How an ALS Diagnosis Changed This Family’s Life: An Intimate Photo Story
Ray Spooner, a certified nurse midwife, who has ushered thousands of babies into the world, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) just a few months after dousing himself in the Ice Bucket Challenge of Summer 2014. An avid cyclist and fitness enthusiast, Ray knew he had little time before his physical capabilities would be taken from him. Shortly after his diagnosis, he made a bold decision to take a bike trip (which Ray affectionately referred to as “A Little Ride”) from America’s west coast to the east to raise funds to support MDA research and services for people with ALS. Ray lives in Urbana, IL with his wife of 33 years Rae. Together, they collaborated on the following photo essay documenting their daily lives as Ray’s disease progresses. The following 18 photographs are just a fraction of the hundreds of shots photographer Justine Bursoni has taken over the last two months. They show a life, a marriage, a family and — of course — love.
“Fairly early on after I was diagnosed, a friend texted and advised that I not look up pictures online of people with ALS,” Ray said. “It was of course too late by then. Today, I no longer have to look on the internet for pictures of what ALS can do; I just have to look in the mirror. If I could, I would be taking photos myself but I can’t hold a camera anymore. Periodically, I will ask my wife Rae to take the odd photo but never to the extent I would if I could myself. Then as chance would have it, I was contacted by someone I’d helped take care of during pregnancy who had an intriguing proposition. Justine Bursoni is a professional photographer and wondered if I would be willing to let her document moments of our everyday life as our ALS journey unfolds — through to the very end and beyond — ultimately embarking on a process of tracing my own mortality. I didn’t have a second’s hesitation. Sometimes Justine will come over and be a fly on the wall documenting our daily activities. Sometimes I will ask for a specific shot that I can’t take myself. And sometimes the whole endeavor is put on hold when our grandson Jack sits in her lap with a book. (It’s hard to explain to a 21-month-old that the woman with the camera isn’t really there.)”
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