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Claire Wineland, Cystic Fibrosis humanitarian activist, speaker and author, said in the RISE series profile with my friend Cheryl: When you’re dying you learn to “live slowly”. The soulful 21-year-old said that you can be present “to the life in front of you”. Sincere wisdom coming from the young woman old enough to be my daughter. Claire profoundly moved and touched my heart.
Claire passed away on September 2, 2018 of a stroke following a much-needed lung transplant. I didn’t have the privilege of knowing Claire. Her radiant light made a profound difference in the world in her brief 21 years.
I would like to believe that Claire discovered her own infinity within her time with us. Some infinities are bigger than others. Hers was as infinite as her soul. She declared in a speech before her passing that “I’m proud of my life.” Indeed, Claire. We’re all so proud of you, and greater for the blessing your life has been and continues to be.
Rest in peace sweet Claire, “And flights of angels sing thee to thy rest.”
I said to a friend that we needn’t be sad for Claire’s life ending as it did. We can all celebrate Claire and her life. She lived her life with more passion, more love, and more purpose than most of us ever will. I would like to think that Claire is now free of her body—that her soul has its full self-expression.
Claire dedicated to the miraculous life of service and making a difference although, I have sadness not for her life lived. I’m sad that she never had the privilege of growing older, like I have– aching knees and faded youth. I’m sad that she never got to fall madly and deeply in love. Falling in love is still possible for me, because I’m still around.
Claire told Cheryl that even amidst her great suffering and pain from over 30 surgeries and her progressive disease that “I can still be okay”. So what it is to be human might not be about ending human suffering like what Werner Erhard looks at. Perhaps, suffering is like fear in that it is all part of the human design, what it is to be human.
Maybe, having a life that you’re proud of, discovering your peace like Claire is finding the immense beauty in life’s vast imperfection – wabi-sabi as Cheryl would say.
I get the power acceptance and forgiveness from Cheryl in wabi-sabi: “Life is imperfectly perfect.” I discovered that in my relationship with my Dad. I reconciled the imperfection in my fearful childhood. It aligns with the Buddhist tradition that to live life is to experience suffering.
Everyone suffers. Think of suffering as a spectrum, where everyone’s suffering matters in the good sense. It’s what makes us human. So how we create ourselves from suffering is making our peace, our victory over ourselves.
In one of Claire’s final speeches, she said, “Have your life be a piece of art…” Amen. Claire was wise beyond her years. Make your life a work of art. Create who you are in the world as an expression of art. Have your art be wondrous. Have your art move and touch others, now and for generations to come.
Werner reminds that we create who we are going to be in any moment. We all get to choose who we are. I didn’t suffer like Claire. Yet, I know what it’s like to sentence myself as never good enough from my childhood. And I was blessed by the art of Mom and of Sensei Dan. Claire said, “Live slowly.” Mom kept saying, “Jonny, slow down.” Find my peace within.
Sensei saw and listened for the greater man within me that I buried when I was the frightened 8-year-old. Sensei always said, “Just train.” One Sunday morning in Aikido class he said to me, “You’re a better teacher than me.” I got it. Sensei had created me as a work of art. That artful life also gives me peace. And I’m forever grateful for Sensei.
From Claire Wineland, who lived her inspired life: Create your life as a work of Art. Your Art won’t be perfect– that’s its distinct and inherent beauty. Create your life lived as a piece of Art. Discover your peace in your work of Art.
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Photo credit: Pixabay