Remembering Claire Wineland

Although many of us were never able to meet Claire Wineland in person as fellow CF patients, her legacy and approach to the disease continue to have a major impact on the CF community.

Sept. 13, 2018 | 5 min read
Katherine Russell-Sponaugle

The CF community has lost someone special.

Several years ago, I watched a powerful TED Talk that Claire Wineland gave at the age of 14, in which she said, “People tend to get discouraged when they have problems or a thing to overcome, when really that's the part to cherish life the most, you know? That's when you get to get the most out of every second of your life.”

She then let out a rattling cough and joked, “Whoops, hairball.” At that moment, I smiled and thought, “Who is this awesome person?” I researched her incredible foundation and more about her life. And suddenly, I was drawn into a different worldview -- a new way of understanding my illness, my sense of confidence, and my life expectancy.

Photo by Larissa Perroux.

Since my lung transplant in 2012, I have experienced many joys and exciting changes in my life, from marriage, to fostering, to graduating with my master's degree and pursuing a career. I have also had a permanent tracheotomy placement since the surgery and lived with frequent panic attacks.

Aside from the help professionals can provide, I found that my anxiety -- mostly about the inevitability and nearness of death -- was eased when I worked at maintaining a healthy philosophy about early mortality. In “My Last Days: Claire Wineland” and other videos where she has spoken on this topic, Claire relayed a philosophy that hit home for me.

“Death is inevitable, but living a life that we are proud of … that is something we can actually control,” she states in the documentary. In other self-recorded videos, she speaks at length on this in the same way I might run through my own thoughts. She didn't sugarcoat problems or put on a fake smile, but she knew how to mitigate her suffering and assign it meaning. Many would call that wisdom, but it is also a practicable skill; Claire modeled how to do that.

Although CF patients are unlucky in that we have to avoid personal contact with each other to prevent the spread of germs and infection, we are so lucky to be alive with today's technology, which allows us to say we "knew" Claire -- just in a different way. We followed her on Facebook or Instagram. We watched her YouTube videos. While this sounds so distant on paper, the community she created and the sentiment she shared with us were all very real. It is not strange to say you will miss her and that you feel deep sadness and loss.

We are not her family, close friends, former teachers, or doctors and nurses. We do not know the grief they are enduring. But, the fact that the majority of us never knew her in person does not diminish the impact she had on many of our lives. On social media and beyond, followers are sharing story after story of how Claire pulled them out of negative spaces and into new ways of understanding their disease.

Tears came on and off all weekend after I read she'd had a stroke. I prayed, and I hoped. I checked back for updates. I wanted to see her emerge stronger than ever. I was excited for how she would feel taking those new breaths. I was eager to observe all she would accomplish after her new lungs healed. I was rooting for the road ahead -- for the life that this brilliant, songful 21-year-old would continue to live.

She is not just an inspirational figure in cystic fibrosis. We have lost a sister. A kindred fighter. A voice that helped make sense of some big questions.

For that, it can be difficult to separate ourselves from her story. It is helpful to share our experiences with CF so that we don't feel alone, but our empathy can be overpowering. Our observations as CF patients, the progression of our disease, and our pain are at times so synonymous that we hear each other's stories with searing precision.

Claire fought hard and had also arrived at her own philosophy to accept what she couldn't change. She encouraged others simply to live in a way that makes them happy and fulfilled. To do so is not only doing justice to her message, but to your own worthwhile existence as well. In her own words, “You have to find what makes you feel really alive, and you gotta just go with it!”

Claire spoke to the grim realities and morbid fears we encounter with chronic illness. Her honesty resonated because she had a bold way of reframing it all. She didn't dwell on death, but fixated on what made her happy instead.

She reminded our world of the lighthearted whimsy life still holds, from her world traveling to her singing to decorating her hospital room with posters and strings of lights to make it feel like home. With Claire, it was as if being alive was just the difference between grabbing hold of a bouquet of brightly-colored balloons and letting them go, watching them dance off to heaven.

Rest peacefully, Claire. Your influence on this world ripples on.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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In Memoriam

Katherine was diagnosed with CF at 6 months old and received new lungs at age 22. She works in criminal justice reform and human rights advocacy and is also a published author. Originally from Buffalo, N.Y., she now happily lives with her wonderful husband and two pups near Washington, D.C., striving to be as cool as her two sisters, Erin and Rachael.

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