Posts Tagged ‘help others’
The ‘My Fabulous Disease’ Holiday Spectacular!
Tuesday, December 13th, 2011
My mother’s home here in Shreveport, Louisiana, was fraught with excitement last week. Christmas decorations littered the living room, the almond scent of cookies filled the air, and last minute phone calls and arrangements made it all feel like a major production was underway.
And there was. The event that had everyone scrambling was held on a Sunday afternoon, when siblings and extended family arrived for the taping of The ‘My Fabulous Disease’ Holiday Spectacular.
Now just take that in for a moment. My family was enthusiastically participating in a video about my life with HIV. And they were much more concerned with choosing a fun holiday outfit than being publicly associated with their HIV positive relative. For them, sitting down for an interview about my HIV status, well, that was the easy part. They had no problem being candid about my HIV, as you will see.
I am an extremely blessed and fortunate man.
When I was young, I remember watching “The King Family” on television (right), a big happy bunch that sang really well and wore lots of matching outfits. I was starstruck, and always wondered if that King family might bear some relation to mine. And if they didn’t, would they let me come be on their show anyway?
Well, today, I’m proud of my own family for displaying our dubious talents, and by going a big step further by discussing the importance of supporting those of us living with HIV/AIDS. For far too many, the difficulty in disclosing our status — or the result of doing so — has distanced them from the people they need most during times of challenge.
The Holiday Spectacular includes some family greetings, a cooking segment with Mom (you’ll want that divine almond scent wafting through your home, too), some holiday drag, a surprise here and there, and even an appearance by the big man himself, Santa Claus.
You may remember my mother from “What it Feels Like for a Mom,” a bracingly honest video created for Mother’s Day. You might also remember my gay brother Dick, who made an It Gets Better video with me. He was also one of the main subjects of the award winning “Once, When We Were Heroes” posting I made for World AIDS Day several years ago. But today, you’re also going to meet sisters, nieces and in-laws who have special holiday greetings just for you.
Enjoy the holiday special, my friends. I hope you’ll share it with anyone that could use some holiday cheer, or needs a reminder that they are loved. And as always, please be well.
Mark
p.s. As promised in the video, here is the recipe for Mom’s Christmas Cookies. I’m certain they’re fantastic for your t-cells.
(Note: Mother uses a MIRRO Food Press, a device that must have been manufactured during the Eisenhower era, judging from the faded instruction manual she still keeps handy. I found one on E-Bay for you for less than four bucks, or you can use a more modern appliance, if you must. I don’t guarantee the cookies will taste the same!)
Time: 10-12 minutes… Temp: 375F… Yield: 7 dozen
1 cup shortening
3/4 cup sugar
1 egg
1/8 tspn salt
1/4 tspn baking soda
1 tspn almond extract
2 1/4 cups sifted flour
Green food coloring
1. Cream shortening, adding sugar gradually
2. Add unbeaten egg, dry ingredients, flavoring, and a few drops of food coloring. Mix well.
3. Fill the cookie press and form cookies on ungreased sheet. Sprinkle with sugar and bake.
4. Frost and sprinkle something fabulous on top of them (this is Mom’s provocative departure from the original recipe. That’s just how she rolls.).
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Tags: aids, culture, drag, family, gay, gratitude, help others, hiv, recovery, Recreation
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 21 Comments »
The Value of Asking for What You Want
Tuesday, December 6th, 2011
Remember when we were little, and if we wanted something we simply asked for it? It felt easy. It seemed natural. And if there was really something special we had to have, there was a golden opportunity every year to ask the person who made all things possible. Santa Claus.
But then we got older, and life became more complex, and we were told it was better to give than to receive. Asking for what we wanted felt selfish, and many even a sign of weakness.
I wish we could look at this differently. Admitting we want something can be liberating. It acknowledges we are human, and there is grace, beauty even, in revealing our need and being vulnerable and allowing someone to help us.
Just because we don’t ask for toys anymore doesn’t mean we don’t want anything. We want friendship. We want to be accepted. We want our health. Maybe it’s asking a friend to listen, or wanting a medication with fewer side effects.
Just saying, I need this. I want to feel better. Or, I need you.
Wanting is not limited to children, my friends. But we might take a lesson from their transparency. Sometimes the answer, the help we need, the gift waiting for us, will only appear when we take a chance, when we finally have the courage to ask for what we want.
Happy holidays, and please be well.
Mark
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(I don’t think I’ve ever been more excited about a video blog than the one premiering here next week: The “My Fabulous Disease†Holiday Spectacular! A dozen of my relatives have come together to bring you comedy, Christmas cookies, a little drag, a visit from Santa — and some very candid feelings about loving a family member with HIV/AIDS. I hope you‘ll come back next week and meet the family! — Mark)
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PLUS…
A word, if I may, about my recent posting “The Long Road Home from Relapse,” which managed to break traffic records on my blog, generate amazingly supportive comments, and also became its own source of concern among some of my fellows in recovery. As a few of the comments suggested, my drug relapse was a serious event that even I may not fully appreciate just yet, much less be able to distill its lessons to my readers. Some felt that writing about it so soon after the fact seemed cavalier. I’d like to say that my actual recovery process — the work I do on a daily basis to rebuild and maintain a clean and sober life — involves many things that are completely unrelated to my writing. It is ongoing and intimate and I take it very seriously. I considered withholding the relapse from my blog, but it just felt dishonest not to talk about it. My point is, there is work ahead for me that I hold dear and will keep to myself, my sponsor and my God. As Tony Kushner writes in the last line of Angels in America, “the great work continues.”
The madness continues of criminalizing those with HIV who do not (allegedly) reveal their HIV status to their partners, and new cases are piling up around the country. These include many prosecutions in which protection was used and no transmission occurred. But only now have we been able to hear the voices of those who have experienced this Kafkaesque nightmare. In his upcoming documentary “HIV is Not a Crime,” AIDS activist and writer Sean Strub gives voice to the “criminals.” Their stories are riveting and heartbreaking, like that of Nick Rhoades, right. You can view a terrific trailer on YouTube, and I dare you not to let it make your blood boil, positive or not. I urge you to take a look and get educated on what is becoming a defining HIV issue for our time.
Did you catch all the media attention last week stating that people with HIV aren’t taking very good care of themselves? Oh yes indeedy, the news reports, with headlines like Few in US with HIV have virus under control, and HIV Out Of Control In US Patients, seemed to suggest that it was people living with HIV who somehow haven’t been doing the right thing to maintain their health. And that’s a load of hooey, as my dad used to say. It turns out that the reports were misrepresenting a new CDC study showing that less than half of HIV patients have access to proper treatment. As in, not their fault. This distinction was made in an eye-opening blog posting by Housing Works, in which the actual study vs. the media reporting is clearly explained. “We are facing major budget cuts in homeless services, housing, testing and prevention,” blogger Kenyon Farrow states. “These all prevent people with HIV from staying healthy and make many more people vulnerable to infection… By focusing media scrutiny on government officials, the public would be better informed about who’s really ‘out of control.’â€
The Windy City Times continued a remarkable year-long commitment to covering AIDS this week, which is really a story in itself — a gay paper intent on maintaining visibility of the crisis in commemoration of the 30-year milestone. So I am especially excited that the paper chose to run a profile about My Fabulous Disease as part of their World AIDS Day coverage. Writer Joe Franco, intrepid journalist that he is, took the time to both interview me and actually watch most of my videos, if you can imagine. In his piece he manages to discuss AIDS, community, comedy, drug addiction and drag. In other words, it’s a fair representation of what you get around here on a regular basis. My mom loved it.
Tags: culture, family, gratitude, help others, hiv, politics, recovery, Sexuality
Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 6 Comments »
The Long Road Home from Relapse
Tuesday, November 29th, 2011
Florida highways have lovely rest stops. You would expect that from the Turnpike, where toll booths charge a premium every so often, but the manicured picnic areas continue even as you drive further north and onto I-75.
I’m on a cement bench in a concession area, chomping down corn chips and a Mountain Dew, away from the dog walkers and the families gathered at picnic tables, when I notice that my jeans are gathered sloppily around my waistline, cinched so much tighter than before. How much smaller has my waist become in such short a time? I wonder. One inch? Two?
People sometimes stroll near me on their way to the restrooms, and I keep my eyes down, afraid I might look too disheveled for their comfort, or worse, that my shame might be clearly written across my face. That they might see what I’ve done, and return a glance of judgment or pull their children closer.
The self pitying tone of these words doesn’t suit me. Pity is such a useless emotion at a time like this. Let me start again.
The drug relapse came over me like a sickness, as if I was coming down with something, slowly, over weeks. The breakup with my former partner last month in Ft Lauderdale had been cordial, and he and I continued living together while I made plans to relocate back to Atlanta. First, though, Thanksgiving would be spent with his family, as a final goodbye and a chance to show our unity — and of what remained of our broken love — during this trying time.
But my disease of addiction had already begun rearranging my thoughts, shuffling my priorities in a bid for dominance over the vigilant recovery I had practiced, proudly and successfully, for nearly three years. Small changes crept into my behavior, not about drugs precisely, but other, vaguely related habits that had once accompanied my drug use.
A return to the gym and a shallow fixation on my body. Smoking, a habit broken for two years, returned in secretive fits and starts. A feeling of entitlement — to do as I pleased, to eat junk or get laid — swept over me like a declaration of freedom that hid its true intentions in the fine print.
And then the clarion call became more explicit, as involuntary images of using drugs bombarded me, plaguing my sleep and my daydreams. But while my memories of life as an active addict had previously been reduced, finally, to dark and sinister snapshots of a pitiful existence, these new images were more seductive, promising euphoria, fast sex and most of all, a lurid escape from my own feelings.
When my former partner left town on business the week before Thanksgiving, the drug addict inside me made a break for it.
It’s startling, really, the speed at which a recovered crystal meth addict, filled with a sense of purpose and a devotion to helping others dealing with this disease, can be transformed into a selfish liar. About as long as it takes the first, transformative rush of the drug to enter your body.
But the images that promised everything delivered nothing. Or that is, they delivered the usual package of misery that I should have expected, from my own past experiences and the many, many stories of woe I have heard from other addicts.
Those images — the real ones I witnessed during my relapse rather than the counterfeit promises with which my disease had baited me — haunt me now. I don’t want to conjure them, the lesson has been received, but they roll on. Images of desperation, of blood and jeopardy and strangers with my fate in their hands.
The street crack dealer, with whom I am pleading to please return the keys he has taken from my pocket, who tells me he is going to “rent” my car for errands, who threatens me through a manic grin and all the while I am trying to convince him to please, please just give back the
You don’t need to hear this. This is mine to endure and overcome. Let me start again.
There are many motels sprinkled along the exits in Orlando, and I scouted out several before choosing one that allowed me to park directly in front of my room. With the car piled high with my belongings, I had to be sure no one would steal it. Despite the exhaustion of the previous week I slept fitfully, waking to peer out the window and survey any disturbance, fearful that my despair could multiply. The rolling stone of misfortune can gather plenty.
This long drive was unplanned, of course, the consequence of my relapse, when after days of not being where I was supposed to be and phone calls piled high with deceit, my former partner pegged my insanity and sent me a text from his business trip, asking me to leave before he returned. My disregard for our home, the dogs, and my personal safety was simply too much. A mutual friend arrived to care for the house. I would pack and leave within a day, to sit out the holidays with family in Shreveport, Louisiana, a thousand miles from Ft Lauderdale.
Even before his discovery, the awful realization of what I had done, how I had taken our gracious final days together and twisted them into something horrific, had actually spurred my relapse further, as I sought escape from my own wreckage. By the time his text appeared on my phone, the smoke was clearing, the fever had broken, but it was far too late.
The comfortable highways of Florida eventually gave way to the ruined roads of Alabama and Mississippi, badly spackled with tar, and my car rumbled with the thumpa-THUMPA-thumpa of their scarred surfaces. I wondered if the framed pictures in the trunk might break, if the towels I had wrapped them in might not be enough to
The towels. The guest room towels. They didn‘t really belong to me. It set off another round of worry, and I wondered if a new label might be added to my sadly recycled identity.
Drug addict. Liar. Thief.
I had turned back once already, when I had first driven onto the freeway before realizing I had his watch on my wrist, a watch I had always worn but wasn’t mine. I drove back to return it, and in the hour or so I had been gone, the quiet house had abandoned any welcome for me. I placed the watch on a table and locked up again. It felt like trespassing.
In Mobile, Alabama, I stopped again for the night and this time managed a full twelve hours of dreamless sleep. In the morning at the Waffle House, I ordered steak, eggs and hash browns, smothered and covered, and dismissed thoughts of what my trainer might think about my diet on the road.
Explaining my relapse is beyond me, beyond logic, and yet here I sit, trying to understand and explain. It maddens me, the choices I have made, and reminds me that the disease most capable of killing me isn’t HIV, it is drug addiction.
But this chronicle reeks of defeat, and I am not feeling defeated today. Let me start again.
The miles upon miles of endless highway give way to Louisiana, and Shreveport finally appears on a freeway sign. I relax into the anticipated embrace of family.
My tired car pulls into Mom’s driveway, and my brother — also gay and also an addict in recovery for more than a decade — greets me with an extended hug, and we begin the business of unloading the car immediately, as if to shoo away the evidence of my drive and the depressing reason for it. A guest room has been prepared, a closet cleared. For the next month, as I deal honestly with my tender wounds, this will be home.
Mother arrives from the hair salon, and her cheerful And how is my favorite redhead doing..? tells me that everything is going to be fine. She knows why I’ve come home, and she doesn’t require a single detail.
I’ve already begun the business of rededicating myself to my program of recovery, and there is pride in that. There is joy, in fact, once the truth has been told and the work to rebuild can begin. Not regretting the past, even the recent past, is a difficult job, but too much time spent looking in the rear view mirror hardly bolsters me for the road ahead.
I am grateful, to have regained my footing after a few terrible days, to have survived it, to have my freedom to make better choices. And I am filled with gratitude for the friends and family who have given me a precious gift.
They let me start again.
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(My best wishes and deepest gratitude go out to you, my friends. Thank you for your encouragement and your many kind comments. If you know someone who might benefit from this posting, who might think there isn’t a solution, then please share it. Love, Mark)
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PLUS…
I always have strange emotions about World AIDS Day, the annual commemoration on December 1st. It makes me feel a little like a professional drag queen having to contend with Halloween. Such a torrent of voices and contributors on “my” turf! But of course, that may be the point: to be re-energized and inspired by the many voices and news stories of others who might not be speaking up otherwise, and for me to realize that HIV isn’t mine alone, not by a long shot. The challenges it presents affects all of us, and calls out for the best in science, the best in our sense of community, the best of humanity itself. You’ll surely find many things online that resonate with you this World AIDS Day, so let me show you something you might miss. Love Light Romania provides support to people with HIV/AIDS in one of the toughest places on earth, but they have somehow found something beautiful in the tragic story of Alex, one of their clients who shares his life in a four minutes video filled with gorgeous photography of his journey. The simplicity of this video and his matter-of-fact telling of his story captures a beautiful sadness, and I hope you’ll take a look.
Tags: family, gratitude, help others, meth, recovery
Posted in Books and Writings, Family and Friends, Meth and Recovery, My Fabulous Disease | 56 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 | 13 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 »
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 | 9 Comments »
Facebook Put My Life Together Again
Tuesday, August 9th, 2011
Today I accepted the Facebook friend request of someone I knew in high school. We haven’t spoken in more than thirty years. She is married with a load of kids, and God knows why she wants to befriend the scandalous queer who wore knee-high platform boots to the junior dance in our home town of Bossier City, Louisiana.
I did what I always do. I accepted her request and included a link to My Fabulous Disease, labeled as a blog chronicling my life “as an HIV positive gay man in recovery from drug addiction.†Based on past experience, I’m unlikely to hear from her again, and that’s okay.
For most of my life, I’ve kept my social circles far away from one another. The family section never mixed with the gay contingent. These segments were then dissected into those who knew my HIV status and those who did not, which were then divided by whether or not they knew I did comedy drag, and then finally separated into those who knew I did (a lot of) drugs, and those who did not.
When I finally put a stop to my exhausting existence of lies and fakery that accompanied my drug addiction, I knew that in order to live a life of integrity I would need to be the same Mark for every person in my life. No more masks or crafting my personality to suit the audience.
Then I joined Facebook, which allowed me to invite all of these segments into one pool of friendship. My nephew would see my posting about my HIV treatments. My AIDS work colleagues would be treated to videos of me in drag. My friends in recovery would post encouraging words about our shared disease of addiction, and all of this would happily exist on my profile page alongside my nephew’s picture of his baby boy.
Facebook has allowed me to tell the truth again. It has shown me how to be authentic and the same person to everyone in the various corners of my life. Becoming a whole person again cannot be understated. After many years of deceit and hiding out from one group or another, Facebook presented an exercise in transparency that has saved me from the counterfeit personas I relied upon for most of my adult life.
With all the excitement and hype about Google+, I know it’s a format I will never embrace, because it promotes a feature that allows you to separate the people in your life into “circles.” They trumpet this as a real innovation, but it would be a huge step back in my personal development.
I need all the positive structure I can get. Overcoming my addictive nature is still a work in progress, and sometimes my insecurities can still find their way into my Facebook life.
I scan every posted update from hundreds of friends, “liking” with consistent generosity. Anyone who wants to be my friend makes the cut, except for the Eastern bloc hoochie mammas that sometimes come calling. Do they knock on your Facebook door, too? They show far too much boob in their photo and love older men and “hanging out.â€
Men on Facebook who show too much boob, well, they mostly get a pass. But beware of those who are always shirtless, and their friends are always shirtless, and so on. We’re not talking “at the beach†pictures, but holding-the-iPhone-aloft-in-front-of-the-bathroom-mirror type pictures. If you can’t ask a friend to take a shirtless picture of you, I figure you must be up to no good.
My OCD still sneaks out, and it adores Facebook. Someone might post a picture and I look at it and then I start browsing their other pictures and one of them has some interesting guy I don’t know and so I click on his profile and check out his pictures and stare at his many friends whom I do not know and carefully scan their photo album of a very nice dinner at a restaurant I have never heard of in a city I’ve never visited, and then notice some fabulous pictures of a birthday party for an adorable complete stranger and decide to look at the pictures of each and every birthday party guest and then I look up and it’s one o’clock in the fucking morning.
These behaviors are sometimes slow to change. I’m working on it. In the meantime, you can always friend me. What you see is exactly who I am.
“Dirty Facebook Logo” design by Hawk Style Design.
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PLUS…
A little sanity may finally be entering the arena of laws and prosecution of people living with HIV for not disclosing their HIV status to partners (even though, in many cases in which people are in jail, there was no transmission and protection was often used). A blog posting at Housing Works reports that Rep. Barbara Lee (D-CA) is introducing a bill that would require a review of all federal and state laws and policies regarding criminalizing people with HIV. This maddening issue was the topic of my conversation with Sean Strub last year, and it’s about damn time that legislative action (of the sensible variety) is being taken. “Thirty-four states and two U.S. territories have statutes that penalize HIV exposure” says the Housing Works piece. “While their supporters claim these policies protect the public health, evidence shows they do more harm than good.”
Tags: Aging, aids, culture, family, gay, help others, recovery
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 15 Comments »
Outliving My Father
Tuesday, July 26th, 2011
The descriptions of his decline, in whispered calls from back home, had a dreadfully familiar feel to them. Weight loss at a frightful pace. Losing interest in the world. Suddenly looking very old indeed. Most gay men of a certain age have heard those words, have seen the patient, have buried the friend. This case was different, though. It wasn’t AIDS, it was cancer.
And the patient was Dad.
The disease had swept rapidly through my father since his initial diagnosis. The inevitable was approaching, but the territory was completely unfamiliar to my family, who hadn’t seen a death in more than 30 years. They were about to get a tour through hell. I have traveled it many times.
“Well, he’s lost a lot of weight,†Mom said on the phone, “and sometimes, he will say the same thing more than once. That does scare me a bit.†You think you’re scared now, I thought.
“Have you checked into hospice care?†I asked. It’s exhausting for a man in his thirties to care for a dying lover. Mom was 75.
“Well no, honey, I thought we could wait on that…†Her voice drifted.
Something inside me went on AIDS auto pilot.
“Call the doctor and ask about hospice care,†I practically ordered. “They can help avoid another hospital stay, Mom.†The family would do anything to prevent that scene again.
I flew home within days. Still no hospice care. My family was stunned into inaction, it seemed. Had anyone spoken to dad about getting nursing help, about his illness, about how everyone was dazed into speechlessness? Heads shook slowly, eyes looked downward.
After 15 years living with my own HIV infection, my medical choices — powers of attorney, “no resuscitation†instructions — had long been settled. Mom was uncomfortable with the decisions, much less the reality.
On my second day home, I found myself alone with Dad. He was bundled on the sofa, and whatever his thoughts, they seldom found words. His condition looked hauntingly familiar, leading me to a nonsensical conclusion. “Dad has AIDS,†my mind insisted.
“Can I talk to you about what’s going on?†I asked him.
“Yeah..?†he said weakly.
“This is really horrible Dad, and everyone is freaked out and doesn’t know how to act.†His eyes never left me. “Mom is afraid to ask for help. You need a nurse. Do you think that’s okay?â€
“Well… yes. I do.†He meant it. “Your mother… your mother works very hard.†I took his hand. “This is hard for your mother, I think…†he continued. “Your mother and I, we are one mind, together. One mind.â€
I had never heard anything so romantic from my father. He saw it in my face, and he found the sadness, too.
“Don’t worry,†he said, and his hand tightened around mine. “It’s okay. I’m all right. This is all right…â€
I wanted to say everything at once. Every declaration of love I had for my father, the retired Colonel who loved his family fiercely, laughed heartily, and equated only happiness with success.
“I will talk about you my whole life,†I said. “All the stories, all the things you’ve done for us… but how do I explain you to anyone?†My voice choked, and my attempt to properly organize my father’s last days was awash in unexpected tears.
I looked up and was stunned to see damp eyes staring back at my own. A tear escaped and rolled tentatively down and across his cheek, as if unsure of the path, so alien was the terrain.
We began words and abandoned them, floating silently in a moment I hoped could delay the inevitable. I thanked God for a gift that, in the distorted world of AIDS, I had wanted so badly over the years. I would outlive my father.
Only after having collected the courage before to say goodbye, to realize the fear and talk about it anyway, did I have the strength to address it with my dad.
This is not a story about AIDS. But it is a story because of it.
(This was originally published in The Advocate on May 22, 2001, but has never been posted to my blog. Thanks for letting me share it with you now.)
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PLUS…
In 2000, when Jo Jowett found five children dying of AIDS in a bare room in Romania, she knew she had found her life’s mission. She established Love Light Romania, providing services and end-of-life care to people living with AIDS throughout the area, and if this sounds like dire work, wait until you see the stark beauty of the brief videos created to highlight their services. Told through gorgeous photography and voice over, the first video is Jo with one young man in his last days, as she expresses her devotion to him and explains how the program began. My other favorite is of Marius, a Romanian man very much alive today as a result of loving care (he’s even friended me on Facebook!). The images of his life in Romania as a man with HIV are beautiful and unforgettable.
Do you ever wonder what exactly all that blood is for, when the draw it for your lab work? The dizzying assortment of tests and numbers give me a headache. Lucky for us, D. Gregory Smith has sorted it all out for us in a terrific piece on the Bilerico Project about all the most common labs tests for HIV patients (and trust me, it’s an exhaustive list). It’s a simple primer, printable and ready to take along to your next appointment, and staying informed like this has all sorts of benefits, according to Gregory: “…a proactive stance by a patient is more likely to decrease feelings of depression, helplessness and fear, and increase feelings of strength, health and well-being.” Check out his excellent guide.
For those of you keeping score of the Pre-Exposure Prophylaxis (PrEP) debate (whether or not we should embrace the notion of people taking meds prior to risk behavior, as a prevention tool) the latest points go to the pro-PrEP camp. Last week, Regan Hofmann’s searing blog post on Poz.com dismissed PrEP as an overly expensive pipe dream. But this week, Project Inform’s Director of Research Advocacy, David Evans (right), made his inaugural post on Poz.com by countering that, although he agrees with much of Hofmann’s thinking, there may be ways to make PrEP affordable and widely available, and these avenues are worth exploring. Among his many compelling arguments for PrEP, David took offense at Hofmann referring to PrEP as “a profit-driven sex toy for rick Westerners.” He responds, “Whether intended or not, this statement implies that some people in whom PrEP might actually be appropriate (can she possibly mean gay white party boys?) are somehow less deserving of this tool than others.”
Tags: family, gratitude, help others
Posted in Books and Writings, Family and Friends, My Fabulous Disease, Prevention and Policy | 12 Comments »
The Entire 2011 ADAP Conference in Nine Minutes!
Tuesday, July 19th, 2011
The 2011 ADAP Advocacy Association (aaa+) conference held July 5-7 in Washington, DC, was bursting with spirit. Dozens of advocates from across the country met for three days of workshops and speakers, and in this video blog, you’ll see the entire conference boiled down to only nine minutes. I’m the cliff notes of HIV/AIDS events!
From people like Robert Breining of POZIAM from Philly to Lepena Powell Reed from Tampa, there was no shortage of passionate voices. But there were more than a few things on the conference agenda that really surprised and educated me — and provided resources I never knew existed.
Take the Patient Advocate Foundation, for instance, my great discovery of the conference. Did you know there is a non-profit foundation that focuses on resolving disputes between you and your insurance company or medical provider? Whether they are refusing to pay for a medication, or questioning a procedure, this Foundation will fight for you. They have garnered such a reputation that many companies just fold when they see the Foundation coming.
There may be politics involved here about which I am unaware, but where were our large national organizations? Frankly, I was disappointed to see a conference devoted to arguably the most pressing HIV issue of the day, held right in the DC home of most national agencies, and yet major organizations like the National Minority AIDS Council (NMAC) were not represented. As one speaker shouted from the podium, “WHERE YOU AT?â€
(To NMAC’s credit, they recently launched their own web site devoted to the ADAP crisis, with much of the same information available through aaa+. The more the merrier, of course, but I sure wish large organizations would pool their efforts and support one another.)
As usual at these type events, the real value is in the company of like-minded folks trying to do the right thing, and some of our greatest champions were there, like Butch McKay of the Positive Living Conference (one of the last conferences serving those living with HIV, and the best of them all), Dab Garner of Dab the AIDS Bear Project, and Bill Arnold of the Community Access National Network (CANN).
We shared meals and gossiped about news in the HIV/AIDS arena, and ventured out in DC for a dinner here and there. Some of us ventured even later, and further, but young activists these days, whatcha gonna do? I wish I had the stamina of advocates like blogger Christopher Myron, or World AIDS Institute founder David Purdy!
But back to some great resources for you. Have you heard of the Pre-Existing Insurance Plan (PCIP)? It provides health insurance to those who have been uninsured for six months or have been denied coverage. It’s a governmental program designed to help get people insured while we’re waiting for the new health plan to kick in, which happens in 2014. If it sounds like you qualify, I urge you to contact them at 866-717-5826. The premiums are based on what a healthy person would pay in the same market.
Attending conferences like this one is a privilege and a responsibility. The AIDS Drug Assistance Program waiting list continues to grow on a daily basis, denying patients the very medications that can keep them alive. This national disgrace deserves our attention and our phone calls to our elected officials, urging them not to forget the most vulnerable among us, even in times of fiscal crisis. Today is a great day to pick up the phone and contact your U.S. representatives, and tell them that you want them to support (or keep supporting) funding for ADAP.
In the meantime, my friends, please be well.
Mark
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PLUS…
It appears that poz queens like me have got nothing on Michelle Anderson. The Texas beauty was recently crowned the 2011 Ms. Plus America (which celebrates “the essence of the full-figured woman”), and Michelle’s platform is the impact of HIV among women, especially women of color. But there’s more. Michelle is also the first openly HIV positive woman to win a national beauty pageant title! She knew all along that entering the pageant could mean becoming a high-profile HIV positive role model. “I entered the pageant to create a voice for women, while raising awareness, educating and empowering women,” Michelle says. “I wanted to show that in spite of my diagnosis, I can still live a happy and prosperous life!” (Photo credit: Brett Vander Photography)
Artist Emilio Aponte is influenced, as he says, “by everything I see, feel and experience…” Considering Emilio is an HIV risk reduction coordinator at the Pride Center in Ft Lauderdale, it’s no wonder that his current exhibit there, “Ribbon HIV,” focuses on HIV prevention and education (at right, a detail shot from his piece, “Mutants”). And what a stunning collection it is — high contrast black and white “manipulated photos” that all have a touch of red somewhere, reminding us the virus is still present in everyone’s lives. Beyond the images themselves, Emilio accompanies them with brief, positive statements about protecting oneself from HIV risk, or taking care of yourself if you are living with HIV. It’s a beautiful collection with a terrific message. The exhibition is open to the public at the Pride Center, Main hall from July 5 to August 7, 2011 from 11:00 am to 9:00 pm.
Two exciting new clinical trials have shown the efficacy of “pre-exposure prophylaxis” therapy (taking a drug to reduce your risk of infection before engaging in risky activity). This seemingly bolsters the strategy of using meds for HIV negative people who are at risk of becoming infected, as well as the “treatment as prevention” strategy of having those with HIV on drug treatment. Not so fast, says Poz.com editor Regan Hofmann in her latest blog posting, “Not Drinking the PrEP Kool-AIDS.” Regan isn’t sure the study data is strong enough, and the daunting task of delivering meds to every negative person who might need it is a tall order. She doesn’t mince her words: “PrEP is a profit-driven sex toy for rich Westerners, disguised as a harm-reduction and prevention tool for disenfranchised people at risk for HIV.”
Tags: aids, help others, physical, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 12 Comments »