In November 2013, my husband Jon ran the New York City Marathon. In February 2014, he was hospitalized for a seizure. At 51, he discovered that he had Creutzfeldt-Jakob disease, a monstrous, degenerative brain disorder. Within a week, Jon lost the ability to move his limbs and speak. But on Valentine’s Day he was still able to hold my hand and form his lips into a kiss. This photo, taken by our son, Henry, captures the final page of our 28-year story, where we felt the warmth of each other’s skin, took in each other’s gaze and began our goodbye.
This website was made possible by a generous donation from Cookie Stivison, in memory of her husband Tom Stivison, and a grant from the Centers for Disease Control and Prevention.