I want to assume that life’s goals are about happiness. We want to live and be happy. Ethical hedonism is the view that our fundamental moral obligation is to maximize pleasure or happiness. Ethical hedonism is most associated with the ancient Greek philosopher Epicurus (342-270 BCE.) who taught that our life’s goal should be to minimize pain and maximize pleasure. What happens when one is born with an illness that is life changing? A colleague asked me to check out the story of Claire Wineland. It is only fair that you check out the documentary before proceeding with the reading. Claire was born with Cystic Fibrosis (CF) and this was diagnosed at birth.
There is so much potential in being alive that we have to tap into
Cystic Fibrosis is an inherited life-threatening disorder that damages the lungs and digestive system.Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts and passageways. It is basically a high maintenance illness, you need lots of cash to manage it. Claire lived a life of fulfilment and meaning, not necessarily a healthy life. She infact said,’Being healthy doesn’t matter, it’s what you do with the health that counts’. Many at times it’s when life beats us up that we get clarity and think about giving back to the world. I for example look at writing as Beauty in the chaos to simply say, what do I make of the chaos which is illness to share with the world. In my previous post,I elucidated on a life of meaning and one of happiness. Unknown to me, I was writing about Claire before I knew about her. She was literally living in the face of mortality because of the life expectancy but how she turned around her short life is amazing. She was radiating with beauty and hope. She had a philosophy on life in illness emphasizing that sick people have something beautiful to give to the world. In the 21years that she lived on this earth, her life reflections were that of an eighty old person. Claire was one person who you stop and think, what am I doing even with my life.
Recently, Facebook was reminding me of my thoughts in perfect health and I was wowed, life has a way of following up with us
I write not to escape my illness but to share my thoughts and viewpoints with the world and the response for me is what keeps me going
One of the major reasons I was reluctant to write about Claire is the end which is sad and personal (succumbed to a stroke). All in all, Claire teaches us of the potential in being alive and urges us to tap into it. You don’t know who you can bless with your story. Claire didn’t die faster than us, she lived more than the rest of us are and lived right. May you become a Claire in life’s pain and make beauty out of it.