By Tola Dehinde
I know since the beginning of the year I’ve been sharing stories of people living with sickle cell that would make any parent who has a child or children living with sickle cell despair. My intention in writing those articles was not to make anyone afraid but to inform them of worst-case scenarios. As a result, I thought to write about myself for a change and encourage anyone who’s living with sickle cell, anyone younger than me, or parents with children living with sickle cell, that you can achieve what you set your eyes upon.
Due to the nature of sickle cell, one’s education gets disrupted immensely. I was no exception to that when growing up. But thankfully, I had parents who visited my primary and secondary schools to explain sickle cell to the administrators.
But when I left home to study abroad, as a young adult, talking about living with a disease was of no interest to me. The culture back then was different from now. Back then, you kind of kept your secret, secret and one didn’t talk about feelings or how one was affected by an illness. One was expected to just get on with the illness and life. But now, everyone is into their feelings, which I believe is a good thing because then, consideration could be given to those who live with sickle cell in the educational system and also in employment.
Anyway, I did my bachelor’s degree and I didn’t let the university know that I had sickle cell. I was sick a lot throughout the three-year course because I was working full-time and studying part-time so I could feed myself and live in a country where I had no immediate family member who could help me or support me. I studied a course that I loved and knew well, but unfortunately, because of sickle cell during my exams, I didn’t do as well as I wanted to. My degree didn’t really change things in terms of employment for me because I was already working for an international organisation.
Years later, I decided I wanted to study further and get a master’s degree. I was still working full time and I decided to do a two-year part-time course. This took its toll on me, and I actually couldn’t finish the course because health-wise, I couldn’t cope with it. Since I was working, I really didn’t need that master’s for my job; I forgot all about it and continued working.
When COVID hit a couple of years ago and people living with sickle cell were told not to go out, I was homebound. The situation opened the door for me to write my books while in isolation. By the time COVID ended, I had written two Christian books and my book on sickle cell. I then made the decision that I actually wanted to go and do my master’s again. It was as if I had left a door ajar when it came to my education. Mind you, I am talking decades later.
In 2021, I embarked on a one-year master’s course. It was highly stressful. I hadn’t been in a higher institution in nearly three decades. Things had changed so much from when I did my initial MA. Most things were accessed online, and I opted to do my course online due to sickle cell. This time around, from the onset, I informed the university that I was living with sickle cell, and that I would need help, so it was all about full disclosure.
Those who know about sickle cell know that sickle cell does not like stress. Typically, or shall I say, unfortunately, I started having one crisis after another at the beginning of the second term. I had sickle cell crises, pneumonia, and acute chest syndrome. I was in such a bad way that I thought I was going to die. Due to the behaviour that I had received in the hospital over the years, whenever I have a crisis, the hospital will always be my last choice. Please do not follow my example; I’m able to do this because I have lived with sickle cell for over five decades and I know my body and sickle cell symptoms.
I did eventually have to go to a hospital, and I was admitted. My haematology consultant was extremely concerned and worried about me. I wasn’t that worried about myself because what I had been through at home was worse and here, I was presenting myself to the hospital at the tail end of it all. Of course, after doing x-rays, they saw the tell-tale signs of all the different things that had happened. I remember that I had to discharge myself from the hospital because I had books to read and coursework to submit. It was an extremely tough time for me, and I wondered if I was going to be able to finish this MA or give it up like before. Towards the end of all the various crises, I noticed that I had gone blind in my right eye. This is called sickle cell retinopathy. This occurrence made studying, reading, and writing, particularly hard for me, but I kept forging ahead and pushing myself towards the goal of what I wanted to achieve. It was a long road of blood, sweat, and tears, but I was determined to not only finish this MA course but also to finish well, which happened. All through this period, to date, I made sure I was also sending in my weekly column on sickle cell. Recently, I finally agreed to eye surgery, which was successful.
Sickle cell has a way of rearing its ugly head when one is about to do something important. My small advice is, don’t let it stop you from moving forward and achieving your goal. It can only be a temporary setback. You can always go on and start again like I did, decades later. I hope this personal account of a time in my life will not only encourage you but equally motivate you to keep on forging ahead sickle cell or not.
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