How do we provide care within our faith in the field of HIV and AIDS? – By BY Merab Kambamu Kiremire
A PERSONAL LIFE EXPERIENCE BY MERAB KAMBAMU KIREMIRE
Theme: (But the teacher of the law ——— asked Jesus, ‘Who is my neighbour?’ And Jesus concluded, ‘in your opinion, which one of the three men acted like a neighbor towards the man attacked by the robbers?’ The teacher of the law answered, ‘the one who was kind to him.’ Jesus replied, ‘You go, then, and do the same’) Luke 1029.
At individual level – Burn-out, stigma, determination, perseverance, endurance, faith, hope, survival
At a broader level – HIV and AIDS, support services, Care-giving, Faith Communities
Background – For over a decade, between 1996 and 2006, I spent over 6 years living in a house all by myself.After teaching at the same University for close to a quarter of a century, my husband had decided to change jobs in order to advance his scientific research interest at a time when I was still heavily engaged in operationalizing an HIV and AIDS focused community-based organization (CBO) I had initiated a couple of years earlier and was therefore not in a position to leave it.This career move also happened to coincide with other life-changing events in our lives.Apart from endless struggles against perpetual xenophobia to stop me from running a CBO and the empty-nest syndrome which had, for sometime been slowly been knocking on our door, back in my country of birth, death had decided to aggressively hit my family, taking my three younger sisters, my mother and a well loved six-year-old niece one after another.This complex combination of situation culminated in a cumulative high degree of insecurity that put my nerves on the alert 24 hours a day.If not for bad news that could reach me any moment, fear of possible physical danger became part of my daily living.So as a safety measure, I developed a habit of always resting or sleeping with my lights on and my cell phone right under my pillow whether in a couch or bed. This state of affairs went on until 2006 when I finally felt my CBO was strong enough to endure my absence and joined my husband. However, as the old adage goes, habits die hard.To this day, I still rest or sleep with my lights on and my cell phone right under my pillow.
Case Study – It was against this background that one late night in October 2009 my cell phone rang.As I pulled the phone from underneath my pillow to answer, I was sure that all was not well.Experience had long taught me that a telephone call at 0230 hours in the dead of the night could hardly be a carrier of good news. The only question was what type of bad news?
Amidst sobs, the breaking voice at the end of the international waves sounded dreadfully faint, close to a whisper: ‘Good bye, your niece will tell you the rest’, as the phone cut off.
With trembling hands, I quickly dialed my ailing sister’s husband telephone number.He promptly answered.The gentleman sounded so cool, so composed that for a flick of moments I concluded he couldn’t possibly be anywhere near his wife, leave alone know her condition.So I gently ventured, ‘are you at home sir?’ ‘Yes’, he answered.‘Are you with my sister’, I politely continued.‘Yes’.‘But what’s going on, she says she is dying?’ I slowly added. ‘I don’t know.She has been well since she was discharged from the hospital a month ago until this evening when she started complaining about pain in her abdomen’. ‘I am sorry to bother you sir, but may I request you to most kindly take her to the hospital without any further delay – will you Sir, please?She sounded in the last moments of her life and it might be better that she dies in the hospital so that doctors can attend to her body in dignity.Please’.‘Ok, I will take her immediately.’
My eyes affixed on the ticking hands of the wall clock directly opposite my bed.Being my age, I can’t say I had not lived through tediously long hours before, but the two hours I endured to what I figured would be day-break back home will truly find a lasting space down my memory lane.
As soon as I confirmed that my sister had lived to see another sun-rise, I phoned my 90-year old father and requested him to immediately send my step mother to go and nurse my sister in hospital.Without hesitation, the lady got ready and by 0800 hours, she was on the bus heading 400km west of the capital city. By the afternoon, she had joined the line of hospital health workers who worked around the clock to save my sister’s life from a bout of rising AIDS-triggered sugar.
The seven days that followed were not only a nightmare but a test of human patience, perseverance, endurance, hope and faith.I prayed, not only for my sister’s life-restoration but for her 15-year-old daughter who was due to join Secondary School in the new-year.I couldn’t image what it would be like adding another orphan to the 6 young boys my husband and I were already caring for. And yet there was my old father in a house alone without anybody to care for him. The constant nagging in the back of my brain couldn’t go away.Was I about to bury two close family members at virtually the same time again?Day in and day out, I could hardly think right, eat or smile.Every step I made felt extraordinarily heavy, so heavy that it felt as if I was hurting the ground I walked on; and every phone conversation I had with my father just broke my heart.The poor frail man was in constant tears.Listening to him weeping through the phone convinced me that history was about to repeat itself. Not only was I about to lose one more loved sister, but my father too.Memories were still fresh.I recalled the day my mother and I walked had walked hand-in-hand up the Cathedral Hill to bid farewell to our well-loved daughter and sister.My mother had insisted on walking to the Cathedral. As we had briskly ascended the steep hill, she had affixed her tear-dripped face towards the heavens and softly sang, ‘coming home, coming home, Lord I am coming home’.It had been the last time I had walked with my mother.She had grieved her daughter’s death to her grave five months later.
My spirits were rapidly waning away, washing away every grain of faith and hope that had held my inner fabrics together through the past crisis years.I felt tired, sad, angry, bitter and desperate. I couldn’t understand why my family had to endure so much pain and hurt.What was it that we had done to deserve all this suffering?Why us?Yes, it was true that in close to three decades, HIV and AIDS had afflicted millions of individuals, and devastated numerous families and communities and nations.But it was also true that it had not affected the majority of the World’s people. So why us, why my family, why my sisters? Why did we have to be among the 40 million World’s people afflicted by the HIV and AIDS pandemic? Were we cursed, and if so, for what? What had we done to displease God so awfully that He had turned His face away from us, forsaken us? Were we Job?
I was still struggling with my internal conflict when I received news that my sister had had a respite. So I requested her doctors to, as soon as they felt confident she could endure the 400km bus drive to the city, kindly discharge her so that she could be closer to specialized treatment and my father’s wife could care for him.But by the time my sister arrived in Kampala, she was so wasted that all my father could do was to cry. To make matters worse, she felt so hopeless that she refused to go to hospital.She remained in bed and didn’t want to see anybody.She told whoever tried to take her to hospital that she was ready for the ‘next life’ and that she was sorry for all those human beings who were not prepared for life after this earth.Gross stigma had taken its toll. Her body became nothing but bones, her legs erupted into sores she could not stand.All of us near and far were devastated. We lost hope.Everything was out of control.
Then a miracle happened.At the end of October while CUAHA (Churches United against HIV and AIDS in Eastern and Southern Africa) was launching its handbook, ‘Towards an HIV and AIDS Competent Church’ at a media forum in Nairobi, I met a man I had often heard about but never had an opportunity to meet.Rev. Canon Gideon Byamugisha, the founder of INERELA (International Network of Religious Leaders Living with or personally affected by HIV and AIDS) had just arrived in Nairobi from Uganda travelling to Western Kenya to attend the burial of one of INERELA+ members who had passed away a few days earlier.CUAHA leaders had quickly grasped the opportunity and requested him to briefly join the media forum which had followed the handbook launch.The media forum room was packed but I picked a chair and kept creeping closer to the high table in the hope that I would be able to talk to him.
Finally, I came face to face with Africa’s first religious leader who had confronted HIV and AIDS head-on when hardly anybody survived it.Looking at him narrate his own experience, I got convinced he held a key to my sister’s situation.As soon as he completed his short address and stepped down to chat with the media practitioners I stepped forward towards the group.But time was against me.The Reverend’s host was summoning him to rush to catch a plane.So I quickly stretched out my hand, introduced myself, mumbled something about our collective gratitude for his unique efforts to beat HIV and AIDS-based stigma and delivering thousands upon thousands of hopeless Africans from unnecessary premature death. I then told him I had an urgent assignment for him.Would he find time to go and pray for a woman who was dying from AIDS- a female patient as soon as he returned to Kampala and slipped a piece of paper with my sister’s cell phone number into his hand, adding, ‘even if she does not recover, at least she will die in peace’.
Two weeks later, my sister phoned me to inform me that she felt uplifted and hopeful again.An Anglican Reverend who, together with his wife, had lived with HIV for many years had visited her.He had been accompanied by a Kampala medical doctor renowned for taking good care of people living with HIV.After praying and encouraging her that ‘there was life beyond ÁIDS’ the doctor had taken her for a thorough medical examination.The results had revealed that while both her heart and lungs were still in good working condition, her other key internal organs, the liver, kidney and pancreas, had been badly damaged.Her situation was so bad that her pancreas would require surgery in order to sustain her.However, with her body wasted to the extent it was, she was not in a position to withstand surgery.So the doctor had prescribed remedial medication to sustain her until such time as her body was strong enough to endure surgery.
That was five months ago.My sister has not undergone pancreatic surgery yet but has recovered well enough to return to her home and job.She recently registered to study a degree in Theology a University in Uganda. She recently held discussions with her Archdiocese Bishop on ways of working with school learners and their families to combat HIV and AIDS driven stigma in her community. She is no longer on her death bed.Instead she is hopeful and sees her HIV status as an opportunity to serve humanity. She, like her mentor and counsellors, Rev. Byamugisha and his doctor friend, now believes in ‘life before death’.
Her husband has asked her for forgiveness for giving up on her and enjoying a good night’s sleep while she faced death.Last weekend she travelled 150km to a boarding secondary school to visit one of our late sister’s orphans.The two boys, now aged 20 and 19-years respectively lost their mother when they were infants and their father last year in October. While she was with the boys, she phoned me so I could talk to them.Tears of joy rolled down my face as I talked to the three of them on the phone one after another.All I could do was to thank God for His little mercies and abundant grace.Job’s personal experience had become a reality in my own life, ‘I know Lord that you are all-powerful; you ask how I dare question your wisdom, when I am so very ignorant; I talked about things I did not understand, about marvels too great for me to know – now I have seen you with my own eyes — I am ashamed of all I have said’ (Job 42-6).
Contextualization – Shortly after that I was privileged to convene a meeting of CUAHA stakeholders with a view to forming CUAHA Namibia country team.At the beginning of the meeting, the representative of the African Methodist Episcopal (AME) Church informed the gathering that he had decided to come to that meeting to join forces with other Churches to better fight HIV and AIDS, and in so doing, answer Jesus Christ’s call, ‘who is my neighbour?’ (Luke 1029). He strongly believed that it was still possible for the contemporary Church, to, just like Jesus Christ who, during his three years’ ministry, not only spread the good news of God’s mercy and love by word of mouth alone, but walked miles and miles feeding the hungry, healing the sick, restoring sight and hearing for the blind and the deaf, and resurrecting the dead, to deliver God’s people from the pangs of HIV and AIDS.He emphasized the need for Church leaders to ‘move from talking to practical actions that will restore hope among the hopeless, faith in the desperate, life in the weary and energize God’s people to beat HIV and AIDS.He proposed that the Church must rise to equip people living with HIV, their families, communities and nations, with the most appropriate information on HIV and AIDS that enables them not to lose faith in God and hope in life.His sentiments were echoed by Bishop Komeeta of the Evangelical Lutheran Church in the Republic of Namibia who told a gathering of interdenominational religious leaders that, ‘For us as church leaders, we are faced with an enormous challenge – to lead our people and their care-givers out of the bondage and silence of HIV/AIDS and its stigma’.In this connection, the Church needs to fully recognize the importance of building adequate capacities among health workers, home-based caregivers and field workers through training and knowledge creation.
Lessons learnt – Sitting there internalizing this Church leader’s analysis and practical proposals on the measures the Church needs to take to become HIV competent, I couldn’t agree with him less.Indeed, with such practical approach, people living with HIV like my sister could be prevented from slipping into deadly stigma characterized by hopelessness, despair and premature death.Not only did practical interventions that followed her ‘intended last words’ serve to prevent her from unnecessary death, but they mobilized critically needed resources and expertise to come to her rescue.Markedly, the level of willingness and self sacrifice that was demonstrated by the many players during her critical condition was phenomenal.The hospital personnel had swung into immediate action; age and lack of adequate social capital did not deter the old man and his wife to move swiftly into action; Rev. Byamugisha and his doctor-friend did not hesitate to avail their valuable time, financial resources and expertise to rescue a dying woman who was a stranger.Close family members and care-givers like her husband and I who could be spared the impact of burn-out that leads to neglect, irresponsibility and eventual regret.
Conclusion: To-date, HIV has no known cure.However, as a predominantly behaviour disease, it need not kill those it afflicts, nor devastate its secondary victims. Being HIV positive is not the same as having AIDS; and having AIDS is not the same as dying.Individuals, families, communities and nations can control, not only the spread of the HI virus but manage AIDS, the disease it produces. All it takes is concerted and better coordinated human efforts.Faith driven efforts have a central role to play in reducing its spread and encouraging and motivating both the infected and the affected. To this end, the Church and faith organizations have a critical responsibility to respond to the holistic needs of their congregants and communities – that is educational, social and economic and spirituals needs, to restore not only their souls but physical and mental health.
Good News Bible. 1994. Job. Korea. United Bible Societies.
Good News Bible. 1994. Luke. Korea. United Bible Societies.
Hannu Happonen, Tomi Jarvinen, Juha Virtanen (Eds). 2009. Towards an HIV and AIDS Competent Church: an ecumenical handbook for defining HIV and AIDS competency. Finland. CUAHA.