The older I get, the more I find that it’s the young people that are saying what is most interesting, sharing the most thought provoking ideas, demonstrating the most courage. Claire Wineland was one of those young people: fascinating, thought provoking and supremely courageous. Born with a genetic condition, she lived her entire life battling a terminal illness. She died at age 21, but not before she inspired many around the world.
Cystic fibrosis is a condition where the body produces too much mucous and causes various complications. It is extremely difficult to live with and life expectancy is short. What little I know about it sounds pretty grim. But to listen to Claire Wineland speak, you wouldn’t know it. Not only does she come across as upbeat and full of life and positivity in her videos, she offers a whole other perspective to dealing with terminal illnesses.
She used her short life to shed light on what it was like to live with a terminal illness; not to garner sympathy, but to do the exact opposite! She wanted to change the way people viewed sickness itself. She lived her entire life with daily medications, frequent hospitalisations and all sorts of medical procedures. At 13 her lungs failed, she was put into a medically induced coma and given a 1% chance of survival. She recovered and founded the Claire’s Place foundation, by age 14 she was doing talks on TED x.
She died at 21 on 4 September 2018 from complications following a lung transplant procedure. This video of hers was published after she passed away and serves to remind the world about the futility of both pity and self-pity.
What is fascinating about Claire is the completely different perspective that she had of life. She chose not to let her illness define her. In this video she speaks passionately about how pity robs the sick of their power. It is startling how she speaks about experiencing some of her best moments in the hospital. At 8 she and her nanny completely redecorated the hospital room she was in; turning on its head, the idea that hospitals are grim, unhappy, sterile places. But does the life of sick people have to be ‘inherently less joyous,’ as she says? There is still so much beauty and joy in life, but instead of embracing all of this, we keep waiting: to be healthy, to be wealthy, to find our passion… There is much to be gained from suffering, she says and that is true! We all have something to give to this world, something to add to the sum of human experience she says.
I have always felt that pity is a pointless, corrosive, self-indulgent and myopic emotion; particularly self pity, so I agree with this young woman. Why should we think of those who are sick as anything less? Why pity them? Why let them pity themselves?
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