Claire Wineland, inspirational speaker and cystic fibrosis activist, dies at 21
By Jeff Ayers — / Death Wish Coffee Blog
'I CAN MAKE SOMETHING FOR THE WORLD'
On Sunday, Sept. 2, 2018, Claire Wineland was taken off life support after undergoing a successful lung transplant which led to a massive stroke which became the cause of her death. She had expressed to her family before making the decision to pursue the surgery that she wanted the quality of life over quantity. That had always been her mantra, and so she took her last breath surrounded by her parents and loved ones.
Claire Wineland changed the lives of everyone who met her, knew of her work, or heard her talk. I will never forget being able to speak with her on our podcast. She was a philosopher, and an inspiration to many, from those suffering from terminal illness to those just looking for their place in the world. Claire worked tirelessly to bring awareness to topics like mortality and illness and death. She will be missed but she will never be forgotten.
Claire Wineland had cystic fibrosis and was in the hospital for most of her childhood and adulthood. At age 13, she was put in a medically induced coma for 16 days, and when she finally came out of it she was given a new perspective on what she was going through, as well as others. Along with her parents, she set up a foundation, Claires Place Foundation, that was specifically designed to raise money to help families dealing with CF. There is no cure for the disease, and treatments can mean hours a day and months of prolonged stay in hospitals.
"It really takes your parents, and your family to be so involved. And the thing is, sickness isn't the only problem in peoples lives. So if you're a single mom, and you have two kids with CF, and both of them take ... That's eight hours of breathing treatments every day," she explained as a guest on Fueled By Death Cast.
Claire went on to explain the ethos behind the foundation:
"What about actually living your life right now? What about having support for going about your day to day life? And that's kind of what we get to do. And that's been a real kind of source of strength for me because I see how needed it is. And so I see that I need to get up and pull myself together in order to help it survive."
Claire did speaking engagements like podcast interviews and TED talks to spread her message of hope and understanding to so many.
"So I got to a point where I just realized that people who are sick are very dehumanized. People don't see them as full, complex beings. With wide ranges of emotions, and life experience, and valid things to share with the world."
Through her public speaking engagements, YouTube videos, and social media she was able to touch so many people in the world and create an inspiring conversation around sickness and death that many people shy away from.
Death is inevitable, and it terrifies human beings to the point that most people don't ever want to think about it. The same goes for people dealing with terminal illness or life-threatening disease, and Claire helped people understand and deal with those topics and emotions. She had an incredible outlook on both life and death. Claire was a true philosopher and inspiration, and accomplished so much in such a short time: she was only 21.
I asked her specifically on the podcast where she draws her strength from, and she answered that she was a big science nerd. He infectious spirit and smile showed through as she explained what drove her forward.
"There is so much complexity in everything. For me, it's kind of, you zoom in deep enough to any life, to any form of life, and you find complexity. And I kind of applied that to my own life. That it's small, it's short.
You're not that important, and I mean that in a loving way. You know what I mean? Me being sick, that's not that big of a deal. I'm not that important. I have something to give, I have something to offer — you know what I mean? And I can make something for the world."
HER LEGACY LIVES ON
Claire's wonderful message can still be heard through her many talks and appearances documented on YouTube. I cannot express personally how much she affected my life and my co-host Dustin, and all of us at Death Wish Coffee. I truly love being able to talk with so many different people on our podcast, and Claire's episode is the most inspiring conversation I have ever had the privilege to be a part of.
Plus, her foundation will continue to live on in her name and provide much need care and support for families dealing with the same things Claire herself dealt with so many times. Last year, Death Wish Coffee partnered with Riki Rachtman to help raise over 20,000 dollars for Claire's foundation. If you would like to make a donation, you can follow this link here: clairesplacefoundation.org
Listen to our full interview with Claire: