Category Archives: Kenn’s Project

AIDS Is Still Here, But So Am I! by Kenn Chaplin

I read Kenn’s blog, My Journey With AIDS… and More! pretty religiously, if you don’t you should definitely check it out. This crazy, lovely, important project bears his name as the originator in 2010, and I am pleased to present Kenn’s powerful piece as the last submission of the night.

I find the anticipation, whatever the outcome, of World AIDS Day quietly overwhelming.
“Not much,” I replied to a friend asking what plans I had the night before. I might as well have had dental freezing in my brain, such was the unacknowledged numbness.

When I think of World AIDS Day I think of, as a blur, the forty or, I’m sure, more friends and fellow travelers who died of AIDS long before, and some since, the chance to survive with complex medications existed.
It is such a blur that I do not wish to single any one out.

Nearly six years ago, a blogger friend in California reminded me of something I do not mention much about my family, and then it’s usually mysteriously anonymous, i.e. “someone else in whose footsteps I was following”. I always respected my brother’s own, non-blog, ways of carrying himself in public.

Let’s just say there was this guy I write about more than anyone else (me) with an older brother who, like me, is gay and has been living with HIV/AIDS since the 1980s. Both are openly loved and accepted by family, close and extended, and many friends.

When I “came out” to my parents in 1981 it was not a complete surprise when they revealed that my older brother had also come out to them a few years earlier. One of the reasons I had not been in on that, however, was the fact that I – at that time – was test-driving ways of suppressing my homosexuality, to the point where I joined a right-of-Baptist, left-of-Pentecostal church for awhile. The test-drive, as evidenced in my subsequent writings, ended in a high-speed crash into a spiritual wall. My internal emotional injuries were very serious.

After I came out to our parents my brother wrote me a letter (in those days before email and long before Facebook), another letter I wish I had kept. In addition to lending support and understanding, I recall the note offering some wise advice about the difficulties inherent in living out one’s sexual orientation in a gay ‘community’ which, at times, can seem like a very cruel world. (Rufus Wainwright, a favourite contemporary musician, profoundly captures this in his song “Poses”.)

To say that Craig and I became closer, after I had withdrawn from my ‘doth-protest-too-much’ stance against homosexuality, would be an understatement. However, to this day, I regret any actions that separated us during those times. The relationship thankfully evolved to being much more comfortable over the years.

I learned in confidence, in the mid 1980s, that Craig had been infected with HIV – news which Craig later shared with other family members.

With all of that background, I vividly recall having a picnic lunch, a few years later, with my Mom and Dad during a brief vacation I had taken deliberately to disclose my HIV-positive status to them.

This being 1990, my medicine bag only had AZT in it and yet it seemed like the heaviest thing in my back-pack that day. Knowing that I would need to take that capsule before the picnic party had returned to Mom and Dad’s home I now only recall these key moments of the conversation.

Kenn: “When Craig told you he was HIV-positive the best information he had, at that time, was that I was negative.”

Mom (sighing deeply): “Oh, don’t tell me…”

That was in the summer of 1990, a little more than a year after routine blood-work had first shown tell-all “counts” in reverse, certainly abnormal, proportions. (Those blood samples, from the spring of 1989, were later tested specifically for HIV and were found to be positive.)

That picnic seems like a lifetime ago. My parents and siblings gradually integrated this overwhelming information and were very accepting as I shared my story publicly, even via television and newspaper media. (One magazine article, originally meant as a simple tribute to my parents’ longstanding involvement in their community, included the traumatic events when my mother barely survived an attack of necrotising fasciitis – ‘flesh-eating disease’ – and how my father suffered a major heart attack as Mom was in the midst of her recuperation at home following more than two months of critical care hospitalization.)

In layer-upon-layer of irony Craig fell in April of 2007 and, tragically, hit his head, suffering irreversible brain damage. He died a few weeks later just days before what would have been his fifty-second birthday. Mourners shook our heads as we thought about Craig having survived twenty or more years of HIV/AIDS, quintuple bypass surgery just a year before, only to have a freak fall end his life so horribly.

I still carry Craig with me and, while we shared an AIDS diagnosis as well as our sexual orientation, he was his own man and I miss him as much today as any other.

The Photograph (Bob Bowers)

When I expanded the guidelines for Kenn’s Project in late November, one of the photos I had in mind for submission was this one, below, of my friend Bob Bowers, aka One Tough Pirate. But I didn’t ask. I was very happy to find it, with the following text, in my inbox this morning sent to me by Bob for posting.

Caption from the Reuters photo: “Bob Bowers of Madison, Wisconsin, weeps as names of those who’ve died of AIDS are read aloud at the AIDS Memorial Quilt on the National Mall in Washington July 24, 2012. Bowers, who has been HIV positive for 30 years, has lost dozens of friends to AIDS. The international AIDS 2012 conference is currently being held in Washington. Reuters / Kevin Lamarque”

BobBowers

On a personal note, my pilgrimage to see the AIDS Quilt in its entirety on the Washington Mall was surreal and overwhelming emotionally to say the least! I was deeply honored and moved to more tears to read 8 pages of names of those who’ve succumbed to HIV/AIDS. It was a healing and triumphant experience for me in so many ways!

Once, We Were Heroes by Mark S. King

In addition to writing My Fabulous Disease, Mark is an award winning columnist, author, and AIDS advocate. I’ve read this piece several times, and when he re-posted it on Facebook, today, I just had to ask if I could share it here.

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.

Emil 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.

t 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.

There 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.

My 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.

Jeremy 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.

The 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.

You can watch the accompanying video on Mark’s site.

My Journey to World AIDS Day 2012 by Jeffrey Newman

Today is World AIDS Day. And whether, you are HIV-positive or not, if you’re reading this, you know someone who is, and who is living with it.

Like many “awareness” days, today millions of people come together to show solidarity for people living with HIV and AIDS. I am grateful for that.

But for me, every day is world AIDS day … a typical Saturday, no different than any other day of the year, when it’s also brown-haired, blue-eyed, left wing liberal, atheist/Buddhist leaning gay Jewish guy living in New York day.

As long as I can remember, HIV and AIDS has been a part of my life, in one way or another.

When I first heard about it in the early-1980s, I was a 16-year old, newly out of the closet kid. It was something that “those other people” got: the stereotypical older gay guys who partied at Studio 54 and lived in the Sodom and Gomorra ghettos of San Francisco, Fire Island and New York City, as the media would have everyone believe.

By the end of the decade, I’d learned that was anything but true, with the passing of a high school friend, Gino, and one of my very best friends, Carlos. Two, young guys, my age … just like me.

And I met two of the most incredible people I’ve ever known. Both of whom told me the very first day I met them that they were HIV positive, and both of whom forever changed my life: my first true love, Joey, and my dear friend Andrew. At a time when people were calling AIDS a death sentence, both Joey and Andrew lived life with complete optimism and hope. It was inspiring … even if it wouldn’t be enough to save them. And I carry their spirit with me, two decades later.

By the mid-1990s, I’d lost 10 of my closest friends, and dozens of acquaintances.

Because of them, I became an activist and vocal champion of the cause. I wore a red ribbon on my lapel, had red ribbon checks, chaired the AIDS Walk in Miami … and was on the front lines trying to make a difference.

With the new millennium, the AIDS horizon began to change, as we entered an era of hope. People were no longer dying, they were living. They were not victims, they were survivors.

And when my boyfriend Stephen and I tested positive in 2001, it was that hope and my optimism that would rise up and inspire me to live every day, not riddled with fear, but with a determination to embrace my new found status and walk with my head held high.

I owed it to those who touched my life in such beautiful ways to stand tall and fearless.

From the minute I got my news, I never hid it from anyone. I told my friends and family that day and knew that by putting a face with the disease, it humanized it and took away the shame, so that people would realize that people with HIV are just like them. We’re just like everyone else. We are their sons, their daughters, their loved ones, their friends.

Someone recently asked me if I could write a letter to my HIV, what I would say. My answer was simple: “You had me at hello.”

And on a day like today, it’s hard not to reflect back over my life and ask myself, if I could go back in time to the minute before it happened, would I change the outcome? The answer (98 percent of the time) is no. Because HIV is neither the enemy, nor something I fear. It’s who I am. It has made me the man I am today: a person who knows there will be a tomorrow and that with my voice and putting myself out there to inspire and lead, World AIDS Day will continue to be a day to make a difference.

Much like the evolution of Worlds AIDS Day over the last 30 years, the life lessons I’ve learned during my personal journey followed a similar trajectory:

  1. There are no “those people.” It’s an “us” people. “Them” is a dangerous label, and one of the biggest misunderstood concepts.
  2. HIV and AIDS don’t discriminate by age, gender, race, sexual orientation, political affiliation, ethnicity or socioeconomic boundaries. We look just like you, travel in your circles, and are as much a part of the 47% as we are the 53% and the 3%.
  3. We may not have a cure for the disease, but we can curb the ignorance, get the facts out there and end the stigma.
  4. And most importantly, we can the message out there that it does get better. It is getting better. And it will get better.

As I said at the beginning of this, today is World AIDS Day for the masses, but for people like me and Jayson, every day is world AIDS day. I hope, as with other awareness campaigns for diseases like cancer, autism, Alzheimer’s, Parkinson’s, and such, we remember to raise awareness to it, not just today, but on the other 364 days a year.

My name is Jeffrey. I am an HIV+, brown-haired, blued-eyed, left wing liberal, atheist/Buddhist leaning gay Jewish guy from New York. Happy Saturday.

Related
Proving It Gets Better by Jeffrey Newman

Diagnosis: A Poem by John

I met John around 2005 on MySpace, and our friendship is one of only two I brought with me in the exodus from MySpace to Facebook. John was diagnosed with HIV in 1996 (?) and with full-blown AIDS 8 years later; he wrote the poem below a day or two after his diagnosis with HIV.

My tenth day in the hospital
and I’m on the phone
with Glenn.
“It’s just that these doctors
are so fucking
unprofessional-“just then
my doctor pokes her head
around the curtain.
“Oops, I gotta go.”
“Is your doctor there now?”
“Yeah”
“Did she just hear you?” he’s laughing.
“I think so, bye.”
She comes in flanked
with her usual interns and
a man I did not know.
He had a beard
but kind eyes.
He asks if he can sit
in the chair by the bed,
but we both know
that he didn’t have to.
He’s too polite,
too gentle
I think.
He moves very slow
with exaggerated motions
almost as if
I had a gun on him.
This is just no good.
“We got the results back.”
“And?”
“There are traces of HIV in your blood.”
“Traces?”
“You are HIV positive.”
I was truly surprised
but felt nothing.
There was no big shock
or anger
or tears.
My emotions are sporadic at best
which is helpful in times like this.
I don’t remember exactly
the conversation that followed
but I was quite witty
and at ease,
which made them all
very uncomfortable.
I felt bad for them
to have to tell people
this and I wanted to ask
how they dealt with it,
but I
did not.
It would only confuse
them further if I showed
more interest in
their pain
than
my own.

Proving It Gets Better by Jeffrey Newman

Jeffrey Newman runs the group “HIV and AIDS – Get the Facts – Curb the Ignorance – Proving It Gets Better” on Facebook. It is easily one of the best groups I am privileged to be part of. When I posted my call out for Kenn’s Project early last month, he sent me this piece, which can be found in the group docs, for posting. Today I asked him if I could also post his World AIDS Day piece, he said yes, that will be appearing here shortly as well.

When I created a group on here, on August 8, 2011, called “HIV and AIDS – Get The Facts – Curb The Ignorance – Proving It Gets Better,” the last thing I expected to do was talk about my experience as someone with HIV. It’s not something I’ve ever done. Not publicly at least.

But, people need to know that there’s hope and life outside of HIV. I’m proof that “it gets better.”

I share my story because the ignorance and stereotyping needs to be curbed. HIV is not something to be ashamed of, nor is it something to pity or view as a death sentence. Life is great. I love my life.

To anyone who feels alone or is afraid, reach out. “It gets better” are not just words. They’re truth. They’re three important words to keep in sight range, and they are rich in meaning and power.

And for those people who haven’t been touched by HIV or AIDS in some way or think they don’t know anyone with it, now you do. Now you have a face to put with it.

Here’s my story. Take from it what you will.

In February, 2001, my best friend and then boyfriend got really sick. He was already living with a compromised immune system, so it didn’t sound off any huge alarms. On Valentine’s Day eve, I ended up rushing him to the ER, and he was hospitalized for a week. For various reasons, the doctors initially ruled out HIV. So it wasn’t on our radar at all.

A few days after he was released from the hospital, the nurse practioner at our doctor’s office called to say I needed to bring Stephen in. I explained how sick he was and asked if it was really necessary. She said it was. And in the flash of that moment, I had a suspicion about what was coming. Unfortunately, Stephen didn’t. And the cab ride to the doctor’s office didn’t seem the right place to suddenly raise the possibility. Plus, I figured, this is our trusted, compassionate doctor who’s been treating us for a few years; he will be gentle and comforting and sensitive. So, you can imagine Stephen’s utter shock when the nurse practioner, and not the doctor, walked in and blurted out, “well, your results are back and your HIV positive.”

Talk about ripping the Band-Aid off.

Stephen literally collapsed on the floor. We had to carry him out to a cab. Then he lay in a self-induced comatose state for four days in his apartment, with the lights turned off, no TV or music, convinced rapture was upon us. The only signs of life in the small corner of his living room, where I sat with a small desk lamp on, sitting at his computer for 96 hours, searching the Web for answers.

Despite spending my entire adult life as a champion of AIDS causes (I lost my first friend to AIDS when I was 20), wearing red ribbon pins, using red ribbon designed checks and chairing the AIDS Walk in Miami in 1995 — even though I was HIV negative — I realized I didn’t know nearly as much as I thought I did. Actually, I didn’t know anything really. The only thing I knew was that my boyfriend was freaking out and there wasn’t time to get bogged down in the emotional aspect of it. I had to be the strong, supportive, loving, and optimistic, glass is half full boyfriend.

There was no Facebook or social networking sites. The Internet was still in its infancy. AOL was where the action was; so I logged into every chat room that I could to learn as much as possible about HIV and what it all meant. What I learned was so much more than I expected. I discovered there were a lot more people out there living very happy, successful and healthy lives who were HIV positive then I realized. Turns out some of them were friends of mine, and I had no idea. So much for all those theories that you can tell a person has it just by looking at them.

Here are two things that most people do not know about me, besides that I’m HIV positive (guess they do now): One, I never had that OMG moment that most people do. When my boyfriend found out he was positive, it nearly destroyed him. He thought it was a death sentence. And he was coming apart at the seams, spiraling down into the abyss.

I wasn’t powerless. I had knowledge, and that was power. I knew that it wasn’t 1987 anymore. In was 2001. And I knew that the landscape had changed; so did the outlook for people who tested positive for HIV. Everything I read, every person I spoke to and every doctor I consulted, all said the same: People were no longer dying from HIV or AIDS. It was not a death sentence. I had science and facts on my side here, not some MGM musical song and dance distraction.

I also knew that just because he (or soon, as I will explain below, we) were HIV positive, it did not mean we had AIDS or that we were going to die.

Two: Unlike my boyfriend, I didn’t have a doctor come into the room and give me my news.

I found out from a doctor on my cell phone call while I was at the grocery store. I literally was paying the cashier when the phone rang. There was no one around me. There was no one to tell me it was going to be okay. And more importantly, there wasn’t any time to have dark and gloomy thoughts. First, I had perishables. So, I had to get my groceries home. And second, I already knew it was manageable and I knew that for my boyfriend and for my family, I had to be the voice of reason, hope and optimism.

A couple of months later, 9/11 happened. Stephen and I stood and watched as buildings came crumbling down and more than 3,000 lives were taken in a matter of minutes. It really put things into perspective for me. If Stephen and I could survive a terrorist attack (his office was a few blocks from the World Trade Center and I had a job interview scheduled at the WTC later that morning), we could certainly beat HIV.

BTW, for anyone who hasn’t done the math, it’s been just over 10 years since I was diagnosed, and I’m healthier than I’ve ever been.

I should also add in that my parents treated news about my HIV like they did with learning I was gay. My dad got up, put his arms around me and told me they loved me no matter what. And if either one of them ever felt anything bad or negative about either situation, they’ve never said it to me. They’ve only offered me unconditional love and support. Something I’ve never taken for granted and I’ve always try to pay forward.

Until yesterday, I never really stopped to think about how I processed my diagnosis.

I have never once in 10 years thought of myself as living with a terminal illness. Not once. I don’t believe it will be what kills me. My immune system is amazingly strong. The only time I’ve been sick in the last 10 years was seven years ago. Being HIV positive does not define who I am. It doesn’t define my relationship, with friends, family or my partner. And it certainly doesn’t cloud my view of the world as being the glass half full.

In many ways, my life today is 100 times better since being diagnosed. It was freeing and liberating. It got me out of my comfort zone and allowed be to re-exam my perfect, no complicated perception of how my life is supposed to be. It allowed me to experience life in ways I may not have otherwise been courageous enough to do. Life has gotten better. It is better. It continues to get better. Hope is always around, despite all the woes and worries of the world.

Life is full of twists and turns. Whether it’s HIV, a tragic loss of life, a down-turning economy or some other life event, whatever is going on in your life has likely happened to lots of other people. You might feel isolated and alone, but you don’t have to be and you’re not. There are people out here – out there — who understand what you are going through and are willing to help you through it, because it does get better. It gets so, so, so much better.

It’s okay to be scared. It’s okay to be human. And most importantly, it’s okay not to be okay. That’s part of the process with anything in life.

The world is bright if you look at it the right way.

HIV is not a death sentence. It’s manageable. You can take control of it and not allow it to control you. Those of us living with HIV need to lead by example. Stand up. Put a face to it, and help take the stigma off of it. Be heard. Put your hand out to help those struggling. And for those who are HIV negative, you need to live life with an open, unconditional, accepting heart.

Together, we have an enormous power to be the change we want to see in the world. We have the ability to inspire and get the message out there for people to: get the facts, ignore the myths and prove that life gets better.

(Note: In the year since creating the HIV group on here, it’s gone from five members to nearly 2,000. It continues to grow and educate. The message is getting out there. That’s more then I could ever have hoped.)

Where Has Your Red Ribbon Gone?

This also appears in its entirety on my TheBody.com blog, Flaming Red. When I sent this to Olivia earlier this week (although not early enough in my opinion!), I hadn’t planned to use it as part of Kenn’s Project, kind of like I hadn’t planned to send my submission for Kenn’s project in 2010, More Life, to Olivia. But I love this piece, and I love the title Olivia thought of for it–it is truly brilliant. Today–and just about every day this year–more than any other emotion, I am grateful. Grateful for the chance to do this, grateful for Edward, Olivia, John, Wayne, Emerald, Kenn, of course, and the countless others who’ve been a part of my life for all or part of these 15 years. I am grateful for medical advances, and for the groundbreaking success represented by the life of Timothy Brown, with whom I am honored to be Facebook friends. And I wish you all so much, but most of all, I wish you ‘more life’. Without further ado… Where has your red ribbon gone?

“Cut red ribbon 6″ in length, then fold at the top into an inverted ‘V’ shape, use safety pin to attach to clothing.” — early Visual AIDS handout

Six years after the idea to use a red ribbon as a symbol of HIV/AIDS support, awareness, etc, was hatched in 1991 at the Visual AIDS Artists Caucus, on October 8, 1997, Edward pinned a red ribbon to my cream turtleneck. I was, as most of you know, in Mrs. Sullivan’s grade 6 class at Brookhouse Elementary and filled with nervous energy and trepidation that was tempered with excitement. Naturally, a bit of the same fear I still take into all new endeavors was also present.

I remember the thin red threads that ran through my mostly grey tartan skirt, a skirt I thought made me look most grown up and impressive. I also remember, and was painfully conscious of at the time, the loud click of my heels, borrowed from my mother, in the empty hallways.

My first red ribbon was nice, enamel — as are most of mine — and it sat there on my cream turtleneck, noticeable, like a beacon.

As I transfer yet another red ribbon from my fall jacket to my winter coat, I am reminded of the red ribbons that followed that first one. It would be nice, sweet, and moderately poetic, to say that the red ribbon I now wear is the same red ribbon Edward presented me with in the foyer of Brookhouse Elementary, but that is not the case.

I received my second red ribbon, also from Edward, in 2005 or 2006, with Hiroko, a woman I still fail to be able to accurately describe, who was visiting from Japan to write a book about the Titanic and Halifax Explosion.

We attended the Christmas craft show at the Halifax Forum, where I was asked what my ribbon was for, I told her, and the response was something very similar to that detailed in Laura Engle’s “Where Have All the Ribbons Gone?” which appeared in the January/February 2000 issue of Body Positive. I smiled as I closed my eyes and tried to recreate Barrington Street well enough to explain where exactly the AIDS Coalition was, and that yes, it did still exist, AIDS activism is still relevant.

I received another red ribbon, this one of the actual-ribbon variety, at the World AIDS Day vigil I attended in 2010, which is something I’ve meant to write about, but as with describing Hiroko, have failed miserably at. What I remember most about that night are the quilt panels from the Canadian AIDS quilt that lined the wall, and — during the reading of the names — the lady who read Holly’s, who paused and, her voice breaking, added “My Holly”. I know nothing about Holly, except that, according to the list, which I downloaded recently from the AIDS Coalition of Nova Scotia’s website, she died in 2006.

The ribbon I wear now is my fourth, purchased this summer in New York City. With mere hours to go before meeting Olivia, et al, at Max Brenner, I retrieved Broadway tickets for Nice Work If You Can Get It and Sister Act, and then detoured into the nearby Broadway gift shop. Mulling further purchases, I peered down through the glass counter at pins from shows, mostly The Phantom of the Opera, when I saw the red ribbon. I stared at it so long in intense debate with myself over whether or not to purchase it, that the lady did not ask if I wanted to see it but instead slipped it out of the case and set it on the glass in front of me.

Of course I bought it, counting out ones on the glass counter.

Engle writes of the red ribbon “… for whatever reason or combination of reasons, the red AIDS ribbon is less ubiquitous than in years past. To some, it remains a symbol of continued commitment, even in the face of AIDS apathy. To others, it has itself become a symbol of the fickleness of the self-proclaimed philanthropist. To yet others, it is just yesterday’s accessory.”

To me, this ribbon is resilient, like this community (to borrow from Angels in America, again, you are fabulous creatures, each and everyone), and like some friendships.

So this year, take your red ribbon down from wherever you keep it the other 364 days of the year. If you don’t have one, find one. If you’re not sure where to find one, call your local AIDS service organization. While on the phone, or there in person, make a donation. Every little bit helps, and I’ve said it before, and I’ll say it again, ASO’s are chronically underfunded and need support to continue their wonderful work.

Most importantly, of course, after you’ve observed World AIDS Day, given yourself time to grieve and/or celebrate, or whatever you do to mark December 1, on December 2, take off your red ribbon if that is your preference, but make a commitment to continue your support. In Kathe Kollowitz’s words “I am in the world to change the world.” So am I, so are you. Whatever you do for the remaining 364 days of the year that aren’t December 1, make time in your busy life to change the world, and join us in the fight to end AIDS.

Finally, this piece is so late coming because I spent so much time recruiting for my own World AIDS Day project, called Kenn’s Project, I have been utterly devoid of inspiration. You can read the submissions, including one from Edward, as they roll out December 1. You can also submit your own piece, if you so desire; here are the very loose guidelines.

And, last but definitely not least, I owe a debt of gratitude to Edward, Anthony, Wayne, Emerald, Patricia, and of course, Olivia. Without these people this piece especially would not exist.

My Story by Wayne Bristow

Wayne lives in Geulph, Ontario. In his own words: “I am a gay father, grandfather and my goal is to become a great grandfather. I have HIV, HIV doesn’t have me.” He writes for PositiveLite.com, Canada’s Online HIV Magazine.

Hello,

My name is Wayne, it is my real name, for the last three years I have been telling it all, I no longer have anything to hide. If you were to Google my name its all there.

I am a 58 year old gay man. I have always been gay but I grew up in a time when it wasn’t accepted. You could actually be put in jail for taking part in homosexual activities. This would be in the 1960s during the days of the Stonewall Raids in New York City. I was living near the American border and we would view more U.S. television than Canadian so I would see it daily on the six o’clock news. It really frightened me, I couldn’t see myself going through all of that.

I built my closet and hid. I was being told by peers and adults, “they should get married, have kids, it will change them.” When I turned 16 in 1970 I quit school and left home but I continued to hide in my closet. I did marry and became the father of three by the age of 23.

Just before my first child was born, I snuck out of the closet and I cheated on my relationship with my child’s mother, with a man. I was 19, we weren’t legally married, at the time I didn’t feel it was all that wrong. I had heard of a cruising area in Toronto, I went there, I met someone and I learned what it was that I was missing. It all seemed more normal to me, but it wasn’t enough to force myself out of that closet, not yet. I did venture off from time to time over the next few years but I remained in that closet until I turned 37. It was then that I decided to live as a gay man for a year before I would tell my family, my kids and friends.

It really became a whole new life, I felt reborn, I was like a kid in a candystore. I had a chance right off to be in a relationship but I felt I missed so much. Eventually I got around, and around, it became an addiction. I found all of the places where I could meet other gay men and soon found much of it online in chatrooms, I could now talk about things I’ve never been able to share before. Then it came time when I wanted to meet someone and settle down but it wasn’t going happened given my history and lack of anyone wanting the same thing as I did. Many of my friends were settling down. I continued to hang out in chatrooms and the bars, more one night stands.

While online there were times when people would ask questions about safe sex, people just looking for casual sex, sometimes bareback sex. I would always caution people to always practice safe sex. I would say, “If a person didn’t want to use a condom then he didn’t care about himself and he won’t care about you.”I was becoming quite the advocate online, I would private message people and suggest that they contact an AIDS organization in their area and get some current information. I truly believed I knew enough to keep myself safe, I wasn’t going to get HIV.

In late 2001 I developed a blood disorder called Idiopathic Thrombocytopenia. In short, I lost most of the platelets in my blood. If I was to cut myself, my blood wouldn’t clot and it could be life threatening, as well, if my stomach was to tear I could bleed internally. I was put on various treatments for the problem and within a year it was under control and I’m still in remission. So, basically I had a compromised immune system during this time.

So now we are at late 2002 or early 2003, before my 49th birthday, I was battling self esteem issues. I was lonely, I needed some contact with another person. I made a few weekend trips to Toronto, I drank too much, I still couldn’t connect with anyone in the bars so I end up in the bathhouses. It was the perfect recipe for reckless behaviour, and if you can’t get lucky in a bathhouse, you were hopeless. It wasn’t anything resembling a relationship, I just needed that contact, if only for a few hours or a night.

Around this time I thought it was wise that I restart being tested for HIV again.

On April 3rd, 2003 I received a phone call from my G.P., he wanted me to go into the office for my results. I was on my way to a dental appointment to have a bad tooth removed. A tooth that should have come out months before but I kept putting it off. The doctor isn’t suppose to give the results over the phone but I insisted he do it because I had to keep this appointment. As it turned out, the bad tooth was the entrance point for HIV to enter my body.

When I heard my doctor say the words “HIV Positive” it didn’t phase me, my first thought was, “at least he didn’t say cancer.” Cancer scared me more. I had friends who were HIV positive, I knew I could live with it, there were better medications now. I wasn’t sick, I had no symptoms, they believed they caught it as soon as it would have been possible, within the first three months incubation period. I didn’t require any medications, my CD4 was high in the 700s and my Viral Load was undetectable. The had to retest me because it could have been a false positive, but it wasn’t. My doctor said I was in a place they like to see everyone in. This continued for 7 and a half years.

July 2010, my CD4 dropped to 330, it became necessary to start on meds. Around this time my HIV status went viral online by people I thought were my friends. We had a disagreement and they sought to ruin my life. They hoped that someone would come forward and say that I had sex and never told the person. They claimed I didn’t tell people. I sat in the chatroom that day and watched all the cruel things people called me, stuff like, I should be shot, run over, I was the worst of the worst.

Shortly after, it started within my family as well, but I chose to turn this negative into a positive, I got involved with my local AIDS organization. I attended workshops and courses to learn how to take better care of myself and help my peers. I began to blog on my ASO’s site and tell my story to put a face to this disease and try to end the stigma surrounding HIV. Later I found PositiveLite.com, an online HIV magazine, I began to write for them as well. To date I have written nearly 100 articles, not just about myself, I write about homophobia and most of all HIV and Aging. Its something I am very passionate about. I will be sitting in on a Coalition my ASO is putting together to work with healthcare and the LGBTQ/HIV community and prepare them for our arrival.

What World AIDS Day means to me is that it gives the world a time to remember those who fought this fight before us. The scientists, the medical community, the Gay community, everyone who worked tirelessly to help other people continue to live. To all of those who went through all of the first medications, some lost their battle and some are still with us today, they are my heroes, because of them I am able to live a good life, a long life.

By the year 2015 over half of the people living with HIV now will be over the age of 50, I’m already there. We are the new leaders to take this disease to the next step. Right now many people living with HIV and LGBTQ people feel they will have to go back into the closet when they reach the time that they end up in the healthcare system. We need to make things better within the system so that we can live out our lives with dignity and not be discriminated against. The healthcare system is not ready for us, not by a long shot, much work needs to be done and we are in a position to model the way.

How has HIV/AIDS impacted my life? by Edward

Edward has been a part of my life since 1997, when I was in grade 6 and met him in the course of a school science project. He had been diagnosed with HIV four years previous. When interviewed (by me), in 2005 his said his hopes for the future were “to live, to love, to work, to grow, to advance my career, to obtain financial security…” I wish all that and more for him.

I have experienced as many, if not more deaths than my grandparents who lived through the Second World War. My grief is immense, constant and undulant.

As I wait for either a cure or death, I feel as if I’m hanging by a thread, dangling over a precipice.

I am alive. I have survived living with HIV for over 20 years. I am financially and physically stable compared to my friends and my peers. I live with terrible guilt.

I cherish life. I fear death.

I feel tarnished.

I realized that I am beautiful.

Two Poems by Emerald Cavoto

Emerald is the founder of The Awake and Alive Project, which tells the stories of people living with and affected by HIV/AIDS . The hope is to raise awareness and funds to find a cure for the virus. The Awake and Alive Project premieres today.

Untitled

AIDS is loss
AIDS is sorrow
AIDS is watching the ones you love suffer
AIDS is silence
AIDS is denial
AIDS is so many words its blends together in a cacophony of sounds
AIDS is a ribbon
AIDS is a quilt
AIDS is a song
AIDS is a play
AIDS is an art
AIDS is a retrovirus
AIDS is venereal
AIDS is thirty-one
AIDS is brick red, blood red, fall red
AIDS is a movement
AIDS is a community
AIDS is Africa’s problem
AIDS is the UN’s problem
AIDS is humanity’s problem
AIDS is the world’s problem
AIDS is addiction, depression, malnutrition, and rape.
AIDS is our problem.
AIDS is darkness
AIDS is a new light
AIDS is a leaf turning, a wind moving, a pulse throbbing
AIDS is sleep, and so many nights alone
AIDS is blood draws and hospital beds
AIDS is medication, healthy eating, and holistic healing
AIDS is a reason to live
AIDS is ghosts who live in our hearts
AIDS is pain
and AIDS – AIDS is healing

Stained Glass Masquerade

All in gold gilded masks
Preaching of sin and hell
Preaching heaven and His love
A Stained Glass Masquerade
“Jesus hates Gays!” they cry.
“AIDS is a punishment!”

What a bloody charade.
When our homes are torn in two
When family ties divide us
Do we blame a virus?
Do we blame a pulpit?
Or do we blame a “Loving God”

Nothing of love is shown now
“Gay!” is their battle cry now
Love is for straight people
“Good people don’t get AIDS”
Jesus, save us from Your friends