Immersed in death, dying yourself, or sitting vigil by the bedside of someone who is, death loses some of its mystery, and there comes a time of liberation, of untethering, and you feel like a kite pulled by the wind so hard it breaks loose from the hand that is trying to reel it in to earth, and floats away into infinity. The worst that can happen has happened or is about to happen, and so fear of it becomes no longer the point.
So says the narrator of Paula Peterson’s “In the Grove,” a short story about grief and loss in the wake of HIV. She is the mother of a boy who has come to this AIDS memorial garden to find her name. She watches, proud of the boy he has become. She does her best to absorb and transform his anger and fear. But she is dead. She cannot make things right. She cannot comfort him. She can only watch.
But he has no patience for this small print, for the names that curve into one another, one leaving off where the other begins; his eyes are beginning to ache. Suddenly he dashes the bunch of flowers to the ground, willy-nilly. He stomps on them, flattening them; he pulverizes the rose with the heel of his sneaker… he sits there without a mother to berate him for his inability to find a tiny name inscribed in a circle of other names on the ground. Her name, in fact, which makes it worse. If she had not died, he would not be wasting a perfectly good summer morning biking down into a grove for an activity as pointless and futile as this. No one steps in to stand between him and his inchoate grief.
No one steps in.
There, there’s the problem, I think. Because that boy should have someone to talk to, someone to walk with him through this grief. Someone to tell him that he is loved and that he will be supported. It turns out that there’s a role for the church here. And by church I mean the people of God, us– you and me– the ones here who can still comfort and grieve with and accompany those in our communities who have lost someone to HIV/AIDS.
I thought of Peterson’s story when I read a recent LA Times article, “AIDS Memorial in Need of Care.” Bryce Alderton explained that the Laguna Beach AIDS memorial garden has fallen into disrepair.
The garden sits atop a bluff overlooking the ocean but has hardly more than a few concrete steps, a bench, and a statue of an angel. It was the brainchild of long-time Laguna Beach resident Michel Martenay, who succumbed to the disease in 2009 after tending the garden for 20 years.
The Garden of Peace and Love has become overgrown, dry, and sad. Bill Rosendahl, who met his partner at the garden, explains its significance:
“I would go there and pray literally in my meditative way, and remember people who have passed on,” Rosendahl said.
Perhaps others will tend to the garden, to make it like the grove of Peterson’s story, which the narrator describes as “pastoral, sheltering.” Or maybe our churches can become pastoral and sheltering. Is this too much to ask?
People continue to die of AIDS. People continue to grieve. Not everyone has a garden or grove, but we have found other ways to remember the beloved departed and express our grief.
For many, World AIDS Day provides this 0pportunity. World AIDS Day is held on December 1st each year and is an opportunity for people worldwide to:
- unite in the fight against HIV
- show their support for people living with HIV; and
- remember those who have died of AIDS.
World AIDS Day began in 1988 in recognition of those living with the disease and was the first ever global health day. It is the day that UNAIDS releases their updated statistics each year. So this year, the WAD fact sheet reminds us that in 2013, there were 35 million people living with HIV. Since the start of the epidemic, around 78 million people have become infected with HIV and 39 million people have died of AIDS-related illnesses. We remember:
- HIV is the leading cause of death among women of reproductive age.
- In 2013, 54% of pregnant women in low- and middle-income countries did not receive an HIV test.
- In 2013, almost 60% of all new HIV infections among young people aged 15–24 occurred among adolescent girls and young women.
- AIDS-related illnesses are the leading cause of death among adolescents aged 10–19 years in Africa.
- Globally, gay men and other men who have sex with men are 19 times more likely to be living with HIV than the general population.
- HIV prevalence among sex workers is 12 times greater than among the general population.
- Transgender women are 49 times more likely to acquire HIV than all adults of reproductive age.
- HIV prevalence is estimated to be up to 28 times higher among people who inject drugs than the general population.
Church communities have a significant role to play in responding compassionately to persons affected by HIV and in working to promote the health and wellness of all persons infected and affected by HIV. World AIDS Day provides an opportunity for all of us to renew our commitments to address health care disparities, combat stigma, empower persons at risk to know their status, and create dialogue about healthy sexual relationships. The truth is that HIV is a preventable disease and yet too many people continue to test positive each year. Those who have the courage to get tested and find out they are positive often find that they are too fearful to share their status in their church communities. Many suffer in silence. Together we can help provide social support so that each member of our community can face the future with hope, dignity, and peace. But how do we carry on the memory of those who have passed? And what can we say to those in our congregations today?
A role for the church? What kinds of messages should we prioritize?
These are some of the messages that are appropriate in my context (San Diego, California, USA). But in other contexts, other messages might be more appropriate.
1. Know your status. Get tested so that you know if you are HIV-positive. It is better to know and the earlier a person knows the better. Rapid tests are available and counseling is available for the newly diagnosed.
2. Get into treatment. Treatment can extend your life and help you feel better. Case managers can help you navigate the complex healthcare system and provide resources to help you stay in care.
3. Think about—and openly discuss—what healthy relationships look like. Support those in your family and community who struggle with body image and low self-esteem. In the Christian tradition, good relationships are life-giving for the community and are rooted not in domination or exploitation but in affirmation of the blessedness of God’s creation. Every human person has inherent dignity as a child of God. If you don’t feel valued by your partner or are experiencing violence, we encourage you to get help. No one deserves to be mistreated in a relationship.
4. Think about—and openly discuss—substance abuse and other risk factors for HIV infection. Access to clean equipment can limit the risk of HIV infection for persons who inject drugs. But there are also programs available to offer assistance for persons with addictions. Faith communities want to empower people to live whole, healthy, flourishing lives. Let’s be supportive of those who are most in need of our loving care.
5. Invite affected persons to share their stories. Storytelling can be empowering not only for the one who speaks but for those who, in listening, realize the interconnectedness of the church.
The point is that a life-affirming, contextual approach is best. The preparatory document of the Synod helpfully noted that AIDS is a threat to family stability and to full human flourishing. That document, released last summer, noted:
Other difficulties affecting the family, in additional to physical illnesses, including AIDS, are: mental illness, depression and the death of a child or spouse, all of which call for a pastoral approach which takes into account the unique family situation….The power and urgency of proclaiming the Gospel of mercy is crucial for a Christian community in the course of providing for and receiving persons in these difficulties, especially when a family is particularly in need (no. 79).
Pope Francis has continued to focus on the priority of mercy and the importance of listening. What important messages for World AIDS Day today! Moral theologian Annah Nyadombo, in her book, A Holistic Pastoral Approach to HIV/AIDS Sufferers (Lamber, 2014), crafts the AGAPE approach as a resource for pastors. In summary:
The Church is possessed of particular and indeed unique opportunities to be proactive and imaginative in taking a leadership role in providing education, health, and community development programs to the stigmatized and those close to them. A holistic pastoral approach should address all aspects of life, namely spiritual, physical, social, economic, intellectual, emotional and religious…. The AGAPE Project is this: A. Accceptance. G. Generosity. A. Action. P. Prayer. E. Education. AGAPE aims to engage with the suffering person sensitively, opening to the hope that lies within them and reflecting it towards a different experience than the pervading negativity and hopelessness.
The church’s response to AIDS must be about helping people to flourish. As Nyadombo says, this means addressing all aspects of life. Today, may each of us renew our commitment to AGAPE. So the boy has a shelter, so his departed mother knows he is well taken care of. May our churches become flowering gardens of peace and love and shelter, safe spaces for hard conversations and places of encouragement.
God of our weary years, God of our silent tears, O good and gracious God, you are the God of health and wholeness. In the plan of your creation, you call us to struggle in our sickness and cling always to the cross of your Son. Father, we are your servants. Many of us are now suffering with HIV or AIDS. We come before you, and ask you, if it is your holy will, to take away this suffering from us, restore us to health, and lead us to know you and your powerful healing love of body and spirit. We ask you also to be with those of us who nurse your sick ones. We are the mothers, fathers, sisters, brothers, children, and friends of your suffering people. It is so hard for us to see those whom we love suffer. You know what it is to suffer. Help us to minister in loving care, support, and patience to your people who suffer with HIV and AIDS. Lead us to do whatever it will take to eradicate this illness from the lives of those who are touched by it, both directly and indirectly. Trusting in you and the strength of your Spirit, we pray these things in the name of Jesus. Amen.
–from the United States Conference of Catholic Bishops, African-American HIV/AIDS Task Force, 2007.