World AIDS Day 2021: Still Here

World AIDS Day. Le Jour de St. SIDA. The second is a reference likely lost on everyone I know who is still alive except one dear friend who is having too much fun in the South of France as an actor to read my blog, but, alas, I digress, n’est ce pas. I’ll come back to that.

Each December 1st, we mark this day to remember those we’ve lost to HIV and AIDS. Personally, I quit counting the number of people I’ve known who died in this pandemic when that number hit 50. That was in 1993. My counting stopped, but the death did not.

On a lighter note, we also mark this day to embrace those still with us. The many who are living with HIV and AIDS. The many, like me, who are aging with HIV, a concept none of us could even imagine 20, 30, or 40 years ago. It is truly awesome to still be here.

Many of these memorials are incredibly powerful, moving, and are so very important to those who continue to grieve and support those of us who are still here. And, of course, to pay tribute to those who have kept us going — our allies, friends, families, loved ones, and care-givers. I’d attended one or two World AIDS Day events prior to my own diagnosis in the very late 1980s/early 1990s in San Francisco and found them entirely overwhelming.

And, my wimpy emotions aside, it must be said, that so many of these memorials are also absolutely stunning, visually. This year, in San Francisco, the AIDS Memorial Quilt has come home and will be on display in The City where it was conceived of by legendary activist, Cleve Jones, for a World AIDS Day REVIVAL at St. Johns the Evangilist.

Countless cities, towns, and communities around the world will mark this particular World AIDS Day with added significance as it corresponds with the 40th year since the first official diagnosis of what we now know as AIDS in the United States, and 25 years since the first viable treatment came on the market in 1996 which was, admittedly, a life-saving, or at least life-extending, game-changer.

For me, this marks the 29th or 30th’ish year that I’ve been living with HIV. Fun fact, the day one is diagnosed doesn’t necessarily correspond with the day one is infected. So, who knows. But I was diagnosed in 1992 and I’ll never know with 100% certainty when I was infected so I’m rolling with 30 years. Next year, I’ll probably still roll with 30 years, because, why not. And, really, after 30 years of anything, who even cares?

World AIDS Day was first observed in 1988 and was the first-ever global health day so this is the 33rd commemoration of the day. Dr. Google has a variety of articles on the history of the day, but one tidbit I will share which is that when UNAIDS was formally launched in 1996, they took over the campaign. I mention this because in 1996, (just four years after testing positive) I went to work for UNAIDS and in December of that same year, I was sent to speak on behalf of the organization on World AIDS Day at a special session of the General Assembly at the United Nations (UN) Secretariat in New York. This is a specific moment I remember fondly:

As I sat on stage in the cavernous hall that houses the General Assembly for their deliberations, I fingered my new earrings: Marvin the Martian encased in an antique-looking setting. They went with my Bugs Bunny watch. Unless they moved in for a close inspection of my ears, nobody but me would know I was wearing cartoon characters at a momentous gathering. [My Unexpected Life, p94]

I wanted to be there because I wanted to address the fact that the UN was not adequately caring for their own staff living with HIV. But I was also already disillusioned with the possibility of doing anything meaningful within the enormous beast that was–is–the UN. Wearing my cartoon character jewelry was my way of practicing self-care. I was preserving a piece of authentic myself in the midst of navigating the squishy underbelly of the United Nations.

That was the first and last time UNAIDS had me speak at such a public event despite the fact that I was, for quite a long time, their first and only staff member openly living with HIV.

Two of my absolute favorite memories of World AIDS Day are as follows:

One year prior, for World AIDS Day in 1995, I was heading into a government building at the Capitol in Washington D.C. for the First White House Conference on AIDS. There, at the entrance…

Just before entering, I reached up and gave a hug and kisses on the cheeks to my dear, very tall, friend, Eric Sawyer. … As I headed inside to advocate, Eric stood outside with a bullhorn, surrounded by a hundred and fifty others from ACT-UP, as they protested the government’s lack of work on the issue. Both inside and outside this historic meeting, we each had our role. [My Unexpected Life, p64]

I loved that encounter, and over the years, continue to love our encounters because both roles continue to matter. The indoor voice advocates, and the outdoor voice activists. Quiet and loud. We all have to keep fighting for our rights and we’re not done yet.

The third World AIDS Day moment is truly a gem, but I’ll only hint at it though because if you haven’t yet read my book and still might, I’d hate to ruin it. But let’s just say, that even I could never have imagined this particular little plot twist. You’ll know it when you read it, along with the unkempt lapdogs. Truth truly is stranger than fiction.

With that, let us return to Le Jour de St. SIDA. This is, by all accounts, an awful, horrible, terrible way to refer to World AIDS Day. It is irreverent and disrespectful. It flies in the face of everything religious and smacks at the kindness of allies and caregivers and diminishes the day to its most ghoulish of forms. It translates to St. AIDS Day.

In 1994, just before World AIDS Day, I was at a Medical School in Paris with a group of other activists in meetings preparing for the Paris AIDS Summit and a few of us decided that one of many gaunt statues — a particularly gruesome one covered in cobwebs lurking in a dark corner — was actually St. SIDA himself. Saint AIDS, in honor of the day, and that became our little inside joke. The epitome of gallows humor.

We had a lot of little inside jokes and we needed them because life wasn’t very funny.

During the day we drafted language for governments that would ensure a seat at decision-making tables for us so we could take part in determining our futures. We were fighting for our lives in every way we knew how. In those cold winter evenings, we marched in the streets of Paris wearing Paris is Burning t-shirts over our jackets and yelling Silence = Death or other chants common to our cause.

I felt exhilarated, yet we marched because everyone was dying. Who was next?

And still, for me, that terrible little inside joke resonates even today. I absolutely hate World AIDS Day. It reminds me of all of the things that make me angry. It’s a day that fills me with rage. Attending events sends me back to the angst I had as a child when I had to go to confession and sit in that dark room and talk to the disembodied voice behind the screen and make up sins I hadn’t committed because I was, well, a child. I felt betrayed and punished for just existing.

Now, I want to punch things and scream and yell at the universe. As a friend posted yesterday evening on social media, for us, World AIDS Day is every single day. Wash, rinse, and repeat. Every year I feel the same way. Much as I try, I cannot get on board with the kumbaya, cry me a river, I miss everyone sentiment of the day. For, I too, most certainly, am an awful, horrible, terrible person.

I do miss people. Don’t get me wrong. I miss so goddamn many people I don’t even know where to start. And kumbaya only has one line, as far as I know, so until someone works on some more lyrics, I’m not havin’ it. I would love to cry. Really, not even just rivers, oceans. I haven’t cried in years and I’m not even kidding. And that’s not normal. I am probably officially broken but at 57, I’m pretty sure it’s way too late to return me. But along with my many other defects, I do not like World AIDS Day. Never have. Doubt I ever will.

All that said, this year, since I wrote, and was lucky enough to have my memoir published, (thank you, Northampton House Press) I felt I needed to do something.

[Cue shameless plug] Of course, if you want to do something, you can buy the book, My Unexpected Life: An International Memoir of Two Pandemics, HIV and COVID-19 and support a awful, horrible, terrible woman aging with HIV! And then, please review it on Goodreads or the other place. Now, where was I?

So I recorded an amaaaaaazing podcast with Ben Plumley which you MUST listen to, as well as all of his other interviews — also brilliant — and I wrote this blog post. And beyond that, I’m going to hide from the day as best I can. No confession for me today.

Although, maybe, just maybe, I’ll light a candle to St. SIDA and pray that he quits killing off my friends. I’ve really had enough. And don’t even @ me with this new plague. Nopity nope nope.

But, whenever St. SIDA does come for me, with his cheezy red ribbon wrapped scythe (even the reapers knows you gotta have a gimmick), I know that I’ll find a lot of excellent souls whom I’ve missed so very very much and we’ll sing, and we’ll dance, side-by-side [insert tap riff] by side, and I’ll be in excellent company.

But I sincerely hope I’ll have many — many — more World AIDS Days to dislike — or like — before that happens and that you will, too.

May this World AIDS Day 2021 day be healing for your soul in whatever way you need it to be. You are not alone.

The images featured are from the “Stigma Fuels HIV” campaign launched on June 8th, 2011 by the UN Cares (UN System-Wide Workplace Programme on HIV) team to combat HIV-related stigma within the UN workplace. We had messaging, and stickers, and posters, and a robust social media campaign reaching scores of countries around the world. It was rather spectacular and I was fortunate to take part. On that day, a group of UN personnel living with HIV — UN Plus — met with then-Secretay General, Ban Ki-moon, and at the end of our meeting I offered him a sticker to wear and he chose this one, reading, “My HIV Status is ENLIGHTENED”. He did a lot of good for the work on HIV during his tenure. The top image, captured by Mark Garten, was of our campaign slogan projected onto the UN Secretariat in New York City as night fell to wrap-up the day’s events, although the campaign continued for months. It was one of the proudest moments of my time with the United Nations.

And still, there is so much work left to do, and the stigma continues to fuel HIV both within the UN and far beyond. Do your part and know your own HIV status. Not knowing your HIV status does not make you HIV-negative, it only makes you ignorant. Be sure, get tested. And please, while you’re at it, get vaccinated and boostered for COVID, too. Thank you on behalf of all of us who are immune compromised.