Champions reserve songs of victory for the wake of history. You and I know a host of them– Nelson Mandela saw the end of Apartheid in South Africa, Mary Slessor ended the infanticide of twins among the Ibibios– we join in their celebration; we supply the refrains for their songs. Sometimes, we amplify their music.
But there are no drums heralding victory in my battle… hmm…except warriors have other landmark achievements apart from winning this battle, like Tosyn Bucknor who held the sword in one hand and the microphone in the other. She was celebrated, not because she had the ultimate win of this battle, but because she held the microphone skillfully. The champions of the battle I fight never celebrate; they are late. They are never belted; they are shrouded.
Michael secured his ultimate victory at 19, free forever from Vaso-Occlusive Crisis, from attacks of Malaria, from the sickling of the red blood cells, from blood infections, from Leg Ulcer, from Priapism, from Acute Chest Syndrome, from Avascular Necrosis, from the pricks of needles, from doses of Morphine. He didn’t get a medal, rather in mournful mood we gathered. The end of the battle I fight is not decorated like a Christmas tree; the end of the battle I fight has the acrid taste of bile. The champions of the battle I fight surrender the sheath in defeat; they leave the war front for the home front. They are champions, though. Here, we don’t celebrate the ultimate victory; we celebrate each little win while the battle cries still ring.
We celebrate each Vaso-Occlusive crisis that is over, though we have writhed in pain for hours. We celebrate recovery from each Malaria attack, though we have been bed-ridden for days. We celebrate each return from hospital admissions though the bills have mounted. We celebrate being alive, though we often get asked “Why are your eyeballs yellow?
You saw me in that parade, marching like a pregnant goat, and you were laughing while I was celebrating my participation in the parade, free from the bone pain that had held me fettered few days earlier, escaped being screened out of the parade with the “incapable ones”. I celebrate days the symptoms of my Avascular Necrosis stay tame. I celebrate two weeks of not being down with an infection. I celebrate a month without a hospital admission. I celebrate six months without blood transfusion. These are my little wins. They don’t come often, but when they do, I celebrate. Yes, I celebrate. I don’t look forward to my ultimate win, I just want to keep on celebrating my little wins, and celebrate them often.
Did I disgust you four years ago when I sang “God bless my baby girl”, carrying swaddling clothes in my hands, pacing the reception of the Neonatal Unit of Sacred Heart Hospital, and you wondered whether I was sane; whether, indeed, there was a baby in that swaddling cloth? Yes there was, she was the tiniest baby I have ever seen. She weighed only 1 kilogram, but she was a baby. She was! And she is a winner. Ten babies had come and gone before her; and because she came unripe and her life hung on a balance, she underwent a myriad of medical procedures and was nourished the unconventional way, and was kept away from me for several weeks, and a diamond came with the moment I finally got to hold her. She stays because she won and her win is my win, another little win.
So, you tell God you don’t want Paracetamol-induced health. I tell Him I want it anyways – Paracetamol, Paludrine, Hydroxyurea, over-soaked herbal concoction that smells like cow’s dung or the combination of everything. Seasons of fitness for me are like oasis in the desert. They are seasons of wins! They are seasons of celebrations!
I could get a bone marrow transplant and get rid of the disorder in my blood; but I would sell my country first. They say miracles happen, that it is at the Cross and at the Crescent Moon, even in the Rusted Metals at the African Shrine. I read their testimonies in the news. On TV, I see them standing in overly decorated altars before an audience of eager listeners who chorus “God is great”. I tell them that I know another example of miracle. It is to see one’s thirty-fourth birthday and beyond, even with red blood cells the shape of that Crescent Moon.
“Thrombosis”, a word I would later look up in the dictionary, entered my vocabulary stock, not from my many nights at the reading-table, but from my many hospital admissions. I am pricked multiple times as the nurses struggle to find a vein to pass intravenous fluid because blood clots have blocked my veins. And the doctor, his silver-rimmed eye-glasses sitting on his nose, keeps on muttering ‘thrombosis’, ‘thrombosis’. So I lie there writhing in pain from my Vaso-Occlusive Crisis and from the needle pricks, sometimes for an hour, sometimes less, and praying to God that they find the vein. And I celebrate, even in my pain, when they finally find a vein. Nurses join in the celebration when a vein is found in not more than four tries. It’s another little win.
They sing it in my ears that I am the hole in my father’s bag and why my mother is clothed in rag. They say I am the subject of Wole Soyinka and J. P. Clerk’s poem, Abiku. Even yesterday, a professor of Genetics said spending money on me is like loading money in a sachet and throwing it out of a moving car. And I am supposed to walk around with my head bowed or hide my face in shame? And I am supposed to wear my reproach around my neck like a garland?
An optimistic disposition does some trick. When I emit some cheerfulness springing from a heart of positivity, I attract to myself, even built an enduring friendship with a host of people who would otherwise have been repelled by my story and my skinny arms and my yellow eyeballs and my fatless flesh.
I will be the last person to show up at the crucifixion of Prof.; he is only a mouthpiece; he is acting a script that is team-written. Here, the warriors at our battle are not expected to return home and the tell tales of war. Who then wants to sow seeds in a barren land? But you didn’t listen, I was going to tell you about the walls I have scaled and the mountains that I have climbed and the medals I have won, even with my red blood cells the shape of a crescent moon. These are my wins. I celebrate them, and hope that the wind of time will take my song to Prof.’s ears that spending money on me is not a synonym for throwing money out of a moving car.
And when in a crowd, my yellow eyeballs and tiny arms, the ready herald of my story, stay active, and I get those glares that say ‘Oh poor thing’, I return a smile that spreads warmth and says ‘I love me the way I am’. It’s the only way I don’t return home brooding.
Perhaps I’m not mom enough for my daughter, because I don’t have the stamina to throw her in the air and catch her the way you would yours; because I can’t lie on the rug and have her crawl around me; because most times other people take care of her while ill-health keeps me away for days; because family times are as rare as snow in Africa, yet, it’s a win that there is a human being for whom I am Number One, a human being who calls me “Mom”. No painkiller is as potent as her voice when she calls “Mom”. I have been at the threshold of depression, but counting my little wins has helped me to accept myself, to say yes to life, to dare to dream and live the dream; to share the story of my journey living Sickle Cell Disease. When I, at 34, share my story, I say “With my sickled red blood cells, see how far I have come.” I have counted each little win, it has helped me not to give in.
I don’t celebrate my little wins with the popping of champagne, or before a congregation of eager listeners. My celebration finds an expression in laughing louder than you consider normal; in unusually heavy make-up; in voicing my opinion where I am expected to stay mute; in locking my fears away in air-tight containers. Today, it is in sitting up late and penning thoughtful lines, while I find a melody in the chirps of crickets.
Each Little Win by Oladejo Oluyemisi is the winner of the 2020 African Writers Award for Creative Non-Fiction
Read the winning entry for Poetry
Read the winning entry for Drama
Beautiful. Beautiful. I’ve never been able to talk about my health because I’m scared people would think it’s for pity sake. Reading you made me cry and I shared excerpts on my wall in a way of telling my story.
You are strong. And although I don’t know you and may never know you, I will celebrate your win today and tomorrow and everytime that I can. Also, I will begin to celebrate my little wins.
♥️
Awesome article.