#MySickleWarrior: Never a victim

They say friends are the family you choose and for me and my best friend, that’s so true. I’m the youngest of three with two older brothers but it’s only blood and DNA that stops my best friend from being my sister. We’ve been friends for over 20 years and we have literally been through everything together. From going through puberty, to completing education, to having children and finally to today as we try to navigate being mothers and living our dreams at the same time. There’s nothing we haven’t experienced side by side and Sickle Cell has been a big part of that.

My earliest memory of Sickle Cell was when I was around 6 years old. I remember it was a warm Sunday afternoon after church and my mum told me that we were going to see my bestie in hospital. When I got there, I barely recognised her. She was unconscious with tubes coming out of her body. Wearing nothing but a large nappy. The memories are fuzzy, but someone told me “Say your goodbyes now because she might not make it.” I don’t know if any words actually came out of my mouth, but I remember the tears coming down my face…

Some weeks later, I was back in church sitting at the back – probably misbehaving and my bestie was called to stage with her mum to share her testimony. There she was, in her Sunday best, her hair fresh in two bunches, looking shy on the stage. The pastor spoke of how she had overcome death when the odds were against her and survived. When I was old enough to understand, I found out that she experienced complications in what should have been a simple gall stone removal procedure and was in a coma after a blood transfusion had gone wrong because of her sickle cell status.

When we discussed this story later in life, she said she could vaguely hear our voices while she was unconscious. I can’t imagine how she must have felt on that hospital bed, alive on the inside – hearing that your body wasn’t going to make it.

In a way, she has painted sickle cell in an unrealistic light, because she always refused to be a victim. As we grew up, there’s nothing that we didn’t do. I was aware that there were boundaries but she would hate whenever I reminded her. In the summer holidays that I would spend at her family house, she would always roll her eyes when I asked her if she had taken her folic acid tablets that day. It was like sickle cell was our little secret, because she didn’t want anyone else to know and incorrectly judge her or view her as a victim. So the most simple of phrases in a crowd of people would mean nothing to them but would cause me to spring into action. “I’m feeling cold” – she would say. Which to me meant, OK time to wrap her up warm and get home as soon as possible before the cold enters her bones.
Once we got to our teens, it would annoy me how tactless people were. Sometimes strangers would come up to us and ask her “why are your eyes yellow?” She would normally say something funny and unique but it made my blood boil that people were so brazen to come and ask a question. I’ll never forget the hours on the phone we would debate back on forth on whether or not it was the right time to tell a close friend or boyfriend at the time that she had sickle cell.

As we started to get more image-conscious, as we got ready to go out, our standard conversations would be - “Is this skirt too short? Do these heels go with this outfit? Do my eyes look really yellow today?”

For me the hardest part of growing up with a best friend with sickle cell, is the helplessness I would feel when she was going through a crisis. I could visibly see her in pain but knew that there was nothing I could do to make things better.

I’ve always been a nurturer by nature and so love to be able to help my friends out – but knowing I would just have to wait for the moment to pass was difficult for me to bare. I’ve spent many hours by her bedside in hospital but there was never a part of me that thought she wouldn’t pull through. To be honest, I didn’t even know people could die from sickle cell. Because she has always been so strong. And even when seeing her in pain made me sad, I always had to put on a brave face because she was doing the same thing.

I remember being in complete awe of her as she gave birth to both of her children naturally with no painkillers. After just 8 hours of labour I was begging for an epidural because the pain of the contractions was way too much for me to handle!

Now we are much older, and after going through so much together – I honestly believe we have a spiritual connection. We have never physically lived close to each other but we have always been close. Now we live in two completely different continents but I always get a bad feeling deep down sometimes if I haven’t heard from her in a couple of days. It’s as if a part of me knows that she’s not feeling well at that moment and is going through a crisis. And when we finally do talk, my suspicions are always confirmed when she says “Hey love, just getting over a crisis but I’m feeling much better.”

The saddest part is that I feel like these crisis have begun to happen more and more frequently. But I always know that she will come through on the other side and get straight back to work like nothing has happened. The battle may knock her down temporarily, but like the warrior she is, she jumps straight back up after and is ready to face the next one.

My best friend is literally the perfect example of resilience. Despite the life-long battering her body has taken, she refuses to give up. She doesn’t even wait until she’s back at 100% health. Once she’s 70%, she’s up and back to the grind.

Honestly she’s my biggest inspiration. And I’m proud to say I know her. Sickle cell is a part of her - yes, but it doesn’t control her or limit her dreams in any way.

When I see my life, I don’t ever see it without her in it. I can’t wait until we celebrate our 80th birthdays with our kids and grandkids around us.

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