The Process of Being Alive


Daniel S. Levine

Claire Wineland laughs in the face of death. In fact, she’s made a bit of a career doing this on her own YouTube channel and through speaking engagements ranging from TedX talks to corporate gigs as she talks about weighty matters and cracks herself up along the way.

Now 20, and weighing in at less than 100 pounds, she often sports an oxygen tube across the base of her nose that’s reminiscent of Salavdor Dali’s mustache as it wraps around her face.

Wineland has defied the odds. Born with cystic fibrosis, a rare genetic lung disease, doctors did not expect her to live beyond age 10. Nevertheless, at age 20, she’s spent about a quarter of her life in the hospital. She uses a cabinet full of medicines on daily. Breathing takes a lot of work. To get the up to 5,000 calories she needs day, a tube delivers nutrition to her while she sleeps. She gets daily treatments with a vibrating vest to loosen the mucous in her lungs. And of course, there’s the oxygen she gets throughout the day as her lung function is at about 40 percent, a situation probably worsened by her frequent laughter.

Defying the odds, though, doesn’t mean she can avoid the inevitable. Nevertheless, despite the progression of her disease, Wineland has devoted herself to helping others through Claire’s Place Foundation, the organization she founded as a 13-year-old to help other CF patients and their families. In September, Global Genes honored Wineland as a Rare Champion of Hope for her work to raise awareness about cystic fibrosis and living with a rare disease.

Wineland’s YouTube channel is a gift to anyone who takes the time to watch the many short videos she posted there. It features her discussing such topics as death, dying, and what it’s like to be in a coma. There’s even a hospital room video where her father plays guitar as she sings—what else—”Knocking on Heaven’s Door.”

Though all of this might sound like the morbid musings of an angst filled teen, they are anything but. When she pulls a volume of poetry from her oxygen bag, it’s not a dark volume from Edgar Allen Poe, but instead it’s a one by the dharma bum Allan Ginsberg. She is an angelheaded hipsters burning for the ancient heavenly connection to the starry dynamo.

There’s an intimacy to her videos as Wineland talks directly into the camera. She pulls in the viewer with her big eyes and infectious smile. And despite her choice of topics, her message is one filled with affirmation of life, embracing everyday wonders, and the need to savior the time we have.

For Wineland, that involves embracing all of life’s experiences, the good with the bad. “A lot of time people try to negate their own experience of life,” she said. “They try to negate their own pain, or negate their own joy, or negate what their personal experience has been.”  

Through Claire’s Place Foundation, Wineland has devoted herself to helping others. She and her family know firsthand all of the struggles that come with having cystic fibrosis and not just the toll takes on the person with the disease, but the emotional and financial toll on the family as well.

When you are living with a progressive and fatal illness, it’s easy to be focused on yourself, particularly when caring for yourself involves such an intense daily regiment as cystic fibrosis does just to minimize the inevitable progression of the disease. Wineland, nevertheless not only embraced helping others. What she discovered in the process was that in so doing, it became easier to take care of herself.

“There came a point where I had to choose to stop caring about myself in a certain way, to just care about something bigger, a bit more than me and my own health. The moment I did that, the moment I put myself into my work and having a responsibility and having a mission, all of a sudden, it became so much easier to take care of myself,” she said. “It became so much easier to show up for myself because I wasn’t doing it to fix myself. I wasn’t doing it for some arbitrary goal in the future. I was doing it to was doing so I could be healthy enough to get back to doing what I thought was important.”

Wineland rejects the notion of a bucket lists—that there’s an itemized list of life experiences to check off like shopping for groceries so you can feel you have lived a full enough life so you can be at peace with dying. “What I found is that I don’t have a need to go out and conquer the world, and jump out of planes, and do all that crazy stuff,” she said. “What I love instead is to live my life wholly, and with meaning and connection, and go through the process of being alive.”

November 8, 2017

Filed Under: Living, People & Organizations, Rare Community

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