Survivor Series: Samira Sanusi’s Story
Samira Haruna Sanusi is the founder and president of Samira Sanusi Sickle Cell Foundation, a non-profit organization that aims to create awareness about Sickle Cell Disease as well as provide support to patients living with Sickle Cell Anaemia. Samira Sanusi is the 2nd of 12 children, she is from Funtuwa, Katsina State. A graduate of Business Administration, Samira is a survivor of Sickle Cell Disease. In an exclusive interview with Jaruma Magazine, Samira shares a little bit more about herself, like her love for art, food and the colour pink.
What is it really like being a Survivor?
I feel lucky and blessed. Being a Survivor is not how people romanticize it to be. It leaves lasting effects. Going through trauma can make people bitter and angry. Sometimes I am those things but I have taken my survival as a self-development project. I understand that having survived what I have, sometimes I can be angry and bitter and I may want to lash out, but that’s not all that I am, that’s not all that I want to be. I want to be good and kind. Being a survivor, comes with a certain level of responsibility towards others who aren’t as fortunate as I am. I want to help them however I can.
How Important is the work you do through Samira Sanusi Sickle Cell Foundation?
When I moved back to Nigeria, finally able to walk again after many years, I wanted to do something for other sickle cell warriors who aren’t as fortunate to even have access to basic medical care. So many people don’t know their genotype. I lived with sickle cell for fifteen years without knowing my genotype. After I got cured, I knew that I wanted to be a sickle cell advocate. SSSCF enlightens people about the complications that may arise when they marry without first going for a genotype test. How it could affect the children and the family as a whole. We also have a support group, ‘warriors not sicklers’ which is really amazing because it gives sickle cell warriors platforms to be open about their struggle without judgement. SSSCF has been able to impact on so many lives especially those from low-income families. We provide access to blood donors, medications and hospital bills. So far, we have been able to pay for four warriors who needed life changing surgeries. My dream will be for everyone to get cured but I understand that for many, it is not affordable or accessible so the least I can do is to make life a little bit easier for them.
At a point you had to stop school. How did feel seeing your mates go to school and have fun while you stayed back and just watched?
It was brutal. I was a teenager and it was really difficult for me to accept that life as I knew it, was over; whether it was going to school, hanging out with friends or being with my family. There were lots of sacrifices that I had to make and so much that I had to give up. Most of the time, I was away in a foreign country where I had no family or friends and it was isolating. It’s one of the hardest things I’ve ever had to do but it has also pushed me to explore my strength and capabilities. I know now that it is ok to ask for support while still being able to stand on my own two feet.
You’ve written two books in the span of two years. ‘S is for Survivor’ and ‘I Wrote This for You’ how did you manage to do that?
It came easy. My first book, ‘S is for Survivor’ is literally about my journey with sickle cell anaemia, the complications and my journey through getting cured. It was easy in the sense that the information was readily available. I had journals and diaries where I wrote what I felt. The only challenge I faced was that I was writing about the pain that I felt. Pain that lasted for seven years. There were times when I had to stop, there were moments I didn’t want to remember and emotions I didn’t want to feel. But I wanted to write a book that would impact lives, give people hope, courage and strength. I wanted it to be a call to action for sickle cell in my country and I knew that in order to be able to do that, I needed to be as open, honest and vulnerable as possible.
‘I wrote this for you’, in a way, is still about me; the effects of the experiences I went through and the emotions that I had suppressed in the past. While I was sick, I focused more on being strong for myself and for my family, there was a lot of frustration I had to deal with because I couldn’t just break down and admit that it was hard. Survival can be brutal but you have to find a way to be brave and just do it. What is more important is that we should all be able to tell our stories especially as African women.
Daily challenges you face
Well, I use a walking stick so I’m very particular about scheduling my outings. I have a pillow in my car because I’m short (laughs) and I drive with just my right leg. I get anxious travelling with a group of people because for example if the restroom is wet, it’s a problem for me because if my walking stick slips, it means I also slip. I rarely attend weddings in a place that is far away because it’s kind of difficult to take care of my needs in an environment that I’m not familiar with.
People’s reactions when they see you for the first time.
Surprise. They expect to see someone taller, bigger or bolder but to be honest I’m very shy and I don’t like attention. That was another problem I faced before publishing my book. I had to take time to make peace with the fact that I have to be out there. Naked and vulnerable. It was kind of scary. I’m usually very vocal on social media because I’m more of a writer than a talker so those who don’t know about my physical disability are usually shocked when they see me for the first time, especially when they see me opening my car door. They actually stand and stare. They want to know how I can drive with one of my legs unable to bend. But I’m used to it and I just show it off like, yeah I can do that.
When did you feel the need to write your books?
I’ve always been a writer. When I was younger I used to write princess stories. I can usually only write about what I’m seeing, feeling or experiencing. At first I didn’t know I wanted to write a book, I just kept journals where I wrote what I felt. I shared them with my friends who told me how powerful they thought they were and how I should write a book. As more and more people knew about my story, the need to tell the story became more apparent.
Do you intend to pursue writing as a career?
I think I pretty much have since I have published two books now, though I haven’t had any formal training in writing at all. I’m going to focus more on that this year. Writing is how I pour and share. Sometimes I have to write before I can sleep. It is a fundamental part of me so it is something that I’ll always continue to do.
Who is your biggest fan that you know of?
I don’t see myself as that kind of celebrity. But the ones I know of, I treat equally. I’m the one that feels honoured when people read my books. Sometimes people send messages to me, telling me that they like my books and it’s really amazing.
How did it feel when you sold the very first copy of your book?
Mind-blowing. The first time the books came from the publisher, I held them and just stared at them, unable to believe that words that were in my head are out there into the world. It was incredible. My books have been to places I’ve never even been to. Knowing that people read and discuss my books makes me feel appreciated.
Books or movies?
I like non-fiction. I like stories that either make me feel or make me think.
How many books do you read in a year?
I have no idea. Sometimes I could finish five books in a week and sometimes I could go months without reading a book.
What do you do at your leisure?
That’s an interesting question because I’m a workaholic. I also struggle with insomnia so any free time I get I try to catch up on sleep. But I hang out with friends and family. Recently, I’ve become interested in attending art exhibitions and spoken word performances.
Pink, although you’d never see me wear pink. I just have the accessories.
I love tuwo, pizza, danwake and burger. I’m a foodie so I eat pretty much everything. It just depends on what I’m craving.
Do you like sports?
Well, I did but I never got the opportunity to play because of my health. I always fantasized about playing basketball though.
Future plans for SSSCF
We want to cover more communities and ensure that healthcare is accessible to as many as possible. It’s important that people living with Sickle Cell anaemia have standard health care available to them. We also want to improve our level of awareness and sensitization to have reduced sickle cell births.
What do you think about the future of sickle cell in Nigeria?
I’m glad that awareness about sickle cell has improved but has it really translated to reduced sickle cell births? The future depends on what we do now. We need the government to find a way to ensure that sickle cell births reduces and if possible, stops.
What words of encouragement do you have for sickle cell warriors out there?
When you are going through something as brutal as sickle cell anaemia, I don’t think there is any advice that can make it better. I know that every warrior has heard it all. Sometimes you don’t really need someone to give you advice, you just need someone to listen to you without judgement when you tell them it’s hard or when you just want to break down and cry. My advice to warriors is that they seek support because sickle cell could affect you both mentally and emotionally so you need to have people around you who can support your mental health while you are dealing with your physical health.