The Most Important Life Lesson I Learned About Regret From a Girl With Cystic Fibrosis
Many years ago, I interned for a professional writer over one summer. As a lowly student, I mostly ran errands, conducted research, pretty mundane stuff, really.
But one day, I was asked to write a brief letter about an autobiographical book by a girl named Claire Wineland.
Cystic Fibrosis
Claire was born with cystic fibrosis (CF), a genetic disease that currently has no known cure. People with CF have difficulty breathing due to mucus buildup and also have issues with other major body organs, such as the liver, kidneys, and intestine.
For those unfamiliar with CF, it is chronic, deadly (current average life expectancy: 37 years), painful, and requires huge effort/full-time maintenance to keep sufferers alive.
I once tutored a little girl named Chava*. She, too, had CF, but because she was only six at the time, she looked perfectly healthy and I had no idea she had this condition.
That is, until I visited her at home one day and halfway through the visit, she had to go inside her room for her daily lung treatment, which involved being hooked up to a vibrating machine for an hour. The machine was designed to shake loose the thick mucus in her lungs, and then afterwards, her mom would pound her on the back so that she could cough it up.
Her mother told me about Chava’s diagnosis and showed me the daily pills that she had to eat. It was inconceivable to me that bright, happy Chava had such a deadly diagnosis, a cruel disease that would, over the years, put increasing limitations on her ability to run and play, sing, dance, move, live.
Claire’s autobiography
I read Claire’s book before I met Chava, though. At the time, I didn’t know anything about CF, but learned a lot about how difficult the condition was through Claire’s story.
Afterwards, I looked her up and found that she’d given a TED talk and was an activist and entrepreneur who had her own non-profit organization (she also has her own wikipedia page, look it up!)
Now, as a voracious reader, I’ve read many, many biographies and autobiographies. I’ve read of people who’ve suffered more or accomplished more than Claire, and perhaps Claire’s story would have just been another nice story to file away in the back of my memory if not for one thing.
Even now
I finished reading Claire’s story, finished my write up on the book, and went back to the other odd jobs I had to do when I suddenly had the urge to read my Bible. I pulled it out, flipped to where I’d last left off in the book of Joel, and read:
“Even now,” declares the Lord, “return to me with all your heart, with fasting, weeping, and mourning. Rend your heart and not your garments. Return to the Lord your God for he is gracious and compassionate, slow to anger and abounding in love, and he relents from sending calamity. Who knows? he may turn and relent and leave behind a blessing… (Joel 2:12+)
It was those two words: EVEN NOW, that got me.
Many times, in moments of despair, I think to myself that I have wasted my life, wasted my time, accomplished nothing worthwhile, and that even if I start now, I will never be what I could have been.
But those two words from that verse resonated with me: EVEN NOW…even now, it isn’t too late. Even now, you can still change. Even now, there are things to appreciate.
That verse made me recall something that Claire Wineland had written in the book I’d just read:
Because CF is a progressive disease, Claire will get sicker as she grows older. At age 7, Claire was much healthier than she was at 15 (when she wrote the book). But Claire said, instead of regretting that she is not as healthy as her 7-year-old self, she thinks about how she will feel when she is 20 and how 20-year-old Claire will not be able to do the things 15-year-old Claire can do.
So instead of crying over her lost 7-year-old self, Claire said she would enjoy her healthier-than-20 15-year-old present, and squeeze every drop of happiness and experience she can get out of it, now.
Today’s the day
When I went home after my internship that day, I wrote in my journal:
Who knows if a year from now, or sooner than that, I might be struck with a pain, a disease, an infirmity? Who knows if my health and wholeness is not a fleeting thing I will only get to enjoy now? That’s what I should be doing, like Claire, appreciating and using what I have, now.
So basically, I heard God telling me, “Even now, it’s not too late. Even now, you can still turn around and serve Me and do what makes Me and you both happy.”
Today, Claire Wineland is 21. I have also grown older, and have faced/am facing that health crisis that I speculated about when I was a lowly intern reading the autobiography of a girl with cystic fibrosis.
My condition, unlike Claire’s, has the potential to improve, but it may not. I cannot be sure. But that is not what I need to focus on today.
Today, it is more important than ever to remember the lesson of EVEN NOW.
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*not her real name
