Waking up disabled from a two-year coma

“It was my first time in two years to open my eyes and see what was around me.”

By Gladys Kalibbala

Forty-year-old Dr. Naboth Coole, a lecturer at Makerere University, would not be alive today had he put into practice the idea to end his life 32 years ago.

He had just started school after lying unconscious for two years following an illness. Not only did he have to come to terms with his disability that resulted from the illness, he had to also endure a lot of stigma at school and at home – an experience that eventually became too much for him that once, he contemplated killing himself.

Recently, he was invited as an inspirational speaker at a meet by members of the Entebbe Handling Services (ENHAS) savings scheme, and he shared his experience with the group.

Naboth was born like any other normal child at Nyakibale Catholic Missionary Hospital during the Idi Amin regime. Growing up, he enjoyed playing around the cattle on his family’s farm in a remote village in Ntungamo district. He usually stayed on the farm together with his hard working father.

One such day of 1979, four-year-old Naboth and his father were returning home from the farm when it started to rain. By the time they got home, they were drenched, and little Naboth got a fever. His father carried him to the bed and tucked him under a thick blanket. The boy slept on one side without turning and by the following morning, he had slipped into a coma.

His parents Abel and Merab Rwakazairwe of Mabale village, Kajana County immediately rushed him to Nyakibale Catholic Missionary Hospital where he was admitted, and it was in this health facility that little Naboth would lie for two years in his state of unconsciousness.

“I only woke up one night in December 1981 and was shocked to see lights and nuns wearing veils. It was my first time in two years to open my eyes and see what was around me.”

During his stay in hospital, Naboth’s mother was a constant presence on his bedside. And the day his eyes finally flung open, she looked right into them and broke down into tears – tears of, most definitely, relief and joy. She hadn’t seen those eyes open in two years.

Moments later, Naboth tried to reach out to his emotional mother but quickly realized he could move neither his hand nor his foot.

“The whole side was stiff and I learnt it was the side on which I slept the day I was brought home with a fever,” he tells the group.

The shock that he could no longer walk or kick the ball around their compound immediately took its toll on him. He broke down into uncontrolled sobs.  His mother cried too. It became a moment like no other – understandably overwhelming for both son and mother.

Soon some nuns walked in and helped the mother away as one stayed by Naboth’s side. For two years the little boy had respired without uttering a word. He was plunged into a deep slumber he too was perhaps unaware of. The first three days, his eyes were completely shut, then they remained partly open and his body stiff throughout.

Naboth had not been vaccinated against Polio as a baby largely due to the ongoing insurgency at the time in their area where medical services could not be easily accessed. His father was a Uganda People’s Congress (UPC) party diehard and was forced into hiding after President Milton Obote’s (who ousted Amin in a coup) government was toppled. Those were tense times.

Naboth’s sister Karen Nimusiima had dropped out of school in order to take care of her siblings while their mother was in hospital looking after their brother. Naboth was the last-born in the family of five children.
 

Tough times

After being discharged from hospital, little Naboth had to resettle into his community as well as into his new life of disability. Unable to walk, a bumpy road-of-life lay in wait. It would be a life punctuated by trials and tribulations for a boy as young as he was. And he did struggle to come to terms with the kind of brutality life was throwing his way.

Only a few people in their village ever visited their home or even allowed their children to go near him. He was reduced to crawling around the compound on his chest and to worsen matters, Naboth was seen as a curse. As it was a period of political turmoil, his family had to go into hiding often. Whenever they had to, his mother would carry him on her back and, together with the other members of the family, would run to the safety of the bushes.

“According to the doctors, I had suffered from Polio but none of our people had ever seen such a case in the area, so they believed it was witchcraft,” Naboth explains.

After a rehabilitation programme (physiotherapy), he managed to get into the sitting position. In 1983 he joined Nyakayenje Primary School, which was about two kilometers away from home. For long, his mother carried him on her back to and from school daily.

But then, disturbing events ensued.

At school, Naboth became a laughing stock of not only his fellow pupils, but also, sadly, of the teachers.

“At break-time they would gather around me, during which some children would throw stones at me to see what I felt.”  He turned into a constant source of ridicule both at school and at home and the effects of this treatment soon bubbled over.

Three months later, he refused to go back to school and preferred to stay on the farm.

“Unfortunately, not even my family could see that I was being mistreated and they only concluded I had refused to study. At one time I thought of ending my life to stop this suffering,” he remembers in a bitter tone.

For five years, during daytime, he stayed on the farm which was about one kilometer from home.

At such a tender age, he went on to erect himself a mud hut to live in. There, his mother would carry for him lunch every day. One evening, under a heavy rainstorm, his little hut collapsed, piling more misery on Naboth. He was forced to crawl back to his parents’ home under the downpour.

“Immediately I appeared in the doorway at home, everyone, including the visitors, burst into uncontrolled laughter. I was full of mud and very wet.” It was a very harsh reception from the people he called family.

Turning point
 

He made his way straight to his bedroom and broke down. His Godfather Salongo Barigye followed him. He comforted him and counseled him on his future, eventually convincing the lad to go back to school.

 “I gave conditions that it [the new school] must have some other children with special needs [disabilities],” he insisted.

He was later enrolled at Tukole Invalid Salvation School, Mbarara – a school for children with disabilities. Soon, he learnt how to ride a bicycle while in Primary Seven (P.7) and scored an impressive Aggregate six in division one.

That performance saw him join Muntoyera High School. For his A’Level (Form Five and Six), Naboth studied at Bentah College and during his Form Six vacation, he went to Mbarara Taxi Park where he worked with Fenehans Barigye. He operated as a cashier and as a taxi driver plying the Mbarara-Kampala route for a couple of years.

“Before joining the transport business, I had traded in coffee and milk and always had money at school.

Despite his practical abilities along the way though, Naboth’s disability did attract a sense of skepticism from some people, especially being a taxi driver. On many occasions, passengers would run out of his taxi upon realizing he was disabled and the driver.

But that was an obstacle among several others that Naboth would go on to get used to. His will and determination to live on was strengthened by his divine connections. Wherever he went, he routinely attended church service in that area – notably, at Mbarara Pentecostal Church and Kansanga Miracle Centre in Kampala.

He acquired a bachelor’s degree at Makerere University in 2003 and his Masters in 2007 and later studied in Finland from 2010 to 2013. By 2009 he had joined diplomatic circles and worked in Kenya’s capital Nairobi before coming back to lecture at Makerere University. In fact, he quit his United Nations (UN) job in order to start something for himself and he now heads about five offices.

As he wraps up his delivery, Naboth observes that many women have been abandoned by their husbands whenever they produce children with disabilities.

Because some disabilities may require a lot of attention and money, some men walk out on their wives, claiming that they don’t produce such children in their families, he explains.

In other families, when such children are born, the couple hides the child with multiple disabilities, fearing people will laugh at them. And the result is that such a child ends up not going school and also misses out on the all-important component that is interaction with the public.

Naboth says: “Hiding children with disabilities should be stopped immediately as it deprives them of their rights. The public should also stop calling us disabled or a curse because we can perform better once given the same opportunities like other people.”

He believes such children equally need proper education and the basic needs.

“Provide them with food, shelter, health care and give them skills that can make them self-reliant,” he finalizes, making known his displeasure over lack of parking space for people with disabilities as well as special toilet facilities around the country.

Naboth pictured here back in the day with his colleagues at school

Naboth has always been keen on things going on around him. Here, he listens to BBC Radio while at school

Naboth at his graduation with his father on left and brother on the right

Here, he sits calmly beside his mother on one of his most important days in life

Gloria Kamayanji (currently a Clerk at Parliament) taking Naboth to school at Kagamba School back in the day

Naboth with his Radio which used to fecth him money during weddings and parties in the village

Naboth operating a Boda-boda (motorcycle) in the village

Naboth is pictured here working as a cashier at Mbarara Taxi Park