“She will not live long, she might die tomorrow. Don’t touch her! She’s a sickler”. These and many more are the usual words of stigmatisation I get as I grow up. I was born as a Sickle Cell Disease (SCD) patient. Words are not enough to explain what I go through. Of course, you read it on papers. They talk about it during seminars. Your teachers explain it in classes. However, you cannot understand a bit of it until you or someone close to you is involved.
From the periodic pains in your bones to the societal stigmatisation, life as a warrior is not easy. And when crisis hits, it seems like the end of the road. If I had to describe it, it would be like repeatedly being stabbed with a butcher knife in the same spot, nonstop. The thought of understanding the fact that you are going to live on drugs till you exist no more is enough to weigh you down. Even when you sneeze the first question people ask is “have you taken your drugs?” And when you try to do what others do, everyone starts reminding you of your genotype.
But do I really care? No! In fact, what has been of great help to me is my refusal to allow people’s pity for me. I refused to receive pitied love. I got disgusted when people became nicer to me just because they found out I have sickle cell anaemia. It is better you do not like me at all than for you to pity me. Your encouragement might help but your pity is so disgusting. We need love, not pity.
Of course, there are many times I had thought it would be better to end these sorrowful pains. There are moments I thought it would be better not to be seen as a burden to my family and friends but few things keep me moving- the encouragements and the unending love I get from my parents and sisters also the words my doctor said to me “Maryam,you have a good disease” because you wouldn’t know unless I tell how Special I am, more importantly, HOPE.
Yes, hope in the face of uncertainty. Hope in the face of unclear future. Hope in the face of difficulty. Even though I may stumble along the way, in myself I shall always believe. And that I may sometimes have weaker feet, I will never retreat.
You won’t die. You will surely survive this”. These are the frequent words of my father anytime I had to be their guest at the hospital. He would carry me on his back and kept reminding me how I reincarnated his grandmother. I miss those words today as he’s no more with me. However, the thought of these words of encouragement are enough to keep me going.
I was born with Sickle Cell Disease (SCD). SCD is a blood disorder that affects the haemoglobin, the molecule in the red blood cell that distributes oxygen to other cells throughout the body. SCD is hereditary. Each of the parents is expected to have 50% of the trait. It doesn’t afftect any of my parent nor my siblings. I was just chosen by the battle, maybe because I’m strong enough.
I used to be shy about it. I used to hate telling people my genotype. The way people look at you after the announcement is enough to keep you on sobber mood throughout the day. However, I realised the earlier you let people know who you are, the better it is for you. At that point, you know your real lover and those once faking it. I don’t get it. Why will you want to hide who you are from people? You are did not make yourself as such. Those who hate you for who you are can do themselves some good by hugging the nearby transformer.
As an SCD patient, what pains you most is the fact that you have to appear like someone who can only do little. You cannot go swimming with your friends as you wish. You go to hospitals like you go to the supermarket. You cannot make some decisions on your own. People keep reminding you of your genotype when you want to act normal.
Believe me, you won’t want your kid to have a taste of these. You might have enough money to spend on hospital bill but please, pity the live of the innocent kid. Just a simple blood test will go along way.
To those of us fighting the SCD battle, just know the battle is not yours, it only chose you. And as you continue the fight, bear it in mind that self love and positive attitude go along way. Everything might be tiring but when you realise the love God, your parents and your true friends, you will move mountains.
As for me, I have decided to take it upon myself to me happy. Afterall, when life throws lemon you make lemonade. That’s the spirit!
That is my story- the story of positivity. The battle has chosen me and I am ready to take on the fight. Do not pity me, because I’m a WARRIOR!!!