THE DAILY ORANGE

ALL THESE YEARS

Chris Snow, his ALS diagnosis and the friends who needed one another

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T

he territory was already charted for the Snow family. An aggressive mutation of Lou Gehrig’s disease found itself in Chris’ body the same way it did for Bob Snow, Matt Snow, Brad Snow and David Snow — his dad, his cousin and both of his paternal uncles. Chris, his wife Kelsie, and those closest to them knew the possibility for years. The reality was confirmed two Junes ago.

The conditions of Chris’ relatives who’d been diagnosed declined years before the 39-year-old started struggling with tasks, which included losing strength in his right hand. He kept that hand in his pocket at work. Kelsie sometimes cut his food when he wasn’t looking. “I can relate to anyone that’s trying to hide something in their life,” Chris said. 

The family waited months to go public. A treatment that stabilized Chris’ condition would start working by then. Chris, the Calgary Flames’ assistant general manager, said he wanted the NHL season to end before revealing his condition. It felt impossible to update everyone one by one, and it still does. Not just because of the sheer number of people, but because of how exhausting it became. 

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“When you say those three letters: A-L-S,” Kelsie said, “the way that people look at you, they can’t hear anything after those three letters because nobody has ever associated the disease with hope.”

Kelsie pivoted to email blasts because in-person conversations emotionally drained her. She admits Chris navigates those kinds of talks better — the type where Chris ends the conversation consoling you. But even then, each call is harder. They needed some sort of plan. Something with intention. A way to maximize reach for good, but also to grieve publicly and open up a forum of vulnerability. To have that conversation with everyone who needed to hear it. 

Kelsie wrote on her blog that “we are scared and we are hopeful,” and Chris told his story to the Los Angeles Times and The Boston Globe. They started a viral trick shot campaign that helped raise over $157,000 for ALS research. “We knew that we wanted to be public and use this story for good,” Chris said.

But perhaps an unintended effect has come to those close to them. The ones who might know Chris best at the institution where he first made his name, where he went from a shy Boston kid to a beloved sports reporter at Syracuse University — the type of person you reveal in a wedding video to other friends and family that you aspire to be like. Alongside the bylines and the long road trips at The Daily Orange were the writers and editors who became his lifelong friends. Their entire journey, from prognosis to how Chris told everyone, made them each reevaluate their relationships and how much they prioritized the bonds they’ve forged.

Those stick forever, but college doesn’t. Life happens. A person marries. Families grow. Locations change. You might even move to Canada. Group chats eventually go silent. Phone calls aren’t always returned. Correspondence turns into occasional birthday messages. Then you find out your friend has ALS.

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Dave Levinthal (left), Chris Snow and Dave Curtis pose in Chicago during Chris’ bachelor party in 2007. Courtesy of Dave Levinthal

• • •

D

ave Levinthal first heard when Chris and Kelsie didn’t have many answers. A quick text in late June 2019 turned into a long conservation and questions for Levinthal’s wife, who’s an immunologist. It ended with Chris asking if Levinthal, who’s two years older than him and the godfather to his son, would be able to tell others they knew from college about the diagnosis. Levinthal recalled Chris stressing to “make sure they don’t freak out.”

Levinthal phoned his close friend and former classmate Dave Curtis to watch out for a call from Chris, who’d explain the situation again to him. Curtis’ memory is still blurred, but he remembers the rain hitting his parked car during their 45-minute conversation. “You don’t hear about people coming out the other side of ALS all better,” Curtis thought then.

Levinthal mapped out four hours to just get the conversations over with. Like the Snow family, he would, for a small period of time, have to relive that moment through each message.

His old editor Jeff Passan got the call at the airport. Snow’s college roommate, Dan Bosch, was in France when he got the email. Chris and Kelsie slowly told their two children, Cohen and Willa. They worried what going public would do for their kids. “What if a friend at school says something insensitive?” Chris thought. The conversations between Chris and some of his closest, oldest friends also had to happen in stages. 

“One of the things you realize is you feel really comfortable around certain people you’ve known for a long time,” Chris said. “Because they look at you like you aren’t different, that you’ve changed, that you lost things physically.”

Bosch, who lived near Chris on the ninth floor of Brewster Hall in 1999, recalled how motivated Snow was even before his first class at SU. When Chris first stepped into The D.O., Passan remembers how obvious his talent was. And more than that, how obvious he cared about the work.

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Chris Snow may have created the “snowbeat,” but he also wrote columns under the tagline “Clearly Canadian” his senior year. Emily Steinberger | Photo Editor

Instead of sticking him on a secondary beat that freshmen traditionally receive, the editors at the time tasked Chris with profiling players that weren’t necessarily connected to SU. It shouldn’t have stuck, but Chris had a knack for opening people up, said Michael Rothstein. They don’t remember who chose a name for those types of stories, but eventually it was called “the Snowbeat.” Two decades later, they’re still given biweekly to younger writers at The D.O. (including me a couple years ago). 

“There’s a certain irony,” Levinthal said. “That Chris has become the story right now.”

These days, the group of 40-year-olds rarely talk about their work. They look back on the nights leaving production at The D.O. to go kick field goals at Hookway. The weekends spent in the Flanagan Gymnasium playing pickup basketball, sometimes racquetball. Talking trash while playing golf at Drumlins Country Club, and one time rolling down the hill of the final hole of the course. 
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He’s still the kid who showed up to every party in the same white polo with one gray and black stripe, Passan said. The one who was known in the sports office for long tangents. Many say Chris has a certain way of bringing people together. And in May 2020, the hope was that a dozen of them would go up to see him and the family in Calgary, Alberta. Greg Bishop, a former D.O. sports editor, texted Kelsie at some point, “Would this be something Chris would be up for?” The answer was yes. Some friends couldn’t remember how many years it’d been since a couple of them reunited.

The last time a couple of them were together was in Boston for a Flames-Bruins game a few weeks before COVID-19 shut down the season. Chris walked through the press level as some stopped him to say hello. He’d text people, then do an interview. Curtis and another SU alumnus, Chris Wojcik, were at the game. 

“He was making the rounds around TD Garden,” Wojcik recalled. “He may as well have been the mayor of Boston.” 

After a 5-2 Flames victory, they’d go to a nearby sports bar. Chris told stories of his kids getting bigger, the support he felt from the franchise and from the city of Calgary. Writers often came up to talk to the infamous Red Sox writer turned NHL executive, a path so wild it landed him a 2007 profile in Esquire magazine

There's a certain irony that Chris has become the story right now
Dave Levinthal

Chris didn’t seem overwhelmed by the attention, Curtis recalled. Still, he was moving slower since the last time they had seen him. It was hard for him to take off his jacket or hold a drink and reach for food at the same time. Chris has often said to his closest friends since the diagnosis, “I don’t want to be treated like we are afraid to act like we did.” 

Earlier, fans on the concourse held up “Get well” signs at TD Garden. Chris took a picture with a #SnowyStrong banner. He and Kelsie appeared on SportsCenter a month before that game. Many follow his journey on Twitter, and thousands read Kelsie’s blog and listen to her podcast

“This is not the typical story that most people with ALS have,” Chris said. “The path I took is the one I did because I have a platform that (my relatives) didn’t have.”

The pandemic foiled the group’s trip to Calgary. A gathering, a reunion of sorts, became more of a hope than a plan. Still, Rothstein checks border restrictions every month waiting for entry into Canada to open and quarantine mandates to end. He’s told bosses that when that happens, he’ll drop everything. Like the others, Rothstein just wants to see Chris, his friend, after what the Snow family has endured the last two years.

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College friends Michael Rothstein, Chris Snow, Greg Bishop and Jeff Passan said they’ve talked more often in their group chat since Chris’ diagnosis. Courtesy of Greg Bishop

• • •

K

elsie first prepared a letter about what the family would soon go through when she and Chris were in Miami. The two of them flew down after Chris went to half a dozen doctors, mostly nerve and muscle specialists, in Calgary that June two years ago. He knew what may be happening to him.

Chris was about to finish college when his uncle was diagnosed with ALS. It seemed like an “anomaly” then, Bosch remembers Chris telling him. After his death, Chris’ dad, Bob, learned he’d have a good chance of developing the terminal disease through a test he would later regret taking. Years later, his cousin found out before 30, the third in the family to be diagnosed. His condition deteriorated “unbelievably fast,” Chris said.

“The idea became agreed on that this could show up any day,” Chris said. “Not in 10 years or 20 years. Now.”

Right before going to Miami, Chris took his kids to school each day, rode his bike and called a lawyer to work out his will. They still had a smidge of hope it would be something else. It was three, maybe four hours of tests, lunch, then the diagnosis. Amid the rain and the tears, Chris and Kelsie kept telling each other they needed a miracle.

When you say those three letters: A-L-S, the way that people look at you, they can't hear anything after those three letters because nobody has ever associated the disease with hope
Kelsie Snow

In the same breath after hearing the worst words he’s ever heard, Chris’ doctor pulled out his phone. There was a clinical gene therapy trial that seemed promising, and a little over a week later, Chris donned a hospital gown for the study that only 1% to 2% of patients qualify for based on genetic mutations, Kelsie said. Before, he had been told he had six to 18 months to live. And that prediction, along with the 33% chance that Chris was given a placebo, kept him up at night for months. 

When Bob became the fourth Snow to get diagnosed, it was his nature to not burden his kids. He told them two months before he passed. Living far away, there was no way to observe those changes, but Chris was there for the end, letting his father drive to Walmart right before he died. 

When it came to journalism endeavors, Chris’ first companion was his father. The first money Chris thought he earned as a reporter was actually Bob sneaking $80 a month in their mailbox. Chris wishes his dad told him about the diagnosis earlier, but Bob was always private about stuff like that. He told his son, “I’m good with this story I’ve written.” And, “If this ever happens to you, you’ll know what to do.”

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Chris, Kelsie and Cohen pose in Banff, Alberta in 2012. Courtesy of Dave Levinthal

Chris believes he was part of that 66% in that first trial — the ones who got the treatment to limit their limitations. But ALS isn’t always predictable, and new struggles pop up. Near the end of last year, a feeding tube was inserted in Chris’ stomach. The days leading up to the surgery were some of the last times Chris could eat certain foods.

“I’m always trying to make people aware, like, ‘No, this hasn’t been perfect for us,’” Kelsie said. “It’s been good, but it’s not been perfect.”

Bishop, Passan and Rothstein recalled that Chris had a particularly tough Thanksgiving when it came to meals. The four former D.O. editors rejuvenated a group chat in late 2019 after Chris’ condition went public. It became a hotbed of running jokes and screenshots of old emails. On one particular November day, they called up Bow Valley Ranche Restaurant in Calgary and ordered Snow one of everything on the menu. When the food arrived, Chris recalled how excited his kids were. There’s been deliveries of pizza, Italian food and $100 of pastries from the three since.

Like most, the three of them haven’t been able to see the Snows. Some summers, Levinthal and Curtis met at Chris’ family lake house in New Hampshire. Visits like that reminded Wojcik, who made the trip for one day, how good of a father and husband Chris was. 

Levinthal got to spend quality time with his godson. It was just six weeks before when the thought crossed Levinthal’s mind that his best friend might have six months to live. But at some point — maybe when Chris drove the boat, or maybe when he tossed around the football — Levinthal realized Snow’s battle could have a stopping point.

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or Chris, the best days are now when he’s on the ice, skating past five opposing players and shooting left-handed. They’re the Sunday mornings where he takes Cohen to baseball and the two lefties play catch. “My good days are when no one else can tell I have ALS,” he concludes.

Then, there are the challenging days. Chris says there are two types. One is where he’s going through some sort of physical loss, but “nothing excruciating.” The medication isn’t fully working, he’ll think on those days. The other type is when the changes to his face become apparent. “The way my face and mouth are right now, I can’t articulate nearly as well,” he said. When Chris is talking and wants to interject with a quick joke, he doesn’t know if he can pull it off because he has to think of the word ahead of time.

One of the things you realize is you feel really comfortable around certain people you’ve known for a long time because they look at you like you aren’t different, that you’ve changed, that you lost things physically
Chris Snow

Those days, some might even call the worst moments, aren’t even that bad in Chris’ eyes. When his body isn’t functioning like it was, Chris reminds himself he’s still alive almost two years after his initial diagnosis. When he needs to lie down more than he wants or notices more changes to himself, Chris thinks of his family history, his treatment, his wife and kids.

“If I had to choose what things to lose before and I got a whole menu, I would choose all the things I’ve lost and all the things I haven’t because I can still do basically everything I want to do,” Chris said.

There are a lot more good days ahead. That didn’t always feel possible. Not just to Chris, but to those closest to him.

To his friends who haven’t seen him since COVID-19 or even years before that, their next great days align with Chris’. Where conversations aren’t limited to cell towers and group chats. Where a group of guys tell the same inside jokes that cracked them up when they were 20-something. It’s the talks of marriage, and losing hair, and not being able to drink as much as they used to.

“We weren’t super nostalgic for a long time,” Bishop said. “We are now.”

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Banner illustration by Talia Trackim | Senior Staff Designer