I have been sick since I was born, but who would have thought it? I wouldn’t have known if I had never tried to model, or rather, I wouldn’t have known as early as I did if I had never tried to become a model.
I tried to venture into modelling three times and failed. Either modelling never wanted me or the stars didn’t align enough to help me achieve it.
The first time I ever went for a casting, the director called my shoes –white wedges I had borrowed from my eldest sister “hideous”. He asked that I go change them and come back. I didn’t.
I missed that chance.
The second time was the same time I got an admission into university. I had to choose between Admiralty lane and Choba. Choba won – University won.
The third time, I thought it would be my ‘Agbani’ moment – the moment when I’d finally get it all. Since the name of Agbani, the Nigerian model who won the Miss World competition in 2001 kept getting thrown at me, this was the moment when I’d get to pick it up and wear it, but no. Instead the stars misaligned and realised it was time to set loose a disease on me, a disease that had no definite cure. In legions and in a hurry, they sprouted from my body like seedlings hungry to see the sun, breaking through my skin like plants that had finally tasted moisture. They drew comments from my agent like, “What are those on your skin? Are they communicable?” I didn’t have an answer.
The first doctor I ever saw didn’t know what they were and couldn’t admit he didn’t. He ran some tests and misdiagnosed me with filariasis. I started treatment for that right away but never got cured. The second doctor I met, a kind lady, suggested a biopsy, after which she stated I had no need to panic since it was a rare genetic condition that wasn’t fatal.
Ripe nodes painfully shooting goo from my skin wasn’t fatal? Nope! I couldn’t take that. I needed another option. I needed a way out.
I met another doctor who casually recommended incision and drainage, like boring holes through my pores was a walk in the park. What other choice did I have? I obliged. After the procedure, I was sore for about a week and some of the scars never healed. In less than three months, the nodes filled back up again, and I was back to square one. The same doctor gave me a cholesterol scare and also asked that I cut out milk, eggs, and palm oil from my diet.
Time flies when you are happy, they say, and sadness slows it down. Time seemed to slow for me as a solution wasn’t presenting itself.
Questions from friends and colleagues poured in, and at the same time, crazy suggestions in the name of advice: “Apply aloe vera on your skin” or the ones that went ahead to tell me, “Put antiseptic in your bath water”, as though the disease were caused by bacteria. Suddenly everyone seemed to know the cure for the disease that I had researched and seen doctors for. Everyone seemed to have a “try this, try that” they wanted to shove down my throat, making it feel like I hadn’t been doing enough. Let’s not even get started on the spiritual crew, the ones that shoved scriptures of “divine healing” down my dress as though the disease were the result of sin and lack of faith. Sometimes I was tempted to scream out loud, “Just use Google; Google is your friend!”
I started hating my skin like I had another, but since skin isn’t something you casually walk into a supermarket and buy over the counter, or a cloth that you change out of – I was stuck with it. I found myself in need of a change of wardrobe, wearing long sleeves and high-neck tops to hide the nodes and scars and minimise the questions they brought. I found myself seated at the table of sadness, dishing from a pile of pain I never asked for but couldn’t reject. One time I went out and a node broke on my back, bloodying my white shirt like I had been stabbed from the back. I had to move around with that gory sight and at the same time waving invasive questions. For the record, if you ever see me going about with a jacket in one hand even when the weather is hot, or you see me wearing one even when the sun is scorching, that’s why.
I met another dermatologist who recommended yet another dermatologist who recommended a laser surgery of three million naira. I didn’t have that amount at that time but here’s the bizzare thing: after the laser surgery, the nodes would come back in six to seven years’ time, then I would have to repeat the procedure. The disease is like a vow; till death do us part. The only thing is, I was never given a chance to make those vows – a forced marriage with no escape.
Doses of tetracycline as prescribed by another doctor didn’t work for me; instead, they multiplied the nodes. Lipidvastin? That drug left me with swollen feet so alarming the doctor had to take me off it.
Apparently, this disease doesn’t spring up from nowhere; it’s inherited. Other people inherit wealth, old houses, or old records, but mine just had to be different; I inherited a disease – one so sneaky it doesn’t show at birth. It hides itself in the genes then springs out like a jack-in-the-box at puberty. I sure inherited a lot of weird stuff from my dad. I got his bad teeth too – I mean, I have two broken molars hidden deep inside my mouth and also some shaky premolars. You would never notice their weird existence except if I told you (Dad had the same; he replaced some of his teeth that could no longer stand with golden replicas). I think my genes somehow knew I would never get to meet him, so they decided to replicate a whole lot of him in me. I got his height too. I stand about six feet without shoes, so that’s at least one thing I am grateful I inherited, oh, and also his skinny frame. His old friends swore I was the exact copy of him, a resemblance I could never see putting our pictures side by side. I always thought they lied and said that for pleasantries, but I guess resemblance is not always just about the face.
My friend Ballie once asked, “What if stars never align?” That left me thinking. They seem not to have aligned for me yet. As Pharrell Williams said, “Don’t wait for the stars to align; reach up and rearrange them the way you want. Create your own constellation.” That’s what I am currently trying to do.
Last harmattan, as the northern dust came hollering in, coating every surface in a fine golden layer, and as its accompanying dry wind blocked every nose, making breathing a discomfort, I heard fashion still uttering my name in its loudest whisper. I answered. I started sewing dresses.
Since this Steatocystoma multiplex that I find myself with is a rare genetic condition and not life-threatening or communicable, I am advised by the doctors to “live with it”, since I won’t “die from it”. I find this so funny because, as much as I would like to argue that death isn’t singular, and point out the fact that hopelessness is a state of lifelessness, and lifelessness as we know is death, who is listening? Lailah Gifty Akita, the author of Think Great says, “Without hope, we are lifeless.” But let’s leave that for now.
Steatocystoma multiplex, according to Medlineplus, “is a skin disorder characterised by the development of multiple non-cancerous (benign) cysts known as steatocystomas. These growths begin in the skin’s sebaceous glands, which normally produce an oily substance called sebum that lubricates the skin and hair. Steatocystomas are filled with sebum. It can be caused by mutations in the KRT17 gene. The KRT17 gene mutations that cause steatocystoma multiplex alter the structure of keratin 17, preventing it from forming strong, stable networks within cells. These abnormalities lead to the growth of sebum-containing cysts in people with steatocystoma multiplex.”
You see what I got dished, unprovoked? A disease I never bargained for. As the last child of my parents, I find it funny that the disease decided to patiently wait for me and avoided all my five older siblings.
Well, it’s been eight years of knowing the name Steatocystoma multiplex, and seven years of needles and drugs. For the present, I create fashion for others to wear, and I like to think that’s okay.
Lately I have been asking myself, what if the stars are already aligned but I don’t see it that way?
Amy Atherton, a health YouTuber, sometimes says, “The stars align more often than we realise…but we’re usually too busy staring down at our feet and wondering why we are stuck.”
So here is to focusing on the good, magnifying the goals I’ve achieved, and giving myself credit for moments won, letting myself off the hook from time to time. And breathing.
I know sometimes you might be tempted to ask me, as a client did recently, “Are those mosquito bites on your hands?” but the answer will be no. They are Steatocystoma multiplex, basically, fat cysts. “Fat cysts? Is all your body fat turning into cysts?” The answer is no. I know I am skinny, but the answer is no.
Christy Ogbenjuwa is a lover of sleep and almost everything edible. Creator of exclusive meals, custodian of dreams, and a wielder of pens.
*Image by Nsey Benajah on Unsplash