Sickle Cell Awareness Month — Sabah Imani

Transcript from a conversation recorded 9/23/20

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 Sabah Imani. Her mother Vonda and I worked together when I was just a production assistant and she is a fiercely, talented makeup artist. I remember her always talking about her daughter who had Sickle Cell and then, you know, after following each other on social media, being able to follow and see her journey, trials and tribulations, Sabah Imani is definitely a warrior and so I definitely wanted to have her share her story. So without further ado, here’s Sabah.

My name is Sabah Imani, I am 24 years old, born raised, and still living in Los Angeles. And I was diagnosed with Sickle Beta Thalassemia, just three weeks old, but I am currently a survivor of a bone marrow transplant that happened while I was 22 years old. And now I am technically, Sickle Cell free, but that doesn’t stop me from being in the Sickle Cell community. Growing up with Sickle Cell is hard. I was bullied. I was teased for being different, being the sick girl. I was always the girl that was sitting in the corner because nobody wanted to play with me. And because of all of that growing up at a very young age, clearly being different and not being liked for it I decided going into middle school and high school that I would not tell anybody that I have Sickle Cell. I didn’t want to be judged. I didn’t want to be prejudged. I didn’t want to be different. I just wanted to be normal. Then I woke up. I think I was about 16 years old and I told myself, Sickle Cell will forever be a part of you.

That’s something that you will never, ever be able to change. So why are you hiding it? Embrace it. This is who you are. And from that day forward, something that I was scared to tell people, I then turned around. I was proud to say that I have Sickle Cell and was willing to educate anyone that would listen.

I just wanted people to know that I, I am not contagious. I am not a disease. I have a blood disorder and you should look at me just like you look at anybody else. I’m just like you, my blood just flows a little different. And the stereotypes that Sickle Cell patients are “faking their pain” or “just want drugs just want to get high.” That’s not true. Granted, there are some people that abuse having a disorder like Sickle Cell, but majority of us wish that we didn’t have to take a pill every day. We want to be able to go to the pool or go to the beach, get in the water. And enjoy it without having to worry about a Sickle Cell crisis.

Later on down the line, growing up, I was always stressed. Well, I thought it was stress, now that I’m older, I know it’s anxiety. The simple thing like taking a test, sitting in a classroom full of people would send me to the hospital every single time during middle school. In the beginning part of high school, I was in the hospital every month, just because of the stress that school brings stress and anxiety was definitely my number one trigger when it comes to a pain crisis. After learning what triggers my pain, I started to become one with my body in tune with my body. I would start to listen to it.

A lot of times when you’re young and your friends are going out, you say, “yeah, I’m in pain, but I still want to go out. I still want to have fun. I still want to be a teenager.” And I finally started to take a step back and listen to my body and actually do what it was telling me to do.

I will take that time to myself. Whether I’m at a party at the mall or just at home, I will then go to someplace quiet someplace where I can regroup and listen to what my body is telling me. That’s when I learned, that it is okay to go home early, it is okay to listen to what your body is telling you.

And for a long time, my body was telling me to find peace, find something that gives you peace. And that’s something I found on a ranch full of horses and dogs, and these gorgeous animals. They love you. They don’t judge you. They don’t look at you funny because you’re different. They don’t talk about you behind their back.

They just want you to love them. The way that they love you. Growing up with Sickle Cell, you deal with a lot of pain, a lot of trauma, you have to grow up way before your time. And as you get older, you start to wish and reach for that childhood you never had. And for that reason, I decided to have a bone marrow transplant through a clinical trial.

Knowing that I am putting myself on the line, just so the next generation of Sickle Cell patients could have that option of being cured with this bone marrow transplant and to have a better life. I love my Sickle Cell community. We are forever family and we are warriors for life.

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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