Regina Kiiza Memorial and Development Fund: A Life Innocently Lived and Beautifully Left

Regina Kiiza Lived A Very Challenging But Innocent and Compassionate Life

"Born innocent, Lived innocent and Died Innocent"

- Jacob Waiswa

Regina Kiiza was born in 1985 and died in 2017, leaving behind great compassion and beautiful life that those around her struggled to keep until limits of human nature led to their untimely end at the physical. In spirit, the beauty and compassion live on. And hopefully, we can help renurture such a life for the disadvantaged others to thrive in such a world that challenges the most vulnerable to cope and find peace.

Regina contracted meningitis, hydrocephalus, and epilepsy conditions at birth. She has since overcome these conditions to reach the age of 32. As a child life was very promising despite suffering from multiple physical and mental challenges, as support systems were readily available. A daughter of a single mother and retired civil servant, Regina was graced with a spacious home as part of the benefits of civil servants that her single parent benefited from. The location and decent house attracted extended family members –who resided there as students, newly employed youths in town and as job seekers. The public house also had tenant houses that brought in friendly people to live with. As such  Regina had a vast social support system between 1985 and 2000. After retirement, her single mother lost only job and got hit hardest as bread winner. She was forced to find lowly jobs in emerging organizations to support Regina and herself as well as rent makeshift house in the town, closes to the main hospital. The strategic location ensured that Regina has access to emergency treatment. The new life was very challenging, as the social support system had soon collapsed and none of the extended family members were in sight,  anymore; no even friends. Loneliness loomed the life of Regina in a very restricted and unhealthy living environment. Even her 3 siblings had long started new families and left her extremely lonely. Her single mother and caretaker spent most hours of the day toiling for a living. At age of 66, she was still running around to farm and work as support employee with local development organizations. The only chance Regina met her was after 9pm. Loneliness, immobility and lack of direct contact of sunrays, left her so vulnerable to infections and it was not so long when she contracted a life-threatening Tuberculosis (TB), which at first was mistaken for regular flu and cough. Malaria fever too joined the list of infections and conditions afflicting Regina. Regina was suddenly thrown back to early-childhood trials and tribulations of life, even worst after she contracted with a very terrifying and resistant TB virus that took her into comma and feeding as well as passing out only from tubes. But thanks to her very resilient single mother and her own experiences of living in unconscious states and facing pain and misery from greatest part of her life. Great Samaritans too came in to offer unlikely support and hope to the single mother threatened by poverty, disease and uncertainty. But Regina’s own resilience brought her back and gave her chance to life again amidst scares of TB deaths in the same hospital wards each day. Upon this victory, the future now has key lessons for Regina, her mother  and the world

Regina was lucky to live again

Her care and support cannot be guaranteed.

Care and support can only come from outside family circles, from new adoptable families and friends as well as wellwishers, who may be happy to share love, hope and a better future with Regina.

Regina was transferred to Kiruddu from Jinja hospital 3 days ago (July 22). From comma, she was responding well to treatment. The 2 months and 2 drug combinations did well, until 4 days ago when she was set to adopt a 4 drug combinations. Unfortunately for Jinja medical people, the drugs they had were very strong for the liver type. When IMI inquired from main mulago, it was revealed that such cases call simply for 2 weeks break off drugs. Other colleagues suggested same, one other said only 1 of the 4 was problematic and could be withdrawn for sometime, then get reintroduced. Well, I am yet to understand what Kiruddu people have decided. We neglected this disabled girl for some years immobile and deteriorated to levels TB took a chance. It was very regretful since it was such a prevented case. Seeing the pain she is going through alongside other vulnerabilities, we too now have emotional pain to deal with.

Kiruddu is crazy place. At least 20 people die every week. Sunday 23 July was witnessed by me. On 6 floor alone, some 5 people died and left behind fears and anxieties for patients and caregivers. Reason fronted is late transfers/referrals for management after other hospitals have failed. And patients are brought in closest to death. I was among those moved by the deaths, in absence of standby medical person to resuscitate life. ~ Besides, Kiruddu location is disastrous. It is a beach environ, near Lake Victoria. The night long weather is fatal for the struggling patient, far destabilising for the care-giver.

Unfortunately Regina passed-on on July 27, around noon. It was a brave fight by her caregivers, who fell sick around her last 5 days of life from burnout and respiratory infections. It was a painful death that onlooker would experience too. The death itself was worst event as there was greater hopes of recovery before she was transferred to Kiruddu. Whatever the regrets (medical negligence, caregiver burnout, new infections and hazardous hospital environment), Regina (32) is gone, leaving behind a lot of emotional pain and love.

We hope from her loss, the struggle for better health care system, patient justice, vulnerability redress, sharing the love Regina amassed, giving hope to the bereaved families and supporting them through difficult times, and achieve a life she much longed for, will benefit the living so that they can live at peace with the dead through events as funeral and memorial services as well as family livelihood and health improvement activities in their memory.

We appreciate the timely local support from family and friends:

Jinja Medical Center/Dorothy

Jinja Referral Hospital (despite deploying student nurses, helped take Regina out of comma)

Waako Emmanuel (through sickness and death)

Jacob Waiswa (through sickness and death)

Babirye Racheal (through sickness and death)

Namulemo Daisy (Mother, from birth through death)

Matumbwe family

Mama Hellen

Stephen Kisira

Isooba Dan

David Mukunya

Isaac Waako

Waako Richard

Waako George

Kigenyi Mariatah

Uncle Bairu Fred 

And the great Elizephany family

Key areas of interventions are;

-Building decent shelter for affected family.

-Providing land for gardening from which to produce food and meet their nutritional values and employ her single mother as grocery dealer and help support medical bills. 

-Support to family’s immediate nutrition needs.

-Volunteering to train affected family (ies) in life skills, 

-Relief grant (USD1500 per year) to help affected family (ies) run business, supported by 2-4 workers for at least three years.

Rebuilding affected family (ies) and communities with similar socioeconomic and disability challenges shall be run by the Integrated Mental health Initiative -IMI (www.integratedmhi.blogspot.ug and www.facebook.com/integratedmentalhealthinitiative ) was the focus between April and July by IMI, an organization that designs environments and human environments to reduce vulnerability, accelerate healing and achieve sustainable wellbeing. The IMI has been at the forefront of researching and giving support information to Regina mother, mobilizing local support resources from friends and using its own resources to buy recommended medicine and food for Regina, in order to sustain healing. Since longterm wellbeing of Regina was in question, the IMI now establishes a fully-fledged programme under it to extend support to bereaved families and communities faced with challenges as that suffered by Regina and her family – to overcome vulnerabilities towards otherwise fatal preventable diseases as TB, Malaria, liver and Kidney conditions.

Any material, financial, volunteer and advisory supports are highly recommended, sought and very welcome. Any such assistance will support;

Conduct funeral service for Regina Kizza

Rehabilitate her grave as part of the celebrations of her life amidst lifelong trap within nest - of physical and emotional afflictions.

Champion the life she desired: better shelter, better nutrition, freedom to move from one place to another, right to community participation and socialization, and family health and harmony – through the living as greatest connection with her.

Create awareness about the state of the health-care system and work to improve it through construction of model client-centered health facility, where life comes before money, promotion of pro-patient professionalism, promotion of alternative sources of health care, advocate for basic health care trainings and empowerment of poor communities – who cannot afford quality health care, and promotion of health care task-shifting in the health care system.

Relief aid to vulnerable families: beddings, food, medical supplies, and psychosocial support.

Business development and livelihood support grants for the socioeconomically challenged families.

How else to contribute:

• Volunteering as psychotherapist, physiotherapist, social worker, community mobilise, fundraiser, social change advocates and project administrators – for 3 – 12 months..
• Donate books.
• Support financially for as low as $50.
• Sponsor shelter building project for poor families for as low as $1500.
• Messages of support to affected families.
• Making contact:
• Express interest to volunteer by email to: dishma.imhs@gmail.com
• Donate books by DHL - Plot 15, Narambhai Road, Jinja, Uganda
• Make financial contribution by Western Union - Jacob Waiswa, Jinja or through Barclays Bank, Jinja Branch, Uganda, AC No. 6004667822

Regina Kizza Memorial and Development Fund: Meaning of Death,

Regina Kizza, 31: Being fed during her last days in life (Photo taken, July 2017).

I have lost relatives before and I have heard and 'understood' death since childhood. I have also read about events leading to deaths. In all, death has never been true to me as at the death of my sister.

I felt it was biggest challenge of my life and a challenge to deal with. Despite ever discussing life after death, the death of my sister justified strongly why I need to understand death and the situation after death 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, reciprocating similar pain in caregivers. Prolonged pain and painful death was very hurting and demeaning to life of the living.

"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." -Bhante Bodhipala.

Life can seem such nothing, then; 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 meet death. 

"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." Kitasaala Sarah

Every time my thoughts rush back to her misery, I experience the pain too.  It was too late for me to stop the misery and painful death. And it was not under my full control to stop her death. Suddenly, death became such an enormous issue to resolve, let alone understanding the status of my sister after. 

Death was such daring to the very determined and strong to stop. It just walked in and took life of the loved one we strived to protect day and night. I and the rest.of the family were left powerless and only to surrender without choice. 

It is at this time that I was reminded of all my lessons about death. It is at this time that I conceded that we live now only to die another day, life is such brittle and fragile that vanishes despite fierce efforts to protect it, life is a transit phase of our existence, we are no where before birth - then we are born and start our existence - mature and age - die and cease to exist - no more life. 

It is natural design to die, it is by nature that we will all die. It is ultimate end of life. It 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. 

"...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]." -Ratana Nanda Bhante.

Thankfully to this reminder - Dhamma niyama. I will keep that in mind as I breakdown the painful loss of my sister.

For whatever we do, we do for life, since it ends soon. And is better to be good because it nurtures life than the bad which breaks life.

"All beings fear death, all love life, then who can you hurt, what wrong can you do?"

- Dhammapada 129-130

For Christians as much as positive psychologists, whatever bad events happens,  there is a special revelation and a good reason for its occurrence. Indeed, the times were becoming so hard and hostile for the survival of the rest of the family that Regina wholly relied on.

 "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". - Golyan Emma

Rest in Peace Regina Kizza‎

- Jacob Waiswa Buganga (Author, Brother to Regina and Lead Organiser of the Regina Kizza Memorial Events)

NB: The humble family of the late Regina Kizza appeals to family, friends and wellwishers to contribute generous towards Regina's funeral and public lecture/community event 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 relatives - a life Regina lived for 32 years.

How to contribute:

• Volunteering as therapist.
• Donate books.
• Support financially for as low as $50.
• Sponsor shelter building event for poor families for as low as $1500.
• Messages of support to affected families.
• Making contact to make contributions:
• Express interest to volunteer by email to: dishma.imhs@gmail.com
• Donate books by DHL - Plot 15, Narambhai Road, Jinja, Uganda
• Make financial contribution by Western Union - Jacob Waiswa, Jinja or through Barclays Bank, Jinja Branch, Uganda, AC No. 6004667822