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year after my mother’s death from complications of Multiple Sclerosis, I
set out to understand her. She had lived with MS for twenty years, yet never
spoke of what life with that mysterious, debilitating illness was like;
it was only after she was gone was I ready to ask.
Worldwide, MS is thought to affect more than 2.1 million people. There are approximately 400,000 people living with the disease in the United States alone. For each person diagnosed, there is a community of people whose lives are directly impacted by MS.
Since May 2011, I've been meeting some of them; and somewhere along the road, a dialogue about the painful dissonance between who we are and the bodies we inhabit began.
From a young woman in Albuquerque taking a controversial, holistic approach to self-advocacy, to a letterpress shop owner contemplating Kandinsky on Asheville’s lonely riverfront to a tattooed Tennessee frat boy struggling to reconcile the roller coaster of illness and vitality, I’m invited into the lives of those with an unpredictable disease and a story to tell. And through this journey, I'm revealing a curious difference between curing and healing.
This book will unite photography from my travels with portraits of individuals touched by MS, reexamining what we believe about the meaning of 'incurable' and the fears surrounding it. Their stories will be available in 2016. So far, thousands have been raised and connections with experts, institutions, healers and leaders have been made in the journey to get these stories out there.