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Friday,December 04,2020 14:38 PM

I refused to go home and die - Nalubowa

By Gladys Kalibbala

Added 3rd May 2019 10:05 AM

Although I could not stand on my own, I chased all my family members including my children to go away while I vowed not to go home.

I refused to go home and die - Nalubowa

Prossy Nalubowa has lived with the HIV virus for 28yrs. (Photo by Gladys Kalibbala)

Although I could not stand on my own, I chased all my family members including my children to go away while I vowed not to go home.

STIGMA   HIV/AIDS
 
Prossy Kevina Nalubowa had been bedridden at Bukomero Health Centre for one month in 1998 and from the over 75kgs she once had she reduced to 40kgs only and looked horrible.
 
Despite all this plus comments from her community, she never gave up as she explains:
 
I was a Primary School teacher at Mwezi village in Bukomero sub-county in Kiboga district in 1991 when World Vision visited our area for HIV screening. I had no problem mobilizing the community while encouraging them to participate in the screening exercise.
 
Because I felt healthy and had no pain, it was a great shock to receive results indicating that I had HIV.
 
 alubowa with a friend among those who bought her drugs in those early years of her illness Nalubowa with a friend among those who bought her drugs in those early years of her illness

 

 
Within no minutes I was screaming and crying while telling the counselor that she was mistaken. It was until she asked me to compose myself in order not to alert everyone outside that I was positive.
 
With a plastered smile I came out and went straight home where I woke up the following day with fever, diahorrea and vomiting. My state changed so first that I was left helpless.
 
The following week I developed skin rash and got ‘Kisipi'. It turned out to be a strange disease in our community and when I was admitted many would come to look at this strange ailment.
 
Around this time I was campaigning for  the ‘Woman seat' at the sub-county  and all hell broke loose when youths from my competitor told me openly they could not waste their votes on me when I had a few more months to live due to HIV. 
 
Parents at the school showed concern that they were not comfortable with my continuing with teaching their children.
 
Fellow Christians at our Catholic Church in the area demanded for my services in the Church to stop as I was likely to infect them. After noting there was stigma in the community as well as family members I made a decision to battle it out alone.
 
 One morning my two brothers visited the hospital to talk with doctors about my state and asked to take me home and wait for my death as they no longer had money to keep me in hospital.
 
Unknown to them when they saw my eyes closed they thought I was asleep and only stepped a few footsteps from the room and started their discussion with the nurse on duty about taking me home.
 
They explained it was very clear I had HIV/AIDS which had no cure. Although I could not stand on my own, I chased all my family members including my children to go away while I vowed not to go home. That was in 1998 and It's now 28yrs when am living positively but unfortunately both my two brothers died of AIDS.
 

 Nalubowa with some of the abandoned children she looks after

 
Running off to Mulago Hospital
 
I had learnt from the nurse that Mulago hospital had started providing some care to HIV patients so I decided to go there though by then I could not even sit or stand up un-aided.
 
I only required sh30,000 for an Ambulance to take me to Mulago.  At home I had saved sh40,000 which I kept under the pillow and the following day I sent my son to bring it. In the company of a nurse, I was put in the Ambulance and rushed to Mulago Hospital where I was admitted in 4A.
 
I was later transferred to 4B and was put on oxygen while supported by good Samaritans as none of my family had an idea where I was.  After two months at Mulago the nurse checked on me and told me my family and the community believed I was long dead and they went ahead to install an heir for me!
 
Because of the born-again who used to visit different wards as well as fellow patients who were stronger than me, I was able to cope. That was around September 1998 and by February 1999 through a counselor, Elly Sendi I joined TASO - Mulago.
 
All this time Mulago had discharged me as I was a lot better but since I had nowhere to go I refused to leave the hospital.
 
At TASO:
 
‘Senga Nalubowa' became a house hold name to majority of clients of TASO - Mulago through the Drama Group. My commitment to help others resulted in my being appointed as a volunteer at TASO in 2000 and I started giving services at Mulago's TASO day care centre.
 
It was Peter Sebbanja a Physiotherapist who took me on with a friend, the late Resty Nakitende. When I finally got a place to stay, it did not take long as one time I was locked outside when I went for a bath with only a lesu on my body.
 
I knocked at the door and called out to everyone inside the house but nobody opened. I slept in a box which was used to keep tomatoes by our neighbor.
 
 rom left alubowa celebrating her birthday after she had improved from the sickness From left, Nalubowa celebrating her birthday after she had improved from the sickness

 

 
Breakthrough
 
When I was later picked to join the group which was to train at Garuga for stress management and peer counselling I almost refused for lack of appropriate clothes. For the six months I had stayed in Mulago I only had an old Gomesi and a lesu.
 
I could not imagine appearing in that Gomesi for three months! I decided to visit a relative around Kampala for assistance but all my efforts at explaining how crucial this training was for me never moved my brother who only said he had no money to buy clothes.
 
 When I turned to the brother's wife she said all her clothes were large and could not fit even after I had explained I would take the dress to the tailor for fitting. I saw this one old dress they had turned into a rug to clean the house and I almost snatched it away in desperation.
 
Fortunately, the brother gave me sh2, 000 for transport while the wife also gave me the same amount. I set on foot and saved money in order to get clothes at Owino market. I bought two dresses at sh 1,500 each and walked back to Mulago (Nalwewuba zone) a happy person.
 
 On top of the knowledge I got from the training at Garuga, I cannot forget the excitement of receiving more than sh 200,000 as allowances for the first month we stayed there for training.
 
What I received at the end of the third month enabled me to rent my own room, bought a mattress and many other essentials. My first night at Garuga was my first time to stay in a self - contained room and I knelt and thanked God for this.
 
Up to the time I reported to Garuga  my hand and leg remained paralysed from the severe sickness I had suffered but all this became history after the physiotherapy I received from Sebbanja at the training.
 
Work at TASO - Mulago
 
What I had gone through enabled me to help TASO clients at Mulago with trainings in stress management. At one time after I had given my testimony before a group of friends of TASO, one of them I only remember as Bono from UK (we fondly referred to him as voice of drum) approached me with a suggestion of building for me a house so that I re-unite with my children. 
 
I was speechless as this would have been my dream but I refused the offer. We were 25 members in the drama group and by then it was still tough to get ARV's so I requested that he pays for the drugs for all those who were eligible to start it in our group. We were all suffering and building a house for me would only benefit me leaving my friends in pain.
 
He was able to pay for our treatment for three months which left all of us very happy and healthy. 
 
My only regret was that by then my best friend Resty Nakitende was found to be in a bad state and could not start this drug as her body was already very weak. In 2002 I became a trainer of fellow TASO clients in Aromatherapy, reflexology and body message until 2014 when this organization told me they no longer had funds to support that work.
 
Currently, I am the Chairperson of the Clients Council - TASO Mulago, TASO's community health worker, a VHT (Village Health Team) member for Katooke village in Nansana Municipality, and a promoter of Living Goods - Bwaise.
 
Visit home after five years
 
In 2003 after five years without going back home I visited with friends of the Mulago TASO Drama group and World Vision for an HIV awareness seminar. With amusement I saw my childhood friends in the group watching the drama group singing and later performing plays.
 
Unfortunately, none of them including her relative could recognize me until the leader of the group introduced me to the community.
 
As I came out to address them and identify myself and the names of my late parents, friends and relatives who all thought I was long dead came to hug me while in tears.
 
I did not reach home but later learnt my children got to know that I was alive and with Mulago TASO.
 
Within two days my daughter was in Mulago to see me though am sorry her finding out that I was still alive and nobody told them about it threw her into trauma. Unfortunately, my parents Kalooli Senono and Meresiyana Nalwadda of Mwezi village in Bukomero had both died during the NRA liberation war.
rom right ebbanja one of  the  founders with other friendsFrom right, Sebbanja, one of the TASO founders with other friends

 

 
Future plans:
 
During my journey of caring and training TASO clients, I've witnessed some clients abandoning their children at the TASO Day centre over the years forcing me to take them into my care.
 
At the moment I care for over 15 of them. During that time when I was bedridden and had just reported to Mulago Hospital, I pledged to GOD to help others if he helped me overcome my sickness.
 
I plan to go back home in Bukomero and settle there for my retirement but unfortunately, there is no house in the village. I however thank all the people who helped me during that time I was down as well as management of TASO Mulago who have done a lot for me.
 
 
What others say about Nalubowa:
 
Godfrey Mafabi (Centre Program Manager - TASO - Mulago):
 
We are just proud of her commitment towards the clients where she has trained many of them as well as helped many in fighting off stigma. Her testimony which she has repeated so many times in our different meetings truly enabled many to overcome their fears and live a normal life.
 
Claire Namatidini (Human Resource Assistant - TASO - Mulago):
 
Nalubowa has been a pillar in the fight of the HIV virus by training many clients in counselling and other skills while she is among the first members of the Drama group. Through music and plays, various communities have benefitted in getting adequate information about this disease.
 
The messages in most of the songs are real - life experiences shared amongst the clients during their meetings at the day care centre. During such community visits, many clients were able to fight off stigma.
 
Dorcas Nansikombi (TASO - Mulago Drama group member):
 
Nalubowa is an amazing hardworking woman who fought hard for her life and that of many other abandoned sick people. I always remember some of her actions with wonder like the time she went back home and met Sam Ntale who had been deserted by his family in a small hut at the grave yard.
 
His family had feared to get the disease from him so he was dumped there to wait for his death. Nalubowa brought him to Mulago and cared for him until he was discharged.  By the time her friend Nakitende died, Nalubowa was still weak but she looked after the friend till the end.

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