This Is How I Carry on After My Husband’s Terminal ALS Diagnosis

Kelsie Snow on clinical trials, terminal diagnoses, holding onto hope and going public with her husband’s devastating ALS diagnosis at age 37.

In the summer of 2004, I was an intern at the Los Angeles Times. I kept hearing about Chris Snow, one of the star interns from years past. Later, I got an internship at the Boston Globe, where he was a reporter covering the Boston Red Sox. This guy is everywhere I go, I thought. When we finally met, he had pretty eyes and a nice smile. That was it. We got engaged the next summer.

In 2011, I was pregnant with our first baby when Chris was offered a dream job as director of video and statistical analysis for the Calgary Flames. We moved to Canada when our son was five weeks old. Our daughter was born three years later.

When we were dating, Chris told me that ALS ran in his family. It’s a devastating neuromuscular disease with a life expectancy of six to 12 months. ALS mostly occurs sporadically, but about 10 percent of cases are genetic. That’s how it is in Chris’s family. In 2003, his uncle died from the disease; another uncle died a decade later. In 2016, Chris’s 28-year-old cousin died. Two years later, ALS took Chris’s dad from us.

Chris had a chance of having the genetic mutation that causes ALS, but we didn’t know if he did—it was always a question. Then, in 2019, when he was 37 and I was 35, he started to have numbness in two fingers on his right hand. Anyone else would have thought it was a pinched nerve, but we were on high alert.

We immediately started looking for a diagnosis. It takes, on average, more than a year to be diagnosed with ALS, which means most patients are unable to join what few clinical trials there are while they still have time. If you’ve had symptoms for any length of time, you become ineligible for many drug trials. These trials are designed for very select patients who are most likely to benefit—so it’s usually people who are in the earliest stages of the disease.

We moved quickly. That June, we flew to the University of Miami to see a specialist in familial ALS who had cared for Chris’s dad. It was the first time we’d both been away from our kids overnight. They were four and seven, and it was Father’s Day. We couldn’t tell them that we were going to find out if Daddy had the same illness that Grandpa Bob died from. We said it was a work trip and I was tagging along.

Chris went through testing and then we sat in a little room with the doctor. He told us that Chris was in the early stages of ALS. In the next breath, he told us that the first step was for us to join a clinical trial—Chris qualified for the first-ever stage three ASL trial for gene therapy.

I don’t know if the doctor ever said the word “hope,” but that’s what I deduced: We could have hope. Right away, I knew our story would be different because very few families with this disease ever get hope. Most people are told to go home, do what you love, get your affairs in order and die.

We were so scared, but we leaned hard into hope. Chris had a one-in-three chance of being on the placebo. A one-in-three chance is devastating when your life expectancy is less than a year. I look back on that time and wonder how we kept putting one foot in front of the other, not knowing. But we were pretty sure he was not on placebo because we saw an immediate slowing of the progression of his disease.

That October, Chris stepped onto the ice with our son, Cohen, for hockey practice for the first time since the changes in his hand. Chris hadn’t been able to get his hockey glove to stay on because his right hand just flopped around. But the equipment manager for the Flames molded Chris’s glove into a fist. Chris also wore a hand brace and I used a hair tie to hold the glove onto the brace. But then when he shot the puck, it lifted into the air and pinged off the crossbar! I knew then he wasn’t on the placebo.

In the fall of 2019, Chris was promoted to assistant general manager of the Flames, and we went public with his diagnosis in December. I started writing about it on my blog, Kelsie Snow Writes. As I kept writing, people sent me messages about their grief and their own sad stories.

At first, I found myself running hard from any sad story. I didn’t want to hear it. I wanted to stay locked in this world where we had the special sauce and everything was going to go well for us, and we were going to be the exception. But that’s not how this works. It took time to accept that.

This is a lonely place to be—this place of your husband never getting better. One of the hardest things about an illness (or a loss or tragedy) is the notion that nobody understands. Everyone else’s lives are still going on. And you’re here, socked into your own misery and nobody sees you. I realized I wanted to be around people who understood how I felt, the people who made me feel like I could keep moving.

To feel supported, I needed the stories of others. I needed to hear how people survive loss. So I started a podcast, Sorry, I’m Sad. I talk to people about their sad stories, and I feel lighter for having difficult conversations. I don’t ever feel like I’m weighed down by somebody else’s story.

In the beginning, I thought maybe the medicine was enough; that Chris’s ALS was not going to progress. But it’s been really hard lately. About nine months after we started on the trial, I went to take a picture of him and our daughter, Willa, and I noticed that his smile had a little droop. That started an aggressive cascade of losses, including control of his facial muscles. He lost his ability to smile, raise his eyebrows, make expressions. Chris said it was like being diagnosed all over again.

Speaking is getting more difficult. He can’t project or make hard consonant sounds. He lost his ability to swallow, and we worry about him choking, so now he uses a feeding tube.

We’ve dealt with a lot of scary things, like aspiration pneumonia and emergency rooms and the ICU. We’ve been sad and tired and angry. We have all these problems that we have to troubleshoot, and we have to grieve whatever the latest loss was.

I’m settling into this realization that, yes, it is a huge miracle that Chris is still alive. But he’s never going to get better. You wonder if people still want to hear about it.

I focus on the small moments. The other day, I watched my daughter stick her hand out the car window, moving it through the air like a wave. And I thought, That’s what I’m here for. These moments. What we have right now is beautiful.

Next: Caring For My Dying Mom Showed Me That Caregivers Need More Support, Too

Originally Published in Best Health Canada