The passionate outpouring following Claire Wineland’s devastating passing last week has exemplified the influence she had on her friends and family, the cystic fibrosis community, and the millions of strangers she inspired. She was incredibly loved and admired — that was so very apparent.
I’m sure you can agree once you have heard Claire speak. It was hard not to feel inspired by her. It was hard not to want to move mountains. Claire was animated and vibrant, incredibly sacrificial with her time and beautiful perspectives, and she unapologetically crafted her own construct of what it meant to be sick.
While thinking about the impact Claire had on our community and the larger chronic illness community, three points she shared continue to loop over and over again through my grieving mind. The following three arguments are the messages I wish we would never forget in the face of CF; we should honor them endlessly, in Claire’s memory.
Knowing your worth
A societal impression exists that sick people don’t have happy, fulfilling lives because they are sick. Claire seemed to hate this notion as much as I do — it’s incredibly mistaken and damaging. She continually spoke about how pitying sick people disempowers them. (Side note: Pity and empathy are not the same; empathy is an emancipating experience, and pity is a belittling experience.) She encouraged her listeners, especially those with illness, to discover the “something” they could contribute to our collective experience. “I hope you know people who suffer most in life actually have the most to give,” she said in a speech to shoe company Zappos.
Taking back the power
Claire argued that when we are joyful, grateful, or motivated because of CF, not despite it, we take back the power our selfish disease unendingly tries to consume. I’m not sure I have ever heard something so profound, so beautiful, and yet so very true. The power lives in each of us as the protagonist of our stories to craft our narrative of what it means to live with a progressive and consuming disease. We can sit back and allow CF to ruin us, or we can refuse its ability to dictate our reactions, perspectives, and trajectories to empowerment. As Claire so passionately advocated, we don’t have to settle with sadness, grief, and loss because we are sick. The power is within us to craft a life we are proud to love because of CF — we know the deepest of lows and the highest of highs.
Claire challenged us to live slowly by truly appreciating each moment as a significant experience. Bucket lists can be great motivators to accomplish what we want to achieve, but they also overemphasize checking off boxes as quickly as possible, instead of savoring each item. I love Claire’s philosophy on living slowly and using our limited amount of time here on earth to welcome the rich, meaningful moments and allowing those memories to make home within us. Claire didn’t think we should do particular things just to do them, but to do things because they are meaningful and significant in our story.
We will miss Claire, her light, her vulnerability, and her warm desire to connect people, their experiences, and their worth. Thank you, beautiful girl, for sharing your goodness with us.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.