Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

All my life I’ve been carried by Grace, and it’s nothing short of a miracle I’m alive today.

Via, David Oletu (DCM)

In response to the Sickle Cell Advocacy Month, ( Sickle Cell Disease | WHO | Regional Office for Africa) We were privileged to interview a sickle cell warrior and advocate, Oche Emmanuel, to build the faith and strength of others across the globe. 

Oche Emmanuel’s story is a testament to resilience, hope, and determination.

Despite the challenges and pain he faces living with sickle cell anaemia and physical impairment, he remains a beacon of positivity and advocacy.

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

Sickle cell anaemia is something I never wished for. 

I wish people would see beyond just the crisis. I mean, the physical pains, and understanding how every episode affects us. 

It takes so much from us every time.

Most times, we do not even get to recover from a crisis attack before another sets in. 

It takes so much from us.

Just as an expectant mother in labour—she goes through pains, but soon enough she gets to forget the pain after beholding her newborn;

but for us sickle cell warriors, we go through even much greater pains and still have nothing to show for it. 

Instead, it takes from us and leaves us empty and devastated, like a woman with a stillborn.

Yet this happens frequently, sometimes twice in one month.

I believe that there are no limitations in life except that we create in our minds.

With or without sickle cell anaemia, the goal is to ‘do exploit’ and make positive impacts on society and the world at large.

In a world where sickle cell anaemia often casts a shadow of uncertainty, Oche Emmanuel stands as a shining testament to the power of resilience, hope, and determination.

With a heart that beats stronger than the challenges he faces, Oche has transformed his struggles into a beacon of light,

illuminating the path for others navigating the complexities of this genetic disorder.

As an Actor, Advocate, and Sickle cell warrior, Oche’s voice rings out with a message of awareness, education, and empowerment.

In this deeply personal and inspiring interview, Oche invites us into his world,

sharing the triumphs and tribulations of living with sickle cell anaemia and revealing the lessons he has learnt along the way.

Join us as we journey with Oche, exploring the intersections of hope, resilience, and the unbreakable human spirit.

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

DCM: Can we meet you? 

Oche: Thank you.

My name is Emmanuel Jacob Oche from Oju LGA of Benue State.

I am an actor, a sickle cell warrior, and an advocate.

Furthermore, I am passionate about advocating for sickle cell for the sake of generations yet unborn, and so far I’ve been making great impacts.

My advocacy has ended incompatible relationships leading to marriage,

and the most I am most proud of was a relationship that literally came to an end just about 10 weeks to their wedding date.

A random friend of mine who has been consistent in viewing my advocacy posts messaged me on a fateful morning,

asking me how genotype compatibility works.

I took my time explaining to him and giving practical examples, and he mentioned that his big brother’s wedding is around the corner,

and he’s sure his brother and fiancee know how important this is. 

I encouraged him to speak to them about it, which he did, and they carried out a genotype test and found out they were incompatible. 

His big brother spoke to me, and I encouraged him to have the test again in two other renowned diagnostic centres near him,

but unfortunately, the results were the same. 

I took time explaining the dangers of taking incompatible relationships to the next level, used myself as an example, and all that. 

Deep within me, I had given up already; I saw every impossibility around calling off the wedding, but it happened. 

The wedding never went on.

I thank God for their understanding, even though it was really difficult for them to accept their fate and move. 

The lady cried herself to hospitalisation, but I’m glad it didn’t change anything. 

God did it, not me, and with the help of God, I hope to take this advocacy to a greater level.

As an actor, I get limited roles a lot, not because I’m not good enough,

but because of my physical impairment as a result of complications regarding sickle cell anaemia,

of which I had an unsuccessful total hip replacement surgery 3 years ago. Therefore, I use extra. 

Regardless of that, I guess I’ve achieved much in 2 years.

My drive, resilience, and determination keep pushing me on my journey to stardom.

The recently concluded film project produced by Ayo Makun (AY), the comedian, is my biggest achievement so far.

My crutches couldn’t limit me; not even sickle cell could stop me during the periods of filming.

I am specifically proud about this because a lot of actors who are doing better than I am in the industry (not anymore though) were dropped during the intensive audition screenings,

and some others were sidelined, but I scaled through and was given the role of a gunman. 

The director cared less about my physical impairment and believed I could. 

That alone was a great encouragement.

So, you can imagine how I got to handle (by acting) an AK47 with my crutches.

I urge you to anticipate ‘The Waiter.’ The movie comes in December 2024 in cinemas nationwide.

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

DCM: Can you share your experience growing up with sickle-cell anaemia?

How did it impact your childhood and teenage years?

Oche: While growing up, I knew there was something special about me, but I couldn’t just place it.

The frequent hospital admissions, the groaning of excruciating pains, missing classes, the protuberant belly,

the yellowish eyes, and the special treatments from family and class teachers made me constantly ask rhetorical questions. 

Sometimes, I got mocked by kids around.

I can’t find anything interesting to say about my childhood as others usually do.

Never played in the rain like my peers or even played football in the neighbourhood, not even riding a bicycle or racing with my peers. 

I was always sent inside the house, and I only got to watch my friends play without restrictions. 

I was deprived of making beautiful and fun memories all because my cells were sickled.

My mom of blessed memory and my elder brother (Sam) of blessed memory too were my encouragement. 

I and Sam lived with sickle cell.

He understood my pain, and likewise,

not until I lost him to the cold hands of death after a severe crisis episode he developed during Mum’s burial. 

It was a great loss to me, but it pushed me to learn and understand more about sickle cell.

I faced quite a lot of stigma during my teenage years, especially from peers,

and it was difficult to put effort into everything meaningful, maybe because I never heard of or seen any sickle cell warrior aside from myself.

And I limited myself to quite a lot of things as a result of daily stigmatization.

Also I couldn’t speak up even when I needed to, and I never had a social life. 

Moreover, I lived in solitude, and it shaped me to not become the better version of myself.

I longed for understanding and a bit of empathy.

Oh! I wish I knew better.

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

DCM: How do you manage your condition while maintaining a successful career? What strategies work best for you?

Oche: I prioritise my health before anything else. 

I keep regular monthly checkups, whether I am feeling good or not. 

Furthermore, I try as much as I can not to miss doctor’s appointments and make sure I do not run out of my routine drugs even as I try to take them religiously.

My pain medications are usually with me everywhere I go to avoid embarrassment in the public space, as a crisis can attack at any time.

Another major thing I also practice is keeping hydrated at all times, as dehydration is a major trigger for sickle cell crises.

I have my water can with me everywhere as I try to maintain the minimum amount of water to be consumed each day as a warrior.

Also, I rest whenever I feel there’s a need to; I put everything aside to rest.

I describe ‘Rest’ as ‘Sit, Drink, Eat, and Sleep.’ 

This has helped me a lot in managing my condition. 

I try never to overwork myself,

but when I do, I take a break, a mild pain tablet, and enough rest to avoid a pain crisis that may likely come up, and I’ll be just fine.

My monthly hospital checkups helped me to know when I needed to treat malaria and other triggers most likely to come up.

DCM: What are some challenges you’ve faced in the workplace and social settings due to your condition? How have you overcome them?

Oche: Being physically impaired can be so limiting, and a lot of people think you can barely do little or nothing on your own.

I am not just physically impaired, but I also live with a chronic illness, thereby attracting sympathy and emotions unnecessarily.

Therefore, I always try to look my best.

I can be very fashionable,

so before you realise I’m physically impaired, my dress sense or style must have drawn your attention,

and I never forget to accompany it with a bright smile. 

My smile compliments my looks at all times. And believe me when I say I’ve got the most beautiful smile.

As I mentioned before, I’ve faced challenges in my acting career as a result of my physical challenge, where I get limited roles and all that,

but my confidence and resilience helped me a lot, plus the fact that I’m good at my craft,

and I try to understand that not all producers would want to twist or improvise an already crafted storyline to my advantage. 

There are times when a crisis brings me down to my feet just when I am about to work on a project, and sadly, I get a replacement. 

No one would want to wait for me to proceed with a movie, especially when I am still on my journey to stardom,

and I understand that time management is an important aspect of filmmaking. 

I am grateful for the fact that I’ve never had a crisis attack during a film project.

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

DCM: How has sickle-cell anaemia shaped your perspective on life and your career goals?

Oche: Sickle cell anaemia is something I never wished for. 

I wish people would see beyond just the crisis. I mean, the physical pains, and understanding how every episode affects us. 

It takes so much from us every time. Most times, we do not even get to recover from a crisis attack before another sets in. 

It takes so much from us.

Just as an expectant mother in labour—she goes through pains, but soon enough she gets to forget the pain after beholding her newborn;

but for us sickle cell warriors, we go through even much greater pains and still have nothing to show for it. 

Instead, it takes from us and leaves us empty and devastated, like a woman with a stillborn.

Yet this happens frequently, sometimes twice in one month.

I believe that there are no limitations in life except that we create in our minds.

With or without sickle cell anaemia, the goal is to ‘do exploit’ and make positive impacts on society and the world at large.

DCM: What message would you like to share with young people living with sickle-cell disease who may be struggling to find their place in the world?

Oche: Always remember that sickle cell is NOT a death sentence. 

Accept who you are and learn to build your confidence; above all, love God and live right.

Learn about this disorder because this is one of the only ways you can actually beat stigmatization in society.

I tell you again, be confident in your own skin; do not give room for body shaming. 

Thank God we do not look like what we go through.

God has blessed us with high IQ and physical beauty; therefore, take advantage of it!

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

DCM: What role has support from family, friends, or mentors played in your journey?

Oche: Unfortunately, my circle is very small, and those who’d really go all the way out for me are quite distant as a result of the fact that I recently moved. 

But regardless, they come through for me the best way they can. 

Shoutouts to Lily Abbah, Genesis Jonathan, Dave Usen, and a host of others.

My support system is very slim. 

We’re humans, and sometimes we get tired. 

Being a carer to a sickle cell warrior can be frustrating, and I understand.

I owe all gratitude to God Almighty.

DCM: Can you tell me about a time when you felt like you were at a crossroads with your health and how you navigated that challenge?

Oche: Permit me to share with you the most recent moment I felt this way.

In the year 2021, when I had my Total Hip Replacement surgery as a result of a sickle cell complication, avascular necrosis (AVN) of the left head of the femur. 

This happens as a result of temporary or permanent loss of blood supply to the hip bone,

causing severe pain and total damage to the hip bone,

and there was an urgent need for me to replace my damaged hip with a metal-like artificial hip bone,

for I have lived with AVN for many years.

After a supposed successful surgery, a few days later I developed a surgical complication of blood clotting;

the operated site got swollen with clotted blood, and in no time I began bleeding profusely.

I was taken into the theatre yet again for washing and restitching.

The pain was unbearable for me. I felt like it was the end of the road for me, but I kept a little hope alive.

Days after the second surgery, the stitches began to break until they broke loose completely, which led to an open wound. 

Just then, my team doctors suggested a skin grafting surgery whereby a part of my flesh would be cut off to cover up the open wound.

At this point, it became traumatising for me. I couldn’t seize from wailing and lamenting.

I literally became a shadow of myself.

So, I wallowed in self-pity, and for the first time, I hated my parents for causing me such unbearable pain and emotional imbalance. 

I was just being carried away by my emotions. 

My parents were lovely individuals when they were still very much alive, and I love them.

Exactly 2 days after the skin grafting surgery,

my team doctors came around and took off the very large torn flesh used for the surgery on my bed space with no sedatives or whatsoever. 

My third surgery wasn’t successful.

I was in sheer despair and anguish.

And I couldn’t find the right words to communicate my pain to God!

I thank the Lord for my friends and loved ones who stood by me at this trying time.

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

And I was being reminded of who I am. Also, I was being reminded of what the future holds for me specifically.

Even though there was no ray of sunshine.

I was reminded of how I used to love life and was encouraged not to give room for the devil to manipulate my thoughts.

Days passed and there was no improvement, and I had to be taken into the theatre yet again for the 4th time.

I was told by my doctors that they’d be taking off the dead cells and tissues, after which I’d be fine and fit to go home.

At this juncture, if I could get my life back again,

I could literally lay my life to get back on my feet again regardless of the constant excruciating pains in my bones.

I signed the consent form yet again and was stretched into the theatre only for me to realise that the supposed implant,

which was to serve as an artificial hip bone, was being removed, and I was left without a left hip bone to date.

Not just that, during the course of removing the implant, it got broken,

and a residue of it as well as a screw was left inside my body till this very moment. I later found out about it on my own.

All four major surgeries took place within the space of 6 weeks. I’ll leave that to you to imagine.

I was depressed because all my aspirations seemed to have shattered. And I lost opportunities I chased even before this surgery experience. 

It was a lot for me to deal with.

I wallowed in isolation until God came through for me.

He helped me to see me the way He sees me, and shortly after, I began to socialise, and then I took to building a career in acting.

All my life I’ve been carried by Grace, and it’s nothing short of a miracle I’m alive today.

DCM: What do you think is the most important thing for people to understand about living with sickle-cell anaemia?

Also, share those common misconceptions you’d like to dispel.

Oche: Sickle Cell Warriors are fragile, but we’re not death-sentenced. 

Stop seeing us like those who might die with just a single push. 

The oldest person who lived with sickle cell died at 94.

We were humans first before our cells. 

We’ve got bills to pay; please employ us.

The battles with sickle cell disorder need a support system; we can’t fix it alone.

And We are not ‘abiku’, DO NOT address us as ‘sicklers’—we consider that insulting. 

We are Warriors, Champions, or better still refer to us as sickle cell patients rather than ‘sicklers.’

Yes, We are most vulnerable during a crisis; therefore, be conscious of the words around us.

Sickle Cell Warriors are not liabilities; we just need a push, that’s all.

We have needs of wanting to be loved and understood by people around us.

We can be fine by 11:30 am and still experience a severe pain crisis at 11:31 am. It takes only a second for a crisis to occur.

Yes, we have outgrown 21 but still experience a pain crisis. 

It doesn’t get better when we grow older; instead, chances of complications are very high, but with diligent management, we’ll live a healthy life.

Sickle cell anaemia is not transmittable. It is a genetic disorder. 

We depend on painkillers for relief. 

WE’RE NOT DRUG ADDICTS!

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

DCM: What are some practical tips or resources you’d recommend for others managing their condition?

OCHE: Water. Make water your best friend. Attribute drinking habit.

Drinking water first thing in the morning and before bedtime helps a lot. 

The effect of water in the management of sickle cell cannot be overemphasised.

Take routine drugs religiously. It is not an easy task; we didn’t sign up for this, but this is what we must do.

Be part of Sickle Cell organisations near you and get acquainted.

This will not only help you build your confidence but will also help you build social life and interactions with like-minded people.

DCM: What message would you like to share with the world during this sickle-cell awareness month?

Oche: KNOW YOUR GENOTYPE!

Learn about genotype compatibility and refrain from incompatible relationships.

It is very ideal to pop the question “What Is Your Genotype?” on a first date.

Always choose genotype over love.

Yes, love is blind, but marriage is ‘the eye-opener!’

Please show love to warriors near you in this month of September and always. 

Gift items like water cans, sweatshirts/hoodies, and anything of help to sickle cell warriors would go a long way.

DCM: Emmanuel, I must say, you have a really amazing personality. This is beyond an interview to me. Your story inspires me. 

I know it takes a lot of guts to share your story, but you did it for the sake of building the Faith and Strength of Others. 

Thank you, Emmanuel, once more. God bless you! 

Oche: Thank you very much.

I appreciate you too for giving me a platform like this. 

I’m honoured.

Also Read: We Do Not Lose Heart: Fix Your Eyes on the Invisible – Diademng (thediademng.org)

Beyond Sickle-Cell: Oche Emmanuel’s Story of Hope & Triumph

About Oche Emmanuel’s  : https://www.instagram.com/emmy_stillsmiling?igsh=bTcxdDJ1amExejlh