Adopting the Mindset of a Pioneer Helped Me Find Healing
Last updated: June 2022
As of today, there are more treatment options, curative therapies, clinical trials, and studies to go around. Luckily, I've witnessed what the past ten years alone have yielded. Humans have compiled more detailed data on sickle cell than ever before and I am ever so grateful to be living in the same exact time period. I don't know about you but that makes me quite hopeful.
As well, there are more and more group platforms and outlets being created every single day by warriors themselves, which makes me even more excited. We are more connected than ever and have the extreme luxury of being able to instantly send and receive communication. How lucky are we to be living not during a time when sickle cell was surely an early death sentence, but is now slowly but surely being diminished both in its numbers as well as its the overall weight of suffering us all?
A work in progress
For me, I believe it was a process of deciding to fully commit to fighting for my life. Things certainly became more real once I started to have bigger dreams for my future. I recall wondering who I would become and what it would all look and feel like. Before the days of social media I would lie awake on my sickbed daydreaming of all the things I wished I could do if not for sickle cell; If not for the pain and unpredictability of it all.
Once I began to think of myself not only as a chronic illness warrior but also as someone who may succumb to it, my mindset shifted. Now, I thought, I may not live to a ripe old age but I would certainly make the most out of the time I did have. The bigger picture was beginning to set in. I knew then that my life may not go in the direction of my personal dreams for myself, but I could have an even greater impact than I ever imagined if I forged my own path.
Making a change
I made a decision to begin participating in studies, trials, and surveys to aid in the advancement of knowledge on sickle cell disease. Doing this made me feel as though I were able to make an impact no matter how small for the greater good. I realized that there was more than one way to be effective, and I had found one that suited me just fine. I was happy to offer my experiences on the subject, to offer medical samples, to keep pain diaries, whatever it took.
Yes, there may be times when the responsibility includes a certain amount of physical discomfort or exertion and I use those moments to remind myself that I am a warrior who has endured more pain than most can imagine. This does the trick as I vividly remember the throes of my crises. I pride myself on my endurance because it is what carried me this far. Living with sickle cell means becoming stubbornly resilient like a flower pushing its way up through the concrete.
A new mindset
I began to think of myself as a pioneer, a trailblazer of sorts. Suddenly my perspective was changed from helplessness to hopefulness. Being one small part of a wide fabric of the community has made a huge impact on me personally. I am freer in my mind knowing that I am doing my part.
Each one of us has a voice that deserves to be heard and counted. My duty became clear to me. I would take up the cause to document as much on sickle cell from my perspective as possible. My mission now included a new level of participation and I was more than ready for the task!
Finding hope with sickle cell
In my personal life, thinking of myself as an important piece of the puzzle created more self-esteem and pride in my journey than ever. Gone were the days of despair. I am no longer hopeless because I am now part of the solution.
Now that I had pride in who I was as a contributor to my community, the way I held my head shifted to support the invisible crown atop my head. My posture grew increasingly upward and more open than ever before. And my true colors began to shine brightly through my beaming smile. I encourage every warrior - no, I dare every warrior out there to find the same freedom and self-worth, you'll thank yourself!
Are you interested in connecting with other sickle cell warriors?