Man with ALS longs to see new 'Star Wars'
NASHVILLE — Just about everything in Nathan Ashley's body has stopped working, but it's not stopping him.
Ashley was diagnosed with amyotrophic lateral sclerosis — known as ALS or Lou Gehrig's disease — in May 2013.
His wife of five years, Kathleen Ashley, must use a lift to get him in and out of bed, like removing an engine block from a car. She gives him his medication — some every four hours, others every eight, others once a day — and suctions the tubes Nathan Ashley uses to breathe. If he wants to move his arms or legs, she does it for him.
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The couple has tickets to see Star Wars: The Force Awakens, the newest installment of the movie franchise set to debut Dec. 18. Nathan Ashley's love of Star Wars started when he was young: His mother bought him an R2-D2 action figure when he was about 5. Soon the family rented the original movie, and his eyes stuck on the domed droid. It grew from there.
"When the tickets came on sale, I bought some, and I said, 'Honey, I got our tickets, we're going to see Star Wars,'" Kathleen Ashley said. "He just started crying. He said, 'I’m not going to be able to go.'"
Nathan Ashley's health has gotten worse: Even sitting in his wheelchair has become too painful, and so he stays in bed. A recent doctor's visit resulted in orders for more frequent suctioning. Going to a movie theater is nearly impossible.
Kathleen Ashley and a friend decided to create a video, hoping it would go viral, asking Hollywood to let Nathan Ashley, 34, watch the movie at home.
The idea had worked before: The movie makers allowed a Texas man with terminal cancer to see a version of the movie earlier this month after a social media campaign spread around the world. That man, Daniel Fleetwood, died days later.
The Ashleys' video has nearly 7,000 views since it was posted Nov. 22. There's a Facebook group and people are posting so much on Twitter using #TFAforNathan, some have been put in timeout for overtweeting to celebrities.
Nathan and Kathleen Ashley married in May 2010, on the day torrential rain brought catastrophic flooding to Nashville. They now share a renovated bedroom at Kathleen Ashley's parents' house in La Vergne. Their wedding pictures are on the walls: He's standing beside her, with his arms wrapped around here; in another, they're walking down a Nashville street.
He can't do those things anymore.
On her bedside table is a Yoda doll wearing a Santa hat. On his bedside table are machines that keep him alive. There's a Star Wars blanket on the bed and a Death Star made of Legos on a shelf.
And though they to want to see the seventh film in a way that does not hurt Nathan Ashley, the Ashleys' social media campaign has another benefit.
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"When he got diagnosed, he said he wants to be able to help other people through this journey," Kathleen Ashley said.
Nathan Ashley can move his lips and eyes. He smiles when the couple's 1-year-old dog prances around on the bed. He cannot talk, but Kathleen Ashley can read his lips. He uses a computer that tracks his eye movement to type out words, which the computer then verbalizes.
"At first, being told you’re dying and there is nothing that can be done, it’s a huge shock," Nathan Ashley said through the computer. "And with each change it’s like being told all over again. So now that just about everything has stopped working, my faith is being tested but not shaken. Like I’ve said, I will beat this or hold on until the cure is found. This is not how I am supposed to live and I will walk again."
Nathan Ashley moved his lips.
"What?" Kathleen Ashley asked. She read his lips:
"ALS sucks."
Follow Stacey Barchenger on Twitter: @sbarchenger
How to help
Want to help support Nathan Ashley’s request to see Star Wars: The Force Awakens in his home? Tweet using #TFAforNathan, or find their page on Facebook: Walking by Faith for Nathan Ashley.