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Experience AIDS/LifeCycle 2 (2003)

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Danelle Darrel Diane Roland Tien


Darrel's Journal

Thursday, May 29

In just a very few days, I will join over 1,000 other cyclists in a journey down the coast of California, and toward the end of AIDS. Together, with hundreds of other volunteers supporting us, we will raise funds and awareness in the fight against HIV/AIDS. We participate in this event for many different, but similar reasons. Some ride because, like me they carry the disease in their bodies. Many ride because they lost someone they loved to AIDS, for others, a friend or acquaintance. All of us have been touched by the disease in some way. When I first tested positive for the HIV virus in 1984 at the age of 31, I understood that my chances for survival were slim. Each time I looked into the young eyes of another sick and dying friend, I could see my own future. I got very used to death, or at least I thought so.

In the years that followed, I did what I was told I needed to do, in order to prolong my life. I was fortunate to have very good health insurance, so I could afford the care and treatment that I would require. I tried to improve my health with diet and exercise; I stopped bad habits like smoking and drinking, and most of all I took the medicine that was prescribed to me. It hasn’t been easy, living with the disease, and it has been made all the more difficult by the side effects of these very toxic medicines. For years I suffered with debilitating diarrhea, which eventually could only be controlled by daily doses of Tincture of Opium. I have also permanently lost some feeling in my extremities due to neuropathy caused by one of the medications. I assume that it goes without saying, that I am one of the lucky ones, for I am still here, 18 years later.

Last year when I first heard about the AIDS/LifeCycle event, I was happy to be able to participate in an event that would raise funds in the fight against AIDS and would also challenge me in a way that I had never attempted before. I have never been very athletic, and I hadn’t been on a bicycle since I was 12 years old. I had a little over 8 weeks to buy a bicycle, solicit $2,500 in donations, and prepare to do a 585-mile ride. I will say right now, that I did it! I did the training I needed to do, and my generous, compassionate friends gave over $6,000 to the San Francisco AIDS Foundation. I rode every inch of the route to Los Angeles, and I never stopped on any hill, both of which were personal goals.

The biggest challenge I was to face during last year’s ride came as quite a surprise to me. I discovered as I trained with this remarkable group of people, that I had never been able to grieve the loss of all those friends, so many years ago. All of a sudden when I looked into the faces of my new friends, many of them in their early thirties, I began seeing the faces of old friends, long gone. Every training ride found me more and more emotional; soon it was rare not to find me crying, grieving. Along with the sadness, there was hope. I could also see hope in the faces of my new friends. Their future looks so much brighter than ours did, 18 years ago. The AIDS/LifeCycle event has proven to be a powerful medicine in its own right. Because of my experiences last year, and the group of wonderful friends I have met, my health has improved measurably.

This year, I have been training since December, and I feel like the old pro. The pace of preparation is much slower than last year, but the excitement level is just as high. I can hardly wait to find myself back on the highways to Los Angeles, surrounded by warm caring human beings. Throughout the year, the event was never far from my thoughts. It has been a constant reminder to me, that even in these troubled times, people can come together in a very powerful and effective way, to help make the world a better place.

Well, that’s a little bit about how I got here, and I hope to be able to share with you just how special this event is during the ride, with my journal entries. For now, its back to packing the gear bag and day dreaming about the exciting adventure that continues June 8th.

Day 1 (Sunday, June 8)

Day One. I’m sitting in the Media Relations tent listening to the San Francisco Gay Men’s Chorus singing in the big tent as part of the evening’s entertainment. I’m trying to fit the journal entry in after a long amazing day traveling from San Francisco to our camp in Santa Cruz. My friend Sally, who hopes to someday ride in the AIDS/LifeCycle event, was kind enough to get out of bed at 3:30 am on this typical cold, foggy, San Francisco morning in order to give me and my friend Jeff Smith a ride to USF for the opening ceremonies and ride out. We gathered in the baseball field at 6 am and rode out at 6:30. It was really special riding with Jeff again, since we had both done our first ride last year in the inaugural AIDS/LifeCycle event. I mention Jeff because he rode a good part of lasts years event with a painful knee injury that occurred early in the week, and had spent many hours training this year in order to strengthen the knee and give him the best chance possible to once again complete every mile.

Two weeks ago, after getting his bike out of the shop, he reinjured the knee because the bike mechanics had lowered his saddle, so they could put it on their service rack, and had failed to return it to the correct position. Jeff was devastated to have his plans of riding possibly ruined because of this oversight. Fortunately, Jeff went to several specialists that treated his injury and gave him permission to ride, if only until the pain was too great. This is a pretty long lead in to what happened early in the ride this morning. As Jeff was just approaching the first pit stop on a steep decent, he hit a patch of gravel and lost control of the bike. Jeff sustained some significant injuries including a broken clavicle, and will not be able to ride.

This only affects how Jeff will contribute to the ride. One of the beautiful things about this event is that failure is really not an option. In the positive supporting environment that we carry with us down the California coast, we know that it’s about fighting HIV/AIDS, and it’s about doing your personal best. Riders come in many different flavors. Young, old, men, women, top athletes, and well those of us who don’t spend all that much time on the bike. Everyone is encouraged to test himself or herself by doing the absolute best they can. On every hilltop there are other riders to cheer you on your accomplishment, around every corner there are friends, neighbors and other well-wishers cheering you on. Even the very last rider into camp at night is met with smiling faces and cheers of support. How can failure be a possibility in this environment? It can’t.
Jeff will finish this ride; he will support us all in some fashion with his arm in a sling and his heart in the right place. Jeff, and every other person on this event are success’s, they are doing the best they can, and they along with all of you at home are making a significant difference in the fight against AIDS.

Day 2 (Monday, June 9)

What a glorious day. Compared to yesterday’s serious climbs over a 96-mile route, today’s 106 miles were flat as a pancake.

I got on the route shortly after it opened at 6:45 am, and pulled into camp at 6:30 this evening. Last year our camp was in Watsonville, not Santa Cruz, but other than the mileage we covered making up that difference, the route was the same. Last year I sped through the day trying to ensure that I would meet my primary goal for the ride; I wanted to ride every inch of the route to Los Angeles. Because I had never tested myself in this way before, and because I really had no idea how long it would take me to complete each day’s mileage, I hurried through the rest and lunch stops. I also passed by many opportunities to enjoy the journey as I pressed on to camp each day. In hindsight that was a mistake and I made my primary goal this year to experience as much of the journey as I could.

So today, just outside of Moss Landing I stopped at the vegetable stand that sells deep fried artichokes and tried them for the very first time. Last year I had seen a group of riders there, and had heard the stories about how good they were, but I had opted to ride past. I’m glad I stopped.

I also bought the mysterious brown Popsicle made from some fruit I had never heard of, from the Hispanic vendor and his cart in the parking lot of a Mission. I skinny-dipped in the river under the green bridge and I enjoyed a cookie from the woman dressed as a girl scout (she had been baking cookies for 3 months and had 1500 of them to give to riders, she also stood at the top of that hill from 11 am until the last rider had passed).

I high-fived children alongside the road, and gave many of them Mardi gras beads that I carry with me. I spent a lot more time than usual at the rest and lunch stops, visiting with friends and appreciating the incredible effort put into designing themes for each stop, by the amazing volunteers who staff them, year after year. Today I experienced another side of the AIDS/LifeCycle ride, one in which I was able to more fully appreciate the creativity and beauty brought forth by this amazing group of people.

Day 3 (Tuesday, June 10)

What a day! Having done the ride last year, and having had no real problem making it up the infamous “Quadbuster” hill, I started the day with very little anxiety about being able to complete the 77 mile route. I started strong, and felt good, but soon my energy began to drain as we rode against some moderate head winds. By the time we began to climb the Quadbuster I was tired and ended up having to stop and rest twice during the climb. During the rest of the ride, we were continually challenged by the head winds that made even the down hill runs require some help from the pedals. Yes, this ride is challenging, it wouldn’t be special if it didn’t test people in many ways.

Another way I was tested today was on an emotional level. As I struggled against the wind and the hills, I thought of the 18 years that I have lived with this disease, and of my friends who have lost their battle with AIDS. As my body grew more and more tired, I began to feel a great sadness over the toll this disease has taken on so many people near and dear to me.

I spent most of the day feeling sad, and it was compounded upon my return to the camp when one of the volunteers handed me and the other riders hand- written notes from school children in the San Francisco area. I glanced at the first line as I parked my bike and immediately broke into tears. I waited until I got to my tent to read the rest of it. The note was from an 11-year-old boy named Angel, and he said how impressed he was that we could ride our bicycles so far, and how proud he was that people are trying to make AIDS go away by doing something like this. As you might suspect I shed some more tears there in the tent, but I did feel better. Here was a young man thinking about what we were doing and taking the time to write, maybe just maybe he will be able to remember this, as he grows older and if still needed, help in the fight himself. And maybe, just maybe he will remain aware and avoid getting the disease himself. After all, education is our only weapon at the moment. Well, I have got to get some food and rest for tomorrow is another 100 mile day, so I will close by saying thank you for taking the time to read these journals and support this event. Maybe, just maybe, together we can bring an end to this pandemic.

Day 4 (Wednesday, June 11)

100.7 miles, our third century ride in four days! Lots of folks got in two consecutive days of training in preparation for the event, but now after four days they are really starting to feel the accumulated stress of this much exercise. I am still injury-free and hope to remain so, as I did last year. I believe that my riding style can really be summed up as being a moderate, consistent pace, saving some reserves of energy for the unexpected hills and other challenges. I also try to stretch often, since my hamstrings can get really tight.

Riders who are injured are able to access sports medicine, chiropractic, and massage services, all of which are staffed by amazing volunteers working tirelessly keeping the people that can ride doing so. Of course if a rider is so stressed that the medical personal feel that their health would be in jeopardy, they are pulled from the ride until their condition changes.

My friend Jeff, who I mentioned on Day One (the one who was injured), has really done a great job of making the most of his situation. He rises early with everyone else and greets us all as we leave camp. Later in the day he can be found at Rest Stop 4, his arm in a sling cheering riders on. It’s an amazing community filled with extraordinary individuals and groups.

One of the more visible groups is the Gutterbunnies. They are a group of cyclists who participate in these AIDS fundraising bike rides, primarily the AIDS/LifeCycle event. They can be identified by their brightly colored jerseys and big bunny ears on their bike helmets.

Another group that truly is the heart of the AIDS/LifeCycle event is the Positive Pedalers. Positive Pedalers are persons living with HIV/AIDS who choose to identify as HIV+, often by wearing the group’s jersey and/or attaching a small orange flag to the back of their bicycle. They traditionally open the event by riding out first, and are the first ones to ride in at closing ceremonies. They represent hope, courage, and the willingness to do whatever is required until a cure is found. I am very proud to be a Poz Ped, and a Gutterbunny.

Day 5 (Thursday, June 12)

55 some-odd miles, who really cares anyway? Trust me, it’s a long, long way with a lot of hills. I’m still on track, plugging away at my consistent, moderate pace. It’s not a race, and like I mentioned before, I want to experience the journey as much as possible.

Everyone was excited about the small mileage today and excitement faded as we encountered one difficult hill after another. The weather has also let us down a bit. June in California is predictably warm and sunny, this year however we are riding in anything but sunshine. The days have consistently been cool, if not cold and damp. That can be welcome relief while climbing hills, but it does get a little depressing having to wear many layers of clothing.

I had a very special moment today, one of those things that will keep me coming back year after year. As I was climbing one of those nasty hills, a young man cycled up along side of me. He said, “I finally caught up with you. You probably don’t remember me, but my name is Jamie and we met on a training ride in January.”

I did remember meeting him; in fact he just accidentally bumped into our training ride in Fairfax while he was out riding his bike by himself. He asked who we were and what we were doing. I explained that we were training for this event and shared my excitement about doing the event as an HIV+ man. I asked him to join our training ride, which he did.

Jamie continued by saying, “I don’t know anyone who has HIV/AIDS and hadn’t really given it much thought, but after listening to your story, and hearing about this event, I decided to join. You are the reason I am here.”

Well, you can imagine that was a powerful moment for me, and now imagine that a similar story is associated with the over 1,000 other cyclists.

This is powerful, magical stuff.

Today was also the talent show night, a camp favorite. I gathered with a large group of friends under the big tent and we were treated to an amazing range of performances. Every year is blessed with serious artists, and some other folks whose singing should be confined to the shower. A good time was had by all.

Day 6 (Friday, June 13)

90 miles, and my favorite day of the seven. When we got up in Lompoc, the weather was horrible, in fact I went and ate breakfast and then went back to bed for about ½ hour to wait until the sun came up. The forecast called for a high of 66 and cloudy skies.

As we worked our way toward the ocean, the sun finally broke through and the overcast skies cleared. It was simply a glorious ride down the coast to our camp in Ventura. I felt strong and rode a little faster than I normally do because I wanted to get into camp early enough to make these journal entries (we have had some technical difficulties here). The day was filled with people alongside the road cheering us on, and others looking in amusement as a very colorful group of people with bunny ears, pinwheels, Viking horns, etc. attached to their helmets went past.

One highlight of the day was the “Paradise Pit Stop,” an unofficial pit stop in Santa Barbara. I’m not sure who the kind folks were that put this together, but they should receive an award. They had about six different flavors of ice cream, candy bars, soda, chips, and all sorts of junk food. Now, maybe you have to be eating protein bars for 6 days before you can become as truly excited as I was over an ice cream cone, but let me tell you I was in heaven!

I’m about to go to dinner, as the camp news is about to begin. I’m a little sad to be doing so, because tonight it begins to really sink in, that this is over tomorrow. In a very short time tomorrow, we will find ourselves in the arms of family and friends and giving tearful goodbyes to friends we will not see again until next year, when the journey continues. And those of us who are lucky enough and smart enough will carry the spirit of ALC with us throughout the year.