People Have A Lot To Say About The Lumps

July 9, 2021

As told to Mariam


I have always had these lumps on my body. My people say I was born with them, but they started as little brown spots before they became lumps. I saw them but I didn’t know what they were. I think I was six or seven when I was taken to the hospital to get a biopsy. Some of the lumps were removed for tests and it was an extremely painful experience. When the results came out, the doctors told my parents that I have Neurofibromatosis, a genetic disorder of the nervous system where tumours grow on your nerve tissues. 

There’s no specific treatment for Neurofibromatosis, just drugs to manage whatever complications that arise. That didn’t stop my mother from obsessing over getting rid of the lumps, though. I have three brothers and none of them has these lumps. Neither do my parents. People always have a lot to say about the lumps, offering one solution or the other. I remember the time someone told my mother that bathing me in her urine every night would remove the lumps. She actually did it for about three weeks until my father told her to stop. 

As I grow older, the lumps get bigger and multiply. As a result, I have many other medical complications to deal with. The lumps can grow anywhere on my body — in my ear, on my eyeballs, even in my brain. One time, I was on medication for seizures but stopped taking them when the seizures stopped. Right now, my doctor says there may be a lump growing in some part of my brain that is affecting my ears and eyes. My eyesight is terrible and I get earaches all the time, which feel like a ringing in my ears. It could get worse but my doctor says to relax. Sometimes I feel like I’m living on borrowed time because at any minute, shit could hit the fan and I’d be stuck in the hospital.

At school, I am doing okay. It is said that people with neurofibromatosis develop certain learning disabilities — they are slower than most people when it comes to learning new things. It’s either that or I no too get sense like that. LOL. My mental health is in shambles, of course. Isn’t it obvious? I’m covered in spots.

Otherwise, I live a basic life. I wake up, eat, go to work, come home, and sleep. I try to be independent so I don’t feel like so much of a burden to my parents — it can’t be easy having a daughter that everybody stares at. It’s why I’m scared of being in a relationship. I deal with people asking me stupid questions all the time. Some people stare. Some mutter “sorry” as they pass me. What if people start asking my partner questions about my condition? How would they feel about it? Sometimes, it’s hard for me to look in the mirror. I tell myself, “Omo, na small thing. No be only spots?” 

I had a boyfriend when I was 18. He was a popular and many girls liked him. I was always self-conscious and thinking, “How do I fit into this person’s world looking like this?” He acted like it didn’t bother him but I couldn’t stop thinking about it. I eventually ended things with him.. I haven’t been with anyone else since then. It’s crazy that my parents are talking about marriage these days. They haven’t said it directly but it’s a prayer point for them. One time, one of my relatives said, “Don’t worry, you’ll find a good husband who won’t mind.” I didn’t want to think too much about what that would take because who would want to marry a girl covered in spots? Would anyone look at me twice? They would probably be worried about what our children would look like. 

I am trying to focus on self-love in the meantime. My favourite part of my body is my legs. They’re not long or anything (I’m not 6ft), but I love them because they are the only parts of my body that don’t have too many spots. I am also focusing on school and my business. I am in my final year now and can’t wait to graduate. 

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Mariam Sule

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