Ray Spooner, a certified nurse midwife who has ushered thousands of babies into the world, took the Ice Bucket Challenge in summer of 2014 to raise awareness about ALS. At the time, ALS “was just of jumble of letters to us,” said Ray’s wife of 33 years, Rae. Soon though, those letters would take on a whole new personal meaning.
A few months after dousing himself with ice water, Ray was diagnosed with ALS. “The first thing I did was look it up online to see, ‘Okay, is there a special kind of Ray Spooner ALS that might be different from that other ALS that you hear so much about?’” he joked to People magazine in October 2015. “But alas, no.”
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. “An extreme diagnosis called for an extreme response.” He would bike from America’s west coast to the east – and raise funds to support MDA research and services for people with ALS.
Four days into a trek that Ray affectionately referred to as “A Little Ride,” he hit a curb and broke his arm, fractured three vertebrae and three ribs, and suffered a partially collapsed lung and a concussion. While he was recuperating, people across the globe donated miles to make up for the ones Ray couldn’t cover himself. Incredibly, just 10 days after his fall, Ray got on a specially made recumbent tricycle and finished the last leg of his journey. His incredible journey received a lot of media attention, and his fundraising for MDA exceeded his expectations: in the end, Ray raised more than $80,000 for MDA.
Nearly a year on, Ray still cycles to his appointments at the MDA clinic at the same hospital where he once worked. He is no longer able to speak, and communicates with Rae via text messages. Yet, despite the challenges of a progressive, fatal disease, the couple still makes it a point to laugh every day. They have also allowed a professional photographer into their homes to document the personal, lived experience of ALS. The photos are raw, emotional and full of love.
Throughout the journey, the Spooners have done things “the Ray and Rae way.” That means some nontraditional approaches to caregiving and adapting to reduced mobility. As Rae told Upworthy, “We [are doing] what works for us. For example, our bathroom is still upstairs and we still live in a split-level home. Or, instead of hauling a wheelchair into a van, pushing Ray around and driving to our doctor’s appointment, this morning Ray got on his tricycle, and I walked beside him the entire way.”
For Ray, living unlimited means making the most of the strength and time he has left with his wife Rae and his children and grandchildren. “Fairly early on I decided not to spend my time chasing more time. I’m spending my time spending my time,” Ray told Upworthy.
It also means helping MDA provide care for those who will follow in his footsteps: “I want to make sure these resources are there for them,” he told People. “Or even maybe a cure some place down the road.”