I was diagnosed with sickle cell disease at three months old in Haiti. The diagnosis from the doctor was followed by more tragic news; my parents were told that I was not going to live past five months. From that point on, my parents searched high and low for medication and knowledge about this unfamiliar disease. They spent an abundant amount of money in Cuba looking for any medicine that was available. They spent countless hours trying folk medicine while I was still in pain.
Fast forward to the fifth month, the uncertainty of how my condition would play out had them crying, anxious, and frightened that their first-born child would no longer be with them. Everything that they had tried had failed miserably. As the last resort, they took me to ER at Hospital Saint Francois Sales in Port-au-Prince, Haiti, where I was admitted; they administered oxygen, IV fluids, and multiple medications. All of this was unfamiliar and frightening for my young parents. My parents dropped to their knees and started praying, and by the grace of God, I did pull through. A couple of days later, my crisis had subsided, and I was released from the hospital. That month was rough for us all but thank God I managed to survive all the suffering up until that point in my young life. My parents spent my whole first year with fear in their hearts knowing that on any day I could potentially take my last breath.
Growing up with sickle cell disease is difficult and hard. It makes living everyday life very challenging, inconvenient and exhausting. My parents treated me like I was so fragile I may as well have lived in a bubble. Once when I was nine years old, my parents took me out for pizza and ice cream followed by a stroll in the park. That night I came home and went into a sickle cell crisis. I was not allowed to eat pizza or ice cream for months to come. For my seventh birthday, my parents threw a pool party to celebrate. I was only allowed to stay in the pool for fifteen minutes. After fifteen minutes were up, I was supposed to stay outside the pool and watch all my friends and family have fun and “if anyone dared get me wet, there would be consequences.” As you can tell, my childhood was not very exciting. I spent half of my life fearing the result of any action. Every time I would have a crisis I would blame it on an activity, time, weather, person, or food. As I got older, I even started blaming my homework for my sickle cell crisis. I would go months without being able attend school. At one point, I told myself this cannot be the life that I was supposed to have, if so, I would rather just let the pain take me away. I told my mom this, and I saw the tears form in her eyes as she tried to find words of hope to tell me.
My family and I came to America in 2000. I was nine years old, and we were hopeful for a new beginning. This marked the turning point of my knowledge of sickle cell. With their compassion, knowledge, and resources, the doctors changed my life in ways that I could not imagine. They gave me insight into what I was dealing with as a child and painted a picture of what life could be like moving forward. They have shown me how to live a healthier life, and what was most important to me: How to be a normal adult. I applied and was accepted into an RN bachelor’s degree program, a stressful four years during which I did not have any crises. In addition to the academia, I learned how to snowboard, started boxing and exercising more, and doing things I had only dreamed of. As my doctors taught me, it’s not about pushing your boundaries with sickle cell, but instead, it’s about making the best of it. This is why I say sickle cell is my neighbor. Some neighbors are fun, helpful, and some are just unpleasant. You have to learn how to live with them, how to take their energy and turn it into a positive factor. Most importantly never stop trying to be a productive member in the community.
Benjedick Joseph is a nurse. Amy Sobota is a pediatric hematologist-oncologist.
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