When did you first become aware of it?
I think if you spend enough time in and out of a hospital as a kid you are bound to know something is wrong with you. But I became aware of what exactly was wrong when I got into boarding school. I had to register at the sick bay as a ‘sickler’ and my teachers, matrons etc had to be notified. Which means everyone in the school from JSS1 to SS3 finds out that you are a ‘sickler’. Before I knew it I’d be walking down a corridor and a senior will want to send me and someone will say ‘don’t send her o she’s a sickler’. I just used to think sickler is not my name, please.
How was it like dealing with it in boarding school?
There were a bunch of us and for some reason everyone expected us to be in some kind of merry gang. Someone will be talking about a Mary in red house and I’ll be like oh I don’t know her and the person will go ‘ehen? But she’s a sickler too’. It was just super weird. I wasn’t close to any of the others. My own miseries were enough for me, please. I surrounded myself with going strapping healthy women who could carry me to the sickbay when I had a crisis. Lol.
Do you feel any resentment?
Not really. But there was this day in senior secondary school, I’m not sure which class. They were teaching us about genotypes and crossing. And people were asking questions, inevitably someone asked ‘so AS and AS shouldn’t marry?’ And the teacher went on and on about how it’s unadvisable because you’ll get an SS kid. At that moment I was so mad at my parents. I was just like who the hell sent you people. Who sent you? Lol. But I’m over it. In their defense, I’m their only child they were hoping for an AS and when they had me they didn’t try again.
What are you most scared of?
That I’ll never get the chance to become old and grey. For some reason, a lot of people believe that once you cross the age of 21 you are in some sort of safe zone, but it doesn’t work like that. A crisis can creep up on you at any time. You could have 5 good years in a row and just one bad month could take ages of your life expectancy. I just want to live to an age where I at least get to see some grey hair. Like my 50s. If I get to live to my 50s then I’ve gotten a pretty great deal.
How often do you have a crisis
As a kid it was every other month. As at today the last time I had a crisis was a year and a half ago.
What exactly is a crisis?
It’s actually called a pain crisis. It happens when we get a blockage in our vessels which happens because our blood cells don’t move around our body as easily as regular blood cells do. When a blockage occurs, the most intense pain you can imagine follows and it can last anywhere from a day to weeks if it’s very serious.
What does the pain feel like?
Man, this one is hard to explain. If I’m not in a crisis it’s a dull ache in some joint or muscle. For me, the biggest culprits are my lower back and hip joints. Those are always aching, so I really hate walking. When I’m in a crisis the pain starts in my legs and slowly progresses to consume my whole body. It’s sharper and more intense and anytime someone preaches to me about hellfire and how intense the pain is, I always think ‘well it can’t be worse than a crisis’.
What’s a constant in your life?
Pain. I’m almost always in pain even when I’m not having a crisis. I saw my Doctor recently and he thinks sometimes it might be phantom pain. Apparently, when you’ve been in pain for all of your life I guess it feels weird when you are not and your mind tries to trick you into thinking that you are or something. Sometimes it’s mind-numbing pain and I can barely move, other times it’s in the background, and I can live through it and do stuff normal people do without them realising that I’m in pain.
The most difficult thing?
It’s impossible for anyone to know how much pain I’m in. If you get a cut or break your arm it’s possible for people to visually estimate how much pain you might be in. But for me aside from my parents and doctors, and it’s not even all of my doctors no one knows how much pain I’m in on the really bad days. I’ve had a friend tell me I couldn’t be in that much pain after I told her that I was in too much pain to make it for a party or something just because I was moving around my room. Maybe if I were a little theatrical and rolled around and screamed a little, she’d have been more understanding. But I’m usually in too much pain to even do that.
Not right now. I go on a casual date here and there but I’m not seeing anyone seriously and don’t plan to for a very long time. It’s just too stressful. More for the person I’m dating than for even me. My last boyfriend was very sweet but he’d panic at every little thing. One time I was in a crisis and I asked him to take me to my hospital. By the time we got to the hospital, you’d have thought he was the one who had a problem.
Is living with the pain the hardest thing?
You’d think but it’s not. It’s how disruptive this thing is of my life and the people around me. I had an extra year in Uni because I was in and out of the hospital for a greater chunk of the first semester of my third year. I ended up having to defer the whole year so that it didn’t affect my CGPA. Then there’s the guilt the financial consequences of my condition are heavy. I’m thankful for them that I’m an only child.
One thing you really want?
A bone marrow transplant. It’s very expensive and very risky. It’s something my parents and I have discussed off and on for years. But I’ve been in a good enough place lately and they don’t want me to risk it. Me, I’m ready to risk it all. It’ll be nice to be able to live the rest of my life without having this thing hanging over my head.