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.
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.
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.
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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