Advent of Hope for World AIDS Day

The night I stumbled across my first World AIDS Day observation in our national’s capital, AIDS was the last topic I wanted to think about but the only one on my mind since my brother and I had spent much of the cross-country flight working hard to make the end-of-life choices that had to be made now that his fight with HIV was rapidly coming to an end. Yet even that dark World AIDS Day was bracketed in hope; it flickered in the last-minute (late for our plane) urgency with which Bret gathered up pamphlets to educate his east coast friends about HIV and in the candlelight vigil we happened upon 24 hours later along the White House lawn.

In the two decades since, that spark of hope has ignited into a beacon of optimism for 34 million people infected with HIV and countless more who love and care and fight for them. Even as scientists strive to contain a constantly evolving virus, prevention messages and treatment delivery methods are now customized to address varying cultural and social needs. New focus on HIV stigma now shines a light on human rights violations, like ending violence against women, that challenge individuals and countries alike to consider the worth and inherent dignity of every human being. This year, the December 1^st World AIDS Day falls on the first day of Advent and while I continue to mourn the loss of my brother and millions more to AIDS, I rejoice in the hope embodied in the coming of our Savior and our joining together to build God’s healing kingdom here on earth.

A Prayer for World AIDS Day - Day 40, by The Rev. John Culp, courtesy of the UM Global AIDS Fund

"O God of Enduring Hope, never-ending love and everlasting life. We give You thanks for the faith, hope and love that sustain us in our work for healing, justice and liberation.

O God, who will break the silence about this disease? The silence of stigma, the silence of denial, the silence of fear, the silence of ignorance.

O God, when will the silence end? God, grant us the courage to see, to hear, to feel and to act in powerful meaningful ways.

O God of Healing, we remember all those who are living with HIV and AIDS and their families and caregivers. Those who grasp firmly and hopefully to every living moment.

O God of Hope, we remember all those who died: Those whose pain was so great that death would not come soon enough.

O God of Compassion, we remember all those who mourn:
grieving parents, orphans and vulnerable children, friends and entire communities.

O God of Justice, we stand with countless others who work to tear down the barriers of poverty and prejudice and break the bonds of silence, fear and discrimination. Be with those who must make their home on the edge of society because of the prejudice and fear of others.

O God, let the truth be known that HIV and AIDS is not a punishment from Thee, but a disease such as cancer, tuberculosis or malaria. Let our Faith compel us to accept that all persons, including those who are living with HIV and AIDS, are made in the image of God and are children of God.

O God, be with those who care for them; listen to them, love them; watch and wait with them. Give us the strength to stand alongside, as you do.

O God, you are present in all places and at all times. We give thanks for all those in caring professions and in medical research. We pray for relief organizations, education workers, medical teams, pharmaceutical companies and for an end to the injustice that makes human life seem worthless.

Remind us that we are in this together: We cannot walk away and we dare not pretend that this is not about us. We all suffer. Help us to work and live as ONE with our brothers and sisters across the globe.

Merciful God, we bring our grief and concern to this gathering. We bring also our thanksgiving and hope for the future."

A Side Trip

Every mile of this journey to end AIDS has been a leap of faith, from where I ride to how I’ll manage the fundraising, route and logistics. I’ve learned to listen for inspiration which always comes and never fails to lead me, with you, exactly where we need to be to move farther down this road and yet I’ve limited myself to a bicycle and this one cause. Fate had a side trip in mind.

In 18 days I’ll clip in again to pedal 180 miles in Obliteride, the first cycling fundraiser put on by the Fred Hutch nonprofit organization to benefit innovative research at the Fred Hutchinson Cancer Research Center, right here in Seattle. I like to think they got this event idea from our friends at Emory Vaccine Center with whom the Hutch partners to lead the world in advancing HIV vaccine research through their networked HIV vaccine trial clinics.

What does cancer research have to do with ending AIDS? Plenty! Many of the same treatments yielding successful results in cancer patients are having a similar positive effect on HIV. People infected with HIV become more susceptible to cancers as the virus begins to compromise their immune system and the HIV+ person with cancer has unique treatment needs.

It was in the middle of an AIDS ride that my Puget Sound Riders teammate, Jon, got word his sister’s cancer had returned. She passed within the year. I remember how scary it was to pray with my good friends Barb and Ernie when their young son was diagnosed with Ewing’s Sarcoma, fought through it and is now a thriving college student yet still checks in to ensure the cancer hasn’t returned. Ernie picked up road biking for the first time this spring and has made the Obliteride his first cycling fundraiser.  I’m honored to join these two men and the many cycling warriors and volunteers donating their time and energy to bridge the federal funding gap and help sustain cancer cure research at the Hutch.

A side trip may be unplanned and cause you to reach a little deeper in your pocket but sometimes a side trip turns into a shortcut and in my experience a side trip always enhances the journey. I hope you’ll join me in supporting this little side trip and together, by faith and with great hope, we’ll see where this road will lead us.

The Finish Line

Saturday morning dawned warm and muggy as roughly 150 cyclists left Emory University on the 11^th annual AIDS Vaccine 200. Almost immediately, our Puget Sound Riders team of Jon, Mary and I took an unexpected detour along the narrow winding roads of a nearby neighborhood. Jon powered up a sudden steep hill that stopped Mary when her chain jammed so I was riding solo when I saw it and had to stop. There on a fresh-cut lawn were 3 lounge chairs looking precisely as the scene I often describe of our 3 brothers, Bret, Peter, and Donald David, gathering again in their heavenly perch to watch the annual spectacle of siblings sweating it out to continue their journey to end AIDS.

The worthwhile detour added a few to our 100 mile day but we managed to stay dry and arrive at the Rock Eagle overnight in time for a quick shower before dinner. Tomorrow’s forecast was more ominous.

We got an early morning start to our return trip with foreboding clouds on the horizon. What’s a little rain for a Puget Sound Rider? Most of our training involves rain gear after all but this was no Seattle rain. This was what my Texas roots knew to be a gully-washer! Jon and I pulled into the first rest stop as lightening cracked over the field. We waited out the worst of it in a picnic shelter but soon after pedaling on, the deluge was so fierce cyclists were piled into every available crew vehicle and ferried over washed out roads to the next shelter where Emory grad students handed outfrozen bananas in a nod to the critical role of Yerkes’ primates in the quest for an HIV vaccine.

We rolled on at the next weather gap and passed Dr. Harriet Robinson, world renowned HIV vaccine scientist, standing under an umbrella at the corner, waving and thanking every cyclist passing by. A flat tire and 50 miles later, the storm began to bear down in earnest. My feet were floating in my shoes but I was warm and making progress as I slowed to stop at the intersection across from the afternoon rest stop and was startled by the loud simultaneously thunder clap and lightening flash as my foot hit the ground. Crossing the road to meet my team, I knew this was the end of our cycling day. 

On the long drive to the finish line, sitting on a towel in the back seat of a crew vehicle, I wondered why it’s so hard for me not to finish. An Emory University film crew interviewed our team at the post-ride celebration. When asked if I thought an HIV vaccine would ever become widely available, I blurted out an enthusiastic “yes” without missing a beat. What you won’t see on film is the vision I had at that moment of those 3 chairs and the sudden realization that everyone doesn’t get to reach the finish line. An HIV vaccine and AIDS cure might not happen in my lifetime but the end of AIDS will come, thanks to the contributions of each one traveling this road.

With gratitude for every person who supported the 2013 AIDS Vaccine 200 by contributing $255,000 for HIV vaccine research. And the angels rejoiced.

Ready, Set...

Most days in my cycling calendar are filled with thoughts of those who could have benefited, do and will take advantage of HIV/AIDS services, vaccine and cure research for which I ride and of each generous contributor to this annual journey. Today, however, another group is top o' mind.

Immediately after publishing this post, I'll put in a full day at the office finishing the presentation due mere hours after returning home. Between meetings, I'll check off and add to my packing list then my evening will be spent surrounded in spandex, bike gear, sleeping bag (don't forget the pillow!), sunscreen, ibuprofen and where did I put that box of 2 gallon ziplock bags?!

On this packing day before yet another AIDS ride, my thoughts are full of others who know this dance all too well, including my sister Tammie who technically titled this post as it's her favorite means of moving a crowd from one fun event to the next and got me hooked on this bicycle thing in the first place. She is but one of hundreds of people I know (and thousands more I never met) who dedicated months to training and fundraising to agonize over the logistics of getting bike and unusual vacation gear to the starting line. What will get me through this day (as it always does) is the memory and complete confidence that I will see you soon (in person or spirit) with a smile on your face, ready to ride!

Farther On

Last month I shared this message with cherished supporters the old fashioned way, with gratitude to my dear mother-in-law who always includes a book of stamps with her donation check. Posted here to my equally treasured sponsors who prefer virtual communication and with pictures and hyperlinks to kick things up a notch :)

“But the angels are older
They can see that the sun's setting fast
They look over my shoulder
At the vision of paradise contained in the light of the past
And they lay down behind me
To sleep beside the road till the morning has come
Where they know they will find me
With my maps and my faith in the distance
Moving farther on”

-          Jackson Browne, “Farther On”

 
Hope is now tangible. Emory Vaccine Center beneficiaries of our 2012 AIDS ride bubbled over with excitement when speaking of promising results in their research to vaccine against HIV and stop the virus  HIV-fighting drugs had reversed the presence of HIV in a newborn, securing for her a life no longer at risk of AIDS. Yes, hope is alive after a long, dark winter. Even so, as the darkest day of this past winter drew near, I lost it, literally and figuratively.

 The silver cuff adorned my wrist each day and night for more than 15 years as a visible expression to me and the world of my commitment to fight HIV (as engraved) “until there’s a cure.” AIDS hasn’t been cured so what was the meaning in this? Was it permission to retire to my garden - yield the battle to those better equipped to make the mega-impact needed to kick this beast? …Not getting any younger… Tired... No fonder of asking friends, let alone strangers for money. It was too easy to take the bait so I released my motivation, confirmed by the absence of a scuffed up silver bracelet.

Yet I wasn’t relieved; I was devastated, not because I’d lost a sentimental memento but because its absence was premature. I long for the day this bracelet comes off for good, when HIV no longer ravages the world and bikes are ridden solely for pleasure but that day hadn’t come. The 2012 CDC fact sheet: New HIV Infections in the United States confirms that HIV infection rates from 2007-2010 changed little from the previous decade. Treatments have successfully evolved to extend lives at a cost not yet fully realized. Holes in the dike have been sufficiently plugged.  Now it’s time to finish the dam.

There’s no end to the number of worthy causes pulling at heartstrings and pocketbooks, and escape for me is nothing more than a temporary state of denial. Ten days after its disappearance, my bracelet turned up on the bottom of a laundry pile. I dropped to my knees at the sight of it, filled with the knowledge there would be more miles to ride, more money to raise, more hearts to open and heal, until there’s a cure.

This May I’ll return with the Puget Sound Riders to spend a weekend cycling 200 miles through Georgia in support of the fine, innovative HIV/AIDS research at Emory University through the AIDS Vaccine 200. My gratitude for your contribution to this effort extends far beyond mere words. It’s as energizing as a good workout, as inspirational as a good book, and all the motivation necessary to move me farther on.

Thank you for your commitment to end AIDS and bring hope to the journey.

In Memory

I miss you.

Today I rode past your house. The last place we reminisced about our itinerant childhood, shared a laugh over Seinfeld, talked of fear and finally surrender. The place robbed of the most precious things of your life and yet so full of you.

Past your house, I rode on. Our work not yet done. I am surrounded by your spirit in the memories of those you touched and in the lives of those who work so tirelessly to ensure your life and those of other brothers, sisters, mothers and friends were not cut short in vain.


Your creativity and artistic eye peek out at me from my daughter, our youngest brother carries on your style, the older one and your nephew have challenged me onto roller coasters, intermediate slopes and careening down a mountain at 45 mph (motor-free). I am grateful you remain a constant in my life.

But today, I miss you.

Momentum

This week's flurry of HIV/AIDS research news took me back to the top of a long, hot climb through the Catskills. "Cure" talk contains increasingly more hopeful nuggets, even the bees are taking some credit. Things are looking up on the way to the top...

Upon arrival, your feet hit the ground long enough to wipe your brow and catch your breath. At that moment in my memory I heard the exasperated groan of my young (and exhausted) companion who had also caught a glimpse, not of the screaming downhill at our feet, but at the even higher hill to climb on the far side of it...

In the same week, the National Institute of Health (NIH) put the brakes on the largest, most recent HIV vaccine trial and sequester cuts lead to $1.6 billion in unfunded biomedical research grants, threatening to close HIV/AID research labs across the country and instantly set back progress two or more years.

"That hill? No problem," I tell my young friend, "You can pedal almost to the top on momentum alone!"  A little extra work on the downhill spin makes that uphill journey shorter and far less painful.

We may only inject a few thousand dollars at a time toward ending AIDS and easing its impact on the world but we do it every year and it always makes a difference. Emory University may receive less research funding in 2013 but the Emory Vaccine Center can count on the money we raise this month in the AIDS Vaccine 200 to keep their labs open through the downturn. Research cuts are forcing an abrupt end to the cutting-edge AIDS research by the George Mason University lab we've supported the last 4 years. Dr. Yuntao Wu's AIDS research has momentum and the $7,369 raised by last fall's Stealth Ride is seeding a grassroots effort to keep his lab open until NIH funding can be reinstated.

Thank YOU for helping to maintain the momentum necessary for the long haul journey of ending AIDS by donating a little this year, and every year, until there's a cure.

Donate to the AIDS Vaccine 200 benefiting Emory Vaccine Center.

Donate to Dr. Yuntao Wu's AIDS research at George Mason University