Dying, Redux

I have tried to gather a few different perspectives on what it feels like to die or go through the process of dying, including my lengthy interview with Michael March just prior to his death not long after I met him online. Below, I present a different perspective entirely from Claire Wineland, a Cystic Fibrosis patient who had been advocating about her disease for quite some time. It is a video I found on YouTube that she uploaded a while back, explaining her own experience with technically dying on a number of occasions from complication arising from her disease.

As you may know, I feel close to the Cystic Fibrosis community. I have participated in fundraising walks for a number of years in honor of a boy who is my daughter’s age. He’s a quick-witted, funny kid who I always appreciate being around and this last summer was the first time he could actually participate in his own fundraiser. It was a huge milestone because his immune system was considered strong enough to risk being around other patients which, even in an open park, had previously been a deal breaker. And of course, being a lung disease, there are many issues regarding CF that I find easily relatable. When I was searching for lung-related topics, finding Ms Wineland’s video seemed like a natural result.

Her optimism was glowing and I found that she had a vast web presence, including a new Go Fund Me campaign to help raise money for a double lung transplant and the following physical therapy. I was on board, just in time to contribute and follow her story as she got a donor last month and went in for surgery. It was an amazing, inspirational story.

Last night, Claire Wineland died of a stroke she experienced while recovering from a successful transplant. She is quoted by her mother in a beautiful obituary on CNN as saying, “After you die, you’re closer to everyone you love because you’re part of everything.”

Her contribution to the discussion on death will continue, perhaps more poignantly, because these videos of hers and the foundation she established at age 13 will live on. And her life will continue to resonate through the more than 50 people she will have been able to help as an organ donor. Death is not the end of her story.

Ironically, perhaps, my two-piece article, Fear and the Reality Check, was published today on LungCancer.net. In it, I discuss how to assuage the fear of death and dying in as concise a manner as I could manage, trying for practical advice that addresses various aspects of what causes that fear.

In the meantime, I suggest following some of Ms Wineland’s advice: “Life isn’t just about being happy. … It’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given.”



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