Dr. SEA Initiative: Could you please introduce yourself to us?
Arrey: I am Arrey Echi Agbor Ndakaw. Arrey to those who know me.
Dr. SEA Initiative: Thank you Arrey. What do you do for a living?
Arrey: I di fry beignet 🙂 (Ok that was a joke). I work with a private law firm here in Yaoundé as an IPO (Intellectual Property Officer)
Dr. SEA Initiative: You got me on the beignet part. How old were you when you found out you had sickle cell disease?
Arrey: I was diagnosed at age 2.
Dr. SEA Initiative: Wow! That was pretty young. What were your fears growing up knowing you are diagnosed with sickle cell disease?
Arrey: Well, at age 2 I didn’t know much. I would say from that young age, I only knew my mum always gave me folic acid and a lot of “njama njama” (vegetables) per doctor’s reminder each time I got to the hospital. Why precisely? I didn’t quite understand. I guess life was pretty much OK unless when I was sick or prohibited from doing some things without quiet understanding why.
Going through my hospital books and asking a few questions helped me understand my condition as best as I could at that young age. I went to school, weaved dreams like any other young person until I would say, reality kicked in when I got older and realized some of those dreams may remain castles in the air because of society’s perception of people with sickle cell. And of course there were worries about each crisis episode could be the one I take my last breathe.
Dr. SEA Initiative: I guess the realities become less beautiful as you grew up and had knowledge of your health status. Who was the first person other than your family members did you reveal your diagnosis to?
Arrey: Yes some realities become less beautiful but again, by keeping a positive spirit despite the odds, I learn to create different beautiful realities around my heath condition. I can’t remember if I ever told anyone directly back then. I think some friends and neighbors came to know due to the frequencies of pains and hospital stays.
Dr. SEA Initiative: I admire your attitude towards your dreams. You don’t give up, but you just make different beautiful realities, no matter what. How did you manage to cope with your education being sick?
Arrey: Thank you. Life goes on and a girl has got to live right? I love books. In fact they are my favorite companions growing up since I didn’t have the strength to keep up with the kids I was growing up with. So while most of them played with joyful noises, I buried my head in books and let my imagination soar. This love for reading was of great help with school. It was not easy because I often had to write exams in pains or straight from the hospital. Also, I lost my hearing before completing primary school. That made things difficult. I was always lagging behind in notes. However, one way or another, I moved ahead in school until I finished.
Dr. SEA Initiative: That was a challenging experience. But not only did you survive, you thrived. Respect! What influenced your choice of career?
Arrey: Chomecam (unemployment). I am not a lawyer, neither did I study law. Let us say it is where I found my daily garri. As a young girl, I wanted to be a medical doctor. That dream died when I entered college. Suffice it to say hearing difficulties and the way scientific formulae were explained left me more confused so I opted for social sciences. I read Gender Studies/Sociology & Anthropology at the University of Buea. I also read Human Resource/Development studies in Pan African Institute for Development-West Africa. Difficulties in securing a job lead to my present career. On the job training enabled me master the job and the rest is history.
Dr. SEA Initiative: Chomecam! That was quite a motivating factor. Once again you demonstrate that positive attitude of making new and beautiful realities despite the obstacles. Much respect. Can you describe your typical day?
Arrey: My day starts at 8:30 am and ends at 5:00 pm. I get up at 6 am most of the time. I do the essentials like praying, reading and meditating on scriptures, watch a TV program, breakfast, get ready for work, reply text messages you know. At work, when there is nothing to be done, I distract myself with social media especially Facebook where I engage in some debates and fun. Back home after work, I eat, watch an episode of a series I follow, check on my blog or write a new blog post. I also do some research, Facebook, pray and sleep. That’s basically.
Dr. SEA Initiative: Your typical day is one most of us would identify with. What would you do differently if you were not diagnosed with sickle cell disease?
Arrey: My whole life has revolved around living with sickle cell. Somehow, despite its challenges, it is difficult to picture life differently. It has its moments which I couldn’t trade for anything. Maybe there would be some things I would have done, some daring risk taking or my life dreams would have been fulfilled differently I wouldn’t know. But I sincerely can’t picture what I would have done differently because my health condition more or less mold me to the person I am today.
Dr. SEA Initiative: And an amazing person you are today. When you encounter all the setbacks and challenges, what pushes you through the storm?
Arrey: Love and faith. The love of my family especially and my friends is a big push. Then faith that my God is able and always ready to see me through no matter what. And just maybe a little stubborn determination on my part because I Love life.
Dr. SEA Initiative: There are three things that last; Faith, Hope (call it your stubborn determination) and Love. You possess all and it is for that reason life loves you as much as you love it. Do you have regular pain, like more than 2 times weekly? How do you cope with the pains and your work life?
Arrey: Hope is certainly eternal! I had my last pain crisis a couple of weeks ago and that was one year plus after my last crisis. I have learned not to be too panicky when I have crisis, so most of the time my regular over the counter pain killer help and I don’t stay away from work. Sometimes, I have to stay home or head to the hospital depending on the severity of the pain. My boss and colleagues are supportive so it doesn’t affect my work life that much.
Dr. SEA Initiative: Your pains don’t seem to give you a lot of worries. You seem to have mastered them. How has the sickle cell disease affected your personal life?
Arrey: There are times I go through A LOT of pains especially as teenager/ young adult. But I think how you take care of yourself as you get older helps minimizes the frequency and duration of pains. On personal relationships, maybe this would be one of those castles in the air dreams. Do I have admirers? Yes. Is there someone out there? Maybe. Still, I am yet to find that someone who would make me believe they are ready to go the whole nine yard, because they value me as a person not because of some misguided sense of pity. So, as far as relationship are concerned, it is just me, myself and I.
Dr. SEA Initiative: Castles in the air. I am sure you would agree with me that dreams don’t turn to dust, especially for someone with a stubborn determination like you. For now, I guess we keep the faith alive. Looking at the 14-year-old version of yourself, what would you tell her about life and success?
Arrey: I would say life as we know it is fleeting. Take time to enjoy it, but more than ever take time to value and appreciate it. Don’t get so absorbed in chasing life that it pass you by. On success, it is good to be successful but it is far better to climb the success ladder with hard work and dedication and your character, dignity and integrity intact. Strive for these and success will be yours whether your bank account is bursting or not. Because true success is not about having a huge account and attending all the social functions. It is about the number of lives you impact positively while remaining humble.
Dr. SEA Initiative: Wow that is deep, simply deep. Now I consider myself the 14 year old Arrey Echi. No one can afford not to listen to that. What is your perspective on how society approaches the topic of sickle cell disease? Is stigmatization a topic associated with sickle cell warriors?
Arrey: Stigmatization most often borne out of ignorance, is the load of every sickle cell warrior. No matter how immediate family and friends make you feel, as a warrior, you will experience this from people out there. The government’s failure to address this as a public health concern makes it increasingly difficult for those not affected by it in any way to understand what it entails. That is why there is a need to raise awareness, to educate people and make them realize that sickle cell is a condition not a death sentence. Neither is it as a result of witchcraft or a curse to ruin families.
Dr. SEA Initiative: Stigmatization seems to be inevitable with sickle cell disease. And while waiting for the government to take a bold action, we would begin to educate our peers to the best of our abilities. That ignorance must go. What is your message to other sickle cell warriors?
Arrey: My message is simple. Life is not without thorns for everyone irrespective of what or who they are. So as warriors, we should embrace these thorns and keep our heads high. We should make our SS from Sickle Sick to SICKLE STRONG. We should learn to speak out, nobody will tell it better than us because, we are after all, SICKLE STRONG WARRIORS.
Dr. SEA Initiative: Cheers to the Sickle Strong Warriors. All other warriors would heed to that empowering message. Let us conclude with your favorite five. What is your favorite?
Arrey: 1 fufu and eru
2 Water melon
4 In music, I really don’t enjoy it much because of my hearing impairment but as a kid, my favorite song by an artist was Ndedi Eyango’s “You must Calculer”. I still feel my body shake each time I feel the vibes till date. In literature, I read any good book especially ones with take home lessons. I am however, partial to Maya Angelou and African Writers. It is easy to identify with them.
5 I treat each day as a holiday.
Dr. SEA Initiative: Thank you very much Arrey for taking this time to share with us. You are really an awesome person with a beautiful soul.
Arrey: Thank you very much for taking the time too. Your willingness to share my story with your audience is a very big boost to keep speaking out. I hope this inspires someone out there. Thank you.