Sickle Cell Awareness Month — Jay
Transcript from a conversation recorded 9/9/20
please excuse any typos. link to listen to the recording of this transcript here
Beyond Our Cells is a podcast where I Taylor Camille share stories by those living a life fully and beyond any stigma or perceived limitations a health condition may have on their day to day lives. As always, please share and subscribe if you haven’t already.
We’re continuing our series for Sickle Cell Awareness month Sickle Cell Disease is the most commonly inherited blood disorder in the United States affecting an estimated a hundred thousand Americans It occurs primarily in African Americans although it can be seen in other races as well however, one in 500 African Americans have the disease. I am one of the ones in 500 and so this particular disease is very close to home for me.
In a series of letters, we’ll hear from other people with sickle cell each week of September and then in October, we’ll pick up where we left off this season, talking to Black men.
Today, we have a reflection from Jay on his life with Sickle Cell. Jay happens to be a friend of mine. He’s based in DC, an artist. Art collector, ramen enthusiast and he agreed to let me read some of his reflections of his life and learnings from Sickle Cell. So here are Jay’s responses, read by me.
Sickle Cell is a part of my every day so to me it means taking care of my body or reap the consequences, drink water, or reap the consequences, knowing when to take a break, no matter what people say, because only, you know your body. Unlike doctors who swear they know all people with Sickle Cell are the same.
When asked, when do you choose to tell others that you have sickle cell? He replies, it depends on the relationship I have with the person. I don’t tell a lot of people unless they can tell something is off with me. I like to hide it well, so people don’t judge me or try to take it easy on me. I don’t want it to be a crutch.
When asked what triggers pain crises for you? He responded, for me a pain crisis can happen from daily activities to the weather, lack of sleep and even stress. I tend to stay away from smoking and drinking since it’s been a way that my blood thins and makes me more sick. Staying hydrated is a way I prevent a lot of crises due to the fact that being dehydrated will send me right into crisis. I wish people knew that Sickle Cell is not contagious. It’s life threatening and needs to be spoken on more in the black community testing early for it, and knowing your partner’s blood type are all important things to stop the cycle.
It’s taught me a lot about myself, especially in my limit when doing certain activities. When I need to increase my water intake to even feeling my knees hurting before it rains. Weird, I know, like an old man, I can feel the ache and I’m like, yep, it’s gonna rain soon.
Thank you for listening. We’ll be back next week with more reflections on Sickle Cell.
Beyond Our Cells is an original series produced and hosted by me Taylor Camille, a variety of the series artwork shared here and on our Instagram @beyondourcells are created by Carmen Johns and Sierra Hood. My hope is that these listening’s have left you with a warm heart and an even cooler mind. I hope you are left feeling able to seek peace in the spaces and places you may find yourself in.
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