When I was born, Ma says I was small, dark and light in weight, just like Irene. The girl I was born after.. Ma says she thought I was a special child just like her Irene. Irene was special all through, she was born with her amniotic sac filled with water. It is good omen among the Luo, so they named her a Luo derivative for “child of the rains.”
Irene was a frail little child, with tiny sinewy arms and brittle feet. Her big round eyes were beautiful and bright. Hey hair; thin and brownish against her dark complexion. She was playful and jolly. Talkative and adorable. Her very existence lit up neighbourhood. Irene was like a flower whose petals brightened the prospects of neighbourhood. Perhaps it was the spring in her steps that captivated the hearts of older people. Perhaps that mischievous smile she brandished. Her mother was instantly named Mama Irene for everyone knew Irene.
That was before something deemed unnatural begun eating at the little girl. First she lost the brightness in her eyes, they turned pale then yellow. Then her springy step slumped, she adopted a slow painful gait. The whispers made rounds.
“Sorcery! She’s certainly been bewitched.”
It started with mild complaints of body weakness and disinterest in active chores. The hitherto playful Irene was now self absorbed and withdrawn.
Ma says Irene first complained of joint and abdominal pain on an evening in the 1990’s. But those complaints were not strange to Ma. She’d noticed something peculiar about Irene. She always was frail, taking unusually longer to grow in size.
Everytime we went to the hospital for immunisation. My Irene tugged along, she was often examined and transfused with blood. We met the same doctor who always examined Irene and suggested blood transfusion. The doctor said it was supposed to strengthen her, he said that Irene lacked enough red blood cells. That she needed to constantly add blood into her system if she was to avert the fatigue and the bouts of pain in the joints and the susceptibility to attacks fever and infectious illnesses.
“Ma, my legs hurt.” whined Irene.
“Where exactly?” Ma asked, stirring porridge on the charcoal stove.
“Here!” Irene replied, pointing to her knee joints and chest and bones.
“Perhaps, you over stand during those school assemblies!” Ma volunteered.
” But why is it only me that complains of the pain yet, we all stand.”
This was a typical evening in our household.
My sister often complained of body pain and general weakness. She was frail and occasionally sickly. I thought she was pampered because she was the last girl child. A darling in my parents’ eyes.
I and my sister didn’t exactly know why Ma was very bitter with me when I claimed my joints hurt just like my sister’s.
She sternly reprimanded me for faking illness.
“You keep faking illness, do you think it’s a joke. It’s not funny, you are summoning ill health upon yourself.” Ma spat.
I was reduced to a grumbling wreck. I was only claiming I wasn’t well. Why Ma bitterly reprimanded me, I never entirely understood.
For reasons unbeknown to me and Irene. My parents had taken my sister to Nsambya Hospital, Kampala, following her various attacks. Their fears were confirmed though they didn’t show it. The only sign of trouble was the occasional late night discussion in hushed tones. And the unexplained visit to the clinic of all of us.
I got to know when I was older that Irene was a sickler. This discovery confused me as terribly as it troubled me. I found medical documents carefully tucked away under the family photo albums. The documents said all I needed to know.
My hands shook whilst my eyes scanned them. I immediately regretted the siblings fights we often had with Irene.
I was ignorant like any other about sickle cell anaemia, I thought it was a death sentence.
The blend of curiosity and fear ignited my interest in knowing more about the disease, sneaking to my treasure trove to read about sickle cell. I then understood why Ma was bitter when I faked joint pains. I understood why my parents were overly responsive to Irene’s concerns. I learnt that the occasional cries were a result of painful periods called crises. I understood why my sister was always swallowing immunity boosters. I understood why she was a special child. If there’s something I didn’t understand though was why no one told me. Yes I was young and naive but I believe I had the right to know, I believe I should have been told. I couldn’t ask questions because I’d found the information wrongly.
See, there’s so much ignorance about sicklers and sickle cell anaemia. The majority of the information is based on shallow rumours and scanty falsehoods and half truths.
I however understood everything when my primary school science teacher branded sickle cell an infant killer disease. He said most kids with sickle cell never made it past 15 and at most 20 years. I smelt the odour of stigma. It was too pungent.
My sister has survived. She’s 3 years older than I. I made 23 in September. My sister is healthy. My sister like all other sicklers thrive on the mercies of blood donors. The blood bank is the refugee point of all sicklers. Donation of blood, simple as it seems is akin to refilling the elixir of life.
Have I ever felt betrayed by God? No. Have I found a woman stronger than my Irene? No. Last year she graduated and this year she got a job. Deep down, we are safe because we know we can always find redemption in blood banks. We know we can create awareness and avert the stigma, we can end the trauma children less lucky than Irene go through. Sickle Cell anaemia isn’t a death sentence, it’s an opportunity to live. Sicklers aren’t disabled, they are only differently-abled.