Creating Memories of the Important Things in Life

Life with sickle cell disease doesn't have to be the most prominent memory

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by Dunstan Nicol-Wilson |

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I can be a slow walker, which is controversial for someone who grew up in the city. The hustle and bustle of city life dictates that somebody, somewhere, is in a rush to get to where they need to be.

It’s not that I’m incapable of walking faster, although sometimes my knees give me problems. But as an adult, I have realized that things are often more easily appreciated at a slower pace.

As I walked under the starry Mediterranean skies during a trip last summer, I slowed down to take in the moment. My friends thought there was something wrong with me, but I had just wanted to fully appreciate my environment and be present. It was surreal to think that I was traveling to places I could only dream about as a young kid with sickle cell disease in South London.

As a child, every time I traveled, I seemed to experience a pain crisis. But in that moment during my recent trip as an adult, I was crisis-free. I could fully appreciate the freedom of walking along the beach under the stars.

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Familiar themes

Last week, I binge-watched a Netflix series depicting a real-life romance, called “From Scratch.” The plot also involves grief, an emotion I can relate to. Mostly, I identified with the need to appreciate life more because all things must eventually come to an end.

Having a chronic condition like sickle cell means I am very aware of the finality of life. Each moment matters. Some crises feel like I’m walking a tightrope between life and death, between lightness and darkness. The cold, painful, and isolating embrace of a sickle cell crisis highlights how inevitable this dark reality is.

This is why I cherish the moments when I can do something I love pain-free. New experiences have great value to me, such as exploring new places, meeting new people, trying new foods, and the list goes on. Each experience is embedded in my mind to remind me that I have lived, and continue to do so.

As I grow older, I want these memories, not others, to take precedence in my life. I don’t want to reflect on my life and think only about sickle cell and pain. I don’t want to think about what sickle cell has taken from me. Instead, I want to look back at life’s memories that I have because I slowed down to appreciate things.

These are the memories that capture the beauty of life as it should be. They show that I was here, I lived, and I loved.

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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