Role models. These are the people in our lives that we look up to. They often serve as examples of what we are trying to achieve. Growing up, I cannot recall having a role model that looked like me, had a similar medical condition, circumstances, or something for me to strive towards. There weren’t dolls to be bought in the store. Adaptive equipment weren’t tools to aid my success, rather, serve to make me stand out more than I already did; versus standing taller. This reality changed for me when I stumbled upon Claire Wineland’s Youtube channel. If Claire Wineland’s story isn’t one that you’re familiar with, here is a brief overview. (I will also embed links to her foundation’s page and Youtube at the end of the post). Claire was born with Cystic Fibrosis. Cystic Fibrosis is characterized as ” a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky.” (Cystic Fibrosis Foundation) https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
Claire’s mission was to encourage others to find their life’s purpose, to live a deeply meaningful life, and to change the way society talks about and views those with illnesses. On the one year anniversary of her passing, I’m celebrating her mission by reflecting on the three powerful lessons she taught me.
- Living a life of purpose.
- Power in illness.
- The freedom in acceptance.
Claire was quoted saying “death is inevitable, living a life you are proud of is something you can control.”
Society’s current dialogue around illness and mortality is less than positive. It leads one to believe that an individual cannot live a deeply meaningful, beautiful life because they are less than well. Claire made me believe that society couldn’t be more wrong. My life didn’t lack purpose because I was sick. My life wasn’t less valuable because there was a possibility that I could die as a result of my condition. I learned my purpose and mission in life because of my illness(es). In that way, these conditions were not my enemy, but my partner. They were an ever-present reminder to live my life so completely and fully. There is incredible power in that revelation.
Acceptance. Freedom. These were the keys unlocking the chains of fear. I remember being very young when my family explained to me (with age-appropriate dialogue) the reality of my conditions. I had grown up with such knowledge and intimacy with the reality of my circumstances, and what that meant to my quality of life. In my twenty-seven years I can only readily think of three times in which I was sick enough that I feared the pain, and what I knew could be the reality of my death. I had a fairly difficult conversation with my medical team this past December. Truthfully, I’ve not yet completely processed it. However, those three memories, they made me understand that the talks I had with my family growing up were necessary because death could be a possibility. What was more, when I stopped fearing the “what ifs” and the “could” I was freed.
In honor of Claire, I am refocusing on my personal call to action. I am putting an end to the fear that could have crippled me. I will no longer fear the possibility. I will no longer use my conditions, or my mortality, as an excuse or a crutch to not do what scares me more than my mortality: to love and be loved. To try everything that scares me because I don’t know how others will respond. To walk into a room unafraid, because I know that I am no less beautiful or important than my peers. Claire’s mission was a gift. I intend to honor her by remembering these lessons and being better because of them.
If you’d like more information on Claire or her foundation, Claire’s Place, see the links below.