Growing up Beside Sickle Cell Disease

with Utenge Utuk

September 8, 2020
BY Kiersten

Utenge ‘T’ Utuk is a product of outrageous circumstances. First-generation Nigerian American, a personal trainer, and fitness juggernaut, Utenge’s particular upbringing while drastically unexpected, was still filled with wonder, and growth. As one of four children with two sisters living with Sickle Cell Disease (SCD) and the third a trait carrier, ‘T’ understands first hand the madness of growing up in a home teeming with SCD. But his journey with the chronic illness didn’t end after moving out of his family stead, it progressed through his sons. With three boys, all of whom carry the SCD trait, ‘T’ has learned to embrace this disease that has encapsulated his entire life. Not only did SCD pose as an untimely adversary, but it became the glue that kept this family so close, it became an educator, and it was a motivator for learning to embrace life’s challenges. Read my interview with TruBody Wellness’ Coach ‘T’ here, and learn about his story with Sickle Cell Disease.

Kiersten Adams: How has working out become your passion and livelihood?

Coach ‘T’ Utuk: I got into a fight with my youngest sister. I’m about 14, she’s 10 or 11 at this time and she almost beat me in this wrestling match, fight that we had. I ended up winning, and I get back to my bedroom and I’m like, ‘dude, this is unacceptable.’ I can’t lose a fight to my little sister it just doesn’t add up. This is my freshman year of high school, and I hear from some of my friends at school that are on the track team, they work out. So I joined the track team to workout, and I would come home sore. But what happened after the soreness went away, I got addicted to the ability to change my body at my will. And it gave me something to control. I realized I was always fighting for control because in the household, growing up with the sickle cell, there’s so much uncertainty every single day because we had no control. So I started gravitating towards working out because if I go to the gym today, 15lbs is 15lbs. I come to the gym tomorrow 15lbs is still 15lbs. It was just always consistent. It doesn’t change up on me. I can go to my weights and they’re going to do the same thing today, tomorrow, and the next day. I began to find a certain peace in working out. My first sanctuary, where I found God. 

KA: Where did the idea or motivation for TruBody Wellness come from?

TU: I always loved working out, but I never thought of working as more than a hobby. My family’s from Nigeria, and it’s customary that in an African household, you have very few occupations that are deemed as acceptable. You can be an accountant,  an engineer, a lawyer, a doctor. One of those top four things, outside of that you’re a disgrace. That’s just how it’s positioned, and everyone knows it. You’re always taught to excel so I didn’t think of working out as anything more than just working out. As I was growing, I did well in science and math so I was in all the engineering programs. My background is in mechanical engineering, but even all through college I was working out. I didn’t know about sports medicine. I didn’t know about kinesiology. I didn’t know about physical therapy. Those were completely foreign to me. Junior year of college, I walked into the gym, and a friend of mine was an exercise science major. I didn’t know this was even an option. After graduating I decided to try and get a job at a gym. And I know that they had an internship program that was a 90-day program where they bring you in if they feel like you have potential. So that’s how I got started. It was not something that was planned out or desired or sought after, it just happened by mistake, in essence. Looking for something to do that I enjoy doing.

KA: How important is physical wellness when you have a chronic illness?

TU: It’s integral. From the moment we’re born we are in a marriage. We have a union between us and our body and that’s something we may have not been cognizant of, but when we add the additional layer of having a chronic illness to that, the delicate balance of your body is that much more delicate, for lack of a better word. When you engage in physical activity and training, it trains you to become more in line with your body. The more physically fit, the more you’re able to endure.

KA: How have you learned about Sickle Cell Disease?

TU: I learned about it because I was born into it. Two of my sisters have the disease, my parents have the trait. My oldest sister has the disease and I was the second born, so it’s all I’ve known. My sister after me was born with the disease as well. And then the last sister has the trait. I’m the only one of my family who doesn’t have the trait or the disease. That’s all I’ve known growing up.

KA: How does Sickle Cell impact your life?

TU: Day to day, it doesn’t impact as much now as an adult versus when I was younger. As an adult I check in with family members, making sure they’re getting ready to go to different doctor’s appointments. Just staying on top of what’s going on because we’re all kind of in the loop as to who’s where, who’s not feeling well, who may be hospitalized, who needs a transfusion, issues along those lines. Growing up, It was much more of an impact on the day to day. Literally, on any given day you could wake up and somebody was going to the hospital. It was very stressful, but it was a peaceful stressfulness because it became so normal. You know how to navigate in that space. As a child, you get used to that level of awareness. Knowing that at any moment in time, this can change. That made me very adaptable, maybe very quiet as well. I kind of stayed in the background, just not to cause additional ruffles. Now that I’m a father it’s mostly an awareness thing that I’m much more mindful of that when I was a kid growing up in a household.

KA: Why should individuals living with SCD practice emotional and mental wellness as much as physical?

TU: Because of all that they go through. Having those skill sets and being able to process through the emotional traumas and what comes with the sickness, the pain. You could see the impact that this disease carries; so being able to transfer all that energy into something positive. And having those positive means when it comes to your health and your fitness, it gives you an outlet. So it’s imperative for overall well-being . 

KA: How has SCD changed your perspective on fatherhood.

TU: I have three boys. She [my wife] doesn’t have the disease; however, she does carry the trait. So it’s not fully out of my lineage. And my boys have the traits as well. As a father, my boys are six, four, and eight months, but I know that at some point in time if they so choose to get married, and they find their mate, that’s a conversation I have to have with them early. It’s very hard for them to understand what it’s like for someone growing up with sickle cell. They didn’t see it as much. They see their aunts now, and they’re in a much better place. As a brother?, I know the pain, I know what it felt like to be in the house with this. So I have to convey that to them at an early age. 

KA: Why should the general public know about the existence of Sickle Cell Disease if they don’t already?

TU: Ignorance is not bliss. We tell ourselves that sometimes but in actuality, ignorance leads to suffering. Those walking around with traits, their life can be changed in an instant. It could be a one night stand for all you know, and you end up having a child with a person who has a chronic disease like sickle cell. You didn’t plan for that, but she didn’t know about it either. She didn’t recognize the severity of what could potentially happen. It’s not just that act at that moment, but it causes ripples later. So the awareness part of it is key because it allows everyone to be on the same page. I have plenty of friends who are in African or black communities that have never seen a crisis before. Have no idea what it’s about, therefore it’s not very real or tangible until they talk to somebody who also had it, or been in a scenario with it. So I guess it’s the sharing of the stories. [If] you want people to buy-in, you have to have a story attached because it’s the story that captivates and gets someone willing to do something. 

KA: Why is it important for others, maybe like those in your line of work to partner with Crescent or grass-roots health organizations?

TU: Light has to be shown. If there’s no light shown on it, it stays in the darkness. And these things get swept under the rug. Many people are suffering regularly and most people just don’t know. But they’re looking for direction, ‘where can I help most right now.’ You have plenty of willing hands, willing souls who want to do something. So partnering with Crescent to bring more awareness to the community, allows for more communal health. Because I think we all want to survive and to do our best. Not only to survive but to thrive.

Coach T is a reminder that health wellness is more than skin deep. Our wellness depends not only on how much we can bench press but our mental fortitude and stability. His work for the SCD community is not dependent on his familial ties, but his strong passion to evoke change in the community, to do something for someone other than himself. To learn more about Coach T and TruBody Wellness visit his website here and check out his work on Instagram here. And to support our work, make sure to donate to the Crescent Foundation here.FacebookTwitterEmailLinkedIn

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