INTERVIEW: I Didn’t Allow Sickle Cell Kill My Dreams, Says 22-Year -Old Corper

Anuoluwapo Olufowose is a graduate of Early Childhood Education and Care from the University of Ilorin. She is   currently a member of the National Youth Service Corps serving as a teacher in Lagos State. The 22-year-old spoke to THE WHISTLER about her Sickle Cell challenges and her strategy for survival.

 What Is It Like Being A Sickle Cell Patient?

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Being a sickle cell patient in general for me has become a norm. I have crisis once or twice every month.   It is something that I am very much accustomed to.  I have known of its tricks and it does not take me by surprise anymore. It has become a part and parcel of my life.

Whenever I am feeling strange,  I know the reason and know how and what to do about it.

After 22 years of living with sickle cell,  I live with the knowledge that I am a carrier of the disease,  it is part of me already,  just like my skin.

What Has Been Your Survival Strategies?

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I cannot say exactly what my survival mechanisms are but I have two things that keep me going. God and my passion.  I know that every day I wake up,  means that God is not done with me yet and he still has a plan for me. I get empowered by that. The second is my passion concerning the goals I want to achieve.

Those two things keep me going and no matter how many times I have a crisis in a month, I just know that I have a dream that is way bigger than Sickle cell disease that I still need to achieve.

I try not to allow the sickness to keep me bedridden for long. I have to be back at my feet and do progressive things toward my dreams.

Can You Share With Us Some Of Your Passion And Ambitions?

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After doing my Senior Secondary School Certificate examnination, I wanted to study Performing Art at the university level because I have a passion for acting and filmmaking a lot. But I never got approval from my father.

 My mum is supportive but she is always worried about my health.  So, I ended up studying Early Childhood Education and Care because I love kids. I  loved every bit of the course and developed a strong love for it and  I will be pursuing a Master’s degree in Child Psychology. 

I still do have that passion for acting and filmmaking but at the point when I started knowing all it entails and the film industry,  my passion drifted to more of filmmaking and directing. At one point, I went to a Cinematography school and did some online film courses, and got certified.  So, these dreams that I still have and I believe so much in,  I am working on them and I believe it will come to reality someday. I also look forward to winning my own AMVCA award as a filmmaker.

I am a fashion lover too;  I also want to own a cosmetics brand which I am taking a step towards too.

I am not giving up, I believe that I can achieve anything regardless of that reminder about my health and my ambition is what makes me strong and be on my feet each time I am sick .

How Was University Life For You?

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Apart from 100 and 200 levels, I was always falling sick.

There were days when I had exams and I would be in crisis and I will have to inject myself before I can go for my exams and that act alone makes you feel dizzy. But I had to get up and go for exams.

There were days also when I had to go for my injection at the clinic and I will leave the clinic and go straight to the hostel and prepare for lectures or examinations. Sometimes when I have pain in my joints and I still have to go for a presentation.

And sometimes I sleep in the clinic for days and at a point, I start feeling like I was a burden to people especially my cousin who used to stay with me at the hospital, give me food and carry my bag.

I recalled when I became 20 years old in 300 level and crisis started occurring more often, I missed a whole semester. I was in the hospital (UITH) receiving oxygen,  drip, blood transfusion and treatment in general and I had a project going on. I had group work and assignments classes to attend but I was absent because I was seriously ill for a month. However,  I am grateful that some course mates helped me with that and gladly,  there were some presentations and project that were postponed until the following year.

I got better and was able to be present for all the activities I would have missed.  Thank God!

Because of how severe my illness was,  my parents had to travel down to Ilorin.  My mum traveled down from Lagos and my dad traveled from Abuja to Ilorin by public transportation,  it was very surprising.

That one-month stay in UITH was traumatizing for me as well.  I was in the emergency ward every single day until I left that ward, someone always died, and at least two patients to my side died. A patient opposite me died too,  it was very traumatizing,  at a point the drip was not going through my veins, it was leaking and they had to remove it.

It was not easy but God and the support from everyone kept me going, made school life much easier. I came out alive and living life.

We Used To Hear That People With Sickle Cell Die Before They Are Adults. How Were You Able To Cope With This Notion?

I had lost my friendship with a guy due to this myth.

We started talking and he realized I am a  sickle cell patient,  he said he cannot have any sort of relationship with a Sickle Cell person again because he once took care of a friend who later died in his early 20s. He said he did not want to relive such experience by starting a relationship with me.

However, I have been coping well.  I do not buy into such a myth because I know that is not going to be my fate. Sometimes,  I tend to get other information that it is at the stage I am, in my early 20s that SC warriors have more crises and are prone to die. It is not a soothing information to know as SC warrior myself but I don’t dwell on it or have that thought that I may die soon. I just allow it to be a myth, that is how I cope with such information because I believe I am not dying anytime soon.

I am overcoming that stage. I have escaped the clutches of death twice in my 22 years of living by the grace of God.

 What Are Your Challenges As A Sickle Cell Patient?

Having blood disorder in itself is very challenging. The number one challenge as an SC patient is that one tends to have a crisis anytime,  anywhere, and any day,  mostly at night.

When I say anywhere,  I mean it could be in public or at the comfort of your home and also the crisis can affect any part of one’s body. We practically live on the edge. One has to take extra precautions every other day.

Another challenge is the stigma one gets from people. Sadly, I have come across doctors and nurses who do not know how to address SC patients properly. They address one with words like” Sickler” I mean,  no SC patient should be addressed that way.

One time, I went to a clinic, and the way the nurse spoke to me was ” You again, you are here again? ” When she treated me and gave me an injection, I did not know how but my butt was swollen and after that day,  I resolved within me that I was never going to the clinic whenever I have crisis again especially if I can handle it on my own. So, I learned how to inject myself.

Since I learned how to inject myself, I stopped going to the clinic and I can say that I have been more self-sufficient since then and I can take care of myself.

People also tag you as being lazy, weak, too skinny or your stomach is too big. And questions like” Ahh! Why are eyes so yellow? ” and many others. That tends to mess up one’s self-esteem and mental health.  It is challenging to have to deal with your physical health and your mental health is at stake as well.

Another challenge is people underestimating you. You tell someone this is what I want to do or achieve and you get that, Ahh! can you do that?  Your health here,  your health there! ” They tie everything to your health and end up underestimating your power and ability to achieve certain things.

I am very much underestimated even by my parents. If I tell them  I want to do this,  they will be like ” Hee!  Anu, are you sure you can do this? These kind of things can kill a person’s dreams and aspirations.

In addition to that, people tend to call you a drug addict, because you are always on drugs.

And sometimes, it gets to a point people would start thinking you are lying about the way you feel health-wise.  I do not know,  but I want to believe it happens to every sickle cell patient. We could be in crisis and we are working,  walking, and standing.

Recently, I was in crisis for four days straight.  A day out of the four days,  I was on a drip, and even after the drip,  I was still in crisis but I was still going to work and I was still standing to teach.  So you tell somebody,  you have pains in a particular place in your body for days, but people do not believe you because you are still active regardless of what you are going through. You have to carry on.

How Are You Tackling Such Challenges?

I want to consider myself very lucky because I am surrounded by people that love and understand me.  That is one aspect that strengthens me to overcome most of the challenges I talked about.

Even if I do not get support in a particular place,  I have other places I can turn to for support.

And on days when I wake up and Sickle cell disease wants to hold me down and I get up and people start saying things to me,  I tell myself that they are not in my shoes,  hence,  they cannot understand. I try to find solace in the love of God for me and people around me who love me and I can also be strong on my own.

I have learned to be more patient with myself and not allow what other people say to get to me especially now that I know better because 80 percent of people might not understand and that percent is not the people I care about so I just shield myself against what they think or say about me.

What Are Some Of The Lifestyle Changes You Have To Make To Stay Healthy?

One of the lifestyle changes I had to make is always taking my medications. When I was much younger and I did not know what was going on,  I joked a lot with my medication but now I know better and I do not joke with taking my drugs. I take care of myself to my best ability.

 I am supposed to take a lot of water,  eat healthy and take a lot of rest but I cannot say I do all those as required. I try as much as I can to take a nap when I am exhausted and drink a lot of water.

Do You Think The Government Is Doing A Good Job As Regards Treatment Of SC Patients?

As I said before, Nigeria is not a bad place to survive SCD.  While in school,  I was admitted into a government-owned hospital, the University of Ilorin Teaching Hospital (UITH),  and I must say, I received good treatment and attention from the medical practitioners there. However,  the government can do more and better. Most SC initiatives and NGOs are self-funded and I do not think they get funding from the government.  I think the government can provide better health facilities not just for SC patients. Nigeria could do much better in the health sector and also provide support to NGOs that carter for  Sickle Cell Disease patients in the country.

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