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“When you pity sick people, you disempower them.” – Claire Wineland

Claire Wineland spent much of her life in hospital rooms but there is no need to say, “awwwww…” because she may have had more moments of happiness than anyone. The author of Every Breath I take: Surviving and Thriving with Cystic Fibrosis reminds us that society makes us falsely believe that because someone is sick, their life is inherently less joyful. Life does not cease to unfold when one’s experience does not match those of his or her classmates. “We cannot keep teaching people who are sick that they need to be healthy before they can live their lives.”

I can tell you from experience that you don’t lose your sense of humor or your imagination just because you are no longer out dancing. In fact, one may develop more of a sense of humor and a keener imagination in quasi-isolation. It may appear that some folks are on the sidelines when nothing could be farther than the truth. None of us walking this earth are ever on the sidelines, whether living with a condition that insists you stay away from light or autistic and unable to communicate with those around you. The validity of your soul’s experience is profoundly assured simply because you are here, right now, to learn, teach and grow.

Claire Wineland, Glamour Magazine’s 2018 college woman of the year, was an advocate for people with chronic conditions. During a Ted Talk she debunked the myth that a hospital room must be cold and sterile. She decorated her hospital rooms with lights, throw pillows and created magical environments for herself. Claire glowed during these talks, telling the crowd, “I am 100% satisfied with my life.”

I 100% believe her because I can attest that like Claire Wineland, some of my happiest times have been when I was pulled out of ‘normal life’ for treatment of an auto-immune condition I have had for years. Polymiocitis causes inflammation of the muscles and consequently, weakness and I have been struggling with this since I was twenty-eight years old, which is nearly half of my life. I have the smile lines to prove that much of that time has been spent laughing.

A decade ago, I went with my mother to Mount Dora, Florida in search of a cure beyond what specialists at USC, UCLA, Duke and the University of Kentucky had to offer, something besides Prednisone, Imuran and Immunoglobulin. For six weeks we stayed in a rented house, with a detoxifying sweat box in the middle of the living room that I was to get in for 30 minutes a day. My mother and I met a whole new breed of people in Florida, from the alternative medical doctor with his freshly peeled face and fascination with colon cleanses to his young German girlfriend and nurse who reveled in the job of gatekeeper to her sought after lover. We became fast friends with an unconventional couple that ran a bed and breakfast up the road, who regaled us with tales of seances and psychic mediums. Most importantly my mom and I took long walks every evening beneath the dripping Spanish Moss and danced in the kitchen to Toby Keith until we sobbed with laughter.

No, don’t pity us who may to some seem pitiable, because we may just be having more fun than anyone. You certainly don’t want to be the downer who makes us think, even for a moment, that there is something wrong. That sad look in your eyes, or comment that we should be commended for stepping outside as we are, not perfectly aligned with the healthy bodied masses, may be the only time we do feel a pang of grief for having to spend much of our precious time on earth at home or in hospitals. Never make the mistake of assuming another person’s life is not full and constantly unfolding with great depth and nuance, no matter the circumstance. If you think that a disability means you can’t accomplish anything, you don’t know anything about Flannery O’Conner, Carson McCullers or Presidents John F. Kennedy and Theodore Roosevelt. We are so much more than our fragile flesh and fickle blood.

Claire Wineland died last month after a double lung transplant. Her lifetime of activism will live on through the foundation she created, her funny YouTube videos and her generous spirit. Farewell, sweet princess. Thank you for your service.

Erinchandlerauthor.com


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