Category Archives: AIDS/HIV fundraising

Reasons to Ride, Reason 5 of ??: A Lil Help from My Friends

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Cycling: ALL ABOUT FASHION. Me and a fellow rider wearing shiny mylar duds, BTC 2008.

This one reason alone might be incentive enough to spend my weekends from April through September doing things that would seem crazy otherwise—drinking smoothies by 6am, cycling out into the morning while the sun is coming up and I’m still half-asleep, having “lunch” before 11am, spending five or six hours riding instead of eating brunch with my spouse, and wearing Fashion Victim cycling spandex, cycling shoes, and a helmet for most of the day: The people, the people, the people. The number of fabulous people I come into contact with because of the ride and the training it necessitates is staggering. Here’s who I’m talking about:

The people at Housing Works, the beneficiary to the ride this year: amazing. They do everything in the name of fighting homelessness and AIDS. Housing. Medical care. Behavioral health services. You name it. They do a ton of stuff locally—many of you know them through their numerous retail thrift stores around the city, but they do a lot more than that so it’s worth checking out the NYC section on the primary website—and they do a great deal of national work (e.g., lobbying Congress on AIDS/HIV-related legislation) and international work as well (e.g., they have been doing major initiatives with Haitian activists living with AIDS since 2008).  The scope of their programs surprised even me and made me proud to be working to support all they do.

The Braking the Cycle participants who ride and crew this ride, which supports what Housing Works does: amazing.They are my fellow riders, and many have become close friends who are more like family. Cliché as it is, they make me smile and laugh, they inspire me, and they give me a hug and comfort me when I cry. They also dress in drag and ride bicycles (yes, some of them at the same time!), which is a definite plus, too, though it’s somewhat dispiriting when a gay man in fish nets has better legs than I do.

And yes, all the people like you, dear Reader, who have supported me in the past and who are supporting me doing this ride: amazing. A million thank-yous wouldn’t be enough to express my gratitude and how much your encouragement helps. Donations and contributions are coming in from family, from friends, from old friends who have resurfaced, from colleagues, from second-hand connections I’ve never met. Case in point: Just the other day I had an email exchange with the lovely people at the jewelry shop when Jen and I got our wedding rings, and I mentioned the ride when I was asked what was new with me; I didn’t even think to ask for a donation in that moment, but the ride links are in my email signature, and the next day, a contribution was posted on my First Giving page. All my supporters out there, each and every one of you: you rock.

Equally important, I’ve been in touch with hundreds of people about this cause and in the process, I’ve gotten more messages of love and support and cheer-leading from all of you than I ever could have imagined. As I’ve noted, it’s been a physically challenging season, so the gestures of support really been a wonderful boost. Your words keep me going on the days when I’m exhausted, cranky, or feeling demoralized and wondering why the hell I’m doing this. So thank you thank you and thank you again—and keep it all comin’… I’ve still got a month to go here before the ride! Hundreds of miles and thousands of dollars to go before I take a ten-minute break and sit on something that isn’t a bike saddle.

If I listed all the lives touched through this process, my individual Braking the Cycle process alone—of training, of asking for donations, of blogging, of talking about AIDS and Housing Works, of reminding people to donate—all by name, you would be scrolling for eons through pages and pages of names.

Instead I’ll leave you with a photo array of images from the three Braking the Cycle rides I’ve done in past years. They are far from comprehensive and only begin to scratch the surface of what the actual Braking the Cycle ride experience is like, but they are a concrete reminder of why showing up is always worthwhile and meaningful. You never know what will happen on the road, where the possibility of change is ever-present; what seems impossible one morning can feel welcoming the next.

When I signed up the first time in April 2008, I had no idea it would change my life. I didn’t know a bike ride of all things could change me. I truly hadn’t a clue that four years later, I’d have logged nearly 9,000 miles on a bicycle and raised nearly $30K to support services for those affected by AIDS/HIV. (That $30K figure does *not* include this year’s ongoing fundraising, by the way, which exceeds $4K as of this writing and, like me on my bike The Blue Streak, keeps climbing.)  I get kind compliments from people sometimes about what I’m doing and what I’m giving, and it’s flattering and energizing to be praised. But the fact is, I’ve always received and gotten back far more from doing this than I’ve given, for which my gratitude is immeasurable. The pictures will, I hope, give you just a tiny taste of what I mean by that.

Yep, that’s me in the foreground. So fast I’m blurry… When arm warmers come back into fashion, I will be so ready.

The fabulous Tim Fitzpatrick who kicks my ass going up hills every time. My better half Jen, also a Braking the Cycle crew member, is giving him a pep talk.

Yes. Photographic evidence. I hollered my way up this beast of a hill in Connecticut. Twice. In 2009. And then again in 2010. Successfully. Perhaps the screaming helps? Mount Archer (AKA Mount Eric), which I’ll be facing again on September 29, still scares the crap out of me.

William Thompson, flat on his back, for a change. Would you believe this guy has done multiple marathons, triathlons, and Ironman events? He always looks as fresh as a daisy, too. I am certain a painting of him is sitting in a closet somewhere, aging.

Trust me. Simon Chung, who does, in fact, ride his bike very well in outfits like this, is a very, very Bad Witch. He also has fabulous legs.

Believe what you read. 90 miles and still smiling.

If you’re friends after 300 miles on the road, most of it through rain, you’re really friends: Terry Christopher, Kerri Fox, Gregg Passin,me, Rich D’Amico.

Look! A Braking the Cycle ride day when it’s not raining! We look pretty decent considering we’re about four miles from the end of the ride. Thomas Capobianco, me, Gregg, Rich Monreal, Terry, Kerri, John Gonzalez, ?, Steve Kolbo.

My friend Clay Williams hugging previous BTC rider Greg Baker at closing ceremonies.

This isn’t a photo from the ride. Obviously. But this is my family, and all this biking and training and fundraising and all the rest wouldn’t be possible without their love.

How often does one get to participate in something that make one feel like this?

Reasons to Ride, Reason 4 of ??: In Memory of Dennis (1950–1987)

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Dennis was the first person I knew who was HIV+. He is also the first person I knew who died of AIDS.

I was nearly 15 when Dennis became ill. I don’t even know how long Dennis was sick before he died. My hazy memory and my instincts tell me it wasn’t very long.

In point of fact, I didn’t and don’t know much about Dennis first-hand, except that he was a constant in the thread of my family’s history while I was growing up. He was a journalist, and he spent most of his adulthood traveling the world, hopping from one political conflict and hotspot to the next to report on what was happening. So I didn’t see him often, but I had known him my entire life. Dennis was one of my mother’s best friends from childhood. My mother, who was born in Bucharest, had only two friends who date back to that early part of her life. Dennis was one of them. When the two of them got together in person, the air was filled with a dizzying barrage of Romanian. My mother has no siblings, and Dennis as close to an uncle as I ever had on that side of the family. Which is what he was, really. Family.

My mother could say a lot more about who Dennis was than I could and has enough personal memories of him to make up a book. These are the things I know about Dennis:

Silence = Death Digital ID: ps_mss_cd15_218. New York Public Library

Silence = Death ACT UP poster, c. 1987-1995. Courtesy of New York Public Library Digital Gallery.

  • He was funny.
  • His full laugh was a high-pitched giggle that went on and on and somehow gave everyone in the room permission to laugh no matter how silly it sounded.
  • He was fiercely intelligent.
  • He loved politics and debating.
  • He loved holding court with people.
  • He had secrets.  Before moving into journalism, he worked for the State Department. He was often evasive about where he was going for work and why. But it seemed that wherever major political trouble was brewing, there he was. I remember my mother musing that it wouldn’t surprise her at all to discover Dennis was some kind of covert ops spy.
  • He knew many languages.
  • He seemed to know everyone and have friends everywhere.
  • He wasn’t handsome, but he had a kind face.
  • He loved to have fun. One of my few concrete memories of Dennis takes place at a party. I remember Dennis’ insistence on dancing, even though no one else was.
  • He was closeted, both about his sexual orientation and later on about his HIV status.
  • No one talked about Dennis being gay.
  • No one talked openly about the cause of Dennis’ mysterious illness when he got sick. His obituary in The New York Times was three paragraphs long and said he died of cancer.

Dennis was 37 years old when he died. I am nearly three years older than that now. If he had a romantic partner, his obit didn’t mention it.

A lot of things were different in December 1987:

AIDS and HIV had been around for six years, since 1981.

AIDS Treatment for All! ACT U... Digital ID: 1635828. New York Public Library

An ACT UP poster, c. 1987-1995. Courtesy of New York Public Library Digital Gallery.

President Ronald Reagan had been in office since 1981.

By December 1987, 71,751 cases of AIDS had been reported to the World Health Organization. The greatest number, 47,022 (65.5%) were reported by the United States. Both those figures are cumulative, since the first cases of the disease were reported in 1981.

When you contracted HIV in 1987, you were pretty certain you’d not only die, but die relatively quickly.

AZT, the first antiretroviral drug to treat AIDS, had only been FDA-approved for nine months.

ACT UP (AIDS Coalition to Unleash Power), the influential advocacy group devoted to working on behalf of people with AIDS and to shaping public policy, medical research, and treatment for the AIDS pandemic, had only existed for nine months.

The American Foundation for AIDS Research (amFAR) had only existed for two years.

Silence = Death Digital ID: 1577323. New York Public Library

Silence = Death, Keith Haring, 1989. Courtesy of New York Public Library Digital Gallery.

Artist Keith Haring was still alive and would be for another 27 months.

Housing Works, this year’s Braking the Cycle beneficiary, had not yet been founded.

Gay rights activist Cleve Jones made the first panel for what would become the AIDS quilt, in memory of his friend Martin Feldman.

April 1, 1987, marked the first time Reagan gave a public speech on the disease.

Reagan’s second major address about AIDS was given on May 31, 1987, at a dinner honoring the American Foundation for AIDS Research (amFAR).

Abstinence and morality were emphases in both of Reagan’s speeches.

Even if Reagan’s claim on May 31 that “spending on AIDS has been one of the fastest growing parts of the budget,” was accurate, it was because there was nowhere for the numbers to go but up. The proposed allocated monies for AIDS in 1987 was $416 million, and only half of that was at the urging request of the Reagan Administration; Congress requested the other half.

United States government federal budget, 1987. Federal funding for AIDS accounted for .0038% of the total health budget for that year and .000416% of the overall federal budget.

Without any context, $416 million might not sound so bad. To put it in perspective, total federal spending on health that year was $110 billion, 11% of a $1 trillion ($1,000,000,000,000) federal budget. What that means? The federal budget’s spending in 1987 on AIDS, which Reagan boldly pronounced to be “Public Health Enemy #1,” accounted for .0038% of the federal government’s spending on health and .000416% of the overall federal budget. So little it wouldn’t even show up as a sliver on the pie chart reproduced here.

Federal defense spending in 1987 was 33% of the budget, or $330 billion.

People were so scared of HIV at the time and the ignorance about how one got it was still so common, many were afraid to touch with someone with HIV. Which is why it was a big deal that in 1987 UK Secretary of State for Social Services Norman Fowler became the first person to publicly shake hands with an AIDS patient. Even some of the educated, knowledgeable friends and family of those with HIV or AIDS were terrified they would contract it because at some point, they’d kissed the patient on the lips as a social greeting.

United States government federal budget, 2012. Federal funding for AIDS accounted for .034% of the total health budget and .0075% of the overall federal budget.

It’s 2012. Federal spending on health today is 22% of a budget of $3.8 trillion, or $836 billion. Of that, some $28.4 billion is being spent on AIDS and HIV, for both domestic and global activities combined.

Compared to where we were in 1987, that’s a huge leap. And yet: That’s a mere .034% of the health budget and .0075% of the overall federal budget.

Today, the reports that are released each year tout the fact that the annual rate of new HIV infections in the U.S. is relatively stable, as opposed to increasing each year. This is regarded as the good news. It is good news, but that number isn’t a reason to celebrate when you examine the historical trajectory either. Some 50,000 Americans become newly infected each year. That stable annual rate is bigger than the total number of AIDS cases reported in this country by the end of 1987.

Here is a fact that’s neither good news nor bad news, and after 31 years, it’s not even news at all: We still have a long road and a lot of work to do.

Sources: PBS Frontline; federal budget spending data from usgovernmentspending.com, 1987 and 2012; AIDS.gov; AIDS/HIV data from The Henry J. Kaiser Family Foundation.

Reasons to Ride, Reason #3 of ??: In Memory of Curtis Wheeler (1950–2003)

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…the ability to create something sometimes is a medicine in itself.—Curtis Wheeler

I know Curtis Wheeler, an African-American artist, through my brother Jacob, who spent three years, from 2000 to 2003, making a documentary short film about Curtis and his life. The film follows the final three years of Curtis’ life as he battled AIDS. When they met, Jacob was still in film school at NYU’s Tisch School of the Arts, and Curtis was then living at Rivington House, a health care facility for AIDS patients on Manhattan’s Lower East Side. They became fast friends and had known one another about a year before they decided to make a film together. Curtis’ goal at the time—and what became the goal of the film my brother made about him—was to be able to heal enough to leave Rivington and return to his home, a 17-room mansion in a historic district of Washington Heights, so that he could continue to live an independent life and to paint.

My brother Jacob Okada, who became Curtis Wheeler’s friend and made an award-winning short documentary film about the last three years of Curtis’ life.

I only met Curtis in person a handful of times, at Rivington House. What struck me about him is that he seemed to embody the ordinary and the extraordinary at the same time. The first time I met him, while I was visiting, I watched him get his hair cut—an everyday act that on the one hand is as mundane as it gets and is also oddly intimate. The scissors, the clippers, the towel, the cape draped around his neck to keep hairs from getting all over his clothes, the snippets of hair strewn in a halo on the floor around him as the hair stylist did her job. We talked about nothing and everything, him, my brother, his life as an artist. What I recall most about Curtis is that he was vibrant, philosophical, strong-willed, intelligent, colorful, and wickedly funny, all of which came through even as his physical body was deteriorating.

I also remember, with equal amounts of amusement, affection, and sadness, that he once asked me to get him a meal from one of the takeout joints down the street. Because he was sick to death of the monotony of the menu at Rivington. He was grateful for the care and kindness he received there, to be sure, but no one likes bland institutional food, and Curtis had been living there for ages, so one can hardly blame him. I went out for Curtis and brought back some Chinese; it was easy enough for me to do, so I did it—I was gone maybe 15 minutes and that was that. He thanked me, and I visited with him while he ate. It was such a small thing, this request, this favor, and yet the poignancy of it stayed with me. Perhaps because I was a near-stranger. The errand itself was easy and small and unremarkable, but the fact of his asking me said volumes. How strange our dependencies become when we are ill. How large even small acts of kindness can become. How one must rely on others, sometimes those we barely know or will never see again. How asking for help becomes something that’s necessary, likely even, nearly every day, even in those of us who are fiercely independent by nature. How the armor we usually use to hide our deepest vulnerabilities seems to fall away.

Curtis led many, many lives prior to his HIV diagnosis and the start of his illness—so many that the description of his bio almost sounded too fantastical to be real. Dancer. Teacher. Painter. World traveler—Curtis had traveled almost everywhere, through all of Europe, Russia, parts of Asia. My brother tried to describe Curtis’ love of the Italian Renaissance masters and how that showed up in his own painting to me. It wasn’t that I didn’t believe Jacob when he said it, but all the biographical facts of Curtis’ life seemed to contain some mythic element of the fantastical, the spiritual, an otherworldliness.

Michelangelo’s David, Florence, Italy. This Renaissance sculpture masterpiece is the sort of art Curtis studied and loved.

Those facts would have sounded pretty extraordinary even if Curtis hadn’t been slowly dying of AIDS when I met him. But I think their fairy-tale-like hue was amplified by how much they contrasted with his present-day life battling illness and just trying to get through the day, the week, the month. I didn’t consciously think it at the time, but those same aspects of Curtis’ experience—his extensive knowledge of European art and dance, his fierce intellect and passion for books and learning, the searching quality and curiosity that rose up out of so many of his conversations—bore no resemblance, seemingly no connection to the grim, earthbound realities of the setting in which I met him. On one level, of course I knew that HIV and AIDS happened to all sorts of people leading full, rich, interesting lives—not to one-dimensional stereotypes. And yet some part of me had trouble reconciling the exciting, mysterious past Curtis had led with the present-day one.

Curtis’ life was all those things—fantastical, unusual, spiritual—and yet on the most literal level, he had also done all the things and seen all the places my brother had said he had. His house in Washington Heights, which is where the photograph of him reproduced here was taken, teemed with books, sculpture, ornate furniture, art of all kinds. The way in which Curtis decorated the walls and floors of his 17-room home with his drawings and paintings seemed his artistic homage to all he had experienced in the world—and he had experienced a lot. It was as if he needed to create something outside himself, to heal his own spirit if not his body, something visual to show that all his past callings and journeys and memories, and his art in and of itself, were, in fact, the core of the fabric of his life and his being, as much his life as all the present-day rounds of dialysis he had to undergo, as the smokers’ room and Bingo Night at Rivington, as the Chinese takeout meal I delivered to him in a flat styrofoam container, with different depressed compartments in the tray for the rice, the main dish, the sauces, the egg roll.

Curtis Wheeler, an African-American artist battling AIDS, in his house in Washington Heights, c. early 2003. This image is a film still from director Jacob Okada’s documentary short film Curtis (2003). Image appears courtesy of Jacob Okada.

The film Curtis was completed in 2003, and the final 33+-minute cut was finished the same day Curtis died. Fortunately, my brother had shown Curtis a close-to-final cut of the film before he passed away. The film aired multiples times on PBS, and it went on to the 2004 Sundance Film Festival and received an Honorable Mention in Short Filmmaking there. For those interested in additional background about the making of the film, an interview my brother did with Asian American Film appears here.

Curtis wasn’t the first person I knew with HIV or the first I knew who died from it. Nor was he the last. But both meeting him and later, in 2003, watching my brother’s finished short film about him brought some of the stigma and loneliness of HIV and AIDS home for me in new ways. Because while the film Curtis is about AIDS, to be sure, above all else, it reflects Curtis Wheeler as a complicated, insightful, multifaceted human being. Not an anonymous HIV statistic. Or a stereotype of whatever kind—black, male, gay.

Everyone who lives with HIV has a unique story. Everyone who dies from AIDS-related causes has a unique story. These people aren’t numbers. They don’t fit neatly into one-dimensional stereotypes that the rest of us can use to distance ourselves from the disease, its reach, and its brutality. Part of Curtis’ legacy is that he got to share some of his individual story and his self, and all the corresponding vulnerabilities, before he died, and it got documented, which will extend the sharing of that story in the years to come. He was lucky in that regard, the same way that he was lucky to have discovered and explored an inner well inside himself where he could find solace and healing though creating art, and he knew it. He also recognized that many others like him who are dealing with HIV and AIDS don’t have any of that.

Having known Curtis, however briefly, and riding for him reminds me of all those things—of the therapeutic power of creative expression, of how distinctive each human set of experiences is, and at the same time, of how equally important it is to acknowledge the elements of humanity we all share.

I’m grateful to Curtis for those things. I also wish he was still here.