News
Hiding from the “AIDS at 30″ media storm.
Tuesday, June 14th, 2011
I shuttered myself from most of the hoopla surrounding the “AIDS at 30†milestone (we seem to have agreed on June 5, 1981, when an item in the Morbidity and Mortality Weekly Report reported deaths among gay men). The trauma of those early years is tough for me to revisit. Every media piece seemed to be about the past and it all felt emotionally overwrought and indulgent. I skimmed the coverage and secretly wished it would just go away.
Revealing the intensely personal isn’t normally a problem for me; I wasn’t shy about addressing our darkest days in my video blog entry Once, When We Were Heroes (right), so it’s not like I can’t go there. Maybe the sheer volume this month of tragic stories and heartfelt blogs and “I Was There†interviews was too much for my scarred psyche.
It could also be an ego thing. All these extra voices showing up and piling on their stories. Hey Missy, that’s my gig, move it along, thank you very much. During the media frenzy of “AIDS at 30″ I felt like a professional drag queen refusing to venture out on Halloween. Too much competition. And from such amateurs.
This week I finally paid more attention to what has been written this month, and of course, it’s pretty damn good.
The 30th (what? Celebration? Anniversary? Commemoration? Did we decide on something?) yielded some tremendous coverage at The Body, my favorite online HIV resource. And obviously, how the hell can people appreciate our AIDS history is we don’t document it at every opportunity?
Asking the gay bloggers at The Body to speak back and forth between generations about their HIV/AIDS experience was inspired. Anyone under 35 is my favorite audience, although the over-40 crowd probably understand me a lot better.
I also really enjoyed Nelson Vergel’s interview with Dr. Michael Gottlieb (left), the man who published the first report of some rather strange deaths among gay men. Dr. Gottlieb also happened to be my physician in Los Angeles when I was diagnosed with HIV in 1985. During those days, I once forced Dr. Gottlieb to tell me his best guess for my lifespan, and he went out on a limb to say I could make it to 40. That birthday came and went, ten years ago. When the preeminent expert in the field gets it that wrong, you know we’ve had more success treating this virus than anyone had hoped in the early days. Thank God.
Elsewhere, I admired Regan Hofmann’s (right) recent editorial at Poz Magazine immensely. With nary a glance backward, she sat squarely in the present and outlined the thirty issues that are most important to the crisis today and in the future. It was also a solid primer on the emergence (and debates about) new prevention theories like Post-exposure and pre-exposure prophylaxis and “test and treat.â€
Once I allowed myself to “face the past” by checking out Karen Ocamb‘s amazing reports from the early days of the crisis, I was happy I did. Karen is a Frontiers news editor who has been covering LGBT issues in Los Angeles for 30 years, and in her collection of stories from the AIDS frontlines of the 1980′s (complete with video she shot herself), she takes us along to an early AIDS protest (left), to early treatment activism meetings and to the unfolding of the AIDS quilt. Karen’s close relationship with history and her “home movies” give the stories amazing intimacy. I recommend the series highly.
The media rush of tragedy and inspiration known as “AIDS at 30†is dying down. As much as I want coverage of HIV and for there to be constant prevention messages, I’m a little relieved. I can comfortably go back to debating our current treatments and campaigns, sharing sweet and funny stories about my life with HIV, and wondering why the hell the media doesn’t pay more attention to HIV/AIDS.
We all have our coping mechanisms. Allow me a little healthy denial.
As always, my friends, please be well.
Mark
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PLUS…
Sean Strub is once again ringing the bell about criminalizing people who do not disclose their HIV status, and it tolls for thee. We covered some of this ground when Sean and I discussed Five Things About HIV They’re Not Telling You, but in Sean’s newest posting at Poz.com, he takes this a bit further. Are we a few short steps away from prosecuting those who do not take their medications? Sean sees the intersection of “test and treat” and the treatment of those with HIV as criminals as a dangerous mix that could theoretically lead to forced treatment, just as a prisoner might be compelled to take meds. It’s a bit chilling, and perhaps fantastical, but whoever thought there would be people with HIV sentenced to jail for 20 years for spitting?
Our national disgrace known as the AIDS Drug Assistance Program (ADAP) Waiting Lists continues, and the lines keep getting longer for patients waiting to receive life-saving medications. There are reports of patients who have died during that wait. The ADAP Advocacy Association (aaa+) continues its mission to combat this lack of funding, and in their recent blog they offer evidence that the most effective weapon in our advocacy tool kit is you, referencing a study showing that when people like you and me simply pick up the phone, it matters as much as high-powered lobbyists. And it’s simple! Take a look at my video blog from the last ADAP Summit and you can get instructions on exactly what to do. Meanwhile, I’ll be attending the upcoming ADAP Conference in Washington, DC, and will share everything I can with you.
How do we bridge the LGBT generation gap? That’s been the topic of two really terrific postings this month around Gay Pride, and the communication disconnect between young and old seems to be the culprit. I’d love to be an “older mentor,” but who would have me? What spaces encourage dialogue and a chance to share our history? Olivia Ford of The Body.com raises these concerns in her excellent piece What’s It Really Going to Take to Make it Better? Olivia knows that we have a lot to gain from inter-generational interaction, but beyond the It Gets Better Project, how do we accomplish this? Meanwhile, some people think that younger gay men are ungrateful little snots. Jake Weinraub is totally over it, in his piece What Sucks About Most Privileged Gay Men for The Bilerico Project. Both are definitely worth your time, and you should always join the conversation by posting a comment!
Tags: aids, culture, drag, hiv, politics, research
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 3 Comments »
Calling HIV Negative Gay Men: This is Your Time
Tuesday, May 31st, 2011
This is directed to HIV negative gay men. Listen carefully. This is your time.
I’ve lived with HIV more than half my life, and people often praise me far more than I deserve, simply for surviving. They use words like brave and courageous.
You know what takes courage? Getting an HIV test every few months. You, waiting nervously while your most personal sexual choices are literally being tested, waiting to find out if you’ve been good – or if you’re going to pay for a single lapse in judgment by testing positive, when the look on the faces of your friends will say you should have known better.
I have no idea what that must be like. I took the test over 25 years ago. The positive result was traumatic, no doubt about it, and I soldiered on during some awfully frightening times. But I have a significant psychological advantage over my HIV negative friends: I only took that damn test once.
During all these years, I’ve acted irresponsibly at times or taken chances I hadn’t intended. But there has been no further judgment from a blood test. That reckoning was faced long ago.
But you – whether you have been sexually active for a year or a decade – have very likely faced some tough choices and behaved wisely. You keep doing the right thing.
This is your time. The word courageous is for you.
If you don’t define yourself, in large part, by the fact you are HIV negative, start now. It is your accomplishment. It says you are taking care. And it says you are eligible to participate in vaccine trials or mentor someone else trying to remain negative.
There is ongoing research now that is focused on HIV negative men like you. Exciting new studies are investigating drugs to prevent infection after something risky has occurred, while other studies have shown promise for a drug regimen that might block infection before it happens.
And right now there are vaccine trials waiting for men like you to help find the ultimate weapon against HIV. They need volunteers, badly.
This is your time. This research is about you. This call to action is for you.
I can already hear the rumblings on both sides of the viral divide. People are so quick to take offense, so afraid of being misunderstood, of being labeled or blamed or ostracized.
My fellow positive brothers are so bruised by stigma that it can be hard for them to lift you up. They’ve been rejected by you. They don’t like hearing “maybe we should just be friends†and they don’t like seeing “UB2†in your online profile. They might be positive as a result of one heated mistake, or due to sexual assault, or by trusting (or loving) the wrong person — and they deeply resent feeling judged.
Maybe they think your negative status is the result of pure luck, or that you don’t like anal intercourse, or you’re lying.
Meanwhile, your sacrifices go unrecognized. You’ve seen some positive friends take early disability, hang out at the gym and get help with the rent. They receive so much support and empathy that it must feel like there isn’t much left for you. Every year we all swarm the streets for the AIDS Walk, and you can’t help but wonder if your parade will ever arrive.
These grievances and resentments give me a headache. It doesn’t matter much to me who is most injured. How infinite is our compassion for one another? I don’t care anymore who gets what. What matters most is who does what.
This is your time. This truce, this call to a higher purpose, is for you.
You are fully human, like everyone else, my friend. You are courageous, afraid, selfish and compassionate. You make difficult choices and you make mistakes. And we need you so very badly.
Thank God for you. This is your time.
(This piece was written as part of the GA Voice commemoration of 30 years of HIV/AIDS. I was honored to contribute to their special issue. — Mark)
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If you haven’t caught up with the blog from gay theologian the Rev. Chris Glaser, his thoughtful posting about the rapture, and what it means to be left behind, is a great introduction. Chris has a way of bringing Christian teachings back to their essential meanings (in other words, without the hateful language and intent we have come to expect from fundamentalists). As a child he didn’t want to go to hell, but he was afraid of the rapture because of his fear of heights. And who in their right mind would leave this poor doggie behind?
Sadly, as the lives of thousands of people living with HIV/AIDS hang in the balance, our federal government has funded numerous “pet projects” – including such programs as Jell-O wrestling at the South Pole, testing shrimp’s exercise ability on a treadmill and a laundry-folding robot, all funded by the National Science Foundation. These facts, from the ADAP Advocacy Association’s (aaa+) newest blog posting, paint a dire picture of our national healthcare priorities. The blog also begs the question, “Where is the leadership?” I would urge urge you follow aaa+ and stay tuned for ways in which you can advocate to solve this national disgrace.
A New York Times article on the scientific history of AIDS does a great job of showing how naive researchers were in the beginning of the epidemic (a 1981 New England Journal of Medicine editorial didn’t even allow for the existence of a new microbe), but, more importantly, it highlights the ways in which AIDS activism and research has rewarded all of mankind with swifter drug approval and better patient advocacy:
“The relative speed with which the therapies were developed owes much to the efforts of cadres of activists who demanded that the Food and Drug Administration loosen the rules for clinical trials and speed its drug approval process. Efforts to develop anti-H.I.V. drugs have paid handsome dividends by leading to development of other drugs to treat other viral infections, like the liver diseases hepatitis B and C and certain types of herpes viruses. Also, AIDS advocacy has spurred leaders of campaigns against breast cancer and other diseases to adopt similar strategies.”
As always, my friends, please be well. And I hope you will “share” this posting with your friends and colleagues. Here’s to a wonderful summer!
Mark
Tags: aids, culture, gay, gratitude, help others, hiv, research, Sexuality, testing
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 4 Comments »
Vacations and Retreats for People with HIV/AIDS
Thursday, April 28th, 2011
Summer is approaching and vacation plans are being made – but have you ever considered a retreat or getaway with other people living with HIV/AIDS?
It might sound odd to seek out a vacation event just for people with HIV. For me, my status is only a part of who I am, and I’ve gotten pretty good at disclosing when I need to. But for many of us it’s tough getting past that hurdle. So joining a group of others living with HIV might be a fun solution if you’re looking to make friends with other people living with HIV and build your support network.
Whether roughing it in the great outdoors or getting pampered on a cruise ship, there’s a growing number of options. Here’s a look at just a few.
The HIV Cruise Retreat. Okay, we’ll start with kind of a fancy one, because I’ve actually participated in this one and I’ll go again this year.
Openly HIV+ travel agent Paul Stalbaum organizes this cruise each Fall to the Caribbean, and I had a blast last year – over 200 people, mostly gay men, drop all the usual gay bar posing and really let themselves enjoy the fellowship and exotic locales. It’s not cheap – cabins start in the $700 range for a full week cruise. Note: I’m not paid or compensated for plugging this cruise; I really did have a fantastic time last year.
The HIV Campground Project promotes social camping events at a variety of locations around the country, usually weekend retreats at campgrounds for gay men.
Their web site has information but I found their Facebook page (HIV Camp) to be more useful. Various retreats range in costs from FREE to $100 or so, and based on their web site (and the foam party pic shown), they’re looking to attract the party hearty crowd.
For women who can travel to the Oakland, California area, an organization known as WORLD (Woman Organized to Respond to Life Threatening Illness) attracts women from across the country to their retreats held twice a year.
The retreat itself will only cost a first-time attendee $40, and this is often offset through scholarships. Each 3-day retreat provides up to 40 women with a holistic experience that includes treatment education workshops, stress management, art activities, support groups, safer sex information, and discussions on topics including disclosure and stigma.
I must say I am intrigued by Colorado Manreach, a community building organization that hosts a series of retreats throughout the year in “all four corners†of Colorado for gay men.
The pictures I’ve seen show some awesome scenery and what appears to be handsome, rugged men enjoying themselves. What a great getaway this would be! Both HIV positive and negative men are welcome, and registration is free (a donation of $50 per day is requested). The retreats are produced for men in rural areas of Colorado, but Manreach has welcomed guests from neighboring states as well.
But if you love Colorado, there’s more! The purpose of the HIV Retreat at Shadowcliff is to offer a proactive environment where poz folks can learn skills in a setting of friendship, safety and acceptance… by providing an affordable 3-day mountain getaway. Not to mention it’s in an awesome setting with a full agenda of educational, social, and other activities.
Shadowcliff (left) has two retreats coming this year, with costs ranging from $80-90 discounted fees to a full price up to $195. Who knew Colorado was the place for poz retreats, huh?
If anyone has participated in one of the retreats of vacations I’ve mentioned, you really must give me the scoop! I’ll look forward to your posted comments and feedback — and other ideas I may have neglected to mention.
For a good resource of ongoing retreats, travel tips, and up-to-date information on international travel restrictions for people with HIV/AIDS, check out HIV Travel Restrictions and Retreats, or browse their Facebook page.
And let us not forget, there are a multitude of opportunities to make friends through online communities, especially if you’re unable to travel to one of these retreats. Besides the usual dating (and hook-up) web sites, my favorite social online network is POZIAM, a free site devoted to creating a non-sexual, social environment for men and women living with HIV. You’ll find chat rooms, pictures and video of events, and plenty of friendly and supportive online members.
As always, my friends, please be well.
Mark
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PLUS…
DID YOU KNOW THAT SEMEN MAKES WOMEN… HAPPIER? A research study has found that female college students having sex without condoms are less depressed, as opposed to women having protected sex or none at all. Only 5 percent of the ejaculate is sperm. What’s left is seminal plasma, which is a rich concoction of chemicals, including many that have the potential to produce mood-altering effects derived from hormones, neurotransmitters, and endorphins.
Of course, a guy like me wonders if the same effects might be found among gay men, but I won’t hold my breath for that study to transpire. And before safer sex advocates freak out, let’s assume that the women in the study were in monogamous relationships. And hey — if you notice a gay friend with a certain spring in his step, maybe he and his partner are faithful, have been tested, and knew this secret before the research was published!
FLORIDA ADDS CRIMINAL INSULT TO INJURY FOR STRUGGLING ADAP CLIENTS. The ADAP crisis continues to go from bad to sickening in Florida. First, Florida is working right now to eliminate the ADAP wait list – but not by funding the program. Instead, the State is trying to change the enrollment requirements to make it much tougher to qualify to participate. Wow. Florida gets rid of the wait list by getting rid of the clients and pretending they don’t exist.
It gets worse. A recent audit of the Florida ADAP program found that monies for the program have been incorrectly used to pay State employees who are not even connected to ADAP! How many medications have never made it to an AIDS patient because the money was used to pay a DMV employee?
If this situation angers you as it should, I encourage you to get involved by contacting your elected officials or joining the mailing list of the ADAP Advocacy Association. You MUST do this: sign a petition objecting to Florida changing the ADAP qualifications, through this electronic petition through The AIDS Institute.
Posted in Living with HIV/AIDS, My Fabulous Disease, News | 10 Comments »
Walmart Gets Better.
Wednesday, March 23rd, 2011
They always say time changes things, but you actually have to change them yourself.
– Andy Warhol
Yesterday I had a conference call with Walmart public relations manager Ravi Jariwala, and Crosby Cromwell, a manager for constituent relations. We discussed the fact that I wasn’t able to use the word “gay” in my review on the Walmart web site for the new, marvelous book It Gets Better: Coming Out, Overcoming Bullying, and Creating a Life Worth Living.
Oh, and I kind of blogged about it across the whole wide world on all sorts of LGBT sites, saying how much it pissed me off.
“I apologize that this situation has been created,” Ravi began. “It was a systemic oversight, in which ‘gay’ was on a list of filtered words. Certainly it makes absolute sense for you to include this word in your review… This is a no-brainer for us.”
He said other nice things. Crosby said nice things. No one laughed at me or called me names. They were focused on resolving the issue and pledged to have their list of flagged words changed within 24 hours.
I’m pleased to report that “gay” is now a perfectly acceptable word to include in posted comments on Walmart’s site. Other words have also been cleared, including lesbian, homosexual, bisexual and transgendered. And my review of the book, as I originally wrote it, has been posted on the Walmart site.
Here is Walmart’s official statement on the matter:
Recently it was brought to our attention that Mark King was unable to complete a review of the book “It Gets Better†on Walmart.com. We regret that a filter did not allow his review of the book to post and we quickly worked to resolve this technical issue.
We reached out to Mark directly to discuss the issue and, as an extra measure, we have reviewed the system to ensure that it will allow the use of all appropriate words related to sexual orientation and gender identity.
There is probably no national retail chain with as problematic a reputation as Walmart, and I can only imagine the topics that other advocates would have wanted me to broach with these corporate representatives. But I had one issue, one specific complaint that I asked to be addressed. And on this day, on this issue, Walmart did right by the LGBT community.
Now, everybody go buy It Gets Better.
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It’s impossible to overstate the impact Elizabeth Taylor has had on HIV/AIDS awareness and funding since the earliest days of the epidemic (Ms. Taylor died earlier today).
Since the early 1980′s, when people were still wearing masks and gloves around AIDS patients, Ms. Taylor (Elizabeth to her friends, never Liz) has been at the forefront. She organized the very first “commitment to Life” event in 1984 for AIDS Project Los Angeles (APLA) — and while doing so, learned her friend Rock Hudson was dying of the disease. She co-founded the American Foundation for AIDS Research (AmFAR) in 1985, and her own Elizabeth Taylor AIDS Foundation in 1993.
Oh yeah. And she was an Oscar winning movie star, the likes of which we may never see again.
I watched her walk onstage, in evident pain from chronic back problems, at an APLA event in the late 1980′s in Los Angeles. “With every breath of my being,” I remember her saying, “I will fight this disease and for the rights of people with AIDS, until the day I die.” And that, my friends, is exactly what she did.
Tags: aids, culture, gay, help others, politics, research
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 14 Comments »
Walmart, the G word, and internet activism.
Tuesday, March 22nd, 2011
Forgive your enemies. It messes with their heads.
– Unknown
Walmart is selling the new It Gets Better book. Just don’t call it gay.
Okay, this is really a story of how a selfish act turned into a firestorm of activism. It has drama, self-righteousness and the hottest new book to hit the stores!
Yesterday I was mindlessly wandering around the internet. Don’t judge. I’m a blogger, it’s in the job description. I eventually did a search for any reviews of It Gets Better: Coming Out, Overcoming Bullying, and Creating a Life Worth Living (I posted a fabulous review of it last week and wondered if there were others). The book goes on sale today and if you can, you must buy one for yourself and then for your local school or library.
I noticed Walmart was selling it online. Huh. That’s ironic, I thought. I went to their site and immediately responded to “Be the first to write a review.â€
“Like many people who grew up gay and afraid…†I began, stealing a line from my own posting last week. My paragraph ended with a link back to my site for the full review. I pressed “enter,†and up popped a scary red box telling me that my posting contained profanity and I better remove it before all hell breaks loose.
No one can break hell loose better than Walmart, I figured, so I scanned my review and found nothing objectionable. Well, nothing objectionable to me. I needed another perspective, so I co-opted the psyche of a mid-19th century Amish diary farmer and presto! the word “gay†jumped from the page like the demon-possessed adjective that it is.
I’ll admit I didn’t hesitate to delete the word from the post or get indignant, because here’s the selfish part, my friends: I only wrote a review to plug my blog. That’s one of the marketing secrets of blogging: post on as many other sites as possible, and always sign with your blog address, to attract like-minded readers. Damn me and my insatiable thirst for blogging fame!
After an hour, my Walmart posting was still “waiting review,†and only then did I find the episode vexing. What the crap is taking them so long, I steamed, and hey, why’d I have to delete the word gay, anyway? It screwed up the whole rhythm of the sentence! Oh, and it might be discriminatory.
(As of this writing — and I will keep this updated — my review, minus the G word, has yet to be posted. I have sent e-mails to both the media contact at Walmart regarding this issue, and left feedback on their corporate page. There has been no response.)
This is where everything accelerates and feels like the first half of The Social Network, when their computer explodes with hits and they’re writing code on windows and stuff. I posted a mention of all this on Facebook and my more activist oriented friends pitched a fit. Hmm, I mused, this could be a legitimate concern for people. And bring readers, my God, readers!
I posted another mention of it on the It Gets Better page on Facebook. Then blog guru JoeMyGod contacts me to verify the story, and lickety split, the story is on his site and sixty commentors are furious about it and/or think it’s no big deal and/or being snarky with one another. Plus, Joe has linked back to my blog review on my own site and my traffic is like rush hour. Nirvana!
But that was so, like, yesterday. Today I have a posting about all this on The Bilerico Project, and I’m hoping to lure people like Towleroad and The New Gay into my web of political outrage. Linking to them one sentence ago could help, no?
The fact is, the internet has been dicey when it comes to sorting out what’s dirty and what’s divine for many years now. Scores of people never receive my mailings if I have the words “gay†or “sex†or even “AIDS†in the subject line. And Walmart, well, they may misguidedly believe that, by disallowing the word “gay,†they are preventing people from saying “that’s so gay!†in the product reviews.
I have a problem with that. I like the word. It defines me quite nicely. And I hate to surrender it to homophobic people simply because they might use it against me with an insipid teenage catch phrase.
Oh my. An outburst of activist righteousness has escaped me, and a sincere one at that. I hope you’ll take note of it – and then send this link to every single person on your e-mail list.
Please be well,
Mark
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A more substantial debate is raging among AIDS advocates right now – does PrEP (pre-exposure prophylaxis) help or hurt prevention efforts? PrEP, in layman’s terms, is the strategy of giving a pill regimen to people at risk of contracting HIV – the regimen appears partially effective, in early studies, in keeping them from becoming HIV infected. The AIDS Healthcare Foundation, for one, has gone on record saying “there is no magic pill,†because they fear PrEP will lead to riskier behavior. But other HIV advocates, like many involved in IRMA (International Rectal Microbicide Advocates) believe PrEP is worthy of further investigation. Yes this sounds wonky, but trust me, it has everything to do with the future of HIV prevention and it’s worth your browsing these links and forming your own opinion.
An important AIDS conference has news to share: the 2012 International AIDS Conference (AIDS2012) has launched its web site. Major plans are underway for this conference, the first to return to the United States since the ban was lifted on those with HIV traveling to the United States. Exciting details are leaking about what should be a massive conference, including early plans for the Names Project AIDS Memorial Quilt – in its entirety – to be displayed once again in D.C. during AIDS2012.
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 3 Comments »
The Book with a Promise: It Gets Better
Tuesday, March 15th, 2011
There were moments while reading It Gets Better, the new book inspired by the YouTube video project to help bullied youth, when my heart leapt to my throat and hovered there. It happened a few times, quite unexpectedly, usually while in the middle of some essay from an author I’d never heard of. In an instant, I found myself fighting back tears over the pain of someone who was once convinced they would never be happy or accepted in this world.
These emotional bombshells are the secret weapon in this collection of essays: moments of aching truth that pierce the sometimes distracting hype associated with the “It Gets Better†project and deliver an emotional wallop.
In case you don’t know (really?), the It Gets Better Project is the brainchild of writer Dan Savage and his partner Terry Miller. In response to a rash of gay teen suicides due to bullying, the couple realized they didn’t “need permission from parents or an invitation from a school†to reach troubled LGBT teens. All they needed was YouTube to talk to them directly, telling kids to hang on, that “it gets better.â€
Months before social media helped topple governments across the globe, this simple idea led a revolution of its own. It reached millions of kids and made The Trevor Project, a crisis hotline for LGBT or questioning youth, a household name. As the YouTube channel exploded, celebrities and elected officials joined the chorus of messages from everyday folks.
And now, the book. It Gets Better: Coming Out, Overcoming Bullying, and Creating a Life Worth Living (released on March 22) is “inspired†by the video project, meaning some of the essays are original written pieces while others are edited transcripts directly from videos. It’s an earnest, uneven, truly inspirational collection, with enough of those heart-in-your-throat moments to keep you reading.
Interestingly, the most famous names in the book have the least impact. Barack Obama, Hillary Clinton, Al Franken, Suze Orman (left), and even Ellen Degeneres are all here, but their pieces feel about as passionate as thumbing through their cue cards. Maybe fame leads to caution.
You’ll have to settle for celebrity twice-removed to tap a wellspring of real emotion. Randy Roberts Potts is the grandson of the late, ultra-homophobic televangelist Oral Roberts, and Randy shares a family secret more salacious than his own homosexuality: his uncle, Ronald David Roberts, was also gay, and he was so despondent after coming out to his famous father that he killed himself with a gunshot to his heart.
Randy’s own story is filled with religious and social trials, but there is victory. “I had to fight hard for it, but it finally happened,†he writes, “the freedom to just be myself.†And then he can’t resist this: “My grandfather was famous for telling people, ‘Something good is going to happen to you!’ And, it’s strange to admit it, but he was right.â€
I still have the voice of lesbian Gabrielle Rivera ringing in my ears. Gabrielle appears on page 45 and not a moment too soon, bursting with truth and anger and passion. “It kind of doesn’t get better,†she proclaims. “…but what happens is this: You get stronger. You learn how to love yourself. You learn that other people are just crazy and caught up in their own crap.â€
I’ve never been more moved by a dinner menu then I was reading the entry of food blogger Adam Roberts, who shares exactly what he prepared the night his parents came for dinner to meet the parents of his partner, Craig. Adam intersperses his coming out story with details of the night’s short rib and polenta, and the care, the sheer detail and love, with which he prepares the meal touched me deeply. By the time he served the flourless chocolate cake I was a complete mess.
Krissy Mahan from upstate New York (why are so many of my favorites from lesbians?) assures her readers that “not all gay people are urban… I’ve been really happy being a big rural dyke.†She loves country living but says “I’m sure there are some things that are kind of frustrating to you, and you’re probably rockin’ the flannel shirt every now and then, but that is going to be totally hot to somebody someday. It’s gonna get real better.â€
And even an actual reformed bully makes an appearance in the book. Joseph Odysseus Mastro is a straight 29-year-old from Oakland, California, and he has a confession to make. During high school, Joseph “was belligerent toward kids I recognized as being in the theater group, screaming ‘Fag! Faggot!’ at them.â€
Beyond apologizing to them, Joseph turned to community service. At 19, he began handing out condoms and lube outside gay clubs on behalf of an AIDS agency. “Some of my straight friends would ask ‘why are you helping out the gays?’ which is a reprehensible question in the first place, but I respond that… there are gay men who have HIV, and they’re who I want to help.†Joseph wins the Reformed Bully of the Year Award, hands down.
The real excitement of this book is imagining where it will end up – a public library in South Dakota, the reading room of a youth center on an Air Force base — and how, because we must, we get this book on the shelves on every junior high and high school in the country.
Last year, my (also gay) brother Dick and I sat down at our Mom’s house and turned on the camera. For the next few minutes we traded stories about growing up gay in the same family – about 15 years apart – and even brought out photos from our youth. We teased each other like brothers do, and it was apparent we love one another, because we do.
Our It Gets Better video became a popular entry, and we were honored to be included in this book. There we are on page 300, near the back, in a transcript of our chat that reads like a sassy play with two very gay characters. It is neither the best nor the most moving essay in the book, but it does show an easy love between us, and that alone may be of value to a LGBT youth out there. I couldn’t be more proud.
Like many people who grew up gay and afraid, my soul may have survived those years but I have a few scars left behind. It Gets Better gently strokes these wounds — the toughened and the still-tender ones — so that young people today might take heart and make the journey to adulthood a little more safely.
There’s no denying the power of this project, and what could easily be the most important book of the year.
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Word from the organizers of the annual HIV Cruise Retreat is that there are now more registrants for the November cruise to the Caribbean than ever before! I was honored to be the M.C. for the cruise last year, and honestly I had more fun than I could have imagined (nope, I’m not getting paid to participate or to promote this event). Take a look at the web site for video from last year’s event and consider joining us. It’s a largely gay group with straight allies, but without barriers or attitude, just sincere support and a lot of fun.
Tags: acting, culture, family, gay, gratitude, help others, politics, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, My Fabulous Disease, News | 4 Comments »
A Very Special One-Year Anniversary Posting!
Tuesday, March 8th, 2011
When Mark first started My Fabulous Disease, I was pretty sure it was going to directly result in the destruction of humanity. One year later, we’re all still here.
I can’t believe I lost that bet.
Myles Helfand, Editor, The Body, The Complete HIV/AIDS Resource
My father always said, “Raise your hand. Ask the stupid questions. Don’t be afraid to make a fool of yourself.†If he isn’t rolling in his grave today, he’s certainly shifting a little, because if there’s one thing I’ve tried to do with my blog it has been to ask basic questions of others — and reveal everything I can of myself. The result has been a really gratifying experience sharing my life as an HIV positive gay man in recovery from addiction.
One year ago, I launched “My Fabulous Disease,†but the site was birthed and nurtured by the talented staff of TheBody.com. I have been contributing to TheBody for more than a decade as a writer, and producing videos for the last several years. For that I am indebted to Bonnie Goldman, the founding editor of The Body, and to the current Community Manager, Olivia Ford.
In this special video episode, I have some fun answering the most frequently asked questions about my videos — and what it has been like exposing myself, figuratively speaking, to all of cyberspace. The bottom line: it has been an honor to reveal, report, and ruminate on life’s challenges and joys as an HIV positive man.
I realize I’m not exactly an expert in the science of HIV or even a lot of the psycho/social issues involved. What I am, though, is curious. So I’ve tried to trust my own instincts and “ask the stupid questions†my Dad was talking about. Whether it was meeting teens at the AIDS conference in Vienna, exercising with fitness expert Nelson Vergel, or interviewing activists at the recent ADAP summit, I let my curiosity guide me.
Sure, I’ve bombed a few times with my videos. It’s been a learning process, and sometimes I misjudged a topic somehow, or just plain create a boring episode. Trust me – or ask anyone at TheBody, because they know how I worry – I keep close tabs on the comments and on the number of hits. And I’m constantly second guessing my choices. As much as I want to trust my instincts alone, I can’t help but want to be popular.
The episodes that mean the most to me have been the ones which were the most personal and didn’t even focus on my HIV (like “Facing Change,†about leaving Atlanta to renew a relationship, or “Taking Care of Hal,†about caring for my dying brother), or the ones that were the most practical and instructive (like “A Facial Wasting Update†about my facial filler process, or helping people select the best physician in “Six Tips for Choosing Your HIV Doctorâ€).
Along the way I have had the honor to meet people working as activists and elected officials and advocates around the world. How can I not be grateful and happy when I meet such smart and dedicated people? I know our HIV/AIDS crisis isn’t rosy and I know people are suffering. I also know without a doubt that we are in committed, loving hands the world over.
Let me leave you with this: we all have a story to tell. It is the story of how HIV/AIDS has affected our lives. Please, my friend, please tell it. Write an article or speak out on World AIDS Day. If you’re more private, maybe you could just explain to a nephew what it was like when you once lost a friend to AIDS. Maybe it is as simple as asking your friends if they have been tested lately, and why it means something important to you.
There are so many people who write me, and they thank me for giving their experience a voice, because they can not speak out. If you are blessed with the opportunity and ability to share your experience, then please join me. There is so much room, so much loving space in this world, for your voice and your story.
You don’t even have to dress in drag when you tell it. It just helps.
Please be well,
Mark
“A year of My Fabulous Disease isn’t nearly enough. You’ve had the courage to address publicly, with your words and videos, the stuff a lot of gay men and people with HIV are accustomed to only thinking about.”
Sean Strub, Founder, POZ Magazine
Your blog provides a limpid stream of good advice and optimism for anyone who stumbles into it. Your take on living with HIV is clearly the only one worth having, because you manage to inspire and annoy exactly the right people.
Gus Cairns, Editor, HIV Treatment Update
Here’s to many more years of Mark’s disarmingly honest, charmingly sincere, frequently bittersweet, and, above all, community empowering video blog.
Edwin J Bernard, journalist and blogger
Happy Birthday to My Fabulous Disease! You’re just what the doctor ordered.
Robert Breining, Founder, POZIAM Social Network
I feel as if My Fabulous Disease is a sister site to “my glamorous HIV” way of life. More importantly, you’ve been able to create much needed dialogue within the community, and provide information with substance. We love you up here in Canada.
Brian Finch, Founder, PositiveLite
Laughter and lightness of heart have made a comeback in my life, thanks to your nutty taste. I have been reminded often that although our common condition is life (and death), it is no longer life OR death.
Rod Rushing, “On The Ten†Treatment Education Network
If Albert Schweitzer and Joan Rivers had a son, it would be you! Healing and outrageous all at once. Keep “curing” us with “My Fabulous Disease.”
Chris Glaser, author, “The Final Deadline: What Death Has Taught Me about Life”
You and your blog are such an inspiration to others whether they are infected with HIV or someone who is still negative. We are also proud to have you as one of our Dab the AIDS Bear’s Ambassadors of Hope!
Dab Garner, Founder, Dab the AIDS Bear Project
Happy Birthday! You are doing such a great job at portraying the face, humor and humanity behind a terrible disease that will continue to proliferate in our community if people like you don’t continue to remind the rest of us that it still exists.
Zack Rosen, Editor, The New Gay
Tags: Aging, aids, barebacking, culture, family, gay, gratitude, help others, hiv, lipo, meth, physical, physician, politics, Radiesse, recovery, Recreation, research, serosorting, Sexuality, testing
Posted in Anita Mann and Acting Gigs, Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 14 Comments »
My Fabulous Disease: The Top Ten Postings of Year One
Tuesday, February 22nd, 2011
“The suspense is terrible. I hope it will last.”
– Oscar Wilde, The Importance of Being Ernest
How was this judged, exactly? I was afraid you might ask. Not on the number of hits or any formal voting procedure. I relied purely on feedback received through the year and from posted comments, but mostly, umm, I picked my favorites. So there.
presented in reverse order
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#10. The Wisdom of Youth at AIDS2010. My skills (and physical stamina) were sorely tested when TheBody.com sent me to Vienna for the 2010 International AIDS Conference. Every day was a sprint around the massive conference center in search of stories that inspired or amused me. In this episode, I was blown away by a collection of teenage (!) activists from around the globe who gave a press conference and then chatted with me (try being nineteen and an HIV advocate in Afghanistan). Then I interviewed an actual muppet with No Strings, a program that uses puppetry to communicate with African children about AIDS, transmission, and grief. Awesome.
#9. The Real Poz Guys of Atlanta. Nothing has been more important to my long term sanity and well-being than the support of friends, so I decided to let you meet a few of them in this ongoing series of videos. In this, our second get together, my friends Craig, James, Antron and Eric and I (all of us are living with HIV) bake brownies — recipe included in the post! — and dish about our HIV, doctors, families and love lives. To top it off we all engage in some surprisingly moving “show ‘n tell,” by bringing things to our dinner that represent something about life with HIV. If you need to feel the love of friends right now, check this out.
#8. Locker 32, your room is ready… to be hosed and sanitized. Okay, so here’s my bawdy comedy side, in a farewell essay to the gay baths. In my former, youthful and/or drug fueled days, I was a staple in such establishments, and the value of how one looked sauntering about in a towel was a misguided priority that, frankly, I’m still working to shake from my world view. But there’s no such depth in this funny essay, just a final look at the baths on my very last visit, or as the piece begins, “the last time I went to the baths… I stepped in poop.” Hold your nose, and enjoy!
#7. The Price is Right, thirty years after coming on down. “When I was 19 years old, I vacationed to Los Angeles and won a car on The Price is Right.” So begins my book “A Place Like This,” my first-person account of my years in Hollywood in the 1980′s. I use the game show story to reflect on the young man I was and what dreams I had, while AIDS looms in the near distance ready to wreck the plans of a generation. I’ve always liked this as its own essay, though, and thought it would be fun to include the actual footage of my winning the car, so the reader can watch the little story come to life.
#6. My T-cells Could Use a Facelift. I’ve probably posted the heart and soul right out of this poor video, using it more than once this year, but it remains a favorite of mine because it strikes the heart of my issues as a gay man, a man with HIV, and an aging one at that. We’re the guys that can still remember being youthful but we just don’t quite hack it in the cruise clubs anymore. I know I shouldn’t miss it, and yet… The video also lets me show off my butt pads and discuss my not-so-subtle tactics to avoid growing up. Maturity is hard won in my household, my friends.
#5. A Facial Wasting Update. This is when I realized the real potential of my little digital camera: when Dr. Gerald Pierone agreed to let me film our consultation about my facial wasting (lipoatrophy), and the procedure to remedy it. This episode is actually our second video together, when I returned for a follow-up treatment — it reviews footage from the first visit but also gives a more accurate look at the treatment results. At the end of the first episode, I was so pleased with my new face that I shot my closing with such bright light I looked like I was voguing in a Madonna video. I don’t make that mistake again.
#4. I am the man my father built. Why are there passages in our life that we return to, again and again, those milestones that shape us and serve as references points our entire lives? Camping in the woods would seem an unmemorable scenario for a young gay boy like me (behold my pubescent self, right, in repose). Dad wasn’t trying to butch me up, he simply reveled in being different, like pitching a clear plastic tent when all the other fathers and sons on the campout had normal ones. But every time dad instilled in me the value of being different (“that’s the beauty of it,” was his most common exclamation), he was preparing his son for the world in a way he never imagined. A love letter to my dad, and I hope you’ll read it.
#3. Examining death, including the one I caused. To be honest, I thought I was doing my ex-partner Chris Glaser a favor by reviewing his most recent book. But that blithe arrogance evaporated when I read his elegant book about death, “The Final Deadline.” Chris devotes chapters to manners of death and their lessons for the living, and to my surprise includes one about the death of our relationship and there, suddenly and in black and white, was the wreckage of a romance, and the crushing hurt I had caused when I chose my escalating drug addiction over my partner. Reading this book would enlighten anyone, but no one more than me. Chris’ capacity for forgiveness and finding teachable moments is more beautifully rendered in his book than anything I might conjure.
#2. Once, When We Were Heroes. Another one I’ve posted to death — the video version has been on my main page for ages — but it’s as if I’m afraid I’ll never write something quite like it again. It sprang from my observations about so many of us that lived through the horror of the 1980′s and how mundane our lives are today. So many of us were called upon to do courageous things, or withstand terrible grief, and today we’re shopping at Macy’s and planning brunch. Which is a miracle and perfectly allowed, of course. It just makes me realize that you can never know what the man on the treadmill at the gym might have once withstood, or how resilient our own spirits are, when we once thought they might never survive.
#1. The Day Larry Kramer Dissed Me. Pure whimsy, no doubt about it, and the funniest part of this fictional account of a disastrous trip to the mall with Larry Kramer was how many people didn’t know I made the damn thing up. Not until they read the footnote. Reactions were all over the place: how dare I ridicule an icon, they wanted to know. I would be dead if it were not for him, they wailed. And “this is hilarious, please do HRC next!” I have not had the honor of meeting Larry Kramer but idolize him as an activist and as a writer. And if my “six degrees of Larry Kramer” friends are telling the truth, the man himself got the joke and liked it (and even left a posted comment for all to see).
Honorable mentions: My provocative chat with activist and POZ Magazine founder Sean Strub, “Five Things About HIV They’re Not Telling You,” had prevention advocates either impressed or aghast, and that’s a good thing. My favorite little video was the Gay Pride PSA That Will Never Air, which begins with funny stories before it punches you in the gut with a message about drug addiction. And speaking of addiction, there’s a precious vision of recovery is in the simple essay “A Dance to an Atlanta Night,” in which I enjoy some simple pleasures with friends who have seen me at my worst.
I feel like I’m hitting my stride. Thanks to all of you for your words of encouragement, and I mean that. This has been an awesome adventure because of you. As always, please be well.
Mark
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I hope you will consider “sharing” this via the buttons below with anyone who might enjoy an introduction to the blog. I love reaching new readers. Thanks.
Tags: A Place Like This, acting, Aging, aids, barebacking, culture, drag, family, gay, help others, hiv, lipo, meth, physician, politics, recovery, Recreation, serosorting, Sexuality
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 | 2 Comments »
Hitting the Gym with HIV Fitness Expert Nelson Vergel
Thursday, February 3rd, 2011
I’m as vain as the next guy. And if the next guy happens to be modest, or straight, or comfortable in his own skin, then it’s really no contest. I’m way more vain. Describing my vanity requires making up new words. Vainer. The vainiest. Psychovain.
That must be the old Mark, because the new one is appearing in gym clothes standing next to HIV fitness and nutrition expert Nelson Vergel. There I am, all doughy and smiling, thirty pounds heavier after a year without a cigarette (how long do I get to legitimately use that reasoning?). But anything for you, my friends.
And besides, the meaning of fitness for me has changed, however slowly, from the size of my biceps to the overall health of my body. After a misguided youth devoted to “looking hot” and feeding my drug addiction (a period that stretched into my 40′s, who am I kidding?), standing around in a gym with my gut exposed is real progress for me.
In my first video blog with Nelson (“Fitness Stud Nelson Vergel Raids My Fridge”), he ransacked my kitchen and offered great tips on eating right. In this new video, we hit the gym for a lesson on aerobic activity and weight lifting. With issues like bone density more vital for people with HIV, weight training makes sense.
Still to come: Nelson takes me on an eye-opening tour of the grocery store – and cautions me about walking down the aisles. And for more great information from Nelson, his new book Testosterone: A Man’s Guide is now available through sellers like Amazon.
I’d like to extend a special thanks to The Poverello Center in Ft Lauderdale. Poverello not only provides food for people with AIDS, they created the Friends Fitness Center (photos above) and graciously allowed Nelson and I to film this video there. And speaking of filming, my friend Kai patiently worked the cameras for several hours and I appreciate it.
Thanks for watching, my friends, and please be well.
Mark
Tags: Aging, help others, hiv, lipo, physical
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 7 Comments »
AIDS Activism 101: Steps to end the ADAP crisis.
Monday, January 31st, 2011
Activists held an “emergency summit†this weekend to address the growing AIDS Drug Assistance Program (ADAP) crisis, and I’m taking you there. In this video episode of My Fabulous Disease, you’ll learn about the panic over ADAP, and exactly what you can do to prevent thousands of AIDS patients from losing access to life saving medications.
The video is also a revealing glimpse into real-time activism, including tensions among the advocates themselves (mostly over the role of Big Pharma), and emotional moments of personal frustration and fatigue from years of AIDS advocacy.
The weekend was organized by the ADAP Advocacy Association (AAA+) and held in Ft Lauderdale (Florida has, by far, the longest waiting list of patients now waiting to join the ADAP program). The lead sponsor of the event was the AIDS Healthcare Foundation.
The 2011 Emergency ADAP Summit featured presentations from the National Alliance of State & Territorial AIDS Directors and an impressive assortment of advocacy groups such as Housing Works, A Brave New Day, Broward House, and the Florida HIV/AIDS Advocacy Coalition. Even pharmaceutical representatives were there to explain their drug assistance programs for patients, adding a layer of “civility vs. activism†tension that kept everyone on their toes.
If you’d like to know if there is a waiting list in your state, you can find this information on the AAA+ web site, and the Fair Pricing Coalition provides information on the various pharma drug assistance programs.
The pleasure of devoting my weekend to this issue was doing it alongside some amazing people, particularly friends from the blogosphere I was meeting in person for the first time. Here’s a happy group of us taking a break from the proceedings, including (clockwise from top left) myself, POZIAM blogger Christopher Myron, Dab Garner (Dab the AIDS Bear Project), Sherri Lewis (“Straight Girl in a Queer World“), and POZIAM founder and blogger for The Body, Robert Breining.
But let’s return to the theme of the video episode: doing what you can to help end this funding crisis, meaning, pick up the phone and call your elected officials (VoteSmart.org will tell you who they are and how to reach them). And to make it as easy as possible, the video give you a lesson on what to expect from the call and what to say. I can still find calls like this intimidating, but these instructions make it simple for you.
Thanks for watching and, as always, please be well.
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Activism means getting the word out. I hope you’ll help increase calls to our elected officials by sharing this posting. ;]
Tags: aids, help others, hiv, physician, politics
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 17 Comments »