“I don’t want to inflict the burden of my Sickle-cell disease on an innocent young bride,” my little brother once told me. However, as an Igbo man, the pressure to carry on the family name ultimately proved too much to withstand.
I’m still unable to shake the memory of one crisis I witnessed a half-century after.
I’m 10 and he’s eight-and-half. The Nigeria-Biafra War is raging and my family has evacuated to our ancestral village in the jungle of Nnewi with neither pipe-borne water nor hospital. It’s a bright, clear Sunday afternoon: we’ve just returned from Mass in the neighbouring village; the air smells of eucalyptus and we’re playing war with our cousins. Chike says, “I feel dizzy.” I touch his forehead; it feels as if he’s on fire; Mama gives him Panadol and he topples into bed. Night falls. When I go to wake him up for dinner, I find him folded over in agony, moaning and contorting. I approach his bed and touch his body; he’s baking with high fever. I ask him if I can bring his food to him. He whimpers my name: “Mayelum…Mayelum….” Yes, I’m here, I say, how can I help ease your pain? He groans louder. I want to scream, ‘That’s not fair!’ But instead I hold his hand; he clasps it and my fingers tingle. If only I can absorb some of his pain and lessen his agony. That night, before I sleep, I appeal to God. If He’d cure my brother, I vow, I’d never lie or steal roasted palm nuts from the blind widow next door again.
The next morning, there he lies, eyes open but staring blankly, his fever spikes to 104 degrees. When I say hello, he doesn’t recognize me. He’s delirious; Mama panics. Word goes out across the village that Chike needs a doctor. We wait, knotted with anxiety. The sun sinks. So does our heart. Hours go by. Morning comes and the sun begins to shine; a refugee doctor arrives. “He needs blood transfusion or he’d die,” she pronounces. But all we can do is pray and wait – Mama gathers my siblings to the verandah to say the Rosary, imploring Our Lady to intercede.
Days pass. Chike, still in bed in Mama’s room and hyper-anemic, continues to languish. On March 25, I wish him Happy Birthday but gravely ill, he stares vaguely. He hasn’t had a bowel movement in days. We continue to beseech Our Lady, ardently, hour after hour. He moans through each night. In the daytime, the sleepless night makes me dopy. We take turns much of each day by his bedside fanning him and spend the rest trying to force-feed him and rehydrate him.
Several more days pass. He’s dangerously dehydrated and beginning to reject food. Each day he drops more weight, looking like his own ghost. Chike eats nothing, and his energy dwindles. Periodically he sips water. It is now clear that my little brother might die any moment. A priest arrives to administer extreme unction. We meet every day with dread, awaiting his death even as we plead for a miracle, taking turns going in to check if he has stopped breathing so we can summon the gravedigger. The coffin-maker already has been notified. I say little. Is this it? My siblings are calm but quiet; we sit with our rosary beads, each sibling swimming in grief. In my mother’s anguish, she sends for my dad who’s away at war.
Hours pass, each second tremulous with tragedy. It’s again my turn to go check on him. The room is pitch black; as silent as mud; I call his name, no response. I’m afraid to touch him—to verify that Chike’s indeed dead. I breathe air in, I breathe air out; I cross myself and approach him. His eyes are shut, his breathing faint but sure. It will remain so for a few more days. And my family will remain on bended knee hoping for the impossible while expecting the worst. Sometimes I’d ask God to just take him and end his suffering. Chukwu abioma, chukwu onye ebere…(Compassionate Lord, Merciful Lord…)
Then Papa arrives. As the boss of Uli Airport—Biafra’s sole tie with the rest of the world—he brings badly-needed bottles of Lucozade and folic acid among other rations from Caritas. He spends the better part of an hour with Chike alone. And then he has to report back to duty. A deeply religious man, before he departs, Papa tells us that henceforth we should only say “Thy will be done, O Lord;” that we must accept it because “In God’s will is our peace.” He doesn’t expect to see Chike again.
That evening, a stocky barefoot old man clad in grey loincloth and slinging a raffia bag across his bare chest pushes open our wrought-iron gate and saunters into our compound. He has a shock of white afro, full forehead and piercing black eyes. He clears his throat with a hawk that can be heard in the next village. Hagridden kids scatter like scared rabbits, the compound noiseless as death. “Take me to this child I hear is sick,” is what I think the shaman says as he retrieves an enema pump from his bag. And that’s all it seems to take. Five, perhaps ten minutes pass and we notice a stomach-turning reek floating from Mama’s room, now a festival of rapid-fire faeces. Suddenly Chike is lucid. Jesus wept. My siblings and I stand together, bawling…mighty grateful to that “wizard” of a witch doctor.
The morning dawns to find Chike’s fever break and Chike begins to rally. He downs a bottle of Lucozade; says he’s famished. It’s the first food to cross his lips in more than a week. He still can’t feed himself. So I sit, helping him. In the coming days, he slowly begins to regain his energy.
One day in early April, Chike’s dozing in the verandah. The air smells of evergreens, the wide sky’s bathed in the brilliance of the sun. He’s wearing my father’s army fatigue with the Biafran flag stitched on front. His eyes open when I walk in to check on him. A straying brown pregnant she-goat is gunning for the leftover yam porridge on Chike’s plate. “Let’s play scrabble,” Chike says, eager to get back in harness. At that moment I know he’s turned the corner. If only the war would end.
The war ended soon after. But the hardships of worse sickle-cell crises would continue. So much worse that I’d sometimes pray for God to take his life. So I understood why Chike would rather have remained a bachelor for life: the daily swallowing of pills; chronic pains and painkillers; several ER visits and prolonged hospitalizations, progressive organ damage, blood transfusions and incontinence that hurt his dignity. What man would want his young wife to witness such agony? Like the crisis on his wedding night and the attendant tainted blood transfusion that will not only deprive him of his self-respect and sense of self-worth, but also leave two more damaged lives in its wake. And the stigma attached to the disease will ultimately kill him faster than the disease.
Bittersweet though it may be, I was heartened to learn that experimental gene therapy is finally helping several SCD patients. A formidable achievement, unthinkable 25 years ago when Chike—an acclaimed Nigerian journalist at the height of his career—died at age thirty-five. There’s more research to be done. It’s no secret that adequate funding has been withheld from SCD simply because it’s considered a “black disease” affecting people of African ancestry. There are some 100,000 SDC patients in the US; some 300,000 SCD births each year, a figure projected to reach 400,000 by 2050. In Sub-Sahara Africa, only 30% of SCD children live to adulthood. One way to prove that black lives matter is to reverse this funding disparity in order to advance this research. Also providing healthcare for all would grant many SCD patients access to this therapy. But the best defense against SCD remains education in the black communities about the importance of genotype testing prior to marriage. In addition, raising public awareness of SCD should remove the stigma attached to the disorder.
May Akabogu-Collins is a university professor of economics as well as a freelance writer. This essay is an excerpt from her soon-to-be-published memoir.