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Vahe Gregorian

Vahe Gregorian: Fighting ALS, awe-inspiring Sarah Nauser is beacon with help of friends like KC Royals

Even as a child, Sarah Nauser seldom could be slowed by the concept of “no.” To the contrary, said her mother, Jamie Sanders: “It was almost like if you said ‘no’ she’d try harder.”

“I always found a way,” said Sarah, beaming, as ever, befitting her “Smiley” nickname.

So the girl who was as radiant as adamant played baseball with the boys from about the time she could run, leading to a softball career at Blue Springs High. When she became consumed with another uniform, she began volunteering for the Blue Springs Police Department by the time she was 15 or 16; she started at the Kansas City Police Academy the first date possible: the day after her 21st birthday.

She was eager to protect and to serve since nothing makes her feel better than to help people. But there was something else that she also calls a “driving force” toward that work: One day, she hoped she could guard the home dugout of the Royals teams she adored even through some woeful years.

Heck, maybe she loved them more not despite the hard times but because of them. They needed her support even more, she figured, and Kauffman Stadium became what she still calls her “happy place” some 40 times a year or more.

That allegiance even was displayed in a photo on Page A1 of The Star from Opening Day 2005: She was wearing the “G” in a “GOROYALS” lineup of T-shirts she had made for softball teammates. Never mind that it had been a weekday game and the picture attracted some attention in school. If she hadn’t been sick, exactly, her mom says with a laugh now, certainly you could say she had “Royals Fever.”

All those times figuratively standing watch over the Royals led to her vision of guarding the dugout becoming a reality four years ago … but in a most poignant of ways: It was her last day in full police uniform after a diagnosis of amyotrophic lateral sclerosis (ALS), the sinister neurogenerative disease that is fatal and has no cure.

Even as the 33-year-old sits in a recliner in her living room tethered to a breathing machine and virtually unable to move, though, the infinitely effervescent woman still doesn’t know or take “no.”

In her ‘spell’

In fact, she will persuade you that this cruel turn has been not just about what she’s lost but also what she’s found: a profound purpose.

Her tender heart and irrepressible spirit help explain why George Brett brought up “my friend” on Monday at the Joe McGuff Golf Classic. The event on behalf of the ALS Association Mid-America Chapter is part of ALS Awareness Month leading up to Lou Gehrig Day on June 3.

Since the day they met when she was on dugout duty, Brett, a longtime champion for the ALS community along with Tom Watson, has stood by his promise to help her in any way he can. He arranged for her to throw out the first pitch a few weeks later and for her to meet with politicians about ALS and stays in touch.

Her dauntless demeanor speaks to why the Royals will wear her T-shirts adorned with “#FIGHTLIKEAGIRL” and “#SARAHSSOLDIERS” on June 3, and why she plans to be at Kauffman Stadium to present Sal Perez with the Lou Gehrig Memorial Award.

(Displayed in the front hall of her home, incidentally, are framed and signed jerseys from Whit Merrifield, Nicky Lopez and a perfumed one of Perez, which wafted about the house before being sealed under glass).

Her way tells you why many Royals and former Royals have befriended her. That includes Mike Sweeney visiting her at home and holding her hand as he prayed with her in centerfield at spring training in what she called “one of the most wholesome, good moments I’ve ever experienced.”

And it’s why Royals TV announcer Joel Goldberg thinks anyone who spends time with her comes away better for the experience.

“You can’t not love her … just the way she radiates positivity,” said Goldberg, who officiated her wedding to Lonnie Price last year and has seen many drawn to what he playfully calls her “spell.”

“I think it would be easy to feel sorry for someone who is going through something so unthinkable,” he added. “But she just doesn’t have the time to let anyone feel sorry for her.”

By phone from Georgia, former Royals manager Ned Yost said that he thinks about her often and that “on a scale of one to 10” his admiration of her is “eleven and a half.”

‘What I can do and not what I can’t do’

There are a lot of reasons for such sentiments but one thing that connects it all: Her sense of purpose conjures hope for the otherwise hopeless and offers meaningful perspective for anyone.

Inside a home marked by a Royals logo and as she wore a Royals shirt and sat beneath a Royals blanket with the Royals game in the background adjacent to a Royals jersey signed by the entire team, she pointed to an example of why she believes her mindset is so crucial now.

“The breathing machine: Does it stink to have to wear this thing all the time? Yeah,” she said Wednesday. “But it keeps me alive, and I can still talk. The majority of people (with ALS this long) can’t talk.

“So it’s focusing on what I can do and not what I can’t do.”

As a resource and an advocate. And as what she calls a “test dummy,” determined to extend her own life for reasons well beyond herself.

That’s why she speaks at fundraisers and to legislators and spends so many hours on Zoom calls trying to provide refuge for those who don’t know where to turn.

It’s why she seeks to promote new approaches to cures and why she’s gone literally to the other side of the world, China, for treatment.

“If there’s something out there that somebody wants to try when they have a terminal diagnosis, what do we have to lose? We should not be told no,” she said, later adding, “I might not see the cure. But if (experimental treatments) help the future of ending this disease, that’s what I want to do.”

She’s a realist about the disease (“I’ll tell you what’s to come”) but also compels you with her conviction about the power of attitude.

ALS just makes me want to weep, especially if you’ve ever seen its ravages up close with family or friends.

But in this case, and in a number of others, it’s also because of such sheer courage and her remarkable belief that she still should be helping and consoling others.

“It just makes you feel good,” she said.

Noting that her breathing had been so bad upon initial diagnosis that she seemed to only have months left at the time, she added: “It’s turned into a pretty miraculous story, I guess you could say.”

‘Sainthood would be about right for him’

Those words seem to echo those famous ones of Gehrig, the baseball immortal whose name became synonymous with the disease: “Today, I consider myself the luckiest man on the face of the earth,” he said at his retirement in 1939 at Yankee Stadium.

Maybe it’s no coincidence that her words reflect that. She summoned the “luckiest man” quote for the back of that T-shirt she designed via her TD Pilot, an eye-controlled communication device through which she controls everything from lights and heat in the home and can text and tweet and play music and much more.

“I can do more stuff with this computer than most people can do with their fingers,” she said, smiling and noting she has better design skills now than ever. “Sometimes I surprise myself.”

Having that technology is just one of the ways that she knows she’s fortunate despite what she is facing.

Few have the support and resources she enjoys, including so many around her who are true to the nature of first responders: hurrying to her when others might turn away.

From a husband serving as her primary caregiver (“Sainthood would be about right for him,” Yost said) to a number of friends and family (police and otherwise) who spend the night when Price works his overnight shifts as captain of the Shoal Creek Patrol Division …

To other charities such as Answering The Call, Guns ‘N Hoses and the Veterans United Foundation, which provided the TD Pilot Ipad because, she said, it was “inspired by my fight.”

Between the generosity of those organizations and other fundraising efforts such as golf tournaments, she has a home and van contoured to her needs and was able to travel to China for stem-cell treatments.

Those are advantages few others with ALS might enjoy but that also enable her to do what she loves most: to help their cause as her cause.

‘Don’t wait for your own diagnosis; let mine help define you’

Just like when she wore the police badge: Her most fulfilling episode in eight years with the KCPD was calming a desperate veteran and managing him through crazy hospital red tape and having him find her weeks later to say, “If it weren’t for you, I wouldn’t be here today.”

And it’s a calling she soon learned to do in a different way when her life took a radical turn in 2018.

After about a year of feeling frequent muscle twitches in both legs, one night on duty she was in a ground fight. While she stands only 5-foot-4, her weight and bodybuilding work had earned her another nickname in metro: “Mighty Mouse.”

But suddenly, she said, “the bad guy’s on top of me” and she couldn’t feel her legs. After other officers got him in handcuffs, she had to be helped up. Her legs still were numb back in the car doing paperwork.

A few weeks later, she got a preliminary diagnosis of ALS. She didn’t know anything about it and thinks now how she wishes she had somebody like her today to turn to.

Even after she read up and felt lost, she kept it to herself for a few weeks: How could she tell her parents?

“I wanted to be strong for them,” she said.

When the time came for the confirmation appointment, her mother naturally “lost it,” as Sarah put it. But by then, Sarah had a plan.

“I said, ‘Mom, you’ve got five more minutes to be upset, and then we’re going to figure this out,’ ” she recalled. “ ‘We’re going to push forward, and I’m going to be OK.’ ”

Her mother still has her anguished times, of course. But, as ever, her daughter’s insistent nature is prevailing.

“I try not to think too far into the future,” said Jamie, who relishes her overnight stays with Sarah every Wednesday, “and savor the moments that we have.”

As naturally as this attitude seems to emanate from Sarah, it’s hard to comprehend how she remains such a beacon.

Sometimes, it’s hard not to play mind games, especially as friends with ALS die. Sometimes, she needs a little break from it all.

But just to reset.

Because there are too many people who need her for her to quit, and she’s going to get the most out of her voice while she still has one. Plus, she’s still intent on making good on what she said in 2019 when she received the Tom Watson Award for Courage from the ALS Association:

“Don’t wait for your own diagnosis; let mine help define you. Live your life to the fullest. Love your friends, love your family and love yourself. Be gracious, be patient, be present. Love the life you live, live the life you love and enjoy every second along the way.”

Who’s to tell her no?

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