Body & Health

Living With Sickle Cell Disease : A Young Woman's Memoir.


It took his death to make me realize what he gave me.  He was my best friend, my confidant.  Far away in a strange land, he built on the foundation of faith he already had.  Despite the high cost of calling, I always wanted to talk to him and this I did diligently; not because I didnt have what to do with money but because I felt I had so much to learn from him with such short time.  Little did I know that the time I thought I had to learn from him would be shorter than I had imagined.  He was younger but he showed me how to reason positively even in the midst of so much negativity.  He taught me to be bold and to speak out; from him, I learnt the essence of humanity.

I lost my brother late last year; brief life he lived but full of fame for the lives he impacted with all the positive things he did.  I asked myself if I could be like him, live like him and get to use my talents to impact lives like he did.  Despite his pains, he made great use of his talents; something I have not been able to bring myself to do due to my so-called constraints.  Today as I pick up my pen, I mourn the demise of, not just my brother, but my confidant and best friend; I also celebrate a life so well lived.

My life, I can say is a mixture of pleasure and pain.  I noticed at an early age that I had always felt depressed and timid so I decided to study and understand myself.  I learnt my situation was genotypic.  So many things in life bring one stigma and being born with the Sickle Cell disease, I learned to live my life being overly conscious of everything I did and became completely withdrawn from everyone; I built a world for myself.  I cared so much about what people thought of me and gave maximum attention to odd questions they asked like “ why do have yellow eyes or why do you have such tiny fingers?”. I remember quite well in the past years of my life, I would breakdown and cry so much when these questions were asked.

Because of the seeming fear for brevity of life in people living with the Sickle Cell disease, most families, especially mothers, become antagonistic when their sons or daughters date or want to marry persons with this disease.  This was my case for so long.  Even after we did medical examinations to be sure we were compatible, I lost great relationships that I thought had bright futures due to antagonistic pressures from the guy’s family.  One was very recent with a medical practitioner who strongly believed we could make it work despite pressures from his family; but on my path, it was difficult to go into a family where everyone was totally against you as wife; so I had to put away sentiments and stop the relationship for my own good.

As I grew older, my confidence level grew.  My brother taught me to build my self esteem by always pumping great words into my life.  He made me see myself in a different light.  He told me often that I am what I imagine I am and so urged me to imagine only positive things about myself. I have composed so many songs which I never had the boldness to produce.  He always told me I could do it.  Now I am working on them because I have faith in myself.  So when I am asked those questions I used to feel embarrassed about, I simply see it as another opportunity to educate people about the disease I live with, how it can be avoided and how it can be managed.  I no longer see it as embarrassing.

I often tell myself, especially during my past crisis, that nothing has more power over me other than that which I give it through my conscious imagination; I learned this from my late brother.  I have not had crisis in such long while.  I stayed the past years without visiting the hospital.  I know it’s the power of He who created me, working with my new world of self esteem and positive mentality about myself that  I can do it and I can make it. In my life, I have learned to speak out loud, I am bold and I believe constantly in the creator of life in me.

Through the stigma society seemingly associates with this disease, I believe people living with this disease should find what gives them hope, and develop an inner strength by building a positive angle for themselves, avoiding any form of self pity and rather take any opportunity they have to educate the society on how this can be avoided.  As I write, I wish that people in the society, colleagues, spouses, friends, family, all who read this piece would also help fight against the seeming stigma this disease may bring. Let us show some more love to, and, be patient with those we know, we see who have this disease knowing that with complicated situations like these, emotions especially can never be predicted. As families and friends, let us be committed to them in the little way we can; trying to understand what they go through. We can help build their faith in life and what it can offer them.

Writer : Enigma

Photocredit: gettyimages

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