For My Birthday, I’m Trying to Focus on Life, Not Death
April is my birth month, and as my birthday approaches, I am deep in thought. My thoughts flash ahead, worrying about how close I am to old age. Similarly, I go backward in time, reflecting on my life and my saga so far, wondering where all the time went.
When my mind calms, I realize I’m not that old, relatively speaking. However, there are still many goals and life events I have yet to achieve.
Having a chronic condition like sickle cell disease means that the topic of death comes to mind more often than I’d like. Each crisis or complication makes me question how close I am to my saga ending. When I flash forward in time, for a fleeting moment, I think about how it will happen. Will I grow old and pass away peacefully, or will sickle cell cause a different ending?
I never spend too long theorizing about the end of my saga because nobody knows when it will happen. Instead, I try to focus on reality and remembering to live, regardless of my circumstances. However, embracing reality sometimes comes with cruel twists. I’m often reminded that being a sickle cell patient means fighting for survival.
I was recently reminded of this truth while reading a news article about sickle cell patient Chaz Carl Powell, who sadly lost his life due to complications of the disease. According to The Mirror, citing Powell’s mother, Powell was scheduled to fly back home to the U.K. from Jamaica, but the airline rejected his passport, causing him to miss his routine lifesaving blood transfusion. The airline said his passport was too badly damaged to be accepted, the newspaper reported. Powell died a few days later apparently from organ failure.
The news rocked me to my core, as I empathized with Powell and his family. I tried to put myself in his situation, and imagined the pain, sadness, and desire not to suffer he must have felt.
When I realized that Powell was denied access to the saving grace that would have been a blood transfusion, my empathy and sadness turned to anger and frustration. His fateful ending highlights the years of neglect and marginalization that sickle cell patients have faced. Unfortunately, this was not the first time people wouldn’t listen to a sickle cell patient, and sadly, it won’t be the last.
This is a damning example of how policy can override a decision-maker’s humanity. As someone who likes to travel, I am aware of the many risks while flying. I imagine Powell was also knowledgeable and had taken multiple precautions to ensure he’d receive the care he needed, but it still wasn’t enough. His story is all too familiar, and I’m still asking the question, do we have to die for change?
This situation was another rude awakening to how much work still must be done to raise the profile of this life-threatening condition. With all the time left in my saga, I hope to see real change in outcomes for those of us with sickle cell. During my birthday month, I won’t question when my saga will end, but rather ask what else we can do to ensure our voices are heard.
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.