“You Are Not Alone—God Calls You to Serve”

From the President

Jesse Milan, Esq.

Dear Friends:

Jessie Milan Along with you I was one of hundreds of volunteers at the display of the AIDS Memorial Quilt in Washington D.C. While I was walking along the narrow walkways between the sections, and while I was standing guard over my assigned quadrant (dutifully helping the mourners and responding to the questions of the curious), I kept hearing these words by Michael Jackson— You are not alone. I am here with you. Though we are far apart. You are always in my heart. You are not alone—in my head.

I heard it when I visited the panel of my late partner, George, whose panel was at the far end by the Washington Monument with those who died early in the epidemic. And I heard it while looking for the panel of a friend’s son near the Capitol end of the Mall where the panels of the more recently departed were located. And I heard those words each time I looked out on the sea of faces standing over the Quilt. I found myself wanting to walk up to each one of them and say, “You are not alone.”

In the weeks since, I have felt blessed by the renewed knowledge that I am not alone in this epidemic. But I chose this passage because the AIDS crisis has been defined by great loneliness, personal isolation and loss.

We, who do HIV education, can see its beginnings in the faces of those we talk to. We can literally see people catalog in their heads the risk behaviors they have engaged in. We can see others catalog the names of friends or family members whose risk behaviors they are concerned about. You can see their fear. We can read in their faces their concern. “What should I do?” “Where should I go?” “Who can I trust?”

Decision to be Tested

The decision to be tested is most certainly a lonely one. The faces of those waiting for HIV test results are easy to identify. They are the most lonely, the most scared. This is why many of us in the AIDS service community are so concerned about the new HIV home testing kit now available for consumers everywhere.

A home pregnancy test may help promote immediate decision making, but the new home HIV test will only foster, if not ensure, the isolation of people living with HIV. To suddenly discover, even in the privacy of your own home, that you have a life threatening illness is a truly awful thing. But there will be no shoulder to cry on. No trained counselor to monitor your response and to personally comfort you or direct you to services in your community. No person to look you in the eye to say, “Don’t worry. You are not alone.” Do not be surprised if suicides increase due to the HIV home testing kit.

Issues of Mortality

For those persons, isolation from the mainstream forces morality and mortality to merge. For persons with HIV/AIDS, the merger can be just as intense. “Why me?” “Does God care about me?” For all people who bear those questions, the intensity is not different, be they the wife of a hemophiliac, or a teenage prostitute.

If you, like me, are a person living with HIV disease, you know that isolation hovers over our lives like a pall. You know that our greatest fear is being sick and dying alone. No one with breast cancer or a heart condition wants to live their final days alone either.

Fear is Being Left Alone

But the fear of those who have HIV is not merely of being alone, but of being left alone — abandoned by family or by friends and lovers who have died before you, or who are afraid to be with you. Alone from rejection by your natural kin, or fear of being left out of a social service or health care system that was not designed with you in mind.

Yes, the fear of being alone is much different with HIV/AIDS. This fear is still very real where the mere mention of the word AIDS has meant abandonment and shame. Stories of fear and shame and rejection, have practically defined this epidemic. No person living with HIV wants to become the subject of yet another true story of rejection or hate. So, we guard our status with our lives.

Our Place of Sanctuary

People with HIV long to know that sanctuaries exist somewhere or in someone where they will not be judged, but simply loved. Those sanctuaries of trust should be in our families, our friends, and our church.

The isolation of HIV/AIDS is not just with the infected. It is with the affected as well. Have you ever looked in the face of a co-worker full of worry or sadness and wondered what to say? If you actually were to ask what is the matter, wouldn’t you be shocked to hear, “I am worried because my pregnant daughter has AIDS.” or “I’m concerned about my brother’s roommate. I think he is dying of AIDS.”

Many Suffer Alone

All too often the affected, like the infected, suffer in secret and alone. In fact, despite all of our AIDS awareness, we are more likely to openly discuss that we have cared about someone with AIDS only after they have died, when our grief is too great to hold back, than to talk about it openly while that person is alive. The stigma of association is almost as strong as the stigma of being infected.

Those who grieve are also just as likely to face their pain alone. With the accumulation of grief and suffering, of pain and rejection, combined with the history of isolation of so many infected and affected, is there any wonder that the AIDS community has not been celebrating with great jubilation the development of our best hope: protease inhibitors and the Salk vaccine?

These drugs are remarkable and they, along with the daring cocktails of using various drug therapies together, are offering tremendous breakthroughs in maintaining or slowing or even reversing the pace of HIV’s devastation on the immune system.

Develop New Language

If “cautious optimism” is the politically correct way of defining these therapies as “hope,” then we need to develop new language. And yet that is precisely how these drug therapies are being celebrated. The people I know who are capable of tolerating protease inhibitors are thrilled, and the improvement in their health is very impressive.

But in the faces of the infected you see the caveat, “I hope this lasts, but I don’t have faith that it will.” And the sadness in the faces of those who cannot tolerate protease inhibitors, of which there are many, or who cannot afford them, of which there are many more, is as sad as any you have ever seen in this epidemic.

To ask “Are you on protease?”, only to hear that the person cannot take them, or cannot afford them at an average cost of $15,000 a year, means that their great despair is almost certainly being borne alone. Protease will have almost no impact on the 21 million around the world living with HIV, most of whom are in Third World countries.

AIDS has caused more people to question their faith and their religious institutions than any other public health crisis in this century. This spiritual crisis has gone generally unspoken and undocumented in AIDS research, but one that we who live in and among this epidemic know is true.

We can talk about condoms and describe sexual acts with clinical certainty, for the purpose of saving lives, but we almost never talk about saving souls. The souls of our people and the soul of our churches.

The Heart of God

People living with AIDS want to know, and need to know, that they are in the heart and mind of God: that they are not alone. We need to know that as we face mortality, we are connected to a creator force that knows us by name and accepts us for who we are. Just as the faith of the infected is often at risk, so is that of the affected.

I do not think it is productive for people of faith to debate, “What does God say about AIDS?” Instead of searching for what God says, we should be asking, “What does God expect you to do about AIDS?”

For people of faith, what we do about AIDS begins with the profound awareness that we are not alone. “There but for the grace of God go I,” has motivated gay men by the thousands to take care of sick friends. Believe it or not, but it has also motivated recovering IV drug addicts to take on the challenge of educating the drug using community about HIV.

But “with the grace of God go I,” is the real theme of service in the HIV community. It takes courage to do this work in HIV/AIDS. You need God with you to hand out condoms at 2 a.m. to prostitutes; you need God with you to deliver clean works to shooting galleries and crack houses; you need God with you to tend a 104 degree fever, or even to deliver food to a neighborhood you do not know. Sometimes you need God with you to attend a Ryan White Planning Council or Community Prevention Group meeting. And the fact that God is with them is real. I have yet to hear of an AIDS outreach worker being mugged or beaten, or of a volunteer who lost their life in the course of this work.

As people of faith, we are profoundly aware that we are not alone. And with that powerful knowledge, we have become heroes and heroines. The buddies, the volunteers, the food deliverers, and even the lawyers who write wills and powers of attorney for free. Every one was desperate to say “At least I am with you.” I know that people living with AIDS have felt the love of God through those people. They have seen the face of God in the faces of those who care.

Teach by Example

We can teach by example that the heart of every member of our congregations should be open to accepting and loving and praying for every member of the HIV community. For if you come to pray for only one and not for all of the afflicted, all who grieve and all who care and serve, then you have missed your faith’s message. No religion revels in the suffering of others. We are all children of God, and we are in this epidemic together.

And I assure you, that when God sends a cure, it will be for all of us. But it will be our job to make certain that it is for all of us.

If the faith community cannot sustain day after day the message of fairness and hope, of love and acceptance, of prevention and care, then who can? Then who should? I cannot do this work alone any more than you can, but together we can make a difference, a difference that would make our great prophets and messiahs proud.

We’re Tired, but Go On

Half-way through this second decade of AIDS, a lot of us are tired, and worn out and cried out. Our losses have been too great and our victories have been hard won. The work will never stop until a cure is found. But for today and for tomorrow, and the day after that, someone new needs to hear the gospel of prevention.

Some new true story of care and compassion needs to be enacted. And whether God calls you to serve, or simply to love, respond for us all. Be bold in answering, through word or deed, in silence or aloud, so that every child of God can know whose life is touched by AIDS: You are not alone.

This article is excerpted from an address given by Jesse Milan, Esq., President of the National Episcopal AIDS Coalition, at a World AIDS Day event at the US Centers for Disease Control and Prevention.