Sickle Cell didn’t hinder my achievements —Debola Benjamin, 60-year-old sickle-cell patient

Sickle CellAdebola Benjamin, the founder of Sickle Cell Support Center, Abuja, will clock 60 years on November 9, 2018. In this interview by TAYO GESINDE, she talks about her struggle with Sickle Cell disease and how she did not allow her health status to stop her from pursuing her goals and dreams in life.

WHAT was growing up like for you?

I was born on the 9th of November,1958, to a family of seventeen, and the family discovered at the age of seven that I also had sickle cell disease when an older sister died and our father insisted that he needed to know the cause of death. The result was that the whole family was tested for sickle cell disease. And it was discovered I had the disease. In spite of this, I went through primary and secondary school education. I went to the Remo Secondary School for four years to experience boarding school. I studied English and Philosophy at the University of Lagos from 1979 to 1982, joined the Federal Civil Service in 1983 and retired voluntarily in 2006 to pursue my life goals and dreams. I have attended so many training programmes and started a Sickle Cell Support Center in 2011 to help others. I have travelled to at least 28 out of the 36 States in Nigeria; to the United Kingdom, Germany, United States of America and to Dubai. Sickle Cell did not hinder my achievement, and I believe that if I had the privilege, I would have done much better.

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How do you feel clocking 60 years?

I feel really great and give God all the glory, it is still amazing to me because one terrible consequence of Sickle cell is that, it puts a limit on your mind and it is almost impossible to make long term plans. A lot of times, it took the grace of God to keep my life, and whenever I had terrible crisis like that, I would give out the things I had, including lands and whatever was precious to me at the time because I didn’t want to leave a burden for anybody in terms of them trying to get things sorted out. However, the salvation of Jesus Christ brought a great change into my life and attitude. I discovered that no matter who you are or what your challenges are, you can be a vessel that God can use to bring comfort to others who do not have your kind of benefits. It was a sudden realisation that happened just like the salvation of my soul. I started reading relevant books and thank God for the ministry of Papa Adeboye, Bishop David Oyedepo and Dr Olukoya that instilled strength, hope and a ‘Can Do’ spirit that make you want to leap over the wall and run through a troop to redeem the years you already lost doing nothing. I am grateful to the Almighty, who surrounded me with the right people I needed; parents, pastors, friends, colleagues at work and persecutions that pushed me forward by force. the journey has been rough but delightful. I have written a book on ‘VICTORY IN CRISIS’’ and a lot of articles.


  What informed your choice of career?

It was the Nigerian accident, I wanted to be a lawyer but somehow the admission did not come through, and I had no choice but to take what was available and as God would have it I ended up as an administrator in the Federal Civil Service, a very challenging but interesting job. I also learnt sewing and became a trader. I would make men’s shirts and take them out to sell, this made me to travel widely, buying fabrics to make and sell and also having a shop with tailors to make the clothes, very exciting but stressful.


What price did you pay to get to where you are today?

Sacrifice, discipline and a determination to walk in love so I would not miss heaven. I was always a worker not only in Church but started Bible Clubs everywhere I lived so as to win the souls of children and young people into the Kingdom of God and raise people who would not be more problems to the nation of Nigeria.

In working with young people, you have to provide education, follow them up, empower, inspire and motivate until they can stand on their own. I can never stop thanking God for giving me the grace for this assignment, because in the process I gained sons and daughters who love me so much as the help the Almighty sent to rescue their lives from destruction, it is not yet over because we still have Bible clubs now and children who are going to school from the provisions of God.


 What is the most defining moment of your life?

I retired voluntarily from the civil service since 2007 and that was my defining moment. It was a time that I had to learn to float, swim and stand or sink and die. Working for the government of Nigeria, provided all your needs and you only needed to get to work to have those needs met. Stepping out of government into a world of uncertainty is a different ball game, because you don’t even know where your next meal was coming from. I was a very independent person and had made up my mind that I would rather die than to beg or be a liability to anyone, to God be the glory, help came from above beyond my imagination and unlike most civil servants who die within five years of retirement, I am here, eleven years later and still counting. It was rough, it was tough finding your place in the private sector where I never had a clue, but all the praise be to our God.

What motivated you to start Sickle Cell Support Center?

At the age of forty, I had a really terrible crisis and I was living in Abuja then, far away from home and the care I was used to, I was treated at the National Hospital and had to join the Sickle Cell Clinic for follow up and it was there that I discovered that I knew so much more about managing sickle cell than most of the people I met. I was still working and could only make a few friends, but after my retirement, the Lord gave me the opportunity to attend the annual conference of the Sickle Cell Disease Association of America and it was an overwhelming experience just seeing the amount of work that had been done by America on the management, and sustenance of people living with sickle cell disease even though they were not even up to two million in the whole of America. I was jolted to the reality of how backward our maintenance of human beings made by God and born with a challenge that is majorly man made and yet we did not have any structure in place to help such people survive the condition neither did the nation have any plan of enlightening the populace about breaking the cycle of sickle cell in Nigeria before it becomes uncontrollable.

Right there in the United Sates, I sat down and designed the structure of the Sickle Cell Support Center, enlisted the help of friends and family, because I didn’t want to get involved in the racket of getting grants and seeing grant opportunities as free money like most Nigerians do. I also wrote the book which was published only recently.  I decided to learn how to run the Center on the little that we have and empower members to rise up to the level where they would be able to support the work by themselves. It has been tough but worth every minute of the assignment.


What are some of the achievements your association has recorded?

Life and survival of the members, out of the thirty of us who started, only five have passed away and I believe that once there is life, there is hope. We imbibed the lifestyle system of survival, and it has not only helped every one of us but the Almighty God also brought a Lifestyle Medicine Guru into our lives and now we are being tutored by a trained expert on self-care and lifestyle management of sickle cell disease, it is so exciting. We do not have any money or funds from any organisation but we have a membership of almost eighty faithful and excited people and goodwill from a lot of our friends and family members, I believe this is a great achievement.


What do you think can be done to eradicate Sickle cell in our society?

So much, but if we can just care about the other person, and put ourselves in other peoples’ shoes, we would not keep carrying the money meant to improve the lives of others into little holes in the ground like rats or going abroad to lavish the money like the prodigal son. Sickle Cell eradication is everybody’s assignment, and we must all rise up to the task by ensuring awareness, enlightenment and enforcing the fact that non-compatible people should look for other spouses.


What advice do you have for Nigerian youths?

A broken engagement is better than a long life of everyday crisis and sorrowful marriage. Sickle Cell will make the love you had for each other to fly out of the window and bring you to poverty.