The Human Cause

Raising awareness of HIV and AIDS one mile at a time.

Archive for the category “Why?”

Beyond Bake Sales and Bumper Stickers

I still remember. It was my first year at UC Santa Cruz, the spring of 1982. The gray skies were visiting less and less, the sun shimmering gold in the meadows. T-shirt weather had arrived and everything was in bloom, including my sense of myself as a woman and a feminist. Within the year, I’d begin to understand why I felt so different from the other girls growing up. I was exploring, barely scratching the surface of activism, social justice and the peace and freedom movement. Walking up to a booth at a women’s faire in downtown Santa Cruz, I came upon a table filled with buttons and bumper stickers. This wasn’t the first one I saw, but it was the one that stuck with me, and some 30 years later, the sentiment is at the heart of my passion and purpose to give back and make a difference.

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I didn’t buy the bumper sticker. I didn’t have a car, and let’s face it. Being a “starving” student in 1982 was a different reality than it is today. Spending $2 on something I didn’t need meant skipping my breakfast of oatmeal and bananas for a week, not simply passing on a soda. I did, however, immediately “buy in” to the concept. The idea struck me hard.

I began cycling in 1998 as part of the Leukemia and Lymphoma Society’s Team in Training fundraising program. TNT started in 1988 with just one man wanting to run a marathon to honor his daughter, a leukemia survivor. Since that landmark marathon fundraiser 25 years ago, TNT has raised $1.3 billion for blood cancer research and patient services. That sounds like a lot. It is. But to put it into perspective, that same $1.3 billion buys only four B-1 bombers.

There are over one million charitable organizations in the United States. Individuals like you and me account for 73% of all charitable donations. Bequests account for another 8% making 81% of all donations from “we, the people” in this country. With as much advertising and sponsorship as we see from the business world, one would be inclined to think corporations are the leaders in the “giving back” game. Not even close. Corporate giving accounts for only 5% of all charitable donations. Here’s a visual.

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According to the U.S. Census Bureau, the average household income in 2011 was $50, 054.

♥ 27% of Americans volunteer
♥ 65% of households give to charity
♥ 81 percent of philanthropic dollars are contributed by individuals and bequests (That figure rises to 88 percent if you include family foundation giving)
♥ Corporate giving accounts for only 5% of all charitable giving
♥ The average household contribution is $2213, about 4.3%

(Source: National Philanthropic Trust)

Charitable giving continues to rise, even in this sluggish economy. It doesn’t really matter where you give of your time or your money, or even how much. What matters is that you give. Give to causes that matter to you and your family. Teach your children the value of giving back. Two thirds of all Americans give to charities and one quarter volunteer. It does take a village.

A button I saw on that same day all those years ago sums it up. Wearing buttons in not enough. To affect change, to make a difference requires commitment and action. And courage. Sometimes, taking that first step, raising your hand to say “I will” presents the biggest challenge. The beauty of it is you get to choose how and where you will change this world. I choose stopping the spread of HIV and creating an AIDS-free generation. THIS is why I ride. This is why “the Ride to End AIDS” doesn’t end until AIDS ends.

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A Community of Heroes

“It is not every day that you meet a true hero. It’s certainly not every day that you meet an entire community of heroes.” – Michael Barron, Director of AIDS/LifeCycle at the Closing Ceremonies.

Tattered and soiled, the message is still the same.

I was graced with the opportunity to spend eight days with this incredible community of heroes – 576 Roadies and 2361 Riders. The love and energy I experienced this past week buoyed my hopes for finding a cure, preventing new infections and making the world a better place for every human being.

It was apparent from Day 0, Orientation Day, that this community was special. We had heard about the energy, the love, the kindness, the inexplicable feeling of being a part of something this beautiful, but it wasn’t until we arrived at the Cow Palace in San Francisco that I started to feel it pulsing through my veins. Each of us was required to attend a safety video before we could pick up our packets. As we sat down, we were asked to turn off our cell phones and give our undivided attention to the most important aspect of the ride: safety. And everyone did. Five minutes in, I was amazed that I could hear a pin drop; thirty minutes in, still, we were all riveted to the information being presented. No one was looking at their cell phones, there were no side conversations going on. I couldn’t remember the last time I felt like everyone in a room (including me) was actually engaged, present in the moment. It reminded me to slow down, look around and take it all in. This whole experience, we’re told, would be over in the blink of an eye and I didn’t want to miss a thing.

My intention going in to the ride was to post regular updates to facebook, but between all that was happening every day and limited access to charging our phones, I found it difficult to keep up. The time I could find to post was usually at the end of the day, as we were settling in, and I usually chose sleep over posting. Over the next few days, I’ll be blogging about some of my experiences on the road, on the SAG buses, in camp, at the rest stops and meeting extraordinary people from all over. There is no way to replay the entire experience, either in my head or here on this blog, but I’ll share some of my memories, and you’ll get a sense of just how special “special” really is.

With riders of all ages, shapes, sizes and abilities on this ride, there is a constant flow of passing riders, going up hills and down, and on the flats. For both safety and courtesy, a passing rider calls out “on your left.” The passed rider says “thank you” to acknowledge they are being passed. I was passed a lot on the ride. A lot. I’m sure those passing got just as tired of saying they were passing as I did acknowledging them. I joked at one point I should invent a detector that would say it for me as a rider passed. But then each time I said “thank you” I began to feel gratitude. Gratitude for just being out there; gratitude for having the health and financial means to commit to making a difference; gratitude for sharing the experience with Carol, Carin and Tammy; gratitude for Team San Diego; gratitude for making cherished new friends in Nicole and Lish; gratitude for the guys who hauled our gear; gratitude for everything – even the stuff that was difficult day in and day out; gratitude for the community of heroes I was now a part of.

So for now, go ahead and pass me on the left. I’ll shout out a big, heartfelt “thank you” and we’ll catch up on this blog at the next rest stop.

Red IS My Color – Red is the Color of Hope

It seems the entire month of April passed without a post – and now May is nearly over. This wasn’t a planned hiatus, but as life continuously reminds us, things don’t often go according to our plan. Needless to say, a lot has happened since March. Briefly and quickly, I turned a year older, we went on vacation experiencing our first cruise (much to my surprise, I was seasick), returned from vacation to start a new job while still doing my old job until my replacement started, finally got in to see a physical medicine specialist about my pain, went to L.A. for Carol’s Roadie training, filed a tax extension because the new IRS requirements for same-sex married couples in a community property state are complicated and lack supporting documentation, got to go to a Padres game, ate at a food truck for the very first time in support of Dining Out for Life, a fundraiser for The Center’s HIV and AIDS services here in San Diego, and pulled more weeds than I ever remember pulling – and there’s still more to be pulled – organic gardening trade off. It’s a busy life, but it’s a good life.

And, I got back on my bike for the first time in months. And then I got back on again. And again. I’m feeling good while riding with only the usual post-ride soreness. The aching and burning in my muscles that took me off my bike back in January have thankfully disappeared, slowly over time as was predicted by the physical medicine specialist. His diagnosis: muscle damage resulting from the statin drug I took to lower my cholesterol. He said it could take months to heal completely, and there could be permanent damage. I’m so thankful I had read the medication insert and was informed of all the possible side effects and stopped the medication just a few weeks into treatment. So far, it seems my muscles have recovered. I am all too familiar with the fatigue and soreness I am experiencing both during and after rides. This is what training feels like when one is not in shape and is pushing to improve. This hurt is good.

Headed out for a lunch ride.

After riding my old bike for a couple of weeks without any pain, I hopped on my new bike – the bike I bought back in January just as the pain from my muscle damage was peaking. This new bike is a sweet ride. A red and white Trek Pilot, she’s carbon fiber and three pounds lighter than my aluminum Cannondale. After one ride, I was hooked.

I do have to say I was at first reluctant about the color combination, though I was happy the white wasn’t around the drive train – white is sleek and pretty when clean, but doesn’t stay that way for long. But then there’s the red. You see, red has never been my color. When I was a kid, I was all about green or blue – never red. Like most kids growing up in the 1960s, I almost always had a bike, but never a new bike. We’d get our bikes at garage sales or the swap meet and they all seemed to be blue, usually messily painted a flat royal blue that only comes from a can of spray paint. One day my dad brought me home a white bike with pink trim. The tomboy in me was mortified. As soon as we could, we took that bike apart and painted it metallic gold. Instantly, I was one of the boys, out hopping curbs and exploring the open fields in my neighborhood that were quickly being gobbled up by apartment complex sprawl (eventually, I’d live in three out of four of those complexes built in the early 1970s). Painting that bike made it mine, and new or used, it was the coolest thing I had ever had.

My first love looked pretty much like this Le Mans.

Looking back now, I think I can actually credit that little bike with the love I have today for tinkering with my bike, cleaning it and doing some of my own maintenance. It wouldn’t be until I was fourteen and had earned enough money babysitting and mowing lawns that I would own my first new bike: a burgundy Centurion Le Mans for $149.99 plus tax, every penny I had. It came only in two colors, dark blue being the other and I was not buying a blue bike of any shade. That bike gave me freedom and continued my love affair with cycling adding the dimension of the open road. I could go so far and so fast on that bike – it was true love. Like most first loves, it would eventually be replaced, first by a moped and then a car, but I took it to college with me and reluctantly sold it only when I thought I had outgrown riding a bike. Silly me.

When I bought my Cannondale new in the summer of 1998, there was no choice in color. It was the end of the model year and I was buying the bottom of the line bike so it came only in white with black and yellow accents. I named that bike Stinger (see Mile(stones) for more on the name) and like that little gold bike from 30 years earlier, she was mine right from the start. I guess you could say she was my first grown-up love. Her colors became mine, and once adopted by Lance Armstrong’s Livestrong, white, black and yellow became trendy and I found a cool helmet to match. Together, Stinger and I have traveled enough miles to have made it across country and back – twice. That’s a lot of special memories. Letting go was hard.

I put off buying a new bike for a very long time, and had only started thinking seriously about it late last year. My plan was to do AIDS/LifeCycle on the Cannondale and retire her after one last, big event. She’s been a great bike, but like most anything else these days, bicycles have advanced by leaps and bounds due to the rapidly changing technology; she was obsolete before I even got her home in 1998. She had only eight gears in the back – the new models for 1999 were sporting nine, and just ten years later, eleven gears in the back would be introduced. My new ride is state of the art in every way and I feel it on every ride.

I didn’t really do much shopping for a bike, though I had a budget in mind and some specifics about frame material and component group. Then along came the Trek Pilot offered for a screaming deal that I couldn’t pass up. But red and white? Could I see myself on this bike? I pushed that aside and headed to the Trek store to check it out. Then, in the middle of my test ride, as I was looking down to check out the new gearing and different shifting, it dawned on me that red is the perfect color – it is the color that has come to symbolize the fight against HIV and AIDS, the color of the AIDS ribbon, the color of hope for finding a cure. At this point in time red is my color – red is the color of hope. And with that came her name: Hope.

An Indian couple walk past a 50 foot (15.24 meter) long AIDS red ribbon sand sculpture, created by Sudarshan Pattnaik on World AIDS Day in Puri, India, Monday, Dec.1, 2008. (AP Photo/Biswaranjan Rout)

This journey with AIDS/LifeCycle hasn’t turned out the way I imagined it. I imagined months of training building relationships with my San Diego teammates as we became stronger riders. I imagined riding every mile from San Francisco to Los Angeles as my way of honoring all those touched by HIV and AIDS and as a thank you to those who supported us in every way imaginable. Then I was sidelined, and week after week, as what I had imagined was clearly not what was to be, I’d get stuck in my head and all caught up in my ego. And then something would remind me that the ride is not about me. I’d see a story on facebook or meet someone living with HIV for many years and I’d be brought back to why we are riding, why we are fundraising.

My sweet new “little red sports car” isn’t about me or my unique take on a mid-life crisis; it’s about the AIDS crisis. It’s about reminding people that HIV and AIDS continue to affect millions, and in affecting just one of us, it affects us all. As diverse as this big wide world of ours is, we all have one thing in common: we’re human. No matter who we are or where we come from, we all bleed red. The blood running through us is what ties us together as human beings. Through triumph and tragedy, joy and sorrow, we share this human experience. And therein lies the hope that we will come together to find a cure for HIV and bring an end to this crisis that I have known for all of my adult life, a crisis that has taken the lives of more than 25 million men, women and children from all over the world. A crisis that must come to an end.

How I Will Remember Elizabeth Taylor

The world mourns the loss of a movie legend, an icon. Unlike my parents’ generation, I did not grow up watching Elizabeth Taylor on the big screen. I wasn’t yet born when she blossomed into a superstar on and off screen during Hollywood’s Golden Age. I have seen only a few of her movies and know little detail of her many romances other than she was married multiple times. Her brief appearance on General Hospital was big news just as I began my freshman year in college in 1981 (the same year AIDS was officially recognized by the CDC). And at that time, I remember the publicity surrounding her as more the price she paid for her fame, her life splashed across the tabloids at every grocery store checkstand. I would just look away, my heart uncomfortable with such ugliness.

More than a movie star, Elizabeth Taylor brought power and grace to the fight against HIV and AIDS in the early 1980s. She was among the first to take a stand in a climate wrought with fear and hostility. When asked about her decision to become involved, she responded, “Well, I kept seeing all these news reports on this new disease and kept asking myself why no one was doing anything. And then I realized I was just like them. I wasn’t doing anything to help.” No doubt her involvement changed the course of battle against HIV and AIDS forever. Here is a brief overview of her work as appears on her foundation’s website:

  • Miss Taylor’s work began with fundraising for an AIDS Project Los Angeles (APLA) dinner, the first major AIDS benefit ever held.  This support marked the debut of her public commitment to raising funds and awareness for AIDS.
  • In 1985, she joined with Dr. Mathilde Krim and a small group of physicians and scientists to form the American Foundation for AIDS Research (amfAR). As amfAR’s Founding National Chairman, she used her celebrity to take the issue of HIV/AIDS to the mainstream media.
  • Miss Taylor became a potent force in mobilizing the entertainment, arts and fashion communities to step up their initiatives in connection with AIDS, traveling extensively to speak at conferences, concert venues and benefit events around the globe. She testified before Congress to ensure Senate support for the Ryan White CARE Act, spoke before the National Press Club, and addressed the General Assembly at the United Nations on World AIDS Day.
  • In October 1991, Miss Taylor established The Elizabeth Taylor AIDS Foundation (ETAF). With a focus on direct services for people living with AIDS, ETAF provides funding to AIDS service organizations throughout the world to assist those living with HIV and AIDS.

Elizabeth Taylor with her Oscar following her acceptance of the Jean Hersholt Humanitarian Award in 1993.

In 1993, after nearly a decade of tireless activism and advocacy, she received an honorary Oscar, the Jean Hersholt Humanitarian Award, in recognition of her global work raising funds and awareness for HIV and AIDS. Circulated widely on the internet on the day of her death, this powerful statement is from her acceptance speech: “I call upon you to draw from the depths of your being to prove that we are a human race. To prove that our love outweighs our need to hate. That our compassion is more compelling than our need to blame. That our sensitivity to those in need is stronger than our greed. That our ability to reason overcomes our fear. And that at the end of each of our lives, we can look back and be proud that we have treated others with the kindness, dignity and respect that every human being deserves.” (Read the speech in its entirety) This is how I will remember Elizabeth Taylor: humanitarian and AIDS activist.

Elizabeth Taylor was truly one of a kind. Only one human being possessed her unique blend of beauty, power, grace and courage. And there is only one of each of us. We each have fame in our own circles, power in our own communities, icon-like clout within our own families. And each of us can affect change in the world around us; it doesn’t take superstar fame or fortune to make a difference in the lives of others. The question is, do we have the courage to live such a life?

How Many Deaths is Too Many?

I met the love of my life in the San Diego Women’s Chorus, a non-audition community chorus open to all women. I hadn’t sung in public since my sixth grade holiday program, but just short of my 40th birthday, I had found my voice and was ready to let the music flow. In SDWC, I found a diverse community of women, each singing from her heart, arms open wide welcoming me into the family.

SDWC is member of the Gay and Lesbian Association of Choruses. Every four years, GALA Choruses holds an international festival bringing thousands of GLBT singers together in song. In July of 2004, we travelled to Montreal for my first GALA festival. That year, more than 5800 singers from all over the world gathered to share our stories through music. I was giddy. I had never been surrounded by so many GLBT folks in all my life. I remember telling Carol I finally understood how my dog felt when I took her to the dog park: “They’re all like ME!

The first few days were busy for SDWC. Sandwiched between our guest appearance with the San Diego Men’s Chorus, our tech rehearsal and our own performance, we took in the performances of several other choruses. We chose one particular concert block to see two of the premiere women’s choruses perform. We expected their sets to be thoroughly enjoyable and of the highest quality, but we were not prepared for the Portland Gay Men’s Chorus to take the stage. They began their set with a simple introduction that went something like this: “We dedicate this evening’s performance to the 113 members we have lost to AIDS.” The house was silent. The chorus on stage numbered around 100; my immediate thought was they had lost an entire chorus to this tragic disease. In Portland. Not San Francisco or Los Angeles or New York City, but Portland. Throughout their moving and inspiring set, silent tears fell as I imagined members of their chorus disappearing one by one until there were no more. I asked myself, “How many deaths is too many?”

That performance was for me, the first time I fully grasped the sheer devastation of this disease – the senseless loss of lives of beautiful, talented, joyful human beings. Their voices would never again be heard in song, their laughter silenced, the comfort of their embrace just a memory. Such grief and tragedy in the loss of lives to this disease that now totals more than 36 million worldwide, about the population of California. Every 12 seconds, another person is infected with HIV. Every 16 seconds, another death from AIDS. Today, nearly 30 years after the CDC reported the first AIDS diagnosis, Carol and I are committed to making a difference in the fight to end HIV and AIDS because one more death is too many.

To read more about our commitment, visit AIDS/LifeCycle TeamReaganHarlow.

Comfort Zone

Sunny and seventy in San Diego. Sweet cycling weather – in the middle of the week. It’s out there and I’m in here sitting at the computer. A quick glance at the weather shows Saturday at 65° with a 30% chance of rain. My heart sinks at the thought of another Saturday not on my bike because of a little rain. Now I’m sitting at the computer sulking. Oh how soft I’ve become, now one of those people who is happy with the weather only when the temperature falls within my 10-degree comfort zone. I love the rain, but not on the weekend, not when I want/need to be on the road.

In my early days as a cyclist, I just rode. No matter the weather, I rode. I was overweight, out of shape and in training for my first century and every mile counted; my anal-retentive nature served me well as I logged every single recommended mile that first program.

In my defense, I was born and raised in San Diego. Cold? Snow? Heat? Humidity? Temperate is my middle name.  A few years of the cold and damp in Santa Cruz conditioned me for a time. But like getting into shape vs. getting out of shape, the fall back to my former self was rapid. Now walking the dog on a sub 60-degree evening requires gloves and a hat. Brrr.

We all have our comfort zones, with weather and other things. And we are all familiar with being sick and not feeling ourselves. Some of us have battled chronic pain or live with a lifelong illness; too many I know are battling for their lives – cancer, MS, HIV/AIDS. Come next June, the weather won’t matter. It can’t matter. The ride is set, the routes are all planned. Heat, humidity, wind, rain, dust storms – whatever Mother Nature throws at us, we’ll have to conquer. Aches, pains, upset stomach, a cold, a toothache – whatever our bodies throw at us, we’ll have to adjust to a new comfort zone. After months of training and fundraising for AIDS/LifeCycle, we’ll ride. And even on the most perfect of days, I know myself: I’ll still battle to find my comfort zone. In those moments on this particular ride, I’ll remember those battling HIV and AIDS. For them, “comfort zone” takes on a new meaning in almost every moment.

Waking Up in Your Own Bed

I’ve been blessed with good health in this life. Never spent the night in a hospital bed waking in pain or fear, wondering where I am, sleeplessness as much a part of each 24-hour turn as three measured encounters with bland, squishy food. Never traded the comfort of home for the din of machines, unfamiliar odors, eery light and being REALLY sick. Nope – I’ve been lucky. If I’ve awakened in a bed other than my own, it was out of choice.

I recently spoke with a friend who is HIV positive about the everyday struggles with his health. He counts himself fortunate to be healthy enough to work and have health benefits that cover some of the cost of his “maintenance” care. He wakes up in his own bed every morning – for now. But there are days when he is sick and can’t get out of bed. And there is the fear that this time, this bout of intestinal distress will be a turning point, the one that lands him in the hospital. This is the reality for millions of men, women and children worldwide who are fighting to win their life-or-death battle with HIV and AIDS.

Eight months from today on June 12th, Carol and I will wake up in our own bed after spending seven nights in the AIDS/LifeCycle tent city. She’ll be recovering from seven days of early mornings and long days laboring to make sure each of the cyclists has everything needed to complete the ride each day. I’ll be nursing 545 miles worth of sore muscles and longing for anything but the saddle on my bike. The journey we have signed on for to raise funds and awareness for HIV and AIDS will be over and we will have returned to the comfort of our own bed. I imagine that first night, we’ll snuggle down, look into each other’s sleepy eyes, exchange one last tale from our days on the road, share a gentle kiss, set the alarm and reach for the light – maybe taking it all a little less for granted as our heads hit our pillows.

Why a Cause?

I began cycling for a cause in 1998. A diabetes diagnosis and weighing over 200 lbs. was my motivation. Initially, I was my cause. That soon changed when I joined Team in Training and my focus shifted to finding a cure for blood cancers. I found this cause was larger than me and my individual challenges. Over time, this cause reshaped my understanding of love, community and humanity – of self and that there truly is no “other” – that the only cause is the human cause.

Each time we commit to a cause, we change the course of history. We build relationships, raise awareness, open minds and open hearts. We make connections that affect lasting change. And we can’t help but change. My cycling keeps me physically healthy; doing it for a cause keeps me spiritually healthy; doing it with incredible people keeps me emotionally healthy.

Each time I reach out for support, I am deeply touched by the people who reach back, grasping my hand, offering help in more ways than one can imagine. I am blessed to have the support of family and close friends. I don’t take that for granted; I haven’t always had such a strong and extended support system. Some people are in awe of the physical challenge or daunted by the fundraising and say, “I could never do that, but I can support you with a donation.” Others share how the cause has touched them, sometimes talking about their grief for the first time. Some want to lend their support but are not in a position to donate (in a future post, I’ll share the story of Jack Lane). I have learned to accept all of these gifts finding value in the purity of simple human interaction. The gifts of time and love and heart are priceless.

And so, I am committed to the human cause. I cannot rid the world of disease or hatred or natural disaster. These days, it only takes a few minutes watching the news or driving on the freeway to focus on the negative in this world. Those same few minutes working for a cause brings me back to all that is good in this world. We can make the world a better place – we are making the world a better place. Peace.

To read more about our cause, visit AIDS/LifeCycle TeamReaganHarlow.

Just Do Something

So much in this life is out of our control. Carol and I have both lost friends too young – to cancer, lymphoma, addiction, wreckless drivers, and AIDS. We were powerless to save our friends, but we are not powerless in honoring their memory, in making the world a little bit better in whatever way we can. We can all do something.

In 1994, Carol lost her best friend, Scott, to AIDS. That year she began her volunteer work with AIDS Walk San Diego; this past September, she completed her 17th campaign as a key member of the event staff. I joined her transportation crew in 2003. Her commitment became mine.

This year, we have decided to do more to honor Scott’s memory. For the next eight months, we’ll be preparing for AIDS/LifeCycle, raising funds and awareness for HIV and AIDS. Follow us on our journey either on facebook or here on our blog.

 

Young, bright, talented, beautiful - M. Scott Morton 1960-1994

 

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