Martina Clark – WriterHIV Archives - Martina Clark

Little Green Monkey: Long-Term Survival with HIV

Posted on June 5, 2017 by Martina Clark

For many years, a few of my friends and former colleagues referred to me as their “little green monkey.” Apparently African green monkeys, (genus chlorocebus) can be infected with SIV or Simian Immunodeficiency Virus (the version of HIV that exists among non-human primates) but never progress to disease. In humans, most people infected with HIV who do not go on treatment will progress to AIDS within about 7-10 years. I was an anomaly.

From Flickr Commons: Green Monkey – Image from page 484 of “A general history of quadrupeds : the figures engraved on wood” (1800)

In 1992, I was told I had HIV and probably five years to live. Those five years came and went and little in my health changed. Then ten years and, still, nothing. Then fifteen years. Still healthy. I was the human version of a little green monkey. I had HIV but my body seemed to be handling it without medical intervention or treatment and the virus stayed in check and, luckily, I never progressed to having AIDS.

Towards the end of my sixteenth year with HIV, nearly into the 17th, my body began to wear down. I was working too much, traveling for my job 120+ days a year and not taking very good care of myself. Stress took hold and the virus took advantage. I became severely anaemic, began losing weight (unintentionally) and generally fell apart. By December of 2008 I had to start treatment; it was like being diagnosed all over again.

Indeed, I had always thought of myself as a long-term non-progressor because it seemed the virus lived inside of me but was doing little damage. Yet within a period of less than a year, I came perilously close to the point of no return. With the good fortune of having excellent insurance and living in a place with ample options for HIV care, I was able to start treatment…and it worked.

Within a few months, I was back to work again full-time and trying to figure out my life within these new parameters of now being not a little green monkey, but a long-term survivor.

Today, June 5th, is “HIV Long-Term Survivor Awareness Day.” Honestly, I did not even know that was a thing, but apparently it is. And, only now, 25 years in, am I embracing that the term applies to me. For some reason, I have a perception that because I enjoyed such good health those first decades that I don’t get to be among those who claim pride in still being alive. And yet I should.

My experience of living with HIV has, most certainly, been easier than most. I was healthy for a very long time and treatment works for me. But more pertinent is the fact that as a white blue-eyed blonde heterosexual woman living in the USA with access to health insurance; I am privileged and on many more levels than just as a woman with HIV. I have an amazing support system around me and know I’ll be okay if I need them to step up and care for me. I sincerely hope that day will never come, but I sleep better knowing I have options.

So I don’t have AIDS – I never did and never will. But I do have HIV and barring an eventual cure, that will never change. And for these 25 years I have also lived with the stigma and shame that surrounds this epidemic. Again, I’ve lived these things in the mildest of forms, but they are there. But against the odds, I am alive and thriving.

As I sit here writing this, part of me wants to hit delete and get on with my life, enjoying my good fortune of surviving for so long with this deadly virus. It would be so much easier to stop speaking out and just try to live a quiet “normal” life. And maybe I should, but I can’t. The day I stop speaking up is the day I fail my community.

Very few people living with HIV or AIDS are as fortunate as I have been. HIV-positive LGBTI deal with the double stigma – still – of having HIV and homophobia and/or transphobia. In the USA, women and men of color, but particularly women of color, are increasingly the face of HIV. They endure the double burden of having HIV and being brown in racist America.

HIV-positive individuals in countries with less vibrant infrastructures struggle to get and keep access to treatment. And, for the record, people in the USA also struggle to get and keep access to treatment. People living with HIV in unstable places – whether as a result of conflict, corruption or natural disaster – endure all of these challenges and more. The world is an unbalanced and unjust place. And I recognize how very privileged I am.

On this HIV Long-Term Survivor Awareness Day I feel blessed to be here and eternally grateful to all of the remarkable activists – HIV-positive or not – who came before me, stood beside me, and have come after to continue the fight to make the world a better place for everyone living with this virus and those impacted by our realities.

There is so much work still to be done. We need to be creative and continue finding new ways to tackle the epidemic but we cannot give up. We cannot become complacent. The world cannot pretend “HIV has been solved.” Government and the United Nations cannot draw down programs and pretend we can check that off our list. If we do not continue our efforts, more and more people will become newly infected with HIV. People will continue dying from AIDS if treatment is not accessible to all, particularly in war-torn and fragile countries. Those lives will be blood on our hands.

You are not alone. I am not alone. We must keep fighting. I could not have survived these 25 years without the work of others and none of us will survive the next 25 without the continued work to keep the world fit to inhabit. #Resist

Goodbye Alan Silverman, You Will Be Missed

Posted on April 17, 2017 by Martina Clark

On Saturday, April 15th, 2017, the world lost a good soul. Alan Silverman – a man I’d worked with during my years at UNICEF – died after having developed brain tumors only a year or so prior. His death feels very unfair and unkind and I feel immensely sad at his passing.

We had very different personalities and occasionally we clashed, sometimes quite spectacularly, and yet I’ve cried a lot today as I think of him. He loved life and was a role model for squeezing every ounce out of every experience.

In recent years, since retiring in 2010, he continued to work and traveled and fell in love and got married and all the while, I’m sure, planned more adventures and experiences. That’s how Alan was, always planning and, most importantly, putting things into motion.

I suppose I could look back and think that at least he’d gotten the most out of his life – far more than many could ever hope for – but I still wish he could have had more time. He touched a lot of hearts and minds around the world and educated so many about LGBTQI rights and HIV and stigma and discrimination and probably a gazillion other things.

Alan and I made up our respective parts of a small team of in-house United Nations activists who created a UN-system-wide workplace program on HIV: UN Cares. It was groundbreaking for the United Nations and would not have had the same success without him. He was a terrific facilitator and trainer and I learned a lot from him. Although I didn’t seem him often anymore, just knowing he was around somehow reassured me that the good guys were still at work in this battle against the virus we call HIV.

In an email from his husband, Antonio included a quote that sums up Alan in so many beautiful ways:

“I’ve learned that the passion of a single person can make a big difference, but with the passion of many people, we can make an even bigger difference.”

Alan made a difference.

I so appreciate how hard Alan worked to make the world a better place. He was a tireless warrior in the fight against AIDS and yet his life was cut short by something entirely different. We simply never know how or when our lives will end or what will be the cause. It never seems fair. I’m so very sad for Alan’s husband and family and friends.

He will be missed by so many, but we’re all lucky to have known him. He did the world good. May we all contribute even a fraction of Alan’s energy towards improving the lives of others. May we do so with him in mind.

Rest well, my friend, you so deserve it.

Writing Links: Two Recently Published Pieces

Posted on November 27, 2016 by Martina Clark

Writing, writing, writing. Yes, I’m still writing, really, I am. It has been a while since I’ve posted here, but rest assured, much has been going on.

I’ve recently gone back to work full-time at the United Nations and am again working on HIV. I’m currently working in the Department of Peacekeeping Operations so it is all new and interesting and consuming many brain cells.

We also have two new people living in our home; my partner’s daughter and her 21-month-old son. This brings more layers of complexity to day-to-day life, and also much joy. So much joy!

Oh, and, yeah, and we elected someone as our next president who frightens me so, yeah. There’s that and it is very depressing. But I’m not going to go there today.

Today I am sharing two links to recent pieces of writing that have been published online. (The first piece, Blue Marlin, is also available in print from the TSR website.)

The first link, for Blue Marlin, is the first chapter to my Master’s thesis (aka memoir) for my MFA in Creative Writing and Literature. With luck the rest will also be published, one day, but for now, here are the opening pages which have found a home at TSR: The Southampton Review, the literary magazine run by our MFA program at Stony Brook Southampton. If all goes well, I’ll be graduating with my MFA on the 22nd of December – watch this space for updates!

You can find Blue Marlin here: http://thesouthamptonreview.com/nonfiction/blue-marlin-by-martina-clark/ I’m honored to have been published amongst such remarkable writers.

The second link is for a piece in the Sunday Magazine section of Panorama: The Journal of Intelligent Travel. Panorama is a new journal focusing on literary travel writing. The journal is beautiful and the writers, photographers and illustrators are extraordinary. I am truly humbled to be among such talented people.

This particular piece, The Taste of Healing, in the Eaten section is possibly the hardest piece of writing I have ever attempted. I’m not even sure why, but writing this out nearly broke me and I was convinced it was the worst writing I’d ever done. But, perhaps, therein lies the very success of the piece; I tapped into something so raw that worked exactly because it was so rough around the edges. In any case, I hope you will enjoy it. Your can find The Taste of Healing here: http://www.panoramajournal.org/sm7-eaten/

I haven’t felt much like a writer lately but seeing these two pieces in print has helped. Maybe I’m still a writer after all.

Emancipainted: Nurturing My Inner Artist

Posted on July 4, 2016 by Martina Clark

Eighteen years ago, I left my first job at the UN. Although my job was working with civil society and networks external to the UN family, my real job – at least in my mind – was to be an in-house advocate; to keep our work honest. It was an important job that I felt proud to have, but also the furthest thing possible from being an artist. Look it up, the antonym for artist is bureaucrat.

My hiring also meant that I was the first openly HIV-positive person to be hired by UNAIDS in a full-time global position. I’d like to think that I was hired for my qualifications but there was also some strong symbolism in my being brought on board.

The day I went to a meeting and didn’t speak up, I knew it was time to leave and so after about 2 and half years of service, I did just that. It was the right thing for me, because I was burnt-out, but also for the organization because it left a door open for new people to come in and take up the work. Overall, leaving felt good. At the very least, it felt right.

That weekend in 1998 also happened to be 4th of July. In Switzerland, of course, the 4th of July doesn’t mean much but it meant a lot to me. Before leaving my job, I’d started doing some artwork and some friends with a nearby gallery invited me to do an artist exhibition – a mixture of painted work and metal sculptures.

We planned the opening for July 4th and I titled it “Emancipainted” and I used the occasion to celebrate the trifecta of my first gallery opening, the end of my first UN job and the beginning of my new life in which I hoped to focus on feeding my creative self, my inner artist.

During my first months away from the job, I read a book by Julia Cameron called “The Vein of Gold” and many of the exercises left me crying because I realized how much I’d smushed down my inner artist. My foray back into art was far overdue.

Flash forward to 2016 and it strikes me that many things are, yet again, aligning. A group of women with whom, last summer, I worked through “The Artist’s Way” – Julia Cameron’s most famous book – are now doing working through “The Vein of Gold.” Admittedly, I’d suggested it, but when I did, I hadn’t thought about the timing…only that it had had a strong effect on me the first time and I felt it might be good for them as well. Indeed, I will also work the book again because it is time.

My inner artist, which I began nurturing closely in 1998, is now 18 and, perhaps like a regular human, fully able to go out into the world. The timing again is remarkable as at the same time as working this book with these gorgeous women, I am also finishing up my thesis for my MFA in Creative Writing and Literature. I am a few months away from the title of Master of Fine Arts.

Now, to be clear, I did go back to the UN – to UNICEF – in 2003 and spent another nine years working but it was an entirely different scenario and I felt much more valued for my skills in that job. Somehow, within that work, I also brought in my creativity which helped to make it a much more satisfying experience. When I left in 2011, I felt immense pride for the work we had accomplished. I was tired then, too, but left with joy in my heart. I felt I had triumphed rather than leaving with a sense of defeat.

Again in 2011, I vowed to spend my time nurturing my creative side and I have. With the MFA and a few years of singing with bands here in New York, I now feel comfortable calling myself an artist and am confident that I have the goods to back that up.

As we recognize July 4th this year and the independence it represents for some people, I smile with the memories of how I have celebrated in the past. Yet again, it is time to embrace my (now more fully formed) inner artist and move forward in the world with higher expectations for myself.

Many people are no longer here to celebrate progress – I’m thinking particularly of people recently killed or injured in Orlando/Istanbul/Dhaka/Mogadishu/Baghdad/Riyadh/Medina/Too Many Places to List – and my thoughts of them and the insecurity of the world are a constant reminder that today is all we have for certain.

Let’s see where I am in a year. I hope it will be somewhere interesting; somewhere filled with beauty, inspiration and a community of artists.

#ImWithHer: Hillary Clinton

Posted on June 9, 2016 by Martina Clark

In December of 1995, I spoke at the first White House Conference on AIDS. It feels like a million years ago now, but it was a proud moment.

I was there to speak about women and HIV and international issues as I had been appointed as an NGO delegate to the board of directors of UNAIDS, where I would later become a staff member.

That morning, when we walked in through a side door of the Treasury Building, I remember hugging my friend Eric Sawyer as he and many others with ActUP boycotted the meeting, demanding that the President do more to address HIV and AIDS in the United States. Certainly after the catastrophic responses of previous presidents, these activists were expecting President Bill Clinton to finally get it right. It was perhaps too little, too late, but that conference was a start and would, eventually, lead to good things.

That hug, however, meant everything to me because I knew that the activists outside were also my friends and would be there for me when the day would end. We were all in this fight together, I was simply a spokeswoman for our community of people living with and impacted by HIV and AIDS.

I was nervous, humbled, overwhelmed, you name it; I had all the feels that day. In the morning, we’d had a meeting of experts and activists working on international issues around HIV and I took notes as everyone spoke and then, over lunch, (with my prized M&Ms in special White House packaging) I drafted my comments and tried to touch on everyone’s concerns and be as inclusive as possible.

When I met the President, I quickly remembered a movie I’d watched in my youth where a woman was sent to debunk a beauty pageant but then, when she won, she was overcome with emotions and embraced her crowning moment. My moment was similar, I was there to make clear some of the many (many) issues that needed to be addressed but when the President shook my hand, I felt myself blush. He seemed back-lit and I was momentarily awestruck. Okay, I was awestruck.

Our conference went on and I spoke and, I guess, did alright. People applauded and everything was good and it all felt like a blur. I’d just had one of the most extraordinary experiences of my then 31 years and I was in a complete haze of wow. It was the only time I ever was, or probably will be, be mentioned in The New York Times. It was a wild, weird, wonderful day.

A few hours later, there was a reception for everyone involved and I was told the President wouldn’t be able to join us, but the First Lady would. I was delighted because I thought she was remarkable in her own right. Patsy Fleming, then the AIDS Czar for the Clinton Administration, introduced me and I was impressed by Hillary Rodham Clinton’s kindness. When we spoke, she was entirely present and for a brief moment, I was drawn into her world.

Mostly, however, I was impressed by her brain. I referenced a panel she’d been on with a friend of mine in China some years prior and she immediately remembered my friend by name and asked how she was. Her brain was like a mechanical Rolodex (the paper version of a contact list before smartphones) and she seemed to be able to call up any piece of information with a minimum of prompting. And she was funny and I genuinely felt she was pleased to meet me.

On that day, I helped put a tiny chink in the ceiling of AIDS activism as I sat at that table with those most remarkable humans discussing the pandemic. Since then, I have continued to admire Hillary Rodham Clinton and while I acknowledge her flaws – we all have them – I still believe she is an extraordinary human being and I believe she will make an excellent President.

I felt so proud to have met her, albeit briefly and a long time ago, as I listened to her give her speech this week as she continued smashing that glass ceiling and became the presumptive nominee of the Democratic Party, the first woman to achieve that distinction.

And there you have it, my little story of how and when I met Hillary Rodham Clinton, the woman I hope will become our next President of The United States. #ImWithHer