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Busayo Matuluko’s debut YA novel ‘Til Death is unlikely to spend much time on library shelves.  It’s much more likely to be stuffed into backpacks and bookbags or just in the hands of teen readers who love true crime and sleuthing as much as the book’s narrator Lara Oyinlola!  Set in Lagos ‘Til Death invites readers into the not so subtle art of preparing for and enjoying a traditional Nigerian wedding, alongside solving the mystery of where some rather nasty threats (and more than threats) are coming from.  

During her visit to Lagos, Lara participates in her first blood drive for Sickle Cell, something very close to the author’s heart.  She has written for us about what it’s like for her having Sickle Cell, why she wanted Lara to better understand Sickle Cell and how readers might learn more too…

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Coming to terms with the fact that I had sickle cell was surprisingly a harder process than you’d think. Despite the fact that it is a disease I was born with. It’s a disease that made my parents want to move to the U.K. so that I could receive better healthcare if I ever was in the position to need it, and it’s a disease I have seen my doctor for every six months for the entirety of my life.

Yet I don’t think I came to the realisation that I had sickle cell, until I was studying to become a nurse, met a friend at university who also had sickle cell and could really see what the disease did to people, and how lucky I am. How privileged that when people described symptoms of sickle cell disease, I wasn’t able to relate. It wasn’t until university that I experienced some of the prejudice that sicklers faced when I had moved outside of London (a melting pot of cultures) to an area who hardly saw anyone with sickle cell disease. I hid having the disease from so many people in my life because the response went two ways, if they knew what it was, they’d say: ‘Wow you don’t look like you have sickle cell’ or if they didn’t, they’d say: ‘What’s that?’

Then I’d have to awkwardly explain all the things sickle cell disease is:

Sickle cell disease is a genetic blood disorder where abnormal haemoglobin (HbS) causes red blood cells to become rigid and crescent-shaped. These cells can block blood flow, leading to pain crises, organ damage, and increased risk of infections. Symptoms often include chronic anaemia, fatigue, swelling in hands and feet, and delayed growth and development. There is no cure (available for the masses) as of right now, so treatment focuses on managing symptoms, preventing complications.

I have always felt extremely awkward about the topic and being deemed a ‘lucky one’, it felt icky, but when it came to my writing, I had always known I wanted to tell a sicklers story. I just didn’t know if it should be mine, because I felt like it wasn’t ‘valid’. I know now, that isn’t true.

When I had my first ever overexertion induced crisis, I got a very very small insight into what some sicklers face their entire lives. Whilst mine was induced by myself, pushing my limits, there are many sicklers out there who can do everything right but still face these crisis’ every day. This crisis happened around the same time I had come up with the ideas for ‘Til Death whilst watching YouTube videos of a Nigerian traditional wedding, my brain said, ‘it would be so dramatic if she died right now’ and from then, the mystery formed. I didn’t know the ending, and I knew if I was going to attempt to do this, I needed to know the ending. Slight spoilers ahead, but I pride my overactive imagination for the following. Somehow the thread of what if, me being seemingly okay, but still carrying this horrible disease was fine to everyone else but one. Then we had our ending.  Whilst exploring the character in the book, I debated on whether I wanted the sickle cell representation to be covert or overt… but like I unfortunately found out. Sickle cell can be covert, until a crisis strikes.

I wanted to educate as best as I could in ‘Til Death whilst also telling a layered message. I have always felt so conflicted about the statement, ‘sickle cell needs to be eradicated’ because whilst entirely true, and absolutely should be… I am glad to be alive. With my character, I wanted to find the balance of valuing one’s existence, but also appreciating the right battle of finding and advocating for a cure. As with sickle cell, prevention is better than cure (especially as there is none.) But I also wanted to show the vulnerability that came with living with such an unpredictable condition. How one day everything can seem, seemingly perfect and the next, everything can be thrown upside down.  I hope I discussed the nuances of the disease, and also spread awareness as best as I could with ‘Til Death.

If you could take anything away from this piece of work, I want the most important message to be, please sign up to donate blood. It could save a sicklers life. You can sign up here

If you suffer from sickle cell and are reading this: you deserve to be here, you deserve a life full of happiness and love, and I am so glad you’re here.

Many thanks to Busayo for sharing her perspective of Sickle Cell and including it in her books.

You can read more about ‘Til Death below and if you are often on the hunt for books that feature chronic illness or disability please get in touch about  a bespoke list here.