PrEP to your physician).
For those without insurance or money for a co-pay, Gilead (the maker of Truvada) has a patient assistance program that can provide the drug outright or supply co-pay cards worth up to $200 per month. Even if none of this were true, the potential benefits of a drug should not be assessed solely by its price tag.
The people who need it most can’t access it anyway so what’s the point? It’s a good thing we don’t have this attitude towards condoms. Access isn’t the same as efficacy.
But it is certainly true that young gay black men, whom the epidemic is affecting in shocking numbers, have less access to healthcare. This is a systemic problem and it is unfair, frankly, to expect PrEP to solve it. It is also true that PrEP can be an occasion for HIV negative people to seek care, and once on PrEP they are typically required to have medical follow-ups throughout the year, which offers obvious benefits.
The biggest hurdle is often physicians themselves. HIV negative people may have a doctor unfamiliar with HIV care, much less PrEP, and those doctors are often intimidated by what they see as the complexities of HIV treatment. Until more professional education is done, potential PrEP users must learn to advocate for themselves and share CDC recommendations with their doctor.
People won’t adhere to PrEP and that will create resistant strains. It is true that in some early PrEP trials adherence was a problem. Real life behaviors, though, differ from clinical trials in some important ways.
Trial participants have no idea if they are taking the actual drug or not, and in trials the efficacy of the drug hasn’t even been proven. So, the commitment of trial participants to stay adherent to the drug is less rigorous than users today, who know that the drug works, know they’re getting the real thing, and are invested in remaining HIV negative. People taking PrEP today have more skin in the game, as it were.
For those who do miss the occasional dose, Truvada is somewhat forgiving. The protective ability of the drug doesn’t drop if you miss a single dose because Truvada remains in the blood for up to 72 hours (compare that to missing a condom occasionally, which CDC statistics show to be as risky as never using them at all). That being said, it is optimal and recommended that Truvada be taken consistently each day, and users should take seven daily doses for Truvada to achieve optimal protection.
Taking Truvada alone when a PrEP user doesn’t know they are already positive can lead to resistance and significantly reduce treatment options. Resistance has not been found with individuals who were verified HIV negative at the time they started Truvada, but it has happened in people who became HIV positive due to low adherence.
PrEP is just putting money into the pockets of pharmaceuticals when we have cheaper solutions. I can’t imagine anyone telling HIV positive people not to take their medications because their drugs are making profits for Big Pharma. The argument that HIV negative people aren’t worth a fraction of that investment astounds me. I suppose we should wait until negative people get infected before it’s okay for them make a profit for the drug companies.
And those are the facts as we know them about PrEP. I have no delusions that the debate will calm any time soon, of course. Human nature is far too predictable for that.
Just recently, politician Mike Huckabee addressed a gathering of fellow Republicans. Part of his remarks, delivered half a century after The Pill was approved for contraception, was his belief that “smart” women don’t need the government “providing them a prescription each month for birth control because they cannot control their libido.”
Right. Because birth control, as critics have been saying since 1960, would be unnecessary if women only showed some restraint and didn’t behave like barebacking sluts.
Everything old is new again.
My thanks to HIV advocate Jim Pickett of AIDS Foundation Chicago for his expertise on this issue. Jim is active in the development of rectal microbicides (lubes and douches that kill HIV on contact). Damon L. Jacobs, who writes about his personal experience taking PrEP, also served as a resource.
Thursday, January 9th, 2014
In the summer of 2013, thousands of subscribers to Nelson Vergel’s “PozHealth” listserv received a startling email from the HIV positive fitness and nutrition expert.
“You are probably wondering why I have been so quiet the last few weeks…” the message began. Vergel, a trained chemical engineer who devoted himself to HIV treatment advocacy after testing positive in 1985, had a troubling explanation for his online absence. A diagnosis of cancer.
“It took me months to come out to the poz group,” Vergel said about revealing his diagnosis to his listerv. “It was a struggle for me.”
Vergel had begun the group in 1999 when lipodystrophy was a hot topic among people with HIV/AIDS and they needed a place to compare notes, and it has since become the largest treatment information listerv for people living with HIV. It still thrives at a time when the exchange of HIV treatment information among peers has waned.
The success of the group perfectly reflects the dedication of its host, a gay bodybuilder whose own serious struggle with AIDS over the years belies his appearance of physical strength. Group members clearly admire Vergel and see themselves in his medical challenges and triumphs.
So it was with some trepidation that Vergel revealed a new health crisis to the group, one that forced his HIV to the back burner. “I was very concerned that people might panic, not about me, but themselves. I didn’t want them to think this applied to them,” Vergel said. “I really was more concerned with them projecting my challenge onto themselves.”
He had little choice, however. His condition was serious.
In June, Vergel was experiencing stomach problems that doctors initially believed to be ulcers. Then came a diagnosis of H Pilori, a stomach bacteria. Vergel requested an upper GI endoscopy, during which ulcers were found and biopsied. While treatment with antibiotics killed the bacteria, the news from the biopsies was grave: Vergel had a aggressive brand of cancer known as non-Hodgkins lymphoma.
“I was shocked,” said Vergel. It wasn’t the feeling of impending death he had experienced when he tested HIV positive in 1985, but something more incredulous. “It hit me really hard. I had been preparing for heart attacks, or anal cancers, which I have checked every year. I was controlling those high risk situations. But this…?”
Despite the cruel irony of battling mightily against one disease and then facing another, it didn’t take long for Vergel’s instincts as a treatment advocate to take hold. “After I got the news, I got into my car and cried a little,” he said. “And then, before I called my partner, I got on the phone and did a Google search.”
His research confirmed the treatment plan of chemotherapy that his doctor recommended, but he soon discovered that cancer healthcare isn’t nearly as accustomed to empowered, involved patients as is the world of HIV.
“I realized how behind oncology is from HIV,” Vergel said, “because there are fewer online resources for patients. It felt like early HIV. They don’t discuss side effects until they happen to you. I kept finding out things randomly. It made me realize how good we have it in HIV. In oncology all they care about is killing the cancer. But part of the goal should be protecting the patient from side effects.”
His treatment as a patient was often the antithesis of what he has advocated for HIV patients for decades. That advocacy, and Vergel’s influence in crafting programs to empower HIV patients, is considerable.
Vergel educated himself on HIV pathology and medications after his HIV diagnosis, and became involved in several national health commissions, leading to his founding of the Program for Wellness Restoration in 1994. Because of his interest in physical fitness, he pushed for federal funding for studies of anabolic steroids and promoted results of earlier studies that showed that once you reach 55% of lean body mass, your chances of survival drop precipitously.
He was convinced that resistance training, nutrition and supplements are a key weapon against HIV. His 1998 book, Built to Survive, found a place on the shelf of nearly every gay man who had HIV and a gym membership.
For better or worse, the image of muscled gay men with HIV that emerged in the 1990’s, pumped up from weight training and anabolic steroids, can be directly attributed to the seminal work of Nelson Vergel, who trumpeted the importance of lean body mass in fighting HIV infection and maintaining a healthy immune system.
Unfortunately, his own HIV has been multi-drug resistant, and Vergel is currently on the last available regimen to treat his disease. The clinical expression for patients like him is “treatment failure.” Vergel hates the term.
“Being called a failure sends the wrong message to patients,” he said. “and I have been trying to change that language in the treatment world. It’s demeaning to patients who are adherent.”
As his cancer treatment progressed, other differences between his two health crisis emerged.
“A good friend of mine was diagnosed with cancer the week before me. He said, ‘I have neighbors cooking for me. Doing my laundry. Isn’t it sad that I could never disclose my HIV, but I can disclose this and everyone rushes to help? This is a diagnosis that my community can get behind. Isn’t it sad that HIV isn’t the same way?'”
The good news is that, unlike Vergel’s history with HIV medication, the cancer treatment seems to have worked.
“There is no cancer based on my last biopsy,” Vergel said. True to form, Vergel made the decision himself to stop the rounds of chemo early because he was concerned with its effect on his immune system. But he remains vigilant. “You are never cured of cancer. Like HIV, you have to keep an eye on it.”
The last six months have been “the most intense of my life,” he said, but it has also included signs that life, and joy, can go on. Vergel and his longtime partner were married in Washington, DC, on September 21.
“Always enjoy the moment,” Vergel said. And then he adds an observation for those living with HIV. “Apply what you have learned in HIV and take control of your own health, no matter what the diagnosis. Oncologists are not used to seeing patients like us. Long time HIV survivors have many years of experience dealing with the healthcare environment, we have gathered lessons on second opinions, questioning our doctors, we’re relatively young and healthy and have learned a lot of skills.”
Today, Vergel is again busy posting to his POZHealth listserv, offering advice in TheBody.com’s “Ask the Experts” forum, and he just founded a new men’s health program, ExcelMale . Even the hair he lost during chemo is growing back.
“I didn’t know how resilient I was until I went through this,” Vergel says, and then there is a thoughtful pause. “Resilience. I like that word.”
Some of the most popular My Fabulous Disease videos have shown Nelson trying to whip me into shape. “Fitness Stud Nelson Vergel Raids My Fridge” is hilarious and informative, “Hitting the Gym with Fitness Expert Nelson Vergel” benefits from his tight tank top, and “The Hard Facts on Erectile Dysfunction” offers advice on, well, you know (and opens with us in bed together). Check them out!
Monday, December 30th, 2013
The year 2013 was a game changer for My Fabulous Disease, and I want to thank you for your clicks, comments, and shares. I have more confidence as an advocate and a writer, thanks to you, and traffic for this blog more than doubled over last year!
I’m bad at predicting which posts might resonate with readers. My philosophy has always been, “if you build it they will come,” and the rest is up to you. Apparently you have very eclectic tastes, my friends.
In ascending order, the Top Ten Postings of 2013 are…
10. The Inspiring Advocates of the 2013 United States Conference on AIDS. This is a rollicking video recap of the annual event, produced by the National Minority AIDS Council, that brings together the very best our HIV/AIDS service community has to offer. Public health and pharma are there, of course, but I’m always thrilled to meet those who are doing the work on the ground, for local community-based organization working with scant budgets but tons of heart. This video includes a discussion about the generational divide among people with HIV, interviews with multiple movers and shakers, marching bands, and Mardi Gras pageantry.
9. An AIDS Death in the Family. Drawing from my book, A Place Like This, I have revisited the night my brothers’ longtime partner died from AIDS, and the surreal haze that surrounded the occasion. It is about loss, yes, but also about how we cling to social habits during the darkest of times to attempt to normalize things that feel anything but normal. A dying man offering a “parting gift” to me, conversing as if he won’t be gone in a few days, and the dreadful phone calls that a grieving lover must undertake. Yes, it’s rough. But it’s life… and death.
8. Two Minutes of Advice on Testing HIV Positive. This is a clever social media campaign: Healthline, an online health community, has asked people who have been living with HIV to create videos for those who have recently tested positive, known as “You’ve Got This.” Think of it as “It Gets Better” for those with HIV. Of course, I had to create a video in my own peculiar way — something that demonstrates the sense of humor that has served me well over the course of 30 years living with HIV. There are now quite a few videos in this campaign with a variety of messages, and I encourage you to visit the Healthline site; you might find the message you or someone you know really needs to hear.
7. Probing My Anal Phobia. I cannot believe I told you these things, which might be one reason this essay is a personal favorite of mine. Maybe this is about facing your fears, because I hate talking about… anal things. So what did I write about? Anal sex, cleanliness, colonoscopies, and the most outrageous douching disaster I have ever experienced. Yes, that’s right, I went there. And the results will either have you laughing or finding out how to unsubscribe. Sometimes, I just need to write things that are on my mind and try to block out the fact that my Mom follows my blog. Enjoy!
6. The Increasingly Strange Case of Uncle Poodle. Long before the Duck Dynasty controversy blew up, another popular reality show had an off-camera moment that caused quite a stir. Uncle Poodle, the gay uncle from the reality show Here Comes Honey Boo Boo, came out in a printed interview as HIV positive, and further claimed that he had been infected by someone who did not disclose his status — and who went to jail as a result. The details, however, are murky, and say as much about shame and HIV stigma as they do about criminalization laws.
5. HIV and Gay Media: The Vanishing Virus. I suppose I have a lot of nerve. After having the honor of being included in an invitation-only summit of LGBT media representatives, I spend much of my time at the event hounding them, on video, about why they don’t write about HIV more than they do. Fortunately, the participants were honest, thoughtful, and quite candid in their responses. The event was co-sponsored by the National Lesbian and Gay Journalists Association and the video was featured on the main page of their site, so I suppose all is forgiven!
4. Surviving Two Epidemics: AIDS and Meth. My history of crystal meth addiction and recovery isn’t something I am ashamed of, but I don’t write about it as much as I once did. The whole recovery process feels almost too precious to share. But when I was asked to share my story for an ongoing feature in Positive Frontiers about gay men in recovery, it just felt right. This essay is my truth, and maybe it will speak to someone at a time when they are ready to make a change. For information on crystal meth recovery, visit http://crystalmeth.org/.
3. The Beautiful Sadness of Dallas Buyers Club. If anyone has a chance of stealing away an Oscar from Chiwetel Ejiofor of 12 Years a Slave this year, it is Matthew McConaughey, who is transcendent in this illuminating look at one straight man’s response to the lack of FDA approved HIV medications. Some have criticized the film for not showing the impact of gay activists, but that’s part of the point of the film: this is the story of this terribly damaged straight man, and how his prejudices were (somewhat) overcome through his own advocacy, as self serving as it may have been. You can count on one thing: Jared Leto, who played a transgendered friend, will be taking home an Oscar for Best Supporting Actor.
2 (tie). Stop Bludgeoning Young Gay Men with Our AIDS Tragedy. I thought I could say these things that other folks — HIV negative or young gay men themselves — would be crucified for saying. I was wrong. I got crucified, too. Fortunately for my sensitive ego (yes, angry comments still hurt my feelings), many others understood that our history is important and vital to preserve, but it’s not a prevention strategy for the landscape of today. This was more primal scream than writing for me. Perhaps I should learn to count to ten?
2 (tie). The Private War That Killed Spencer Cox. It’s kind of amazing to realize that Spencer, an early activist with ACT UP New York that went on to found Treatment Action Group, died only last December. So much has been written and done in his honor, including ongoing public forums on either coast that address PTSD among people with HIV/AIDS, and how we as a community can best address their (our) needs. This essay, posted soon after Spencer died, explores some of those issues, including trauma, loss, and addiction, all of which Spencer himself wrote about before his untimely death at the age of 44.
1. Your Mother Liked It Bareback. I had the title before I wrote the piece, and that’s probably a terrible thing to admit, because the title alone incensed people (The Huffington Post, which carries my content regularly, refused to post it at all). Another primal scream put on paper, an outgrowth of complete frustration over our refusal to admit that there are other “protections” against HIV that do not include condoms. Despite applauding those who do use condoms more than once in the piece, I was accused of “promoting” barebacking and received my favorite name-calling moment of the year, as a “vile merchant of death.” Even when faced with the facts about undetectable viral loads, or PrEP, some who read this article fell back on 40-year-old worries: “you could get an STD!” Honey, if the worst we have to fear these days is the clap, then sign me up. That just makes me feel nostalgic.
But wait! The Real Winner of 2013: “The Sound of Stigma.” When POZ Magazine asked me to contribute a cover story on HIV stigma among gay men, I had no idea it would become my most widely read essay of the year, by far, without even appearing on my own site. Even more surprising, to me, because the piece is such an indictment of how gay community turns against its own (“We are AIDS itself.”). The posting of the story on Poz.com has been shared 2,500 times and has more than 150 comments, ranging from emotional to angry to heartbreaking. I am proud and yes, humbled, that the article contributed to such an important conversation.
Have a bright, joyful, and healthy 2014, my friends.
Tags: A Place Like This, Aging, aids, barebacking, criminalization, culture, family, gay, gratitude, help others, hiv, meth, physician, politics, recovery, serosorting, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
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 | 4 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 | 38 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.