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AIDS: The Journey




Twenty-one-year-old Odetta was literally wasting away when I met her. I could see her breastbone and ribs protruding from her skin under a loosely buttoned olive-green plaid shirt. She had striking features and a small S-shaped tattoo on her forehead, but her skin was scaly, and her eyes were sunken and tired. She was the same age as me, yet she had been living with HIV for the past six years. I felt I was just beginning my life, but Odetta was in the final weeks of hers.

Her story is tragically common. She had been sent away at 14 to do an apprenticeship in the city. During that time, she had been taken advantage of by the men in the family that took her in, and this sexual violence had resulted in a death sentence. She began showing signs of sickness years later, and it wasn’t until the third hospital visit that someone revealed she had HIV. But this was not given with any explanation, and Odetta’s family quarantined her due to misunderstanding. She wasn’t allowed to sleep or eat with them, as they were scared that they too would catch this strange disease. Odetta was basically confined to her house for three years until a Christian counselor came to visit and corrected the myths. By that time it was too late; AIDS had advanced, and no antiretrovirals were available to Odetta.

I did not know anything about AIDS when I first started gaining cross-cultural experience through short-term trips. The epidemic has existed along the same timeline as my life, yet somehow it was a distant reality. I met Odetta when I was living in West Africa three years ago. I was volunteering for a missions organization and writing a series of articles on the slow but steady AIDS crisis in the country of Benin. During that time, I met numerous people living with the disease. And within a few months of my leaving the country, they had all passed away.

Their images and stories spur me on to this day. I can clearly picture each one of them: The frustrated prostitute who bluntly told a nurse, “If I can’t f—, I can’t eat.” Elegant Esther, who shed no tears and raised no objection at the revelation that she had “the death,” as she called it; she simply accepted her fate with silence. Guilt-ridden Rhoda, who could understand that she had to face the consequences of running around, but could not under any circumstance process the fact that her son had died as a result of her choices. Joyful Fati, who was physically wasting away but emotionally renewed by the birth of her beautiful baby boy. And poverty-stricken Elie, who had been set up by his congregation to marry a recently widowed woman only to lose her seven years later to AIDS. When he died, he left two children behind—the 2-year-old would soon also die of AIDS, leaving the 6-year-old as the sole survivor of the family.

I was presented with a myriad of situations, and I quickly learned that any preconceived notions I had of these individuals always proved to be not only wrong but overly simplistic. AIDS was not, as I continue to hear in the United States and abroad, “a disease for sinners.” As soon as I silently blamed Elie’s wife for devastating her entire family, I found out that she had been infected by her late husband. As soon as I wondered if Esther had been unfaithful, I realized she was only one of her husband’s many wives. As soon as I despised the prostitute for sleeping with whoever could pay, I recognized I would likely do the same thing to feed my children.

AIDS is a defining mark of our generation, and we will be seeing the effects of it for the rest of our lives. Even if new infections were halted today, the resulting broken economies, nonexistent working-age populations and immeasurable numbers of orphans will make for a catastrophic next several decades, if not centuries.

Bono once said, “The attention of the world might sometimes be elsewhere, but history is watching. It’s taking notes. And it’s going to hold us to account, each of us.” I would add that—for anybody who claims to be a Christian—God will also hold you to account. In fact, His biblical mandates clearly align with relieving the burden of AIDS—living lives of purity, caring for orphans and widows, providing acceptance and love to those struggling. The list goes on, but the fact is this journey is required.

The Work Ahead

The first stop on the journey must be gaining understanding of what AIDS really is, why it exists and who is affected by it. I sought understanding in Benin, and found that to truly understand meant to experience pain. You simply cannot see someone dying of AIDS and not have compassion on them, especially if you believe that there is a God who loves them and has a purpose for their lives. The problem with compassion is that it literally means “to suffer with.” Henri Nouwen wrote, “Compassion asks us to go where it hurts, to enter into places of pain, to share in brokenness … to mourn with those who are lonely, to weep with those in tears.”

We all have to come face to face with the hurting world to understand how to best combat AIDS. We have to meet the beautiful individuals, either locally or overseas, who make up the overwhelming statistics. As leaders, we have the responsibility to bring this understanding to our community.

The second stop on the journey is to reflect on our own attitudes and vulnerability in light of the AIDS crisis. During my visit with Odetta, she had energetically displayed a dress she made and proudly told me how many clothes she had been selling. She had complimented me on my sandals and joked about going into business together. I was immediately struck by how similar Odetta and I were in the end. So why wasn’t I born into a similar social or economic situation? Why did I have the privilege of living in a situation where I was so removed from the impending doom of AIDS?

I had the unsettling realization that the actions of my friends in the United States and those of the millions contracting HIV around the world were not really so different. During college, it was not unlikely for those around me to sleep with five people over the course of four years. In fact, that was far from being considered “promiscuous.” Yet if you transfer these same behaviors to South Africa, any college student who sleeps with five people is statistically likely to have slept with someone who is HIV-positive. If the same socially acceptable behaviors in the United States are literally wiping out a generation on the other side of the world, how can we even consider pointing fingers? I had to face the reality that my peers were escaping death simply due to geography.

AIDS is a completely preventable disease; it is a disease that continues based on human behavior. We must all lead lives that are conscious of that fact. If AIDS is preventable, I must lead a life that shuns the continuation of the cycle, whether or not I am statistically at risk. I was forced to re-examine my own attitudes about sex and relationships. I may not have been sleeping around, but I still had non-evident, deeply rooted nonchalance about surrounding issues. Many of the twentysomethings in your group may display the same nonchalance. They need to be aware of the gravity of their attitudes and actions.

As we begin to understand and identify with AIDS, we have to be careful to avoid the dangers of denial and indifference. The interactions we have with those affected by AIDS will likely result in pain that may, at times, be paralyzing. It can be far simpler to forget what you now know and have seen—or, worse, to be unmoved by it.

“I was completely unprepared for the pervasiveness of death,” wrote Stephen Lewis, U.N. special envoy for HIV/AIDS in Africa. “It has shaken me to my core. I must admit that from time to time the enveloping cloak of death, combined with the appalling paucity of response, has made me feel futile in the face of the pandemic. I never submit to those momentary lapses because futility leads nowhere, but the way in which death seeps into every crevice of life shifts one’s view of the world.”

I was temporarily frozen in the reality of death all around me, and I have often felt it would be easier to revert back to life before I confronted such suffering. My time in Benin scarred me deeply, but it is a scar I am grateful to bear. Because after meeting those individuals, I could not turn away from the crisis, no matter how tempting it was.

I still don’t understand why AIDS exists, and I still don’t understand why so many innocent people die from it each day. But I have realized that my sparse knowns trump these unknowns. I know that God is good, and I know that I’m required to be the physical, outward force of that goodness. Therefore, despite the ongoing internal battle, I’m left with only one choice: to move forward.

The third stop on the journey must be to take outward action. AIDS is an unprecedented catastrophe, and it’s unacceptable for us to choose not to act in some way. The magnitude of the disaster requires that we ensure that whatever time and energies we do contribute are spent wisely. I realize that involvement with AIDS does not mean that we can do everything, but we can do a lot more. Last year Samuel, a 20-year-old volunteer in Kenya, told me, “If you’re not infected with HIV, you are affected. So, while you are alive, you must do something.”

See Also

Take Action

Everyone has a role. You can be involved by simply talking about AIDS and the surrounding issues. Time and time again, I’ve seen examples of how just speaking about the epidemic and its causes has broken down walls. The stronghold over Odetta’s situation was silence. Stigma has a hard time existing in an open, honest environment. Once stigma is eliminated, you have a shot at destroying disease.

Your group can get involved locally. There is not a section of the world that is unaffected by AIDS, and that includes your city. Find out what different organizations and churches in your area are doing and join them. Cross-cultural experiences can be found in your back yard, and these individuals have the same stories you will find around the world. You can partner financially with organizations that have a plethora of experience.

You can also encourage your group’s involvement through an overseas trip. If you’re planning to go overseas, you need to first know the facts and ask the deeper questions. You need to be clear about whether what you are going to do is contributing to long-term sustainable interventions or hindering them. The best of intentions do not always translate into effectiveness. My international glimpses were crucial for encouraging personal reflection and growth, but this cannot be an end in and of itself. The experiences you gain should be a springboard for more intentional long-term interaction.

Whatever your community’s level of involvement, twentysomethings need to establish support and accountability systems. They need companions on the journey. They need friends with whom they can be frank about their sexual beliefs and behavior. They need mentors who will encourage them to continual action.

Most importantly, we all must walk the entire journey in a learning posture. Though I am daily involved in AIDS work, it is not any easier for me to understand. In fact, the intricacy of it all keeps me up at night. AIDS is never an isolated problem. It is inevitably present in a context that can include poverty, gender inequalities, political instability, conflict, spiritual oppression and animistic beliefs. If HIV is believed to be a curse, people will not change their behaviors. If programs create dependency through external food rations or educational support, churches will never have the privilege of meeting their communities’ needs. We need to be ever conscious of the emerging trends and root issues of this crisis, and be willing to learn and flex along the way.

A Change Is Coming

The most rewarding part of the journey is that you start to catch glimpses of change and progress. I have seen college students in the United States attending seminars to learn how to be involved; I have seen youth in Mozambique committing to wise choices for their lives; I have seen orphans in Haiti participating in schools and playing with others like ordinary children; I have seen people with AIDS in Rwanda gaining newfound strength and reintegrating into society thanks to the miracle of antiretroviral treatment. At the center of working with AIDS, there is joy.

Joy resided in Odetta the day I met her. Although she was physically disintegrating, she was spiritually whole. Over the few months preceding my visit, the dedicated counselor had not only given her knowledge about her disease and an opportunity to talk openly about it, she had also told her that there was a God who was with her through it all, and Odetta had believed her. Through small things, like Odetta’s shy smile, it was evident that her spirit was triumphing over her body. Before we left, Odetta and the counselor sang, “Rejoice in the Lord always.” I thanked Odetta, hugged her and walked away. Four weeks later, Odetta died.

JOANNA MAYHEW lives in Baltimore where she works as HIV/AIDS grants coordinator for World Relief. www.wr.org

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