Hello Joy2Endure community, I trust everyone is doing absolutely great. I know it has been a while. I have been busy with awareness campaign especially as Sickle Cell Day comes up this June 19th. I will fill you all in on that later but for now, I wish to introduce you all to one very amazing SickleStrong Warrior, who in line with the awareness campaign theme, decides to break the silence and share her story with us. Please read on and let us know if this inspires you or someone you know to also join us in breaking the silence surrounding Sickle Cell Disorder (SCD). Enjoy.
Joy2Endure (J2E): Thank you for agreeing to break the silence and share your story with us. Can you please tell us about you?
Ms E.E.BETTY (E.E.BETTY): I’m Miss E.E Betty. I’m first child in a family of five and the only sickler in the family. I’m in my 30s, mother of one and I work at the Ministry of External Relations, Cameroon.
J2E : Thank you very much. First in family and only sickler I guess has not been easy. How has growing with SCD shaped your life?
E.E. BETTY : Well in the beginning, that is during my tender age, I didn’t know what I was suffering from exactly all I knew was that, I was treated differently from my siblings and I was looked upon as a special child in the family. When I got to know what I was suffering from I found it easy living with SCD, despite all the pains and stress I was going through. Today, I can say that as a sickler, I’m not that different from any other human being.
(photo credit Ms Betty)
J2E: I love the way you put it and especially the conclusion. Not different at all. Knowledge of what you are facing is equally important because it makes it easy to face the condition head on. You spoke about being a mother. Congratulations on motherhood. Can you tell us how this journey of motherhood impacted your life?
E.E.BETTY: Well being a mother as we all know is the dream of almost every woman. To have someone call you that always brings joy and happiness to your soul. As I will say before my pregnancy, very few people believed a sickler could put to birth. This I will say even my parents worried about me having to leave their side someday talk less of having a child. But with the coming of this child in my life so many people’s thoughts about SC patients got to change. It gave me a sense of belonging and that was how I got to believe in myself. What happens with the SC patients is that they are treated by the society as not being capable because they are fragile and weak in nature. All these work against their psychology and they conclude they are not meant for certain activities in the society. I have being through it and I know how it feels like. What I can say is that as an SCD Warrior, you just need to be daring and at same time be careful and very prayerful but don’t let go of your medications.
J2E : That sums it up very well. I guess the “half dies” dare not dream or hope. But you defied that and are daring others with SCD to live and dream while taking care of themselves, thank you. Now, let’s talk a bit more about your job. External relations that mean na wona di see all dat big pipol for ara contri first nor?
Can you describe your typical day and your relationship with your boss and colleagues?
E.E.BETTY: Well, well that is what people say oh. It’s just the nature of the profession. On to your question; .as far as my work in the ministry is concerned, I won’t say it’s always that tedious. There are however, some days that are very tedious and exhausting. There are periods that I have to work under pressure because I know I may be holding someone’s future in my hands. Nonetheless, I always try not to wear myself out. I make sure I work at my pace. This too because my boss understands my situation and he is very supportive so I have no problems at my job side be it with work, my boss or even my colleagues.
J2E: I am glad the work milieu is favourable to you. Keep it up. Let’s go back to your being the only sickler. Knowing the kind of society and mentality we have, did you have to face some unpleasant situations because just maybe, your situation was attributed to witchcraft?
E.E.BETTY: Hahaha you can say that again. One could never go without such attributes. I encountered a lot of that even from my paternal family while I was growing up. While in primary and secondary school, I was labelled “half die” on countless occasions by my classmates. So during primary school days I didn’t have friends because I was scared of the outcome. They would provoke me and make me cry all the time. I remember I had to fight while in class seven because I refused to show a girl answers during the common entrance examination so she started insulting me. That day, I had to defend myself so I fought back. I entered the university, the students were more comprehending, I guess it’s because they were more matured and understood what SCD was all about.
J2E : So very sorry. I guess that is the bane of contention of every SCD warrior. At one point, we just have to fight back and stand for ourselves. To the next question; how frequent are your crises and what steps do you take to minimize them as much as possible?
E.E.BETTY: Well, my ever first crisis I experienced happened when I was about eight years old. Then the crisis became frequent as I grew older. Between the ages of twelve to twenty, the crisis became more frequent. I had like two to three series of crisis a month. Whenever it happened, they used hot water to massage my joints then I will take my medicines (that is the anti inflammatory drugs generally known as pain killers). Again, whenever the pains persisted they will use drips alongside the pain killer injections. That was how the crises were minimized
(an idea of our home pharmacies)
J2E: And now as an adult, what steps do you take to minimize the frequency of crises? Are there some trigger factors you now understand and try to avoid?
E.E.BETTY: What I do now is I try to keep myself warm, I avoid over crowded places most especially where people smoke and I keep away from alcohol because, they all trigger the crisis. Also, I try as much as possible not to over work myself that is the way I try to minimize the frequency of crisis. If they happen when I’m all alone, I know exactly what to do as I earlier mentioned or better still, contact any relation be it a family member or friends who are always available for me and they take me to the hospital. Again, I have friends who are medical doctors and whom I can reach at any moment. so now I’m no longer scared living alone and my family has gotten used to it.
J2E: Way to go warrior!!! Given the fact that our society generally, prefers to keep the condition of the warrior child under tight lock, what motivated you to speak out?
E.E.BETTY: After haven been through so much during my childhood, I realised that all that needed to stop. The fact that they see us like the “half dies” in society and referring to us as witches and wizards just to say that society generally consider SCD a mystical disease, I said to myself that someone needs to come out and speak on this. I have had to discuss this with some SC parents who saw me as a source of inspiration for their children. Two of them told me they were about giving up until they met me. So, someone needs to put an end to all the stigma attached with SC patients. That is what motivated me to speak out.
J2E: What a motivation that was! Those who have worn the shoes feel the pinch better and are better placed to speak out. Thank you for raising your voice to inspire others. And now our last question. What word of advice or encouragement do you have for Warriors, their parents and the society at large as far as living with SCD is concerned?
E.E.BETTY: What I have to say is this; first to the warriors, they should not let the disorder weigh them down and let the fact of being fragile not hinder them from daring in life. Just bear in mind that to respect the do’s and don’ts principle, but most especially, hold on tight to prayers and medications they take. To the parents, these children need their full support and love most especially when in crisis because, that is when they are at their weakest. It’s this love that helps in forging on in life. Try not to make them feel as if they are different from your other children most especially, when they are still very young because; they will not understand. To the society, there is an urgent need for sensitization on SCD so as to stop all the stigma and for SCD warriors to be accepted by all. They are like any other human and so need to have their place in society. SCD patients are known to be very intelligent and are always known for their great ideas and manner of visualizing situations. They are one of that category of patients who have little time to attend classes due to the frequent crises attacks yet, are always amongst those who excel a lot. This alone explains the level of their intelligence thus the society needs them
.J2E: Very aptly said and a perfect end. I hope this inspires a warrior or warrior parent out there. Thank you so much for taking the time to raise your voice by breaking the silence and sharing your story with us. Keep the FIGHT, Warrior.
E.E.BETTY: You are much welcomed.
It takes extraordinary grit and determination to brave the odds and break the silence. I hope someone reading this is as inspired as I was doing the interview.
Keep reading, keep sharing and keep commenting. We are inspired by your comments, thank you.
ARREY E. AGBOR-NDAKAW.