Cystic fibrosis is a terrible disease that robs children and young adults of their ability to breathe. I watched my cousin Meagan struggle with breathing treatments and feeding tubes while still doing her best to maintain a normal life before she lost her battle with CF 21 years ago.
So when I read the story of Claire Wineland, a 20-year-old from California who is facing CF with an incredible attitude and a measure of wisdom beyond her years, it resonated with me.
Ask what’s on her bucket list, and she’ll say she doesn’t have one.
Fixating on a checklist of goals before she goes “sounds exhausting,” she says, especially “when you’ve been dying your whole life.” Instead, she’d rather focus on doing all she can in each moment.
It’s tremendous wisdom from a young woman who has spent, cumulatively, years of her life in the hospital, undergoes hours and hours of breathing treatments a day, and eats more than a regular person should just to maintain her slender frame (and still relies on a feeding tube at night for more nourishment).
Here’s what CF does to a patient: the body produces so much mucus that it blocks airways and causes bacteria and infections to become trapped in the lungs. The mucus also causes the pancreas to fail to produce the enzymes the body needs to process nutrients and break down food.
CF is a genetic disease: for a child to have the disease, both parents must carry the gene. The disease affects 70,000 people worldwide, 30,000 of those in the United States, according to stats from the Cystic Fibrosis Foundation. There is no cure for CF.
Since Meagan passed away in 1996, the medical community has made some strides in allowing CF patients to lead longer, fuller lives. New clinical trials for treatments are coming down the pike regularly, and more lung transplants have taken place. New medications and treatment plans have allowed children who have CF to live to adulthood.
Claire Wineland still suffers debilitating infections and relies on oxygen to get through the day, and she even spent two weeks in a come when she was 13. But through all her struggles, she has learned what she believes is her purpose on earth.
She’s on a mission to normalize sickness, push back at those who pity her and have a meaningful life for however long it lasts…
Still, she says, she must train people to feel comfortable around her.
“I can’t just expect people to know what to say,” she says, “I have to make them see me as more than my illness.”
Maybe what we can learn most from Claire is to treat sick friends and family as people and less as pity projects. Love them for who they are rather than for their sickness. Help them when they’re in need, but help them more to live their lives to the fullest. Pray for them and share joy.
Until we find a cure for things like CF, cancer, and so many other terminal diseases, we can help others around us have joy and fullness in their lives. What a way to give back!