Living in Lagos Nigeria often requires you to exist in spite of the odds – to wake up every day and confront the consequences of poor leadership, porous educational systems, bad infrastructure and lack of sufficient economic opportunities. Sometimes, personal hardship or a physical challenge is thrown into the mix – leaving a trail of setbacks, difficulties and uncommon stories of survival and success. In this interview, we speak Obii Ifejika, a Nigerian-based Documentary Photographer, Poet and Content Designer living with Scoliosis in Lagos.
P.S Scoliosis is a curvature of the spine affecting about 2 -3 % of the population with no known traces as to the cause. Although it is not life-threatening, it is painful and can interfere with the lifestyle of the patient. In 2013, the UK Scoliosis Association declared the last Saturday of June as the International Day for Scoliosis.
How did you find out you had Scoliosis?
SS1. A Saturday morning like all others in the female hostel, after my chores were done. I started to feel like a clamp was prying apart my pelvis. I hadn’t experienced anything like it before. I wasn’t prone to period cramps or complications. The pain was so intense that the House Mistress called my parents to pick me up. My father came. Later that afternoon at the doctors, a swelling was observed at my right hip. The doctor said it could be cancerous or benign.
Then the pain stopped and I returned to school. After months of trolling hospitals and diagnostic centres with my mother, we visited a surgeon who was close to the family. He re-examined my x-rays and pointed out that my neck bone was curved. This was something that had gone unnoticed by the radiologist, several doctors and myself. In this time, my left rib had extended forward. The surgeon ordered other specific x-rays and I saw my entire spine for what it had become. An S-shaped curve. The diagnosis was Thoraco-Lumbar Adolescent Idiopathic Scoliosis. Thoraco-lumbar for the affected bones, Adolescent because I was 13, Idiopathic because the cause of my illness was unknown.
How does it impact your daily life?
It does and it doesn’t. I don’t like pain, but I’ve developed a high threshold for it. Early on, I learnt that I couldn’t always explain myself or my situation to people when I didn’t feel good. Most times I was met with scepticism and just outright denial. The moment I got diagnosed, I started to gain weight a lot faster because I couldn’t be as active as I used to be. I was involved in everything once- sports and all. Now I experienced pain quicker and it was basically interpreted as fatigue from fat or lazy person. So I never complained. If I can’t get out of a situation, I just roll with it.
For 2-3 years, I wore a brace for 23-hours out of 24. It was heavy and uncomfortable- but it helped reduce the movement around my spine. I left boarding school in my final year. Most of my days were hospital visits, so it was tedious.
That said, there are so many days in-between when I don’t remember during the day but every time I sleep and wake up the reminder is there. I have to do everything differently. Posturing and sleeping positions. The beds, the chairs I sit on. It all matters.
I have worked with and through Scoliosis since I was thirteen, so I exist in the world in such a manner that if I never mentioned it, you wouldn’t know. Tight clothes can give me away because my body alignment is obvious. Outside of that, we’re fine.
Early on, I had many sad days where I needed to power through pain, questioning why I had to experience these awful things. Different variations of pain in unique places, paralysing sensations, sleepless nights, then, of course, I started to sleep on the floor because everywhere else hurt. I couldn’t concentrate for long… it was hard but I didn’t want to break. I had family rush to my aid but there’s only so much they could do. I learnt how cruel people could really be. For example, I tried to find a day school close to home and they wouldn’t take me because they couldn’t punish me. Period. I also started to see Scoliosis patients everywhere. All of a sudden I wasn’t the only one who had this thing. I was daily in the cyber-café doing all the research I could. I joined a yahoo chat room for scoliosis patients and no one was saying a single thing. It made me wonder how bad this condition really was.
Does the condition get better? Are there things you able to do differently now?
So many things. Living now is measured by managing pain and managing expectations. It’s not difficult, especially because I understand my body better and know my limits. The great thing is, sometimes – Maybe most times there are no limitations perse. I can either walk a 5K or I can’t.
How have your family and friends dealt with it?
My friends at the time were really sad for me. My family too. Nothing was clear. I had an illness they hadn’t heard about before and didn’t know how bad it could get. Also, they couldn’t see beyond how poorly I felt. However, that changed with time. My family sought medical help home and abroad, from all of these consultations, hit and miss, I learned to take care of myself. It became clearer to everyone that I wasn’t dying and we all just rolled with the punches.
What treatment options are available, especially here in Nigeria?
Scoliosis isn’t something you cure as much as it is a condition you manage. There’s also a spectrum of Scoliosis types. Some have a noticebale deformity, others don’t. I only know of two Chiropractors in Lagos, since that’s where I live most of the time. One of them has been my doctor since 2006. Physiotherapy doesn’t quite cut it, I’ve tried that. Someone once gave me a massage that resulted in a muscle injury, because they didn’t understand my condition. So you have to know all you can about your illness. A chiropractor also gives you the relief you didn’t even realize you needed, and it can happen in one session.
There isn’t a lot of awareness or conversations around it – how can we change that?
I’m not sure that we can. I’m not sure awareness alone will be useful if people don’t have a place to go for treatment. And the truth is, working with a chiropractor is a luxury.
However, we can find a balance if we can back up awareness with healthcare. We can start by talking to the patients getting their braces at Igbogbi. In my experience, most of the wellness you’ll get from scoliosis will come from personal work. Adjusting your posture for sleeping, standing, working… Knowing what to do when you’re hurting, stretching that help relieve tension in your bones. Maybe we can start there. Give free classes to parents and patients, or providing a hotline that they can call to ask any questions. It’ll do a world of good.
If you could say something to others living with Scoliosis, what would it be?
Do all you can to understand your condition so you can fit into society in a way that takes care of you. You’ll find that you don’t have as many limitations as you thought. People aren’t as understanding as you’ll expect. Your quality of life as a Scoliosis patient is determined by you.