Alice Sturiate was not yet thirteen when she died suddenly, about a year ago, her head resting on her school desk as she laughed at a classmate's joke. She had suffered from a devastating disease—spinal muscular atrophy—that had worsened over time, first stealing her ability to walk, then to stand. She had endured four operations. Her poems, diary entries, and personal reflections have been gathered in this small volume, which became a bestseller within months.
The book teaches us to know Alice and to understand her. It draws us into loving her as those who knew her did. Everyone spoke of her joy, her warmth, her smile. That smile appears often in the book's photographs—luminous, saying everything without words.
But these pages offer something more. They let us come close, as close as we can manage, to the mystery of Alice and the inner force that drew her toward those around her. Alice had the sensitivity and enthusiasm to express it. She observed nature, the people near her, and herself with an intensity that now burst into sparkling joy, now clouded into worry, now kindled admiration, now flared into outrage. Sometimes her imagination soared—she dreamed of the stars or of becoming an astronaut. Sometimes she gazed in wonder at a sunset, clouds, snow, the sea. Reading her words, we stop thinking about the wheelchair, the surgeries, the tears. Rarely does she speak of her suffering or her handicap. Her father recalls: "Alice smiled at the challenge. She fought her battle, faced doubt and frustration with few tears—as you'd expect—and with great courage, calm and clear-eyed. She always did. Everyone who knew her was struck by it. That's what made Alice so irreplaceable. In her we saw a measure that restored our own sense of proportion, the weight of our problems, the meaning of life and the joy of living it."
Alice's book "was born for the good of many: to sweeten the bitter and strengthen the fragile, to lighten the burden on the old and restore childhood to children; to make us all a little more patient and wise."
I wish this book were dedicated to every disabled young person. Because it is for them that Alice speaks: the need to love and be loved, the hunger for beautiful things—even the smallest ones that appear in the moments of everyday life—the love of life itself, of activity, of friendship.
Without knowing it, Alice gave voice to those who cannot speak for themselves. She knows herself. She has the gift of writing and does not hold back.
Her mother and father gave her the chance to do it. And she was held up by friends—so many friends—who surrounded her. Their presence was essential. She wrote: "A true friend is someone who is always ready to lend a hand, not just when they feel like it or when they have nothing else to do." And here is a little scene that sums it all up: "We stood there in a circle all together looking at the sea and joking around, then all of us in the water and back out again, all of us always together, like we were one thing."
— N. L., 1995