Amazing Grace

Eight days ago, a dear friend and client of mine met his maker. It has been a long and trying eight days for me as I struggle with the many emotions I have been dealing with in response to his death. You may recall his story: He was diagnosed with HIV in 1989 and with AIDS in the 1999. When he was diagnosed with AIDS, he was told he only had 6 months to live. His sister dropped everything to take care of him at the end of his life. She quit her job so she could dedicate herself to his care. Six months turned into 12 years, and my dear client took his place with God just a few days ago.

I had visited John at the beginning of May, right after his sister told me that it looked like his suffering was coming to an end. The three of us talked for a while about life. John was constantly making jokes, even in the last days of his life. The day before he died, I went once more to see him and his sister. I had spoken to his sister that morning and she asked if I could bring them some food from the pantry. She told me that she couldn't leave the house because she feared leaving him alone. I drove down there after work that afternoon and spent some time sitting at John's bedside, watching him breathe, and talking to his family. It was the first time I had seen someone on the verge of death. He was skin and bones; his body had wasted away to practically nothing. The most he could muster up was "Hey," and then he went back to sleep. His sister began to tell me that he had been very unresponsive the day before - he wouldn't eat and wouldn't take his medications. When he called out to her and she went in his room, he would say nothing and was unable to tell her what he wanted. She told me how hard it was for her to see him like this. Above his bed was this beautiful painting of an angel. His sister told me that every time she walked into his room, she would say a quick prayer to the angel: "Please do not let me cry in front of him."

She has cared for him for 12 years. She literally dropped everything to be there for her brother. She took him to every doctor's appointment. She reminded him when to take his medications. She called the ambulance each time it became clear that he needed to be in the hospital. Every step of the way, she was there. For 12 years. Each time he had a panic attack, she was there. It was rare to see one without the other, and when I saw only her at the beginning of May, I grew concerned...that's when I knew that John's earthly life was coming to an end. The beautiful relationship between the two of them has taught me so much about God's love. She did more than just help John bear his cross; she carried it with him. Each time his suffering increased, you could see her own suffering increase ten-fold. That is true, unconditional love. That is God's love. It is a love unlike any other. A love that knows no bounds. A bond so strong that no matter how much suffering exists, that love will endure. I have never seen God's face so clearly than in this sister's love for her brother. At John's funeral, I watched as his sister kissed his casket and said goodbye. She let out one last gripping sob, and with it, she released him. It was truly beautiful.

I have been thinking so much about sickness and suffering these past couple of weeks, as we have lost four clients in 6 weeks. Sometimes, I find myself getting so angry. Why does AIDS exist? Why do we allow people to suffer? How do we stop it? Is love really enough?

I recently came across a quote by Paul Claudel: 

Jesus did not come to explain away suffering or remove it. He came to fill it with His presence. 

And this is what has allowed me to keep going, even when surrounded by such suffering. John's beautiful sister is a testament to the power of love. Even in his dying days, John was joking around. He kept telling his sister that if his funeral was not arranged exactly as he had asked, he would haunt her. That was the John we all knew and loved. Maybe his sister could not take away his suffering and she surely couldn't end his pain, but her presence, her love, and her compassion for her kin allowed for God to really be present in that suffering. 

I keep asking myself, if the loss of John has been such a struggle for me, how can I possibly work in hospice starting in August? How will I make it through? And then I am reminded of his sister and her unconditional love for John. All I can do is open myself up to God - through suffering and helping others to bear their crosses - and pray that I will be given the chance to love fully, wholly, and unconditionally much like the amazing woman I met in September did by dedicating her life to caring for her brother.

French Fries on the Ground

This is a piece I wrote for our monthly JVC Newsletter:

He walked into my office one afternoon, looking handsome in his slacks and dress shirt. We had met once before and had chatted on the phone a couple of times, as he kept me posted on the latest news in his life. Just 12 days older than me, I find I can connect with him on a different level than I can with my other clients. All he wants is to be independent; to go to college and get a degree; to go to work each day and leave smiling, knowing that he is doing what he loves. Yet, here he was - twenty-two years old and HIV positive, living with his grandparents, working part-time, longing to be back in the Army where he felt he belonged. That afternoon, though, all of his fears and longings seemed to have disappeared. He walked a little different and seemed to hold his head a little higher. When I asked him what had changed, he told me, with a huge smile, that he had moved into his own apartment and had bought a new car, after having saved since he left the Army. Excited for him, I gave him a high-five and told him how happy I was that he was happy. We chatted for a while about his life, his family and then about my life and my family. As our time together came to an end, he asked me to walk outside with him to see his new car. We turned the corner into the parking lot, and there it was: a "new" 1998 Subaru hatchback. We walked towards it and as I looked inside, he said, "Don't look at the french fries on the ground!"

The funniest sentence carried so much meaning for me. All the baggage seemed to melt away. I was no longer looking at a twenty-two year old afraid of never being his own person. I was no longer looking at a young man scared of dying. No. I was looking in the eyes of a friend who will not allow HIV to define who he is.

Working with clients my own age has been one of the biggest struggles for me this year. With each 20-something that walks into my office, the faces of my friends, cousins, and classmates flash before my eyes. I spent most of my senior year of college researching how students view HIV/AIDS, and found that many are educated about the epidemic, but few believe that they could become infected. My clients once thought that, too, until that fateful day when they walked in to receive the results of their HIV test and were told that it came back positive. The fear in their eyes when they come into my office is real. One client once asked me, "Am I going to be ok?" These new friends of mine have taught me so much and it is in their fear that I find beauty; it is in their joys that I find my biggest reward. When they realize that HIV does not have to define them, that they can define themselves - God has shown me something beautiful. Life is not about how much money you make or what people think of you. Life is about learning. Life is about the journey. Life is about realizing that we form our own paths and we define our own lives. HIV positive or HIV negative - all that matters is our love of self. That is what I learned on that day when I was told not to look at the french fries on the ground, and I am forever grateful to that twenty-two year old friend who taught me.

Unite the Fight

AIDS Walk and Ride, an annual fundraiser that benefits the agency I work for as well as other agencies that serve those living with HIV/AIDS, took place a week and a half ago. I was pretty excited about it, after having missed AIDS Walk New York for the first time in four years. I was looking forward to seeing how many people would show up and how much money would be raised. I was also curious to see how the event is run, especially when the only thing I have to compare it to is AIDS Walk New York - an event attended by tens of thousands of people and raises over $1 million dollars annually for agencies in NYC. Maybe I wasn't too pumped about having to be at the registration table at 5am, but I was excited nonetheless.

I didn't know what to expect as I drove to the area where the event would be held. I was kind of holding my breath, afraid that very few people would show up. North Carolina is a pretty conservative state and Wake County is growing more conservative as the Tea Party moves into its government. When it comes to HIV/AIDS, this state seems to have been swept up in the abstinence-only sexual education movement of the George W. Bush era. The funding necessary to save the lives of those living with HIV across this state is short. The AIDS Drug Assistance Program (ADAP), a program that assists those who are uninsured and living in poverty by providing them with the HIV medications necessary to save their lives, has a waiting list. This is something I had never heard of in NYC or in Connecticut. And now, even with a recent study stating that HIV medications not only save lives but can also help prevent the transmission of the virus, things don't seem to be changing down here. As I drove to the event before sunrise that Saturday morning, I didn't know what to expect. Part of me actually expected to see protesters like I did at PRIDE Day in Durham back in the fall. HIV/AIDS is stigmatized, as it has been for the past 30 years, and the generally conservative environment of the South makes it even more difficult to talk about the epidemic - and thus to prevent further transmission of this virus.

Cyclists began to arrive at the registration table, 89 in total. Each had registered to ride either 30, 60, or 100 miles. With each person who approached the table, I felt my heart soften a little. I do not know the stories behind each of these riders and I don't know their reasons for choosing to ride in our fundraiser. What I do know is that there was a clear passion among the crowd. As I glimpsed out at the group preparing to start their long rides, I was overcome with emotion. Team LLAMA, Team VIIV, and Team Tarhealers all stood there proudly with their race shirts. There had been a bad accident that morning on I-40 between Chapel Hill and Raleigh, so many of the team members from the Tarhealers were arriving late, as they are from UNC. It amazed me when one of the young men approached the registration table to say that the other riders could take off but the Tarhealers would wait until each of their team members arrived to start their ride. Riding together; riding in solidarity. 

A few hours later, many folks began arriving to the Children's Garden to register for the walk and to visit our festival. Things had settled down a lot after the riders left, but after a couple of hours, tons of people were arriving. People of all races, genders, sexual orientations, and ages were coming to walk for the cause. They were all coming to show their support for the fight against HIV/AIDS. I was blown away when we literally could not keep up with all the people coming to the registration table. I was baffled - amazed that hundreds of people were showing up to walk. I saw some of my clients, which made me so happy and proud. They were there to stand up for themselves and their friends, to say that HIV will not define them, and to show that they could not be stopped, that they would fight until the end. The people just kept coming, too. Every time I looked up, there were more people in line to register. Sure, not everyone had raised money to support the work of agencies like mine. But that did not matter to me. What struck me was the number of folks who had shown up; who had decided that HIV/AIDS is an issue they care about; who made up their minds to walk in solidarity with those that have been lost to AIDS and those who are living with this virus. There was this one group of people who all had a shirt on with the picture of a man on it, below which were listed the dates of his birth and his death. On the back it said, "AIDS may have taken your body, but your spirit lives on through each of us." 

That's when it became real to me. The negativity in my mind disappeared. There were no protesters there to stop us. And even if there were, it wouldn't have mattered. The political battles were put aside. All that mattered in those moments was the reason why everyone was there - to continue the fight; to show others that HIV/AIDS is a cause worth fighting for; and to walk with those living with the virus and in honor of those that have been lost. As the pair of empty shoes was brought on stage and we all paused for a moment to "Remember those lost, those living, and those we need to protect," tears began to fill my eyes. My passion was fueled even more by the hundreds of people gathered there that Saturday. It was a great reminder that there are many people willing to fight to end this epidemic, willing to keep their heads held high, even willing to open up their minds. This state may be conservative and a lack of understanding surely exists, but in those moments, none of that mattered any longer. I was proven wrong and that was the greatest thing I have learned here in Raleigh. There is hope - hope that this epidemic will come to an end and that one day, there will be no more names to add to our lists.