There are different types of sickle cell disease. The varying nature of the illness means that what sickle cell disease is for one person, may be entirely different for another. Heck, the frequency and severity of pain crisis can change throughout the life of an individual patient, and the medical community has not figured out what prompts these changes, but they are well documented. A patient that stays healthy for a year could spend the next year in and out the hospital. Therefore, considering these factors, we should never pass judgment on the capabilities of any sickle cell survivor. It is impossible to know what their current circumstances are. Singer T-Boz of TLC was able to dance on stage performing 60 to 120 minutes shows routinely, for years on end; some sickle warriors could never exert ten minutes of physical activity without initiating a pain crisis. Despite your circumstances, whether spry or frail, I want to know are you living the life of a champion or a victim. Are you living your best sickle cell life?
The Brain Game
When you have a life-altering illness, it is easy to fall prey to the victim mentality. From the earliest stages of life, living with SCA has meant someone has always been there to take care of you. From parents and family to the doting nurses of the pediatric unit. Even as an adult, you are still “taken care of” when hospitalized. Extra pillow? No problem! Thirsty? Of course, I’ll get you something! Granted, you are suffering debilitating pain when this occurs, but it is really about the mentality that can grow from the weeds of dependence. Also, SSI, and to a lesser degree SSD, can increase an existing dependent mentality. There is something said for living off the fruit of your labor. It is not a knock on the disabled (myself) it is just a fact. It is like eating vegetables picked from your own garden; they taste better because you did all the work. Even though your disability prevented you from working, and what you are doing to live is fine and understandable, it is fair to ask, have the circumstances forced upon me prevented me from living the fullest life possible? Are you living that “champion lifestyle?” That phrase will mean different things for the diverse sickle community. Some may be able to start a home business, for others, the “champion lifestyle” means they start a photography hobby, or the homebound champ – an online sickle disease book club. Heck, you might write that book you have always wanted to pen or start that family you were nervous to have. The point is – only you know if you are honestly living the fullest life you can.
The Persistent Thief
Sickle cell disease is like a thief in the night. It takes, and it takes, and it takes. Sometimes quickly and violently, but most of the time it is taking steadily a little at a time. Sickle disease physically wears your body down and mentally erodes everything else. Corroding life dreams, sabotaging romantic relationships, curtailing career paths, the disease does all of those things to many people around the world, but the real question is what does a champion do in response. If you are unable to become the police officer or join the military, there is always another door to open.
Seek Your Own Path
Forbes article How to Live the Life You’ve Imagined by Dorie Clark makes a few suggestions on how to get on track. First, face down your internal obstacles, so whatever birdy is on your shoulder whispering doubt in your ear needs to kill that noise! Do not let your internal fears or the external doubt of others alter your goals. I always hear people say “I can not go back to school, I will be 40 by the time I finish,” but you can be 40 with a degree or 40 without a degree, what sounds better to you?
Second, find your purpose! We all have a purpose in life. What is yours? It is definitely more than waiting for the next sickle cell attack. What matters the most in your life? Figure that out and turn it into action, turn it into your purpose for being on this little planet. You will enjoy the hard work because you care about what you are doing more than anything else in life.
The sickle community has successfully worked in almost any career or profession you can imagine. Still, SCA is so diverse; one must measure their success on a sliding scale. So do not concern yourself with the lives of others, just ensure that you are living your life to its fullest potential. Knowing that you can look in the mirror and feel you are the best person you can be, despite your sickle cell disease is priceless freedom.
To follow the rest of the list in the How to Live the Life You’ve Imagined article go to the Forbes website.