Health

‘I Didn’t Ask for Sickle Cell — It Chose Me’

My name is Benjamin Clark, I am 26 years old and I was born with sickle cell disease. I have endured 166 hospital admissions, 89 blood transfusions, and a major surgery.

SCD is a lifelong disease. People with SCD have irregularly shaped red blood cells, which cannot easily move through the small blood vessels and cause blockage, reducing blood flow and delivery of oxygen. Even though SCD is considered a red blood cell disease, it affects every type of blood cell in the body. SCD occurs in about 1 in 500 African-Americans and 1 in 36,000 Hispanic Americans.

Due to my illness, I never completed high school. I remember being admitted into the hospital what seemed like every two weeks. My mom would present documents to my school proving my hospital stays but, sadly, the school still failed me in all of my subjects. My mom did everything she could, even contacting an educational lawyer, who turned out to be hopeless. The school knew all about my illness, but they didn’t seem to care, which is not unusual for young sickle cell patients who often miss days from school due to the illness.

In the last meeting my mom and I had with the school administration, they informed me I had aged out. I was told I could no longer attend the school. I felt the principal and staff were rude, disrespectful and very unprofessional and disinterested.

One of my dreams is to attend a graduation ceremony and to receive my high school diploma. My mom taught me to never give up. The devil always wins if you don’t fight.

When my mom and I chose to become health advocates for SCD, she also began writing about my battle. Today, we have 16 publications out, all related to my illness. The Washington Informer has been following our story since 1997. Currently, she’s writing our book about my battle with SCD. She assures me that I am not in this alone.

Five years ago, I discovered I have a gift for making people laugh. My mom gave me a journal and I began writing about my life experiences. I was told perhaps I could be a great comedian in the making. My goal is to inspire, encourage and to bring forth healing, harmony and happiness to other sickle cell sufferers. Laughter oftentimes can be the best medicine. My favorite comedian is Tony Roberts, and I am honored to have him as my mentor. Also, I am the Prince of Rhyme … I’m always on time.

Too often in the medical community, sickle cell patients are perceived as drug addicts. Most of us are not. When I am in a sickle cell crisis, I hurt everywhere. But it is a painful suffering that is difficult for non-sickle cell patients to comprehend. All I can do is pray for the pain to go away, and endure because the treatment to stop it is restricted.

When I am hospitalized, which is where I always end up when a crisis occurs, I believe I have the right to the best treatment possible and I have also realized that bedside manners can have a positive effect during a hospital stay that can last up to 10 days. The three C’s — care, concern and compassion — along with respect, can go a long way with a sickle cell patient.

I didn’t ask for sickle cell — sickle cell chose me. To the sickle cell community: Our lives matter, too.

Back in February, my mom surprised me by adding my face to a poster along with President Barack Obama, Rosa Parks, Malcolm X and Dr. King. She did it in honor of Black History Month. Then in June, we were invited to the National Newspaper Publishers Association Convention at the National Harbor, where we had the honor of meeting, in person, Dr. Martin Luther King’s oldest son, Martin Luther King III. My mom and I presented him with a copy of our poster. Time stood still. This was a great experience for me. I will remember this moment forever.

I would like to thank God for seeing me through this, and for giving my mom and me a wonderful platform to be a voice for the sickle cell community. I truly believe what God brings you to … He will see you through. I would like to thank the following people for their unwavering support. They include: my awesome and adorable mom Deborah Clark; my Pastor Mary Saunders and the members of Solid Rock Holiness Church; my friends JaJa and Lewis; my grandma Pat and family; my aunts Vilmer, Sonia and Renee; our angel Yvonne; my godfather, Bishop Orlando Nesby; Dr. Benjamin F. Chavis Jr. and Denise Rolark Barnes. Last but not least, Tony Roberts, who helped me discover my gift.

I truly believe, “You don’t need nobody as long as you’ve got King Jesus!”

Update: Soon after Benjamin submitted this story to The Informer in August, he was admitted into the hospital for the 167th time. According to his mother, he received another eight units of fresh blood while eight units of sickle blood was removed from his body. He has since been released and is looking forward to celebrating his 27th birthday this month.

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