How old where you when you found out you had sickle cell?
I grew up knowing I had sickle cell. According to my parents, I took ill as a child and some of my fingers were swollen and painful so a nurse who lived in their compound had them take me to the hospital for a genotype test and when it turned out that I had sickle cell, they were counseled on how best to care for me.
How were you able to cope with school and sickle cell?
Coping with school was not always easy. While I was younger, I hardly had any problems and my parents always made sure that they talked to school authorities to exempt me from physically stressful punishments and activities.
In the University it became harder, especially since I had to stay on campus, and the hostels were not so comfortable or hygienic. In my second year in the University, I fell ill so often that my grades dropped drastically and I started thinking of dropping out. However, my parents, as well as my academic mentor, would have none of it. They encouraged me and I was able to push through until final year and graduated with astonishing grades.
As a masters student, it was a lot easier and my health disrupted only one exam which I was still able to pass eventually.
Such determination and motivation you have had! How did your childhood and your parents influence you in your choice of career?
I developed a passion for reading very early. As a matter of fact, I could read quite well even before I was enrolled in primary school at age 5. My favorite place in the house was my daddy’s library where he had plenty of books from the African Writers’ Series. I was always encouraged to read both at home and by my teachers at school. It was almost inevitable that I would eventually get involved with the arts.
What do you do?
I work as an editor in one of the most outstanding publishing companies in Nigeria. To be an editor, efficiency in both written and spoken English is necessary and of course, a flair for reading is an added advantage.
What kind of experience and schooling does one need to get your job?
I had to acquire a good first degree in English literature and also pass an editors’ test to get a job as an assistant editor and gradually, I grew on the job.
Describe a typical day on your job.
My day starts at 9 am, which is when I resume for work. Usually, I have several manuscripts to work on at any given time. Often, I hold meetings with the people whose books I am working on, either on the phone or in person. This enables me to get clarifications on portions of the book that might be ambiguous or otherwise difficult to understand and present clearly. I do a lot of research on the internet too because I will be held responsible for the validity of information supplied in a book I have worked on.
Apart from editing and proof-reading, my company also requires its editors to format the manuscripts they work on; this enables us to determine page extents, required style and so on, for the purpose of appropriate billing.
Sounds like a challenging job. How do you manage SCD and still maintain a thriving career?
My number one weapon against SCD is water. I drink an average of 3-4 liters of water during the time I am at work. At home I also drink a lot and I have even formed the habit of drinking water as soon as I get out of bed in the morning. It also helps to have and maintain a positive spirit. This is not always easy though; sometimes I get discouraged, particularly when I have to be absent from work because of a crisis; at such times I worry about losing my job. I also eat well and maintain good personal hygiene. Then again, I see a specialist as often as necessary.
Have you noticed a difference in how your coworkers treat you once they know you have SCD?
My co-workers do not know I have SCD. I don’t have the typical features and I never present myself as frail or incapable of doing anything that everybody else can. They might suspect because I call in sick more than anyone else, but the issue has never arisen.
In this part of the world as in many others, sickle cell patients are viewed as burdens and are treated with pity and some will even go out of their way to offer unsolicited advice on how to care for your health. (funny). Because of this, I hardly let people in on the fact that I have SCD, until it becomes absolutely necessary. I am not ashamed of being a sickle cell patient, but my life is easier sometimes when people don’t know.
That’s quite understable. I’ve heard that there is so much more stigma in other countries when it comes to sickle cell disease. What advice would you give to someone wanting to join your profession that has sickle cell?
It is achievable! If anybody else can do it, so can you. You are as good and smart and capable as the next person, sickle cell or not.
[stextbox id=”custom”]Modestly acknowledge your limitations, stay focused and determined, rely on God for strength and you can do anything.[/stextbox]
Has sickle cell limited any areas of your life?
I suffer from AVN and this means that I am almost always in pain. I am therefore limited in the kinds of recreation I engage in, particularly sports. At a time, I suffered from a lack of self confidence because I had an obvious limp but I am gradually overcoming this.
When you do reach obstacles in your life, what helps you through it?
My family is my main forte. They are loving, understanding and fully supportive. I have a younger sister who has sickle cell too, so we often lean on each other for support. When I have crisis, she is a wonderful ‘nurse’. My faith in God also helps me through. I have learned to pour out my heart to Him in prayer and He strengthens me.
Do you have regular pain (more than 2x a week)?
Apart from the AVN which bothers me quite often, I don’t suffer pain often. I have a crisis like once every 3 months. I have pain-killers which help me cope with pain whenever I experience it.
What is your daily medication regimen and what medications do you take when you are in pain?
I try to take Folic acid regularly but honestly, I often forget or ignore taking it. When in pain, I rely on Tramadol or Ibuprofen but if the pain is severe and I have to go to the hospital, I often get Pentazocine injections to help with the pain.
How has sickle cell affected your personal life?
My family loves me and they are always solidly behind me every step of the way. I am single and fabulous 🙂 I have not been able to find a man who is that supportive. I get the feeling that a lot of them are scared of the responsibilities that come along with having a partner that has SCD. I have had two fairly stable relationships but they didn’t lead to marriage. I am 32 and I remain positive that I have all it takes to make a good wife and mother and that at God’s due time, I will find my own husband.
Looking at the 14 year old version of yourself, what would you tell him or her if you could?
You should never let anybody make you feel small or inadequate. Build a dream and pursue it with all the passion in you. You can do whatever you have set out to attain.
Is there anything else that you would want to tell other sickle cell warriors?
The battle is tough, but always look on the bright side. Everyday, I thank God for the gift of life and I know I can become one of those people that other sickle cell sufferers will look at and be encouraged to go on.
Thank you Stella!