DEAR SICKLE CELL SURVIVOR OR A WARRIOR IN SEARCH OF SOLACE.
Benie Siegel once said that being a survivor doesn't mean being strong - it's telling people when you need a meal or a ride, company, whatever. It's paying attention to heart wisdom, feelings, not living a role, but having a unique, authentic life, having something to contribute, finding time to love and laugh. All these things are qualities of survivors.
Interestingly, the truth is, nobody looks good in their darkest hour. Nobody enjoys being down, being depressed, being sick, watching the drugs sitting beside him or her, nobody wants to be a victim of circumstances but it's those hours that make us what/who we are. We stand strong and intentional about everything or we cower. We triumph or emerge victorious, tempered by our trials, or fractured by a permanent damning fault line of what has happened to us in those hours of agony. This is the part in which we know we are human beings and problems are part of what being humans stand for and we face the these problems or sicknesses the way they come.
However, living with Sickle cell is difficult and dying as a fighter is boring. Sometimes you don't want to go back to those Antimetabolites, Opiold Analgesic, Tricyclic antidepressant or the Antiemetics right there on the table. You are tired of holding on, tired of being carried from one hospital to another, tired of the Doctor looking into your eyes, face and mouth; you are tired of stressing your parents. You are tired of everything happening around you but you can't take your own life by yourself. What do you do? You still hold on.
In fact, love always come in disguise with the pains hidden in your pride. When you say to them that they can't understand the kind of person you are through the scars that are left on you, they doubt you. They doubt the feeling that comes with living in the body of your existence. They doubt the feeling that stays with many of your pains every day but you always wish to stay healthy just like other children, free from pains of sickle cell! Free from going to the hospital every now and then; free from everything else that weigh you down. In your heart, you long to stay without the Doctor's needle piercing into your skin and the smell of drugs in the hospital bed. You try to wipe your tears. You ache to live a little longer despite the agony and the torture your body poison your spirit with but this ailment is ripping you off. You blame your parents for bringing you into this world as AS's and your parents blame you for coming, for always answering their calls.
In a very defining context Vera Nazarian said that If you are faced with a mountain, you have several options. You can climb it and cross to the other side. You can go around it. You can dig under it. You can fly over it. You can blow it up. You can ignore it and pretend it’s not there. You can turn around and go back the way you came. Or you can stay on the mountain and make it your home. Your body may be a burden to you, your health may be a system that governs itself. You can always remember to bring yourself down to understand life the way they said it comes.
Likewise, they may called you a Warrior, a Fighter, a mistake or perhaps a product of experiments but when you feel the heart beats of those people who brought you into the world, you feel like telling them how heartless their kind of love was, how selfish it was to have brought you into this daily tears and memories between you and the past, then your future is closer to doom, uncertain.
Moreover, life is like a whirlwind and it moves desperately in different directions and you may not understand what living means. It does not always come from a direction that works with your initiatives. You should be intentional about many things. You should be intentional about looking at the sun every afternoon or in the evening whenever the sun is making its gradual journey back to its abode. So therefore, still keep keeping on while the sun is still in its brightness. I may not tell you many things my mother told me about the brightness of the sun, i may not remember them because looking at the sun itself, I learned to know the world in different forms like mothers whose smiles are gold.
Meanwhile, those days you wake up and it feels like your body is a complete stranger to you. Crisis of your own existence hurt you, I will urge that you don't give up on yourself. This is our life, Endless Searches that go on forever. Endless meaning that never ends so soon. You should try to carry your body till you find it easy to carry and hold onto its burdens.
Finally, most people live in fear of some terrible event changing their lives, the death of a loved one or a serious illness. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You survive. You adapt, and your life changes, but in the end you go on, with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living like normal human that you are. Find solace, find hope, find what makes you feel alright and never let go of it; it is life after all that dictates the tunes of our dance steps not humans. Be intentional about your fight.
©John Chizoba Vincents
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