The storm clouds are brewing,
I can sense what’s to come, my body gets tense
I do all I can to put the transformation in reverse
It’s too late the change has began
I am no longer me, I am no longer the same,
Here comes the rain,
I put my music on blast….
And hope it drowns out the pain.
How long will it be this time before I return?
A week, a day, or maybe some hours?
It doesn’t really matter,
Either way I will be drained with no more power.
There’s people around, which I must say is a plus.
Until they try to act like they know what’s going on within.
Explaining that they’re clueless will just cause a fuss.
As a result, I just reel my true emotions in.
This is my world and a burden I carry alone,
A world in which I have no company but my own.
I guess I could tell myself its meant to be this way,
No matter how I try there are somethings I can’t change,
I was born this way,
And this is the price I must pay.
I suppose I’ll pull through,
That prayer always comes true,
But no matter how hard I try, this is one curse I cannot undo.
After the storm comes the calm,
And once again I’m myself,
I’m liberated, and all its evil cards have been dealt,
I kicked its ass and live to fight another day
One thing I will say-
Is that it’s all over and the hurt is gone.
I wouldn’t want to be anybody else.
It may be hard but I’ll continue to win this fight all on my own.
The poem is about Chichi’s personal struggle with Sickle cell disease from 19/09/1991-12/02/2018.
Sickle cell disease (SCD)is an inherited blood disorder where the red blood cells contort into a sickle shape. The cells die early, leaving a shortage of healthy red blood cells (sickle cell anaemia) and can block blood flow causing pain (sickle cell crises). Infections, pain and fatigue are symptoms of sickle cell disease. Treatments include medication, blood transfusions and in rare cases, a bone-marrow transplant. While treatment can help with the management of the disease and symptoms, this condition cannot be cured. The severity of the disease varies from person to person. People who have sickle cell disease have a reduced life expectancy. Some people with the disease can remain without symptoms for years, while others do not survive beyond infancy or early childhood. New treatments for sickle cell disease are improving life expectancy and quality of life. People with sickle cell disease can survive beyond their 50s with optimal management of the disease.
The Centre for Disease Control and Prevention estimates that SCD affects millions of people worldwide and is particularly common among those with ancestry from sub-Saharan Africa, Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America), Saudi Arabia, India, and Mediterranean countries such as Turkey, Greece, and Italy. In America about 1 in 13 African-American babies are born with sickle cell trait (SCT) and depending on the status of their significant other may pass on SCD to their children.
Despite the health, emotional and economic challenges faced by people who have the disease. Many grow to be talented, compassionate and strong-willed individuals like my sister. Chichi wrote the poem above in 2011, in her 20th year of life, at an age where many fancy themselves invincible, she was already aware of her own mortality. The poem depicts her struggle but more importantly her positive and infectious outlook on life. The poem provides a glimpse of the abundant self-love and confidence that drove her immense will and inspired those around her when they felt lacking or overburdened. Chichi was and is the centre of my world. She is greatly missed by all her family and friends.
Rest well little warrior, sometimes just to live is an act of courage. You made all who knew you incredibly proud.
Featured image– Sickle cells |Graham Beards | wikimedia commons
The views and opinions expressed in this article are those of the author and do not necessarily reflect the views of The Best of Africa.
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