Sickle Cell Disease: Some Bitter Sweet Memories

19 June has been chosen to celebrate the Sickle Cell Day. Sickle Cell Disease affects many people in sub-Saharan Africa, but research into its management and cure is grossly underfunded.

World Sickle Cell Day

Lillian

Lillian passed when I was 10 years old. She might have been a year or two older. It was my first year in secondary school and my first time of becoming acquainted with what ailed her. Days before she passed, Lillian came to school very early in the morning after being absent from classes for an extended period. She dropped her bag on her desk and walked towards where I was seated.

“Chika, could you please massage my elbows?”

I set to work after Lillian showed me how she wanted it done; palm straightened out and rubbed up and down her upturned elbows.  As we talked, pupils shaped and colored like ripe palm nut, set in the yellow fluid that is her sclera looked on as my rough palms tried to carefully rub her delicate skin. When her elbow appeared to hurt much from the massage, Lillian’s yellow palms grabbed on to the desk. But she never asked that I take it easy. Her silence was that of someone used to pain, pain that made no sense, pain that must be endured, pain that meant being alive.  I was split between rubbing hard and not so hard, I wanted to rub hard, so hard as to rub away the pain and the disease from Lillian forever, but a look at her protruding spleen and belly reminded me of the fragility of my classmate.

A cane wielding teacher entered the classroom and asked why we were not lined up at the assembly ground with our mates.

“Lillian is not feeling too well and asked that I massage her elbows,” I paused from my task to explain. The teacher’s eyes rested for one moment on Lillian’s sick little body – the cane, previously raised as he advanced towards us was brought down as he made a hasty exit.

I continued to massage Lillian and to keep her amused. Her perfect dentition would flash out in smiles, but mostly laughter, in response to my jokes.

That was the last interaction I remember having with Lillian. It was beautiful, she was frail but her spirit was very strong, almost as if death was not an option. Days later it was announced by the school authorities that Lillian had passed on from complications of sickle cell disease.

World Sickle Cell2

Chidi

In June 2014, about three months before Chidi passed, she wrote an article to commemorate World Sickle Day. It was a deeply personal piece and she felt quite vulnerable about putting so much of herself out there. Before sending the article out to publishers, Chidi sent the article to me, asking to know my thoughts about how much of herself she revealed in the piece. I called her to talk.

“I feel as if I have written everything there is to write about my life as one suffering from sickle cell disease,” Chidi said after exchange of pleasantries. “I worry that I will have nothing to write during next year’s World Sickle Cell day.”

I found myself telling her not to worry about that, that next year, what she will write will come to her, that the most important thing is that she has written what she feels she should write about at that time.

“But I hope I have not shared too much,” she sounded perturbed.

“Do you feel as if you have shared too much?”  I inquired.

“Not really, but I am not really sure how it will come across to people.”

I told her of my convictions that our often unfounded fear of others in Africa is a huge reason why we are not yet where we should be as a people. The truth sets free, I reminded my friend. “If you think what you have shared will help someone else live a better life and you feel you needed to share it, that is what matters most. People will always be people, we have little control over them.”

With that conversation, Chidi gave me permission to send out her article to the news media. Her article was published and got very good feedback from readers.

Chidi brought life all around her. The sincerity of Chidi’s spirit and her love for people consistently shone through her countenance. Despite her health condition, Chidi studied to become a medical personnel and practiced in one of Nigeria’s teaching hospitals, while also acting as the president of a chapter of Nigeria’s Sickle Cell Club.  Chidi’s last written piece is more of a testament to having lived a life filled with joy and love that arose from her faith in God, love from family and friends, but no doubt punctuated with pain and tears.

Sickle Cell End it now
Courtesy of The Heart of Gold Sickle Cell Foundation of Northern Va.

Nkechi

It still hurts so much to write about Nkechi. From being acquaintances, fate had us share the same room over a period of four months where her quiet self-assurance and confidence drew me to her. For Nkechi, unconditional love and respect for self and others lay at the very core of her being. She hardly mentioned her ill-health and did not want to bear that as a label. I marveled privately as she explored life possibilities and options like every other healthy woman would.

Young at heart and in looks, it took me a long time to realize that Nkechi was not my age mate. She easily made friends across age, faith, ethnic and gender lines. A human being in Nkechi’s eyes is exactly that, a unique individual who should be seen as such, one person at a time. Her faith in a good and loving God in whose image and likeness she was created brought so much goodness out of her, such that her illness seemed irrelevant to the beauty and abundant possibilities life offered.

I really thought Nkechi had beat sickle cell disease. I looked forward to a lifetime of friendship, of growing old together, after all, had she not lived well above 35 years and was her crisis not much reduced in frequency.

About three weeks before her transition, I spoke with Nkechi on the phone. She was moving her clothing and fashion business to a new location, she told me excitedly. She only needed to follow up with the interior designer to get the place ready. I looked forward to the day I will be in Nigeria and travel to Abuja to see her new shop. I had smiled at the thought of what she did the last time I visited her business location. Without asking, Nkechi had ordered banana and groundnuts and when the order arrived, she joked that there was no need to ask if I wanted my favorite snack.

I count myself extremely blessed to have encountered Lilian, Chidi and Nkechi in my lifetime, but how I wish they were all still here. I do not take my good health, or that of any other healthy human being for granted. I am also hopeful that a complete and available cure will soon be found for sickle cell disease. But before then, let us keep creating awareness of the disease for whatever it is worth. A wise decision can save someone years of avoidable pains and tears.

Chika’s twitter handle is @chikaforafrica and you may follow her on facebook at www.facebook.com/chikaforafrica

Except otherwise stated, all articles published on this website are the intellectual property of Chika Ezeanya and are protected under the Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. All republications must ensure that contents are not in any manner remodified without the express approval of Chika Ezeanya.

 

2 thoughts on “Sickle Cell Disease: Some Bitter Sweet Memories

  1. This article is very touching, Dr. Ezeanya.

    What you have done is to lift this disease to a personal level. As I read it, I also recalled people I have known who have died of Sickle Cell disease. What is striking and frustrating at the same time is that the victims are often too young. I then ask myself: “Could it have been avoided?” knowing all we do know about carriers and the risks involved in having children with the disease? How can science and medicine help to reduce the risk of having a child with the disease or to manage it so that life can be extended?” These are all the questions that go through my mind as I read your article, which I hope will help to give the disease more visibility.

    I have not seen any studies that discuss the possible socio-economic effects of the disease on the development of people of African origin. A lot of concern has been expressed regarding the socio-economic effects of the crisis caused by the Ebola Virus Disease on Liberia, Guinea and Sierra Leone. With regards to Sickle Cell Disease,do we know its effect on Africa’s development? African countries, maybe through the OAU, should be looking at getting some answers if no information exists.

    With best regards.

    Michael.

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