Embracing Life and Legacy: Lessons Learned from a Sickle Cell Warrior’s Journey
At 38, my life has definitely been a mosaic of challenges and triumphs, each piece colored by my journey with sickle cell disease and the bonds I share with family and friends. This journey, though shared in diagnosis with my sister Raven, has been uniquely mine. Every warrior's path through this condition is different, shaped by individual battles, victories, and heartaches.
Raven & I at an early age
I believe I was no more than 2 years old in this picture. My sister suffered from complications more other than I did. But her smile was always bright.
Raven and I grew up side by side, both carrying the heavy burden of sickle cell. Despite our shared condition, our experiences diverged, each of us navigating our own set of obstacles. Raven's journey ended tragically at the age of 24, when a leg ulcer developed into a fatal viral infection. The memory of dropping her off at the hospital, unaware that it would be the last time I would see her alive, still haunts me. I visited her once, three days before her passing, right when they were about to discharge her, a brief and heart-wrenching moment that forever changed my perspective on life and death.
Losing my sister was like losing a part of myself. Raven wasn't just my sister; she was my best friend, my confidante, my fellow warrior. Her strength and resilience in the face of adversity were remarkable, and I often find myself drawing on her memory for strength. Her smile, a beacon of hope and courage, is etched in my heart, a reminder of the bond we shared and the battles we fought together.
My Sisters and I.
This was taken a year before she passed away. My youngest sister Kalia, me, and Raven, she was the oldest of us 3.
After Raven's passing, I grappled with an overwhelming fear of death and uncertainty about my own fate. Living with sickle cell means constantly balancing on a tightrope, with the threat of crises and complications always looming. The loss of my sister intensified these fears, making every day a struggle to find peace and purpose. Yet, through this struggle, I have come to realize that life, despite its inevitable end, is a precious gift.
I strive to honor Raven's memory by living my life with the same strength and resilience she displayed. Her journey, though cut short, taught me invaluable lessons about courage, perseverance, and the importance of cherishing every moment. I miss her deeply, the void left by her absence a constant ache, but I find solace in the connections I've made with other warriors. These friendships, born from shared struggles and mutual understanding, have been a source of comfort and support.
2020 E.S.C.A.P.E Retreat
This is where I met other Sickle Cell Warriors and developed lasting friendships.
While no connection will ever replace the one I had with Raven, the community of sickle cell warriors provides a unique and powerful bond. Together, we navigate the challenges of our condition, supporting each other through crises and celebrating our victories, big and small. These relationships are a testament to the resilience of the human spirit and the power of solidarity in the face of adversity.
Living with sickle cell is a journey marked by pain, uncertainty, and loss, but it is also a journey of strength, hope, and connection. Through it all, I carry Raven's memory with me, a guiding light that reminds me to live fully and fiercely. Her legacy lives on in my determination to face each day with courage and to find joy in the moments of respite. Raven's spirit is a part of me, and through her, I have learned that while life is fragile, it is also profoundly beautiful.