How exactly can one describe Ijeoma Ogwuegbu? For one, to say she is strong would be a gross understatement. You might also be tempted to say resilient, but that’s word she doesn’t quite like.
Let’s just say then that this very special woman and artist, who has been battling Fibromyalgia since January 2019 is one of those our young women whose story won’t fail to inspire you.
Find out more in this chat with The Interview.
You were diagnosed with fibromyalgia in 2019; how did it all began?
I developed fibromyalgia January, 2019.
It started after I felt a sharp pain in my back from there it got worse and I eventually got diagnosed November, 2019.
Was your diagnosis straightforward or you had to jump through loops and hoops to discover what was wrong with you?
My diagnosis wasn’t straight forward. I started having symptoms in January and only got diagnosed in December of the same year. I had to go to so many places; hospitals for tests.
In the end it cost me almost a million naira trying to find out what exactly was wrong with me and it was only towards the end and it was by chance.
I was writing a lot about my symptoms on Facebook and a friend saw it and replied that what I was talking about sounded like a rheumatological issue, and that they had a rheumatologist that I could see.
So, I had to go see a rheumatologist and that’s when I got my diagnosis.
What exactly is fibromyalgia in layman’s terms?
In layman’s terms fibromyalgia just means your body is interpreting everything that comes to it as pain.
A subtle breeze can feel like crushing pain and you have stabbing pains all over your body.
Then it also affects your brain in the sense that you can’t remember things.
You can’t store memory; you lose some memories from the past.
Imagine waking in the morning and you won’t feel refreshed. That’s one of the symptoms of fibromyalgia. You sleep and when you wake up, it’s like you didn’t sleep at all. It’s like you went to war in your dream and your whole body aches
Many Nigerians are not aware of this condition and therefore may not understand what you are going through; Can you tell us more about it?
So, basically, it just affects your body and your brain and you are in constant pain every moment of the day.
The only thing that changes is whether the pain is high or low.
Some people have to use a wheelchair.
I currently use a walking cane because it affects the joints, bones, skin and muscles; you have pains in all of these areas.
Basically, imagine waking in the morning and you won’t feel refreshed. That’s one of the symptoms of fibromyalgia.
You sleep and when you wake up, it’s like you didn’t sleep at all. It’s like you went to war in your dream and your whole body aches.
Sometimes, the pain is so bad that you actually scream out loud, and sometimes you find yourself just crying.
I told someone that I cry at least once a day just because of the pain.
What are the most challenging aspects of Fibromyalgia you’ve had to deal with?
I have become kind of disabled because of it.
Then when you go out you realise that so many disabled people can’t even access even buildings.
Sometimes buildings are not built in a way that allows disabled people to move around.
For instance, if you have a wheelchair or a walking cane, sometimes a building four or five flights of stairs without a lift.
So, there is no way for you as a disabled person to actually assess so many buildings in Nigeria.
And even the new buildings are being built in Nigeria without the same kind of consideration that is necessary.
So, that’s one major thing for me; the fact that we are building and basically pretending that an entire segment of the society which are the disabled do not exist.
You recently completed a 60 by 100inches dot art painting; how does that make you feel?
Sometimes just seeing that painting is almost like an out of body experience because I just think ‘wow was I the one who actually did this’.
And it makes me feel good because I started painting mostly because I wanted to feel something other than pain; something that would move me and making arts and seeing other people experience my art is actually very moving for me because it’s good to feel like the thing you felt that made you do it is something that other people can feel as well.
It took me almost two and half months to finish it because there are some days I couldn’t work at all because I was in so much pain.
And then, there were days I worked because I was in so much pain, because I wanted to allow my mind to travel in other ways.
The pain is there and there’s hardly anything I can do about it.
And it can switch in seconds. It can go from manageable pain level to pain so excruciating that you are screaming.
Really, there is not much that you can actually do about it.
So, it’s like this is what’s happening in your body; this is what happening to your body, so what are you going to do?
Are you going to be this person that is in constant pain or are you going to be someone who survives in spite of the pain or whatever it is you are feeling in your body?
How has this affected you, especially as a single mother of three children?
Yes, it affects my parenting a lot but I have been blessed with children who are just so resilient, though I don’t want to use the word ‘resilient’ for them because that’s not a word I like.
But every time something happens, just watching how they react to it and deal with it, is so inspiring to me personally because it helps see that, yes, you might be in pain, you might be hurting in so many ways but you know, you can still move forward fully acknowledging your pain.
And I’m very comfortable in doing that in the sense that they let me know how they’re feeling and what they’re feeling, whether it’s sadness, anger, whether it’s pain about the situation.
They let me know about that and I try to be there for them in that sense. In other ways there are so many things we can’t do.
I can’t run around with them.
There are so many places I can’t go to with them but when we are together I try as much as possible to make it something that’s memorable for them or something that they remember because I know that personally for myself I remember so many moments with my parents and some of those thoughts are very comforting now.
So, I want to also give them that so they have a kind of my memory bank.
Sometimes just seeing that painting is almost like an out of body experience because I just think ‘wow was I the one who actually did this’
Do you think there’s an enabling environment for people like yourself to thrive?
In Nigeria we cannot say that there is an enabling environment for anyone to survive.
The way our country is at the moment is not conducive for anyone.
Nobody should have to live the way we live in Nigeria with all the forms of stress we are forced to endure and terrible
government, bad roads, and just the lack of value for human lives.
Nobody should have to go through that.
Then of course when you think about it, it’s not working for anybody; able or disabled. It’s not working for anybody so I can’t even say that there is a conducive environment.
There is no conducive environment in Nigeria for a human being to exist in a way that they are valued.
Your last word
I’m grateful for the attention that my work is getting and because it’s something that is conducive for my body physically right now.
It’s not perfect because I still have to make sure I don’t over work, I still have to make sure I don’t stay in one position for too long because that can be crippling.
And I hope that this becomes something that I can look back to in the future and say, ‘you know what, that happened and I was part of it, and I’m better for it.
