A west-side advocate, diagnosed with ALS, gets some help from his friends

Nate Manuel is within earshot of the children playing at Neighborhood House, the nonprofit child care center where he works as an after-school youth leader — but he’s not keeping up with the kids the way he used to.

“Everywhere [I’ve worked] besides the Neighborhood House, I was running, I was engaging with the kids. I was playing sports and games with them,” Manuel said.

That was before March 2020, when he started noticing problems with his knee. He eventually was diagnosed with amyotrophic lateral sclerosis, or ALS — an incurable degenerative disease in which muscles slowly begin to waste away, according to the Johns Hopkins School of Medicine. It’s commonly known as Lou Gehrig’s Disease, after the baseball legend was diagnosed with it.

For Manuel, the diagnosis was life-changing. Manuel had worked as a basketball coach at East and West high schools, as well as University of Utah summer camps. He has also worked at the Boys and Girls Clubs in Rose Park and Glendale, and as a youth coordinator at the Urban Indian Center.

When he started at Neighborhood House, he said, he could make the 15-minute walk to work with ease. Over time, he had to take breaks more and more often.

He remarked that his boss said the kids at Neighborhood House have never seen “the real Nate.”

“I mean, this is the real me,” Manuel said. His mobility is limited, and he often uses a wheelchair and a cane to move around — so the kids have never seen “the abled me.”

Champion of the west side

Neighborhood House — founded in 1894, before Utah became a state — sits in Poplar Grove neighborhood, on Salt Lake City’s west side.

According to Megan Shaw, the facility’s school-age manager and Manuel’s boss, most of the clients it serves are Latino or single parents “on the lower end of the demographic scale.”

Manuel is a champion of the west side. He lives in Poplar Grove, and used to live in Rose Park. The west side, he said, is burdened with other people’s misconceptions.

“Part of the misconception is that people label it ‘the ghetto,’” Manuel said. “The way gentrification and city planning get handled by the state, they kind of get treated like the forgotten people — ignored, silenced, suppressed.”

Manuel grew up on Tohono O’odham Nation Indian Reservation in southern Arizona and is from the Diné Nation, but moved to Salt Lake City when he was five. He stood with tribal nations in Standing Rock to protect water rights, and works at home with Indigenous communities.

He grew up with two prominent images of Indigenous people in Salt Lake City: The drum and feather logo of the University of Utah’s sports teams (“with that imagery, we’re mascots, not people,” he said), and the term “Lamanite,” the name for ancient people described in the Book of Mormon, the scripture of The Church of Jesus Christ of Latter-day Saints.

“For me to be around youth and have an influence and have a place to educate, I definitely want to change those images,” Manuel said. That’s why he does this work.

“There’s going to come a point where I’m not going to be able to do this work, and it’s going to be in the hands of these youngsters,” he said. “We have to do right by them, because there’s a lot of serious things going on.”

On the other hand, Manuel said, the beautiful thing is that everyone loves the community and takes pride in the roles they serve. With his students, Manuel said his goal is to get them to look beyond those misconceptions of the west side.

“A lot of the time, especially in this neighborhood, it’s just about survival,” he said. “I know that we have to survive when we have to pay our bills and stuff, but that’s not the reason why we’re here now.”

The programs at Neighborhood House use fun and creative tasks that will help kids gain life skills that will help them and their families. Shaw said Manuel is kindhearted, humble and patient with the kids. She’s even had parents request to make sure their kids work with him.

“The kids absolutely love him, they’re helping push his wheelchair,” Shaw said. “[They’ll ask] ‘’Nate, are we doing the elevator today? Can we help you down the stairs?’ They show just as much care for Nate as he’s showing for them.”

Though the progression of ALS has slowed Manuel down, it hasn’t stopped him entirely. He has recently started a new career as a filmmaker, creating the short-film series “This Was The Place” on YouTube.

Manuel said he was approached by the Salt Lake City Public Library to create “a land acknowledgement” — a statement that spotlights the Indigenous people on whose land the library now sits. Manuel said he challenged the request, by asking the library in return, “What are you really doing for our communities for being on our stolen land? A beautiful piece of paper is cool and all, but it doesn’t really do anything or hold people accountable.”

The short-film series highlights residents from the west side and in various Indigenous communities, and explores different parts of their lives — such as what it means to be Indigenous, food security and sovereignty and Indigenous military veterans. Those questions of accountability are posed to each of his subjects.

The ‘bankruptcy disease’

It took going to two different hospitals before Manuel received his ALS diagnosis. He said he remembers sitting there, asking questions about how he would be able to go out. He tried to be strong, he said, and not cry.

“They just told me, ‘One day, your lungs won’t be able to work anymore. It’ll attack your lungs and you won’t be able to swallow,’” Manuel said. There was no hope of a cure, he was told, and that the doctors wanted to study him.

His takeaway from those initial diagnosis meetings was succinct, he said, and shocking: “Compared to everything else, ALS shortens your life dramatically.”

It also drains a patient’s bank account. The ALS advocacy group Every90Minutes has called it “the bankruptcy disease” because of the expenses that pile up for someone diagnosed with it.

A lot of the medications given to ALS patients to cope with the disease also affect the kidneys, Manuel said, and those medications can be pricey. He has looked into places in California, Texas and Florida that might be able to help slow the disease’s progression, but those, too, are expensive.

His biggest hope, he said, is to reverse the degeneration.

Seven of his friends have banded together to start a GoFundMe campaign, to support his costs at one of these places. One friend, Natascha Deininger, said that Manuel initially didn’t want them to create the campaign — which, as of Thursday morning, had raised just over $16,000 in pledges, toward a $75,000 goal.

Deininger said Manuel helps ground his friends, by reminding them what is important in life. People, she said, can sense his ability to connect with others. “Nate has an amazingly generous energy about him,” she said. “He’s just a joy to be around.”

Manuel said he remains hopeful, but he admits that he’s exhausted.

In the portion of the GoFundMe where he wrote about himself, Manuel said that his diagnosis “has been a nightmare come true, but I remain prayerful and positive that I will bounce back from this.”

Manuel talked about the people he wanted to interview for his short-film series — people who aren’t usually captured in documentaries. Though he probably wouldn’t admit it, his description could also apply to himself.

“I was thinking of people that are doing work in the trenches, real work in their communities that do not care to get fame, attention or get recognition,” he said. “They’re just doing the work because they know how hard it is, [and] for a bigger vision for all of us.”