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Pastoral Care for Those Affected by HIV

HIV/AIDS Focus Paper #22, November 1993

Contents: Guidelines for the Giving of Pastoral Care to Those Persons Who are Infected/Affected by HIV/AIDS | 10 Assurances of Pastoral Care for Those Infected or Affected by HIV/AIDS | "Do Unto Others..." | Pastoral Care: A Parent's Perspective |

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About This Issue

Dear Network Members:

One question we are most frequently asked is "How do I talk to or counsel with a person living with HIV/AIDS?" This question is not only asked by care partners, friends, and family but also by church professionals, clergy and lay. Even though most religious professionals have had to take some course(s) in pastoral counseling, they often feel inadequate when it comes to providing emotional/spiritual support to individuals and families affected by HIV/AIDS.

This edition of the HIV/AIDS Ministries Network Focus Paper is devoted to providing some inights and practical assistance to anyone faced with responding to the emotional/spiritual needs of persons living with HIV/AIDS.

The emotional/spiritual needs of persons living with HIV/AIDS have never been more acute. HIV positive individuals are living longer than any time in the past 12 years. Because they are living longer, they have to deal with longer-term stresses. Increasing numbers of family members and significant others are choosing to care for the infected individual and also needing emotional/spiritual support themselves. More and more church and community members are coming out of the closet to let it be known that they or their loved one has HIV/AIDS. Increasingly they are seeking out and even demanding supportive, compassionate, and non- judgemental emotional/spiritual support from our religious communities.

In "Guidelines for the Giving of Pastoral Care to Those Infected/Affected by HIV/AIDS" and "10 Assurances of Pastoral Care for Those Infected or Affected by HIV/AIDS," the Reverend Don Nations provides the theological and psychological framework out of which appropriate emotional/spiritual support needs to take place. My own experience supports the notion that such a framework most adequately addresses the emotional/spiritual needs of persons infected with or affected by HIV/AIDS. However, read closely (and if necessary often) the reflections of Richard Cory and William Nunn in the U.M.C. Family HIV/AIDS Network concerning the pastoral care they experienced first hand (both appropriate and inappropriate emotional/spiritual support). They indicate clearly what they found helpful and harmful. All of us who find ourselves or choose to be care partners with persons living with HIV will do well to open ourselves to hear the voice of the Creator spoken through these two stories of faith.

In your Focus Paper mailing, you will find information and/or order forms for a number of new resources. One resource I would invite you to secure is the book recently published by the Department, HIV/AIDS Ministries: A Practical Guide for Pastors by Pat Hoffman. The Department believes it is a basic HIV/AIDS ministry resource which every clergy, lay church professional, or anyone seeking to be in ministry with persons living with HIV/AIDS will find helpful.

Grace & Peace,

Charles Carnahan
Associate General Secretary Executive for HIV/AIDS Ministries

 

Guidelines for the Giving of Pastoral Care to Those Persons Who are Infected/Affected by HIV/AIDS

by Don Nations

  1. The First Question to Ask is Not, "How did You Get Infected?"
    We do not ask someone who has cancer, lupus, or suffered a heart attack how they got sick; so why should we ask that of someone with HIV? When someone tells us their HIV status, they are usually dealing with the present and future more than the past. There may be lifestyle issues that need to be discussed at a future time, but our initial reaction needs to be compassion-- not questioning.

  2. Avoid the "Blame Game."
    Spending time blaming people who are HIV positive for their illness distracts from the most important issues. The truth is that we have all done things in our life that involved risk. For the most part, we have been spared the consequences of those acts. We are hypocritical when we blame others if they suffer the consequences of their acts. The "blame game" prevents us from giving beneficial pastoral care to those who need it.

  3. Compassion is the Key.
    Compassion is being a channel of God's grace and coming to the side of one who is hurting. We suspend judgmentalism and focus on the needs of others. Compassion is shown in gentleness, kindness, acceptance, and love. Pastoral care that lacks compassion is not helpful. Compassion is the way of Jesus.

  4. Confront Your Own Fears.
    Fear leads some pastors and churches to reject people infected/affected by HIV/AIDS. They may refuse to visit or care for them. We must confront our fears with facts, put judgmentalism and prejudice behind us, and get on with the privilege and obligation of ministry.

  5. Focus on Life, Not Death.
    A person infected with HIV will eventually die. So will a person who is not infected by HIV. We all will die; none of us knows when death will arrive. Therefore, our focus needs to be on how we will live the rest of our life. Focusing only on death gives the impression that we have given up hope and are just waiting for the person to die. Focusing on life declares that the person has a lot of living yet to do.

  6. Let the Individual Set the Agenda.
    Many of us like to be in control of everything, including the direction of our conversations. This approach can sabotage our best efforts. The earlier you are in your relationship with the person you are counseling the more they need to control the issues that are discussed. If you begin a relationship by making demands of the HIV positive person such as his/her immediate repentance, notification of family/partner(s), and acceptance of death, you are being, at best, unfair and unhelpful. At worst, you are being destructive.

  7. Confidentiality is a Must.
    We must keep the trust people place in us. Disclosing one's HIV status is often a difficult decision. It means becoming vulnerable and trusting another with a secret. Pastoral visitors are not free to tell others secrets entrusted to us. We do not tell spouses, church committees, pastors, or friends. If we break confidentiality, we may hurt the one who trusted us so much that he/she never reaches out for help again.

  8. Act Like There is Hope.
    HIV is not a situation completely devoid of hope. New medications are extending the lives of persons infected with HIV. A cure may be found. There is the power of prayer. Most importantly, we all have much living left to do. The gospel of Jesus Christ is a call to hope that this life is meaningful because God is working in our life and eternity will be spent in the presence of God.

  9. Affirm the Worth of the Person.
    All people are created in the image of God. All people inherently have great dignity and eternal worth. God's grace has gone out to all people and God, calling all people to a life filled with power, love, joy, and service to others. "God so loved the world" (John 3:16) means that there are no second class people. We must embody the message of love or we fail to offer the Gospel.

  10. Feel Free to Show Emotion.
    HIV/AIDS surfaces concerns about death, prolonged illness, lack of control of our lives, financial stability, transmission of the disease, prejudice, and more. The giving of good pastoral care requires that we confront these issues and get in touch with our own emotions about them. We must be careful, however, to respond to the needs of the person and not our own anxiety, fear, and pity. Our role is to be a pastor to them, not the reverse. Be emotionally present. Feel free to appropriately cry, laugh, or express other emotions when visiting with a person who has HIV.

  11. Remember to Touch.
    One of the tragedies of HIV is that many people are reluctant to touch someone who is HIV positive. Some of this hesitation is due to irrational fears about contracting HIV through casual contact. Others hesitate because they do not accept the HIV positive person or the lifestyle they are believed to have. Whatever the reason, refusing to touch someone who wants to be touched sends the message that we are not emotionally present for the person or that we do not accept the person. (We must also be sensitive to times when a person does not want to be touched for any reason or cannot be touched because of a physical condition.) Our willingness to touch shows our willingness to care.

  12. Look for the Stages of Grief.
    People who are infected/affected by HIV wrestle with the stages of grief. They deal with shock, denial, anger, bargaining, depression, and acceptance. People go through these stages in differing periods of time and may bounce back and forth between stages. People will grieve over their HIV status, an AIDS diagnosis, the loss of a job, becoming symptomatic, the loss of their future, the death of their friends, and the anticipation of their own death. Our job is not necessarily to move people through these stages but to help them deal with their present stage. We are called to offer support to our brothers and sisters during these difficult times.

  13. Be Aware of the Psychosocial Issues Surrounding HIV/AIDS.
    Those infected/affected with HIV deal with a variety of issues such as social isolation, rejection by friends and family, prolonged periods of illness, fear of what tomorrow will bring, the sometimes negative reactions of the religious community, reproductive decisions, guilt, and grieving. As givers of pastoral care, we need to recognize these issues and help people as they work their way through them. We also need to educate our community about HIV/AIDS so that it may respond supportively.

  14. Expressions of Spirituality and the Experience of Spiritual Life Varies from Person to Person.
    No one experiences God in the same way. Some people express their faith emotionally; others are quiet and contemplative. Some people enjoy singing; others prefer to listen. Some belong to a particular religious group; others do not. Some are very sure about their spiritual direction; others are searching and have a lot of questions. Such differences are not bad. They demonstrate the unique way God reaches out to all of us.

    Since religious expressions differ, we must not require everyone to experience God the way that we do. We can not assume that we know another person's spirituality just because we know they are infected/affected by HIV. We must be present as pastoral guides who help people to find their own way on their spiritual journey.

  15. Avoid Saying, "I Know How You Feel."
    Even if we had similar situations, we cannot completely understand how anyone else is experiencing a particular situation. More helpful responses include, "I hear your pain"; "I am sorry"; "I am here for you"; "I understand this is a difficult time for you"; "What can I do to help?"; and "How do you feel?" Sometimes a quiet hug is appropriate and needed.

  16. Get Educated.
    To give helpful, consistent pastoral care, educate yourself about HIV. Learn the basic facts about modes of transmission, progression of the infection, common illnesses and medications, and the psychosocial issues that surround HIV/AIDS. Becoming educated about HIV communicates to people with HIV that you care about them. You can find out about HIV in many ways: books, tapes, seminars, volunteer opportunities, HIV/AIDS hotlines, American Red Cross programs, denominational resources, hospitals, and more. However you choose to become educated, do it today.

  17. Pastoral Care with a Person Infected/Affected by HIV/AIDS is Usually a Long Process.
    We cannot heal every wound and solve every problem in one hour. Pastoral care with someone whose life has been touched by HIV requires time, patience, and the development of a relationship. Our role is to come along side of people and support them, to be present with them. It is not to answer every question and give the solution to every problem. We must be patient as people work through the stages of grief and the myriad of issues that surround HIV.

  18. Know Your Limits.
    HIV brings us into contact with issues such as counseling, bio-ethics, living wills, medical treatment, grief, guilt, stress reduction, and nutrition. None of us can adequately deal with all of these issues. We must realize when we have reached our limits and be willing to refer the client to another person.

  19. Every Pastoral Care Situation Can Be Used by God to Make Us into the People God Wants Us to Be.
    God meets us in the people we encounter. People living with HIV, through the issues they raise, help us confront fear, death, frustration, impatience, prejudice, and spirituality. Walking through these issues with our them can be mutually beneficial. We must always be open to growth and personal change.

  20. Doctrine, Dogma, Denominationalism, and Guidelines are Not Adequate Substitutes for Caring, Sharing, and Love.
    We all operate within the structure of a religious organization. That does not mean, however, that all we have to offer is that structure. We must add to that framework caring, personal sharing, and love. Unless we become personally involved, we will fail to show God's love to others and fail to follow the example of Jesus.

 

Ten Assurances of Pastoral Care for Those Infected or Affected by HIV/AIDS

by Don Nations

Assurance #1: God Loves All of Us.

Scripture: John 3:16-18; John 10:27-29; Romans 8:35-39; I John 4:7, 8

God is love. God's love is extended to all people. It has no end and is unconditional. God's love has no "ifs, ands, or buts." No one and no thing can separate us from the love of God that is in Jesus.

We are all precious to God. Jesus lived, died, and was raised from the dead in order to demonstrate God's love for us. Our love for God is demonstrated by our loyalty to Jesus and our love for one another.

Even when we feel unloved or unlovable, God's love is constant. Even when we disappoint ourselves, God continues to love us. Even when others turn their love away from us, God's love for us never waivers.

HIV often makes us feel separated from others-- our families, our friends, our partner, even God. The Scriptures assure us that nothing can separate us from God's love-- not even HIV. In the midst of the challenges of HIV/AIDS, we can be assured that God still loves us.

God accepts us right where we are. That does not mean that God approves of all we do or that God is willing to leave us just the way we are. It does mean that God's acceptance is unconditional. We are loved!

Assurance #2: God Will Draw Near to Us.

Scripture: Psalm 145:18; Ephesians 2:13-14, 19; Hebrews 10:19-22; James 4:7, 8

An affliction far more common than AIDS is "'FRAIDS," an irrational fear of HIV/AIDS and those infected/affected by HIV. This fear produces anger, discrimination, spreading of myths, and avoidance of those infected/affected by HIV/AIDS.

God does not have 'FRAIDS! God desires intimate contact with us. God wants to hear our concerns, fears, hopes, dreams, and questions. God wants to cry with us and laugh with us. God wants to hear our prayers and to talk with us.

When HIV touches our life, we often experience the end of some relationships. Because we do not want to be hurt again, we can become reluctant to reach out to others.

God wants us to take the chance and reach out. God will never hurt us. God will never turn away from us. God will not cut off our spiritual relationship with Jesus Christ. We can be sure that if we reach out to God, we will find that God is already reaching out to us. If we draw near to God, God will draw near to us (James 4:8).

Assurance #3: God Offers Forgiveness.

Scripture: Psalm 130:1-4; Isaiah 1:18-19; I John 1:9-2:2

Guilt! We have all felt it. We have carried it around with us. We have been its victim. The good news is that God has provided a way for us to unload our burden of guilt. That way is God's forgiveness of our sins through Jesus.

God's grace and forgiveness is greater than our sin. Forgiveness is God's work. Receiving God's forgiveness allows us to forgive ourselves for the mistakes we have made. It also allows us to forgive those who have hurt us.

Letting go of guilt is a healthy choice. It frees up emotional energy for us to deal with the other issues of life. It liberates spiritual energy so that we can continue our spiritual journey. It releases physical energy so that we can keep our bodies healthier.

Forgiveness also helps each of us to be honest with ourself. We must admit that we are not perfect and that some things in our life must change. This admission helps us to stop wasting time. Then we can spend our time more constructively, doing the things that make us stronger.

Forgiveness is a gift that truly is good for us.

Assurance #4: God is with Us.

Scripture: Joshua 1:5; Psalm 23; Matthew 28:18-20; Hebrews 13:5, 6; II Corinthians 4:7-10

When we are HIV positive, we can feel very isolated and alone. We need to know that someone will be there for us, even in the hard times of life. God will never desert us or leave us alone. Many things can make us feel isolated and alone. HIV/AIDS scares some people away from us. Sometimes HIV scares us away from other people. Managing our health, visiting doctors, and dealing with changing working conditions steals much of our time, thus often preventing us from spending time with others.

God is with us, in good times or bad; in health or sickness; in strength or weakness. We may have to endure many things in this life, but we do not have to be lonely. God has promised to remain with us forever and ever-- in this life and in the next. We are not alone.

Assurance #5: God Brings Good into Our Life.

Scripture: Romans 8:28; James 1:2-4, 12, 17; I Peter 1:3-9

God does not make bad things happen to us. God does not make us sick. God brings good into our life.

Bad things happen for a variety of reasons. We suffer because of the mistakes of others. We suffer because our decisions have brought negative consequences. We suffer because of the evil structures of society. Sometimes there is no satisfactory reason for our suffering.

God promises to help us bring good results out of difficult situations. HIV has affected our lives. The question we must answer is, "How are we going to react to this reality of life?" We can choose to live in denial or face our mortality and be freed from the fear of death. We can choose to withdraw into ourselves or reach out to find the support we need and offer support to others. We can choose to run from God or to reach out and have a relationship with a God who offers us goodness, love, and care.

Assurance #6: God Gives Us a Purpose.

Scripture: Matthew 28:18-20; Mark 1:14-20; John 14:1-15; II Peter 1:1-8

One of the most terrible things is to live without purpose: to have no plans, no direction, no goals, no reason for living. To merely "exist" is a tragic way to spend our time when we could be living.

When HIV touches our life, we may feel hopeless and want to stop living. We start to lose sight of our dreams and plans. We begin to believe that we have no purpose. That is not true!

God affirms that we always have a purpose. As long as we are seeking to become better people, reach out to others, work on our spiritual growth, care and pray-- we have a purpose.

How do we find our purpose? We can start by doing a self-inventory. We can ask: "What are my talents, resources, goals, hopes, and dreams? What is most important to me? How has God gifted me?" Next, we ask: "What are the needs of my family, friends, society? What would God have me do about these needs?" Then, we ask: "Where does my self-inventory match up with the needs I see?" The intersection of or self-inventory and the needs of others may be a good place to begin fulfilling our purpose.

God offers us life. God will give us a purpose. Let us be done with existing and get on with living!

Assurance #7: God Gives Us Strength.

Scripture: Psalm 34:4; II Corinthians 12:9, 10; Philippians 4:13

All of us feel tired and overburdened sometimes. Demands related to friends, family, work, health can tire us out. Add the challenges of HIV to this mix and it is easy for us to reach the point of exhaustion. We may begin to believe that we can not overcome the next difficulty we face.

We find strength as we become connected to God through Jesus Christ. In this spiritual relationship, we find what we can not find in ourselves. Our strength is not found in wrestling with life but in resting in God's hands (Isaiah 40:29-31).

How reassuring to know that spiritual strength is promised to those who wait upon God. How empowering to realize that we can face all challenges backed by the power of God.

Strength is not measured in weight, muscle size, or athletic ability. Strength is measured by our oneness with God. As our spiritual relationship becomes stronger, we become stronger people. God's strength will never fail us.

Assurance #8: Peace, Hope, and Joy are God's Gifts.

Scripture: John 14:27; Romans 5:1-5; II Corinthians 12:9, 10; Philippians 4:4-7; Hebrews 4:16

Beyond the materialism and selfishness of society (and ourselves), we need peace, hope, and joy. We feel these needs more intensely when our lives are touched by HIV.

That we live in a disturbed world is not news to anyone. That we can find peace in the midst of it IS news. God offers us peace. We can have peace because we know we are God's. We know that justice will prevail. God never leaves us.

Hope and HIV are not opposites. HIV affects the body but hope is found in the soul. We hope for a cure. We hope that we can fulfill our dreams. We the have hope that after we take the step of death, our story will not end. In fact, our hope says that our existence is eternal and that one day we will be in a place with no death, illness, or tears of pain.

Scripture calls us to rejoice at all times. While we do not rejoice about the negative things in our life, we do rejoice that God goes through these things with us. We rejoice that the love in our hearts will last forever. We find joy in the faces of children, in the little things of life, and in the kindness of loved ones. Without peace, hope, and love, life is unbearable. With them, we can live and thrive.

Assurance #9: God Takes the Side of the Poor, the Sick, and the Oppressed.

Scripture: Amos 5:10-15, 21-24; Matthew 5:1-12; James 1:27; 2:2-9

God's love is extended to all people. God has a special concern for the persons who are poor, sick, and oppressed. Repeatedly Scripture defines true religion as caring for the poor, the stranger, and the afflicted. Scripture condemns the actions of those who are unjust, abuse their positions of power, and close their eyes to the needs of others.

HIV/AIDS increases poverty. Those who are poor become poorer. Many who have been financially comfortable become poor. Due to peoples' fears and unjust social structures, being infected/affected by HIV often results in our oppression.

God does not desire us to be in poverty, to be sick, or to be oppressed, but sometimes we are. God is not indifferent to our situation. God is our advocate, our comforter, and our refuge. God's will is for justice for all. As The Reverend Dr. Martin Luther King, Jr. said, "even though the arc of the moral universe is long, it bends towards justice." The struggle may be long, but we do not struggle alone. God struggles along side of us and on our behalf.

We can take comfort in the knowledge that our situation is not forgotten by God. Jesus came to preach good news to the poor and set free the downtrodden.

 

Assurance #10: God Never Gives Up on Us.

Scripture: Psalm 12; Psalm 18; Proverbs 3; Hebrews 12:1-3

People sometimes break their promises, destroying our faith in them. We may become so disappointed in the actions of others that we begin to give up on people. When the people who hurt us are members of the religious community, we are tempted to give up on religious institutions and people. We can even be tempted to give up on God.

Some clergy and congregations fail to meet the needs of people. However, millions of people, including those whose lives have been touched by HIV/AIDS, have found parts of the Christian community to be very supportive.

We all need spiritual moorings, to feel connected to something greater than ourselves. We all need to feel like we have a place in eternity. We want to experience love, peace, forgiveness, and hope. We lose all of these benefits if we react to the uncaring acts of others by shutting down our spiritual life.

People will sometimes fail us, but God will not. God is always greater than the people who claim God's name. Even if we have given up on people, we do not need to give up on God. God never gives up on us.

 

The Reverend Don Nations is pastor of Port Tampa United Methodist Church in Tampa, Florida and a member of Florida Annual Conference. He is on the clergy advisory committee of Francis House, a spiritual outreach to those infected/affected by HIV/AIDS, and an HIV/AIDS instructor. Copies of the brochures 10 Assurances and Guidelines for Giving of Pastoral Care to Those Persons Who Are Infected/Affected by HIV/AIDS, from which the two articles in this Focus Paper were adapted, may be obtained from The Reverend Don Nations, Port Tampa United Methodist Church, 6914 South DeSoto Street, Tampa, Florida, 33616, (813) 837-5002.

 

U.M. Family HIV/AIDS Network: A Network of United Methodist Families and Others Who Have Been Touched by HIV/AIDS

"Do Unto Others..."

by Richard B. Cory

Introduction

On 21 February 1986, Catherine and Richard Cory were blessed by the birth of Alexander Nicholas Cory, a beautiful baby boy. Afterward, Catherine experienced post-operative bleeding. She received a massive transfusion--18 units of whole blood and 4 units of blood clotting factors. (50 donors or more are required to produce 1 unit of blood clotting factors.) Catherine became comatose and spent several days in intensive care. During her recovery, she breast fed Alex.

In the spring of 1987, Catherine went to the American Red Cross to donate blood. A week or so later, the Red Cross called Catherine and asked her to come back into their office. They gave no further explanation. When Catherine went to see them, they told her that she had tested positive for HIV. Subsequent testing of the rest of the family showed that Alex was also positive and I was negative.

A general sense of well being, not only physical, but also spiritual and emotional, plays a major role in the care of persons with life-threatening illnesses. Both medical research and personal testimonies have confirmed this. When persons are faced with their own mortality, especially at an early age, it is not uncommon for them to look to the community and especially the church for support.

Unfortunately, HIV/AIDS carries a strong stigma. Many people believe that those infected with HIV somehow did something to "deserve" AIDS. Despite several years of publicity and education, many only know that HIV/AIDS kills, so they want nothing to do with persons who are HIV positive. Many people still react negatively towards a friend or even family member who lets it be known that they are infected.

The result is that many who are HIV positive feel compelled to live in secrecy. As if facing a life-threatening illness is not hard enough, they have to hide to avoid being the target of unfounded fear, hate, and bigotry born of ignorance. In short, at a time when the support of the community is most needed, it is not available. Rather than being supported, people living with HIV/AIDS often become outcasts.

Examples of Lack of Support and Ignorance

What follows, are some experiences that I have had concerning how the lack of support and ignorance of others has affected my family.

  1. When Alex was about two years old, my wife and I were both working. We enrolled him in a day care facility near home. As recommended by my son's physician, we discussed his HIV status with the owners of the day care facility. After consulting with the state health department, the Red Cross, and talking to my son's doctor, they said they would have no problem accepting him for day care.

    A few months later, Cathie picked Alex up early and said something about taking him to see a doctor. A day care staff person asked about his health (presumably showing genuine concern). Alex was asymptomatic at the time. My wife spilled the beans, saying he was being treated for HIV.

    During the next several days, the employee resigned her job and called the parents of other children. She told them that their children could have AIDS because they were exposed to a child with AIDS in the day care center. Many parents were very upset, even threatening a law suit. We were told that one of the loudest voices in the crowd was a medical doctor!

    We had to withdraw Alex from the day care center and find other accommodations.

  2. When Alex was about four, both Cathie and I were still working. A neighbor who was a very dear friend took care of Alex for us while we were at work. Alex even referred to her as his "other mommy." She was well aware of Alex's diagnosis and treated him as if he was one of her own.

    The neighbor had a daughter who was just one day older than Alex. She enrolled her daughter in a preschool at a nearby Lutheran Church. We thought this was a good idea; so we enrolled Alex as well. Cathie talked to a school administrator about Alex's condition (still asymptomatic), who gave us a very positive response.

    A couple of weeks before the school was to begin, the pastor of the church asked to come to our home to speak with us. We assumed that since we were not members of his congregation he simply wanted to meet us. When he arrived he explained that the school staff had been informed that a child would be coming that was HIV positive. They promptly offered their mass resignation if that child was admitted. He asked us to withdraw Alex. The basic idea was, if my son came to the school, there wouldn't be any school to come to. We withdrew him.

    We had already told Alex that he would be going to school. He had been very proud that he was so "grown up." Now we had to tell him he could not go. It made it no easier that his best friend would be going and he couldn't. In all fairness, the pastor did invite us to attend his church and promised his support at church. The teachers in the school were not members of his congregation so he said had little influence over them.

  3. When Alex was to begin kindergarten, my wife, being Catholic, wanted to enroll him in the local Catholic school. Alex was still asymptomatic but he was taking medications that would have to be dispensed during the school day. We considered (based on our previous experiences) not saying anything to the school administration. We decided that it would only be a matter of time before someone realized that Retrovir and AZT were the same drug and the only reason for a person to take AZT is for HIV.

    We went in and talked to the principal. Much to our dismay, the principal was dead set against him attending "her" school. Initially she claimed that she didn't have the necessary medical facilities. We told her that the only thing she needed was a teaspoon and a responsible adult to give him his medicine once during the school day. Then she indicated she had cancer and her immune system was depressed so she might get "IT." We offered our sympathy and pointed out that HIV is not spread through casual contact. Ultimately, the bottom line was that she feared that if the other parents found out, she might lose enrollment. Those enrollment figures were more important than my son.

    We asked the parish priest to intervene on our behalf. He told us that the school was independent of the parish and that he had no say. I asked him if he was the spiritual leader/advisor for the school. He answered yes, but told us this was a business matter that he had no say in.

    We pursued the issue further. Finally the diocese agreed to discuss it. We offered brochures from the Red Cross and speakers, including our son's doctor. They told us none of this was necessary--they would handle it. We asked to address the meeting of the diocese; they said this was impossible. After several months, the diocese had their meeting. They decided they did not have enough information, so they postponed setting any policy until a future meeting. In the meantime, school started.

    We have never heard anything further from the church concerning this. One of the most tragic losses was not only that my son could not attend the school but my wife has stopped attending church. She feels betrayed by the church that she was raised in from an infant.

Not all of the news is bad. Following are some more upbeat stories of support and understanding.

Examples of Support and Understanding

  1. Recently we told Alex that he has AIDS. He's 7 1/2 now. We had avoided telling him before. When he asked me directly, "Daddy... do I have AIDS?" I couldn't see not telling him the truth.

    About a week after this conversation, Alex announced to the children at the bus stop (and several parents) that he had AIDS. A number of parents have since offered their sympathy and support. One parent reacted with anger over not being told sooner. She was afraid because her son plays with Alex frequently.

    We shared the facts about AIDS with her, including brochures from the Red Cross. Then she called the National AIDS Hotline. She has turned out to be very loving and understanding, and her son still plays with mine.

  2. My son wanted to join the Cub Scouts. I was concerned about the reaction that we would get when he told people, which was bound to happen sooner or later.

    I called the executive director of the local council of the Boy Scouts of America. I told him of my son's condition and offered my services as an educator. (I'm a recently certified HIV/AIDS instructor.) Much to my dismay, he said there really wasn't a problem here with HIV/AIDS. He didn't see the need and had no desire for the services I could provide. Furthermore, the Boy Scouts have no specific policy concerning AIDS. If the local "pack" or "den" decided they didn't want Alex there, he could be thrown out. Needless to say, I was not happy with this.

    I approached the local den leader and scout master. Both have been very supportive. The current plan is to meet with parents and tell them (along with some training) that a child in the pack has AIDS (unfortunately Alex is no longer asymptomatic). If any parents want to make a fuss, they will be assisted in finding another pack for their children to join... but Alex will NOT be thrown out. This Cub Scout Pack, by the way, is sponsored by a Baptist Church.

  3. One instance of support and understanding that sticks out in my mind is a conversation I had with Alex's teacher at the beginning of this school year. She shared with me about her meeting with the principal and vice principal. They told her a child who has AIDS would be attending school and asked if she would object to him being in her class.

    She told me: "I was stunned at first... I didn't know what to say. Then I asked myself 'What would Jesus do?' and the answer came easy. Of course, I'll take this child in my class and into my heart." If more people would take the time to ask themselves that question when faced with a tough decision, the world would be a much better place and life would be so much simpler.

Conclusion

Though we have experienced hatred and bigotry, we have also received a great deal of support and friendship from many people. I remember as a child learning about Jesus ministering to the sick and lame... even to the lepers who were outcasts of society.

People with AIDS are humans too. Like everyone else they have a need to be needed... to fit in. People ask me, "What can I do to help?" I tell them that the most important thing they can do is to be a friend. That may mean just going through life as usual, providing a shoulder to cry on, maybe a comforting hug, or maybe just simply being there. Treating those with HIV/AIDS with kindness and dignity is by far the greatest gift that can be given. The "Golden Rule" applies, "Do unto others as you would have them do unto you."

 

Richard B. Cory lives in Chesapeake, VA. He is an American Red Cross certified HIV/AIDS instructor and a member of the National Association of People with AIDS (NAPWA).

 

Pastoral Care: A Parent's Perspective

by William Nunn

The topic of pastoral care gives me great pain. I am very sad that so many clergy will not visit a person with AIDS. I am also sad that some who do visit spend their time reprimanding the person for the "evil life" they have lived.

This article was written as a result of my efforts to find a pastor to go to our son after he entered the hospital. Of all I contacted, only two offered to go. One did not get there in time and the other walked into the room, stared at him, and left without a word. I was devastated at this lack of pastoral care. I was not aware, at the time, of the clergy person who had counseled him in his earlier hospitalization. My son had told me that he had made his peace with God, but I had no idea how he had done so. He told me that no one had come.

Those of us who try to live by the Bible know it tells us about how we should live, though the Bible is interpreted in different ways by different denominations and even by different people within denominations. These beliefs can be argued without end. Some religious teachings say that our behaviors can cause our downfall and sentence to hell. However, we also have been taught that the worst of sinners can be forgiven and receive the life everlasting. We know that, in Christianity at least, even a last breath reconciliation with God can be made.

How can clergy, if they profess to be doing the work of the Lord, refuse to minister to people who are HIV positive? We read in the Bible that Jesus worked with lepers and prostitutes, healing and bringing them to salvation. Would he not be working with people with AIDS and others who suffer in so many ways if he were here today?

A pastor need not fear contamination from AIDS when visiting a person who has HIV. Talking, holding the hand, praying, and counseling are all safe. No one gets AIDS that way. Those who stand at the door of the room and yell a prayer at the sick person may as well stay home. This is of no help. Rejection is obvious, or is it fear... or both?

A pastoral visitor may suffer emotional strain if a person tells them a life story of drug use or multiple partner sex. Pastors must keep in mind that the story may be poured out in an effort to shock, to see if the pastor will flee the room. Once the person's story is out in the open and the visitor accepts it, then the tension goes away and is replaced by trust. Then progress can be made and real healing can happen.

The important thing for pastors is to give people with HIV counsel, comfort, hope for the hereafter. Ranting at them about sin is not going to help or solve anything. If you are a pastor who thinks it is helpful to tell persons with AIDS that they are going to hell for their sins, please stay home. If you feel you can tell them about the grace and forgiveness of God, then go and help them find their peace.

I hope that clergy will learn to comfort and counsel persons living with AIDS. Pastoral care for persons with HIV is not much different from care for any person who has a terminal illness. All who are ill need and appreciate similar things: sincerity, concern, care, comfort, intercessory prayer, and love. They need to know about and experience God's love.

I mentioned earlier that initially I did not know about the pastor who visited my son when he was first hospitalized. She had not been without shock in the whole matter of his life story. His story was not a pleasant one, but she reacted calmly and with unconditional love. He responded when he knew she was sincere. She spent much time with him and helped him work through his life and his feelings. She helped him make his peace with God. Later she assured us that he had made the right decisions and that he was going to live in the house of the Lord forever.

I am thankful for those blessed pastors who go to a person who has HIV with unconditional love and work with him or her to dispose of the guilt and pain. These pastors bring the person to the grace of God and help them feel hope, no matter how late the hour. I am eternally grateful to this lady for her willingness to minister to my son, someone she had not known previously and someone who desperately needed her counsel and guidance.

 

William (Bill) Nunn is recently retired from managing a retirement facility in Pennsylvania. His son died of HIV related disease. He consented to share some of his experiences with us, and thus with you, concerning watching ones child live and die with AIDS.

 

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HIV/AIDS Ministries Network Focus Papers are a publication of the Health and Welfare Ministries , General Board of Global Ministries, The United Methodist Church, Room 330, 475 Riverside Drive, New York, NY 10115. Phone: 212-870-3909. FAX: 212-749-2641. E-MAIL: aidsmin@gbgm-umc.org. Focus Papers, unless otherwise noted, may be quoted, reproduced and distributed with credit being given to Health and Welfare Ministries and the authors. These focus papers were written several years ago there some information is outdated.

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