By Yemisi Ilo
I also have MS and I am currently in Singapore – where by His grace I will finally halt the progression and hopefully and prayerfully reverse some if not all disability.
I spoke to Zara on Tuesday. She said she was being given ‘Agbo’ to drink by her family and that it was killing her. Those were her exact words. I told her to NOT drink it. With an already compromised immune system – Agbo is bullshit. It is poison. MS is not malaria.
I gave Zara clear details of exactly what she needed to do to try to get well. It isn’t easy AT ALL – I should know but unfortunately for her, she was surrounded by very ignorant people at the end who felt that they knew best.
I first heard of Zara when I read about her on Linda Ikeji‘s blog a year ago. I got in touch with her immediately and started a Skype friendship. I was in London and she was in the States (US). We spoke regularly. When I went back to Lagos, we would WhatsApp and I would call her. When she came to Nigeria in October last year, I went to see her and she was surprised that she could move better than me! I organized the Battabox interview (which we did at my parents house). She said she didn’t want to live with her mum in the States – yet she had no one to look after her there apart from her mum. She needed someone. She even wanted to come and stay with me, but I am married with small children and my own MS issues were already enough for one house.
[box type=”shadow” ]READ: Zara’s family says no one has paid them condolence visit[/box]
I am so pissed off, so angry, so fucking sad, teary and frustrated. If I had been in Nigeria, I would have gone to pick her up on Tuesday when I spoke to her. She was so desperate to leave Ogba. She said she had a return ticket to America and would try to leave ASAP. I gave her my neurologist’s number so she could get some steroids to help her get over the horrible relapse she was having. Also to get her to explain the condition to Zara’s family so they would realize that this was not an ‘Agbo’ matter.
I have had MS for nearly 10 years. My walking has deteriorated and I am currently alternating between a walker and a wheelchair. Zara was worried that she wouldn’t get married and have kids – I told her that I had 4 kids and was happily married and continued to work and that there was hope.
I have always been vocal about MS and even appeared on a ‘Moments with Mo’ episode talking about it. There are many Nigerians with MS – I know a few but they want to keep quiet. Their families are embarrassed. Why? I don’t know? It can happen to anyone at any time.
Granted, I am extremely fortunate to have the strength of character and a loving and supportive and enlightened family to deal with this HORRIBLE condition that has led to this opportunity for me to undergo Hemapioetic Stem Cell Transplant (HSCT) – Google it. It has taken donations from over 100 people to do this. It costs over $150k (N24,727,501). I told Zara that since she was a US citizen, she could get on a trial at the University of Chicago under Dr. Burt for free.
I just want people to know that MS didn’t kill Zara – ignorance did. As well as our fatalistic attitude in Nigeria where everyone prays and no one takes action.
*Ilo is a creative consultant with many years experience in book and magazine publishing, film production as well as project and artist management.
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