hold on

holdon

Music was her life. As a child she had run and jumped and played, but as she grew older the disease encoded in her DNA began shaping her body, and over time leaving her limbs increasingly useless…hands, arms, and legs noodle like and unresponsive to her wishes….unable to hold on to someone’s hand, and making standing impossible without holding on to crutches for support. It didn’t happen overnight. It was gradual, the strength ebbing a little more each day. Family photo albums revealed the truth. A young child jumped rope, played hopscotch and softball; looking at the pictures, you could almost hear her giggling and screeching with delight as she played tag with her friends. Only later, when she reached adolescence, did the braces, the crutches, and ultimately the wheelchair, banish her to the wings, while others moved their bodies effortlessly on center stage. Thankfully the disease would not reach her heart and lungs for years to come. But when she sang, she felt free and unbound by the disease that gripped her body. When she sang, she soared, holding on to each note fully, cherishing the place where the music took her. She deeply loved Brahms‘ Requiem. And when she took her place as a soprano in Robert Shaw’s chorus, performing the masterpiece at San Francisco’s St. Mary’s Cathedral, I cried for joy. Because in those moments, her inner self ran unchained at the speed of light, living fully outside her body’s limits, roaming freely and playing, defying all gravity’s laws.

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