Posts Tagged ‘hiv’
Playing the Last Scene of a Marriage
Wednesday, October 12th, 2011
“I’m not in love with you anymore.”
He said this at the dinner table as he made the first cut of his steak, a beautiful ribeye he had grilled to perfection. I put down my own knife and fork and stared at him.
“This isn’t new, or else you haven’t been listening,” he said, a bit wary of my gaze. “You knew I wasn’t happy a year ago. And we’ve just ignored it.” He took a bite and I hated him for it, for having the digestion for this.
I had dropped the butter, that’s how this started. I had been setting the table and I dropped the butter and it made a mess and the dogs were licking it up and he got mad. But it was an accident so I got mad too because he always seemed angry and I told him so and then I provided a litany of complaints about his moodiness and then he sat down to start eating his steak and
“Mark?”
and if I hadn’t dropped the butter we wouldn’t be having this conversation and I could keep pretending we were still in love with one another.
“Mark. I care about you. You know that. But this isn’t working.”
Twice, I wanted to say. Twice this hasn’t worked. In our nine years together, we had tried this twice. The first breakup was the result of my disastrous drug abuse. During our first four years together, I became an increasingly deceitful, outrageous mess. When at long last my pitiful lies were exposed and I checked myself into a drug treatment program, he ended it.
That time, that was the bang. This steak and baked potato dinner was the whimper.
I could feel the emotion swelling inside me and didn’t feel like being the first to cry, so I left the table for the bedroom. As I began heaving deep, guttural sobs I realized I was watching myself, from a distance, like a performance. I saw the way I held my body, arms wrapped tightly in a hug, knees bent from the force of the sobs. What’s my motivation? I found myself wondering, still in the midst of it. Why am I crying? How do I really feel about this?
No sooner had I asked myself these questions, tears streaming, that I posed another. And it was far more manipulative.
How should I play this, exactly?
There were so many options. The shocked and devoted lover. The vindictive injured party. The delicate, recovering addict, shaken to the core by the breakup.
I indulged in this sick game of posturing for only a moment, but it was long enough for me to spot my disease on display. It was my drug addict mindset, always looking for an angle, always trying to deflect blame or skirt responsibility or come out ahead. Despite three years of sobriety, that mindset still enjoys hijacking my emotions.
Mark, I muttered, my face wet with tears, stop it. You crazy fuck.
After the first breakup, he and I didn’t talk much. I moved back to Atlanta and, after some false starts, I finally got a foothold on my recovery. Life opened up again. I created My Fabulous Disease. I rediscovered my joy.
We began speaking tentatively to one another, then more often, and as I approached my first year of sobriety we finally admitted we still loved each other. It was such an unexpected turn of events, and so achingly romantic, that we both followed our hearts completely. I returned to Florida and we resumed our life together, minus my drug use and the dramatic sideshow that went with it.
And yet. And yet.
Within a year, we knew. We tried counseling, which only reopened old wounds and created new resentments. Something unspoken told us to stop the sessions, to not reach the finish line with so much misplaced anger. Instead, we coasted silently for another year, and we looked away.
The postscript had been written, like a paper holding an obituary for a movie star that will probably die soon. They’re just waiting to print it.
And now, despite my philosophical approach to this, my faith in my sobriety and my gratitude for my friends, I have moments when I am crushed with fear. Being alone. Starting over. Dating. And then there’s the HIV.
HIV likes giving a certain zing to relationships. It makes starting one rather tricky, what with the disclosure and the sexual negotiations and the vague fearfulness on either side. It loves ending them as well, but not always in the way you might think.
When HIV treatment drastically improved fifteen years ago, there were people celebrating the world over about their sudden renewed health and vitality. And they often marked the occasion with surprising pronouncements. “I’m going to live another thirty years,” one would muse to the partner across the breakfast table, “and not with you”
Thankfully, my HIV status had no role in the breakup. But it will surely become an issue as I navigate whatever romantic life awaits me.
I dried my face and walked from the bedroom to face him again. I knew what was true, and I held on to it tightly, unwilling to play this scene for effect or advantage. And I finally grasped what an amazing, unlikely gift had been offered to me.
We should have broken up like this the first time, I realized. It should have been this way, and now it can be.
This time, I can do this gracefully.
He was sitting at the sofa and looked up to me, sadly, hopefully, and I sat down across from him. There was a moment of mutual assessment, and we saw the truce in each other’s eyes. Some of the stress melted.
And we began to talk.
Tags: culture, family, gratitude, hiv, recovery, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 31 Comments »
Revisiting ‘The Real Poz Guys of Atlanta’
Tuesday, October 4th, 2011
During the first year of producing my blog videos back in early 2009, it occurred to me how much of my health and happiness was the result of having a solid support network. I wanted to find a way of showing this through my blog, and the result would be two video episodes that remain a true highlight of My Fabulous Disease.
What might it be like, I wondered, if I invited some friends living with HIV over to my place and the video chronicled our evening together? Was there value in showing our support and friendship? My cinema verite experiment could be inspiring… or a complete bore.
I needn’t have worried. When Craig, Eric, James and Antron arrived for dinner, they plunged into the evening with startling honesty and affection for one another. While my BFF Charles worked the camera (the man is a saint; he didn’t eat at the table with us so it wouldn’t intrude on the filming), the five of us let down our guards and shared on a variety of topics.
We talked about our mothers, and how and when we disclosed to family and friends. We talked about dating, and loneliness, and what we tell people who have just tested positive.
When “You Gotta Have Friends†was posted on TheBody.com on April 22, 2009, it became my most popular episode to date and received a flurry of comments from across the globe. So many people loved seeing a group of men with HIV supporting one another and having that level of honesty. For many viewers, simply seeing friends with HIV living happily was an inspiration.
They loved doe-eyed Antron, the 23 year old with the heartbreaking story of his mother’s reaction to learning his status. They left comments about the tattooed, sexy James, and his candid stories of sex and disclosure. Viewers loved the philosophical Craig, and his moving description of his mother’s face the moment he revealed his status, and equally, how Eric created his “HIV Team†of physicians and family to combat his disease.
As for me, I look back at this episode and wish my video editing skills were as honed as they are now, and I regret filming when my face was swollen from my initial facial filler treatment (I look like I’m welcoming you to Munchkin land). But I couldn’t have been more thrilled with the response to the video and knew that I would have to produce another episode with this amazing group.
That would happen a year later, when “The Real Poz Guys of Atlanta†was posted on TheBody.com on February 23, 2010. This time we skipped dinner and went directly to dessert, as I taught my friends how to bake my legendary brownies. Then we sat by the fire for a conversation even more intense than our last, sharing about partners lost to AIDS, our sex lives and what constituted “acting out,†and even a round of show and tell, as each of us brought something of meaning to our lives with HIV.
There’s no doubt that I will do another episode with my friends again sometime, but I wanted to update you on their lives as they are today.
Eric, who famously declined to discuss his status with most people because “I’m Southern. We don’t talk about such things,†reports that his life is getting even healthier. “I quit smoking after 32 years on tobacco, I joined a gym, I got a trainer, and I have a new consciousness on eating,†he says. “At this rate, I’m going to live forever.â€
Eric is also glad that his Mom remains one of his biggest supporters. But that wasn’t meant to be for Craig, who has lost the mother he so lovingly described in our first episode. “I am still recovering from that ongoing blow and the indescribable loss†Craig told me. “She was one of my best friends and it is still hard to really accept life without her in it.†Craig continues his work as a leading voice for gay men of color and HIV prevention.
The grief is something Eric can relate to, considering the loss of his partner Maxwell, about whom he shared in the second episode. “I don’t want to forget him,†Eric says now. “It’s not really sadness, but more a sense of him that stays with me.â€
Antron has stopped writing in the black journals he brought to show and tell, and uses his laptop these days. That will come in handy for the young writer, who has a new project consisting of poems, short stories and rumination entitled Ayo: Lost and Found.
The advice that Craig had for Antron to carefully consider “who he lets into his life, and into his bedroom†hasn’t been lost on Antron, who tells me, “I have a deeper responsibility to value myself more and form a beautiful relationship with me first before pursuing any one.†He is planning to move to New York in January, and maintains a blog for his writing.
The dating life that James was negotiating in both video episodes has slowed, and for some challenging reasons. “I seem to have developed a fear of discussing my HIV and HepB status with potential dates,†he says. “I’m back on interferon for another 48 week treatment.â€
The grueling treatment hasn’t affected his work as a massage therapist so far, but James is vigilant about the potential effect on his recovery from drug addiction. “Friends are so important right now, making sure I don’t isolate and relapse like I did during the last interferon treatment. I am blessed to have some really great friends.â€
And that sentiment is really what this project was about for me. The healing grace of our friends, and how that support comes in handy during trying times.
Do you have a strong circle of friends who know your status or otherwise have your back? I’d love to hear some of your experiences and what you might advise someone who is considering whether or not to disclose their status to their social circle.
In the meantime, my dear friends, please be well.
Mark
Tags: culture, family, gay, help others, hiv, physician, recovery, Recreation, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 4 Comments »
Finding Support in an e-Patient World
Monday, September 26th, 2011
You’re part of a healthcare revolution in cyberspace, my friends. It’s changing the way people find treatment information, relate to their doctor, and support one another. And you’re about to meet some of the marvelous people who are leading the charge.
Did you know that 80% of internet users spend time gathering health information? That makes it the third most popular online pursuit, following only e-mail and using a search engine (and yes, that means more than porn. Is your mind officially blown?). The ramifications are enormous for patient empowerment – and for the companies who want to reach us as consumers.
In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011, a conference devoted to showing healthcare how to reach patients online. You may remember from my previous video blog “Should AIDS Activists and Pharma Just Get Along?†that my relationship with Big Pharma is a complicated one, so this new episode sidesteps most of the e-Patient Conference program and focuses instead on something truly remarkable.
I participated in a gathering of twenty bloggers the day before the conference, all of us living with chronic disease and writing about our experience (watch the episode, and prepare to be inspired).
The meeting, co-sponsored by HealthCentral and Klick Pharma, was a revelation. Never have I had the privilege of meeting so many online advocates living with other health conditions – cancer, diabetes, rheumatoid arthritis, multiple sclerosis, lupus, and more – and hearing about their lives and challenges.
In a day-long session moderated by Digital Health Coalition, the group began drafting a set of values – sort of a digital health consumer Bill of Rights. It’s a work in progress (organizers promise follow up sessions to continue the process) that seeks to define and protect us as “e-patients,†such as transparency when it comes to online messages from pharma, or asking that our physicians get savvy enough to email lab results if we want.
As much as I tend to view HIV/AIDS as “terminally unique,†there’s something comforting about how much I had in common with the other bloggers. Yes, it did occur to me that I was the only person in the room with a condition that could get me arrested for having sex, for instance, but this wasn’t the time or forum to announce our differences. What we shared, and what they taught me about being a more effective advocate, was considerable.
I’ll let my new friends speak for themselves in the video. Meanwhile, check out their sites, especially if you might be living with one of the conditions they are blogging about. My fellow workshop participants were Eileen Bailey (ADHD), Ann Bartlett (Diabetes), Phil Baumann (Men’s Health), Robert Breining (HIV/AIDS), Donna Cryer (Ulcerative Colitis), Dave deBronkart (Cancer), Bennett Dunlap (Diabetes), Lisa Emrich (MS and Rheumatoid Arthritis), Amy Gurowitz (Multiple Sclerosis), PJ Hamel (Breast Cancer, Osteoporosis), Tiffany Peterson (Lupus), Jenny Pettit (Sjogren’s Syndrome, Fibromyalgia), Teri Robert (Migraine), Casey Quinlan (Cancer), Rudy Sims (Disability), Michael Weiss (Chron’s Disease), and Kelly Young (Rheumatoid Arthitis).
Finally, those who use the internet (and are discerning about what they find) are far more likely to bring ideas to their care provider, or understand side effects or otherwise take an active role in their care. So keep it up, fellow e-patients!
To paraphrase a golden oldie, the healthcare revolution will be televised… on Youtube and Skype and TheBody and Wego Health and HealthCentral and even right here, on My Fabulous Disease.
Please be well, and as always, you’re welcome to use the “share” feature below to enlighten your friends and colleagues. ;]
Mark
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PLUS…
Ready for your good deed of activism for the day? After scores of unjustified prosecutions of people living with HIV (with long sentences for spitting on cops or not disclosing your HIV status to partners even when using protection), a little sanity may be entering the scene. U.S. Representative Barbara Lee (right) has introduced the REPEAL HIV Discrimination Act to congress. It would require a review of all federal and state laws, policies, and regulations regarding the criminal prosecution of individuals for HIV-related offenses. Now here’s your job to do: visit this site to get the phone number of your elected U.S. representative, and then call to simply say “I support Rep. Lee’s REPEAL HIV Discrimination Act.” Then, treat yourself to some ice cream. Ready, set, go!
Since “the Berlin patient” Timothy Brown was effectively cured of HIV last year, new energy and enthusiasm has been created around finding a cure for HIV disease, not simply finding treatments. Nelson Vergel (near right, with Timothy Brown) dares to ask “Is a cure for HIV possible in my lifetime?” in his new video blog at TheBody.com. “Everyone can do something now to raise awareness and funds not only for research but also for advocacy and education in this important new and expanding area,” Nelson says.
No sooner had I posted my piece last week on the demise of my red hair (“The Twilight of the Redhead”) did this news item appear: the world’s largest sperm bank is no longer taking donations from redheads. And the reason is even more bruising: a lack of demand. “There are too many redheads in relation to demand,†the sperm bank’s director said. “I do not think you chose a redhead, unless the partner — for example, the sterile male — has red hair, or because the lone woman has a preference for redheads. And that’s perhaps not so many, especially in the latter case.†It ain’t easy being orange.
Tags: aids, culture, help others, hiv, physician, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 14 Comments »
The Twilight of the Redhead
Tuesday, September 20th, 2011
According to family lore, my arrival at birth with a full head of orange hair was met with shock and awe. My five older siblings ran the gamut from blond to dark brown, but they otherwise lacked my peculiar genetic mutation. Although the hospital nursery staff was abuzz with delight, my own family debated whether the color would last while they double checked the identification tags.
It lasted. In fact, the color bloomed like a Van Gogh painting. Before long I would learn the price of being different… and how intense childhood ridicule can be.
Look, it’s Freckle Face Strawberry! Howdy Doody. Bozo. Opie. I didn’t know whether to chop off my hair or hide underneath it. Only little old ladies and a few teachers seemed to appreciate it, but their cooing and stroking – they always needed to touch it, like a lucky charm – never endeared me to the bullies at school.
When puberty hit and the startling orange hue crept further down my torso I was beyond mortified. How could my body play such a cruel joke? Did this adolescent sissy really need another reason to be kicked and taunted? I actually made it through two years of junior high gym class without once taking a shower, usually by fiddling around at my locker – folding and arranging my clothes, feigning trouble with my combination lock – until it was safe to get dressed.
When I came bursting from the closet while in high school, I managed to finally celebrate my red hair along with my sexuality, and reveled in both. I mastered every hair product known to man, blow drying and spraying my head into a Farrah Fawcett extravaganza before a night out at the local gay bar. I discovered the men who loved redheads, and at last, I’d found the ideal purpose for the trait that once humiliated me.
It even became crucial to my vocation, during a brief stint in my twenties in television commercials. Casting directors saw dollar signs on my head, and I became the freckled pitchman for everything from McDonalds to Popeye’s to Barq’s root beer. I treated my hair as a gay Samson might, with the latest gels and shampoos and conditioners, and in return it made me money and got me laid.
Whatever I became through the years, this single aspect of my identity pre-dated everything. Before the writer, before the AIDS activist and the drug addict and the actor and the childhood sissy, I was a redhead. From the very womb.
And then, not quite. Sometime in my thirties, the color began to slowly drain from my scalp. The orange and reds eventually surrendered to a strawberry blond, and even those tones became weaker, like watering down a pitcher of Kool-Aid, as my fiftieth year approached.
It must sound ridiculous, but I felt the loss deeply. We had been through so much together, my red hair and I.
I tried to take heart in having, whatever the color, a full, thick head of healthy hair, guaranteed for life by the family gene pool. That is, until a few months ago, when I stood in the shower and felt strands of hair sliding down my face, in a massive march from my head to the drain. After decades taking HIV medications, I had begun a new treatment regimen and its woeful side effects were ruthless and immediate. Within weeks my hair was thinner, dulled and brittle to the touch.
One of my private, most selfish fears has been realized. I have AIDS Hair.
But while removing clumps from the shower drain is a jolt to my vanity, it isn’t the trauma it might have been. After living with HIV for nearly thirty years, I’ve witnessed how creative it can be in its cruelty, down to the slightest of indignities. The sudden damage to my hair has been worrisome, I’ll admit, but part of me knows that it had long since served its purpose. There is something correct, even poetic, in this twilight of the redhead.
Years ago, as I began rebuilding my life after years of drug addiction, my therapist made a withering observation. “You’ve got no second act, Mark,†he said after one of my self-absorbed ramblings. “You make a nice first impression. But then what? Not much.â€
The work that I’ve done in the years since his pronouncement have taught me the value of more important traits, of lending a hand or paying attention to friends or standing up for our community. And this evolution appears to have swept away one of my most stubborn sources of willful pride.
The last decade has given me the gift of other, more meaningful assets. They lie beneath, away from the gaze of strangers and first impressions.
My best features are now visible only to those who really know me. And they are just beautiful.
Mark
(I hope you’ll consider sharing or re-posting this, now or whenever you run across something here you appreciate. This blog has become a wonderful outlet and voice for me, and I must admit, I love new visitors!)
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PLUS…
Sometimes I blurt out a blog posting that belies my supposed serenity and enlightenment, like the rant I posted on The Bilerico Project (“For God’s Sake, Put Your Shirt On”) about gay guys who can’t seem to keep their clothes on when posting pictures on mainstream social media sites like Facebook. Pecs and traps and biceps? On glorious display. The friends who are beside them in the photo? Cropped out. Guys will even chop off their own faces, as not to distract from the wonder that is their abs (and, as we all know, it’s not the friends you keep, but the abs you maintain). Anyway, I had some fun calling them out about it, and the comments have been kind. Well, except for the twenty-something that claimed I was just jealous I wasn’t sleeping with young hotties. Umm, ouch.
My favorite HIV/AIDS online resource, TheBody.com, has just opened a brand new section on the importance of drug adherence and tips on maintaining your regimen. As part of it, I was asked to produce some short “Day in the Life” videos of people living with HIV and how they fit their pills into their schedule. It was terrific to produce a video about Damaries Cruz of south Florida (right), who shares her misgivings about starting therapy at all, and her collaborative relationship with her physician. And the story of Tree Alexander is an inspiration, as he works to maintain his treatment regimen even during a period of homelessness. The reaction of his large family to his HIV diagnosis was wonderful and astounding: they threw him a “stay healthy” party!
Tags: acting, Aging, culture, family, gay, gratitude, help others, hiv, meth, recovery
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 11 Comments »
How the Denver Principles changed AIDS (and health care) forever.
Wednesday, September 14th, 2011
You must know this, because it matters. Because it has already changed your life and you may not even realize it.
It was 1983. Just a year prior, Acquired Immune Deficiency Syndrome (AIDS) became the fearful nameplate for the murderer of gay friends and lovers. The virus that caused it, HIV, had only been identified a few weeks earlier. Amidst this atmosphere of unremitting grief and fear, a group of activists met in Denver as part of a gay and lesbian health conference. Among them, a dozen men with AIDS. (And among their number, the inspirational Michael Callen of New York City, pictured at right, and Bobbi Campbell of San Francisco.) They were about to do something that would change our response to AIDS — and health care in general — forever.
As the conference drew to a close, the activists asked to address the attendees. Rather than having a report presented about the state of the AIDS crisis, they wanted to speak for themselves. If the word “empowerment†hadn’t yet been a part of the health care lexicon, it was about to be.
The group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this: “We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ‘people with AIDS.’â€
The seminal moment in AIDS activism was arguably those few minutes, when the principles were outlined by these brave “people with AIDS.†Identifying themselves as such, that alone, was startling at the time. How could they not be seen as anything but victims of an arbitrary and cruel killer? But they would have none of it. And they did not stop there.
They outlined 17 principles that covered everything from health care decisions to civil rights to sexual conduct. And their impact on all of us is so obvious today it can easily be taken for granted. Please honor their service and read on.
They demanded that physicians see their patients as “whole people,†and provide “accurate information.†They believed their opinion on their care should be awarded equal weight, and this was revolutionary. The next time your doctor consults you about a change of medications or whether a diagnostic test may be required, you can thank The Denver Principles.
They asked “all people†to fight against AIDS discrimination in the workplace and in housing, which was a provocative concept in the fearsome days of 1983 when people recoiled from those with HIV.
Astonishingly, they even advocated for “as full and satisfying sexual and emotional lives as anyone else†for people with AIDS. Imagine that, at a time when a new blood- and sexual contact-driven disease was in full bloom, a group of people suffering from it wanted sexual rights. Amazing. And yet today, if you are HIV positive and disclose your status to potential partners without feeling like a diseased pariah (or you have observed sexual evolution, like serosorting and sex clubs for positives), you can thank The Denver Principles. For that matter, if you’re HIV negative and negotiate sex with partners of any stripe, you can thank the Principles for believing that we all deserve a satisfying sexual life.
While gay men were the designers of the document, The Subversive Librarian notes that this was a situation in which lesbians and gay men worked together really effectively. As Walt Senterfitt wrote in 1998: “Part of the widespread acceptance of the notion of self-empowerment must be attributed to lessons learned from the feminist and civil rights struggles. Many of the earliest and most vocal supporters of the right to self-empowerment were the lesbians and feminists among the AIDS Network attendees.â€
A clear line can be drawn between how all of us participate in our own health care decisions and The Denver Principles. It has influenced the doctor/patient relationship in every disease category, benefiting millions of patients.
Longtime activist and POZ Magazine founder Sean Strub delivered the keynote speech at the Campaign to End AIDS’ 5th Anniversary event last year. He devoted his powerful remarks to the historic importance of The Denver Principles and announced a plan to create a Denver Principles Empowerment Index that will hold AIDS groups accountable to the people they serve. That work continues today, with a planned meeting of activists underway to map the criteria of the Index.
Sean knows a thing or two about accountability. When I worked for various AIDS organizations through the 1980’s and 90’s, we were shaking in our boots each year when POZ Magazine produced their chart outlining which of the country’s AIDS organizations met certain criteria. The chart rated things like financial transparency, the cost of fund raising, and how many HIV positive people served on the Board (for which, by the way, you can thank The Denver Principles, which demanded people with AIDS “be included in all AIDS forums.â€)
The Empowerment Index that Sean and others are creating (he’s open to input) would chart similar criteria for AIDS organizations and other health care providers, by measuring the degree to which their clients feel empowered and involved in their own decisions. It would tangibly rate things like fund raising, transparency, HIV+ representation and the delivery of services.
So the Denver Principles live on. A list of profound basic rights were outlined during the dawn of this epidemic that continue to have an impact on us today. Anyone facing a chronic illness should laud the amazing journey and profound importance of this document.
(When I was invited to participate in an “e-Patient Bill of Rights Roundtable” at a conference for internet-based health bloggers and web sites next week, The Denver Principles immediately sprang to mind. So why not revisit this part of our history as people living HIV/AIDS and their advocates? This is a revised version of my posting from May 4, 2010. — Mark)
Tags: aids, gratitude, hiv, physician, politics
Posted in Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 7 Comments »
Those Doggone Days of Summer
Friday, September 9th, 2011
July and August were almost frantically productive for me, and I’ve followed it by the longest period of, well, nothing, since I began producing this blog. Sorry. Sometimes an HIV guy just needs to lay around and catch up on Top Chef and Real Housewives (God bless you, Bravo).
Hopefully you caught my most recent videos, such as the my examination of activism in “Should AIDS Activists and Pharma Just Get Along?” (complete with red paint foisting), or the video update on my facial filler procedure with Dr. Gerald Pierone (very informative but not for the squeamish), or the helpful tips for saving money with the knowledgeable Jason King (right) of AIDS Healthcare Foundation, whom the camera adores, and about whom I am harboring a jealous resentment (I may be petty but my grammar is pristine). And finally, it’s always ironic when hours of video editing can’t compete with one written posting the comes straight from the heart, like my tribute to Facebook putting my life together again.
But moving on.
If anyone deserves being highlighted in the media for his commitment to HIV prevention, it’s Jim Pickett of the AIDS Foundation of Chicago. In a well-written profile of Jim in the Windy City Times, you can follow his journey from waiter to activist to the man touting rectal microbicides as the next best weapon in our HIV prevention toolbox (I keep finding myself wearing a sticker proclaiming “I have Rectal Pride!” after visiting his booth at conferences). I’ve admired Jim’s work for years and this fun profile explains why. “Expecting everyone to use condoms all the time is ridiculous,” said Jim in the article. “People don’t want to use condoms their whole life. As great as they can be, there are a lot of issues with condoms.”
At the recent 2011 HIV Prevention Conference in Atlanta hosted by the CDC, I was thrilled to meet some of the dedicated members of the HIV/AIDS prevention team. What was even more satisfying was seeing their new prevention campaign targeting black MSM’s (“men who have sex with men,” who don’t always identify as gay). To date, there have been limited data about the factors contributing to the high burden of HIV among black MSM, particularly those who are young – and yet the latest CDC data show that new infections among this group are increasing every year. Fortunately, the CDC is focused strongly on this population, and previewed a major new campaign being developed to increase HIV testing among black MSM – called “Testing Makes Us Stronger†– as the next phase of its ongoing Act Against AIDS campaign.
Thank God I’m clean and sober and alive today. If I was still an active crystal meth addict, I would have missed an astounding recovery conference during Labor Day weekend, which introduced me to some amazing people and strengthened my resolve to keep working to restore and rebuild my life. While I’m always coy about which method of recovery I have chosen (I don’t wish to promote one over another), I will tell you that my camp alter ego Anita Mann (left) wasn’t coy at all, and — get this — she actually sang live during one of the evening’s entertainments. Alas, neither she nor I sing very well, but the message of recovery is clear, and she shares some funny, wise words with the audience after her song. Watch the clip here, but be kind.
The emotion of “We Were Here,” the documentary about the darkest days of the AIDS epidemic and its effect on a group of gay men, can be felt just by reading the reviews, like the rave it just received in The New York Times. I’m almost nervous to see it because I know the trauma and grief it could summon, but I also know I absolutely must. If you can’t find it playing at a festival or cinema near you, then for goodness sake, go directly to Netflix or some other DVD rental site and put it on your list. I often speak of honoring the past — in fact, my favorite video on this site, “Once, When We Were Heroes,” recounts those days and is always worth another look.
My (healthy?) fixation on repairing my facial lipoatrophy (also known as facial wasting) continues, and I am pleased to report that I have begun treatments with Artefill, the “permanent facial filler” product, under the continued care of Dr. Gerald Pierone in Vero Beach, Florida. My past treatment with other products is well documented, but I’ve got to say that these results are well beyond those of Sculptra or Radiesse, truly. The bad news: Artefill is not approved specifically for lipoatrophy, so there are no patient assistance programs for those of us with HIV, making the treatment expensive (in the thousands of dollars). While I don’t expect many of my fellow HIVers can afford it, I felt compelled to share with you the very positive results.
I am the MC for the annual HIV Poz Cruise Retreat, set for this November 5-12 to set sail from Ft Lauderdale. There was such an abundance of fellowship and acceptance last year that I had to do it again. There are sometimes last-minute rooms and cancellations, so if you would like to check it out be sure to visit the web site. You can also watch my video blog from last year, which gives you a great feel for the event and the fun people aboard. Kudos to the dedicated Paul, a long time AIDS advocate and man living with HIV, who has shepherded the cruises for the last nine years.
Some of the most progressive events for building gay male community and preventing HIV are being developed in the Florida panhandle, of all places. On Monday October 10, I’m honored to be participating in the “Our Gay Generation” forum for gay men in Pensecola, which will explore what it means to be a healthy, satisfied gay man today by looking at our past and rededicating ourselves to one another. Sponsored by the Oasis Community Center (and Butch McKay, the formidable force behind the annual Positive Living conference), the forum transcends political issues like gay marriage, and focuses instead on personal satisfaction, community, and the value of friends. Later in the month, the same group will host a ManReach retreat for 40 gay men at a remote retreat center. Contact Oasis for more information on either event.
Whew! Okay, I’m caught up. Thanks for your patience, my good friends, and please be well.
Mark
Tags: aids, culture, drag, gay, gratitude, hiv, lipo, physician, recovery, Sculptra
Posted in Anita Mann and Acting Gigs, Family and Friends, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 8 Comments »
7 Ways to Save Money on Meds
Tuesday, August 16th, 2011
With all the doctor appointments and wellness activities we engage in, living with HIV/AIDS can be a full-time job. And the truth is, it doesn’t pay very well. We’ve all been feeling the pinch of tough economic times. So I hope you’ll find some savings in this new video blog, “7 Ways to Save Money on Meds.â€
Jason King, a pharmacy specialist and patient advocate at AIDS Healthcare Foundation in Ft Lauderdale, was kind enough to give me a tour of their “Out of the Closet†thrift store and then sit down to discuss ways to save money that your pharmacist might not be telling you.
Most of these tips, by the way, can also apply to medications which are not HIV specific. And we have even included a tip just for our HIV-negative friends. I’m an equal opportunity money saver!
I’m amazed at how many people don’t know about co-pay assistance cards, a program in which the pharmaceutical picks up your co-pay costs. It’s a simple program to use without any income restrictions, and you can save up to $400 per year per medication! Fabulous. Your pharmacy or physician should have cards for you, or Google your medication along with “co-pay assistance†and you should find cards or information to print out.
Specialty pharmacies are a smart move these days. They focus on a particular disease, like HIV, but provide a full spectrum of medications like other pharmacies. The difference is usually service: their technicians are trained in HIV and know more about interactions, for instance, and they are more likely to point out savings opportunities like co-pay cards and patient assistance programs.
When I recently chose a new pharmacy, I went to a specialty pharmacy and just asked them, what can you do for me that Walgreens doesn’t? A lot, as it turns out. They offered free delivery and free shipping anywhere in the continental U.S., and they said they would provide free supplements with a prescription from my doctor! I made the switch, and along with my HIV meds, they provide my vitamins and fish oil at no charge. It pays to ask about perks.
AIDS Healthcare Foundation pharmacy isn’t the only HIV specialty pharmacy in town. Others include BioScrip and Commcare, and they will all ship to you if you don’t have one in your area.
I was intrigued by the idea of buying generic meds from out of the country, but kept getting the icks. What if they make these meds in some ratty factory somewhere with no quality control? I mean, ick.
A little research put my mind at ease. The helpful folks at AIDSDrugsOnline.net reminded me that people have been purchasing medications from Canada for decades because of the low cost. And India, which produces most of the generic HIV meds available, is the 2nd largest pharmaceutical industry in the world, with FDA-approved facilities.
And the prices. Wow. No wonder people who are without insurance (or in the doughnut hole) are purchasing their meds this way. And there are many others players in this game, such as Canada Prescriptions Plus. Shop around.)
The laws are vague about the legality of this, but at any rate are not enforced. Generally speaking, it appears that people can purchase up to a 90-day supply of a medication from other countries as long as it is for personal use. If you’re shopping around and want to be sure the manufacturer is legit, visit pharmacychecker.com to do your research.
Compounding pharmacies, like APSMeds.com, are able to create special versions of generic medications in whatever strength or format (pill, capsule, liquid) that your physician requests. And their product is a lot less expensive than you are paying for the medication in its regular form! Since they only deal with generics, this is a tip for medications like testosterone gels or Lipitor or Flomax.
Finally, there are patient assistance programs offered by the pharmaceuticals that you might qualify for. There are doughnut hole programs for people with insurance that cover your meds when you fall into that financial abyss, and other programs for people with no insurance at all. The best resource online to navigate your way through these programs is NeedyMeds.org.
Between the co-pay cards and the supplements provided by my specialty pharmacy, I’ll be saving hundreds of dollars on my medications this year. I hope you’ll find similar savings.
Now, if we could create universal healthcare in the great United States, we would not be scrambling to pay for medications, and people from other countries would stop snickering and shaking their heads at the necessity of this blog posting.
Feel free to share/post/like this posting, in case it might save your friends some money! In the meantime, please be well.
Mark
Tags: aids, help others, hiv, physician
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 10 Comments »
I’m Gonna Wipe That AIDS Right Off of My Face
Tuesday, August 2nd, 2011
Several years ago, I told someone that I was HIV positive before I agreed to his invitation for a date. “Yeah, I know,†he casually replied, and then he looked a little embarrassed, as if he shouldn’t have said it. It was too late, of course; I knew exactly what he meant. He knew my HIV status because of the appearance of my face.
I was crestfallen, and felt something close to shame, certainly embarrassment. Why is it that I can produce this blog, proudly march with HIV POSITIVE on my t-shirt in gay parades, and even write a book about coming of age during the dawn of AIDS — but I get upset if someone can tell I’m positive by how I look?
When I choose to disclose, privately or publicly, it’s on my terms. I choose how and when to tell you. I want you to know.
Facial wasting (known as lipodystrophy) takes that choice away. It’s as if the disease is intruding, is taking the upper hand somehow, and worse, taking away my decision about when and to whom I disclose my status. And as much as I want to claim “Most Out Poz Guy Ever,†I don’t like wearing HIV across my face.
Most of us know “the look.“ It’s the telltale gullies and sunken cheeks associated with longtime HIV infection or (more likely) medications (right). Many of my friends and colleagues in this struggle suffer from it, and they may either be comfortable with it, proud of it as a badge of honor, or simply resigned to it. I salute us all, whether our features tells our HIV story or not. But meanwhile, I’ll do what I can to wipe that shit off my face.
A few years ago I visited Dr. Gerald Pierone in Vero Beach, Florida (regarded as the leading expert in fillers and one of the Ask the Experts team at TheBody.com), and I documented that first visit and my facial filler treatments in a video blog, Treating My Facial Wasting (left). In that video I focused on my own attitudes — Was I ashamed? Trying to look younger? Simply vain? — and on the procedure process itself. Nearly a year later I revisited Dr. Pierone and got another treatment and documented it in my video blog, A Facial Wasting Update.
In this video episode of My Fabulous Disease, I revisit Dr. Pierone for a new treatment with the facial filler products Sculptra and Radiesse. While I’m there, I learn enough about Artefill, the only FDA approved permanent facial filler, to make me strongly consider the product the next time my face needs fluffing.
This video also focuses on very specific information about the actual costs of facial filler treatment. Both Sculptra and Radiesse have patient assistance programs that significantly reduce the cost of the medication, but you still need to pay the physician to do the procedure, and that price can vary. TheBody.com has a great article that outlines all the facial filler choices and how much they cost.
Tip: don’t allow any street corner vendor (or gym or even doctor office) to inject stuff into your face. Do some research and above all, find a physician who has done this many, many times (over 500 would be a good start). Be a smart shopper and empowered patient and ask about their experience level first.
I hope you find the video helpful and that you aren’t too afraid of needles!
In the meantime, my friends, please be well.
Mark
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PLUS…
Compelling, sexy, and courageously paced, the short film “SLOW” by filmmaker Darius Clark Monroe is worth your time. In 13 minutes, the film takes two African-American men on a sexy journey in which one of them discovers that the fast way (to sex, to real intimacy) isn’t the only way. If you are working with MSM outreach, this is a wonderful discussion tool. If you appreciate confident film making with a gay theme, this is it. Director Darius Clark Monroe told me he had nothing to add to the film’s message: “everything I wanted to say is expressed in the work…” and indeed it is. The video is NSFW, due only to brief nudity, but otherwise this flick wants to stimulate you mentally much more than by parading naked men around — a lazy tactic employed by most gay films today. I hope you’ll check it out!
Tags: aids, hiv, lipo, physician, Radiesse, Sculptra
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 4 Comments »
Should AIDS Activists and Pharma Just Get Along?
Tuesday, July 12th, 2011
I’m having an identity crisis. Am I an AIDS activist, ready to question authority and demand high standards of service for those living with HIV/AIDS? Or am I a “resource†for the pharmaceutical industry, so that they might craft more effective community programs that will lead AIDS patients to “care.â€
And that care, no matter how they frame it or how sunny the smiles of their community liaisons, ideally would lead patients to their HIV drug product line.
In this video episode of My Fabulous Disease, I take you along to a community advisory board meeting (CAB) for HIV drug manufacturer Janssen Therapeutics, formerly known as Tibotec. There was something about the cordial way in which the invited HIV advocates provided helpful feedback to the pharmaceutical executives that felt… a little strange.
Although I have agreed to keep the particulars of the meeting private, I will say that there were no fireworks on display – or any real antagonism to speak of. We advocates (“activists” seems like too strong a word) offered our best advice to Janssen, they appreciated it very much, lunch was served, and everyone left happy.
And I felt as if I had failed somehow. I had allowed the topics to be entirely in the hands of our hosts, and any issues that deserved discussion but were not on our elegantly typed agenda – educating patients about treatment risks, or, God forbid, drug pricing – were never discussed. I didn’t feel like much of an activist. I felt like a focus group member.
It’s very possible that my attitude here is outdated. In the early days, we took to the streets because societal apathy and ignorance demanded it. We protested and threw red paint and otherwise shamed the pharmaceuticals into better medications, broader access and more community involvement. Those battles were waged (and largely succeeded) many years ago, while pharma has come through with an astounding arsenal of successful HIV medications. Why does something deep inside me resist civil dialogue that advances our mutual interests? Am I living in the past, being an activist without a cause?
Clearly, we have some common goals, chief among them HIV testing and access to treatment. And pharma has resources that community organizations could only dream of, so advising them on creating the best campaigns possible (to get tested, to “get into care”) makes sense. So why was I so ambivalent?
Activism should make people uncomfortable. Just ask Larry Kramer. I watched the late, great Martin Delaney, founder of Project Inform, demand in similar meetings that more be done in terms of drug efficacy and proper data and experimental drug access. He made me very uncomfortable and I was on his side. Martin usually got what he wanted. And he wanted it for you and me.
At least, through this video, I get an opportunity to discuss some pressing concerns not covered in the community meeting. I question some basic assumptions, such as whether our hard work on the ADAP crisis is pulling attention and resources from the “big picture†of pharma drug pricing and generics, and I offer an indictment of our U.S. health care system for good measure.
There are still confrontations to have and tough arguments to make, and the agendas of advocates and pharma alike should always be questioned.
It just might be a little uncomfortable.
Mark
(“Enjoy AZT” image credit: ACT UP New York)
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PLUS…
This blog is officially an “award winning” blog! The hard working folks at the ADAP Advocacy Association (aaa+) have honored me — and I most sincerely am quite honored — with an award for Social Media Campaign of the Year. The award was part of their first annual ADAP leadership awards dinner, held as part of the ADAP conference held in Washington, DC. aaa+ was impressed with my video blog about the ADAP summit last year, particularly with the simple instructions it gave on contacting your elected official about funding ADAP (it’s not too late to do that, you know). I am in good company: other award winners include Dab “the AIDS Bear” Garner, Butch McKay of the Positive Living Conference, and even my local pharmacy patient advocate here in Ft Lauderdale, Jason King (no relation) of AIDS Healthcare Foundation Pharmacy.
I may not be on the singles market, but I sure do appreciate the advice provided by AARP (!) in their online feature, “The Gay Man’s Guide to Dating Over 50.” Most of the piece, by gay writer Dave Singleton, is solid self-esteem building, which is great advice for any age. I’m particularly guilty of being age conscious and grieving my distant youth, so I needed to read this: “Give up trying to be perfect, too, especially if that’s a code word for ‘young.’ Yes, it’s important to take care of your body and your health, but no need to obsess. Instead of trying to be 25 again, get comfortable in your skin. Feel good about your body. That way, when someone touches you, they’ll really feel you, and not a bundle of self-critical tension. Think more about keeping a sparkle in your eyes and less on fighting the fine lines around them.” Maybe next time, Dave will offer a little safer sex advice for those over 50 who actually get lucky.
You may know that, in a 2010 CDC study of 21 major cities, 1 in 5 gay men were HIV positive. But did you know that half of them do not know they are positive? And that young black and Latino men under 25 were the least likely to know their status? Gay Men’s Health Crisis (GMHC) in New York is hoping to change that in their new “Kiss and Tell” campaign. “Kiss & Tell” encourages black and Latino young gay men to have discussions with partners about their sexual history and HIV status, and includes education, networking and skills training. “This campaign reinforces GMHC’s ongoing commitment — since our earliest days — to addressing homophobia and reducing the spread of HIV among gay men,” said Marjorie Hill, PhD, Chief Executive Officer of GMHC. “The campaign directly challenges homophobia, and acknowledges the value of relationships in the lives of young gay men while encouraging dialogue.”
Tags: aids, hiv, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 20 Comments »
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 »