The struggle and agony of Susan: Jesus’ passion as experienced by people living with HIV & AIDS

By PASCALIA SERGON (AJAN)

One day I went to visit a support group for people living with HIV & AIDS (PLWH). But I decided to pass by the district health Hospital; specifically to the link-desk that doubled up as the Comprehensive Care Clinic –CCC (This was part of my job as the programs’ officer of one of the implementing partners for USAID). As usual, the link desk was a beehive of activities; between those who came to replenish their supply of ARTs, those seeking transfers from other hospitals and many others. Jane (not her real name) was the staff in charge of the link desk and assisting at the CCC. She was also the lady responsible for the support group of PLWH and the one I came to see.  I found her attending to a long queue of her clients whose numbers kept increasing.

Not wanting to interrupt, I sat at the corner of the room perusing through her documentations and reports for the month (that was part of my supervision work). From where I was seated I noted a young woman; I would put her age between 20-25 years, at the furthest opposite corner,  and  she was not moving with the queue. She appeared to be struggling to stifle a burst. Her eyes were red, tears rolling uncontrollably. She looked distressed and exhausted. After quite a while, when the queue was finished, Jane invited the young woman to move closer. The conversation went like this:

Jane: “Welcome mama, it is ok, come closer, what is your name?”

Amid tears, she responded “Susan” (not her real name)

Jane:  “how can I help you?” At that point, Susan became hysterical and burst into loud sobs

 When she was able to gather herself again, she said amid sobs “I have come to be tested”

Jane: “what makes you want to have a test?”

Before answering, Susan scanned the whole room, and hesitated to talk

Sensing her discomfort, I left the room and sat outside under a tree and continued my work from there. Shortly before I was done with what I was doing, I saw Susan coming from another room, looking confused. She came and sat not far from me.  Her stare was blank and the silence loud. Suddenly, she spoke, almost to herself, but loud enough for me to hear.  She said “the only thing I want now is to die, how am I going to live with this? I am so scared. I have two very young children. I am afraid for them. If I die now, what will happen to them? I feel like killing myself, I cannot live with this virus, but what about my children? Where am I leaving them? Who will look after them?

I was startled. I was witnessing a kind of ‘transformation’ of a human person to hopelessness and pain.  I had this image of witnessing someone who suddenly falls into a huge dark man-hole where there is no hope of ever coming back to a world s/he knew before. A state of perpetual fear of what tomorrow will be like, fear of death, uncertain future of their children, stigma and discrimination and fear of losing control of her life. It strongly occurred to me that that is the reality PLWHV battle with daily. Worst still, they do not fall in this dark hole alone; they carry with them their dependents; their children and immediate family members.

Unfortunately, none of us outside of the ‘dark man-hole’ understands what goes in there; we have no inkling at the inner struggles of PLWHV, their constant fear of death, fear for their loved ones and fear to face the society. We nevertheless try our best to support them, in whatever dimensions possible, be it, spiritual, social, health, economic or otherwise.  These however do not reverse the reality of their condition.  At best, our interventions help them pacify their spirit and calm their fear.  They   help them get used to their darkness and find their way around it! 

On Good Friday, we commemorate the passion and death of Christ. Every year Christians are called to remember the struggles of Jesus, a time to bring to attention lest we forget the pains, the fears and tears shed by Christ. John (18: 1-19; 42) narrates the long night that Jesus went through, the horrid painful experience in the hands of the leaders and his community. Earlier, Jesus had implored God to spare him the eminent death and if not, to have the courage to face it (Lk 22:41-44). This might have been the darkest and longest night of his life. A night of anguish, physical pain and emotional distress of being rejected by the people he cared for. The fear of being publicly disgraced, insulted and disowned by his own people. He faces the harrowing pain of betrayal by the greater masses who watch him from a safe distance; some helplessly, others pitying him as a failure and a social misfit. He went through the agony of death; fearing for the future of his mother (whom he appealed to John to look after her).

This is not something that happened more than 2,000 years ago. It is a reality that plays out every day in our own time. In Africa, according to 2017 UNAIDS report, over 25.5 million people in Africa live with HIV & AIDS, not mentioning the affected, who suffer with them.  Jesus is living out the same experience over and over again in our brothers and sisters living with the virus. Every day, another Susan is added into this number. To them, the Good Friday is not a commemoration; it is not an event to be recalled. It is a lived reality, not for a few days in the year; it is throughout their whole lives!

Then the big question is: what is our response to this reality? Like the time of Jesus, we observe a world posing the same attitude and trends. Of creating the victim, and commemorating the actions of the same victim and in between, the perpetrators; could be community, leaders both religious and political, only stand at a distance watching with pity or empathy and refusing or powerless to take an affirmative action, political or otherwise on behalf of the suffering persons who cannot get themselves out of the situation.

But still, there are so many Veronicas, (individuals, families, church and community organizations), who in their small ways try to offer relief to victims (of HIV AIDS), using whatever means available to them; they have stood by them and still are. They offer the moral, social, economic and medical support they need to make life bearable to them.

On its part, African Jesuit AIDS Network (AJAN), for the last 15 years has stood by those infected and affected where they are; offering the best support available to them. It has taken the option for the victims of HIV & AIDS, the option to remain steadfast even when the world is shifting its focus away from the reality of HIV & AIDS. It will continue to do so as long as it takes, until the fight is offer.  AJAN “will be the last to quite the scene” ( Fr. Orobator, president of the Conference of Africa and Madagascar).

As we relive the passion of Christ, let African leaders; let the church in Africa be continuously reminded that this agony and death experience is lived concretely by over 25 million people in Africa. As followers of Christ, we cannot afford to stand at a distance, contended with the bare minimum that we can offer. This reality must inspire all of us to rise and take a more concise affirmative action to find a lasting and homegrown solution to the menace. Otherwise, how can the commemoration of the passion of Christ have a meaning if we are deaf and imperceptible to the pains and agony of those we live with? If we are indifferent to Christ living an HIV experience in our brothers and sister?

Click here for French Version: La passion de Jésus à travers la vie des PVVIH