By Tracie White in Stanford Medicine.
For three years, Whitney Dafoe’s world has been a darkened room at the end of a hallway in the back of his childhood home. An insidious disease, one with no known cause or cure, has slowly stolen his life from him, turning his body into a prison.
He doesn’t eat. An IV line delivers nutrients and liquids and medicines to keep him alive. He doesn’t speak. He’s unable to write. Any motion exhausts him. Eye contact hurts him. He can’t bear to be touched.
Last December, in desperation, he used Scrabble tiles to communicate, laboriously lining them up to spell out: CANT TAKE CARE OF MYSELF; DONT KNOW WHAT TO DO. At the end of the month, emaciated due to his inability to digest food, he selected five final tiles and spelled out: D, Y, I, N, G. Then he rang a bell for his father.
“My son Whitney woke me this morning to inform me that he is dying,” his father, Ron Davis, PhD, posted on the Facebook page for the Stanford Chronic Fatigue Syndrome Research Center that day. “Whitney has severe chronic fatigue syndrome (CFS). He did not say he is dying — he cannot speak. He did not write he is dying — he cannot write. He used Scrabble tiles to spell out his message. I did not answer him — he cannot tolerate anyone speaking to him.”
As paramedics wheeled Dafoe into the back of an ambulance that day, he opened his eyes, and for the first time in three years, stared awestruck at the wide, blue sky.
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