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Need COVID-coping tips? Ask a kid with cystic fibrosis

Neal Rubin
The Detroit News

Elizabeth Warner has been social-distancing since before all the kids were doing it. Sheltering in place, too.

Hey, it beats coughing up blood.

Warner, 18, and her twin Catherine have cystic fibrosis, with its raft of hazards: lung infections, inflammation, respiratory failure, attacks on other organs. Among other things, they need to avoid flu and colds like the plague.

Catherine Warner, left, and her twin sister Elizabeth know all about social-distancing because they have cystic fibrosis. They're part of a group of young people known as the Social Distance Squad who are spreading the word.

They were home-schooled in Royal Oak, first out of caution and then by preference. "We definitely have more experience with very little structure," she says — which makes them ideal members of a helpful new band of young CF patients called the Social Distance Squad.

The concept behind the nationwide Social Distance Squad is simple: peers who've been dealing with relative isolation forever are a good source of advice for people getting twitchy after a few months of it. Through videos, Zoom-based classroom visits and ultimately one-on-one online counseling, they're offering tips on everything from distancing to dating.

Warner, for instance, says there's nothing wrong with binge-watching a TV series, but time zips past more quickly "if you do something productive with it. I would knit that sweater you've always wanted to knit. Start writing a novel. Find stuff to do."

In a preferred version of our peculiar world, mid-July would feel like a late start for the the squad's heavy promotional push. In the the world of COVID-19, case numbers are trending in the wrong direction and shopping for back-to-school might be a fool's errand.

Parents and districts are still sorting out options. In Detroit, public school students are scheduled to hit classrooms come fall, but the teachers' union is less than enthused. Schools in Ann Arbor, Grand Rapids and Lansing plan to start the year online.

"There really isn't anyone better to talk about dealing with this than the CF community," says former Detroit radio reporter Laura Bonnell. Masks, disinfectant wipes, six-foot spacing: "This is exactly our lives."

Laura Bonnell started the Bonnell Foundation in 2011 to help families navigate life with cystic fibrosis. Her daughters Molly, 25, and Emily, 23, were diagnosed in infancy.

Bonnell launched the Bonnell Foundation in 2011 to help families navigate life with cystic fibrosis. Her daughters Molly, 25, and Emily, 23, were diagnosed in infancy.

Molly is working on a master's degree in London and Emily, who holds a degree in advertising, is looking to replace the job she lost early in the pandemic because her company wouldn't let her work from home. Their successes are lessons in themselves — restrictions aren't forever, and adventures await.

Another lesson: someone else's shackles are probably tighter than yours. Emily, who's featured in the squad video about relationships, lives in Oak Park with her beau. But she's been staying with her parents in Royal Oak because he visited his family and she can't see him until his precautionary COVID-19 test comes back.

"I've only hugged her twice since the pandemic hit in March," says Laura, who was laid off from WWJ-AM (950) last summer. "I've begged her."

The Bonnell Foundation is one of five geographically scattered CF nonprofits behind the Social Distance Squad. It was brought in by the Claire's Place Foundation of Los Angeles, which had previously worked with a New York health-care ad agency called Area 23, which does a lot of pro bono projects and "likes to take on interesting health challenges," says chief creative officer Tim Hawkey.

It struck his staff that "teens have been hit hard here," Hawkey says. "At the same time, they're sort of an unappreciated segment."

The CF realm was an obvious place to look for help, because at least at some point, "each of these kids has had to live a life of isolation," he says. "They've invented their own ways to stay positive and keep their minds occupied."

The Social Distance Squad's clubhouse door is open to any CF kid who wants to join, Hawkey says, and "kid" is a flexible term. Area 23 offers remote advice on setting and shooting videos, then contributes editing and animation. 

The finished products are short, punchy and optimistic. Some are posted on YouTube or at socialdistancesquad.com, where grandparents can find them. But the goal is to hit target audiences where they live — topics include creativity, finding adventure, and staying connected to a team — and where they go, starting with TikTok and Instagram.

"One young lady said that when she goes out, she has a social-distancing spotter to make sure she is in fact six feet away from other people," Hawkey says. "Now I've asked my wife to be my spotter."

Laura Bonnell counts that as a victory.

Her daughters each had to skip the seventh-grade trip to Washington, D.C. One year, Emily missed 45 days of school. They had to wear masks to medical appointments, and hated it because it felt like everyone was gawking at them.

"Now all the CF people fit in," Laura says.

Amen, says Catherine Warner.

She and her sister Elizabeth are bound for Ave Maria University in Florida, where Gov. Ron DeSantis has declined to make masks mandatory but a coalition of 135 CEOs just signed an editorial asking people to wear them.

"I tell people the nicest thing about quarantine is that I don't get stares and looks anymore," she says.

Something else she tells them: listen to the experts and be careful, "but don't worry obsessively to the point where it's just damaging you."

That comes from a voice of experience, available soon on video.

nrubin@detroitnews.com

Twitter: @nealrubin_dn