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Choosing to Live My Best Life: Living the Adult Life with Sickle Cell

Updated: Jul 19, 2018



“Limits, like fear, is often an illusion.” —Michael Jordan

Living with Sickle Cell Disease often comes with many challenges. And with these challenges comes living in constant fear and worry. However, as we all know, that is no way to live a full and prosperous life. This year, I made the conscious decision to release my inhibitions so that I can live my best life.


The Trip

In March, I had the amazing opportunity to visit Los Angeles during spring break with some friends that I met in my Master’s program at Wake Forest. Although I was a tad apprehensive to go on my first vacation without my family, I was super excited for the new experience. However, a few weeks before our fabulous LA trip, *boom!* I a had sickle cell crisis.

To add insult to injury, what usually lasts for about a week lasted for two, and even included an inopportune visit to the emergency room. Not to mention the additional week it took to fully recover.


While this was not the first crisis I experienced away from my parents, I was extremely uneasy about how my trip would affect my health (and visa versa). I even considered changing my flight to go home to Alabama instead of Los Angeles. I know right—not the best trade off. However, it was easier for me—as it is for many Sicklers—to retreat to the safety of home rather than to pursue the regularly scheduled programming of life.


No one eloquently discusses the trauma and recovery that comes with and after a sickle cell crisis. The energy expended from a crisis is not something to take lightly nor is it something that is easy to get over.

PAUSE. Now, for those who don’t know, a Sickle Cell crisis includes—but is definitely not limited to—the following: constant, excruciating and crippling pain; exhaustion due to lack of oxygen circulating; and taking twice as long to do everyday activities, including walking from point A to B. Whether or not I should go to LA was a fight or flight moment for me. Delimiting my sickle cell disease, one thing you all should know about me is that I operate best in comfort zones, and Sickle Cell Disease has made that comfort zone as strict and compact as possible—without my permission, of course. Those limitations include: No extreme temperatures, no rigorous activities, and no high altitudes (that definitely put a damper on my LA hike to the Hollywood sign...don’t worry, my friends were really great and accommodated me—I went to the Griffith Observatory instead. Just as amazing!)


Reflection

Now, at face value, it may seem that the trip was just a moment of fun and relaxation during a period of time called “Spring Break” (and it was), but it was also something more. This trip to Los Angeles served as a moment of rejection and rediscovery. I took it upon myself to look my limitations in the face, along with fear, and boldly reject it. Not only did I do that, but I finally rediscovered and embraced my independence, as I learned to trust my ability to take care of myself. As an adult Sickler, it is important for us, as a community, to become aware of our independence, as well as, the tools in which we possess in order to make that independence a reality. The trip was the start of that journey and I am better for it. Not to mention, I ended up having an amazing time with my friends in LA for the first time—an opportunity I would have missed had I denied myself the chance to prove that I could take care of myself.



Lessons Learned

#1 Find community in peers and friends. It is vital that Sicklers—young and, definitely older—find people who will look after you, as well as, challenge you to look after yourself. My tribe of sister-friends within my graduate program graciously allied around me to not only ensure that I was feeling well, but also ensure that I was being proactive in maintaining a healthy lifestyle.


#2 Bet on yourself and your body more. I am definitely embracing this lesson, as a 23-year-old woman, who is learning how to trust the threshold of her own body, as it pertains to the challenges of such a debilitating disease. Educating yourself on sickle cell disease and how it affects your body is vital to understanding and debunking any limited views on your health.


#3 Overestimate your power. It is important for Sicklers like us to never lose sight of the strength we possess—even in our weakest moments. As physically, mentally, emotionally, and spiritually draining as this disease can be, I know that each of us have a distinctive strength that qualifies us as warriors.


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