I’ve always been a little obsessed with having a great quality of life. I guess it makes sense considering I was told from a young age that my life expectancy and quality of life would be low.
It also makes sense then, that I’ve always been precious about how I spend my time, especially the older I get. That’s why I gratefully celebrate every single birthday I have, because aging is a privilege that few recognize.
The year was 1990, and we were living in Hamburg, Germany. I was only 3 years old then. My parents tell me this part of my story as I don’t really remember any of it.
Apparently, I had an unexplainable, persistent stomach ache. When the doctors eventually came back with a diagnosis, they said, “Your daughter has sickle cell anemia, the most severe form of sickle cell disease.”
My parents were devastated. My mum cried the whole day and night after the diagnosis.
Originally from Sierra Leone, West Africa, they had only heard and seen nightmare tales of the sufferings and sudden deaths of people with sickle cell anemia (SCA).
Based on what they knew then, my life expectancy was set at 21 years, while my quality of life was expected to be interrupted by frequent hospitalizations, looking malnourished, and being ill all the time.
The diagnosis truly took my parents by surprise, because they never knew they were both carriers of the sickle cell trait until I showed up with the full-blown condition.
SCA is an inherited blood disease that causes red blood cells to be sickle- or crescent-shaped instead of round. These sickle-shaped blood cells do not live as long as healthy cells and can get stuck in blood vessels, leading to chronic anemia and oxygen shortage as the blood flow is obstructed. This obstruction is known as a vaso-occlusive crisis, or pain crisis, and can lead to severe joint pain, vital organ damage, and even death.
Looking back on my childhood in Germany with SCA, all I remember are the rules I had to stick to, to avoid being hospitalized, and being raised to teach others around me about the illness to foster awareness, acceptance, and critical support when needed.
Sorrowful ‘early teens’ into joyful ‘late teens’
I feel like I went through a lot of my early teen years crying. I didn’t have it in me to be rebellious, so I reverted to tears — tears of frustration, tears of isolation, tears of pain.
I was hospitalized more often than my peers because of SCA. I was the only black girl in most of my school environments, desperately trying to fit in. Yet, I wasn’t able or allowed to participate in those status-affirming sleepovers or class trips because of the risk of me getting sick, or worse —wetting my bed because of my required high water intake, was too great.
Thank God, life started improving for me once I overcame the bedwetting, found my tribe of friends, and surrendered to the fact that I wasn’t going to follow fashion and have my midriff on display for multiple reasons.
Being hospitalized wasn’t as depressing anymore, because I had friends to visit me and to look forward to hanging out with when I was discharged.
Then came my A-level years and getting my driver’s license. Those were some of the sweetest years of my life. They combined my love for learning, the freedom from serious responsibilities, and the pleasure of being permitted to drive my mum’s car and stay out until late.
I felt alive. I felt normal. I felt like I finally belonged. And then, my family emigrated to the UK.
Source: Medical News Today
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