Former ICT lecturer found solace in disability

Sitting in his old black Toyota Corolla 100 (kikumi) in the Lugogo Shoprite parking yard, Engineer Sulaiman Mayanja looks healthy. His fat trunk, glowing skin and radiant smile conspire to conceal his once-broken heart.

Looking keenly inside, you will realise that he ‘rides’ his car: On the left side of the steering wheel, is a metallic rod and throttle which connect to the accelerator and the brake. To accelerate, he grips the throttle, like a motorcycle and to brake, he presses the metallic rod.

Wondering why he does not use his legs? They are useless in this equation. But the same legs once drove the same car in early 2008, when he had just bought it from a friend, until mystery changed his life.

Suffering paralysis

Mayanja,42, recounts events since that fateful Sunday morning of May 25, 2008. “That Sunday, I felt feverish and weak,” he narrates.

“I didn’t take it serious that the following day I went to work. During the day, I couldn’t move and started dragging my feet. Ironically, I could not realise it because I wasn’t feeling any pain.”

On realising Mayanja’s condition, his colleagues advised him to rush to hospital. He could not make sense of the situation. The following morning, after finally feeling pain, he went to Mulago hospital but the tests were inconclusive.

“Tuesday evening, I felt sharper pain in my lower body. I went back to Mulago,” he says. “This time the doctor even tested me for rheumatism (a condition that causes severe joint and muscle pain) but all was in vain.”

By Wednesday, Mayanja could not move on his own. “I needed support,” he retells. “The pains grew sharper and I spent the night, groaning with unbearable pain in my groin and toes. I couldn’t lie down, crouch, sit or do anything.”

After several futile tests, Mayanja tried reflexology. According to Mayo Clinic, reflexology is the application of pressure to areas on the feet, hands and ears—areas which correspond to organs and systems of the body—which benefits the person’s health. Reflexologists use rubber balls, rubber bands and wooden sticks.

During one of the sessions, however, something horrible happened. Mayanja was getting treatment in one of the machines when “I felt sudden, sharp pang in my back. I instantly turned cold and motionless,” he recalls.

His nephew Hajj Ibrahim Saad Mugema, recounts the disquiet: “We all feared he had died.” His nervous system had broken down. After a long while, Mayanja ‘resurrected’ with unbelievable relief in his lower body.

“I didn’t feel any more pain and I thought I had healed, yet the worst had happened,” Mayanja recalls. Since then, the whole of his body below the waistline got permanently paralysed. Even when they struck him with red-hot irons, to awaken the nerves, he could not feel anything; he only sustained wounds. He has since been confined to a wheelchair.

More futile attempts
Mayanja returned to Mulago hospital battling infections such as pressure sores, fever, and loss of appetite. After 15 days in the costly private wing, with no improvement despite seeing many doctors, he opted out.

Amid desperation, he tried acupuncture; a key component of traditional Chinese medicine that involves the insertion of extremely thin needles through one’s skin at strategic points on one’s body to treat pain.

“I endured the painful needles hoping to regain my peace,” Mayanja recalls. Sadly, he did not.
In another futile attempt, he retried reflexology for a month in Mukono District.

Afterwards, Dr Fredrick Mutyaba, suggested surgery. But Mayanja had already spent Shs15m including his Shs3m NSSF savings. Relatives fundraised more than Shs6m for the operation. The laminectomy—a surgery that creates space by removing the back part of the vertebra that covers the spinal canal—was meant to enlarge his spinal canal to relieve pressure on the spinal cord or nerves. Sadly, this was another costly painful but futile attempt.

“All I got was this big scar and the metals inside,” Mayanja says. Life worsened as he suffered pressure sores, nausea, and appetite loss.

Shrinking horizons
Before tragedy struck, Mayanja was fast rising in the ICT world. A fresh graduate from Islamic University In Uganda-Mbale (IUIU), he entered the virgin ICT industry in 1996. He did private initiatives; lectured at Kampala International University (1998-2001), IUIU (2001-2003) when “teaching someone how to shut down a computer” was itself profitable. He says the money he made from Microsoft Office, he has never made it in any other business.

By 2008, Mayanja was the operations manager at New Horizons Computer Learning Centres, an international ICT company, with more than 240 branches worldwide.

He was part of the four-man team that conducted a Microsoft infrastructure optimisation programme at Makerere University and several government departments. He also taught in the Norwegian and Swedish embassies.

The company was sending its staff to India, Dubai, Zambia, Malawi, Rwanda for further research. Mayanja and teammates used to communicate with Microsoft. “Microsoft would send us work, we, the certified trainers reviewed it and sent assessment reports with recommendations.”

Meanwhile, he says the general manager was preparing him to either take over from him or go to head another branch abroad.
“You know Indian [Asian] bosses are hard to please but my boss believed in me… he told me that my condition antagonised his plans,” Mayanja says, ruing the misfortune that shrunk his horizons.

He lost all the vital contacts; and although he is certified to train more than 400 programmes, the negative attitude towards PWDs in Uganda and the limited accessibility in workplaces limit his ability to catch up.

Rising again
So after soul-searching, Mayanja dusted his books, refreshed his storage disks and he returned to lecturing in 2010.
His former colleges welcomed him. But sharing his ‘thin’ salary with his driver, who doubled as a helper made it a tough six months.

When the 2010-2011 elections season set in, Mayanja contested in the NRM primaries. He rose through the ranks up to the position of national general secretary in the PWDs League. He was included in the NRM national task force canvassing for Museveni’s re-election, an opening he credits for exposing him to many “important people.”

Gradually, Mayanja abandoned lecturing for the more rewarding politics. The money he got from politics in two months was more than what the university could pay him in a year.

He also served as the District Service Commissioner for Sembabule, his home district, engaged in small scale businesses, but most importantly, he upgraded his academics. By 2015, he had a Bachelor of Information Technology and Master’s in business administration (HR) from IUIU.

Tribute to family

After a year of despair, with no hope, Mayanja needed a strong support system to pick up the proverbial pieces. His wife abandoned him, leaving behind five (of their six) young children. His aging mother had also suffered a stroke because of his son’s misery. He had no insurance despite endless medical needs. How then did he cope?

“I thank God for my supportive family; otherwise I don’t how I would have made it through,” he says with a smile. “They stood bore my burden that proved too heavy for my ex-wife. And most importantly, they sacrificed their funds for my life.”
Hajj Mugema recalls,“We told him paralysis wasn’t about to heal, so he had to take God’s will and move on, when his wife left, we hired helpers.”
Mayanja adds: “I could have died of the pain and the trauma but they comforted me.”

“Liberated”
In last year NRM primaries, he vied for the parliamentary post for the central region, but defeating incumbent Alex Ndeezi, who has held the position for 25 years, was futile. Nevertheless, he is the PWDs councillor in Makindye-Ssaabagabo municipality. Only a miracle can let him walk again but Mayanja feels happy liberated and not complaining.

“My legs are paralysed but I’m liberated because I’m better than millions of Ugandans out there in one way or another. I’m highly educated; I have a political office, political connections businesses, children, a home, a car, etc.” “And a wife,” he should have added, only that we did this interview before he remarried Joweria Nabbuye, whom she met last year.

Otherwise, “How could I sit on that NRM National Executive Committee with the likes of Amama Mbabazi (former prime minister), Gilbert Bukenya (former vice president), and other bigwigs?” he wonders, because he is not youth, woman, veteran or entrepreneur. Disability was his only window.
Mayanja hopes he will one day, he will wheel his chair into the August House.

Wheelchair basketball
Mayanja joined wheelchair basketball last year. At the Makerere University court, where Kampala Wheelchair Basketball team trains twice a week, he is popular.
Not that he is a star, but he is passionate, jolly, neat and sociable. Coach Kidega Ola, tipped me to this story and he is proud of him.

And in December last year, Mayanja was unopposed to become interim president of the Uganda Wheelchair Basketball Association, replacing Denis Akena, who absconded duty to stay in Germany.

“I’m still new among them but for my education and connections, they trusted me as one who would take the sport further,” he brags a bit.

He now feels happier and fitter. He prides in the sport which “has enhanced my health and physical wellbeing.”

Advice

To those in Mayanja’s boat his advice is: “Accept God’s will…it helps in the healing process.” More so, explore even the slightest of your potential to be relevant in society “because the world hasn’t fully embrace us (PWDs) yet our life is thrice more expensive than others.’”

To the general public, he begs for lenience and fair treatment of PWDs. Give them as much help as they need. He tells me of a nurse who prescribed him drugs without even talking to him. “I confronted her and she realised she was wrong, but others don’t have that confidence,” he says.

Mayanja is no longer as passionate to share his story because he feels he has turned the corner. But I hope you and I have picked a lesson.