To Live Beyond Sickle Cell: Freedom, Proximity and the Love of a Family
By Sam Lewis
In memory of our daughter O’Shanta
It’s Christmas Morning 2017. I’m cooking breakfast for the family — eggs, grits, bacon, biscuits, and sliced fruit. I can hear everyone upstairs beginning to stir.
The youngest in the house is DD. She’s 17 but tomorrow is her birthday, so this Christmas in my home everyone is an adult. The excitement and anticipation of opening presents still exists as if there are children in our home. I hear my wife Rosalind and our three daughters coming down the stairs. The Christmas tree is in the family room right next to the kitchen.
Everyone is sitting down and passing around gifts. O’Shanta, the oldest, says to me, “Come on Papa Bear, open your gifts.” I turn off the burner on the stove and move toward the family room. I sit next to my wife and hand her a gift, a set of earrings. As my wife is opening her gift, O’Shanta yells “EEEEEEEE, YEEEESSSSSS!!” as she sees her Coach bag.
In this moment, my heart is filled with love and a contentment that’s hard to describe. As I relive this beautiful moment in time, my eyes fill with tears.
After 24 years of incarceration, I felt prepared for the transition to freedom. I’d readied myself mentally, physically, and emotionally, or so I thought. What I was not prepared for was watching someone I loved, my daughter O’Shanta — Shanta, as we call her — battle the severest form of Sickle Cell Disease (SCD), type SS. I was not prepared to watch the pain that this horrible disease causes and the struggles Shanta endured in order to live as close to a normal life as she could.
It was shortly after my release from prison that I met my wife Rosalind, Shanta’s mother. A few months later, I met Shanta. She was 23 years old at the time. The moment I met Shanta I felt her positive spirit. She gave me a hug and said her mom had told her all about me.
As the years of my freedom rolled by and I came to know Shanta more, I learned that she had a wonderful sense of humor. She would perform hilarious imitations of people, including me. Her rendition of WC’s Crip Walk was a combination of Norman from Saturday Night Live and The Walking Dead. She loved her sisters and, as the oldest, she’d buy them whatever she could. She loved shoes (especially Jordans), the beach, movies, gangsta rap, reality TV, Marie Callender’s pies, fresh pineapple, shopping, and living life. After my release from prison, we would watch football, and she would laugh when I was upset about my beloved Dallas Cowboys losing though she’d be right there watching with me with her Jason Witten jersey on.
Shanta started calling me Papa Bear after about a year, and I called her Shanta Bear. I loved her as my own. She loved the work I did, and always asked about the youth I mentored, and the men we were helping inside the prison system. She taught me how to use a smart TV, what Netflix was about, and how to record the shows I wanted to watch if they came on too late. As simple as these things may seem to most, they were important to me for many reasons. The patience and humor that Shanta shared in these moments made my frustrations dissolve and filled my heart with appreciation for my daughter, who exhibited such fearlessness as she battled her chronic disease as a sickle cell survivor. She knew about my past, and how long I was in prison. She never judged me and would show true understanding when I would struggle with my transition from incarceration to freedom with simple tasks like programming a smart TV.
After being incarcerated for over two decades, the seven years and eight months I’ve been home have been filled with the joy of experiencing many firsts. My first Starbucks, first time riding a Harley-Davidson, first time buying a house. These beautiful years of freedom have also been intertwined with extremely difficult moments and feelings of helplessness and heartbreak. There would be times in the middle of the night when Shanta would be in so much pain that we’d call 911 for emergency services, which would result in hospitalization for a pain crisis. These years featured numerous trips in and out of the hospital watching and praying as Shanta’s health slowly deteriorated.
With freedom comes deeper depths of love, the result of being proximate to those you love and care for.
During the many times Rosalind and I sat in those hospital rooms, as Shanta battled another Sickle Cell Pain Crisis, I never felt more helpless in my life. In prison, you always kept an emotional distance from others, even those who are family, or those you considered friends. It made it easier to let them go when their twilight approached. With freedom comes deeper depths of love, the result of being proximate to those you love and care for. It’s different being free and facing the mortality of those you love the most. As I’d sit in the hospital room, I would watch as Shanta would force a smile and say she would be OK. Every time, it would break my heart. I survived gangs in Los Angeles, being shot twice, and 24 years in prison yet I was not prepared for this: to genuinely love and care for someone, to watch that person suffer, and to be unable to do anything about it.
On July 6, 2018, at 7:55 PM, Rosalind and I stood by Shanta’s bed side as she passed away from complications caused by SCD. Teams of doctors did everything possible to save Shanta. In the end, the damage that SCD did to her organs was too much.
Standing there in that moment I realized I would never be able to cook Sunday morning breakfast with Shanta and Roz.
For those Sunday morning breakfasts I would usually be up early. I imagine it now: the aroma of maple bacon wakes the house. Shanta is the first to come in the kitchen and asks if I’m ready for her to start the waffles. She chatters on about the latest reality gossip, or what she has planned for the day. Roz makes her way down to the kitchen and begins to prepare the grits. The feeling of being together in our home is one of love, warmth, and comfort.
With deep sadness I’ve thought about O’Shanta not being around. On the early weekend mornings as I open the plantation shutters in the family room, I will no longer hear Shanta opening them in the living room. We will no longer share our Sunday morning family breakfasts, football season, and the Marie Callender’s pies.
Shanta lived life fearlessly, with a beautiful smile and a giving heart. Her smile would light up a room. And if you were in that room, you would feel the energy and love she had in her heart. Shanta was the most positive and caring person I have ever known. She always thought of others and how she could help if someone was in need. I remember one summer day when the temperature was well above 100 degrees, Shanta saw a man going through trash containers at the gas station. She stepped out of the car and offered him a cold bottle of water.
Shanta and these experiences remind me to live life with love, understanding, compassion, and patience. Enjoy the beautiful moments. Give from the heart, and smile no matter what — that is my Shanta Bear.
Sam Lewis is the Director of Inside Programs at the Anti-Recidivism Coalition (ARC).
