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.