A huge scar sists on Eddy Owera Bongo’s head, a mark symbolic of his triumph over a sickness that almost cost him his life.
Bongo, 48, rarely fell sick until 2005 when he started feeling frequent dizziness and suffered constant headaches.
“I would feel like someone was hitting hard on my head with a hammer,” Bongo says. Although he is audible, his speech is slow.
Over time, the situation took a turn for the worst when he started getting fits (uncontrolled vigorous body movements). These mostly happened in the night and would last three to five minutes.
“I hardly felt anything when these episodes occurred. It was only after they had ended, that I would realise that, Doreen, my wife, was crying and asking me a countless number of times if I was alright. Most times, I would not know what to answer,” Bongo says.
These series of events forced him to seek medical attention. After a few tests, he was diagnosed with typhoid, an illness often associated with a number of symptoms including high fever and headaches. Although he was given medication, the symptoms Bongo had been manifesting earlier, persisted.
“We went back to hospital for a second opinion and we were still told it was typhoid and therefore, Eddy had to continue with the treatment,” Doreen recounts.
The couple decided to seek a third opinion after Bongo developed a swelling on his right leg. “It was diagnosed as gout (a type of arthritis which causes sudden attacks of severe pain and swelling) and they treated it for one month and the swelling subsided only for it to return three weeks later,” Doreen, 39, says.
The shocking news
The couple visited another specialist who diagnosed Bongo with epilepsy after an electroencephalogram (EEG), a test used to find problems related to electrical activity of the brain. He was put on medication for one year but there was no improvement since the fits worsened.
In 2009, the couple visited a neurosurgeon, at Mulago hospital. He performed a computed tomography (CT) scan, an x-ray examination of the brain and that was when the shocking discovery was made.
“He broke the news to us that Eddy had a tumour growing in his brain,” Doreen says.
The couple reacted differently to the news. “Although the doctor gave us detailed information on brain tumours, I remained confused and asked him many questions. What puzzled me the most was the idea of something growing in someone’s brain? It was something I had never heard of,” Doreen says, adding, “It was the worst day of my life.”
Unlike her, Bongo remained composed. “I was not as scared as Doreen because the doctor assured us he would do everything within his power to help us deal with the condition,” she says.
The doctor suspected that the tumour could have either been caused by a brain injury such as an accident that involved Bongo hitting his head on hard surface or inherited.
“But I told him that I had never been involved in any accident and that there was no one in my family who had suffered from this condition before. He then hinted on other possible causes including stress, among other factors,” Bongo says.
The father of three was not working at this time after getting laid off from Uganda Railways Corporation as the assistant advanced cargo information system officer in 2006. He had been applying for different jobs when he was diagnosed with the tumour.
Throughout 2010, the family was mobilising funds for Bongo’s surgery which had been recommended by the doctor at Mulago.
“It was not easy as the load was on me. Eddy was not working, so, I was always on the move looking for money for the needed operation,” she says.
Doreen is a fashion designer involved mostly in making African fabrics. Besides having to source for money, she was dealing with the negativity thrown at her from individuals who were against the surgery.
“There were some people against the operation. They kept telling me that Eddy would die in the theatre,” she says, adding, “Then there were those who advised me to instead seek services of a witch doctor. It was tormenting having to hear all these things.”
She stood her ground and Bongo was able to have two surgeries in 2011 at Mulago hospital.
“The first surgery was not successful. Eddy bled profusely and suffered a cardiac arrest, so the operation had to be halted,” Doreen says.
He later had a second one two months later where the tumor was removed. When further tests were conducted after the tumour, the doctors discovered that it was noncancerous.
Besides the surgery, the couple also had to spend a lot on medication. “We have probably spent more than Shs20 million, money that had been amassed from our savings, profits from my business and contributions from well-wishers,” Doreen says. Despite the trials, the couple still holds on and is grateful to God for life.
Today, Bongo says their lives have completely changed as roles have changed. “I’m the bread winner of the home. Eddy is not able to work at the moment because he is still recovering. Besides, both his right limbs are a bit deformed. He limps while the hand is a stiff,” she says.
Despite everything, Doreen says she can never leave her husband for another man. “It is for better, for worse. I married my husband because of love and it is what keeps me in this marriage.”
Since Bongo does not work, he often keeps himself busy in the house by reading newspapers, listening to radio or even performing some house chores. Sometimes, he goes to sit at his wife’s workshop in Luzira, a suburb in the outskirts of Kampala City, which also happens to be their area of residence.
Bongo is grateful to his wife for her love and care throughout the years.
“She is heaven-sent. It is very difficult to find women like Doreen. Even during those difficult times I have wanted to give up on life, she has encouraged me to push on. She is always praying for me and our three children, counselling me as well as ensuring that I take my medication.”
Bongo who is still recovering is also grateful to God for this second chance in life. “If it were not for the almighty, I would not be here, today,” he says.
“I got to know about daddy’s illness when I was in Primary Seven. It was not as an easy time for me as I was about to sit for my Primary Leaving Examination exams. I struggled to concentrate on my studies as I was always worried about him. Despite that, I managed to score Aggregate 12. I’m very grateful to my mother for looking after him because it has not been easy for her. She has really struggled to cope. She is an incredible woman.”
Brian Billy Odur, 18, Bongo’s son
About brain tumours
Dr. Hussein Ssenyonjo, a neurosurgeon from Mulago hospital says brain tumours are unruly cells that may arise in different parts of the brain. They are what one may term as satan amidst the angels. Some maybe cancerous while others not, and, the body often has to be helped to deal with them. Some of the symptoms include headaches, convulsions, visual loss, and body weakness in a particular side of the body, among other factors. There are no clear given causes for brain tumours, however, there a number of theories including exposure to radiation, genetics, HIV infection and head injuries, among others. Some of the treatment options include radiotherapy and surgery.