“Throughout my whole entire life, when it comes to school, it was always a challenge knowing that I would have doctors appointments, knowing that I would have days that I would miss.
I always had to stay a step ahead of the game when it came to assignments, and I always had to talk to the teachers at the beginning of the year, throughout the year, to get them to understand my illness. And, it was challenging as a young kid, but the older I got, the more I was able to communicate with them, and let them know exactly what’s going on.
Michigan is an at-will state, so basically they can fire you for whatever reason. So therefore I’ve been fired because I have not been able to come to work or I’ve gotten sick for a period of time. They’ve been able to cover that up because they can just say, ‘Oh, he’s not performing’. It’s not that I’m not performing, I’m sick, I’m not there.
It’s always concerning and it’s always been an issue whether or not I should work part time or should work full time. What I’ve learned is that working full time is stressful and more stressful when it’s a job that is not in my field. So like right now I’m here ready to graduate next month from a school called Smith Tower, which goes with my undergrad degree, and I feel like once I get into my career the stress will be lessened and so, therefore, it won’t wear on my body as much and will allow me to work full time. But it’s still stressful. Some days I’m going to work, some days I can’t, some days I’m at 100%, some days I’m not.
So I always tell everybody, I mean I’m 32 and I’ve been blessed, you know, I’m still here. I’ve lost a couple of friends growing up in the clinic that had passed away. It was sickle cell but they also had a bone marrow transplant. But the advice I give to anybody- live your life. You know your body, know when you’re done. And you, ‘Hey, I need to take a break’ or ‘Hey, I need to go sleep’ or ‘I need to do…’ whatever you need to do for you. You have to know your body in order to continue. But the sky’s the limit. Do what you do, be you. You know what I’m saying? Like all those goals and dreams that you wanted? Aim for them. Do we worry about ‘am I going live tomorrow?’ Possibly. But you can’t live your life being nervous or being scared that you may die.”
— Clifton, SCD Warrior