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.)”

The very first photo Justine took of Ray waking up and being readied by Rae for the day, April 2016.
The very first photo Justine took of Ray waking up and being readied by Rae for the day, April 2016.

 

An ALS diagnosis can initially lead to such a sense of isolation. Here, Ray sits with his eyes closed in the living room.
An ALS diagnosis can initially lead to such a sense of isolation. Here, Ray sits with his eyes closed in the living room.

 

Rae feeding Ray. “A romantic breakfast for two,” Ray jokes.
Rae feeding Ray. “A romantic breakfast for two,” Ray jokes.

 

Grandson Jack sits on Ray’s lap and listens to a story. Rae, with family dog Eddie says, “Family is the best medicine.”
Grandson Jack sits on Ray’s lap and listens to a story. Rae, with family dog Eddie says, “Family is the best medicine.”

 

Ray and his son Manu program an eye-gaze computer that will helps Ray communicate. Manu’s technological assistance allows him to be a part of Ray’s care.
Ray and his son Manu program an eye-gaze computer that will helps Ray communicate. Manu’s technological assistance allows him to be a part of Ray’s care.

 

Ray’s hands texting. The once-strong hands that delivered 2095 babies, held the handlebars of a bicycle for thousands of miles and created so many beautiful things have been reduced to one finger, with which Ray uses to communicate.
Ray’s hands texting. The once-strong hands that delivered 2095 babies, held the handlebars of a bicycle for thousands of miles and created so many beautiful things have been reduced to one finger, with which Ray uses to communicate.

 

Ray teaches daughter Lisa the Haggadah so she can lead the Seder.
Ray teaches daughter Lisa the Haggadah so she can lead the Seder.

 

Ray, who grew up in London, loves a proper “cuppa.” Here, his mother Jeanne, visiting from Hertfordshire, helps him drink tea. Ray says, “Keep calm and call Mum.”
Ray, who grew up in London, loves a proper “cuppa.” Here, his mother Jeanne, visiting from Hertfordshire, helps him drink tea. Ray says, “Keep calm and call Mum.”

 

Rae and Ray stand in front of a mirror. Ray calls his reflection a “stranger in the mirror.”
Rae and Ray stand in front of a mirror. Ray calls his reflection a “stranger in the mirror.”

 

Ray and Rae stand in the garden outside their home. “Early on, we promised to laugh every day,” says Rae. Ray says he’s “smiling every day. Crookedly but smiling, nonetheless.”
Ray and Rae stand in the garden outside their home. “Early on, we promised to laugh every day,” says Rae. Ray says he’s “smiling every day. Crookedly but smiling, nonetheless.”

 

Ray continues to pursue his love of cycling. Here, Rae and Eddie help Ray into his trike “of comfort and freedom,” Rae adds.
Ray continues to pursue his love of cycling. Here, Rae and Eddie help Ray into his trike “of comfort and freedom,” Rae adds.

 

Ray on his trike from afar on the horizon. Ray says, “Riding the trike lets me forget I have ALS. [I feel] free.”
Ray on his trike from afar on the horizon. Ray says, “Riding the trike lets me forget I have ALS. [I feel] free.”

 

Ray pedals his trike next to a giant tractor. Ray says, “[I rode] 31 miles last Tuesday. Not my usual 100, but ALS has given me the time to absorb my surroundings.”
Ray pedals his trike next to a giant tractor. Ray says, “[I rode] 31 miles last Tuesday. Not my usual 100, but ALS has given me the time to absorb my surroundings.”

 

Ray and Rae bike together down Race Street at sunset.
Ray and Rae bike together down Race Street at sunset.

 

Although he used to be a provider at the hospital, Ray is now a patient at Carle Foundation Hospital in Urbana, IL, where his local MDA Care Center is located. Here he takes a pulmonary function test.
Although he used to be a provider at the hospital, Ray is now a patient at Carle Foundation Hospital in Urbana, IL, where his local MDA Care Center is located. Here he takes a pulmonary function test.

 

Ray and Rae walk down the stairs of their home, hand in hand.
Ray and Rae walk down the stairs of their home, hand in hand.

 

Now that Ray has lost his ability to speak, he communicates via text messages on his phone. Ray wears a BiPAP mask, which aids his breathing at night, and “text[s] sweet nothings before bedtime.”
Now that Ray has lost his ability to speak, he communicates via text messages on his phone. Ray wears a BiPAP mask, which aids his breathing at night, and “text[s] sweet nothings before bedtime.”

 

The Spooners pose in front of Champaign Surplus with a check for MDA. “When Rae and I sat down to discuss a goal for our MDA fund raiser, we thought $10,000 sounded an attainable amount. Last week we achieved more than we ever thought imaginable, $80,000.”
The Spooners pose in front of Champaign Surplus with a check for MDA. “When Rae and I sat down to discuss a goal for our MDA fund raiser, we thought $10,000 sounded an attainable amount. Last week we achieved more than we ever thought imaginable, $80,000.”

This post originally appeared here on the Muscular Dystrophy Association (MDA) website.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

 

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