Welcome to ‘Shaniqua’s Sickle Chronicles,’ My Story of Sickle Cell Disease
If someone asked you to tell your life story, what would you say?
We all have a story. Some might begin by describing their life from the point of meeting their partner, or from high school, or perhaps following the birth of their child. We remember and retell our stories based on our life’s highlights, similar to how sporting events are reported in the news.
I bet you’ve never sat down and thought about the highlights of your life. What would be the key stories, experiences, and characteristics someone would have to know to write your biography in its simplest form? We all are multifaceted individuals; our lives are made up of a variety of experiences, and we harbor many different character traits.
During the mundane moments, our lives often feel one-dimensional, but the truth is we are anything but that. However, even the most boring or seemingly inexperienced person is made up of myriad traits and experiences. This means that the most boring or inexperienced person is pretty interesting when you think about it.
I am aware that one thread is woven through every layer of fabric that is my life. This aspect of me was present from the beginning of my life and is evident in all other aspects, too. It will remain this way until my dying day.
I have a condition called sickle cell disease. This is a blood disorder in which my red blood cells are banana-shaped. The funny shape means that my blood cells have difficulty navigating my blood vessels and carrying sufficient oxygen throughout my body. Sickle cell causes a load of other issues, most of which we will delve into over the course of our journey together.
When you look at me, it’s easy to assume I’m able-bodied and well. I do not fit the stereotypical look of an “ill person,” unless you’re extremely vigilant and notice my discolored eyes. But for the most part, you’d never know I’m sick. This, I think, causes those around me to compartmentalize me into “sick Mary” and “well Mary” based on my good and bad days.
As I previously noted, it’s rare for one aspect of our lives to be present in all other aspects. I guess it makes sense that people categorize me the way they do in their heads. But it’s incorrect to do so.
I have sickle cell, and it affects everything. It’s not simply a blood disorder. It has a significant impact on everything. As if the physical pain it causes weren’t enough, it also affects my mobility, my energy, and even my mental health. It can really be a heavy burden to carry around all the time.
But I’m learning that because sickle cell is the single thread woven into each patch of my life, it is also prevalent in my character. I think I have some good character traits that I’ve cultivated because of my life experience as a sick person. These include kindness and empathy, and being fun-loving. They are the things that make me, me!
Generally speaking, people tend to feel sorry for me because I’m ill, and though parts of me can understand it, I wish that wasn’t their response. Sickle cell, to some degree, has helped mold me into the person that I am. I am the person that I am because I have this disease.
Sometimes we endure the most difficult circumstances because we are being molded into becoming better, more resilient, more understanding, and more caring people. It may be difficult while we go through it, but the end result once we have made it through is always for our betterment.
I’m Mary Shaniqua, a 30-year-old sickle cell patient. This is who I am. Welcome to my world.