I’m in mourning for a 21-year-old woman whom I’ve never met except through one Twitter exchange regarding our mutual need for a double lung transplant. Claire Wineland died August 28, one week after she received her new lungs, due to a massive stroke.
I’m unable to shake this cloud of sadness for a remarkable activist who was deeply involved in the cystic fibrosis community. Expected to die at 10 years of age, she defied all odds despite spending a quarter of her life in the hospital.
An incredibly vivacious, energetic woman, she was a well-known social media presence and inspirational speaker since her first TedX talk when she was 13. She also founded a nonprofit, Claire’s Place Foundation, to provide support for families impacted by CF.
Claire found her purpose as a result of learning to live with a life-threatening disease. Instead of lamenting the unfairness of it all and missing so much of what teens experience, she chose to live life to the fullest. Escaping her hospital room once, she took an Uber to meet a hero of hers, Bernie Sanders, at a political rally.
Claire’s humorous YouTube videos offer an intimate look at the ups and downs of disease and dying, including “How the Oxygen Tube Works,” “Perks of Going to the Hospital,” and “Dying 101: What It Feels Like to Die.” Claire has been my muse for four months. She reminds me to make the best of my life, even while living with an end-stage lung disease.
Claire, like myself, loved to talk. We both want to share our personal experiences with our dysfunctional pipes. We share the same goal of demonstrating how one can live a beautiful life, in spite of huge daily challenges.
So, my dear friend from social media, Claire Wineland, you are now able to take your first real breath, trouble-free.
You leave a legacy that will live on. I hope to continue sharing your important message: “Death is inevitable, but living a life we are proud of is something we can control.”
Rachelle Ledbetter has lived in Three Rivers for 32 years. Rachelle has allergic bronchopulmonary aspergillosis (ABPA) and bronchiectasis. She is dependent on supplementary oxygen 24 hours a day while awaiting a double lung transplant.