For World Sickle Cell Day, Read About My Reality
World Sickle Cell Day is upon us tomorrow, June 19.
Following are memories that illustrate sickle cell’s ugly grip on my reality.
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The year was 2018 and the British Society for Haematology Annual Scientific Meeting booked me to speak about sickle cell pain management. I live in England and the conference was in Scotland, so I flew for efficiency and to save money.
I arrived at the airport feeling fine and easily arrived to my departure gate. Shortly after taking off, though, I became severely unwell and pain pulsated through my entire body. There aren’t enough words in the English language to accurately describe my torment. What I can say, though, was that it ripped through every fiber of my body — definitely the worst sickle cell crisis I’d ever endured.
The flight was only an hour, but I needed to persevere through absolute agony throughout.
Once we landed in Scotland, I got to a hospital that admitted me straight into the ICU. There was no way I was going to make it to the speaking engagement. I remained in the hospital at Glasgow for three weeks, alone, as I have no family or friends there.
This experience scarred me. I have flown in a plane only once since this happened. I am genuinely afraid of traveling now. Also, if I am to fly now, I must fly with supplemental oxygen, which makes arranging a flight very stressful, especially if it is long haul.
I need only to think about this incident, and the mental pain comes roaring back.
Sickle cell is starting the day feeling perfectly fine but ending it in crippling pain in ICU. Sickle cell is agreeing to plans and having those plans thwarted by a crisis.
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Since I was a little girl my dad would take me to Notting Hill Carnival annually. So, it is no surprise that when I became an adult and made friends with other people who enjoyed carnival, I participated in it, too.
It is one of my favorite times of the year. I love how I feel in my costume, on the road and dancing the days away to soca music. Unfortunately for me, in 2017 I suffered a sickle cell crisis after the party, and then again in 2018 and 2019.
I tried to alter how I experienced carnival in the hopes of preventing any crisis. I stopped attending pre-parties (known as fêtes) and eventually stopped going to both days of carnival, choosing to attend just one day. I asked bands I played mas with to allow me to sit on a truck and I brought walking aids. But it was all to no avail. I still experienced crises after carnival, and they were worsening in severity — my body could not handle it.
So, I had to forgo carnival altogether in 2019. Who knows? Maybe in years to come I will be able to enjoy carnival again. But not yet.
Sickle cell is jumping through hoops of fire to maintain hobbies and a social life while you feel your body physically disintegrate from avascular necrosis.
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Sickle cell is the growing difficulty of everyday tasks that were once easy for you.
Sickle cell is trying to live without getting thrilled about anything for fear a crisis will steal away all excitement.
Sickle cell is knowing that some medical personnel might treat you horribly.
Sickle cell is struggling to find the words to explain your pain to any who listen.
Sickle cell is battling the fear of being unable to physically and mentally endure another crisis or ICU admission.
Sickle cell is navigating life’s assault course all just to make your days as enjoyable and meaningful as possible.
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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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Comments
Stella okolobah
Been a mother of a beautiful sickle cell daughter is learning to accept peoples blame that you should have known better and that you are paying for what you yourself brought upon yourself even when you try to explain that it was a laboratory error that caused it all.
It is looking at every lady that passes by on her two feet and wishing your daughter could be able to move again like that and not suffer the stigma of been called a deformed child because of early avascular necrosis
It is praying every minute and if you are a Christian like me,calling on God every minute and hoping desperately for a supernatural cure while still seeing and living the harsh reality of sickle cell.
It is seeing your daughter almost always in pain and knowing you can't do much to help her.
It is hoping for the longest time for someone to comfort you and tell you there is hope but eventually,you cease to look for understanding and support and just carry your child one day at a time.
It is looking at your daughter everyday and praying to God that she does not lose hope and joy and attempt to commit suicide someday.
It is long nights of tears and sorrow and never having a normal life.
It is not really knowing or remembering what it feels like to have a normal family because everyone is traumatised when sickle cell crises occur.
It is the state of near madness one finds oneself perpetually in due to the continual seeing and partaking in the pains of a sickle cell child and the effects this has on the psych.
It is not taking holidays by oneself because your child may fall into crisis in your absence.
It is fearing your child may be bullied at school and lack friends due to her condition.
It is praying that she finds someone of the opposite sex who will love and accept her as she is and not oppress her because she has suffered enough and deserves to be happy in life like everyone else.
It is hoping and praying that family members stand with you through it all and even though they may get tired of your trials,they try to still exhibit compassion and stick it out with you and your child.
It is long years of blaming and fighting God for the cross he put or allowed on your child,and then finally settling down to help your child learn to live with the sickle cell condition
It is hearing that stem cell therapy could cure sickle cell and experiencing tremendous joy but having it crushed when you hear the huge amount it will take and understanding that it is the cure for the very rich.
It is been happy with good news and almost simultaneously losing it at the sight and sound of your child in crisis.
It is looking at your colleagues and knowing you want more out of life and can be better and do better but feeling no inner drive and motivation because your life revolves around the happiness of your child because if they are not happy or settled, then you are not.
It is seeing other parents traumatised with the reality of sickle cell and offering a word of hope even though you too are hurting inside.
It is seeing other children and people living with sickle cell and wishing that if you could,you would just wipe away every trace of sickle cell from their life and make them happy.
Finally through it all,it is a condition you would never wish even on your enemies .It is something that when you look back on,you can't but thank God for it all because it is by His grace that your child and family are pulling through day by day. You observe that you are a more compassionate person and you appreciate life more. You tolerate people more because you understand that it is not easy to carry an infirmed family member. Life is hard enough without adding sickle cell to it. As we stand with our children, with our brothers and sisters all over the world living with sickle cell,we say we love you all,we appreciate you all,and you are beautiful.
We want you to know that in this struggle,you are the ones that give us hope and the strength to continue. It is because you are not giving up that's why we can't give up. In this struggle,you are the shining light we see. We pray for you and wish you well. Be strong,be courageous, none of this is your fault,you are not alone,God bless you.
Catherine Nambakire
Its nice for us to koin,and the experiences people go through,help us to help our little ones grow strong. Am a mother of two sicklers.
Catherine in Uganda.
Constant VODOUHE
Wonderful article!
Thank you very Mary. You summarize very well the life of a sickle cell people....You will still go to the Carnival
I will be happy to keep in touch with you...
Courage.
Constant at Strasbourg
Angela Thompson
Hi new to the website and this blog... My God daughter was born with sickle cell and I really don't understand or know how to help her. She is now 20 yrs old graduate from high school trying to start her life, career, college and it seems like her body is falling apart. She has been in the hospital more now than her whole life? What's going on? She is so tired and stressed out...everyone else is going on with their futures but she's at a stand still, dealing with sickle cell. How do I help her? Encourage her? Support her? Tell her going to ok? What??
dean
Thanks for writing this. You have open up my wound. I do have a son with sickle cell and I wish that I can could take his pain away. It kills me inside to see him go through this all the time. He is now 32 and I am never prepared to deal with his crisis. They tend to weaken me emotionaly, mentally so to know that someone else understand and can put it in words. Thank you