Stories From AIDS LifeCycle, The 545 Mile Ride to End AIDS

aids-lifecycle

Image courtesy of Tanya Times.

AIDS LifeCycle is more than just a physically taxing 545-mile ride, it's a moving tent city and a week-long positivity-fueled excursion where lives are changed for the better, lifelong relationships are forged and record-breaking funds are raised to support HIV/AIDS services offered by the Los Angeles LGBT Center and the San Francisco AIDS Foundation.

This Sunday, May 31, thousands of cyclists, volunteers and roadies will embark on the seven-day journey from San Francisco to Los Angeles in an effort to "Ride to End AIDS." Three participants and Long Beach residents—a major advocate for women's cycling, an employee at the Los Angeles LGBT Center and a local who is in his 25th year living with HIV/AIDS—shared their individual experiences with the Post, and talked about the ride's unique and quirky culture.

CINDY DECKER

aidslc7Not only is Cindy Decker an avid AIDS LifeCyclist and a tactful fundraiser, she's a major advocate for women's cycling and a rarity in the cycling industry, where, although the number is growing, very few women hold a position in the mechanics' workshop. While she rode her first AIDS LifeCycle last year, pushing herself well beyond her physical limits, this year she will be riding and working as part of Long Beach-based Performance Bicycle's support crew, fixing flats and other cyclist's mechanical mishaps along the route.

How she found herself in this rare position to take care of the riders, in addition to riding the 545-mile route, is nothing short of expected from a woman with a background in community service and a knack for smashing gender stereotypes.

Decker moved from Simi Valley to Long Beach in January 2014, bought a bicycle in August in an effort to develop a healthier lifestyle and found Team Long Beach, an all-inclusive group of cyclists, activists and community volunteers. They convinced her to join their AIDS LifeCycle team, but before taking on the "overwhelming" task of training for the over-500-mile ride and raising $3,000 to do it, she got her feet wet with the Tour de Cure, an annual ride in Long Beach that raises funds to prevent and cure diabetes.

As she was preparing for both events, a friend invited her to Performance Bicycle's Great Ride Series, where she met the unofficial Performance Tour de Cure team. The company was lending the support of a mechanics crew along the route, which inspired Decker to want to learn the trade as well. For her next Tour de Cure, which took place this past April, Decker was inspired to "wrench it," or in other words, assist the ride mechanically. However, she had never touched a bicycle, in the nuts-and-bolts sense, in her life.

Following the suggestion of a fellow female cyclist, she applied for the 2015 Women’s Bicycle Mechanic Scholarship and became one of 10 women chosen out of 800 who applied to attend the two-week-long course at United Bicycle Institute (UBI), a school for bicycle mechanics in Ashland, Oregon. 

"It was really the first place I was encouraged to pick up a wrench," Decker said. She had never even changed a flat tire before. "I learned there that it's all about knowledge and then it's just knowing and practicing. I really felt transformed through the process."

aidslc9Now Decker's job, aside from wrenching, is to encourage and empower other women to ride and work on their own bicycles without hesitation. She supports rides for women at 10 of Performance’s stores, including the one in Long Beach where her healthy habit-turned-career first started in March 2014. If a woman is interested in becoming a mechanic at Performance, it’s now her job to facilitate the process.

"When I first started [at Performance] a year ago, there were only a handful of women working. So now more women are working," she said with an assured nod.

Decker will apply her love for cycling and service and her newly-honed mechanical skills at her second AIDS LifeCycle this year. “Number one, it will change your life," she said about her first year experience. 

“People overcome the most amazing obstacles to ride[...],” she continued. “The love, respect, that people show each other [during the ride], they encourage people to spread that same love wherever you go in life. If everybody could be like this the world would be a different place. It’s life-changing for anyone who’s a first-time rider.”

aidslc10She recalls meeting a woman and fellow cyclist who would go into brothels to find kids who had been sent there by their parents, to bring them back to the center where they would be safe and could utilize its resources if needed. Decker discovered that the woman had once been sent to a brothel herself as a youth.

Decker is especially looking forward to Red Dress Day, a day during the ride where everyone, roadies and cyclists included, wears a red dress as a memorial for those who have lost their lives to AIDS.

“With 2500 people riding, you can see this ribbon of red for miles up the hills,” she said. “It’s really astonishing to see.”

Decker also mentioned the “Chicken Lady,” an endearing quirk of the tour’s unique culture, where a cyclist dressed as a chicken drops off little plastic eggs that contain encouraging sayings within, to riders who seem especially discouraged.

And with an 80-mile-per-day average, it’s no wonder that even the smallest bit of encouragement can determine whether you’re going to get off and walk your steel steed or pedal those last few strokes over a daunting incline.

Always willing to lend a hand, a wrench or advice, Decker emphasized that riding every mile is not necessarily the most important part of the experience. She recalled an 86-year-old member of Team Long Beach whose goal was to ride the 25 miles to the first rest stop every day, no more and no less.

“A lot of people are under the impression that you have to ride all 545 miles, and that’s not the case," she said. "Everyone loves and supports you even if you don’t ride at all. So that’s one thing I would tell someone new, is you don’t have to ride all the miles, do what works for you and it will change your life."

TANYA TIMES

aidslc4Tanya Times, resident services coordinator at the Los Angeles LGBT Center, broke her arm during a training ride eight weeks before her first AIDS LifeCycle in 2014, after she had raised well over the minimum $3,000 required to participate as a cyclist. What could have completely deterred her from going actually assisted her fundraising efforts and prompted her to request that her cast be taken off early.

Not only had her arm been broken before the ride, but her heart took quite a beating as well. Her partner, the woman who had introduced her to the mere thought of participating in AIDS LifeCycle, decided at the last minute not to go, marking the end of their relationship.

“She got me to LifeCycle, so that was a good thing,” Times said. “I thought about not going, but at that point I had worked so hard training and I was like, ‘No, I’m getting this cast off early. I’m raising this money.’”

Still, she said, the first day of the ride was daunting. "I'll never forget looking up at the first hill, and it's almost straight up, and I was like, 'Uh, I didn't train for this,’" she said.

“I actually got halfway up and got off to start walking the bike," she said. "And a couple of big guys came up behind me and said, 'Get back on your bike, you have to ride up your first hill.' And they pushed me, they helped me get up the hill. That's the kind of spirit that the whole ride embodies, they call it the ‘Love Bubble’ because it's just this big moving community for a week of people that are just amazing, awesome and supportive.”

On day four of the tour, she was in a lot of pain, but didn’t want to stop. Her arm had begun to swell to the point that, by the time she arrived at the medical tent, the technician told her immediately she was done riding. And while understandably disappointed, she was able to experience the route as a roadie for the remaining days, a combination of participation most participants don’t get to take part in. For AIDS LifeCycle 2015, she has chosen to donate her time solely as a roadie, working as a bus liaison.

Times found her passion for helping others during the late 80s when she started volunteering at a mental health center in a small Wisconsin town that did not have any resources for HIV positive patients at the time. As an impressionable 16 year-old, she met Lawrence, a 17-year-old patient in the ward who had contracted HIV from a blood transfusion and had nowhere else to go.

aidslc6“There was nowhere to put him so he was in the mental ward with all the runaways and the suicidal teens and he just really had a big impact on me,” she said. “I remember seeing people getting the sores, getting the open wounds, dying...even in little Green Bay, WI, people were dying and the resources just weren’t there.”

One year later, the first resource center opened in Green Bay. Lawrence was moved to the new facility, a place Times described as “just a tiny little closet,” and she soon followed him to begin volunteer work at her first HIV/AIDS research center.

“We lost Lawrence a year later, but I stuck with it," she said. "He really changed my life.”

Times has been a volunteer for HIV/AIDS initiatives since her late teens, and now spends her time working with seniors at the Center in Los Angeles. She’s quite attached to the residents, whom she fondly thinks of as her 30 very supportive grandparents.

"[... S]ome of them are crossdressers and transvestites and some of them are bi; they’re crazy, but I love them,” she laughed. “I’m really attached. I think that’s the biggest downfall of my job is that I get too attached. They’re good people.”

When asked how getting too attached could be a bad thing, Times delved into the harsher realities of her position.

“One of my favorites has cancer right now[...] and she's just got a beautiful love story with her and her partner, Sylvia, who were together for 40 or some years," she said. "Sylvia passed away and Alice has been without her for the last seven years and now she's not doing well and it's hard to watch. But, it's part of the job, so…” she trailed off. 

When Times rides or roadies, she thinks about the seniors she supports at the center, the youth that use the center’s services, and especially Lawrence.

aidslc5“On the second day last year I had a woman come up to me and say, 'I've used the services at the San Francisco clinic and without that, I probably wouldn't be alive," she said. "I have HIV, I'm a drug user, I'm almost 60 years old. That one hit home with me because I do work with the seniors and have a really special attachment with the older adults. So yeah, she made me start crying.”

Although vast improvements have been made since Times started volunteering in the 80s, she feels that AIDS LifeCycle, as well as her work at the center, are of the utmost importance to continue raising awareness for those living with the virus, especially youth.

“Nowadays it's the younger people,” she explained. “The biggest group contracting HIV/AIDs now is between the ages of 13 and 21. It's pretty scary.”

Times recalled a 22-year-old banging on the office door begging for help because he saw the sign that read “LGBT” and didn’t have anywhere else to go. The young man had been kicked out of his parents house two days before and could barely walk.

“He had nowhere to go,” said Times, “So we got him set up in the youth facility and got him a bed, a clean shirt, some food. He’s another one that’s using the services that we ride for.”

She said that's why she's helping. "Because of them.”

Decker, Times, Eric Crow, and all of the other participants in this year's 2015 AIDS LifeCycle will be attending in memory of Edna Flores, who passed away last year on her 13th LifeCycle, due to non-cycling related heart issues. Times said Flores' husband is still riding the tour this year in her memory.

"It's devastating," explained Times. "It's like losing a part of your family because you get so—even though there's 2,000 riders—you get so close."

ERIC CROW

aidslc1According to the HIV/AIDS Facts and Figures, a sobering list composed by AIDS LifeCycle, the epidemic is still a prominent health issue on a global scale, with an estimated 33.3 million people living with HIV/AIDs. To apply these figures within a local sphere, in Los Angeles alone, more than 44,450 people are living with HIV, of which 24,600 are living with AIDS.

And the communities within Los Angeles county with the largest number of people living with the now-slightly-less-stigmatized disease are Long Beach, Hollywood, West Hollywood and Downtown Los Angeles.

AIDS is more than just a number, it’s an identity. AIDS is Long Beach local Eric Crow, who was first diagnosed with HIV 25 years ago and will be embarking on his second AIDS LifeCycle as a roadie in celebration of his life and future.

Crow shakes my hand in greeting, then rubs his shoulder, mentioning quite bluntly that his tendinitis probably has something to do with the virus.

He has no qualms with sharing that this 2015 AIDS Life Cycle will not only be a celebration of living a quarter of a year with AIDS, but his 20th year being drug-free from a five-year addiction to meth. Crow remembers his HIV diagnosis with crystalline clarity.

“This was during the time when doctors still didn't know a lot about it," he said. "This was when everybody was dropping, left and right. So, I was understandably dazed and just walking out of the office home, basically getting ready to die.” He said the thought behind HIV treatment then was that all doctors could do was prolong one's life, and at best, "you only had a couple of years left to live." The only existing HIV treatment medication in that era was AZT, he noted. 

Crow was officially diagnosed with "full-blown" AIDS in 1996. While during that “worst year,” Crow described being bedridden in the hospital during Thanksgiving weekend with a T-cell count of 43 and a host of opportunistic infections. He survived, but barely.

“I wasn’t expecting that that was it,” he said, “but I didn’t know what else it was. Maybe a month later I was sitting in my bedroom one day and realizing that yeah, I'd survived it. So... why? It's that ‘Why am I here, what's my purpose?’ kind of thing.”

aidslc2Soon after, Crow began taking protease inhibitor cocktails, an approach approved by the FDA in 1996, composed of three drugs that when taken together and correctly, stopped the virus from forming mature virions. It wouldn't cure the patient, but it would allow them to live for much longer than just a few years. Crow described his month-long recovery as nothing short of “miraculous.”

“I got my future back,” he said. “I’m living as much into my future as I can.”

“When the drugs really started to work for a lot of people, the expected lifespan when up to about 25 to 30 years and this was around 2000 or so,” he continued. “And just recently I heard that the lifespan had gone up to about 55 years. So it got me thinking that 55 years is a normal lifespan. So to answer the question, to how it has affected me, is it got me thinking, ‘What's really the point in counting it anymore?’ If I'm living a normal lifespan then, in that way, HIV is dead in me.”

The Detroit native and former San Diego and San Francisco resident supports his partner, Buzz, who will be riding the tour this year and has also been living with AIDS, although Crow says he hasn’t officially been diagnosed yet. Crow moved to Long Beach in 2011 to be with him and makes it a point to check in with him among the thousands of other cyclists he’ll hand a sandwich to at the halfway mark and lunch stop during each day of the ride.

As a member of the “lunchies,” or the roadies who are in charge of distributing lunch, Crow is in a unique position to see the cyclists at the halfway point of each day’s route.

“Some of them are happy, some of them are a little delirious, some are just, ‘Oh, give me my sandwich and go away,’” he laughed. “And that’s all good because I think anybody that puts themselves through an endurance test like that would maybe be lying if they didn't have the full experience.”

aidslc3While Crow has volunteered for several types of events, raising money and volunteering as a roadie for AIDS LifeCycle has helped him discover an altruistic side of himself he didn’t know he had. He learned from other roadies that had been working the route for several years how to put the cyclists first.

“I would make it a point to say, ‘Congratulations, how did it feel?’” he said. “And that was a good experience in terms of helping me remember that I’m there for them. And I've always been the type of person to lend support, but this took it up a couple notches.”

This year, Crow is especially looking forward to the Candlelight Vigil on Day Six when for him, he said, “the event becomes concrete.” After the evening announcements, all 2,500 plus participants walk out onto the beach and form a large circle of silence, then raise their candles to those that “have gone on ahead of us.”

“And that’s that,” he said. “That's a moment that people write novels about.”

Crow said that even while he’s working for others on the route, he’s consistently contemplating why. 

“If the roadie is raising money like I am, that comes into play a lot, because yes, my God—if it wasn’t for the services that were around when I was at my worst, I wouldn’t be here," he said.

“That’s what I’m doing it for, that’s what I’m still doing it for and for other people. It's not the same as it was 20 years ago but that doesn't mean that the challenges aren't on the same level.”

Crow remembers his first day on the road, when he began to realize what he’d gotten himself into.

“Day one lunch was going along fine, I was having a good time with it,” he said. “And then the rush came.”

He continued, “In a space of about 30 minutes, like 900 people [came through]. I'm literally asking, 'Did that just happen?' I guess gobsmacked is the correct word for it. It's like, you get hit with so many of those moments during the ride that it really does something to you up here (he points to his head) and in here (he points to his heart), it's something that you contemplate.”

For more information about AIDS LifeCycle, click here.  

All images provided by Cindy Decker, Tanya Times and Eric Crow.



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