Off on the ride of his life

Off on the ride of his life

URBANA — After delivering 2,095 babies, being a world traveler and spending more than three decades with the woman he married in his 20s, there were just a few more important things Ray Spooner wanted to do with his life.

An adult convert to the Jewish faith, he checked off one of them, his Bar Mitzvah celebration, this past July.

The other two: Spending time with his family and embarking on a 3,000-plus-mile bike ride from one coast of America to the other. He'd hoped to delay the bike ride to next year, Spooner said, but his doctor told him he'd better not wait. He leaves this weekend.

One of the rare men to make his career as a nurse midwife, the London-born, 56-year-old Spooner retired from the Carle health system at the end of August because he has amyotrophic lateral sclerosis, or ALS, a progressive and fatal motor neuron disease.

After his diagnosis this past December, he continued working as a clinic nurse midwife for a time, he said, but he stopped delivering babies this past January because the disease was already draining his strength and dexterity.

How Spooner came by ALS, also called Lou Gehrig's disease, he and his wife, Rae, said they don't have a clue.

Heredity is a risk factor, but there's no history of this disease in his family, Spooner said. And while his general health condition wouldn't have contributed, he's been in good health throughout his adult life. He gets plenty of exercise as a local and distance cyclist, he's a longtime vegetarian and he hasn't taken a sick day since 1984.

"For everything we know about the human body," Spooner said, "we know so little about this one thing."

'It's gone so fast'

Spooner noticed the first sign that led to his ALS diagnosis in the summer of 2014, when he was having trouble with one hand forming chords playing the guitar.

Since being diagnosed, he has already become limited in how far he can lift one arm, and the other one is growing weaker, he said. He is experiencing fasciculations, which are small, involuntary muscle contractions, and the fasciculations in his tongue have affected his speech.

His neck has grown weaker, and drinking beverages has become more of a challenge.

As for eating, "certain things I'll eat in company and certain things I won't," he said. Some foods are easier for him to manage than others, he and his wife said. Toast, for example, is still OK. A hotdog bun isn't.

"Rae makes me cranberry scones, and I have to take a small bite at a time. But as long as I have a cup of tea and as long as I can poke it around my mouth, it's OK," he said.

How quickly ALS progresses varies from person to person. The mean survival time is three to five years, and some people live longer. But Rae Spooner wonders how long her husband may have had the disease before he was diagnosed.

"It's gone so fast," she said.

Her husband long believed he'd die in a bike accident one day, Rae Spooner said. Now, rather than a sudden death, they're getting some time to wrap things up, she said — but it's hard knowing their kids won't have their dad in the future.

She also counts it a blessing that she has retired from her teaching job, and has this time to spend with her husband.

'He's always full board'

Spooner said having ALS isn't something he can control, but how he deals with it is.

He acknowledged it's hard, but he copes partly by writing about it in his blog, which can be accessed at rayslittleride.com. He has also drawn support from reading the writing of another ALS patient blogger.

He's also lived a pretty full life, he said, and had he not done so much, facing a terminal illness would be harder.

"Our lives together have been pretty fulfilling," he said of his 33 years with Rae, 32 of them married.

Spooner didn't start out his career as a nurse. He was once apprenticed as a jeweler, and was trying to earn a living as a batik artist when he decided to apply to nursing school at Parkland College.

He got a job as a labor and delivery nurse, got his bachelor's degree at the University of Illinois, then got his master's degree in nurse midwifery at the UI Chicago. He worked for Carle for 23 years.

What attracted him to delivering babies?

"It's such a magical time in peoples' lives," he said.

Spooner first met his wife while volunteering on a kibbutz in Israel. They first moved to Rae's hometown of Urbana, then traveled for a few years, looking for a perfect place to live. They went to New Zealand, Australia, Indonesia, Malaysia, Thailand, Nepal, India, Greece, Israel and England and landed back in Urbana after the birth of their first daughter.

They now have three grown children, two daughters and one son, and one grandson who was Spooner's 2,050th delivery.

Spooner started bicycling for transportation as a student, and then doing distance bike rides for charity. He's done 100-mile rides regularly and taken part in several 24-hour ride competitions. Even now, he's confident about being able to log 100 miles a day on his ride across the country.

Dr. Jon Weisbaum, an obstetrician/gynecologist at Carle, said the bike ride Spooner will undertake beginning Sunday from San Diego to St. Augustine, Fla., is characteristic of what makes the man unique.

"Ray never does things half-baked. He's always full board. He's always doing something for somebody," Weisbaum said. "He's the most unique individual."

'This is their ride too'

Weisbaum called Spooner a "fabric maker" in how he relates to people, not only at Carle but in the Jewish community. Spooner converted to the Jewish faith after his second daughter was born.

"Ray is a fabric maker. He builds things through all the people he interacts with. He always tries to make connections between people and himself," Weisbaum said. "It's most noticeable with his family and his friends in the community. He's always trying to think of a creative way to acknowledge and give."

Even his bike ride, which has so far raised nearly $30,000 for the Muscular Dystrophy Association, "isn't about him," Weisbaum said.

"There he is, sharing again," he said.

Carle has posted a video about Spooner and his upcoming, last journey (vimeo.com/137647306) and Weisbaum said Spooner is already sorely missed there.

"We won't find another one like him," he said.

Spooner launched plans for the bike ride with a goal of raising $25,000 for the MDA and motor neuron diseases such as ALS, but once he reached that goal on Sept. 14 with a month to go before the ride, he upped the goal to $50,000. All donations are going directly to the charity, and their own costs associated with the bike ride are self-supported, he and his wife said. Some friends personally donated some money to them separately, to cover some of their extra costs, such as some nights in a motel, Rae said.

Several neighbors and friends will be accompanying Spooner on the bike ride, and Rae will be driving the support car. They'll be home in time for Thanksgiving, she said.

What this ride means to the Spooners may be best summed up in one of Ray Spooner's blog entries, entitled "100% Fatal."

He wrote: "We see the ride as an opportunity to give back to those who have helped us. To give back while we can and hopefully to raise a little awareness about ALS along the way. People say they admire how we're facing this. But none of us really know how we'll face a situation until actually confronted with it.

"It's easy to face a challenge head on when you have an incredibly supportive group of friends and family standing beside you. ... For everyone who has gone through this or will go through this. For everyone who has watched or cared for a loved one as they have gone through this. This is their ride too."

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mgd wrote on October 15, 2015 at 4:10 pm

 

ray and rae. is that the rae whose family lived across from leal?

Mary Gates DeRosier

 

khatlestad wrote on October 15, 2015 at 7:10 pm

Yes - her brother Jeremy was in my class at UHS.

amf wrote on October 15, 2015 at 6:10 pm

Ray is an inspiration.  The truth is, he always has been.  Best of luck to them in this next chapter.

akriska wrote on October 15, 2015 at 9:10 pm

Very sad to hear this, we are sending our love and prayers. Hope you guys see this!

 

love,

 

Aria, Adam, and Alexis 

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