Open Letter to Jeff Wagner to Inspire a Song about HIV/AIDS
A few weeks ago, I was on Myspace where I have a large network of friends, some whom I know well, some who are acquaintances and many others who are musicians, artists or thinkers who have earned my respect or who have touched my life. On that day, I found a message from Jeff Wagner, a musician whose music is described as alternative/blues/folk rock. Jeff is preparing a new CD and he was asking for input from his fans and friends about what to include on his new disc. I wrote him a note asking him to write a song about HIV/AIDS.
A couple of days later, Jeff wrote me to tell me that if I could write the lyrics, he would write the music and include a song on his new CD. I was busy at the time volunteering as translator for a poetry project for a Mexican poet and friend and didn't have time to sit down to try to pen lyrics for the song. I told Jeff I would put it on my to-do list. Some folks might have let it go, but Jeff wrote me again this week to ask me to put some thoughts on paper so that he could proceed with his recording. He said if I could just write an open letter, that if lyrics didn't come easily, he would do his best to take my thoughts and go with them to create a song about HIV/AIDS so that others will know the significance of this disease in our world.
Today, I wrote Jeff the letter that follows. He is going to work with it and try to incorporate as much of what is there into his new song. I realize that I have given him quite the challenge to capture these thoughts in song. I want to share with you what I sent to Jeff and to encourage you to find your own ways to create something that brings people together on the topic of HIV/AIDS. If Jeff and I can collaborate, what can you do?
Please visit Jeff's Myspace page and listen to his music. Get to know him. He is a special soul to take my suggestion and to honor me with his efforts. By honoring me, he honors humanity and all of us living with HIV/AIDS around the world. Let us pray that inspiration fills him and creates a moving tribute to life with HIV/AIDS as it is today. Peace to you, Jeff. Many, many thanks. I hope that other musicians and artists will take your lead and lend a hand to those of us who need a nod, a hand, a hug or more.
AIDS is getting old (and so am I!) and our short attention spans have relegated it to the deep recesses of our minds...unless, like me, you are living with the virus in your blood. It has been more than 25 years since the disease was named. I have known HIV/AIDS intimately for 22 years, since it moved in and never left my body. Now, forty million people worldwide are infected and no one wants to talk about it anymore, from where we are to Singapore, from Capetown to your town.
Folks would rather talk about Paris Hilton. They would rather talk about Paris Hilton’s chihuahua. Do you know your status or do you know the latest brou-ha-ha? Bringing up AIDS is like an insult to some. It is the nasty smell in the middle of a cocktail party, the one that no one owns up to and that everyone tries to pretend isn’t really there despite the burning in our noses and eyes.
How can I tell you about AIDS so that you listen without my having to resort to the equivalent of healthcare terror? I can scare you away with photos. I can tell you about all the friends, good friends, and lovers who have left someone behind to share the stories of who they were and how they lived and died. I can tell you about how we made our own families when ours tossed us out and kept their shame instead. I can tell you about the guilt that these friends carried and how their lives were cut short and their knowledge and gifts of wisdom for younger people were snuffed out. I can tell you about the 10 year-old heads-of-households in Africa whose parents died from AIDS, trying to raise the rest of their clan. I can tell you about the indifference of a Church that just can’t break its own rules to bring out condoms for the at-risk bodies, preferring to save souls and their dogma instead.
I can tell you that we are living longer. I can tell you that the drugs are outrageously expensive and that they cause side effects that would make your Saturday hangover seem like an orgasm. I can tell you about my 18 pills with breakfast each and every morning, and the other 10 at dinner and the 6 at bedtime and the 1 when I wake up. I can tell you about watching my body lose its fat so that my face is gaunt, my legs and arms showing thin and veiny. Meanwhile, the fat is in my blood threatening my heart and depositing in the most inconvenient of places, like the buffalo hump on someone’s shoulder. Talk about a monkey on your back! I can tell you that they do not know what the long-term effects of treatment with daily, never-ending chemotherapy will be and that calling it a “cocktail” is a freaking insult. Yes, that term was borrowed from cancer treatment, but people hear it and think of a party. Some party. The drugs might kill us themselves from heart attack, stroke or diabetes.
I can tell you about the stigma that keeps many from getting tested and treated and how shame and guilt from outside contribute to the spread of this disease. If you can’t face your own mortality, how can you think about keeping someone you love or yourself safe? I can tell you about the unsuspecting wife whose husband cheats on her, how she didn’t feel well for a long time but had zero idea that she had AIDS until the lab-work came back.
I can tell you how tired I am of AIDS, from living with it, from thinking I was dying from it, from watching my world crumble because of it, from watching the developing world suffer from poverty, malnutrition, lack of water and ultimately, HIV/AIDS. I can tell you how tired I am of begging people to protect themselves when they respond by telling me to shut up and stop raining on their sunny day. I honestly can’t tell you how exhausted I am of hearing how tired the presumed uninfected are of hearing about HIV. Or of how the powerful try to keep the disenfranchised in ignorance while claiming their moral superiority will be challenged by frank discussion of sex and love in all its forms.
But I can also tell you of the gift of seeing life through temporary eyes, or of the beauty of a rainbow, or the joy of falling rain, or the dance of the hummingbird, or the ecstasy of hearing a song that makes me cry, or the splaying of a flower that takes my breath away. I can tell you that I am in love again and that each moment spent with my true one is precious: the dance in the kiss, the hands that run along the belly, the eyes-wide-open, can’t-believe-this look of love and awe and joy in that final moment of love and the safety and peace of just being with it all after the lovemaking is done. I can tell you that I am filled with grace for sharing something meaningful, filled with compassion to hear my friends talk about their lives and how it all boils down to an absolute truth for each of us. I can also tell you that my truth is unique to me and that anyone who tries to tell you where you will find your truth is full of hubris. You have to find it for yourself.
So, no, it ain’t all bad, but, despite the opening of my soul and heart and eyes to my truth, I would not want you to find your truth in HIV. Find it instead in good health and happiness and self-acceptance and all the lofty heights of human endeavor. Give...give freely, for years go by quickly and before you know it, your truth will come knocking in its own sweet time.
Talk about AIDS. Talk about AIDS. Talk about AIDS. Talk about AIDS, until we find a cure and we can talk about how AIDS used to be...but is no more.
***Update: The lyrics to Jeff Wagner's song have been posted. The title is Holding the Hand of Darkness. Please visit, read the lyrics and listen to Jeff's music on his homepage while there.
***Update 2: The song "Holding the Hand of Darkness" is now available on Jeff Wagner's myspace homepage. Please visit and listen to the song while there.
Categories: HIV AIDS HIV/AIDS music Jeff+Wagner volunteerism sharing activism disease+prevention