The heat of the auditorium made my head ring and my dress felt like it was gripping tightly onto my skin. Around me were black folk, littered in every corner of the church auditorium, their bodies pressed closely together. From afar, their bodies seemed to blend, making it hard to tell just how many people sat in each pew. It was not unusual at this time of year to have a sudden influx of new faces. The Sunday before Christmas, we celebrated Thanksgiving, where families wore matching ankara and lace, and the children danced in front of the entire church, their bodies sticky with sweat as they made moves that matched the deafening sound of the drums. Beside me, my grandmother was dancing, hips swaying to the rhythms of the talking drum, her smile wide enough to expose the stark contrast between her pearl-white teeth and the dark opening between them.
I wanted to dance too: free my limbs; take off my shoes and place them underneath the pew in front of me; join the raucous congregation, their voices gradually rising above the instruments as they sang, come and join me, sing hallelujah . But I was fifteen years old, an awkward teenage girl, and my body felt like an alien shell. I was about to leave the auditorium and head to the bathroom—a last-ditch attempt to remove myself from the noisy congregation that resembled a bustling marketplace—when the pastor instructed the band to stop. He looked towards the church and announced that it was time for communion, and my grandmother grabbed my arm. There was no escape.
A deacon handed me a little plastic cup containing fruit wine. On top was a thin wafer of bread, the sign of the cross imprinted in the middle. “Dip the bread in the wine and place the communion on your eyes,” my grandmother said. “If you really believe, if you really pray and cry out, then God will heal you.”
I sighed, took a deep breath as my insides coiled from shame, and did as I was told. The words came out as a breathy whisper: pretty women wonder where my secrets lies . Maya Angelou comforted me as I placed wafers soaked in wine over my eyelids, a corner of my heart still aching for a miracle. I had done this many times and each time, there was no result. I had stopped believing that God could even work miracles. But that Sunday, my bones became feeble, as if the very thing that held them together had dissipated, and I asked God for a miracle.
For a huge part of my childhood, I felt like I was a piece of clockwork waiting to be fixed. The feelings started early, with the numerous appointments to eye specialists with my mother, trying to see if there was a way to cure my dancing eyes. “It is incurable,” the doctor would say, and when we got home my mother would wail, even though that doctor, like many other doctors, only confirmed what she was told when I was born on that rainy Thursday in 1998.
I was born with congenital idiopathic nystagmus. The American Nystagmus Network defines nystagmus as a “complex condition where the eyes move involuntarily in a small, repeated back and forth motion,” making it hard to see clearly. Nystagmus is believed to affect between 1 in 1,000 and 1 in 2,000 people . Nystagmus affects people in different ways, but it does lead to reduced vision. It can be caused by “a problem with the way the eye sends messages back to the brain or how certain parts of the brain make sense of this information.” Sometimes, it is linked to other inherited neurological conditions, or other health problems like albinism or Down’s syndrome. On some occasions, like mine , it can be entirely random.
When I was in first grade, a boy at school called me a witch because I could not make my eyes swivel to the left when he asked me to. I went to the bathroom, sat on the toilet seat and cried, tears soaking my yellow school uniform shirt, only stopping to breathe or listen to the soft whistling of the wind between the trees. That was the moment in which I learnt that there was something permanently wrong with me. I was not a piece of clockwork waiting to be fixed. I had lost too many pieces and would never be fixed.
At home, conversations about my nystagmus were sparse, except when discussed as a thing that God would “deliver me” from. I received conflicting messages: God does not make mistakes; everything God created was perfect; God corrected the things that were imperfect. With these messages, my nystagmus became a huge source of shame. I was praying a lot, asking God to heal me so that I could have some sort of normality. When it looked like healing was not going to happen, I worked on compromises instead. I wanted to know what it was like to be able to see clearly for one day, to not trip up the stairs because I missed a step. When that didn’t happen, I asked for less time: twelve hours, thirty minutes, ten seconds. None of my prayers were answered.
In 2012, an ophthalmologist at a hospital in Oxford, England asked if I’d considered registering as partially sighted. I was stunned. The implication—the idea that I could have a disability—was so momentous that I didn’t say anything for a while. I was learning to navigate the world as a young black woman, and I did not feel I had the right to claim a disability. For fourteen years, my nystagmus was a thing I was waiting to be healed from, while I also knew deep down that it was a permanent state. When you are waiting to be healed, you reject a lasting condition; the idea that I could be disabled felt like I was ignoring the magic of an all-powerful God and settling for less—the conclusions of mere mortals.
Saying that I had a disability felt like I was adding ink to a penciled truth. The label “disabled” was not one that I felt I could claim as my own, it was not rightfully mine. I had grown up surrounded by people that undermined the severity of my disability, and so for me to claim the label, when I didn’t feel “disabled enough,” felt disingenuous. I was black, female, young, Nigerian, Brit ish , but I was not disabled. Claiming that label felt like lauding myself with an extra, unnecessary burden.
It took me a few moments before I managed to pull myself together, and told him I would talk to my mom. On the way back to school, I called my ma, and told her what the doctor had said.
“He wants me to register as partially-sighted.” There was silence, and then my mother hung up. We never brought it up again.
When I stepped onto the train platform in Bath, England, all I felt was dread and fear. The fear I felt was so raw, it seemed to scratch at the surface of my skin and uncover the truth that lay underneath. Bath was mysteriously quiet. It was too early on a Saturday morning, and I could almost taste the freshness of the air against my lips. The sky was a translucent blue, and the clouds seemed to stretch on for perpetuity. It was roughly a month after my seventeenth birthday and the first time I had gone anywhere on my own. I was nearing adulthood, and it felt important for me to try and confront my fears of being independent.
Now, I knew the truth. I was a disabled black girl. The truth, for many years, sat at the entrance of my throat—a lump so large that I could only start breathing and living in my body when I was finally able to swallow and accept it. That unusually warm English summer, I sat in a café in Bath, alone. I had gone there on my own. I had asked for help when I was lost, and when the person started pointing to things I could not see, I did not nod and pretend I understood. I said, “I have a visual disability,” proclaiming what had been the truth since the day I was born.
That unusually warm English summer, I knew that the most important thing I had to learn—before I turned eighteen in June the next year—was not be ashamed of who I was. The embarrassment I felt every time I missed a step, every time a friend pulled me back because I hadn’t seen a car coming, was a thing I had to let go. I had to practice forgiving myself.
I took a deep breath and—alongside the oxygen and the carbon dioxide—I exhaled tidbits of the intense shame and fear that I had carried as an extra weight on my backbone. It was not huge, a trip to Bath, but it was important because throughout my teenage years, I had never been given the opportunity to learn to live with my disability and move through the world on my own terms. Everybody else around me was scared that something bad would happen. But nothing had happened, and I felt like a winner, sitting in that café and staring into the green park of nothingness.
I’ve been living in London for just over two weeks. The city is vast and the people walk too quickly. You can only hear the birds if you wake up early enough, that time of the day where the sky still seems to exist as an in-between morning and night, and it’s unclear exactly what time it is. This is how it is on Sunday mornings, when I am walking to church and the very city which never stops moving seems to pause a bit. When I walk into that church service, I am not the believer that I used to be. I sing over the sound of the drums, and I smile when I see other children in the congregation dancing with too much energy. I come to church happy in the body I exist in; I come to church knowing that I am not a mistake waiting to be fixed. I do not come to church with a heart that is begging for the most special part of me to change. I come to church happy and whole. I come to church free.