Dear Sickle Cell,

Our relationship started 30 years ago. I never thought I’d learn to like or love you, but here we are. You are the invisible disability that transcends race, age, sex, and creed without ever denying it. We met in the ’80s but were better acquainted in the ’90s. Like most kids, I had a long list of questions for my parents. ‘What is it?’ ‘How did this happen?’ and with a broken heart, ‘Why Me?!’ For many years, I refused to accept SCD as a part of my reality. After watching a classmate get bullied, belittled, and labeled ‘sickler,’ I turned my back, built emotional walls and refused to face the same humiliation. 

Sickle cell anaemia. Illustration showing red blood cells affected by sickle cell anaemia (crescent shaped). This is a disease in which the red blood cells contain an abnormal form of haemoglobin (blood’s oxygen-carrying pigment) that causes the blood cells to become sickle-shaped, rather than round. Sickle cells cannot move through small blood vessels as easily as normal cells and so can cause blockages. This prevents oxygen from reaching the tissues, causes severe pain and organ damage.

You see, SCD is the rock on which I’ve built my perfectly imperfect life. Looking back, I wish I knew my disability would be my teacher and the key to my own version of success. Until I held her, called her mine and owned this invisible disability, nothing made me feel whole. Call it ‘tough love’ but I just had to learn to love and understand her.

SCD is the backdrop of my life story and in one clean sweep, she fueled my favorite character traits including passion, resilience, kindness, and service to others. She knows me more than I know myself and if I try to remember those bittersweet memories, there is one common thread: SCD played a major role in all of my decision-making. 

She taught me how to work remotely because with frequent hospital admissions, a hospital bed doubles as a make-shift school, break room or corporate office. Nursing assistants were classmates or interns (depending on the day) and a blood transfusion was my cue to take a break. If you really think about it, healthy blood is my energy source. So I guess that kind of makes me ‘superhuman’ or a ‘vampire’?! Who knows, but I do love a cool title! 

SCD outlined my dietary restrictions because in my case, food sensitivity or poisoning wasn’t cured with Benadryl, Pepto-Bismol or Gatorade. It can lead to a severe pain crisis or snowball into an infection, so salads at least three times a week are a must-have. One of my all-time favorite teachable moments is the daily reminder to live like tomorrow is not promised because truth be told, nothing in life is set in stone. 

For most of my adult life, I lead with the phrase “sickle Cell is a disease; It is not a verdict of who I am”-  a bold disclaimer that I apply to friendships and relationships with depth. Emotional walls become counter-productive when you want to form lasting connections with people because let’s face it – SCD and I are a package deal. Every person living with an invisible disability knows that dating can be hard to navigate because sometimes, dependability outweighs good looks (especially when your disease has a mind of its own.)  

The ‘Born’ Identity

As a creative, SCD is my muse and she continues to push me to see beyond what’s possible. Before I turned 30, I hit rock bottom and wholeheartedly wanted to give up. The emotional toll of watching your health deteriorate over time requires strength and I just didn’t have it. My lifelong fight with SCD was exhausting. Like a virus, it seeped into all facets of my life and I completely lost a sense of self. 

They say desperate times call for desperate measures, so I started researching curative therapies for sickle cell disease. After years of lost hope and unanswered prayers, I got my miracle! My only sibling was a 94% match, making him the perfect donor. Just like that, I got into the stem cell clinical trial at the NIH’s National Heart, Lung and Blood Institute.

World Sickle Cell Day written on notebook with stethoscope, syringe, eyeglasses and pills on wooden desk. Medical concept words.

In honor of World Sickle Cell Day – a global initiative to raise awareness for SCD, I have shared excerpts from my transplant diary. 

4 Things I wish I knew before the transplant..

  • Fear is a part of the process – My #1 concern pre-transplant was dying before I got a chance to dream. Although I live each day like it’s my last, death wasn’t something I was prepared to confront. Music is my soul’s first love, so to overcome fear with sprinkles of anxiety, I made music/tv series/movie playlists (even down to streamlining various genres) –  Kanye West’s “Stronger” makes me feel powerful!
  • Categorize your friends and family –  We all know people that we can lean on. As you get older, everyone in your entourage plays a different role. One friend shows empathy, the other gives award-winning pep talks. One parent problem solves and the other can always make you laugh. Find your tribe so you don’t feel alone.
  • Hit Reset – The transplant process is tough on the mind, body and immune system. Just before my transplant, I adopted what I call a “hard reset.” Chemotherapy feels like being in a boxing ring with no protective gear. After my infusions, I’d cry (your emotions need an outlet), wipe away tears, look in the mirror and say, “it’s a bad day, not a bad life!” I used to sleep as a daily reset button. 
  • Create a checklist or vision board – On my flight to the NIH, located in Bethesda, MD, I wrote down five things I wanted to do, without SCD. That list is under my pillow and a daily reminder to trust God as I keep fighting.

If you got this far, my heart and immune system thanks you! I just checked off item #2 on my list – to inspire the world with my story.

I may be on the other side, but my identity will always be a #SickleCellProdigy – a hashtag I created after the passing of Prodigy – an American rapper, a Sickle Cell Warrior and one half of rap duo – Mobb Deep.

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