There was a movie called “Five Feet Apart” that reminded me of the courageous and inspirational story of Claire Wineland. Honestly, the documentary above is much better than the movie, but it reminded me of Wineland’s story.
It’s an exceptionally potent reminder of how we need to live life to the fullest, even though we might die tomorrow. I really don’t know of any better example of that than Wineland.
So, trust me on this one. This film is only 40 minutes long. Promise me that you will schedule some time to watch in its entirety and tell me if it doesn’t change your perspective on life. If it doesn’t, I would be interested to know and will review the comment section.
Claire Wineland, Inspirational Speaker Extraordinaire
Wineland was an inspirational speaker and YouTube sensation who sadly died September 2, 2018, not from cystic fibrosis, which she was born with, but from a stroke following an otherwise successful lung transplant that would have extended her life another five years if successful.1 She was 21.
At age 13, Wineland founded the Claire’s Place Foundation2 to help families with children who, like herself, struggle with cystic fibrosis — a progressive and terminal genetic disease that causes an overproduction and buildup of thick, sticky mucus in the lungs and other organs.
The disease requires daily breathing treatment for up to five hours a day, and children with cystic fibrosis typically end up spending a lot of time in the hospital due to respiratory distress and chronic infections. Wineland is said to have spent about a quarter of her life in the hospital.
In 2016, she received the World of Children Youth Award3 for her foundation’s support of children with CF and their families. At the age of 19, Wineland launched CF University, an online resource for children where they can learn more about their disease.
Mere days before her surgery and untimely death, Wineland gave thanks to the thousands of people who donated nearly $ 268,000 to her Go Fund Me campaign to pay for the surgery that she and her family otherwise could not afford.4
The transplant surgery took nine hours, and went well. However, shortly afterward, she suffered a massive stroke on the right side of her brain. She was placed in a medically induced coma, from which she never emerged.
A Life of Purpose
In 2016, Wineland appeared in an episode of “My Last Days,” (above) a limited CW docuseries hosted by Justin Baldoni, featuring people living with terminal illness.5
“My name is Claire Wineland. I’m 18 years old,” she says. “I’m living with something called cystic fibrosis. Doctors say I have around a year left to live, but that doesn’t really matter to me because death is inevitable. But living a life that we are proud of, that is something we can actually control.”
According to Wineland’s father, she’d always been a positive little girl, but something happened when, at the age of 13, she went into lung failure and slipped into a coma for 17 days. When she emerged, she had a new level of acceptance about her, and an attitude of wanting to enjoy life as much as she could, all while knowing her days were numbered.
“The only thing you’re told when you have an illness is, ‘Oh, I’m so sorry … Your life must be horrible.’ Those exact words, over and over and over again. That gets so cemented into your consciousness. What kind of weird belief is that?” Wineland says.
“Most 18-year-olds do not have to deal with what I have to deal with specifically, no. But everyone has to deal with their own pain. The absolute truth is that I don’t think the pain I’ve been through is any more severe than the pain any other individual has been through. It might be more physical, but I’ve also had the incredible gift of having people who genuinely love me giving me so much mental stability and strength.
We have to realize that we are part of something bigger. What happens in our world, what happens in our society, is very literally a part of us because we’re so influenced by it, and it is so influenced by us … We can’t put ourselves in a bubble. We can’t detach from the world that we live in.”
Blessed With Life
Wineland’s mother is convinced her daughter came into the world with a mission to share the message of “what it’s like to be blessed with life.” “I think she felt, knowing she had a shorter life, she wanted to do more with it,” she says. I couldn’t agree more.
“I’ve always loved the idea of bringing life into places where people think life doesn’t really exist,” Wineland says of her idea to start posting videos of her hospital stays on YouTube. “Some of my favorite moments of my entire life were when I was in the hospital.” For Wineland, the hospital was a wonderful, cheerful place of healing and friendship. “My Last Days” does an excellent job of showing that.
But in addition to sharing her life on YouTube, Wineland had bigger goals: Public speaking. She says she was always drawn to public speaking and from an early age, she would stand up and give “very long monologues” during family gatherings.
During the filming of “My Last Days,” Baldoni surprised Wineland with an unusual gift: Private lessons by speech coach Richard Green, who agreed to help her polish her public speaking skills and craft a speech. Green tells Wineland he believes she’s “destined to impact and change the world.”
“Great public speaking is nothing more than having a conversation from your heart — something you do all the time,” Green tells her. “Number two, [speaking] about something you’re authentically passionate about, in order to help another person, help a group of people or help the world … That’s how you’ve lived your life and you’re not afraid of it.”
Wineland’s Message
When asked by Green what she would want her audience to get from her speech, she says, “I’d want them to have a moment of clarity. Realizing they actually have power in their happiness and in the way their life goes.” She ended up giving that speech at the Life Is Beautiful Music and Arts festival in Las Vegas, September 2015.6
“I can stand up here and tell you I am genuinely proud of my life,” she said during that speech. “I am so proud to be alive. I’m not saying that I don’t feel pain … sadness and suffering and loneliness, because that’s what it means to be a human being. I’m saying that pain, that loneliness and that sadness is beautiful …
We live in a society that benefits off of us continuously looking for happiness, for dreams and goals ‘out there.’ If we say ‘no, we’re not going to go looking out there for happiness; we’re alive and that is all we need,’ then we are beating the system! And we’re living lives we can be proud of. We’re living lives that make us happy.”
Wineland’s mother says:
“I think people see in her this light, that she was born with. Claire Lucia means ‘clear light,’ and I really think that embodies who she is. She’s very real, and I think some of these great things that are happening are because she relates to people on a different level … I think the biggest thing she’s taught me is ‘stay in the moment’ … Right this second is great; right this second is beautiful.”
‘CLAIRE’ the Documentary
Wineland’s life was nothing if not impactful, and even though she’s gone, her impact is bound to continue. Proceeds from “CLAIRE,” made by Oscar-winning documentary filmmaker Nicholas Reed,7 and produced by YouTube Originals,8,9,10 will go to Claire’s Place Foundation. According to The Wrap,11 Reed worked with Wineland for the last 18 months of her life. In a statement, Reed said:12
“When I met Claire, I was totally blown away. All my partners instantly said ‘she is the most amazing young person we have ever met, we have to do a film on her.’ And wow, with each meeting we were humbled more and more by her story.
We are honored to have worked with Claire and with the blessing of her family on this official documentary that encapsulates the true nature of Claire and her courageous battle to help dignify people who are sick.”
You can support Wineland’s legacy by making a donation directly to Claire’s Place Foundation. Last but certainly not least, you can honor her gift by living your own life with gratitude and purpose.
Optimism and having a sense of purpose in life has actually been scientifically shown to have direct benefits on health and is associated with increased life expectancy. Wineland was herself a testament to this, as she never expected to make it past her teens.
As explained by Wineland, your purpose is really all about what you believe you can give; how you can make a difference. So often, people get stuck in the limiting mentality of “I’m just one person, how could I possibly make a difference?” Well, you can. You might not be able to help everyone, but you can help some.
What are you enthusiastic about? What revs your internal engine? What comes really naturally to you? What do you enjoy doing most? Exploring your answers to these questions can help you discover your purpose, if you feel you haven’t found it yet.
Cultivate an Attitude of Gratitude
Wineland’s message also stresses the importance of cultivating an attitude of gratitude. In her speech at the Life Is Beautiful Music and Arts festival, she said:
“You’re never going to be happy with what you get unless you’re happy with what you have. And that’s what you have to do with your life. You have to look at all of it; all the pain, all the loneliness, all the beauty, all the friendship, the family, the sickness and the health — you have to lay it all in front of you and say, ‘Okay, this is what I have. It’s all wonderful. What can I make with it?”
Aside from augmenting happiness and life satisfaction, gratitude actually produces measurable effects on a number of bodily systems, including beneficial effects on mood and pleasure-related neurotransmitters, reproductive and social bonding hormones, cognition, blood pressure and more.
Importantly, it lowers the stress hormone cortisol and inflammatory cytokines, which are often elevated if you have chronic disease. Health benefits associated with gratitude include:13,14,15,16
A greater sense of pleasure, as gratitude stimulates your hypothalamus (a brain area involved in the regulation of stress) and your ventral tegmental area (part of your brain’s “reward circuitry,” an area that produces pleasurable feelings)17 |
Improved sleep18 (especially if your mind has a tendency to go into overdrive with negative thoughts and worries at bedtime) |
A higher likelihood of engaging in other healthy activities and self-care such as exercise |
Higher relationship satisfaction |
Improved work performance (in one study, managers who expressed gratitude saw a 50 percent increase in the employees’ performance) |
Reduced stress and emotional distress, in part by improving emotional resiliency |
Enhanced well-being and improved mental health by triggering the release of antidepressant and mood-regulating chemicals such as serotonin, dopamine, norepinephrine and oxytocin, while inhibiting cortisol |
Improved heart health,19 reducing the likelihood of sudden death in patients with congestive heart failure and coronary artery disease |
Reduced inflammation and pain |
Improved immune function |
If you’re not yet in the habit of taking note of what you’re grateful for, see “Gratitude makes you healthier, happier and more popular” for a dozen practical strategies to help build and strengthen your gratitude muscle.