I lost my younger sister, Regina Kizza. The immediate family battled her nest of illnesses but failed. She died on July 27th 2017 and was buried 29th July, 2017. She was in hospital for five months. Hospital became her residence alongside many other patients with different diseases that too were firm threats for Regina’s immune system to deal with. Medicine was Regina’s food and often interrupted her true feeding time.
Besides, the two main care-givers were struggling to deal with hospital flu and hostile weather conditions that has been consistent much of this year. The deadly flu infection interfered greatly with the course of care and signs were visible at this time that the main patient,Regina, would soon quit the race to life.
Indeed not even the oxygen machine that was brought to support breathing resuscitate her to live again. Life simple came to an end and news of her passing on was too bitter to take. The five months in hospital that were spent to restore Regina’s life were fruitless. Death was the only answer we would get. It happened and could not be brushed off. Denial, anger and regrets could not change the natural event that she had rested from the endless misery of endless combinations of afflictions.
The trust given to doctors could not help and blaming the health care system was futile. The best we could do was to give Regina a decent send off with all the love. In spite of her loss, life had to continue. All that the family could best do was to unite strongly against life challenges, thrive and share happiness with others.
I am still recovering from her loss barely two months down the road. Death was like a joke to me until we lost Regina, a great part of my life and a powerful reason why I worked so hard to accommodate her in a more thriving and homely environment. Her death threw me miles far behind my earlier stage of life. It showed me how life meant nothing after loss of a loved one, when there is nothing to glorify, to feel proud about or struggle very much for. It was one moment mental disability would permanently ensue if grieving time was not well handled.
I have lost relatives before, heard and ‘understood’ the essence of death since childhood. I have also read about events leading to deaths and had visual experiences. In all, death has never been true and justifiable to me as at the death of my sister, Regina. Even the comfort of friends and reassurances were never convincing. A Rastafarian friend, Bongobingiman Gumarutahigwa Ruhinda, sent me an encouraging message, “Our birth is not the beginning nor is death the end. Life continues.”
Regina’s death was biggest challenge of my life and one to deal with. Despite ever discussing life after death, the death of my sister justified strongly why I needed to understand death best and the life after, to see the situation of my sister, whose life I struggled very hard to save (5 months) and failed. It was such a long time of pain for her, felt by care-givers too.
From the city to the country side where the family lived, I always knew who to find first and build peace and happiness with. That was no longer possible. I chose to turn her bed into mine to experience her spiritual presence. At some point I felt weather very hostel and thought whether it was responsible for the chronic respiratory condition she suffered to died from. I kept on asking myself similar questions and blaming myself for not being home early enough to protect her.
Really the prolonged pain to her death was very hurting and demeaning to life of the living. She innocently lived in emotional, psychological, physical, and sociocultural pain since childhood. Her biggest disappointment was, never living a normal and fulfilling life; move out, go to play, make friends, work, and support others. She was handicapped for reasons that were not her own and innocently experienced lifelong pain and death. A Buddhist Priest and friend of mine took a moment to reflect on life and said, “yes, I sometimes shudder at the thought of such suffering. Monks is India are so vulnerable. We have no help at hand. We are left at our own mercy.”
Life seemed such meaningless, then; like there was nothing to struggle for, nothing to be pleasurable about, and nothing to live for other than pain and death! Both that, either live life happily or miserably met sickness and death. Indeed the truth about the world I lived in was hard to take, even when it appeared clearest to me. But Kitasaala Sarah, a parent I met as a teenager in Jinja District in Uganda, re-echoed it to me. She said, “we are mortals. So vulnerable to death but what matters much is the kind of life you’ve lived. We all need to enjoy our stay on earth.”
Every time my thoughts rushed back to misery in Regina’s last days of life, I experience the pain. I sometimes felt I should have done more to reduce her suffering so that she could live longer. I was living miles apart, held up in routines to survive in the city. And when I showed up, it was too late for me to stop the misery and painful death. It was beyond my control.
The doctors in the environment full of health care inadequacies, too failed. The care and attention in public facilities were very limited. Collaboration between referral hospitals on treatment modes was non-existent and the location of medical facilities, very questionable. One facility, Kiruddu, was near Lake Victoria with numerous swamps around it filled with mosquitoes, and it faced frequent water shortages. The neighbourhood had a negative view of the facility as a death trap. But for me, death became such an enormous issue to resolve.
Death was such daring to the very determined and strong to stop. It just walked in and took life of the loved one we loved so much and strived to protect day and night. I and the rest of the family were left powerless, only to surrender without choice.
It is at this time that I pondered longest on life and death. At the same time I conceded to the fact that we live now only to die another day; life was such brittle and fragile state that vanished easily despite fierce efforts to protect it; life was a transit phase of our existences from birth; it was natural design to die and by nature we will all die.
Death was ultimate end of life that awaits everyone. We can do nothing about it. Nothing better or less we can do to overcome death. It is a pending event for all to encounter, regardless of the sorrow we keep ourselves in upon loss of a loved one. Death is a universal phenomenon as Ratana Nanda Bhante, a Burmese Buddhist Scholar in Sri Lanka remarked:
“… and indeed its make me also more thoughtful about the life [you] are having now. But its universal phenomena, all are suppose to decay, suppose to end up with the death. This is call[ed] Dhamma niyama- means rules of the nature. I believe, which you also could feel. So I have no words to give you, to feel comfort[able].”
‘Dhamma niyama’ is worthy keeping it in mind as I breakdown the painful loss of my sister and rebuild life again.
For whatever we do, we do for life, since it ends soon. And it is better to be good because goodness nurtures life more than the bad deeds which frustrates it. In a way, death of a loved one is learning opportunity: through death we realise powerful divine truth of life and develop in it. The Buddhist text brings that to light in Dhammapada 129-130, which stipulates that, “all beings fear death, all love life, then who can you hurt, what wrong can you do?”
For Christians as much as positive psychologists, whatever bad events that happen, there are special revelations and good reasons for their occurrence. Indeed, the times were becoming so hard and hostile for the survival of the rest of the family that Regina wholly relied on. Our mother, the lead caretaker, fell ill around the same time Regina’s conditions worsened, and we had severely run out of funds. More over distant relatives could not help. A Christian friend, Golyan Emma, relayed spiritual energy back into me when he said, “well you have to be strong cause at times we are put to tests and God has got reason as to why certain things happen”.
I now understand what it means to loose a loved one. As I wait for my own last moment and end of life, I say to you, my sister, Regina, “you lived innocently in pain and died for reasons that were not your making. Your vulnerability deserved better and sustainable support from family and community. Unfortunately, the World had become sophisticated place for us all, so much that you could not cope as much as your family. You will always have the deepest love from us and great presence in our lives. This will guide us to strive for better lives, in such a World full of adversaries. Rest in peace.”
The humble family of the late Regina Kizza looks forward towards organising Regina Kizza memorial lecture and community events to draw lessons from her life, strengthen family capacity to live-on and overcome socioeconomic challenges that failed the sustained support for Regina, and start a foundation to help poor families care effectively for disabled members – a life Regina lived for 31 years. We hope friends and well-wishers will join us in this uphill task and show compassion, kindness and goodwill to the family, and other vulnerable people fighting for their lives -the best legacy we only have behind us when life ends.
