Growing up I felt special, because that was how my parents treated me; it wasn’t preferential treatment per se because they treated us all equally, I wasn’t exempted from any house work except the very strenuous ones. As early as primary school I knew I had sickle cell anemia but that was all there was to it. I grew up a normal kid who had special needs, because that was how my family saw me. It continued this way until secondary school, that was when the feeling of something might be wrong with me started coming to me; schoolmates will tease, at times it was the attitude of some teachers. Then there where those who felt I would die anytime soon and thus treated me like I was a piece of china- breakable. People’s attitude got to me more than the condition itself; I didn’t know how to deal with it but the genetic counselors we worked with came to my rescue. It was sometime in senior secondary that I started dealing with the issue of having sickle cell anemia. Attending the club meetings that we had back then helped because it was an opportunity of meeting people with the same challenge as me and learning how they are dealing with it; there was this comfort that came from the knowledge that I was not alone.
I was able to come to terms with my situation when I understood that God loves and accepts just as I am, I didn’t have to change or become healthier for him to love me. On my own I couldn’t have dealt with the condition, I still lack words to describe the pains, the depression that sets in during and after crisis; the urge to give up living at times in the midst of the pains; the guilt of falling ill one time too many but a combination of some factors has helped me thus far and will keep me in years to come; most importantly the God factor, the family factor and the friendship factor, all these combined with the services of the medical personnel have been my mainstay.
I will like to say here that the staff of hematology department University of Nigeria Teaching Hospital (UNTH) are among some of the finest members of the medical community, from the doctors to the least person in the department. Nothing compares to having a doctor who understands or even feels your pain, at UNTH hematology department, they do. Being knowledgeable about sickle cell disease really helped my parents to be able to take care of me while growing up because they had a fair knowledge of the condition, they knew what to do and when to do it. Likewise the knowledge I have obtained about this health challenge has helped me in how I manage and care for myself.
Staying positive during crisis is important, in fact it is very critical. Coming out of that episode of pain unscathed emotionally, psychologically and otherwise takes a lot of determination. It is so easy to get discouraged in life and wish for death when you face situations that are challenging not to talk of when you have to deal with an issue you never bargained for, which you wouldn’t even have agreed to in the first place. I have learnt to play the hand that life has given me and I aim to play it very well. The late pastor Bimbo Odukoya once said when life gives you a lemon, make lemonade out of it. One of the things I had to deal with during crisis was discouragement in the severest form; at this point one actually gets to the thin line between life and death. You begin to wonder the point of living if it’s filled with pain (this was my cousin’s last statement before his death), at such times I find myself asking what the point is? Why live? What do I have to live for? One person that answers these questions for me is God. Having God in my life gives it a meaning. I discovered that the essence of life; finding fulfillment in life lies in being a blessing to others. I am able to handle life better when it is focused out on others and not solely on my person.
The love and support of my family is another thing that has kept me going, in my fourth year in the university, I had a crisis episode that was very bad; I came to a point where I was convinced that death was imminent. I was weak and tired of the whole thing, I went over my life, I remember asking myself what I was living for. Should I stay or go? What have I achieved and all that. As I was thinking of all these, I thought of my dad, my mum, my siblings, of how far we’ve come in this fight for survival, I just encouraged myself and endured the pain; am still here today and will still be around, God willing and He does. My parents taught me to be independent, to do things for myself; they guided me in a career path that required mostly mental effort and less of physical effort; so that should I leave home and stayed on my own, or in the event of the inevitable, I could cope.
Things I observed when I started interacting with people of the same condition were that some didn’t have the familial support I enjoyed; they were considered a curse because of the toll their health had taken on the family’s finances. You can imagine what it feels like to be called onwu-death, by the ones who are meant to love and protect you. Some are resentful towards their parents saying they are the cause of their problems; there are feelings of guilt amongst parents and the children alike. Quite a number of us are without skill and thus lacking the means of sustenance, therefore in need of empowerment.
Developing a healthy self esteem, being optimistic about life- choosing to live each day, avoiding self-pity; having set goals, targets and projects also helps to give one something to look forward. Also it’s the mindset you have built up when strong that will help you come through when weak or in crisis.
One of the blessings I have enjoyed in life has been the gift of friendship, I have a lot of friends, they are all aware of my health status. My friends add color and flavor to my life, when it gets that bad, I always have someone to talk to. Life would have been very boring if I didn’t have them around, nevertheless I know my limits. Being aware of my health challenge helped them in being sensitive to my needs, they know I can’t handle a lot of stress or anything that would lead to physical exertion, and as much as possible they help me take care of things that require a lot of strain and when I fall ill, am scarcely in want of attention.
I look back and I discover that it has not been bad after all; it has not been rosy either but it is better than not living. Do you know that with advancement in medical science you can actually determine the genotype of your baby while still in the womb-amniocentesis? At times I wonder, in this age of quick fix, what if my mother had aborted me on knowing I was going to have sickle cell disease or what if they had the knowledge we have now about sickle cell disease and chose not to marry? What would have happened? It meant I would not have existed and I would not have had a chance at living; painful though it might have been but it has been a good life. Life can be beautiful, yes, beautiful with double L even with sickle cell disease. CHOOSE LIFE, IT’S WORTH LIVING.
HAPPY WORLD SICKLE CELL DAY!