It usually begins as a pain in my chest or lower back. Next, it travels to my joints, slowly creeping into my knees, legs or elbows. By then, I already know what is coming and there is nothing I can do to stop it. All that is left to do is get to the hospital as quickly as possible and hope it is not as bad as the last time.
Many people call it a crisis, but to me, it means one thing – excruciating pain; constant pain. The pain is unbearable. The medication does not help the pain; and even if it does, it doesn’t last long. You don’t sleep. It feels as if someone is continuously stabbing you with a knife. There’s no way to describe it. I wish I could. I wish.
I remember my mother telling me the story of how it all started, when I was about nine months old. The whole day, I wouldn’t stop crying and she thought it was strange coming from a baby who barely had issues, unlike her other children. I was born in a country that, at the time, did not have all the tools to diagnose or treat sickle cell patients. I wasn’t diagnosed until age 14 when I first moved to the United States.
To the little boys and girls with sickle cell, I hope this letter meets you in good health as we all hope for every morning. I am a medical student at the American University of the Caribbean School of Medicine and I must say the journey through medical school is amazing. Amidst the stress of school, I am thriving. That’s because I choose to surround myself with positive people – people who give me life. I choose to do it this way because just like you, I must minimize my stress level as much as possible. Living with sickle cell and attending medical school hasn’t been a walk in the park, but I am proof it can be done. Like me, you can do whatever you dream.
My story is probably very similar to yours and many others’ with sickle cell disease. It is hard to explain just how bad the pain is. I have had the feeling of “why me?” Still, it breaks my heart to see people with sickle cell living their life as if they don’t have a life. I want you all to know that life is what you make of it.
I was born and raised in West Africa. I moved to the United States with my family when I was 14 years old and it wasn’t until then that I was diagnosed with sickle cell. I honestly do not know how I made it 14 years never once being treated for sickle cell disease. For most of my childhood, I was in and out of the hospital. My crises would last anywhere from one to two weeks and then it would take me about a week or more to recuperate and regain strength at home.
When I was diagnosed, my family members, especially my parents, were determined to not let this sickness rule my life. If I needed to rest, I did, but I was not allowed to quit. Like me, you can’t quit. You have to keep pushing. I know the days are long and the pain is rough, but you will make it.
In spite of my amazing support system, I still have people who try to knock me down. Medical providers – doctors, nurses and staff – have not believed my pain. They felt that I was just a “junkie” of pain medicine. On the other hand, I have had medical people who understand. People who have gone above and beyond to see me as more than a “sickler”. Through these experiences, I choose to look at only the positive ones and I ask that you do the same. There is more to our lives than what people do to bring us down. They may never fully understand what we go through and they’ll never understand our pain, but we have to push through each day in spite of them and aspire for the best.
I did not make it to medical school all alone. I got here because I chose the positive encouragement. I chose support. I am immensely grateful to the unseen help throughout my life and to those who assure me that despite every aggravation, I shall live. I thrive because I choose to believe that I can become whoever I want to be despite my condition – and just like me, you can too.