Dying on their backs

How families, poor healthcare are helping victims of spinal cord injuries to early graves Victims of spinal cord injuries in Nigeria are having a tough time as caregivers lacking resources to care for them often resort to extreme measures, including poisoning to end the suffering of their victims. In Osun State some of the victims […]

• How families, poor healthcare are helping victims of spinal cord injuries to early graves

Victims of spinal cord injuries in Nigeria are having a tough time as caregivers lacking resources to care for them often resort to extreme measures, including poisoning to end the suffering of their victims. In Osun State some of the victims have banded together to help themselves.

Mr Yususf Olatoye, 59, is about to retire from teaching at Anglican Government Middle School, Edunabon, Osun State. Retirement is something he dreads because his life is literarily going to be at stake.

In 1992, 27 years ago, he suffered an accident that left him with a spinal cord injury. He was lucky to retain his job and his salary has helped him cope with the treatments. But without a regular salary to help pay the medical bills, retirement is not something he looks forward to.

“I wish I have money like the popular musician, Yinka Ayefele who is also a victim of spinal cord injury and eventually became a father,” he said.

“Sure, I can also become a father one to enable me reproduce and have even if it is only one child. Life as a victim of spinal cord injury is difficult. At least, I’m managing now but what will happen to me when I retire? That is my fear,” he said.

Mr. Olatoye is one of the better-disposed persons living with spinal cord injuries in the country. Others are completely reliant on others. And in some cases, some of them are suspected to have been helped to an early grave by their families, who could no longer shoulder the responsibilities.

“Many of the victims of spinal cord injury are still been locked up in many communities. In fact, many families have poisoned some of them under the pretext that they have become useless and they cannot continue to watch them suffering,” Mr. Olayemi Lucky Adeleye, Chairman of Spinal Cord Injuries People of Nigeria (SCIPON), said.

Though born without any physical deformity and having lived normal life, at least, for some time, people suffering from spinal cord injuries are mostly victims of accidents that have deformed or disabled them, incapacitating them.

Under the auspices of Spinal Cord Injuries People of Nigeria (SCIPON), the affected persons in Osun State have affiliated themselves to the Joint National Association of Persons with Disabilities (JONAPWD), which also has Association of the Blind, Nigeria National Association of the Deaf, National Association of Persons with Physical Disabilities, National Association of Persons with Intellectual Disabilities and National Association of Persons Affected by Leprosy.

JONAPWD has more than 24 million members across the country with 57,000 members in Osun.

The situation of victims of spinal cord injury is sensitive and requires careful management and adequate support from people around them. Unfortunately, their cases are often mismanaged. In most cases, family members of many of the affected persons would not be able to endure as most victims need life-long care. Often, they are neglected and abandoned to rot and die, a claim Adeleye emphasized.

“Many of us have died due to poor handling of our cases even at the hospitals. Even many medical and health workers do not know how to handle victims of spinal cord injury, leading to a lot of complications. For instance, some of us suffered abnormal passage of catheter through the stomach to the bladder. Also, some of us are on colostomies,” he said.

Colostomy is a surgical intervention where an opening is made in the large intestine and a stoma appliance is attached to create an alternate channel for faeces to leave the body.

Adeleye, 47, studied marketing at The Polytechnic, Ibadan in Oyo State and was working as a timber contractor when he suffered a spinal cord injury in 2004. Fifteen years later, he is struggling to stay alive.

Adeleye said the affected persons feel dejected and that life has become unbearable for them due to lack of support and the psychological trauma over their condition. For him and other victims, nothing would make them feel more alive than being properly reintegrated into society.

Unlike Olatoye, mentioned earlier, before his accident, Ayodeji Damola, a 39-year-old vulcanizer, was already a father. He had two children he was striving to cater for before a motorcycle accident 10 years ago, when a car crashed into him, injured his spinal cord, leaving him unable to walk.

He has been unable to earn a living since then and has been unable to carter for his family. Other than the excruciating pain he has to live with and the challenge of his medical bills, the welfare of his family has been a major concern.

Adeyemi Sa’id, a father of six, was working as a security guard when armed robbers shot him in the back five years ago. Since then, it has been a tough struggle to cling to life and to care for his family.

“We have sold many property and my relations and good Nigerians really assisted me,” he began, “But [we have]nothing more to sell and those assisting me appear to have been drained and withdrawing. My children are still in school and I need help so that they can continue with their education,” he said.

His case is not dissimilar to Olakusibe Olanrewaju, a businessman who also suffered spinal cord injury 10 years ago. His business has suffered and he is now only grateful to be alive, even if life is a basket of pains.

Adeleye, Olatoye, Ayodeji, Adeyemi and Olakusibe are just five out of the officially recognised 47 victims of spinal cord injury in Osun state.

Adeleye explained that financial constraints has meant they use old clothes instead of cotton wool to dress their wounds while kerosene serves as disinfectant. They also use leaves instead of bandage (gauze) and strings in place of plaster.

No surprise that the chance of infections have only increased in these instance.

“When we realised that we really need help, we eventually came together and formed SCIPON,” Adeleye said.  “We decided to help ourselves by coming together to speak with one voice. That opportunity of coming together alone was a major healing for us, to start with. We realised that we need a place that will serve as a meeting point for us. That was how we ran to CSDP [Community and Social Development Project] for assistance when we learnt about the laudable assistance CSDP is rendering to communities and the less privileged. We were able to raise the required 5% ourselves and coupled with the assistance of the Community Development Champions and other well-wishers.”

Through this partnership, they were able to build a centre for nearly N4.5 million

“We contributed N222,544 and the Osun Agency for Community and Social Development Project (CSDP) supported us with N4,229,340.  We equipped the center with medical materials worth N3.7m. We contributed N189,000  for this and CSDP supported us with N3.6m. We thank God, Osun State Government, the World Bank and Osun CSDP for this gesture which has brought positive change to our lives. Now our members go to the center to rub minds, keep hope alive and refresh and get free medical materials,” he said.

The support has really alleviated the situation of victims of spinal cord injury in Osun and significantly addressed part of their challenges. That is only part of the problem in their life-long battles. But the struggle of economic empowerment to carter for their families remains a huge challenge.