REST ASSURED

REST ASSURED
'Navigating Narcolepsy with Courage and Creativity'
Exclusive Interview with Michelle Weger
Featured in 'Innerviews'
Hosted by Allié McGuire

​Narcolepsy is often misunderstood, reduced to punchlines about “falling asleep anywhere.” For Michelle Weger, it reshaped her life completely, rerouting her from the dream of becoming a neurosurgeon to building a multi-million-dollar business engineered around rest, resilience, and radical systems thinking. Alongside her Great Dane service dog, Quinn, Michelle is redefining what it means to live—and thrive—with an invisible disability.

ALLIÉ: For someone who's never really understood what narcolepsy is or actually feels like—including me—how would you describe a sleep attack in real life? What's happening in your body and your mind at that moment?

MICHELLE: That's the best way to describe it. You know when your phone starts to get maybe two-and-a-half, three years old, the warranty’s worn off, and all of a sudden the battery seems to drop from like 60% to 20% just like that? Yeah, it's very similar to that—except instead of 20%, it's more like 5%. So you're in a serious panic. You've got to find a charger—in my case, a place that I can safely sleep. Anywhere and everywhere in public? Not exactly the safest, especially for a woman.

​ALLIÉ: And so when that happens and you just go into sleep mode without granting permission—without warning—how long do these episodes last? When do you wake, and how do you wake?

MICHELLE: Everyone's narcolepsy is different in terms of the length. For me, as short as five minutes, as long as half an hour. I'm very fortunate, though, that I have a service dog. For those who saw the video version, you saw her giving me a kiss a second ago. She actually alerts to oncoming sleep episodes before they happen, which means I can take medication to stop them. Since I’ve had her, I have not fallen asleep in public even once.

ALLIÉ: That's wild. OK, so—game changer. I want to get more into Quinn, but I want to stick with you for a moment. I'd like to go back, because you once dreamed of becoming a neurosurgeon and a pilot—you were flexible with your big dreams. But narcolepsy rerouted that path. Could you take me back to that time? What did letting go of those dreams feel like, look like, and how did you find the resilience to find a new dream?

MICHELLE: At the time my symptoms started, I was 17. I was in university in a super prestigious program that only accepted 10 people a year, and we were already down to only seven people at this point around Thanksgiving. I started falling asleep in class. The moment that happened, it was impossible to sustain my grades in this particular program, which was diagnostic psychology—the study of cells. Meaning microscopes. In the dark. All day, every day. Game over for a narcoleptic.

So in that moment, it was a quick pivot to ensure I didn’t fail. It was a panic response. I had to switch to something more hands-on and physical, so I didn’t fail my first year of university. I changed to environmental science and ecology because you got to go on boats, study fish, collect specimens in nature—all things that kept my body moving. I had no idea what was going on. I wouldn’t be diagnosed for five years after that point. So at that point it was all symptom management and fast decisions. Otherwise, I would’ve failed out, lost the money, and been in a much worse spot.

ALLIÉ: Yeah. So it’s crazy to me that the diagnosis didn’t come until five years later, after symptoms started presenting. What did you think in between? Did you think you were just vitamin deficient or something?

MICHELLE: They’ll do iron tests, thyroid tests, depression quizzes, and when all those come back normal, they go back through that same list again and again. I get it—I was young, I was very fit at the time from having done provincial-level gymnastics as a teenager. So I looked very “normal.” And when a university student says, “I’m really tired, I’m sleepy all the time,” it’s like—yeah, it’s hard when you’re away from home for the first time.

Narcolepsy is very rare—one in 2,000 people is the stat. Most doctors I’ve met hadn’t met one before me. But what’s wild about the five-year timeline is that my diagnosis was fast. The average right now is 10 to 15 years from onset to diagnosis. That’s why platforms like yours are so vital and why I appreciate this opportunity so much.

​ALLIÉ: So what’s the thing then? How can we change this? Is there a test that can be done? Or do people just need to be clued in to say, “Maybe we should test for it”? How does it get diagnosed?

MICHELLE: It gets diagnosed by an overnight sleep study followed by a daytime study. When I went, it was me and a bunch of older men there for sleep apnea tests. You get into the bed and go to sleep, and pretty quickly after I fell asleep, the techs woke me up again and added a whole bunch more wires and leads because it was very clear this wasn’t sleep apnea. They needed even more data. In the morning, everybody else got to go home except me. I had to stay for the daytime test where you get five opportunities to nap in a dark room. They count not only how many times you sleep, but also how many times you dream. With narcolepsy, you’re so sleep-deprived that we actually have early-onset REM—we start to dream in less than five minutes versus the normal 90. That’s a very clear diagnosis once that test is performed.

ALLIÉ: That’s wild to me. OK, so let’s go back to Quinn here for a minute. Enter Quinn, the Great Dane with a job description most of us can’t quite imagine. How does Quinn sense a sleep episode before you do? And what does she do that makes the difference between danger and safety for you?

MICHELLE: We don’t know what exactly she’s sensing. That’s something very exciting to me as well. She’s the second narcolepsy service dog I’ve had, and she learned from the first one, Max. The fact that there is something they are reliably sensing is really exciting, because I hope that could lead to greater research and potentially even better treatment or a cure. If there’s something dogs can smell, then there’s something that could be measured. What that something is—it’s their secret for now.

ALLIÉ: Mind blown right now. So walk me through all of this—what happens? What does she do when she smells whatever she smells?

MICHELLE: She’ll start by nudging my elbow until I acknowledge her. I always carry medicine with me, and I’ll take one. As long as she sees it, she’ll then stay very close. Until the medicine starts to kick in, she’s watching me like a hawk. At that point, my heart beats very quickly from the medicine, which makes it nearly impossible to fall asleep.

ALLIÉ: Wow… So what is it like to have this gentle giant of yours, Quinn? It’s not like a little dog you put in a bag and carry around cutely in an airport. What is life like with Quinn?

MICHELLE: With a 130-pound sidekick, it’s a lot of work. It takes a lot of management, pre-planning, and thinking. Of course, you get a lot of comments, many of them not kind. But the alternative is that I wouldn’t necessarily be safe to go in public by myself. That would be such a major hit to independence that all of the work and hassle—when I look at the equation, it’s a no-brainer. I can’t imagine not having a service dog, because I want to be able to be part of society, contribute, and do all the things everyone else can. This makes that possible.

​ALLIÉ: Absolutely. Beyond your own story, you’ve become an advocate for how schools and workplaces can better support people with invisible disabilities like yours. If you could give teachers or managers one quick fix to put into practice tomorrow, what would it be?

MICHELLE: The one thing I suggest everyone does is not make assumptions about what could help someone, and instead ask them directly. Don’t say “Can I help you?” Say “What can I do to help you?” Then let them tell you.

The person with the invisible disability lives with it every day. They know what could be helpful. But when someone offers supports you don’t need, it’s awkward, because many of us are used to being rejected by so many people over so many years. You don’t want to say, “No, that won’t help me,” because the fact that someone is trying is such a beautiful thing. By simply saying, “What can we offer to help?” you give the same gesture while opening the floor for that individual to express their needs.

ALLIÉ: One more question for you today. If there’s one message you want people to carry with them about living with narcolepsy and about seeing possibility instead of limitation, what would it be?

MICHELLE: When I read the stats about narcolepsy—how it affects marriages, income, employment, health outcomes—it was awful. Very depressing. To my 21-year-old mind, when I was diagnosed and read it, it felt like a blueprint that said: “You have no chance. You probably shouldn’t bother.” Thankfully, my parents raised a very determined person. We moved a lot when I was a child and teenager—every two years. I was forced to restart again and again. As much as I hated that growing up, I think it was the beginning of my resiliency. When life I’d planned for was no longer available, I had to pivot.

What I always encourage people to do when they’re looking at a situation is ask: if you do nothing, what’s the most likely outcome? For me at diagnosis, I didn’t have a job yet. I was living in my parents’ house. So if I did nothing, worst-case and best-case was still living in my parents’ house with no job. If I tried and failed—same situation. Anything other than the very worst outcome of trying was better.

At that point, the math was clear: 99 out of 100 situations, I’d be better off by trying. I like laying out that logic when I’m making decisions. Trying is scary, but’s it’s only scary because I don’t want to fail. But if I didn’t try, well, I’d already failed. If you fail after trying, you’re no worse off. ∎

Find & follow Michelle and Quinn on Instagram:
​@daneonaplane