To Sickle Cell, With Love

It’s nearing the end of September, Sickle Cell Awareness Month.

Although the month has passed quickly, it feels like Sickle Cell Awareness Month was longer this year. On June 20th we lost Prodigy, rapper, actor, and author who battled sickle cell anemia for his entire 42 years. In the weeks following Prodigy’s death, sickle cell anemia trended in the media and on social networks. In response, another music icon, Tionne T-Boz Watkins, vented frustration in addition to grieving, tweeting, “I HATE it takes the death of a celebrity to bring even more notice to something I talk about almost in every interview for 25years [sic].”

Let me back up for a moment. I grew up with Prodigy and T-Boz. It was a one-sided relationship, but me and their cassette tapes hung out together every day after school. I fell in love with TLC first. Ain’t Too Proud To Beg was one of those cherished cassette tapes that came with full lyrics. Bless their hearts, I studied every word. There was no having to rewind it again and again until I had written out all of the lyrics as I heard them. I can still rock that album at karaoke. I had to settle for Mobb Deep’s Survival of the Fittest recorded off the radio. To this day, when I hear them, I expect to hear Funkmaster Flex’s voice talking over the beginning.

Despite both of these iconic artists making an indelible impression on my childhood, the fact that they both battled sickle cell anemia seemed no more than a rumor. There was no Internet, no social media or really even email. And certainly, news of their sickle cell wasn’t newspaper worthy. In fact, my first memory of hearing about sickle cell was through Tupac’s infamous diss track, Hit ’Em Up. He used sickle cell as slander to minimize Prodigy, to call him weak and inferior. That was in 1996. I was 15.

The song took on new meaning for me the following year when I found out I carried the sickle cell gene. We studied it in 11th grade biology and when I mentioned it to my mom she told me I was a carrier. Sure enough, she dug out my 16-year-old newborn screening test results. I paid closer attention in class and did some additional research. I thought this knowledge would remain an interesting background piece of my identity. I didn’t think it would change my life.

It is estimated that upwards of 2 million Americans carry the sickle cell trait — meaning they inherited a sickle cell gene from one of their parents. I am one of them and so is my husband. Approximately 100,000 Americans have sickle cell anemia — also called sickle cell disease. Our daughter, Aliyah, is one of them. She inherited a sickle cell gene from both of us, which caused nearly all of her red blood cells to become misshapen and function abnormally.

Probably, like most health challenges, you really don’t appreciate what it means to live with it until you have lived with it. In the first seven years of Aliyah’s life, she spent a combined nearly six months hospitalized, surgery to remove her spleen, and had over 40 blood transfusions, enduring needles and testing every few weeks.

Throughout all of this, I have thought of Prodigy and T-Boz often, my childhood musical love-affairs. I thought of the tireless work it takes to put out album after album, the concerts, tours, and traveling. We could barely take one vacation without ending up in the hospital. We had to be conscious of hot and cold weather, cold water, people with colds and flus, high-altitudes, food-borne illnesses, physical exertion, etc. I developed a whole new level of respect and awe for T-Boz, Prodigy and the rest of my sickle cell community, who refused to say no to the life they wanted and just kept pushing forward, through the pain, and setbacks, and hospitalizations. Through the reality that even though your body has never gotten enough oxygen to breathe and nourish and grow, you still march on as though it has. Through the reality that even while planning your life, you need to always know where the nearest hospital is. You need to always have a way to refrigerate your medication. You need to always have a refill of Oxycodone on hand. You need to have memorized your long medical history and you need to write it hundreds of times for medical staff who know nothing about sickle cell, yet repeatedly ignore your instructions about what you need. You need to witness far rarer illnesses receive more attention, support, and resources, while you fight with disbelieving people about how much pain you are in.

My family lived this. Fortunately, thanks to her little brother donating bone marrow for two transplants, Aliyah’s body no longer produces sickle cells. Her cells are healthy and, at 8 years old, she is starting to experience life free from sickle cell. It’s still in her DNA. She can still pass the gene to her children, as we did and as her older sister can. It’s still part of her, as it’s part of us, but it no longer holds her back from the life she wants.

As this month ends, I’m holding love and light for T-Boz and the rest of the sickle cell community to carry into October and beyond. I’m holding space to honor Prodigy. I’m hoping you can do the same. Make sickle cell trend. Make people dump ice over their heads to raise money. Buy T-Boz’s new memoir, A Sick Life. I guarantee it’ll change how you stand for folks with sickle cell. It’ll increase validation when someone with sickle cell says they’re in pain. It’ll build patience when a child with sickle cell needs more time to answer a question in class. It’ll prompt more willingness for swimming pools to increase the temperature of the water so that people with sickle cell can swim, too. It’ll mandate that medical professionals learn about sickle cell and not guess their way through our treatment.

And it will build a little more inclusion and equity. In a time where we, as a society, are examining whose stories have been told and whose have been omitted, whose experiences have been uplifted and whose have been negated, the stories of sickle cell scream for their moment. Now is a good moment to start.

Ways to support the sickle cell community:

Donate blood / Join the bone marrow registry

Everyone who can, should donate blood and join the registry. This is particularly important for people of color, since we are underrepresented in blood and marrow banks. This can be life-threatening for people of color who need blood transfusions and bone marrow transplants and can’t find a match.

Give money

I volunteer with the Sickle Transplant Alliance for Research (STAR), a non-profit organization that seeks to enhance the lives of children suffering from sickle cell disease through blood and marrow transplantation. You can also donate to your local sickle cell foundation, community organization or hospital.

Share this story and others