Writing a book related to sickle cell is something that I have thought about doing for a very long time. I have always wanted to do something to create more awareness of the condition and to help others living with it, but I used to think ‘how can I help anyone else if I’m not able to help myself?’ After taking control of my life and my health, I finally got to a stage where I was ready to do what I had always thought about doing. That being said, there was not a strict plan to sit and write a book. I am a firm believer in the saying ‘Nothing happens before it’s time’, and that saying is true to this situation. This book was birthed out of a balance of divine time and energy.
One night I was in a happy and positive state of mind. I was thinking about everything I had done and achieved in the months leading up to that moment and I was feeling exceptionally proud of myself. I realised I was living a life some people would probably dream of, even though I have this illness that’s supposed to stop me. I said to myself,
“Jen, there’s nothing that you can’t do.”
And that sentence was basically where it all began.
My reason for writing a children’s book stems back to my childhood and growing up with sickle cell. My Mom taught me the basics like keeping warm, drinking lots and getting enough rest from a young age. But even though I knew these things, sometimes it was hard because I didn’t really understand why I had to do them. I knew that I would get sick, have to go to hospital, have a needle in my arm and have to drink nasty medicine etc. But why couldn’t I just be like everyone else?
Primary school made it harder because it singled me out. If it was too cold I wasn’t allowed outside at playtimes, and then everyone would ask me why. Sometimes I would contemplate answering but truth was I didn’t really know so it was easier to just say “Miss said I can’t”. The worst thing was, I knew my teacher didn’t really understand why either, she was just following my Moms instructions. Other activities like swimming and school trips were also things that I sometimes had to miss out on. At that age all I really cared about was being what I thought was ‘normal’ in my eyes; I wanted to play outside, have a snow ball fight in the winter and wear a summer dress in the summer. I just wanted to be like everyone else.
As I got older and went on to secondary school, college and work, I kept the same mentality when it came to my health. I used to play my condition down like it wasn’t a big deal, even though it really was. I can remember in secondary school being so blasé when I told my friends I had a stroke over the summer holidays, and had to have blood transfusions every 4 weeks to stop me from having another one. Then there was a time in college when I had acute chest syndrome and I ended up in intensive care. For a long time I acted as if I didn’t remember much and didn’t know why everyone was so worried thinking I was going to die, but the truth is I remember everything; I remember having what I think were hallucinations of myself as a child and of memories of things that had happened in the past; I remember the out of body experience I had where I was literally looking at myself in the hospital bed, while my Mom and Dad stood over me crying; and I remember being in a very strange place where there were loads of people who I felt like I knew, even though I didn’t recognise them all, and one of them coming up to me and saying ‘Not yet’. So I know why everyone was worried and I know what really happened. I have never shared that before because just the thought of it, let alone writing it, still brings tears to my eyes. For me, acting like my sickle cell wasn’t serious and didn’t affect me or make me different was my way of feeling ‘normal’ and being like everyone else.
It has only been in the past few years that I have come to the consciousness that sickle cell is a serious condition, and acting like it isn’t will not change that fact. It also will not help the fact that a lot of people don’t know about the condition, even though it is one of the most common genetic disorders.
During the process of completing my first book, a strong, beautiful Queen asked me ‘Why?’ My response:
“I want to give a young child with sickle cell the peace of mind that I didn’t have.”
I believe that a lack of awareness and understanding about sickle cell made my younger years harder than they needed to be. There wasn’t a lot of information available relating to the condition, and the little that was available was very negative and uninspiring; especially for children. Now as an adult, I feel like there is still something missing for children growing up with sickle cell today. Yes there is tons of information, but information can be boring for children. Yes there are stories, but sickle cell affects everyone differently so one person’s journey will not be the same as another’s. The My Friend Jen series will combine these two things together in a fun way with a positive message behind it.
I urge parents, teachers, doctors, nurses and everyone in a position of influence to buy the My Friend Jen books and encourage others to do the same. Growing up with sickle cell I can only remember being told what I can’t do, but as an adult I now know there is a lot that I can do. I wish for every child growing up with sickle cell, or any other condition that may make them feel like they are different to know this too.