By Pauline Luba
Born in May of 2002, I was the last of four children of a housewife and engineer. They were elated to bring another healthy baby into the world – at least for the first five months.
At six months, my mother noticed a peculiar swelling on the lower part of my tiny back. It quickly grew into a huge sac and prompted a rush to the hospital. Following tests, the doctor determined I had spina bifida, a birth defect in which the spine and spinal cord don’t form properly. The National Institutes of Health reports up to 10 of every 1,000 babies have it. An estimated 1,400 children are born with spina bifida annually in Uganda.
Spina bifida is a condition in which a spinal cord fails to develop properly. One of two things happens: 1) a large sac develops; or 2) a deep opening occurs where the spine should be. The types are myelomeningocele, meningocele and occulta.
Myelomeningocele, which is the most serious spina bifida type, has a sack of fluid coming through an opening in the back. Part of the spinal cord and nerves are damaged in this sac. Most people with this type lose feeling in their legs, cannot use the bathroom and are generally faced with disability for life.
Meningocele is just a sac in the back with fluid and no part of the spinal cord. However, it may have some nerves and may lead to minor disabilities in one’s life.
Occulta is best described as where the gap in the spine is so small and underdeveloped that it goes undetected until late childhood or early adulthood. Unlike other types, occulta does not carry any disabilities or issues for the victims. Scientists theorise that it may be caused by genetics or environment but it needs to be studied further.
I have meningocele. I am part of spina
bifida statistics. This, then, is not my full story, but rather a fraction of my obstacles punctuated with frustrations, learning and hope through the encouragement of God and His people.
At age six months, the sac in my back was successfully removed, but nerve damage occurred either from spina bifida or from the surgery itself. My mother blamed the surgeon.
My nerve damage caused issues in my left leg. It became weak and smaller in size than my right. There was a note of paralysis in part of my foot and toes. Doctor visits both in Kenya and Uganda were part of my childhood. Medical professionals said I was spina bifida-free with related or unrelated muscle atrophy best alleviated with exercise and physiotherapy, the latter of which was outside my family budget.
I was often bullied by my peers for being the girl whose legs were “two different sizes.”
Still vivid in my memory is this childhood ridicule. One girl laughed loudly, pointing at my legs each time I stood up and walked to see the timetable at the front of the class. At the library, where students were required to remove shoes to enter, I was mocked again as classmates saw how I had tissue stuffed in mine to help them fit. I can still hear the glee from boys and girls when once I fell from the imbalance of an atrophied leg and even more with kids wrapping index fingers and thumbs around my lower leg to point out the small size.
School-required dresses (vs. pants) for girls made my disability more obvious.
I developed a dislike for being touched, especially on my leg, and often isolated myself from other kids. At home, I cried a lot and sometimes pretended to be sick to avoid school.
This took a toll on me, mentally, emotionally and spiritually.
Teasing and insensitive comments follow me even now as a young adult. Acquaintances and random people ask what happened to my leg. Some have genuine curiosity, whereas others laugh.
I found myself asking God why.
Why do I look different? Why can’t I have equally sized-legs like everybody else? Why am I sick more than others? While I did fake sickness occasionally, other times I was genuinely battling malaria or sinusitis or allergies to the cold.
I felt I was a burden to my family.
Throughout my self-isolation as a child, books were my friends. Books offered a beautiful escape and provided a deeper understanding of many things. When I wasn’t reading, I also started seeing the value in all people, regardless of disability.
One instance of this was in mid 2023, when Uganda Partners assigned me a story on a swimmer living with a disability at the university. Even before the story was written my interest peaked. The student I was meant to interview had lost his leg in an accident at age eight.
Hearing the young man recount his tale of pain, suffering, rejuvenation and finding himself in swimming has stuck with me to this very day. His explanation about how he thought of nothing when he was in the water felt similar to how I thought of nothing when I read. Even though I was interviewing him that day, he took the wheel on teaching me a very important lesson on perspective and achieving what you want – regardless of what they world may think of you.
Now, as a student soon to receive my bachelor’s degree from Uganda Christian University, I can look back to find some silver linings that made me stronger, smarter and more sensitive to the differences of others.
While books were my friends, God was my bigger friend. He was there to catch my tears, answer my questions, and encourage me.
I am today selective about acquaintances, fostering genuine connections and friendships.
One difficult situation I overcame was when I had to stand in front of an assembly at O’ level as a prefect and give a speech in my skirt, trying hard not to think about everyone judging me. To date, I have won speech competitions. To this, I mostly thank my older sisters, who believed in me and encouraged me.
Belief in myself moves me now to set up a non-profit which seeks to raise awareness about spina bifida, fund surgeries of patients, offer aid in their areas and so much more. It goes by the name of Kore – a pronunciation play on the word “core,” referring to the spine and how it’s one of the “core” body parts.
Kore community-based organization officially launched its website and social media in late April 2024. It’s found at www.koreug.org. My family and close friends are elated with the organization, but more so with the decision to begin this project considering my personal experience.
I am not the most connected, wealthy or professional person in this country, but I am hopeful that my experience will drive this organization to its goal. I want to see more awareness about this disease, pregnant women taking the measures to protect their babies against it, children growing up without its associated stigma and combating the associated mental, social and physical challenges. I hope to assemble a team with so much creativity, that we don’t do things the normal way.
And most of all, I hope to instill an essence of God into the hearts of all we touch. Without Him, I would not be here today.
I knew of Him, but once I started to foster a deeper relationship with Him, that was the true beginning of my life. I was born with something I did not ask for, but I will not let it interfere with the dreams I have for myself.
I want people with a similar story to read mine and know they are not alone. In my testimony to come, I hope to continue sharing to prove that no matter the disease, one’s life can still be fruitful and joyous.
