How Sickle Cell Shifted Me
Note of Clarification: I am mother to a sickle cell warrior. This blog is about my experience as his mom and caregiver. My goal is to spread awareness of sickle cell disease and its impact while reserving his own personal experience for when/if he is ready to share on a public platform. He has been doing well, and for that I am deeply grateful.
In the Spring, I was telling someone about my decision to leave my job the previous summer, how I’d been spending time resetting my priorities and gaining a clearer sense of purpose. She smiled and warmly replied, “Oh, you’re on a healing journey?” Her response caught me by surprise because 1) I had never called it that, and 2) I wasn’t sure if she was asking me or telling me.
Was there something about me that was saying more than I actually wanted to say? Did I appear in need of healing? Was she judging me or reading me? In an effort to move past the awkward moment of silence, I politely smiled and nodded, and we moved on to another topic.
Looking back, I will never know why this sweet woman chose to rename my “lady of leisure” season and turn it into a time for repair, but her foresight was wisdom. The truth is that this time away from traditional work has certainly been a healing journey that has felt equally courageous and destabilizing.
An Unexpected Shift
Coincidentally, right around the time I was transitioning from my full-time role, my oldest son began to experience severe symptoms related to sickle cell disease. Sickle cell disease is a genetic blood condition that causes red (oxygen-carrying) blood cells to sickle, stiffen, and reduce blood flow throughout the body. This can lead to various symptoms including excruciating pain throughout the body, extreme fatigue, and potential organ damage over time.
Art by Rizzy Akanji - https://akanji.studio/
Although my son was diagnosed at birth through newborn screening, his most severe symptoms did not appear until shortly before his 5th birthday (and right around the time I was beginning my career pause). We’d been living our lives as a mostly carefree family with minimal concern about medical challenges.
For greater context, sickle cell is a spectrum that presents differently in many individuals. There are some warriors, though relatively few, who experience little to no symptoms. My son has a form of sickle cell that is typically labeled as “less severe”, but that is not always the case. For us, his early years were mostly a smooth ride until it became rocky.
Rather quickly, much of the “free” time I’d previously planned to use for lunch dates, novel reading, and daytime yoga was consumed by doctors’ appointments, sickle cell conferences, and extensive research on how to help prevent the next pain crisis. I do not have sickle cell, so I can’t describe the pain, but my son’s persistent cries when in crisis tell me more than enough.
Here is how sickle cell has impacted me:
Sickle cell has made me feel angry. It has made me feel confused.
Sickle cell has made me feel sad. It has made me feel frustrated.
Sickle cell has made me feel powerless. It has made me feel stuck.
Sickle cell has made me feel afraid.
And in many ways, sickle cell has made my life richer:
Sickle cell has given me new perspective. I’ve always had a family–first mentality, but sickle cell sharpened my focus. My boundaries are clearer and firmer. I also consider myself a high-achiever. I thrive on problem solving, strategy building, and quickly “fixing” what’s not working. I am eager to do that for my son’s diagnosis, but I’m also learning that sometimes the best thing I can offer him in the moment is my presence, consistent care, and advocacy.
Sickle cell has given me the gift of silence. You can’t heal if you can’t hear. I’ve learned how to cut the noise to truly embrace quiet and stillness, and to sit with my thoughts and unpleasant feelings. I’m also constantly encouraging my son to listen to his body to better learn what factors may trigger pain.
Sickle cell has given me greater community. I’ve connected with warrior moms whom I met online, through mutual friends, in clinic waiting rooms, and I even recently met a warrior mom in IKEA. She was wearing a Cure Sickle Cell Now t-shirt. It brought the brightest smile to my face. I said hello, we shared our stories and exchanged contact information, promising to keep in touch.
Sickle cell has given me hope and greater purpose. Reading stories by other individuals fiercely navigating life with sickle cell has felt enriching. Witnessing their strength inspires me to be a better advocate.
Ultimately, I am becoming a more rooted leader because of the experiences I’ve had while caring for my son with sickle cell.
It shook me. It shifted me. And it grounded me in a way that I needed.
As I continue to journey through life and leadership, I am doing so with greater clarity, authenticity, resilience, and strength. Some might call that a healing journey and others might simply call it growth. In retrospect, it has been just what I never knew I needed.
From Pain to Purpose
What does this have to do with philanthropy, you might ask? Well, my belief is that philanthropy (and leadership) are always personal. When we are clear on what we care about and the issues that are critically important to us, we live, lead, and give with greater intentionality.
I encourage you to take a little time to reflect on what life-shifting events you’ve experienced or witnessed. Reflect on what may have been lost, what was gained in that moment or later, and then ask yourself if there is anything meaningful you can give–time, talent, or treasure–to honor it. This is philanthropy in its purest form.
If you are interested in learning more about sickle cell, consider exploring and supporting a few of my favorite nonprofit organizations that are founded and led by sickle cell warriors and their families. Sickle Cell 101, Sick Cells, Ruby Ball Foundation, Maryland Sickle Cell Disease Association, Sickled Cycle, and HemoG.L.O.W.bin.
There are more than 100,000 people in the U.S. living with sickle cell disease. 90% of patients are of African or African-American descent, primarily impacting Black people. Sickle cell disease has traditionally been underfunded and under-researched. The current administration recently cut significant funding for sickle cell research, hindering medical advancements that could help enhance the lives of individuals with sickle cell. For advocacy resources and updates, please visit Dr. Charity Oyediji on Instagram or the Sickle Cell Disease Association of America.
If this post resonated with you, send me a note at empactfully[at]gmail. I would love to hear from you.
Happy Sickle Cell Awareness Month! - yes, happy + sickle cell can co-exist. :)
Emerald