Braking AIDS Ride Gear-Up: 2012 Snapshots from the Road, Boston to New York

At this time next week, I will be getting up at an ungodly hour to ride out of Boston for Day 1 and the first 100 miles of Braking AIDS Ride 2013. I am now at a point where I am making lists of the miscellaneous items I need to buy before I pack. I am less than $1,000 away from my $10,000 fundraising goal (yes yes, donations can continue to roll in! Donate once! Donate twice! Donate three times a lady! Donate here and now!). Last week, The Blue Streak got a major cleaning, a tune-up, and a new chain. I look at that bike every day and I still marvel that I’ve ridden over 12,000 miles on her, that I somehow became a person capable of logging 12,000 miles on anything without a motor. I will likely put in one more long ride this weekend and maybe a few shorter ones, but the time for hard-core training is done. I now have to enter that exciting, terrifying well of uncertainty in which my questions and doubts tend to echo loudly, and I just have to sit with them, and with my hopes, my goals, my disappointments, my strengths and weaknesses, and while letting myself feel that vast sea of all I put into and get from this ride, I also need to trust myself, trust the training, and trust that I can handle whatever the ride and the road brings me.

After last year’s Braking AIDS Ride, I did a thank-you and 2012 post-ride write-up here in late October here, mostly focusing on the closing ceremony where I had the honor to speak. But I also meant to do a second postscript, replete with select photos from the journey, which was full of torrential rain, cold, hills, tears, grief, and more laughter and love and good will than I thought possible, from myself or anyone else. But Hurricane Sandy hit New York and our neighborhood hard, and then the holiday frenzy began, so this draft of a post stayed in my blog archive, unpublished all year.

I am sharing it now because the experiences and moments captured in these images represent only a fraction of what I wish I could say every time someone asks me why I do this ride for this cause, and why the next year and the next and the next, I do it again.

Me, riding in the pouring rain early Friday morning, Sept. 28, 2012, in Massachusetts, Day 1 of the ride. I don’t always look this serious when I cycle. But I do always look this serious when I’m freezing. Photo by Alan Barnett.

Crew member Laurel Devaney, rider Jordana Swan, and me, posing at Oasis 1, on Day 1, Friday, Sept. 28, 2012. When I first wrote this caption last October, it was about the rain and the cold. But Jordana passed away unexpectedly on Nov. 3 at age 31. I wanted to keep the lovely photo up, but I thought it would be more fitting to say something about Jordana. I didn’t know Jordana well, but I rode with her on Day 3 in the morning, and she was spirited, generous, energetic. Smiling every time I saw her all weekend. I didn’t know it at the time, but it turns out she crewed on the day that she was unable to ride, and on Friday night, after all our bicycles had taken from the all-day storm, she also volunteered to help clean everyone’s bike chains. Her death is a terrible loss, and she is much missed. Photo by Alan Barnett.

Me, still wet and cold, but decidedly happier, later on Day 1, Friday, Sept. 29, 2012. Photo by Alan Barnett.

The cards and messages left for us by members of the First Congregational Church of Griswold in Connecticut, near the end of Day 1, Friday, Sept. 28, 2012.

Members of First Congregational Church of Griswold were on hand at the church to serve us fresh pie, ice cream, hot coffee and tea, and all sorts of other baked treats. Their kindness warmed the entire space. It was an amazing place to have as the last oasis before the hotel in Norwich, Connecticut, especially after riding in the freezing rain all day long. Photo by Alan Barnett.

The members of the First Congregation Church of Griswold left a wooden cross for all the riders and crews of Braking AIDS Ride to sign. The cross remained there so that the entire congregation could see it on Sunday, but it was eventually sent to Housing Works, where it remains on display. Photo by Alan Barnett.

A number of the messages on the cross were dedications to the memory of friend and fellow Braking AIDS Ride rider Kyle Spidle, who passed away unexpectedly from meningitis the week before last year’s ride. He was 32 years old. Many of us knew Kyle from his first ride in 2008; he found out he himself was HIV+, just a handful of weeks before that ride. He came out with his HIV status at dinner on Day 2, in front of over 150 people, most of whom had only known him for two days, myself included. Watching him do that was one of the bravest, most moving, sad things I’ve ever witnessed. He rode as a PosPed (an openly HIV+ rider) the rest of that weekend, and for every day of every ride in the subsequent three years. Kyle was kind, inspiring, funny, and courageous, and I think of him often. Photo by Alan Barnett.

Kyle, 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.

Kyle, 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.

Kyle, 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, giving crew member Amy Hemphill a kiss for helping him fix a flat, Sept. 2009.

Friend and rider Chris Vaughn signing the cross at the First Congregational Church of Griswold. Photo by Alan Barnett.

Jen, picking out a card for us from the basket left for us by the children members of First Congregational Church of Griswold. The card is shown in two photos below. Photo by Alan Barnett.

The card Jen picked out for us, from the slew of cards made for Braking the Cycle riders and crew by children from the First Congregational Church of Griswold, Griswold, Connecticut. Day 1, Friday, Sept. 28, 2012.

Interior message of the above card, made by one of the children from the First Congregational Church of Griswold, Griswold, Connecticut. Day 1, Friday, Sept. 28, 2012.

The front of another of the cards made by one of the children from the First Congregational Church of Griswold in Connecticut. This was the one I picked out from the full basket of messages they left for us.

The interior message of above card made by one of the children from the First Congregational Church of Griswold in Connecticut.

Friends and fellow riders Colby Smith and Chris Vaughn, Day 2, Sept. 29, 2012, also known as Red Dress Day, where the idea is, if every rider wore something red in memory of those who die from AIDS-related causes and those who live with HIV, and one took an overhead photograph of the ride-in-progress, from the bird's eye view, the ride would look like a red ribbon.

Friends an d fellow riders Colby Smith and Chris Vaughn, Day 2, Sept. 29, 2012, also known as Red Dress Day. The idea behind Red Dress Day is, if every rider wore something red in memory of those who died from AIDS-related causes and those who live with HIV, and one took an overhead photographs of the ride-in-progress, from the bird’s eye view, the ride would look like a red ribbon.

Fellow riders on the ferry, just after having climbed the infamous Mount Archer in East Lyme, Connecticut, Day 2, Sept. 29, 2012.

Fellow riders Courtney Burbela and Mason Scherzer, on the ferry, just after having climbed the infamous Mount Archer in East Lyme, Connecticut, Day 2, Sept. 29, 2012.

Me, hugging new friend and Braking AIDS Ride 2012 husband Matt Martin, near the end of Day 2, Milford, Connecticut. Photo by Alan Barnett.

Close-up of me and Matt Martin, at an oasis in Nathan Hale Park, New Haven, Connecticut, Day 2, Saturday, Sept. 29, 2012. Photo by Alan Barnett.

“Thank god! An oasis!” Me, arriving at Silver Sands State Park, Milford, Connecticut, Day 2, Saturday, Sept. 29, 2012. Photo by Alan Barnett.

Rider Claude Grazia had his girlfriend meet us at Silver Sands State Park, the last oasis before the hotel in Bridgeport, Connecticut, on Day 2, Saturday, Sept. 29, 2012. Claude’s girlfriend brought this adorable creature, who was the first to greet me and attack me with love and dog kisses and licks when I got there. Photo by Alan Barnett.

With fellow riders, about to turn the corner onto 9th Street where a crowd of applauding friends, family, and other supporters awaited us. It is entirely unclear to me what I might have swallowed to produce the beautiful expression on my face.

Sunday, Sept. 30, 2012, Day 3, New York City. With fellow riders, about to turn the corner onto 9th Street where a crowd of applauding friends, family, and other supporters awaited us. It is entirely unclear to me what I might have swallowed to produce the beautiful expression on my face.

The check for nearly $221,000 that we presented to Housing Works at closing ceremonies on Sept. 30, 2012. The actual final total was  higher, as riders and crew continued to fundraise until the end of October.

The check for nearly $221,000 that we presented to Housing Works at closing ceremonies on Sept. 30, 2012. The actual final total was higher, as riders and crew continued to fundraise until the end of October.

Outer Cape Century Bike Ride: A Photo Essay

As part of my training for Braking AIDS Ride every year, it’s critical, psychologically as well as physically, for me to put in at least one century ride (a ride equaling 100 miles) prior to the ride event. In past years, I’ve tried to do at least two century rides, the first in late Jule or early August, but some years, between weather, time, travel, and the usual life-juggling factors, I’m only able to do one, and some years, the best way to get it done is to do my century when I’m on vacation. We go to Cape Cod for a week every year in early September, and I’ve taken to using one of those days to complete my century ride. I could rent a bicycle easily enough, but the more one rides, the more one is attached, emotionally and physically, to one’s own bike. So each year, we pack our two bikes into our car and drive them up to Cape Cod so we can ride them while we’re there.

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The New Yorker approach to transporting two bikes up to Cape Cod: Two bike frames in the trunk, along with miscellaneous beach mats, helmets, and bike pump, and all luggage and kitchen supplies packed into the backseat. As you can see, The Blue Streak has been disassembled and stacked on top of Jen’s hybrid bicycle in the trunk of our rental car. Given the odd angles of the handlebars and the bicycle forks, it’s more of a challenge than you would imagine. Two wheels fit atop the two bikes in the trunk; the others went tightly wedged behind our seats in the car. Re-assembly is my first task upon arrival at our Drummer Cove, Wellfleet, destination.

Sadie navigating

Sadie, helping me navigate on our first morning on Cape Cod, driving from Drummer Cove, Wellfleet, to the Flying Fish Cafe in the center of town, where the world’s best scones and muffins are made. (It is a well-known fact that the Cape Cod muffin, which contains a mix of blueberries and cranberries, is the only muffin in the world I will praise openly and seek out actively.)

This year, I completed my 104-miler training ride on Tuesday, September 4. The maps below offer a visual view of my route, which began in South Wellfleet at Drummer Cove.

view of Drummer Cove

My starting point for my 104-mile bike ride: Drummer Cove, Wellfleet. The cottage we’ve rented for the past decade is one of about 6 to 8 small houses right next to the marsh and Drummer Cove. Tucked between Route 6 and the cove, the cottages are shaded by a copse of tall pines, so it’s surprisingly quiet and beautiful, despite the close proximity to the highway.

Map of Cape Cod. The detail of this map offers a clearer view of my 104-mile ride route, but this map gives a better sense of the overall scale and distances covered.

Map of Cape Cod. The detail of this map below offers a clearer view of my 104-mile ride route, but this map gives a better sense of the overall scale and distances covered.

Detail view of my 104-mile ride route, Outer Cape, September 4, 2013. My route began in South Wellfleet at Drummer Cove, proceeded to Provincetown and back to Drummer Cove for lunch, then down to South Dennis and back. The purple line shows my the first half of my ride, from Wellfleet through Truro to the West End beaches and dune bike trails of Provincetown and back to Wellfleet. The yellow line represents the post-lunch second half, from Wellfleet through Eastham, Orleans, Brewster, and Harwich to South Dennis and back again.

Detail view of my 104-mile ride route, Outer Cape, September 4, 2013. My route began in South Wellfleet at Drummer Cove, proceeded to Provincetown and back to Drummer Cove for lunch, then down to South Dennis and back. The purple line shows my the first half of my ride, from Wellfleet through Truro to the West End beaches and dune bike trails of Provincetown and back to Wellfleet. The yellow line represents the post-lunch second half, from Wellfleet through Eastham, Orleans, Brewster, and Harwich to South Dennis and back again.

In the morning, when I left Drummer Cove, I began riding east on Route 6, the sole highway on the Outer Cape (with just one lane of traffic going in each direction for most of it), and made a quick left onto Lecounts Hollow Road to make my way to Ocean View Drive, which runs along the eastern coast and offers a cliff-/dune-side view of the ocean shoreline and the beaches of Wellfleet. It’s also a road that’s less trafficked by cars than the highway and is not only more scenic, but hillier and windier, and therefore more challenging riding terrain. At the end of Ocean View Drive, the road splits one last time, and you can either take a left onto Gross Hill Road and Gull Pond Road, heading westward back toward Route 6 and Wellfleet Center, or you can take Ocean View down a sloping hill to its end at Newcomb Hollow Beach. I did both, coasting down Ocean View, stopping briefly at Newcomb Hollow Beach to take the photos below, then turning around to climb back up the hill to the intersection with Gross Hill Road. I then headed along the gentle rolling hills of Gross Hill and Gull Pond Roads, cool and shaded by scrubs pines and red cedar trees, passed Gull Pond and back toward the highway. Where Gull Pond Road meets Route 6, I took a right onto the highway, passing the best source of fried clams and other deep-fried seafood delights in the area: Moby Dick’s Restaurant.

Newcomb Hollow 3

A foggy, chilly, overcast morning at Newcomb Hollow Beach, Wellfleet. It was just cold and windy enough that I wore my arm warmers for the first 10 miles of my ride.

Newcomb Hollow

Newcomb Hollow Beach, Wellfleet, morning of September 4, 2013, about 8 miles into my century ride.

The sky was overcast and gray as I rode along Ocean View Drive. It was chilly and no one was on the beach. I wasn’t sure it would clear up at all and was prepared to ride the bulk of my century ride in the rain. But the weather on the Cape can change in a heartbeat, and that Tuesday morning was no exception. The clouds burned off and by the time I made my way past Gull Pond and back to Route 6 heading east to Truro, less than 15 miles into my ride, the sun was out and the arm warmers came off. I rode on Route 6 for another 6 miles, until it meets Route 6A, also called Shore Road, which runs right next to the bay side of the western Outer Cape Cod coastline, and then I took Shore Road the rest of the way to Provincetown. It was still early morning, so town was quiet as I rode down Commercial Street from the East End to the West End of Provincetown. Once I got to the West End of town, I turned right on Province Lands Road, and headed first to Herring Cove, where I took off my biking shoes, waded into the water, and leaned over to wet my head and cool off. From there I traversed the Province Lands biking trails that wind up and down through the stretch of dunes and marsh grasses between Herring Cove and Race Point, where I stopped again to eat a power bar and rest.

Picture 11

Gull Pond, Wellfleet.

moby-dicks-wellfleet-ma

Moby Dick’s Restaurant, Wellfleet, from the intersection of Gull Pond Road and Route 6. Yes, the sign really says, “For a Whale of a Meal.” Don’t let that deter you if you’re ever in the vicinity. The seafood is excellent, and one entrée is great for two people to split.

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The decor inside Moby Dick’s Restaurant, Wellfleet. Lots of nautical-themed curios and knick-knacks: fish, fishing nets and traps, buoys, anchors, all lit by holiday lights strung along the rafters. During my century ride, it was too early to stop for a snack, sadly—Moby’s doesn’t open until 11:30am for the early-bird lunch crowd—but we did eat there one evening during our stay. Mmmmm…. clam strips. Fried good good is good good!

Truro hills

Hilly terrain in Truro, from Shore Road/Route 6A.

Truro from Rte

Scrub pines and woods in Truro, about Mile 20 of my ride for the day.

Beach cottages truro

Beach cottages overlooking the bay along Shore Road/Route 6A, Truro.

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Truro, facing east and Route 6, from Stotts Crossing, a tiny little strip of connector road linking Route 6A, the shore road, with Route 6, the only highway on the Outer Cape.

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View from Shore Road/Route 6A in Truro, facing west, back toward Wellfleet, with Route 6 in the distance.

rowboats

View of rowboats on the water, along Shore Road, Truro.

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Pilgrim Lake and dunes, Truro, facing east from Shore Road.

Ptown from 6a

Hazy view of Provincetown in the distance, from Shore Road/Route 6A, Truro.

Ptown from 6a

Another view of Provincetown, farther along Shore Road/Route 6A, Truro. The haze had burned off, and the day was starting to heat up.

breakwater horizontal

The West End Breakwater, Provincetown. In the distance, to the right of the breakwater’s vanishing point, the tiny bump in the horizon line is Woods End Lighthouse.

west end marshes

The marshes in the West End of Provincetown.

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Another view of the marshes in the West End of Provincetown.

marsh w reeds

March grasses, reeds, and dunes in the West End of Provincetown.

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Herring Cove Beach, Provincetown.

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Herring Cove Beach, Provincetown, moments before I waded into the water to cool off.

One of the Provincelands bike trails between Herring Cove and Race Point, Provincetown.

One of the Provincelands bike trails between Herring Cove and Race Point, Provincetown.

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Overlooking Race Point Beach, Provincetown.

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Sun bathers on Race Point Beach, Provincetown.

Before leaving Provincetown, I stopped at the gas station on Shankpainter Road to replenish my water and Gatorade bottles, and then I headed back to Wellfleet, riding Route 6 out of town, then picking up the Shore Road again going home, though I did take a couple of detours to do some additional hill riding along the way. One of the nice things about doing this century ride route is that after my first 50 miles, I get to stop back at home for lunch before doing the second half of it. That meant that in addition to having a delicious sandwich waiting for me, I got to snuggle with my partner and our dog for a few minutes and I had the luxury of being able to trade my sweaty, soaked-through jersey for a clean, dry one.

The remaining 50 miles were easy riding in terms of the terrain. The Cape Cod Rail Trail from Wellfleet to Dennis is relatively flat and it’s also 44 miles total, 22 each way. Because that would leave me 6 miles short of a full century and because I knew I need to put in some more hills before the day was over, I backtracked and re-did my route along Ocean View Drive again before heading to the Wellfleet entrance of the rail trail on Lecounts Hollow Road.

Unlike the rest of my route, much of the trail is overgrown with trees and offers more shading from the elements than most of the roads on Cape Cod. This turned out to be fortuitous because the weather took another 180 turn. Ocean View took me less than half an hour, but by the time I began on the rail trail, the sky was turning gray again, with heavier cloud clusters than those of early that morning. The first downpour hit when I was in Eastham, the next town over from Wellfleet. That lasted about 15 minutes and then stopped before I reached the town line between Orleans and Brewster, at about Mile 10 of the first 22 to Dennis, but the light stayed green-ish and dark, and it was clear from the strange glow cast on the pavement and on the wet trees that more rain was coming. I got to the Dennis end of the trail with no further rain beyond a few spittles here and there, but I literally didn’t have time to do more than eat a power bar and send a text message to Jen telling her I was heading back and doing my last 22 miles before the sky darkened and rumbled and a flash of lightning struck along the horizon. The sky opened up almost as soon as I got back on the Blue Streak, so I didn’t dawdle, and I pedaled like hell the 22 miles back home, tearing through the near-knee-deep puddles flooding the trail, with the rain coming down in sheets the whole time.

storm clouds

Cape Cod storm clouds gathering, before a deluge. The thunderstorm that drenched me all 22 miles back from Dennis to Wellfleet swooped in so fast, I didn’t stop to take out my camera, which would have gotten soaked and ruined. But the storm clouds depicted here, of another Cape Cod rainstorm, give a pretty accurate idea of what the sky looked like just before it started to pour during the last 22 miles of my century ride on September 4, 2013.

Railtrail, Brewster

The Cape Cod Rail Trail, Brewster, on a different, sunnier day.

rail trail tunnel

The Cape Cod Rail Trail, again on a different, sunnier day. Several small metal tunnels appear along the 22-mile rail trail between Wellfleet and Dennis. I include the image of this one because the storm I rode through became so severe, that when I was about to pedal through one of them, not only was it flooded, it was also occupied by more than a dozen wet people and several bicycles. One by one, cyclists, walkers, and runners had ducked into one of these metal tubes during the storm because, except for a campground area somewhere in Brewster with a hut that houses a public bathroom, these tunnels offer the only shelter on the rail trail itself. The tunnel was packed with people and I was already soaked and intent on getting home, so I didn’t stop with them, but they clearly intended to either wait the storm out or wait until the rain lightened. I rode at least another 12 miles after I encountered these folks and it poured the whole time, so they must have given up and braved the elements or stayed there, cold and wet, for a good, long time.

I was never happier than when I opened the door to our little Drummer Cove cabin. The Blue Streak and I were drenched, so I stripped out of my cycling clothes in the doorway in order not to trek water and mud and sand into the house, and then I wiped the bike down and emptied the saddle bag and hung it from a rack in the bathroom, so rainwater wouldn’t drip and pool on the floor as everything dried.

I got back home to Drummer Cove in the nick of time, it seems. The storm worsened, and pounded down on our cottage for the next five and a half hours, all through the evening. My rewards for making it through 25 miles of cycling under torrential showers were numerous and simple and full of tactile pleasures, a hot shower, dry clothes, an evening relaxing on the couch with my wife and my dog, a massage, cold beverages of all kinds (hydrating water and seltzer and juice, followed by a glass of crisp white wine), a delicious dinner of fresh seafood and grilled vegetables, and the sight of this distance on my bike odometer:

century odometer

What joy: A 104-mile bike ride, completed.

Braking AIDS Ride in 150 Seconds

One of the questions I get most frequently about the Braking AIDS Ride is about why I keep going back for more. I mean, let’s face it. Biking nearly 300 miles in three days, rain or shine, sound like… well, it sounds like lunacy.

That three-day lunacy every September also means that beginning every March and April, most of my weekends are all about training. Not brunch. Not going out. Not staying in bed with my devoted wife, who loves me and this cause enough to let me make her a bike widow for four to six months every year. Not snuggling with my dog. Not seeing friends. Not reading. Not writing. 

Have I mentioned no brunch?

Every weekend, each time I cycle up the long Alpine hill at the northern end of Palisades Park, I keep hoping that a brunch feast like this will be waiting for me when I get to the crest and  then roll into at the rangers' station. I've been riding that hill for years now. Where are my damn poached eggs?

Every weekend, each time I cycle up the long Alpine hill at the northern end of Palisades Park, I keep hoping that a brunch feast like this will be waiting for me when I reach the crest and then roll into at the rangers’ station. I’ve been riding that hill for years now. Where are my damn poached eggs?

I’ve written many a wordy post articulating the numerous reasons I am thrilled to participate in this cause and on behalf of Housing Works and this ride, despite the lack of poached eggs available on River Road in Palisades Park. Words are my strongest medium, but I have a great appreciation for the visual as well. The fine folks at Black Watch Productions, who have been participating in and documenting the ride on film every year since its inception, have managed to capture the spirit of the ride in 150 seconds. This is why I keep going back:

For those of you looking for my Hollywood close-up, I don’t appear in the fine bit of footage above, but I do make a few cameos in a slightly longer segment that appears on my Braking Aids Ride donation page. My heroic partner’s amazing efforts as a ride crew member are well-documented in that video as well, beginning around Minute 5; fashionable as ever in her adorable stripey hat, she’s one of the angels literally pushing and running alongside bikers who are trying to claw their way up Mount Archer, the toughest hill on the route. As for me, at 5:40, I prove, in case anyone doubted it, that I’m incapable of climbing Mount Archer without an expletive or two, and The Blue Streak and I, back by popular demand, show up again to wave at the Black Watch folks, on decidedly flatter ground, at 7:26. For those of you dying to see me in spandex, this is your chance.

[INSERT SHAMELESS SELF-SERVING PLUG: Yes, there’s still time to donate! After you’ve enjoyed the donation page video antics, while you’re there, why not make a ride donation to support Housing Works and its amazing work to fight AIDS/HIV? As of this writing, I’ve raised $6,400, 64% of my $10,000 goal, and I need your help to make the remaining 36%. Donate, donate again, and please share the link to this blog and to my donation page (http://bit.ly/ZGvJZl) with your friends, your family, your colleagues!]

And to those of you who’ve donated already, I can’t ever thank you enough. I think of your support, your kindness, and your encouragement with every single pedal stroke on the road.

Women on Bikes! Getting My August Training-Ride Bearings

The summer has zipped by in rather frightening fashion. It’s only two months until Braking AIDS Ride 2013 begins, which means I need to put in some back-to-back long training rides this weekend.

Bearings, for sale here, Charles A. Cox, c. 1890.  Courtesty of Posters: Artists Posters Collection, Library of Congress Prints and Photographs Division.

Bearings, for sale here, Charles A. Cox, c. 1890. Courtesy of Posters: Artist Posters Collection, Library of Congress Prints and Photographs Division.

In my fantasy version of doing back-to-back training rides, a fantasy that tends to dominate my foggy, exhausted thinking at 6:00am on Saturday morning when I’d rather remain in bed, the weather will be as beautiful and mild as it’s been most of this week, the wind will be at my back, the hills will feel like flats, the flats will feel like downhills, and the downhill cruises will feel like heaven on earth. In that imaginative rewrite of my training days, it feels as though the leg power of five other women are powering me and my bike, and the riding is such a piece of cake to us, we’re all reading fashion magazines as we cycle. (For anyone who’s asking, in the illustrated rendition of this fantasy above, I’m the raven-haired woman in front of the blonde caboose rider.)

In reality, it’ll be me, by myself, pedaling on my own steam, trying as best I can to push myself but also live into whatever my body can do that day and whatever the road brings me. What’s nicer about the reality version: Nothing feels better than the moments when I work hard and it pays off. Sure, it would be easier if the roads all felt flat, but then, so would my mood. The highs are that much sweeter when they are hard-won. So, whatever comes these next weeks, bring it on.

On the other hand, while I can forgo the other five women helping me pedal, but if anyone knows where I can get those amazing, red knee-high cycling socks, please contact me ASAP.

To support me and my invisible tandem-bike harem to support Housing Works and fight AIDS, you can still donate here!  I’m at 54% of my $10,000 goal, a sum that’s been achieved, to my amazement, in only a month. So, I’m more than halfway there, and the rest, I hear, is, well, at least partially downhill. Donate early and often!

Cyclist Dreams: Imagining the Finish Line

Braking AIDS Ride is not a race. It’s a three-day, nearly 300-mile endurance ride, as well as what Housing Works’ President and CEO Charles King aptly calls “a civil rights march on wheels” because in addition to the crucial funding the ride raises for Housing Works and its many HIV/AIDS services, it also raises awareness of the disease and the remaining challenges associated with it. (Just this morning, when I rode in to work, I was wearing my brand-spanking-new Braking AIDS Ride jersey, and when I entered the lobby of my work building wearing it, a security guy who has known me for years as the chick who comes in wearing her bike gear stopped me and asked whether I had done the Boston-New York AIDS Ride, and we chatted about it for a few minutes.)

Me riding in the pouring rain early Friday morning, Sept. 28, 2012, in Massachusetts, Day 1 of last year's ride. This is what I look like when I ride and I am taking myself a little too seriously. Which, thankfully, is not 100% of the time...

Me, riding in the pouring rain early Friday morning, Sept. 28, 2012, in Massachusetts, Day 1 of last year’s Braking AIDS Ride. This is what I look like when I ride and I am taking myself a little too seriously. Which, thankfully, is not 100% of the time… Photo courtesy of Alan Barnett.

The ride itself brings together cyclists of all shapes, sizes, and levels of fitness and biking experience, which is one of the things I love about it. Some people aren’t big cyclists at all, and they participate largely because they believe in the cause; they raise money and awareness, they train as much as they can, and on the ride, they show up to have a good time and put in whatever miles they’re able to put in. Some people are unbelievable athletes—racers, marathoners, multi-time triathletes and Ironmen/women, cyclists who can average 18 miles an hour all day long for 100 miles—and they do the ride even though it’s not a race and there’s no award for finishing each day first because they’re connected to the cause as well, and because whether we’re officially timing it or not, the ride itself is a physical challenge for everyone. Most riders, myself included, fall somewhere in between these two opposing ends of the Braking AIDS Ride cyclist spectrum.

Still, in the course of training all summer for this long ride, I sometimes tend to forget I’m not competing with anyone except myself and whatever personal physical goals I might have. I think it’s good to set the bar higher each time one reaches a goal, but I also tend to forget that means it gets harder the longer one works at something rather than easier. Now that I’m doing my fifth Braking AIDS Ride since 2008, I find I have to spend more time contemplating and recalibrating my goals and my expectations as to what “progress” is for myself. I tend to focus so much on what’s next, what the next target is, I forget to turn around once in a while and look back at how far I’ve come since I started all this. When I began training in 2008 for my first Braking AIDS Ride, I had never done a century ride (100 miles in a day), much less three back-to-back centuries. At the beginning of my training that season, I pedaled along at a humbling 12-13 miles per hour on flat road. By the time I did my second ride in September 2009, I had logged something like 4,500 miles on my bike, The Blue Streak, since purchasing it in June 2008, I had raised $20K for the cause over the previous two years, and I was a solid intermediate rider.

In my mind's eye, I looked something like this when I first started training in 2008 as a novice cyclist. Every hill was a slog, every mile was an accomplishment. Image info: Ride a Stearns and be content, Edward Penfield, 1896. Courtesy of Artist Posters Collection, Library of Congress Prints and Photographs Division.

In my mind’s eye, I looked something like this when I first started training in 2008 as a novice cyclist. Every hill was a slog, every mile was an accomplishment. Image info: Ride a Stearns and Be Content, Edward Penfield, 1896. Courtesy of Artist Posters Collection, Library of Congress Prints and Photographs Division.

I’ve more or less stayed within that same rider classification category since then, with some years yielding some minimal athletic progress and others with minor but demoralizing setbacks. Each year, I struggle with training time and balancing other commitments, as well as with my own ego and competitive streak and some mild physical challenges, mostly related to breathing problems, including intermittent, exercise-induced asthma, which I wrote about in a post last season. The other breathing issues are manageable but chronic. I’ve broken my nose four times, the first time at the age of five. It has never been an aesthetic issue to me, so until I became serious about cycling and then tried cross-training one season—specifically some jogging and swimming, both sports that require more upper body work and strength than cycling—I didn’t realize that living with a perpetually deviated septum and therefore, a persistently stuffed nose was holding me back athletically. I kept bumping up against the limits of my own respiratory system on the road for three years until I finally saw an ENT guy for the first time last December to assess things and get some tests done. I hate going to the doctor even for base-level check-ups, so this appointment was a big deal for me, more or less three years in the making. (I know. It’s absurd. I’m working on this avoidance tendency and am getting a little better about this sort of self-maintenance as I get older.) The upshot of the ENT visits is that for walking around, leaving my nose as is is fine (no kidding, as that crunchy schnozz is what I’ve been living with for 35 years), but for hard-core cycling, surgery is likely to be the only thing that will really fix the problem or at least give it a run for its money. The doc gave me a prescription for Nasonex nasal spray, and that helps some—I breathe better when I use it once a day than I do without it—but the longer I train, the more I push up against the fact that even when I’m in decent shape and my muscles are strong enough to do their thing, my breathing feels like more work than it ought to be. The doctor called the surgery optional, a quality-of-life lifestyle choice, and in the grand scheme of things, he’s right. I’d do it in a heartbeat, but surgery is expensive and there’s a lot of unreassuring murkiness surrounding what insurance will cover. I just don’t have five figures to shell out right now for optional surgery so I can ride my bike a little faster and with less respiratory effort. 

It’s unclear to me at this point whether I’ll ever get my nose fixed, about which I sometimes feel frustrated until I remind myself this is really a first-world inconvenience rather than a dire problem. Let’s keep it all in perspective, Mika: I am healthy, I am relatively young, I am gainfully employed. I have a fantastic spouse who is my best friend and who loves and support me in all I do. I can do most of what I want to do. Not everyone can say that.  Several friends of mine who’ve died the past few years—most from illnesses completely unlinked to HIV or AIDS—obviously can’t say that. An old friend who’s my age and who’s been battling cancer (also not HIV-related) for the better part of three years can’t say that. Another friend with an injury from an accident can’t say that, at least not for the next month or two.

I’m going to type it again, for my own benefit, because I suspect I need the repetition when it comes to learning certain lessons and not taking my blessings and the gifts of my life for granted: I can do most of what I want to do. That’s lucky. Really lucky. Even on a day when I feel like shit or my self-esteem is in the toilet (whispering at me that I suck at everything I attempt; amazing how persistent that little devil is even with evidence to the contrary), I can still do most of what I’d like to do and most of what I attempt. Lucky.

With that in mind, I’m going to say here and now that while my primary goals for this ride season are the same base-level ones I have every year—to train as best I can (and yes, that includes riding faster and longer and on more challenging terrain if and when I can manage it), to raise as much HIV and AIDS awareness as I can, to meet if not exceed my ambitious $10,000 fundraising goal (insert shameless plug: Please donate early and donate often! As of this writing, I’m at 52% of my goal and every donation helps!), and to ride every mile of Braking AIDS Ride from Boston to New York this September—my other new goals are to keep my ego in check, to be a little more gentle with the internal self than I usually am, and to maintain some perspective about where my life is abundant and where it is challenging or disappointing whenever I feel that my darkest angels are chasing after me. If I can keep my eye on those goals for longer periods of time, that’ll be huge emotional progress for me.

I have no doubt I’ll still have days when I’ll be finding myself irritable at every advanced racer cyclist who whizzes past me on horizontal, easy terrain or who takes hills at 15mph like they’re pancake flat while I pant up them at a pace that feels excruciating to me. I’ll surely get pissed at myself again for not being able to drag my ass out of bed early enough to put in the ride time I’d like. But I also want to be able to let myself feel those things when they bubble up and then pull back enough to also decide not to purchase the permanent real-estate rights to that low, self-judging emotional space and build a house there, where I can sulk quietly and habitually in the living room of my own disappointment. I want to get more skilled at reminding myself of what I forget too often while I’m training: that the ride part of Braking AIDS Ride is a blast every year no matter how fast or how slow I am, no matter what physical challenges I may encounter. Every day on the road, rain or shine, is a good day. I want to also let myself look forward to the incredible people who I meet on the road every year, individuals who inspire me to be what I hope is my best, most authentic self. I want to know somewhere in the core of me that whether or not I achieve any of my personal goals, on Sunday, September 29, 2012, when all the Braking AIDS riders bike in together to closing ceremonies in New York and there’s a crowd of people waiting on the street cheering us on, many of them clients of Housing Works, and we hand over a check for six figures to support Housing Works, hopefully bringing the world a little closer to the end of HIV/AIDS, I feel like we’re all, every single one of us, number one at the finish line, and inside it feels like this:

Déesse 16, rue Halévy, Paris, Jean de Paleoloque,   c. 1989. Courtesy of Library of Congress Prints and Photographs Division.

Déesse 16, rue Halévy, Paris, Jean de Paleoloque, c. 1989. Courtesy of Library of Congress Prints and Photographs Division.

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.

Signs of Spring

I can think of no better way to usher in the long-awaited vernal equinox than by posting about the following causes for celebration: the recent re-openings of Red Hook’s Fairway and the Red Hook Lobster Pound in Brooklyn several weeks back and my first training ride of the season on Saturday, March 9.

Post-hurricane Red Hook recovery update. Here’s today’s New York Times article about the ongoing Red Hook recovery. Now that the weather is improving and local Red Hook business are opening their newly renovated doors again, please come visit! I can personally vouch for the delicious lobster rolls at the Red Hook Lobster Pound. If a trip out to Brooklyn is too far-flung for you, check the Red Hook Lobster Pound Twitter feed to see if and when the NY Lobster truck will be restarting its Midtown rounds.

To everyone who offered support of any kind to Red Hook and other neighborhoods devastated by Hurricane Sandy during the past five difficult months, thank you again! Little by little, signs of renewal are appearing.

The new bakery at the reopened Fairway in Red Hook. Image courtesy of February 28 Zagat blog post.

A fresh lobster roll from Red Hook Lobster Pound. Image courtesy of March 4 Zagat blog post.

Bike Training 2013. My March 9 training ride took place the day after the Freaky Friday snowstorm that hit us on March 8. My Braking AIDS ride compadrés had scheduled the event as a way to welcome newbie riders and to open the season with a gentle if chilly ride. No one was expecting the snow we got, and on Friday afternoon, a flurry of emails went back and forth.

Me: “Are we still riding tomorrow? It’s really coming down.”

Rider coach Blake Strasser: “Yes! It’s supposed to go up to 50 tomorrow, so it will all be melted by morning.”

The photo below was taken when I left my apartment the following morning to ride to the group meeting point at the Columbus Circle end of Central Park.

My Braking AIDS water bottle, outside my apartment before my first training ride of the season ride, Saturday, March 9, 7:45am.

My Braking AIDS water bottle, outside my apartment, before my first training ride of the season, Saturday, March 9, 7:45am.

Blake’s forecast was…somewhat optimistic, but she wasn’t wrong either. The snow stuck it out for several hours and the air was crisp, but the roads were clear and the sun was out. So I pumped up The Blue Streak’s tires, had a smoothie and some coffee, filled a water bottle, layered up, and hit the road, careful to avoid ice patches along the West Side bike path. I arrived at 59th and 8th Avenue under the golden USS Maine National Monument at 8:15am and was surprised and thrilled to see so many Braking AIDS riders had come out. A special shout-out of gratitude goes out to Kristofer Velasquez and Joseph Rivera for leading and caboosing the group ride that morning. The new riders who showed up get extra props; Friday’s snowstorm made plenty of veterans decide to roll over and sleep in Saturday morning. Most folks did a loop and a half around the park. I wanted to push myself and did two full loops. We then made our way down to the Chelsea offices of Global Impact, which produces and runs the Braking AIDS ride every year. Eric Epstein and Blake Strasser, two of the Global Impact staff quartet (the fourth being Sasha, Eric’s Vizsla, who also serves as the office manager), greeted us with coffee, hot chocolate, and three kinds of breakfast pastry. Sasha greeted us with kisses and snuggles and body rubs. Who can argue with that? We ate, we drank, we rested, and most of us stayed for the ride preview before heading home.

Training Ride #1: 28 miles total. It felt great to be on The Blue Streak again. Not bad for a snowy day in March.

Braking AIDS 2013, which will again benefit Housing Works, takes place this coming September and will be my sixth AIDS ride, my fifth with the Braking AIDS organization and community. Let the training and fundraising begin! Happy spring, everyone.

Riders from the first Braking AIDS Second Saturday training ride of the season, warming up with coffee and hot chocolate, post-ride, Saturday, March 9.

Riders from the first Braking AIDS Second Saturday training ride of the season, warming up with coffee and hot chocolate, post-ride, Saturday, March 9. That’s me in the back row, center, holding up my cup of hot mocha.

Braking the Cycle Postscript 2: Lifecycle of a Donation to Housing Works

Housing Works recently posted this infographic on their site. It’s a cool visual of how the generous donations made, via Braking the Cycle or in general, support the work and services being done there.

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 #3 of ??: In Memory of Curtis Wheeler (1950–2003)

…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.