Living with sickle cell…
It might not be labelled cancer. It might not be diabetes but it is a disease. It is affecting people, young lives and it’s a struggle living with it.
It is Sickle Cell Anaemia.
Personally I think you haven’t met with pain till you’ve suffered from sickle cell and you lay there helplessly with not a drug in sight strong enough to cure or ease your pain.
Have you ever woken up and your biggest decision of the day is whether you want to continue living or not because your pain is so unbearable and you do not wish to prolong your sufferings anymore?
Be In The Know...
Have you gone to bed well and healthy only to wake up few hours later with the most excruciating pain ever throbbing and gnawing at every organs in your being?
How many times have you asked God to take your life because your hope and faith ran short? You light at the end of the tunnel wouldn’t come on? Or you just feel there’s nothing left to live for? How many times?
Try and Understand
Have you laid in hospital bed for weeks, in pain, life at a standstill, crying nonstop as pain slowly gobbles you away?
Ever made plans, packed your bag, called your friends, bought your tickets and all but you couldn’t make it because you went into crisis few hours before your flight and ended up at the hospital?!
Ever woke up and even to dial an ambulance becomes an impossible task because you’re in so much pain and you can’t move, not even a finger?
Ever seen tears in your mother’s eye because she can’t ease your pain and the only thing left for her to do is to sit and blame herself tirelessly as you wail helplessly in intense aches and pain?
You go through one blood transfusion after another and the back of your hand is full of scars from countless needle drills from nurses and doctors trying to find your veins.
You have to watch the type of activities you participate in constantly, watch what you eat and you don’t dare miss a day of your penicillin and folic acid.
Your life is no longer yours, well if you’re brave enough… you screw the odds and dare to have a life!
In severe pain, you crawl to the door because you live alone and you need to let the paramedics in. Do you understand that level of pain?
You walk into gathering and you have people asking you why your eyes are yellow? It gets tiring and exhausting.
You’re looked upon as an invalid and a disabled person to the point where everyone worries about you standing for a long time or not dressing warm enough in the cold or even not eating right or simple thing as not drinking enough water.
A Soldier...a Fighter...a Survivor!
Have you tried saying the Lord’s Prayer and you totally forgot how to? A prayer you learnt since you were 7 but in time of distress and pain you can’t even remember how to say the first few lines so you ask your teary-eyed mum by your bedside to do it for you. Yea imagine that.
Does the mention of word spleen scares the shit out of you? Well to me it does.
Your handbag, purses and wallets looks and smells like a walking pharmacy because you don’t know when next that cruel pain will make a comeback. You never really know and there’s nothing you can do about it.
Sometimes we suffer stunted growth, big protruding stomach and constant loss of weight but you don’t understand and you will want to ask me why am I so skinny or if I’m pregnant or where does all my food goes. Stop!
You have to tell your university or work place that you have been admitted….again and again and again and most of the time no one believes you. You’re on your own. Exhausting!
A Soldier. A Survivor
Some days I will chose to act like a soldier and drag myself out of bed only for you to see me and assume I am lazy or I do not have a care in the world. You look at my life and made your judgements. Walk in my shoes please and tell me how that feels.
What do you know about morphine and painkillers? We know all the names and their after and side effects. Yes a sickle cell patient lives on painkillers.
You look in the mirror sometimes and all you see is sickle cell stealing the melody from your life and you’re wondering when the music is going to stop. Washing away your sense of accomplishments… One raging pain at a time.
|A Fighter and a Survivor!|
You just have to be a soldier for yourself. One strong, hopeful soldier.
You walk into your local hospital and the doctors and nurses know you by name, even the cleaners and chefs know your specialties. Hospital is not home and no one should be that frequent there.
Some days you wake up and you’re fit for nothing. You’re not ready for the world because your breathing is not right, or your ankle hurts so bad you can’t walk, or sometimes you’re tired, just really really tired but you won’t understand.
You watch your peers drop dead, one after the other and you’re thinking, am I next?
You can’t live like everyone else, there is a limit to what you can do, the distance you can walk and the places you can go and how many kids you can have. Your existence is practically limited.
A Fighter. A Survivor
Pray it’s not the two of you with the disease in the same family because then you have to watch the other in pain and guess what You can’t do anything to help them and the worst part is you knowing the severity of the pain she’s going because you’ve been there. A mother’s tragedy.
Woe betide you fall in love with someone who has sickle cell. Then you have the heart throbbing decision of whether you chose to be in love and have no kids or break up and find someone else.
It doesn’t end there, you have to deal with people who do not have a clue what sickle cell anaemia is so they think it’s contagious. They keep away from you and treat you different.
You have employers who think Sickle cell anaemia automatically renders you unreliable therefore you become unemployable…you’re already at a disadvantage in life because of something that you didn’t chose, something you have no say in, something that was genetically imposed on you.
But most time we don’t complain, we go on steadily, fighting every pain and beating every symptoms because we know that is our life now. We learn to live with it and manage it. Most people do not understand what it takes for a sickle cell patient to go through each day. Most people do not understand and frankly I do not blame them. Much attention is not given to sickle cell patients, neither is much sensitization given.
You fight for each day and each hour of your life because you never know when the next crisis (sickle cell pain) will hit you. But no one understands.
This is not a pity party. We are not crying for help. We do not want you to feel sorry for us. We are not asking for your tears. We want you to understand, we want you to be considerate. We want you to be enlightened.
Be nice. Play nice. Life is hard already, we do not need anyone to make it harder.
Personally I have the utmost respect for every sickle cell patient out there. You’re a soldier. You’re fighter. I know what it means to get up and find meaning in each passing day. Keep going and screw the odds.
Even if we have to do this daily, we will because it is our life and we have accepted it. No cure but with the help of God, we are managing just fine.
We are going to be just fine
And when you feel the storms of life assails remember, God never gives you a load that you can’t bear.
Again I say…this is not a pity party!
With this, i'll like to say thanks and express gratitude to all the people helping us, from the doctors to the hospital chefs, from our parents to relatives, to our friends and to every passing stranger who have rendered help.
We say thank you and we do not take you for granted.