When sleep rewrites the narrative

“What does it feel like?” she says, when asked to describe narcolepsy. “It’s like asking someone to function after staying awake for 72 hours straight. Decisions blur. Conversations warp. And sometimes, you just drop, mid-sentence, into a nap you didn’t ask for.”

I met Shannon 17 years ago in a Tuscany stroller class, where my daughter cried so much, she was basically the class’s soundtrack. But Shannon welcomed me with kindness, warmth and introduced me to the holy grail of early motherhood: the Baby Björn.

As we got to know each other, she casually mentioned she had narcolepsy. I assumed it just meant she got a little extra sleepy sometimes and needed the extra occasional nap. Simple, right? Not quite.

She gently explained that it can happen anytime, and that even something funny can send her straight into REM sleep.

I didn’t fully grasp it until a few of us were at Calaway Park with our girls. A hilarious moment unfolded (very likely something her youngest, Jessica, said or did), and we all burst into laughter. Shannon raised her hand mid-laugh and said, “One second...”

And down she went.

Now, being the supportive, empathetic humans we are...we laughed even more while Shannon had a “mini siesta” half sitting up, on the ground, in the middle of Calaway Park.

At the time, we thought, Well, that was hilarious, but we didn’t understand how deep of an impact narcolepsy had on her, until the Stampede Parade.

“The community of Tuscany and some very special people that live here have shown a level of compassion that I find lacks in the world today,” Shannon says. “I am grateful and lucky to have the friendships I have made in the community.”

Because of the severity of her symptoms, Shannon hasn’t driven in over 25 years.

“I have also discovered that people are open to help if asked. The friendships developed in Tuscany have allowed me to put my kids in activities outside the community,” she adds.

There was a time, Shannon admits, when her strategy was simple: ignore it. Push through. Try to live like everyone else. But eventually, she realized that resisting her reality wasn’t resilience. It was denial.

That acceptance led to boundaries, routines, and a full-on Narcoleptic Survival Kit that includes everything from meditation to high-protein meals to two strategic naps a day. Sleep hygiene is her operating system.

Narcolepsy has taught Shannon patience, perseverance, and grace. It forced her to redefine success, not by how busy she is, but by how present she can be.

Her advice for others facing a life that looks different than expected?

And doing so with compassion from others makes all the difference.

In a world that often glorifies hustle, Shannon shows us another way. She just does it with her eyes closed sometimes.

Gallery intro

Her walks around Tuscany

Four seasons of walks

Art intro

Her digital art

Shannon finds making art therapeutic. She also loves to paint.

Numbers

Shannon, by the numbers

• 22 | years | in Tuscany, steps from the coulee.
• 25+ | years | without driving, because of the severity of her symptoms.
• 2 | naps | every day, morning and early afternoon.
• 1–2 | hours | the most her bedtime shifts, even on weekends.

Source: Shannon Humphrey Hall, in conversation with The Local.

Signs

The four signs

What narcolepsy can look like

• Daytime sleepiness Constant and overwhelming. Shannon compares it to functioning after 72 hours without sleep.
• Cataplexy A sudden loss of muscle control, often set off by strong emotion. For Shannon, a big trigger is laughter.
• Sleep paralysis Brief moments of being unable to move while falling asleep or waking up.
• Vivid hallucinations Dream images and sounds at the edge of sleep, known as hypnagogic hallucinations.

Facts

This feature is not medical advice.

Text: Hero

• kicker | Tuscany Cover Story · First published July‑August 2025
• once | once upon a time
• credit | Photos supplied by Shannon Humphrey Hall. Written by Désirée Rodgers.
• button 1 | Start reading
• button 2 | Her survival kit

Text: 72 hours

• kicker | What narcolepsy can feel like on any given day
• unit | hours without sleep
• day 1 | Day one
• day 2 | Day two
• day 3 | Day three
• quote credit | Shannon, on narcolepsy

Text: Chapter one

• title | The Uninvited Guest

Text: Cataplexy graphic

• title | Why Laughter Causes Cataplexy
• awake | AWAKE
• asleep | ASLEEP
• step 1 title | 1. The switch
• step 1 | A brain chemical called hypocretin helps keep us awake. In type 1 narcolepsy, the brain cells that make it are lost.
• step 2 title | 2. The trigger
• step 2 | A big laugh. Strong emotions like laughter, surprise or excitement are the classic trigger.
• step 3 title | 3. The flip
• step 3 | The muscle shut-off that normally only happens in dream (REM) sleep switches on while she is awake.
• step 4 title | 4. Down, but aware
• step 4 | Her muscles go limp within seconds. She stays fully conscious, usually for seconds to a few minutes.
• sources | Sources: National Institute of Neurological Disorders and Stroke; Merck Manual; Sleep Foundation; MedlinePlus; Cleveland Clinic. Not medical advice.

Text: Stampede

• label | Scene · The Stampede Parade

Text: Big lines

• full-body | Full-body shutdown.
• resisting | Resisting wasn’t resilience.
• denial | It was denial.
• realized | and then she realized…
• superpower | Turns out, doing less is a superpower.

Text: Day plan

• kicker | A day, honoured
• title | Rest is now part of the plan
• step 1 | Wake, same time every day
• chart 1 | Wake
• step 2 | Morning: Journal + meditate
• chart 2 | Morning: Journal + meditate
• step 3 | Nap one
• chart 3 | Nap one
• step 4 | Early afternoon: Nap two
• chart 4 | Early afternoon: Nap two
• step 5 | Move
• chart 5 | Move
• step 6 | Evening: Journal + meditate
• chart 6 | Evening: Journal + meditate
• step 7 | Same bedtime, cool dark room
• chart 7 | Same bedtime

Text: Cost graphic

• kicker | The cost of a day out
• title | Every outing comes with a rest day
• row 1 | One outing: the outing day, then one rest day
• row 2 | A holiday: the trip, then up to seven days of recovery
• outing | Outing
• rest day | Rest day
• trip | The trip
• note | After a holiday, up to a week of increased symptoms: “I will not commit to appointments, connecting with friends or family.”
• source | Source: Shannon Humphrey Hall, in her own words. Illustration, not to scale.

Text: Survival kit

• small | Shannon’s
• title | Narcoleptic Survival Kit
• sleep kicker | Lights out, on schedule
• sleep line | Every item in Shannon’s survival kit protects one thing: her sleep.
• disclaimer | Shannon’s own routine, shared for awareness. Talk to your doctor about what is right for you.

Text: Dreaming explainer

• title | Dreaming, while wide awake
• intro | Narcolepsy is a neurological condition, not a lack of willpower. Its signature: dream sleep arrives far too early, and sometimes slips into waking hours.
• row 1 | Typical sleeper
• row 2 | Narcolepsy
• bar label | REM
• ticks | 0 min, 30, 60, 90, 120
• note | Dream (REM) sleep usually begins about 90 minutes after falling asleep. In narcolepsy, it can begin within about 15.
• sources | Sources: Sleep Foundation; Merck Manual; MSLT diagnostic criteria (ClinicalTrials.gov study protocol).