Caregivers

Last week, I sent out a panic email to some cycling friends - admitting that I'm really worried that I'm nowhere near ready for the 415 miles from Vermont to Maine. So this morning, Todd Fuller, Stephen Frangis, Leon Morales and I headed to the big hills of Georgia to work on our climbing skills. I have to say this was one of the most enjoyable rides I've done in a while. To cap off the day we enjoyed what I love so much about cycling - the good food, beer and conversations that follow a great day of riding.

One topic that came up today was a question about what I missed about the AIDS LifeCycle ride. It wasn't something I realized during the ride as only time away from the event brought it to life. It was a week of people being nice to each other. The organizers did a

remarkable job of bringing 2200 riders and 400+ volunteers from all over the nation, from all over the world - each with different cultural foundations, religious views, democrat, republican, gay, straight, young, young at heart, and the list goes on and on. Within 2 days, we were a community and we knew it. So what did they do to make this week something I'm counting down the days to go back? They asked us to be nice to each other and care for each other - and we did.

For the last week, I've been thinking a lot about the caregivers of the AIDS victims we have gotten to know since May. They lingered in my mind today as I sucked out the oxygen of North Georgia while I climbed and gasped for more. Oh, the mountains - the relentless challenges - they endured for their loved one.

My three cycling pals today were my caregivers - they gave me a whole day of their weekend, they didn't leave me in the dust (which they could have!) to be sure I was safe and they encouraged me for the final 415 mile venture of 2012. I have enjoyed a wonderful day of kindness and support - making it extraordinary.

To the beautiful caregivers who live behind the stories we have heard - please feel a big Facebook hug. You climbed, you didn't quit and you endured to the end. You were everything to someone and you are extraordinary. So for each of those times I look up from the bottom of an overwhelming climb - I will think of you and be inspired by you.

The Many Faces of HIV/AIDS

I was part of an Art Project called "The Many Faces of HIV / AIDS." It was created for people who feared the disease and those who were positive. The whole idea was to create a plaster face of a person who was positive. Then, during the art show, patrons were asked to feel the masks and read the bios of the faces on the wall. This was to get them used to touching someone with HIV/AIDS. You wouldn't get the disease from touching a plaster face, so if you applied it in real life, it would be the same concept. I feel people in the world need a chance to show their compassion for one another. This project was supposed to travel, but was dropped, and now the masks sit in storage in Arizona. I am looking to start this project again, and making it go. If anyone would like to help me, please contact me.
Always
Ray V.

Like a sumo wrestler on a pogo stick . . .

There are a least a few nuggets of wisdom my parents shared with me when I was younger that continue to influence me today. One nugget for me was “Education is the one and only thing that no one can ever take away from you.” If you walk into my office at Emory today, you won’t be able to look at me without seeing a picture behind me that reads “Millions watched the apple fall, but Newton asked ‘why’.” So, it’s no surprise to me and those who know me best that learning all I can about HIV/AIDS has been a big piece of this journey. Being a life-long Southerner from South Carolina and Georgia - with no deep desire to live elsewhere, I’m especially concerned about how HIV/AIDS seems to be thriving here.

I learned about an interactive HIV/AI

DS map by reading various articles on the Emory website. Showing my own stereotypical tendencies, I expected to see a big concentration in California. Instead, the Bible-belt and my beloved South jumped out like a sumo wrestler on a pogo stick. I continued to drill into this and learned that my home states of Georgia and South Carolina are on the CDC “hot list” due to the rise of new cases. In case you are curious about your area, I’ve posted some docs you can take a look at or the interactive map on-line can be found at http://www.aidsvu.org/map

During my formative college years, we watched the Challenger explode and the AIDS epidemic implode. Later, during my orientation session for the Emory Executive MBA program, we discussed a case study in which decision makers received data and risk points in the midst of pressure to move forward in spite of the data. Not knowing the full story, our class overwhelmingly said we should move forward because the data wasn’t strong enough to outweigh the pressure. Our professor then went to the next slide – showing the Challenger explosion – and said, “Well, you just killed people.” With that lesson, we were ready to learn. Equally, the advances made in managing HIV has a down side as our youth don’t see this as a threat. The result – rates are increasing and history is repeating itself.

Yes, my parents were right – education is the one thing no one can take away from us. The only thing I would add is that it doesn’t do a lot of good if it doesn’t drive action. By participating in the AIDS LifeCycle ride, it really isn’t a surprise that California did not make the top 10 list with us – they are taking this issue head-on and dealing with it.

Please help spread the word and change the map color of the South. We are all human and we are all a part of the future.

Map | AIDSVu.org

www.aidsvu.org

AIDSVu is an interactive online map depicting the HIV epidemic in the U.S.

The Rev. Dr. Robert Franke

This journey has been so touched by stigma - selective ignorance (per Jill below) - opportunities for education - and surprises.

The story I share tonight was surprising to me because it is fairly recent and a reminder of how far we've come - but yet still have to go - in the education area. The Rev. Dr. Robert Franke, a retired Central Michigan University provost and Unitarian-Universalist minister was evicted from an assisted living facility because he had HIV. His lawsuit was settled in September 2010. Yes, this happened just 2 years ago. Dr. Franke was a teacher - and still is, even though he died on December 26, 2011, a little after a year following his fight for other seniors with HIV.

http://www.youtube.com/watch?v=HcdAYL_01Qk

Jarvis

Since I skipped church this morning to ramble down GA400, I figured I best spend a little bit of the time in reflection. Sometimes the topic of the day comes so quickly that I can almost hear God saying "I thought you'd never ask." Today Jarvis filled my heart and mind, as well as his niece - who has had a huge impact on my desire to raise awareness. I'll call his niece "Jill" for the purpose of this sharing.

Jill and I met at Emory and met for lunch so she could share her story with me. She told me about her uncle, who she adored but had not really talked with him about his HIV-positive status. She described Jarvis as someone who has never felt true love but enjoys Luther Vandross and believed God put angels on earth. This 1000 mile journey idea tweaked curiosity within her - and here's where her journey took her, in Jill's words:

"I've started this email a million times since the AIDS awareness program at St. Mark. I was really impressed by the wealth of knowledge at the meeting from both the presenter as well as some audience members. However, what the doctor who was sitting at the back table said (I’m sorry, I didn't get her name) left an indelible impression upon me. She gave a very accurate account of the mis-education, ignorance and the stigmatization that surrounds HIV/AIDS and its many victims in the African American community.

When I left the program that night I called my uncle Jarvis to tell him about it. He was impressed and happy to hear about people who are actively trying to make a difference in the lives of the suffering and in the lives of the ones who are destined to suffer from this disease, and I'm not just speaking about HIV/AIDS. I'm also talking about the disease of selective ignorance. On that night I learned just how much I subscribed to this human failing. I don't mind telling you that I have never felt more saddened and ashamed in my life. My uncle told me things that night that he has never told me and has yet to tell many in our family, although I'm quite sure my grandmother, mother and aunts must have figured out more than the little bit he has told them.

My uncle told me that he was glad that I am actively seeking knowledge about his illness instead of continuing to hide my head in the sand as I had been doing. You see, in my family, even though we knew my uncle was sick we didn't overly dwell on his illness. We pretty much acted as well as treated him as if what he had was a little more than a common cold. To us, it was an illness we knew would never go away. But it was one that, until we were forced to, we really didn't have to "deal with". To us, it was more of a mind over matter kind of thing and we really didn't talk about it too much and we didn't want to know all of the bad things that possibly lay ahead for my uncle (selective ignorance). My uncle knew that this was our way of "coping" so he didn't intrude. He also didn't bother to be totally honest with us and he didn't bother to share himself with us. He kept a lot of things to himself and only told us what he thought we could handle. It broke my heart to hear him tell me this and it devastated me to know that it is true. That night, my uncle said to me"now that you truly want to know and seem to be more concerned about what I'm going through I can be honest with you". He told me that he contracted HIV in 1994 and that he has been living with full-blown AIDS for the last four months. He only told us about it five years ago and led us to believe that that was when he contracted HIV. He said he never told us about what was really going on with him because he knew that we really didn't want to know. As a testament to this statement, he told me that he has been in and out of the hospital with various ailments from renal failure to heart problems and no one besides my grandparents, aunts and mother knew about it. At my uncle's request, they kept it to themselves. He also said they never asked him anything beyond the basics of what was going on with him health wise. He said that they just tell him that "everything is going to be alright and God will pull him through".

I knew that some days he wouldn't be feeling well but I had no idea of just how bad it was. When I would call to talk with him my grandparents would just tell me "today is not one of his good days" and wouldn't give him the phone. I am so sorry but I had no idea. My uncle told me that he is facing his mortality and that he is ready. He told me that he is preparing so that my grandparents will be okay. I absolutely hated having this conversation with my uncle but I hate even more the many conversations I would not allow him to have with me before. This is truly devastating.

I don't know if any of this is what you were looking for in the way of stories of how HIV/AIDS is affecting lives. But I can tell you that my brief interaction with you has changed mine. Thanks for helping to facilitate the open communication I was able to have with my uncle before it was too late. I don't know how much time we have left with him but I thank God that the time will be quality."

To Jill, I would say "Because of you, Jarvis has felt true love now." God bless you both.

http://www.youtube.com/watch?v=xm4wAmsGyN0

One Little Sentence

Today I struggled with all of the logistics for the New England ride, which will begin in 34 days. So, I'm official now with the flight to Burlington and from Portland booked, the pre and post ride hotel reservations booked and the necessary "oh my gosh, I'm out of shape now" anxiety meltdown completed. Then I made a phone call to the ride director today and he told me, "It's hot here in August - usually 80 degrees and sometimes 90!" I cracked up laughing - and suddenly felt ready to get down to the business of training. I can't WAIT to ride in that cool weather after our 100+ days!!

It's amazing how one innocent sentence can change someone's perspective.

At 6am tomorrow, I'll be joining some of my Saint Mark cycling pals on GA400 for the Hospitality Highway ride. It's time to get serious again!

It Takes A Lot!

Many of you have asked what it took to get 2200 cyclists from SF to LA. Well, a lot. Here's a few stats for those who are interested:
Eggs = 44,600
Pounds of pasta = 1,200
Gallons of water = 18,800
Packets of "butt balm" = 18,000

Portable toilets = 1,055 (and I don't miss a single one of them!!)

Participant stats:
Oldest participant = 83
Youngest participant = 18
Number of states represented = 44
Number of countries represented = 16
Average calories burned daily by each participant = 3,410
Funds raised = $13 million
Volunteers = about 600

And I can't wait for next year! (Except for the porta-potties). If any of you want to ride or serve as a volunteer, I can help you get connected - except I can't get you excused from the porta-potties - sorry. I wonder if you can get PTSD from a week of porta-potties?