Saturday, 15 September 2018

Every Breath I Take by Claire Wineland

Every Breath I Take
by Claire Wineland
and Chynna Levin

Summary: What is the experience of a child with a life-threatening illness? It can be so hard for parents, family, and friends to understand, because the experience of serious illness is so hard to articulate. That’s why Claire Wineland’s memoir, Every Breath I Take, Surviving and Thriving With Cystic Fibrosis, is so important. 
Claire describes with precision, honesty, and a remarkable sense of humor just what it’s like to live with an illness that is so often fatal. Claire explains exactly what it’s like to live as normal a life as possible while taking care of a condition that requires constant treatment and frequent hospitalization. 
Yet there’s nothing grim about Claire’s journey as she describes it. Claire finds the sunny side of life and the spirituality of her experiences in ways that captivate and amaze the reader. It’s impossible to come away from the book without a renewed sense of compassion and sensitivity toward anyone suffering from a serious illness.

I first found out who Claire Wineland was about three years ago, back when I started watching a show called Red Band Society. It was a show about sick kids living in a hospital, one of which had Cystic Fibrosis. Claire had Cystic Fibrosis and she would make videos about the representation of CF on the show and the portrayal of what it's like to be a sick kid spending a lot of time living in a hospital. 

I followed her videos long after the show ended, and she branched out making videos about her life and about CF and other topics. She made videos for a while on a youtube channel called The Clairity Project but later moved to another channel after the people who helped her set up that channel basically hijacked the channel, content and funds she'd make from it (I'm mentioning that specifically so if you check out her older videos, you know to support her actual channel, not the one stolen from her).

I guess what I'm getting at is, I stumbled across Claire and her story by chance but her and her story and her words got under my skin and stuck with me for years. 

You may know who she was too, or may have just seen her name trending recently on Twitter, but Claire died about a little over a week ago. She got the call that she was getting new lungs, and while the transplant went well, she suffered a massive stroke after the surgery and didn't recover. She was 21 years old.

I just felt that a little context was important before I got to talking about the book. The surgery, getting on the transplant list, the waiting for the call -- all of that happened after this book was written.

It probably seems like a horrible cliche to say a sick kid was wise beyond their years or that they were inspiring, but that really is a fitting way of describing Claire. Or at least the version of Claire she presented online (I have no doubt there was a whole other world to her that only people close to her got to see). 

She was genuinely inspiring -- and it feels okay to say that because that was one of the things she wanted for her life. She discusses it in the book, she discussed it on her social media, and her loved ones have discussed it since her death. She's one of the rare people that actually accomplished that want, and not even because she was a sick kid, but because of who she was and how she chose to deal with being a sick kid.

The book is short, but it explains in easy terms what CF is. What it's like to grow up with CF, as well as Claire's personal experiences of being a kid growing up with CF and being in a coma on the brink of death and what it taught her. She had a really unique outlook on life -- a clarity about life and death that so many people struggle to find, and that some never do.

Now seemed like an appropriate time to talk about her book. Her words, and her videos, and her foundation -- they are the legacy she leaves behind and they matter. 

I'm not sure what else to say really. If you want to know more about Cystic Fibrosis, or about Claire, or about what it's like to grow up with an illness like that then check out her book or her videos. And if you're able, check out her foundation. She was only 15 years old when she started it, but it has grown and flourished and done so much good, and her wish was for it to continue to do good even after she was gone.


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