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Posts Tagged ‘gratitude’

The Visual AIDS Web Gallery “Proud to be Positive”

Monday, June 1st, 2015

June is Pride Month in the LGBT community, and I was honored to be asked by Visual AIDS to curate a “web gallery” on the topic. Immediately, I considered a question that I had once posed to readers of my blog.

If living with HIV is nothing to be ashamed of, is it something to be proud of?

Proud to be Positive ImageIt was a really interesting exercise to explore this question, and I hope you will head over to Visual AIDS to check out the exhibit online. Visual AIDS has thousands of images of artwork that represent the artistic expression of hundreds of artists living with HIV.

Of course, including these artists in my exhibit meant that I was assigning meaning to their work in a way they may never have intended. That’s okay. Art is gloriously subjective. In the image Self-Enforced Disclosure (Greg Mitchell, 2007) above, I could help but believe that a man who would tattoo his HIV status on his body did not do it to shame himself. But is it an act of pride?

From my curator statement:

No one should be marked or shamed for living with HIV. But, should someone claim to be proud of being positive, there is a lingering, implicit threat to the statement, as if their pride is untrustworthy, or worse, that having the audacity to feel proud of living with the virus must mean they want to infect everyone else.

We must reject the stigma that labels people with HIV as predatory, irresponsible, and lacking in self-respect. Being proud of all that we are is hardly the same as wishing it on others.

I hope you will check this out and share your thoughts.

Mark

POZ Surviving Life Itself Imagep.s. My writing is my artistic expression, and I really appreciate the response I have received to my essay in the new June issue of POZ Magazine, “Surviving Life Itself.” The piece reflects on my relevance, and lack thereof, as a 30-year survivor of HIV, and what kind of impact others like myself can have in the here and now. I hope you will grab a copy at your local clinic or pharmacy, or read it online here.

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease | No Comments »

The Odds of Love

Monday, May 25th, 2015

This post will never be as romantic as I would like it to be. And it could never be as romantic as the truth.

MarkMichaelAIDS2012On the evening of July 22, 2012, Michael Mitchell went to a mixer at Cobalt, a gay club in Washington, DC. The international AIDS conference was being held in town and Michael, a DC resident who had once served as director of an AIDS agency, decided on a whim to go check it out.

I had been shooting video all day for my conference coverage for TheBody.com, and thought the name of the mixer — Meet the Men of AIDS2012! – had an inviting ring to it.

During the reception Michael and I engaged in some mutual cruising from across the bar before Michael, God bless him, made his move. He walked up and introduced himself. Even with dance music thumping and a boisterous crowd surrounding us, he had an adorable humility about him that came through loud and clear.

So did the remnants of a southern twang, and we quickly established we were both southerners born in Alabama. We talked about his work implementing the Affordable Care Act and I was struck by how proud he was to help provide health insurance to millions of Americans.

“I’m a blogger, I write about HIV,” I said after a while.

“Oh, I know,” Michael answered, and he grinned. “I’ve been reading you for years.” He leaned in closer and flexed his dimples. “And you should get new pictures. You’re much better looking in person.”

I swallowed the line like a cold glass of sweet tea.

For the remaining nights of the conference, I sat at the foot of Michael’s bed and edited video footage into the wee hours while he slept. We toured the Global Village at the conference center and got our picture taken (above). We held hands, casually and almost immediately. When I left a few days later there were tears at the bus stop.

You would think that after many years writing about living joyfully with HIV that my own happiness would be a given. That’s hardly been the case. After several false starts and some complete misfires — primarily due to my own deficiencies — I had stopped believing I would ever get the whole relationship thing right. What are the odds of getting another chance, after so many wasted ones?

“I am not a very good boyfriend,” I told Michael in a frank conversation early on, the kind that is meant to drive the poor guy away before he is taken hostage. “I’ve either been terribly immature or in active drug addiction. I’ve never been faithful, or even very thoughtful.”

“That doesn’t mean you can’t be,” he replied, as if it were the simplest response in the world, as if none of my past faults had any bearing on the here and now. Suddenly it clicked, a switch in my head I had been grappling with my whole adult life, and Michael’s statement made perfect sense. Why couldn’t I just behave differently, and do it because I love Michael and to hurt him would crush me?

I am going to marry that man.

On June 6, a small group of friends and family will gather in the lush woods of Pennsylvania a few feet away from where I proposed on Christmas Eve (below). During our ceremony I will make promises that I have every intention, at long, long last, of keeping. Our vows will be emotional but a mere formality, because for three years we have adored one another without a single cruel word between us.

Engagement Horizonatal crop

 

When I was growing up I could never find anything in the house; the right socks, my school assignment, my lunch money. I would call downstairs to mother and complain that I just couldn’t find it, whatever it was.

“You haven’t found it yet,” she would reply with the preternatural calm that had mercifully accompanied her through years of raising six children.

My search has continued, for those things misplaced or never claimed to begin with, and I have actually found a few of them. Feeling comfortable in my own skin. Self-esteem. Sobriety. An acceptance of life on its own terms. An unselfish love for another human being.

The search may have been maddening, but the guidance of a good mom usually holds true.

I just hadn’t found them yet.

Mark

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 5 Comments »

What It Feels Like for a Mom

Saturday, May 9th, 2015

“A boy’s best friend is his mother.”
— Norman Bates, Psycho

I was standing at the ticket counter of the movie theater and couldn’t believe my ears. They were telling me that Theater of Blood, with the great Vincent Price, was rated “R” and they were not letting me in without a parent. I was a horror-movie obsessed boy of 12, and was inconsolable. “I won’t look at any sexy stuff,” I remember pleading, “I just came for the gore!”

MomWith visions of decapitations fading like an old blood stain, I made the long walk back home and exposed my broken heart to Mother, who made one of the grandest gestures of my childhood: she took me back for the late show. On a school night.

It wouldn’t be the last time she had my back. Over the years she proved a trustworthy ally, and this was never more true than in the 1980’s, when gay men often lost their mothers — hell, their entire families – when an AIDS diagnosis was revealed.

Mom never abandoned me or my gay older brother, Dick (is there no gayer name than Dick King? Did my parents consult the Falcon Video Book of Baby Names?). I tested positive in 1985, and Mom immediately went to work educating herself on HIV.

My brother was spared HIV infection but suffered its cruelty nevertheless: his lover of 13 years, Emil, died of AIDS in the early, scorched-earth years of the epidemic.

In this video, I sat Mom down to find out things I’ve never asked before. What did she really feel when she found out I was positive? Did she believe I would die? Do mothers have a right to know? What advice would she offer other families? We also talk about the loss of Emil and the repercussions from it we still feel today.

Mom is no expert. She isn’t an AIDS researcher and she doesn’t march on Washington. She just loves her kids and tries to understand what is happening in their lives and how she can help. If your mother is like mine, we have a lot to celebrate (or remember) this Mother’s Day weekend.

Enjoy the video, and please, stay well.

Mark

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | No Comments »

The First Man Cured of HIV to Join the HIV Cruise Retreat

Monday, February 23rd, 2015

The annual HIV Cruise Retreat, commonly referred to as “The Poz Cruise,” will set sail this November 8-15 aboard the Ruby Princess, departing Los Angeles and cruising the Mexican Riviera cities of Mazatlan, Puerto Vallarta and Cabo San Lucas.

This year, though, there will be a somewhat ironic special guest on board: Timothy Ray Brown, the first man to be cured of HIV.

Timothy Crop 2“Timothy and his partner will be joining us, and we’re thrilled,” says cruise director Paul Stalbaum, a longtime HIV survivor and travel agent who began organizing the cruise over a decade ago. “He will participate in a presentation and Q&A on cure research and share his story with us. His personal grace and his public education efforts since becoming ‘the Berlin Patient’ are deeply admired. I know our passengers can’t wait to meet him and have some fun on the Mexican Riviera.”

Brown, co-founder of the Cure for AIDS Coalition and Cure Report, maintains that his identity hasn’t really changed since his cure in 2007, the result of a stem cell transplant for the leukemia he was battling at the time. (The transplant donor had the CCR5 gene mutation that blocks HIV from entering human cells.)

While the procedure hasn’t been successfully duplicated in other HIV patients precisely, it has led to advances in gene therapy treatments that incorporate what was learned from Brown’s case.

“Remember, I was HIV positive twice as long as I have been cured,” Brown says about joining the Poz Cruise. “I still consider myself part of the HIV community. I wouldn’t have it any other way.”

“There’s something special that happens when so many people living with HIV are together,” says Stalbaum of the hundreds of cruise articipants. “All the social walls that divide us just fall away. Our happy group of poz cruisers, who are often joined by their negative partners and family members, aren’t concerned with HIV status or age or appearance. It creates an environment where true friendships—and, yes, even some romance—are free to bloom. Our group watches their friend list on social media explode after every cruise.”

OLYMPUS DIGITAL CAMERAThe HIV Cruise Retreat brings together people living with HIV, their loved ones and allies for a week of exclusive theme parties, private excursions and educational events. While not a fully chartered ship like RSVP or Atlantis, the parties, events and even dinner arrangements for participants are exclusive.

Otherwise, says Stalbaum, “we mix with other people, just like in real life. And we’re holding hands and feeling proud. We usually commandeer one of the pools on the first day, and it’s quite a sight to watch the other passengers realize we are a colorful group indeed. A lot of the women on board ditch their husbands to hang out poolside with us instead. We’re a lot more fun.”

This will be the first time in seven years that the cruise has departed from the West Coast, and it’s expected to be a sold-out cruise. Special group cabin rates are available until Feb. 28. More information, including video blogs from past cruises, is available at HIVCruise.com or through Paul Stalbaum at (954) 566-3377.

This article was written by Mark S. King and originally appeared in Frontiers Magazine in Los Angeles. Timothy Ray Brown photo: Scott Taber. Cruise tubing photo: Brian Molenaar.

(Building community among those of us living with HIV is a passion of mine. I realize that although the cruise is reasonably priced it is also out of reach for some of my readers, and I hope you will understand my enthusiasm for supporting this event. This will be my 5th year to volunteer as MC of the cruise — I pay for my expenses like everyone else — and it has become a yearly vacation that I truly look forward to. I hope you will check it out! — Mark)

PLUS…

cloudlandIf you are gay, HIV+ and in recovery, have I got the perfect retreat for you. The POZitively Fabulous weekend retreat is now in its 3rd year and growing by leaps and bounds. Created by and for HIV+ gay men in recovery, it offers fellowship, workshops, speakers, and plenty of time to enjoy the gorgeous Cloudland Canyon State Park in Georgia. I’ve attended and it was terrific. Get all the details at SoberPlus.com.

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | No Comments »

About That GLAAD Media Award Nomination

Friday, January 23rd, 2015

 

For twenty-five years I have been writing about living openly as a gay man living with HIV. Along the way I have spilled secrets, opened up about sex and relationships, highlighted the work of those who inspire me, come clean about my history of addiction and recovery, focused my video camera on international conferences and the lives of HIV negative gay men, and have found myself in some hot water once or twice.

Crown Roses PicLiving out, loud and proud is an enormous privilege I don’t take lightly. There are countless people who don’t have supportive families or understanding workplaces or even friends to whom they can rely. And it is those people who are most often on my mind as I write this blog. Your comments and emails inspire and humble me, and that includes the criticism of my admittedly strong opinions. You make me think twice, very often after the fact, and you can be assured that you teach me.

So my nomination for Outstanding Blog as part of the national GLAAD Media Awards has me excited, flummoxed and feeling reflective. I wouldn’t be a good recovering addict if somewhere in my mind I didn’t feel unworthy. Like many of us living with a shame that never truly washes away, there is a part of me that feels like a fraud.

If you only knew me, it whispers, you wouldn’t accept me. You wouldn’t give me an award. Maybe you wouldn’t love me. It is the sad reverberation of growing up gay, of feeling socially damaged by HIV, of the guilt of having once turned to drugs to block my doubts and fears.

Today, I will not be bowed by misgivings and undeserved shame. I will even indulge my dangerous ego and admit that I’m terribly proud and feel like one of the Oscar nominees I track with religious verve. And that is the simple, elegant value of efforts like the GLAAD awards. They remind us that we’re okay, celebrated even, and it chips away at the internal homophobia we carry with us in quiet places.

The fact that the highly visible GLAAD Awards focus most notably on film and television depictions of LGBT people makes this situation all the more unreal. The glamour of it all appeals to every gay bone in my body.

Will there be a red carpet? Can I lose enough weight to walk it? Can I convince openly HIV positive fashion designer Mondo Guerra to lend me a jacket (I’m working on it)? Can I make a statement about how those of us living with HIV are crafting lives of joy and engagement and responsibility?

It might be more productive to shift the focus away from myself and share with you the other nominees in my category. They surely deserve that. GLAAD does us all a great service by bringing art and resources to our attention that may be unfamiliar to us. I’ve been stalking the other nominated blogs below and the inspiration to be found there has transformed a common platitude into a sincere fact: it is, without a doubt, an honor just to be nominated.

The Art of Transliness
The triumph of visible trans advocates like Laverne Cox makes headlines, but this blog provides insight on the ongoing, day-to-day challenges of the trans community.

AutoStraddle
My favorite blog name ever. This site devoted to queer women, or “girl-on-girl culture” as they describe it, is a hip blog mixing pop stories and stigma-bashing commentary.

Box Turtle Bulletin
Anti-gay rhetoric doesn’t stand a chance in the face of this site providing news, analysis, and fact-checking.

Holy Bullies and Headless Monsters
Lies in the name of God are still lies. This site analyzes and refutes the LGBT inaccuracies of religious conservative organizations.

Thank you, my friends. I have said that finding my voice through this blog has saved my life, and those words ring especially true today. And in case I don’t have the opportunity for an acceptance speech, allow me to thank the most important person now.

Michael, I love you. Being engaged to a man like you is the biggest reward of them all.

Mark

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 7 Comments »

The My Fabulous Disease Holiday Spectacular!

Friday, December 12th, 2014

(I can’t resist posting this each Holiday Season. The video below is my very favorite, of the more than 60 I have produced over the years. Enjoy!)

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.

King Family CarWhen 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.

SantaMarkSmallThe 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.

MOM’S CHRISTMAS TREE COOKIES

(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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Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 3 Comments »

Once, When We Were Heroes

Friday, November 28th, 2014

My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.

DickEmilEmil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.

It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,” over and over again, before the drink would close Emil’s eyes and quietly kill him.

Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.

Richard TodayThere were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.

There is a shy, friendly man at my gym. There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.

There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.

There was a time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.

There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.

hospital-wardMy best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But there was a time when he knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.

Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.

Watching them disintegrate felt like a preview of coming attractions. But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.

There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.

There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.

Binder5 - CopyJeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.

He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.

“I tell you what,” I offered, “I’m from the future, and I can tell you anything you would like to know.”

“OK then, what happens to my parents?” he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.

“They went to Hollywood and won big on a game show, so they never did need your support in their old age,” I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.

“When…” he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?” There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.

“It does end,” I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.” He digested each word like a revelation, and slowly relaxed into sleep.

There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.

Grab Mark InterviewThe truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague.

He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.

To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.

Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.

But once, there was a time when we were heroes.

(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, written to commemorate World AIDS Day. It has since become my annual post to commemorate the day. Here’s to a joyous and healthy holiday season for us all. — Mark)

—————————————————–

Two Great Ways to Participate in World AIDS Day!

Red Ribbon 2Our friends at TheBody.com have a fun social media campaign known as #RedRemindsMe, and it’s pretty easy. What does the red in the ribbon remind you of? Take a photo of something red, use the hashtag #RedRemindsMe, and post it on social media like Twitter, Facebook or Instagram — or post it directly to the World AIDS Day page on TheBody.com. You have until December 12, and the most interesting images will be awarded fabulous prizes!You can get all the details right here.

WeAreAllCleanThe cyber dynamo Jack Mackenroth is at it again. This time he is breaking the internet with his HIV stigma campaign, #WeAreALLClean, another photo-based social media effort. It addresses the ill-advised habit of people saying they are “clean” when they are HIV negative, which suggests that those living with HIV are somehow “dirty.” I wrote about this annoying phenomenon in my post from 2012, “The Stupid Question: Are You Clean?” Jack’s campaign is exploding with shots both sexy and demure, and even some funny ones like my own (above). Turn on the shower and get out the camera phone!

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 4 Comments »

The Disguised Blessings of HIV+ Poet Mary Bowman

Monday, November 10th, 2014

When Mary E. Bowman stepped to the stage five years ago at SpitDat, an open mic night in Washington, DC, she was 20 years old and terrified. She was about to perform “Dandelions,” her first poem to reveal a secret that her own family had long kept quiet: that Mary had lived with HIV since birth, the result of a mother addicted to drugs who died when Mary was only three.

MaryBowmanGrab“I had not memorized the poem yet,” Mary told me, “and the paper I held was shaking. It is usually kind of a loud environment, but when I started to read, the room went silent. That made it even more nerve-wracking.”

Mary was nervous about the audience response, about what they would say, and if any of them would even be her friend once her poem was done. She needn’t have worried.

“It was such a loving environment,” she said. “It was so accepting, like a family. When I was done, everyone applauded. I walked to my seat and a young lady was crying, and all she said to me was ‘thank you.’ I realized the poem wasn’t just about me. It was about other people, too.”

“Dandelions” explored her feelings about the mother Mary hardly knew, a loss that Mary has felt deeply her entire life. “I was eventually raised by my biological father,” Mary explained. “He wasn’t married to my mother. He would come to see me when I was a baby and find me on the sofa alone… and my mother out of the house.”

Mary’s father witnessed the scene “far too many times” and took the child home to his wife, who fell in love immediately and raised Mary as her own.

Mary’s talent lies not only in her poetic words, but the sheer passionate force of the emotions behind them. It’s impossible to watch her and not to be moved. She grabs you by the heart and doesn’t let go.

Today, Mary works in policy and advocacy at The Women’s Collective in Washington, DC, but only after spending her younger years without very much social support for her status. “My family was very quiet about HIV,” she said. “Even when I was at the hospital growing up, I didn’t have an outlet to talk about it.”

Things have changed. In addition to her advocacy work, Mary has performed at HIV conferences and for events such as AIDSWatch in Washington. Her work as a performance artist and poet is a unique niche among young advocates, but it is when working with other women that the loss of her own mother sweeps over her.

A lot of the women have drug addiction histories. They have had their children taken away. “They are my support system,” Mary says, “and it reminds me that my mother isn’t here. They tell me stories. I just wish someone had saved my Mom as well. She didn’t have the services available to her that they do now.”

Working with these women has been a melancholy gift to the young artist.

“I’ve been caught up in emotion several times, when performing for women,” she says, and their bond has become her only connection to a woman lost to time and sad circumstance. She pauses to consider the many faces of the women for whom she has recited “Dandelions.”

“They are my mother,” she adds.

Mark

Dandelions

A dandelion in the midst of rose bushes would stick out like a sore thumb to ignorant souls
But I know the road this dandelion endured
This weed that all gardeners want to destroy is more appreciated by God than any seemingly beautiful bush of roses
Though that misunderstood dandelion wont for long last
Let it be known that God gave it the role of the outcast for divine importance
My mother was a dandelion in the midst of roses
Ignorant of her purpose she uprooted her soul and unknowingly left herself for dead
It has been said that my mother when above the influence transmuted broken hearts into smiles
All the while dying on the inside
AIDS didn’t kill my mother
It put her at rest
Now this song bird whistles in the key of silence
And I the latter of five write poems documenting the struggle unknown to my family
The sickness she denied lies in my blood with a lesser value
People speak I don’t know how you can live with knowing nothing but owning the growing disease that your mother for so long fought
But see that’s the difference between a rose and a dandelion
Roses were created with thorns to warn hand approaching without caution
Dandelions were not given that option
But they were created by an all knowing God
And that all knowing God created dandelions with the strength to withstand ignorance and hatred
Dandelions live in this matrix of life understanding the price
Roses live like the world was handed
Dandelions take the world and won’t leave a rose stranded
But my mother died before she got the chance to realize that dandelions are blessings in disguise
She I dare say died before her time
That thought lingers in my mind conflicting my belief in the divine
My mama raised me in the faith that the day God sweeps you away is a day proclaimed way before the manifestation
But I can’t help but experience devastation knowing nothing about the woman who carried me toting guns in the defense of my father
It is even harder knowing nothing about her but knowing the reason the hospital has become my second home is because this dandelion
chose to roam with the buffalo
But I seek serenity in the fact that she just didn’t know
That she a dandelion was just as beautiful as a rose
And I will go forth knowing my purpose as a dandelion
This life is worth all the crying and all the dying I have to do just so someone in my shoes can live
I will gladly give myself as the sacrifice if it means that all the dandelions in the world become viewed as more than the consequence of sins behind closed doors
You can lay me on my back and present me life less to God if it means that dandelions with unseen scares will not be viewed as odd
But as gifts from God to show the world that beauty lies not in the pedals of flowers but in the power of unconditional love
And in the strength of the untouched, un-hugged, sometimes unloved but most important of all un-budged dandelions

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Finding a Pain of My Very Own

Monday, September 29th, 2014

I have twenty staples in my back holding an incision together. It hurts.

Just making that rather gruesome statement leaves me feeling conflicted. Yes, I want sympathy. Yes, this pain has been a constant companion for the last two months, from throwing out my back again to discovering from an MRI that a nerve was being crushed to a serious back surgery and then a slow recovery with more pain than I bargained for.

Mark Hospital BedBut the self-indulgence bothers me. How can we possibly complain, about anything really, in relation to the trials of others?

It reminds me of the 1980’s, when there were so many deaths from AIDS that we couldn’t grieve properly for individuals losses. The problem with living during that time, and seeing such mortality, was that everyone was doing it. There was no room in our aching hearts to feel for them all. And how in the world was I supposed to feel sorry for myself, the one with HIV who was healthy and alive?

Soliciting sympathy is a perilous enterprise. I’m That Funny Guy with HIV. Revealing that I’m hurting and feeling miserable feels like I’m going off-script, that these words don’t belong on this blog, that you’ll see me as self-centered and a whiner, that I’m hurting “my brand” and web traffic will suffer. But mostly, that my selfishness will become apparent, or at least show more than usual.

The self-pity comes and goes, like the muscle spasms, like the ocean of pain that ebbs and flows, like my own attitude toward what has happened to me, or what is yet to come. It’s a kaleidoscope of impatience and gratitude and hope and anger. So I don’t talk about it much or I make light of it and try to keep things in perspective.

During my hospital stays these last weeks, I witnessed true medical emergencies, and saw other patients awaiting care who clearly were more frail, and more afraid, than I was. Meanwhile, I was cracking jokes with the nurses as I was being prepped for surgery and looking forward to the bliss of sedation, as any red-blooded addict in recovery would. I liked the attention, the drama of something serious underway, and how, at least for a few hours, it was all about me.

But then the surgery happened. And it isn’t funny anymore. And I understand the legitimate use of oxycodone. And I can’t put on my own socks.

So, for long periods of time during each day, I don’t care about the suffering of others or the inhumanity of war or the latest HIV infection rates. Because what I am going through right now hurts. And it’s really hard.

And I want a pain of my very own.

It is that very realization, of wanting to hold tight to something shared by no one else, that shatters my selfishness. Because if there’s anything I believe in, it is that we heal and strengthen by sharing our common challenges. Whether it is living with HIV or a death in the family or a breakup, we get stronger when we talk about it.

I have a folder of special emails called my Rainy Day Folder, and in it are messages I have collected over the years. They are from people all over the world thanking me for a posting on my blog or sharing their own stories with me of stigma or fear or loneliness. And during this entire experience of mine, I have neglected to do the very thing for which that folder is intended: when I’m feeling low, read some of the emails and take heart that I’m making a difference by sharing my truth or offering advice.

So, this morning I opened the folder and began to read. And one piece of advice, something I offered repeatedly to others who were experiencing misfortune, stunned me with its precision and irony. “You are going to get through this,” I said, more than once. “And one day you are going to be able to say to someone, ‘I know what you’re going through. I understand. And this is how I got to the other side.'”

Seeing the intersection of hurt and healing in those emails released something in me. The really good cry that followed was about me, and them, and all of us.

And I felt no pain at all.

Mark

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Update: The staples have been removed, and the surgeon was practically gleeful during our appointment that I am walking nearly normally. He said that during surgery he was alarmed by the nerve damage and he feared for my mobility. So I dodged a bullet, thanks to taking fast action, getting good advice, and walking (or limping) through the experience. Thanks for all the kind messages of support. I’m on the mend.

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The Top Ten ‘Fabulous’ Posts of 2013

Monday, December 30th, 2013

The year 2013 was a game changer for My Fabulous Disease, and I want to thank you for your clicks, comments, and shares.  I have more confidence as an advocate and a writer, thanks to you, and traffic for this blog more than doubled over last year!

I’m bad at predicting which posts might resonate with readers. My philosophy has always been, “if you build it they will come,” and the rest is up to you. Apparently you have very eclectic tastes, my friends.

In ascending order, the Top Ten Postings of 2013 are…

Mondo Grab10. The Inspiring Advocates of the 2013 United States Conference on AIDS. This is a rollicking video recap of the annual event, produced by the National Minority AIDS Council, that brings together the very best our HIV/AIDS service community has to offer. Public health and pharma are there, of course, but I’m always thrilled to meet those who are doing the work on the ground, for local community-based organization working with scant budgets but tons of heart.  This video includes a discussion about the generational divide among people with HIV, interviews with multiple movers and shakers, marching bands, and Mardi Gras pageantry.

DickEmilKilaRESIZED9. An AIDS Death in the Family.  Drawing from my book, A Place Like This, I have revisited the night my brothers’ longtime partner died from AIDS, and the surreal haze that surrounded the occasion.  It is about loss, yes, but also about how we cling to social habits during the darkest of times to attempt to normalize things that feel anything but normal.  A dying man offering a “parting gift” to me, conversing as if he won’t be gone in a few days, and the dreadful phone calls that a grieving lover must undertake. Yes, it’s rough.  But it’s life… and death.

MichaelPride2013SignSMALL8. Two Minutes of Advice on Testing HIV Positive. This is a clever social media campaign: Healthline, an online health community, has asked people who have been living with HIV to create videos for those who have recently tested positive, known as “You’ve Got This.” Think of it as “It Gets Better” for those with HIV. Of course, I had to create a video in my own peculiar way — something that demonstrates the sense of humor that has served me well over the course of 30 years living with HIV. There are now quite a few videos in this campaign with a variety of messages, and I encourage you to visit the Healthline site; you might find the message you or someone you know really needs to hear.

butt7. Probing My Anal Phobia.  I cannot believe I told you these things, which might be one reason this essay is a personal favorite of mine. Maybe this is about facing your fears, because I hate talking about… anal things. So what did I write about? Anal sex, cleanliness, colonoscopies, and the most outrageous douching disaster I have ever experienced. Yes, that’s right, I went there. And the results will either have you laughing or finding out how to unsubscribe. Sometimes, I just need to write things that are on my mind and try to block out the fact that my Mom follows my blog. Enjoy!

Poodle16. The Increasingly Strange Case of Uncle Poodle. Long before the Duck Dynasty controversy blew up, another popular reality show had an off-camera moment that caused quite a stir. Uncle Poodle, the gay uncle from the reality show Here Comes Honey Boo Boo, came out in a printed interview as HIV positive, and further claimed that he had been infected by someone who did not disclose his status — and who went to jail as a result. The details, however, are murky, and say as much about shame and HIV stigma as they do about criminalization laws.

Mark and Bil5. HIV and Gay Media: The Vanishing Virus. I suppose I have a lot of nerve. After having the honor of being included in an invitation-only summit of LGBT media representatives, I spend much of my time at the event hounding them, on video, about why they don’t write about HIV more than they do. Fortunately, the participants were honest, thoughtful, and quite candid in their responses.  The event was co-sponsored by the National Lesbian and Gay Journalists Association and the video was featured on the main page of their site, so I suppose all is forgiven!

02262008 mugshot4. Surviving Two Epidemics: AIDS and Meth.  My history of crystal meth addiction and recovery isn’t something I am ashamed of, but I don’t write about it as much as I once did. The whole recovery process feels almost too precious to share. But when I was asked to share my story for an ongoing feature in Positive Frontiers about gay men in recovery, it just felt right. This essay is my truth, and maybe it will speak to someone at a time when they are ready to make a change. For information on crystal meth recovery, visit http://crystalmeth.org/.

Credit Anne Marie Fox Focus Features3. The Beautiful Sadness of Dallas Buyers Club. If anyone has a chance of stealing away an Oscar from Chiwetel Ejiofor of 12 Years a Slave this year, it is Matthew McConaughey, who is transcendent in this illuminating look at one straight man’s response to the lack of FDA approved HIV medications. Some have criticized the film for not showing the impact of gay activists, but that’s part of the point of the film: this is the story of this terribly damaged straight man, and how his prejudices were (somewhat) overcome through his own advocacy, as self serving as it may have been. You can count on one thing: Jared Leto, who played a transgendered friend, will be taking home an Oscar for Best Supporting Actor.

taregdy face grab 4 CROP BLOG SIZE2 (tie). Stop Bludgeoning Young Gay Men with Our AIDS Tragedy. I thought I could say these things that other folks — HIV negative or young gay men themselves — would be crucified for saying. I was wrong.  I got crucified, too. Fortunately for my sensitive ego (yes, angry comments still hurt my feelings), many others understood that our history is important and vital to preserve, but it’s not a prevention strategy for the landscape of today. This was more primal scream than writing for me.  Perhaps I should learn to count to ten?

Spencer Stairs crop2 (tie). The Private War That Killed Spencer Cox.  It’s kind of amazing to realize that Spencer, an early activist with ACT UP New York that went on to found Treatment Action Group, died only last December. So much has been written and done in his honor, including ongoing public forums on either coast that address PTSD among people with HIV/AIDS, and how we as a community can best address their (our) needs. This essay, posted soon after Spencer died, explores some of those issues, including trauma, loss, and addiction, all of which Spencer himself wrote about before his untimely death at the age of 44.

donna-reed11. Your Mother Liked It Bareback. I had the title before I wrote the piece, and that’s probably a terrible thing to admit, because the title alone incensed people (The Huffington Post, which carries my content regularly, refused to post it at all). Another primal scream put on paper, an outgrowth of complete frustration over our refusal to admit that there are other “protections” against HIV that do not include condoms. Despite applauding those who do use condoms more than once in the piece, I was accused of “promoting” barebacking and received my favorite name-calling moment of the year, as a “vile merchant of death.” Even when faced with the facts about undetectable viral loads, or PrEP, some who read this article fell back on 40-year-old worries: “you could get an STD!” Honey, if the worst we have to fear these days is the clap, then sign me up. That just makes me feel nostalgic.

POZ June 2013 Coverr blog sizeBut wait! The Real Winner of 2013: “The Sound of Stigma.” When POZ Magazine asked me to contribute a cover story on HIV stigma among gay men, I had no idea it would become my most widely read essay of the year, by far, without even appearing on my own site.  Even more surprising, to me, because the piece is such an indictment of how gay community turns against its own (“We are AIDS itself.”). The posting of the story on Poz.com has been shared 2,500 times and has more than 150 comments, ranging from emotional to angry to heartbreaking. I am proud and yes, humbled, that the article contributed to such an important conversation.

Have a bright, joyful, and healthy 2014, my friends.

Mark

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