"This hope we have as an anchor of the soul..." -- Hebrews 6:19
Romans 8:35, 37-39. "Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? But in all these things we overwhelmingly conquer through Christ who loved us. For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God, which is in Christ Jesus."
There is hope for people with HIV infection! We are learning to survive for longer periods of time. The first big step is believing that you can be among the (as yet) small percentage of those who are beating the odds. You can believe that God wants you to be healthy, active, and living a full quality life. You can believe that God is still healing people, even people with HIV! GOD IS GREATER THAN AIDS!
Longterm survival of HIV infection is becoming a greater reality with the development of new medical treatments. There is a great deal that you can do to create the conditions for your physicians' medicines to work, and to increase your quality of life, as well as your length of life.
In a paper from the University of California, San Francisco, School of Medicine, George F. Solomon, M.D., Lydia Temoshok, Ph.D., Ann O'Leary, Ph.D., and Jane Zich, Ph.D., describe "An Intensive Psychoimmunologic Study of Long-Surviving Persons with AIDS." The purpose of the study, conducted in 1987, was to understand how longterm survivors are different from people who follow the expected course of the disease. The paper states, "While the prevalent belief is that AIDS is invariably fatal, there is a growing number of individuals who are alive and well three, four, and even five years after an AIDS diagnosis."
A number of common factors thought to be significant to longterm survival were described. Here, these factors will be related to scriptures and spiritual principles, which serve as a guide for further exploration and study.
No longterm survivor perfectly fits all the attributes listed in the study. And illness progressed in plenty of people who followed many of these principles. There are no guarantees! Therefore, these principles should not be used as a weapon against yourself, to make your life more stressful than it already is; but as a guide to creating quality of life, as well as length of life.
II Corinthians 4:7-10. "But we have this treasure in earthen vessels, to show that the higher power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies."
All of us will die someday, and with HIV, that seems a more pressing reality. But in accepting the inevitability of death someday, we strengthen our resolve to live life more fully in the here and now. Thus we can acknowledge and deal realistically with the diagnosis of a life-threatening illness, and still maintain courage and hope to survive. We can believe in the promise of abundant life, shown through the Resurrection of Jesus Christ. You can stubbornly insist on living!
2. Longterm survivors believe that they can cope actively with the disease, and refuse to succumb to a "helpless-hopeless" state.
Mark 5: 25-29; 34. "And there was a woman who had had a flow of blood for twelve years, and who had received treatment from many physicians, and had spent all that she had, and was no better but rather grew worse. She had heard the reports about Jesus, and came up behind him in the crowd, and touched his garment. For she said, 'If I touch even his garments, I shall be made well.' And immediately the bleeding ceased; and she felt in her body that she was healed of her disease... And Jesus said to her, 'Daughter, your faith has made you well; go in peace, and be healed of your disease.'"
Hopelessness happens when we feel helpless to do anything about our condition. But just as the woman in this story (a scriptural longterm survivor!) went to great lengths for twelve years to try and heal her condition, there is a lot you can do to help yourself survive for years! Prayer, meditation, exercise, good nutrition, getting the rest you need, keeping informed of the latest developments in treatment of HIV, staying involved, and making sure you laugh every day are steps that you can take towards actively coping with HIV.
3. Longterm survivors make appropriate, individualized adjustments in personal habits and behaviors to accommodate living with the disease.
II Corinthians 5:17. "Therefore, if anyone is in Christ, that person is a new creation; the old has passed away; behold, the new has come."
When you are diagnosed with HIV, it feels like everything changes. Suddenly you find your perspective changing, priorities may change, some habits may need to be broken, and good habits formed. To be a new creation in Christ, living with HIV may mean examining all kinds of behaviors and attitudes that are keeping you from being the fully alive person God made you to be!
4. Longterm survivors see the physician as a collaborator, and take an active part in decisions related to treatment. There is a sense of personal responsibility for health, and a belief that they personally can influence the outcome of the disease.
Genesis 2:19-20. "So out of the ground God formed every beast of the field and every bird of the air, and brought them to the human to see what they would be called; and whatever the human called every living creature, that was its name."
One understanding of this part of the Creation story says that we human beings are co-creators with God: we are partners with God in caring for Creation. Similarly, we are co-creators with our physicians of our wellness. We are partners with our doctors in creating the conditions for healing and wellness. It is important to find a physician who understands this, and seeks your active participation in decisions related to treatment.
5. Longterm survivors show a "commitment to life": there are unfulfilled goals, dreams, or unfinished business.
Deuteronomy 30:19. "Therefore, choose life."
II Corinthians 1:8-10. "For we do not want you to be ignorant of the affliction we experienced... for we were so utterly, unbearably crushed that we despaired of life itself. We felt that we had received the sentence of death; but that was to make us rely not on ourselves but on God who raises the dead; God has delivered us from so deadly a peril, and God will deliver us; on God we have set our hope that we will be delivered again."
We believe in a God of life, as shown to us in the Resurrection of Jesus Christ. It is life-giving to focus on the goal of "the prize of the upward call of God in Christ Jesus." (Philippians 3:14) Many people with HIV have gone back to school to earn or finish a degree. Some have stayed alive with the hope created by an exciting project that they always wanted to do. Identify your dreams and goals and pursue them!
6. Longterm survivors find meaning and purpose in life and even in the disease itself.
II Corinthians 4:16-18. "So we do not lose heart... For this slight present affliction is preparing for us an eternal weight of glory beyond all comparison, because we look not to the things that are seen, but to the things that are unseen; for the things that are seen are temporary, but the things that are unseen are eternal."
It is life-giving to look for the meaning in life, to ask questions like "Why do people suffer?" The Psalms are full of laments of people who keep asking where God is, or why God is allowing this to happen. Through much of the book of Job, Job rails against God, demanding an explanation from God for the seemingly pointless sufferings of his life. So ask the questions! Try to find answers! It is a healthy pursuit, and you are in good company!
7. Longterm survivors have usually had a previous experience with beating a life threatening illness, or overcoming difficult situations and events.
Romans 5: 3-5. "...We rejoice in our afflictions, knowing that affliction produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit which has been given to us."
For those of us with HIV who are Gay or Lesbian, coming out may be the difficult passage that taught us we have the strength and faith to face life's challenges, including physical and spiritual challenges like HIV infection. Many people with HIV who are recovering alcoholics or addicts report that the tools they use to achieve and maintain sobriety have given them excellent coping skills for life with HIV.
8. Longterm survivors report the importance of support and information from other persons with HIV, and furthermore, are usually involved in active service to other persons with HIV.
Matthew 18:20. "For where two or three are gathered in my name, there shall I be also."
I Corinthians 12: 7; 26. "To each is given the evidence of the spirit for the common good... If one member suffers, all suffer together, if one member is honored, all rejoice together.
When you are newly diagnosed with HIV, there is no one who understands what you are going through quite like another person with HIV. The information network among people with HIV has for many years been one of the most important survival tools available. And many people have discovered the value of getting outside of themselves by actively getting involved with HIV/AIDS work. It is life-giving to be involved with other people, to be a part of a community, to feel you are doing something to help when some people expect you to feel helpless! It is in community that we encounter the Risen Christ.
9. Longterm survivors are assertive, can say "No," and withdraw from involvements when self-care becomes necessary.
Ephesians 4:26. "If you are angry, let it be without sin: Do not let the sun go down on your anger."
Matthew 14:23. "And after Jesus had dismissed the crowds, he went up on the mountain by himself to pray. When evening came, he was there alone..."
It has long been noted that people who survive life-threatening illnesses against all odds are the ones who are assertive about their needs. This may mean getting angry and demanding your rights as a patient in a hospital. It may mean demanding your right to withdraw and nurture yourself when you need to rest. Now is the time to give yourself those things which feed you emotionally and spiritually, as well as physically.
10. Longterm survivors develop an ability to read their body, sensitively care for it, and communicate openly about their concerns.
II Corinthians 12:7-9. "And to keep me from being too conceited by the extraordinary revelations, a thorn was given to me in the flesh... to harass me, to keep me from being too proud. Three times I begged the Lord about this, that it should leave me; but God said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' I will all the more gladly boast of my weaknesses that the power of Christ may dwell in me."
Even with the best self-care program and the greatest faith, people with HIV experience infections and illnesses. It is important to be aware of the body's signals, and to be assertive about communicating concerns to a health care professional. Times of illness, which can produce great fear and anxiety, can be transformed into opportunities to experience God's living grace. When you're sick, it's easy to feel down, and wonder what you did to deserve this. But God didn't give you this illness. A virus did. God is with you!
Isaiah 41:10. "Fear not; I am with you. Be not dismayed; I am your God. I will strengthen you, I will help you, I will uphold you with my victorious right hand."
More and more people are living longer and longer with HIV infection, and are enjoying full, exciting lives. Many people with HIV and AIDS have learned through their diagnosis to embrace all of life, including illness, and even death. And that, by God's grace, allows us to be joyfully alive, even with HIV infection.
It is only when we can truly embrace the inevitability of death that we can fully embrace the truth of the Resurrection. And that truth tells us that when we live with a life-threatening infection like HIV, we believe that the Risen Christ, Immanuel, God-with-us, is alive, here and now, helping us to transform our pain, fear, and anger into life-giving, creative action.
Look for God's grace every day. Look for evidence of the Resurrection! Believe in God's love for you, and in turn, share that love with others, and that will give you life.
To paraphrase Paul, "I am absolutely convinced that nothing in life, not even AIDS, not even death, can separate us from the love of God in Christ Jesus."
Psalm 57:1. "Be gracious to me, oh God; be gracious to me, for my soul takes refuge in you; and in the shadow of your wings I will take refuge, until destruction passes by."
This was written by the Rev. Dr. Stephen Pieters, a longterm survivor (since 1982) of HIV infection. Although diagnosed with full-blown AIDS, Kaposi's Sarcoma, and lymphoma, he experienced complete remission of his cancers while on an experimental drug, suramin, in 1985, and has been clinically well in all respects since 1986. Pieters is the Field Director of AIDS Ministry for the Universal Fellowship of Metropolitan Community Churches. Note: The study quoted is published in The Annals of The New York Academy of Science: 496: 647-655, 1987. Scriptural quotations are paraphrased by Rev. Pieters, based upon comparison of various translations.
For more information, write or call:
The UFMCC AIDS Ministry
Universal Fellowship of Metropolitan Community Churches
5300 Santa Monica Blvd., Suite 304
Los Angeles, CA 90029
(213) 464-5100; fax (213) 464-2123.