HIV/AIDS: Good News, Bad News, Red Fish, Blue Fish, Loveship, Courtship, Pos-Ship, AIDS-ship, Sickship, Oldship, Deadship

It’s hard to believe that it is late July already. My last post on here was in March. It has been that sort of season. Busy but erratic. Insane weather that went from unseasonably cold to sweltering almost overnight.

Me, wet and cold, but happy, on Day 1 of last year's Braking AIDS Ride, Friday, Sept. 29, 2012. Photo by Alan Barnett.

Me, wet and cold, but happy, on Day 1 of last year’s Braking AIDS Ride, Friday, Sept. 29, 2012. Photo by Alan Barnett.

In truth, though, I think I have postponed writing on this blog this season because I was struggling to figure out what I wanted to say. How my thinking about doing this 3-day, 285-mile bike-ride fundraiser and continuing to support this cause—the fight to end HIV/AIDS—in this way has evolved. This is going to be my sixth AIDS Ride, my fifth since 2008 with the Braking AIDS Ride group. I’ve ridden over 10,000 miles on a bicycle and raised almost $45,000, all in the name of supporting beneficiaries that offer crucial HIV/AIDS services. Isn’t that enough? Why am I still at it? What is the big deal about HIV? What’s changed since 1999? What’s different about the way I think about this in 2013? Why do I continue to fight this particular fight?

These questions are easy to ask, but authentic answers are elusive. I find that now that me asking for help to support this cause is no longer a novelty—just as the disease and the fight to end it are no longer new—I don’t always know what to lead with when I reach out to people about it. I am tired of HIV/AIDS, and even I am tired of doing what journalist Randy Shilts called “Talking AIDS to Death” in a 1989 Esquire article with that same title.

It's official. According to the popular wisdom, AIDS has been old news for a decade and a half. This Esquire cover hits the stands in March 1999, six months before I did my very first AIDS bike ride.

It’s official. According to the popular wisdom, AIDS has been old news for a decade and a half. This Esquire cover hit the stands in March 1999, six months before I did my very first AIDS bike ride.

What do I say to people today about AIDS, especially people I know who have heard so much of it, if not all of it, before? Where on earth do I begin? Do I lead with the good news? Everyone likes stories about progress. I, too, like stories that suggest we’re getting somewhere, that our efforts help. And we are making progress, no doubt about it. Or do I lead with the bad news? We are getting somewhere, but HIV/AIDS still affects countless people, and it remains a horrific, sometimes fatal disease, which is why we still need to keep up the work. Do I scare people to remind them that resting on our laurels and thinking the HIV/AIDS is now someone else’s problem—Africa’s problem, or Southeast Asia’s problem, or a Caribbean problem—is just about the worst thing we all can do?

Per usual, I decided to split the difference and do both. So, the good news and the bad news:

I fight this fight to end HIV/AIDS, and I ask for continued support for Housing Works from practically everyone I know year after year because HIV is old news. AIDS has now been around so long, it was considered old news even back in 1999, the year I did my very first AIDS ride, as beautifully illustrated by the March 1999 Esquire cover reproduced here.

In past years, I’ve usually set my fundraising goal at $5,000. Because AIDS is considered yesterday’s news, this year, I am doubling my efforts, and setting my fundraising goal at an ambitious $10,000.

Despite our progress, the battle against HIV/AIDS is far from over. My feeling is that one of the biggest growing challenges is reminding and in many cases, persuading people that HIV is still a big deal, a problem worthy of our time, our attention, and our financial support.

Yes, we have come a long way since the 1980s, when most people who contracted HIV died painful, ugly deaths that were both too long and too short. Too long in terms of the duration of suffering, for them and those who loved them. Too short in that the disease’s victims in those early days lasted a year or two, months, sometimes weeks. Today, in the nations where testing and treatment are affordable and readily available, the U.S. among them, HIV has become something you can live with for a very long time. That is the good news. And in contrast to 20 years ago, it is very good news.

The bad news, unfortunately, is exactly the same: that HIV has become something you can live with for a long time. The bad news is that people know that HIV is manageable, but what they have less knowledge about is what living with it entails.

Here are just a handful of reasons why complacency surrounding the fight against HIV/AIDS is so dangerous:  

The statistics that demonstrate that HIV and AIDS are still a real problem continue to go up every year, even in the United States. 34 million people worldwide live with HIV today, 1.2 million in the U.S. alone. The global death toll exceeds 25 million. There is still no cure and no vaccine.  

Since I rode my bike 285 miles last year for this same cause, some 50,000 Americans have become newly infected with HIV. That is likely to be the case next year as well. For a while now, the annual rate of new infections has become pretty stable in this country. Is this better than an infection rate that’s increasing, as it did for decades? Of course.  But it is a low bar we’re setting, too low, when we convince ourselves that an annual, new HIV infection rate equal to half the population of Flint, Michigan, is good enough.

It’s supposed to be good news, but the truth is that the annual rate of new HIV infections in the United States is equal to half the population of Flint, Michigan. That’s 50,000 new people with HIV every year, for anyone who is counting.

imageMore disturbingly, one out of five Americans does not know his or her HIV status. About 1.2 million Americans have HIV, so that’s nearly one-quarter of a million people in this country who are likely to be spreading the virus unknowingly to other people.

Many kids in the U.S. aren’t learning about HIV in school. A startling 28 states in the U.S. do not have education requirements that mandate both sex education and HIV education. Irrespective of one’s religious beliefs or politics, that lack of access to health education is simply criminal. I was in high school from 1987‒1990. I still laugh when I recall the video on safe sex that we were forced to endure; the film was called Condom Sense, it was made in 1982, and in one scene, the narrator characterized wearing a condom as being like standing in a shower fully clothed with a rain slicker and rain hat on. We joked around in class when a banana was used to demo how to put a condom on properly.

banana condom

This is how sex education was taught in the 1980s when I was in high school. Image courtesy of the National Institute of Health.

But whatever else I can say about sex education during that period of time, I can say without hesitation that an awareness of and accurate knowledge about HIV and other STDs, as well as about safe sex practices, was an inherent and probably the biggest and most important part of what we learned. Even as fearless teenagers who believed we were going to live forever, we knew it was crucial to pay attention to information about HIV—because if we didn’t learn it, and understand it, and take it to heart by practicing safe sex when we became sexually active, it might kill us.

New HIV infections are highly concentrated in people between the ages of 13 and 24, an age group that is less likely to get tested and treated, possibly because those young Americans are too young to remember the days when HIV was a death sentence or—see previous paragraph—because they don’t have accurate knowledge about how you get HIV, how you prevent it, how you get tested for it, how you treat it, and how serious it is. These Centers for Disease Control stats make alarm bells go off in my head: Only 33% of Americans between age 17 and 24 were tested for HIV in 2012, and a scant 13% of high school students were tested for HIV in 2011. As a result, half of the Americans under the age of 24 do not know their HIV status.

A lot of people think HIV isn’t a big deal anymore. They’re wrong. HIV can now be manageable. That doesn’t mean it’s no longer a major health threat. HIV is not easy to live with and treat. Even with early diagnosis and proper treatment, managing it doesn’t mean you won’t get sick or suffer, and it doesn’t mean you won’t die. Jay Varma, representative of the NYC Department of Health and Mental Hygiene, summed it up best in a recent article on Bloomberg.com: “Even when someone with HIV is controlling it through medications, his or her immune system will never be fully functional.”    

I hate having to type that last paragraph. I have more friends than I can count who have HIV. Many of them have lived with it for years. I’m glad to say many of them are healthy. They are stoic and optimistic about how they approach the disease. They are also brave. But they don’t just pop a pill that’s as benign as an Advil or a Vitamin C and call it a day. I plan to write another post that’s more about this aspect of the cause—because it’s worthy of that time and space.

Kyle Spidle, fellow rider and a PosPed (an HIV-positive rider), giving crew member Amy Hemphill a kiss for helping him fix a flat. Kyle was the first victim of the meningitis outbreak that began last year. He died a week before last year's Braking AIDS Ride. He was 32 years old.

Kyle Spidle, fellow rider and a PosPed (an HIV-positive rider), giving crew member Amy Hemphill a kiss for helping him fix a flat. Kyle was the first victim of the meningitis outbreak that began last year. He died a week before last year’s Braking AIDS Ride. He was 32 years old.

For now, I will leave you with this story: Last fall, a week before I traveled to Boston for the beginning of Braking AIDS Ride 2012, I got a message that my friend and fellow rider Kyle Spidle, who had been living with HIV since 2008, had passed away in his sleep. On Wednesday night, September 19, he went to bed early because he had felt slightly flu-ish. He never woke up. We didn’t know it at the time, but Kyle was the first victim to the current bacterial meningitis outbreak. That outbreak has since been widely reported. The part that tended to be under-reported is that the first victims of the meningitis outbreak were all HIV positive. HIV put them at greater risk across the board—of contracting meningitis, of having a more severe infection if they contracted it, and at greater risk of dying from a meningitis infection. Kyle was 32 years old.

Kyle, lugging for the camera, during the ride in September 2009. Don't let the smile and the hot bod fool you. He wasn't just a pretty face, and everyone who knew him misses him dearly.

Kyle Spidle, mugging for the camera, during the ride in September 2009. Don’t let the smile and the hot bod fool you. He wasn’t just a pretty face, and everyone who knew him misses him dearly.

As I said in my first, recent wave of solicitations to friends and family to donate to support me in the Braking AIDS Ride this September, I will ride this year in memory of Kyle and in memory of others like him. I will ride, as I do every year, in memory of Curtis and Daniel, two family friends whose deaths from AIDS in 2003 and 1987, respectively, I wrote about in previous posts on August 16, 2012, and August 29, 2012, and I will ride to support the many friends I have who are infected with HIV and for the countless others who are affected by this terrible disease.

The good news is that in the short time period since I sent out those calls for help, I’ve raised 32% of my fundraising goal of $10,000. If you’ve read this far, you already know what the bad news is.

WHERE YOU CAN DONATE TO SUPPORT ME IN BRAKING AIDS 2013:

Why, my fundraising page, of course! Donate early and donate often!

SOURCES:

Samuel Adams, “Meningitis Outbreak Spurs Effort Before Gay Pride Events,” Bloomberg.com, June 18, 2013.

Esquire AIDS Crisis issue, March 1999.

Tara Culp Ressler, “5 Things to Know in Honor of National HIV Testing Day,” June 27, 2013, Thinkprogress.org.

Randy Shilts, “Talking AIDS to Death,” Esquire, March 1989, p.123.

Red Hook, Bklyn, Post-Hurricane

It is 5:40pm on Saturday, November 3. The worst of Hurricane Sandy has been over for five days. Jen and I just got home from walking to the southern part of Red Hook in Brooklyn, where the post-storm devastation is ongoing.

We didn’t stay home during the storm. We spent the days of the hurricane with generous friends who live inland in Brooklyn, two neighborhoods away. The rear side of our apartment building faces west and is on the eastern side of Columbia Street, a narrow, two-lane street that runs parallel to the waterfront. Prior to Hurricane Irene last August, a close look at the city’s hurricane zone street maps revealed that this location places us exactly on the border of an evacuation zone. Everything north, west, and south of the west side of Columbia Street is designated as part of the mandatory hurricane evacuation area—and with good reason. It is one block from the water. The only street located west of Columbia in our little part of the neighborhood is Van Brunt Street, which runs parallel to Columbia and overlooks the commercials piers and stevedores that dot the south Brooklyn waterfront.

In the Google map I created below, our section of the neighborhood—distinct from the more gentrified Carroll Gardens because it is located west of the Brooklyn Queens Expressway, and only accessible by four overpasses and one pedestrian footbridge going over the highway—is marked in green. The dark red line marks the division between where we live and the red mandatory evac zone to the west. Our little green plot is technically the northern section of Red Hook, but because it is just north of the Brooklyn side of the Brooklyn Battery Tunnel and Hamilton Avenue, a commercial thoroughfare that runs directly underneath the BQE (Route 278 on the map), it is also cut off from the main part of Red Hook. On the map, Hamilton is denoted by the diagonal lavender line, and the primary parts of Red Hook, all part of the mandatory evac zone, are to the left of that line, marked in red.

I like maps, but I also understand them well enough to know that many of their borders are artificial; just because a map says we live, just barely, on the advantageous side of an evacuation line doesn’t guarantee a hurricane will pay any attention to that particular distinction and stay on its side of the divide. In addition, the two drains in our building courtyard are partial to flooding during thunderstorms, and we live on the first floor. That being the case, both last year during Irene and this past week during Sandy, we decided to be on the safe side and move inland because we could. We spent from Sunday to Tuesday evening safe and dry, six flights up in downtown Brooklyn. By Monday morning, long before the landfall and the worst of the storm, we were seeing photos from the southern part of Red Hook that looked like the one below, which was taken by a local resident from the southern-most end of Van Brunt, where the Fairway supermarket is located. Our building is a 15-minute walk or a three- to five-minute bike ride from where this snapshot was taken, so we had no idea what to expect when we finally returned home.

Nick Cope

A now infamous image of flooding in southern Red Hook, Brooklyn, the morning of Oct. 29, 2012, from the southern-most end of Van Brunt Street near the Fairway supermarket. Photo by Nick Cope/Green Painting

In the past three days, I’ve said, emailed, and texted—more times than I can count—that we were very lucky. Our little stretch of Columbia Street was spared. Amazingly so. No flooding. No power outage. Our minor difficulties have all been inconveniences rather than genuine, serious problems. The lack of any viable transportation to Manhattan has kept us at home. The cable has gone out periodically, our internet signal was out entirely until this afternoon, and phone service all over the neighborhood has been and remains spotty at best. All week, I sent and received email sporadically via a weak and equally spotty 3G signal. Texting has proved to be the most reliable communication channel—even though it takes three to six failed attempts before any message goes through and incoming messages often don’t show up for hours if at all.

We spent most of Wednesday at home; I don’t think we realized how stressed out we were about what might be happening to our apartment until we got back. On Thursday morning, my work laptop and I headed to Maybelle’s, the one local coffee house with both wifi and electrical outlets for three-prong computer plugs. The small place was mobbed all day and freezing, but I spent most of the day there anyway, grateful that I had anywhere to go where I could attempt to get some work done. On Friday, we were out of luck again in trying to find an online hook-up; Jen trotted off to Maybelle’s in the morning only to return a while later saying their wifi signal was kaput.

These are all good problems to be having. When we were still at our friends’ house on Tuesday morning, our friend and neighbor Andi, whose building two blocks from ours had also held up fine, relayed to us via text that everything south of Hamilton Avenue and the Brooklyn Battery Tunnel, just a five-minute walk from us, was a mess. “…Red Hook looks pretty bad,” she reported. “Power out there, bad flooding, gas/oil/chemicals on the sidewalks.” The photos that have been posting online in the days since then have confirmed that description and documented worse.

We didn’t doubt that the damage was severe. When I went to the bodega next door on Wednesday afternoon to pick up milk, the owner, Mrs. Li, asked, in her halting English, after me and Jen. As we were talking about the storm, she told me about a customer from that morning who lived on Staten Island. The winds were so strong that the woman’s brand-new outdoor fence was carried away hours before the main part of the storm hit. The surge that followed was so encompassing, boats from the marina smashed into floating cars and drifted into her yard. The flood level in her house was soon so high, she and her family had to swim out to safety.

Hearing a harrowing story like that made it all the more strange to be walking around Carroll Gardens, where everything was mostly the usual. Aside from the huge, downed trees and the shelves at local stores that are low on stock if not entirely out of certain key items—batteries, flashlights, bottled water, candles—the signs of damage and storm impact are minimal. Even on our grittier side of the highway, although the streets are quieter than usual and many of the local businesses remain closed, you wouldn’t know from appearances how truly lucky we are. The only visual signs that something is amiss are increased bicycle traffic and long lines at the grocery stores, bakeries, and restaurants that are open. The view from our bedroom window facing the street doesn’t show how close we are to staggering losses, places where people are still living under terrible, near-unimaginable conditions that show no signs of dramatically improving any time soon.

Like a lot of locals, we thought it was important, essential really, to show our gratitude for how unscathed we are by trying to offer some help to our neighbors. As Jen put it to me last night, “I was scared for us. For our home. For what could have happened to everything we own. I don’t think I could show my face in the neighborhood if we didn’t do something to try to help the people down the street.” Jen has been following the Twitter feed of the Red Hook Initiative (RHI), a local community center that offers a range of health, education, employment, and neighborhood development program. In the wake of the storm, RHI is redirecting all its efforts and resources toward hurricane recovery work, becoming a de facto focal point for relief efforts and support, so that’s where we headed. The Twitter updates have offered up useful  information about the kind of volunteer work that is available, about the kinds of supplies and help that are most needed, all in real time.

Our first stop was the Met Food on Henry Street in Carroll Gardens. On our way there, we passed by Maybelle’s again. Crystal, a student who we know because she’s worked part-time at various cafes in the neighborhood, was sitting on the bench out front having a cigarette, so we stopped to chat and ask her how she was. “Your expression looked so serious,” remarked Jen, “I almost didn’t recognize you.” Crystal works in and around Carroll Gardens, and her mom lives there, but Crystal herself lives with her aunt and uncle on Staten Island. She’s spent the past few days shuttling between her mom’s and trying to repair the severe damage back in her own neighborhood, where many people have lost their homes altogether. Those who haven’t are still waist deep in flood water, with no running water or heat, and the only people with electricity are those with generators. Crystal described trying to drive through there at night to pick up salvageable clothes and supplies. “It’s pitch black, no light at all except from the headlights of my car. It looks like the zombie apocalypse.” She told us she’s been pretty freaked out, and today was the first day she could even talk about it without choking up. But she also noted that nearly everyone has been resilient and helpful. “We wouldn’t have any power at all at my house if our neighbors didn’t have a generator that they loaned to us. I bought a bunch of blow-up air mattresses, and I’m telling friends they can crash at my house for as long as they need to. We’re all doing what we can and what we gotta do. Last night,” she said, pausing to grin in a mixture of what looked like self-consciousness, shyness, and pride, “we made twenty pounds of pasta and then spent all night serving dinner to anyone who needed to eat.”

After hearing that, suddenly our trip that afternoon became more real, more urgent, more sober. Jen had a list of supplies that were atop the RHI want list for the afternoon, and first at Met Food on Henry Street and then at Winn Discount on Court Street, we filled our granny cart with as much as we could find. It sounded like a lot of people were already bringing in bottled water and food that won’t spoil easily and doesn’t require cooking, so we focused on the other miscellaneous things one wouldn’t necessarily think about under normal circumstances: dry dog and cat food, maxi pads, diapers, mops, replacement mop heads, rubber gloves, sponges, bleach and other cleaning supplies, industrial-strength garbage bags, buckets, batteries, flashlights, candles, matches.

RHI is located on the corner of Hicks and 9th Streets in the heart of Red Hook. It’s mere blocks away from the NYCHA Red Hook Houses, the biggest public housing project in Brooklyn, with between 5,000 and 6,000 residents, and also among the poorest and most dangerous and crime-ridden. Because Met Food and Winn Discount, both located in Carroll Gardens east and north of our apartment, were the best places to stop and get cleaning supplies, we took a more indirect route to get to RHI than we might have, had we gone straight from home. After leaving Winn Discount, we walked south on Court Street, Jen pushing the heavy shopping cart, and then we took a right at 9th Street, crossed the treacherous, heavily trafficked Hamilton Avenue, and continued heading back west down 9th until we reached Hicks Street. We passed by the Red Hook shelter on the way, and the lines of people waiting outside to see if they could get a place to stay for the night were four and five people deep and extended all the way down the block in both directions.

We hadn’t been to RHI before, but we didn’t have to look at the street signs to find it. The crowds of people, the flash of emergency lights from police cars, and the cluster of double- and triple-parked vehicles told us. Volunteers were unloading cars and vans full of aluminum trays of food, pallets of water and paper towels, blankets, and clothing. Inside, through the windows, I could see an elaborate assembly line set up for feeding people, and the line of hungry locals waiting to get a meal snaked out the door. Supplies were in such high demand, most weren’t even making it into the facility. They were being organized by category by the wall outside, so people could drop donations off quickly and others could easily locate and pick up what they needed. Everyone was carrying something, bags laden with food, shopping carts, backpacks, and they were all moving quickly, trying to make it to safety, wherever that might be, before the sun went down and the neighborhood became pitch-black again.

It was a sobering sight. A far cry from Maybelle’s and Carroll Gardens, where some of the local kids had been able to go trick-or-treating on Halloween. Once our cart was empty, Jen and I kept walking west on 9th Street, where two blocks later, another clog of people and city buses being used to transport resources was clustered in front of a Catholic church that was also offering recovery assistance. We didn’t say anything to one another as we walked along. There wasn’t anything to say. The air was clammy and cold. The sky looked strange, sunny and piercingly blue in some stretches, and in others, swollen and claustrophobic, heavy with menacing, low-hanging clouds shaped like giant tunnels. We took a quick right onto Columbia Street, and a left at Verona Street, which runs along the northern edge of Coffey Park. Earlier in the day, people had been distributing food and water there, but now that nightfall was only a few hours away, the park was empty, littered with fluttering, yellow police tape and massive downed trees. We stayed on Verona until we hit Van Brunt, which is the main drag and which offers the quickest access back north, across Hamilton Avenue and to our side of the neighborhood. It’s also the primary part of the regular route we take on weekends when we walk Sadie down to Louis Valentino Pier, a park beautiful park overlooking the harbor, with the Statue of Liberty in the distance.

I’m not sure what we expected as we walked up Van Brunt. Because we had accomplished our small mission, because five full days had passed since the worst of the hurricane had subsided, because that particular spot is only four blocks south of Hamilton Avenue, some six or seven from my house, some part of me must have thought, hoped really, that what we were to encounter there would be an improvement, well on its way to being back to normal. I had heard about and anticipated the waterlogged debris and garbage sagging in clumps on street corners and on curbs, pools of gas and oil on the sidewalks. I didn’t expect the steady stream of runoff water tricking along the street gutters, not from street flooding, but rather from all the water still being pumped or carried out of the surrounding houses and properties. I didn’t expect to find our friend Danielle, surveying her demolished front yard, sorting through her waterlogged, mostly ruined belongings, fielding calls from her kids, who have been spending their nights at friends’ houses.

We don’t hang out socially with Danielle and her husband, but we have known them and been their clients and neighbors for many years. They own the local dog and cat daycare place, just a block from our house; they do dog-walks, too, and they have cared for our dog Sadie for over a decade. Their business space, located on our side of the highway, was, like our building, spared: no flooding, all the animals were safe, and they were open for business again by Wednesday. Because Jen and I didn’t know whether we would or wouldn’t be able to go into work each day this week, we’d exchanged emails with Danielle each day, first with her letting us know when everything was fine and up and running at her end and then confirming whether we needed to have Sadie walked. Those exchanges were so business-focused, and so stoic, we had no idea until we walked by this afternoon that Danielle’s house, located just five minutes away from our house, had been pummeled by the storm.

That Danielle and her family still have no power isn’t surprising. No one on that side of the highway does right now. But the only source of heat is a makeshift wood fire she and her husband built on a barbecue grill. When we walked by, the grill was positioned at the foot of their front steps, and an elderly person we didn’t recognize, presumably a neighbor, was sitting on the stoop in front of the grill to keep warm. Most startling of all was the noise, the buzzing and rattling of an enormous electric pump, with one hose leading into the basement to siphon the water out and another pipe extending out the front yard, which was still belching flood water out of the house and into the street. Danielle’s house is two stories, plus a basement. The hurricane water surge filled her entire basement, floor to ceiling, and the first floor where they live was filled with nearly two feet of water. A fog of confusion drifted over Danielle’s face as she tried to describe the peculiar flood path of ordinary household items. The heavy, plastic container full of dog kibble that floated and drifted into another room. Her Christmas ornaments that ended up on the lawn, where she later caught a stranger looting through her soggy stuff, rooting through holiday decorations to steal the ones she wanted.

We tried to offer her help if she needs it in the coming weeks. Clean-up help, baby-sitting, somewhere for her kids to crash, a place to do laundry, an hour or two away from the mess to have a drink, take a nap, soak in a warm bath. For the moment, all we did was take in her pet love bird. The bird had been moved from Danielle’s house to the business space for safety reasons, but Danielle noted that the bird was probably unhappy there, from lack of attention and an overdose of barking and whining from the menagerie of other animals. So we picked up Izzy on our way home, and she’s chirping away in our office as I type this.

Aside from the Google map I annotated to give readers unfamiliar with the area a sense of its geography and scale, and the already widely posted photo of Red Hook flooding that went viral on Monday morning, I intentionally decided not to post any other images of the wreckage or the poignant, unsettling relief efforts. A ton of grim photos online mirror elements of the narrative I’ve tried to relay here—and these startling images have their place in helping to show how dire things are in certain parts of the city and how  much help is needed and where—but I am not a neutral journalist, conveying news objectively. I decided not to re-post those pictures for the same reason I didn’t take any photographs when I was walking through the neighborhood myself. It’s the same reason that it gave me the willies to see how visitors flocked to stare at and take their pictures in front of the 9/11 site while it was still a smoldering crater of dust and debris in the ground. Because the act of doing so, as someone who isn’t either a resident or a journalist, would have felt distancing, dehumanizing, and voyeuristic, like I’m some sort of disaster tourist coming to visit other people’s misfortune and suffering and observe it from afar like it’s a safari or an exotic Survivor-esque museum. It’s not a diorama. It’s not a made-for-TV disaster film. It’s not yet history. It’s real, daily life for flesh-and-blood people, many of whom don’t know when or where they’ll get their next warm, home-cooked meal or if they’ll have a dry, safe, heated place to sleep tomorrow night.

Likewise, I am not writing about any of this because of a lurid fascination with catastrophe sites. Or because it makes a good dramatic story. Or because I think it’s newsworthy that we spent a few hours helping out in our own neighborhood. In fact, none of this is about me or Jen or our family, except that it’s no more than mere chance that we’re fine, and Danielle and her family and lots of other neighbors are not.

This is why I’m writing: The hurricane will soon become old news in the media, especially once all the subways are up and running again, and most people, myself included, are able to get to work on Monday. It won’t be old news for Danielle or my other neighbors on that side of the neighbor hood. Those damaged sections of Red Hook may not have power again until at least November 11. No running water, no electricity, no heat, virtually no transportation, no fuel, and uneven, limited access to food, potable water, and supplies. The lack of power also means that all recovery work needs to take place during daylight hours, even as the days are getting shorter. I’m certain other similarly devastated areas are facing comparable challenges.

I am writing about all this because based only on the little I’ve seen, and I have seen very little of the worst pieces of what’s happening out there, I can say firsthand that the storm damage is deep, wide-ranging, and long-term. Help is needed now, a lot of it, and it’s going to continue to be need for weeks and months to come. And it’s pretty easy for most of us to help because there are a ton of places where people can do whatever is within their means, as well as a range of ways to contribute.

Please: If you are able, go find a way to help that works for you and do something. If you have time to volunteer, go spend a few hours helping with clean-up, or shelter efforts, or distributing food, water, and supplies at one of the relief centers. If you don’t have time, but have material goods you can either donate, or purchase and then donate, go online and look up what’s needed where, and give some clothing, food, water, cleaning supplies, toiletries, etc. If you’re unable to give time or donate supplies, and/or you’re too geographically removed from any of the disaster sites to be able to help physically, donating money is an equally helpful option. Every little bit counts. The point is that we all should do something if we can—because we can. At the end of this post, I’ve included some links to a handful of place where you can start exploring help options, but a simple Google search and scanning of news articles about the storm aftermath will yield more as well.

In addition, please expand the support network by re-posting information and links to available volunteer and donation options anywhere and everywhere: Facebook, Twitter, email.

Ways You Can Help

Because the national efforts via government agencies and large relief organizations like the Red Cross are already widely publicized in the press, and because they are farther removed from the actual sites needing help and it may take them longer to get their resources to where they need to be, the initiatives listed below focus more on localized, on-the-ground efforts:

Red Hook Initiative: http://www.rhicenter.org/.

Red Hook NYC Recovers: https://redhook.recovers.org/, an online resource coordinated by the folks at OWS and community organizations on the ground that was built to enable people to both offer and request assistance. Sites for donations and volunteering have been set up in multiple locations, some in Red Hook, but also in other areas like Sunset Park, the Rockaways, and Staten Island.

CityMeals-on-wheels: https://www.citymeals.org/, an organization whose mission is devoted to getting food and human company to home-bound elderly New Yorkers. This is one of the most vulnerable and least visible populations affected by the hurricane, especially elderly people living in high-rises that have lost functional elevators and power. Here is a great overview on the emergency services CityMeals is providing: a release on the CityMeals website about their post-hurricane response.

For tomorrow, Sunday, November 4. NYC Marathon of Relief Efforts (NYC MORE 2012): www.nycmore2012.org, a group of runners and volunteers who have turned the cancellation of the NYC Marathon into an all-day volunteer opportunity, with options to volunteer in the Rockaways, Staten Island, and Coney Island. Also includes ways to donate goods and funds.

Occupy Sandy Relief: http://interoccupy.net/occupysandy/, another online resource built by a coalition of people Occupy Wall Street, 350.org, recovers.org and interoccupy.net. Its offering are similar to Red Hook NYC Recovers, but its information is on facilities serving other affected areas, not just Red Hook. Includes volunteer and drop-off locations in Chinatown, the Lower East Side, Rockaway, Coney Island; drop-off-only locations in numerous locations in Manhattan, Queens, and Brooklyn; and a portal to help in New Jersey.

Braking the Cycle Ride Postscript 1: The Blue Streak Hits Mile 9,000 and Keeps On Going

It’s been almost three weeks since I completed Braking the Cycle 2012. Long enough for me to take my bike, The Blue Streak—her gears crunchy with grime and dirt, brake pads worn to the nubs after riding through rain for more than 100 miles, tires thinned and pocked with tears from flats—to the bike shop for a much-needed tune-up, new brakes, new tires. Long enough for a dozen more donations to come in. Long enough for the total mileage logged on The Blue Streak since I bought the bike to have exceeded 9,000 miles, a glorious bench mark I anticipated in my first blog post. But not long enough for me to write a postscript that will do my experience of the three days of the ride itself justice. This isn’t going to be that post.

Lost in the backwoods of hilly Connecticut, near the end of Day 2, after nearly 200 miles of riding. The thought bubble above my head would read, “Thank God, an oasis.” (On Braking the Cycle, a rest stop is called an oasis.) You can’t tell from my smile here, but I hate Gatorade. Photo by Alan Barnett Photography.

What I will say now is that the three-day ride was a microcosm of my whole, erratic summer: I rode as hard and fast as I ever have. I crawled uphill. I felt fantastic. I felt half-dead with exhaustion and everything hurt. I wept while pedaling. I sometimes had no idea if I could go on. I rode at the front of the pack. I caught a brief glimpse of the caboose, the two riders designated to be the tail end of the ride, chugging along behind everyone else. I was freezing and wet. I got windburn and was overheated. I discovered again that I am stronger and more tenacious than I realized—and that continues to surprise me. I forgot why riding 300 miles on a bicycle felt like a good idea. I forgot why doing anything besides riding my bicycle seemed like a good idea. I thought of every person I know, living or dead, who is affected by HIV. I thought of the recent wave of people I know who are my age and who have either died unexpectedly during the past year or who are braving and battling awful, progressive illnesses of all kinds, none of them HIV-related. I contemplated my mortality. I sang dumb pop songs, admired the foliage, inhaled the smell of autumn, and thought of nothing deep or nothing at all. I rode alone. I met and reconnected with old friends on the road. I made new friends on the road. I drank too much Gatorade. I drank too little Gatorade. I ate bananas, bananas, bananas. I found laughter in unexpected places. I was moved to tears by strangers. I was met with affection and cheerleading and applause at least once an hour, for just existing and showing up. I trusted the training. I doubted myself. I believed in myself. If one element was constant, it was only this: I kept going.

The more detailed blog-post summary of our civil rights march on two wheels, spanning three days  across four states, will take me a little while longer to get around to writing, but in the interim I wanted to share some details about what happened when the ride was over because it deserves its own entry.

The check for nearly $221,000 that we presented to Housing Works at closing ceremonies, Sunday, September 30, 2012, 5:30pm. The actual final total will be higher, as riders and crew continue to fundraise until the end of October. Photo courtesy of Rich Biletta.

The first item of note is a series of numbers I’m joyful to share. By virtue of the subject matter of AIDS and HIV, most of the statistics I’ve referenced these past months have been unsettling, sad, infuriating. It’s therefore with a joyful heart that I can type this new figure for the books: As Sunday, September 30, 5:30pm, Braking the Cycle 2012 raised nearly $221,000 for Housing Works in the fight against HIV, AIDS, and homelessness. That amount has also been climbing rapidly in the weeks since, as post-ride donations continue to come in.

As of this writing, thanks to the financial support of the 134 generous souls who sponsored my personal ride efforts this year, and whose names are listed at the end of this post by way of acknowledgment and with all my gratitude, my portion of that handsome $221K+ sum totals $9,710. For those of you who work in sales or who like to see such totals framed against concrete, forecasting goals, $9,710 equals 129.5% of my final target goal of $7,500. I say “final target goal” because my original goal when I began fundraising in early July was $5,000. In mid-August, when the going was slow, I even had a panic-stricken week that I wouldn’t reach the $5K, no matter how many times I hit “refresh” on my First Giving website page every few hours. (O ye of little faith, Mika!) I was thrilled when I hit that $5,000 goal and was able to raise the target by 20%; I had no idea that I would end up raising it again twice more after that. So, needless to say, to have achieved a sum that is 194% of my original target goal has me astonished and approaching speechlessness.

The donations I received ranged in size from $20 to $725, and every bit counted and helped. These acts of kindness and support represent a diverse array of humanity residing in three different countries, including 18 states across the U.S. Contributions came from my closest friends and family, from colleagues, and even from people I’ve never laid eyes on. To each and every one of you who supported me throughout this challenge, and what proved to be a particularly difficult season, I could not have done it without you. Thank you again and again. You inspire me with your encouragement and with the expansiveness of your hearts. (And yes yes yes, if you’re reading this and thinking, “Damn, I meant to donate…” or “Wouldn’t $10,000 be a much nicer, rounder number as a total than $9,710…” or “To hell with that Fall Clearance sale, I think I’ll donate to Braking the Cycle and Housing Works a second time…”, the donation link is still up and running, and you can still kick in for another 7 days or so. For those of you who have had just about enough of my relentless BTC pitches and reminders, I know it may seem like the 15th Cher Farewell Tour—never quite over—but this really is last call for BTC 2012.) An additional thanks goes out to those who were unable to donate this year, but who have been continual cheerleaders and sources of love, inspiration, and encouragement, and who have expressed faith in me even when I didn’t have much in myself. You know who you are, and your generosity of spirit has kept me going all these months and all through the ride as well.

The second thing I’d like to share is a recap of the ride’s closing ceremonies, which took place at 5pm on Sunday, September 30, in front of Cylar House, a Housing Works facility on 9th Street near Avenue D, with the victory party following right afterward inside the building. Over the course of that afternoon, all the riders finished the last miles cycling through the Bronx and down the east side of Manhattan, to a holding area three blocks from Cylar House where we were gathered so all 90 or so of us we could ride to the ceremonies together and arrive as one big group, followed by the amazing volunteer crew.

Me, with speedy BTC rider Glenn Hammerson, gleeful after finishing the main ride route and arriving in the holding area three blocks from closing ceremonies, Sunday, September 30, around 4PM. Photo by Alan Barnett Photography.

Braking the Cycle riders gathering together in the holding area on East 12th Street, three blocks from Housing Works’ Cylar House, where closing ceremonies took place. This way, we get to ride in all together. Photo courtesy of Joseph Miceli-Magnone.

When I rolled in to Holding, I was relieved, thrilled, and excited on the one hand, but I also was nervous. About a week and a half earlier, rider coach Blake Strasser had emailed me to ask me if I would be one of the speakers during the ceremony. (The other speakers were Charles King, Housing Works President and CEO and BTC Rider #2;  Eric Epstein, President of Global Impact, which has produced the Braking the Cycle ride since its inception a decade ago, and fellow BTC rider CB Kirby. Amazing jazz vocalist Thos Shipley also sang.) My first reaction to Blake’s request was to blush because I was flattered. My second reaction was, “You couldn’t get a gorgeous, articulate gay man who looks fresh as a daisy after cycling 300 miles to do it?” My third reaction was, “What? Margaret Cho wasn’t available?” My fourth reaction was abject terror and “?!*&#@.” My fifth reaction was to remember that at the closing ceremonies of my three previous Braking the Cycle rides, I was so exhausted, I could barely recall my own name. Those reactions took less than 30 seconds collectively, and then I wrote a reply email to Blake saying I’d do whatever she wanted, happily, and if speaking at closing was it, I’d be honored and privileged to do it.

Me with gorgeous Colby Smith, an incredible athlete (he did his first Ironman last month), in the holding area, post-ride, right before closing ceremonies. Yes, he always looks this good after riding 300 miles, and this was the kind of BTC runway model I was picturing as I contemplated who would make for a better closing ceremonies speaker than I. Colby is also a funny, smart, kind human being. Who *is* this guy? Photo courtesy of Colby Smith.

Over the next week, during which I did my last training ride and massive amounts of laundry to prep for the ride, I had just enough time for the reality of what I’d committed to doing to sink in. I had done presentations, lectures, discussions, speeches for groups of all sizes in all sorts of contexts before, but this one had me nervous. I’m never at my best when I’m sleep-deprived, and I also knew the moment would be too emotional for me to be able to wing it. I also wanted to try to say something that would resonate with all the audiences who might be there—the riders and crew, also exhausted and elated; all their families and friends, including many people who had donated to the ride; Housing Works staff; and Housing Works clients, past and present—something that wasn’t canned. I spent a week thinking about it, and the week of the ride, I drafted it on Tuesday night, I had Jen read it and edit it on Wednesday, I sent the mostly final version to Blake on Thursday, the day we drove up to Boston for ride orientation, and I practiced it a few times during the lulls that day. Thursday night, I gave a spare copy to Jen to hang onto as a back-up, and I folded my copy into a Ziplock bag to protect it. That plastic bag stayed with my baggage for my first two days (and 200 miles) of riding, and then went into my cycling jersey pocket at 4am on Sunday morning before I peeled out of Bridgeport, Connecticut, with my fellow riders at 6:30. And with me it stayed for 85+ miles until we arrived at Housing Works in the East Village.

The 85 or so miles of riding that day were challenging enough to keep my mind off the speech. But my anxiety came back in a rush during that extended period of hanging around in the holding area, hugging other riders as they arrived, drinking coffee to wake and warm myself up, taking bad candid pictures with ultra-photogenic, attractive people, texting friends who had left messages. I would momentarily forget about it while congratulating another rider, and then some part of me would seize up with the memory that I was going to have to Pay Attention and make sense. Dear God, I had to talk? In front of other people? About something that mattered? What had I been thinking?

Woot woot! Me on Day 3 in New York City, finishing the official ride route as I pulled into the holding area on East 12th Street. My nerves about having to talk at closing ceremonies kicked in about 15 minutes after this was taken. Photo by Alan Barnett Photography.

I must have been jacked up enough with nerves that what followed after I gave the speech is even more of an adrenaline blur than the ceremonies of previous BTC rides. And possibly because this was my fourth Braking the Cycle ride and no longer the novelty that it once was to those who know me, I was amazed by all the people I knew who showed up to greet us and me, how warm they were, how touched I was to see their smiling faces, to get a hug from each of them. The people who are the biggest, most personal reasons I do this ride were standing right up front. One close friend and training buddy brought me an entire box of cupcakes. Another had driven up to East Lyme, Connecticut, to cheer me, and all of us, up the dreaded Mount Archer on Day 2 of the ride, and he was there again at closing ceremonies, cheering and helping with bike check-in and storage. Dear friends who were previous BTC riders and crew were there, too, whooping and hooting. My parents came and surprised me by bringing my brother, who lives out of town. A number of friends surprised me, too. One who I wish I saw more often came, and when I said, “I had no idea you’d come,” he smiled sweetly and said, “Of course I came.” My oldest childhood friend didn’t tell me she was coming at all, and then surprised me by showing up. Two of my closest friends from work came; they are each far more than what we usually deem as work friends—to me they are simply friends in the truest sense, and the work link is secondary and largely incidental—and yet because office-based connections come with their own peculiar social oddities, formalities, and awkwardness, I was especially surprised and moved to see them.

With fellow riders (Chad Woodard and  Matt Martin to my left, Rodney Newby to my right) on Avenue D, about to turn the corner onto East 9th Street where a big crowd of applauding friends, family, and other supporters awaited us. It is a mystery what I might have swallowed to produce the beautiful expression on my face. Photo courtesy of Roger Lovejoy.

But when we first rode down East 9th Street, I didn’t see anyone I knew well. All I saw  was a massive crowd of people, which in that initial moment, moved me instead of scaring me. It had been threatening to rain all afternoon—we had been doused by a brief shower when we cycled through Harlem earlier—it was chilly, and yet these loyal, tender-hearted people were standing, waiting, cheering, for us. I had been told to position myself near the stage, and when I got there, I had barely dismounted when I noticed several middle-aged African-American women approaching me and the riders immediately around me. We didn’t know them. They were strangers, and yet the second they saw us, their faces lit up and brimmed with emotion, and they moved toward us with outstretched arms. Without even consciously thinking it, I understood they were Housing Works clients. The one nearest me hugged my shoulder, kissed my cheek, and over the din of the crowd’s applause and cheering, she murmured in my ear what I am certain the other women were saying to the riders they were embracing: “Thank you. Thank you so much.” They didn’t have to explain further. It was in their voices. It was evident in the way a stranger wrapped herself around me without hesitation.

One of the women who first greeted all the Braking the Cycle riders as we arrived at closing ceremonies. I believe this was taken at some point during my brief speech a few minutes later. Photo by Alan Barnett Photography.

With that gratitude ringing in my ear, my heart swelled. As for my anxieties, they didn’t disappear; they just ceased to matter. The energy from everyone there was what was thrumming around me and in me when Eric made his introductions and I heard him call my name to prompt me to come up to the stage. I took in that none of the stage set-up was great. The sound system was iffy. The mic didn’t have a mic stand, so I had to hold the mic with one hand while I propped the pages of my speech up against the podium with the other. My hair, ever frizzy in rainy weather, kept whipping about and getting caught on the mic. The wind picked up and flapped at the pages of my speech. None of it mattered. I took a deep breath, I talked for a few minutes, and the crowd of people in front of me listened, and clapped, and listened some more. People clapped afterward and said nice things. We went to the victory party, where I hugged and chatted with some friends more; I ate a cupcake and drank the best beer I drink all year; and Jen and I cabbed it home with my bike in tow. Since then, some folks have expressed curiosity about the speech, so I have pasted the written manuscript below. Minus, of course, the spontaneous ad-libbing I did onstage, this is what I said:

Me, talking at Braking the Cycle’s closing ceremonies, Sunday, September 30, around 5:30 PM, with rain looming but thankfully not materializing. In front of Housing Works’ Cylar House facility, 9th Street and Avenue D, New York City. If I sort of give off the air that I’ve just gotten off my bike after riding 300 miles, it’s because I have. Photo courtesy of Kate Asson.

Braking the Cycle Closing Ceremonies Speech
Cylar House, Housing Works, New York City, September 30, 2012

There’s a homeless woman who has frequented my Brooklyn neighborhood for all 12 of the years I’ve lived there. My partner Jennifer and I call her The Quarter Lady because when she asks for help, she always asks for a quarter. She tends to make people uncomfortable—because while it’s not clear what’s wrong with her, it’s clear she isn’t all there. The only things she says that are easy to make out are “Miss, you gotta quarter?” and “thank you.” She can be a little scary, possibly unstable, suffering from withdrawal, physically ill, mentally ill—maybe all those things.

For years, I gave her money when I saw her. When months went by and I didn’t see her, I’d worry a little, and hope nothing terrible had happened to her. When I saw her again, I’d be relieved and vaguely deflated—glad to see her, but sad that she was in the same place. Time seemed to stand still with the Quarter Lady. Everything always the same.

Then one day, something changed. Instead of being on her usual corner, she was on a side street, sitting on the stoop of a brownstone. She may have asked me for a quarter. I said something to her about the weather. And in the very next moment, the Quarter Lady suddenly became grounded. Her lucidity, which I’d never seen before, was visible. The first thing she said, I’d heard from her many times—which was “thank you.” Then she gave me a penetrating, compassionate stare that felt like she had peered in at the very core of my self and seen the entirety of my soul, my strengths, my flaws, all of it. And she said, “Someday I hope I’ll be able to help you too.”

I’m not sure what I said. Possibly thank you, and that I’d like that. I was on the verge of tears and I didn’t know why. We waved goodbye, and the next time we were back to our usual exchange about quarters.

I had so many obvious advantages, necessities, and privileges—a home, a job with a salary, my health, health insurance, a loving partner, family and friends. But inside, I was having a hard time that year. I was depressed about various aspects of my life, and I felt lost a lot of the time. And that morning, a virtual stranger who wasn’t even all there most of the time had seen me for exactly who and where I was in that moment, recognized I was in pain, and said something kind.

I was 9 years old when the first cases of AIDS were reported.

I was 10 or 11 when they finally figured out that sex was the major mode of HIV transmission.  

I was 15 when the first person I knew who was HIV+ got sick and then quickly died of AIDS, a close friend of my mom’s. He wasn’t out as a gay man, he wasn’t out with his HIV status. When he died, his obit said he died of cancer. That was in 1987.

I was 31 when my brother’s friend Curtis died of AIDS. Curtis was out and outspoken about everything—about his love for art, about being gay, about being HIV+ and battling AIDS. Eventually his body lost the battle, and he died in 2003.

I’ll be 40 this year. Like so many people here, probably everyone here, AIDS has been a shadow part of my life for over 30 years. I know more people who have died from it. I know people who found out they were HIV positive last year. I also know more people who are living with HIV than I can possibly name here. The good news about that last category is that they are the lucky ones: They know that they have it, they treat it, and they manage it. They’re lucky to have survived what so many of us call the years without hope before 1995 when antiretrovirals got better and became more available, and that they had access to the right services and resources.

Without movement and change, healing isn’t possible. I don’t know whether The Quarter Lady has HIV or any other illness. I know that she moved me because for a few brief minutes, she reminded me that so long as we’re alive, we all have the capacity to change and in turn, heal ourselves and one another—no matter how difficult our circumstances, no matter how unlikely it may seem, no matter how hard the journey to make that shift. It doesn’t matter whether the Quarter Lady ever helps me in some material, visible way. She helped me by imagining a different future in which she was helping me because I was in need rather than the other way around.

Since its founding, Housing Works has advocated for people at the margins who have been given up for lost, who have been considered to be beyond help, beyond change, beyond healing, long before they die a physical death from AIDS. Housing Works has gone where other groups wouldn’t go—they acknowledge the connection between poverty, homelessness, AIDS, HIV testing, treatment, addiction, IV drug use; they recognize them as interrelated; and they create a space without judgment where second chances are authentic. They imagine other ways things might work, and they make change. In making change, they facilitate healing. It’s no accident that the people who start off as clients come back as activists and advocates and staff members when they’re back on their own two feet.

People ask me all the time why I keep doing this ride. I do it because I have friends who live with HIV and because I’m all too aware of the fact that it could easily have been me. For me this ride has functioned a lot like Housing Works has for many people. Being part of this ride has helped me challenge myself and go far beyond what I thought I could do in the world; it helps me find change within myself. I ride because the people I’ve met along the way inspire me. They show up even when it looks like there isn’t any more progress that can be made. I didn’t know until pretty recently how much healing the experience of being part of this would offer me.

By being here today, whether you’re a rider, a crew member, a Housing Works client or staffer, or one of the many, many kind people here who support this cause and this community—with time, with money, with compassion—you’re a part of that healing process, too. I know for a fact that your engagement with this community, with this issue, has been source of healing for someone else, probably someone else who’s here today. And until the final end to this terrible pandemic: I hope that being part of this fight helps you find a measure of healing as well. Thank you.

Mika’s Braking the Cycle 2012 Rock Stars

*= donor to previous Braking the Cycle AIDS ride(s)

  • Anonymous (1, 2*, 3, 4*, 5, 6, 7*, 8*, 9*, 10*, 11*, 12*, 13, 14*, 15, 16*)
  • Beth Ammerman*
  • James Anderson & Suzy Turner*
  • Jennifer Anderson*
  • Renee Anderson*
  • Chris & Mel*
  • Catherine Angiel & Team
  • Janis & Dave*
  • Leah Bassoff*
  • Charlie Baxter*
  • Jon Bierman*
  • William Bish*
  • Penina
  • Buddha Tara*
  • Meghan Campbell
  • Steph & Bill Carpenter*
  • Lynne Carstarphen
  • Danielle Christensen
  • Jane & Tony*
  • Clare Cashen
  • David Chodoff
  • Terry Christopher
  • Marcia Cohen*
  • Barbara Conrey*
  • Katie Crouch
  • Kevin Colleary
  • Susan Conceicao*
  • Barbara Conrey*
  • Rich D’Amico & Mike Meyerowitz
  • Carol Diuguid
  • Annie & Jon*
  • Carey
  • Timothy “San Diego Cupcake” Fitzpatrick
  • Ray Flavion*
  • Suzie & Bernadette
  • Kory Floyd
  • The Food Healer*
  • Kerri Fox
  • Svenja & David*
  • Michael Gillespie*
  • Christina Gimlin
  • Dawn Groundwater*
  • Amanda Guinzberg *
  • Myles
  • Scott H.
  • Karen Henry*
  • Jess Holmes
  • Nancy Huebner
  • Tom Hyry*
  • Andrea Vaughn Johnson & Eric Johnson*
  • Angela Kao*
  • Katie K.
  • Cara Labell
  • Elena Mackawgy
  • Matt & Jessica*
  • Carolyn Plum Marshall
  • Paul & Luke McDonough
  • Derek McNally
  • Dave Meier*
  • Lorraina & Ben Morrison*
  • Lai & Greg*
  • Elizabeth Murphy
  • Liz O.
  • Jacob Okada*
  • Eva & Tom Okada*
  • Gregg Passin
  • David
  • Nancy Perry*
  • Lisa Pinto*
  • Eileen*
  • Briana Porco
  • Gabriel Presler
  • Josie Raney*
  • Cory
  • Sarah R.
  • Rhona Robbin*
  • Greg Romer
  • Mike Ryan
  • Carla Samodulski*
  • Terri Schiesl
  • Sigrid Schmalzer*
  • Roger Schwartz*
  • Brian Seastone
  • Brigid*
  • Jane Smith*
  • Janet Byrne Smith
  • Fred Speers & Chase Skipper*
  • Lynn Stanley*
  • Matt & Jen*
  • Danielle & Arturo*
  • Kelly Villella*
  • Jasna & Paul
  • Clay & David
  • Sherry Wolfe*
  • Yu Wong*

Reasons to Ride, Reason 6 of ??: The AIDS Quilt, then and today.

I included this image in another post some weeks ago. This is what the AIDS quilt looked like 24 years ago, in 1988, in Central Park, New York City.

The AIDS quilt today includes nearly 50,000 panels, weighs over 53 tons, and would cover 1.3 million square feet were it ever to be displayed all at once. According to a July 24, 2012, article in The Atlantic Monthly, the quilt was on display on the National Mall this summer in its entirety, but because the whole quilt is too big to fit on the Mall all at once, volunteers cycled sections on and off the lawns. The only place you can see the entire thing all in one location now is online. Photo by Mark Theissen appears courtesy of the NAMES Project Foundation.

Reasons to Ride to Fight HIV—Reason 2 of ??: I Live in NYC

AIDS and HIV have no borders. There are no maps that say, “Beyond this point, there be HIV.”

Image

The Carta Marina, an early 16th century map of the Nordic countries. Like many early maps, it featured depictions of dragons, sea monsters, and serpents as a warning, to indicate, as the saying goes, “Beyond this point, there be dragons.”

Nevertheless, some geographical regions get hit harder by HIV than others, for all the usual reasons—economics, population size and concentration, demographic factors (ethnicity, gender, age, sexual orientation, etc.), health care access, education, and the like.

New York City, my birthplace and my current home, was one of two places where the majority of the first AIDS cases occurred; the other was San Francisco.

Image

The AIDS Quilt in Central Park in 1988.

Over 30 years later, New York City remains the epicenter of HIV/AIDS in the United States:

  • More than 107,000 New Yorkers are living with HIV, and thousands more are unaware they’re infected.
  • HIV is the third leading cause of death for New York City residents aged 35 to 54.
  • The case rate for AIDS in New York City is almost triple the U.S. average.
  • HIV transmission through heterosexual sex is outpacing transmission through intravenous drug use by more than four to one.
  • Nearly 80% of new diagnoses are among blacks and Hispanics.

Image

Even within New York City, the playing field for who is directly affected by HIV is far from level. According to an April 2012 health study released by the University of Wisconsin Population Health Institute, based on 2010 Census data, the majority of individuals diagnosed with HIV in New York City were in the South Bronx, Central Brooklyn, and in the Clinton/Hell’s Kitchen, Chelsea, and Harlem neighborhoods of Manhattan. (The New York City metropolitan area map reproduced here relies on the NYC United Hospital Fund (UHF) neighborhood boundaries.)

The good news is that the above data can be used to allocate resources and efforts to the people and places where they are most needed. Case in point: The same week the health study was published, Housing Works, the beneficiary of this year’s Braking the Cycle ride, relaunched a newly renovated  facility, the East New York Community Health Center. As a result, the Center will now be able to provide comprehensive care to Central Brooklyn communities irrespective of their HIV status. The renovation was made possible by a Human Resource & Service Administration (HRSA) grant awarded to Housing Works to provide comprehensive primary care services to the general community, and targeting the homeless community in particular; the expansion of the facility will effectively double the number of primary-care patients seen per year.

New York City is so vast and so densely populated, it can seem like an anonymous place, a place where it’s hard for an individual to have an impact. The Housing Works effort in East New York reminds me of why I do this ride. It reminds me that even in New York City, every small contribution by every individual to make the lives of our neighbors better matters.  Most of all, it reminds me of the many reasons I’m so glad to live here and be a born-and-bred New Yorker.

Sources: “A Vision of a Grim Past and a Hopeful Future,” New York Times, April 8, 2012Housing Works East NY Center ribbon cutting; Housing Works East NY Center re-opening