As a grant writer in rural Oregon, I documented the need for bridge repairs, water treatment and other infrastructure in surrounding communities. When I was 48 years old, as I drove to meet the mayor of a small town, a deliciously tired feeling nearly overcame me, so I pulled over, fell asleep and awoke to a police officer tapping on my window. “Are you OK?” he asked.
I thought I was. But a few days later, while cross-country skiing, the soft, dreamy feeling happened again. “I’ll just rest a bit,” I thought. I sat down in the snow, leaned up against a rock in the sun, fell asleep and woke to concerned friends who had turned around to look for me.
Concerned about what was happening to me, I visited a specialist who scheduled sleep tests, which required me to spend 24 hours with sensors glued to my scalp.
After the tests were completed, I went to his office to discuss the results and go over some questions he had for me. He asked if I fell down without explanation. Yes, I had a few times. Didn’t everyone? Then he asked about head trauma. When I was 11, I ran into the street and was hit by a car. The resulting coma and concussion left me dizzy and nauseous for a year. My poor parents were sick with worry but I was just concerned with whether I’d get to go on the class trip to Disneyland.
“What about unexpectedly falling asleep?” the specialist asked. The first time I remember it happening, I was 13 and at a slumber party at my friend Patty’s house. I woke up to the other girls laughing at me. The Miracle Whip they had put into my mouth after I konked out was dribbling down my chin. I thought it was funny, too!
“Do you have vivid dreams?” he questioned. Oh, yes. In fact, I sometimes find myself in dreams while I am awake. Walking on a trail, I’d see myself on the path from above. “Hallucinations? Voices?” he continued. I hesitated. Yes, a few. When I was 27, I had a waking dream where my grandmother was dying and came to say goodbye. She wasn’t even sick, so I didn’t think much of it. But, in fact, she had died that very evening ― so ... was that actually a hallucination or was that something else entirely?
And, yes, I did get clumsy when I was tired. I might fall down or drop things — wasn’t that normal? Just as I was thinking he was making a huge deal out of nothing, he told me he believed I had post-traumatic narcolepsy, a condition that caused me to suddenly and unexpectedly fall asleep and also came with a variety of other symptoms related to sleep. He said it was possibly from my car accident and the resulting head injury I suffered when I was 11. “Then why, so many years later, did it suddenly get much worse?” I asked.
“We don’t know,” he said. “There are many theories as to why the condition may develop.” Whatever the cause, I couldn’t deny that something was amiss: I was constantly at the mercy of sleep.
He gave me a prescription for Ritalin and sent me on my way. But as I left his office, I couldn’t quite bring myself to accept that I was really a narcoleptic. I didn’t even really know what it meant or what it would mean for me or how my life could or would now change.
It’s funny, but in the aftermath of my new diagnosis, I kept thinking about my Aunt Harriet and how I had always tried to live my life just like she did. She was the healthiest of all of my relatives ― she didn’t smoke or drink alcohol and never took as much as an aspirin. I wondered what she’d think about my diagnosis and if she’d be disappointed in me for taking medicine to control it. Still, wanting to be a good patient, I filled my prescription. And, I have to admit: It cleared my head and helped me focus at work.
However, if I didn’t take it on time, ate a big meal or stayed up late, I could fall asleep during a conversation. One night, making strawberry jam with a friend, my legs gave out. I fell to the floor and couldn’t move for a few minutes. This was the first time I felt the loss of muscle control known as cataplexy ― which often affects narcoleptics ― in such a dramatic and pronounced way, and I was horrified.
I didn’t want to obsess over my sleep issues but I did worry about what might happen if I forgot to take my medicine or ran out of it. I took extra when driving and made sure it was with me at all times, but if I took too much in a social situation, I’d clench my teeth, bite my fingernails and become obnoxiously chatty. I was sometimes so tired of being tired that I just wanted to sleep and dream forever. I isolated myself at work and seldom ate lunch because it didn’t fit into the every-four-hours medication schedule. I became more antisocial, made lame excuses for my behavior, regularly canceled plans with friends ― it was just easier ― and eventually moved to Colorado.
Fast-forward 12 years later to one cold Friday afternoon. I had eaten a huge sandwich and then headed down the mountain from Telluride to visit my son and his family in Phoenix. I had taken my prescription but hadn’t considered that I was at risk for experiencing a sleep attack because of the large meal I had consumed prior to my trip. A half-hour into my drive, I suddenly got sleepy. But snow was piled up on both sides of the road, so I kept driving while looking for a place to pull over and rest.
The next thing I knew, frantic beeping jolted me awake. I had crossed the dividing line in the road and was heading straight for a Volkswagen bus. Thankfully, I swerved back into my own lane with just enough time to avoid hitting the bus. The family in the VW barely made the curve ahead of them after I almost ran them off the road and over the steep cliff beside it. Wide awake and shaking, I turned around as soon as I could, checked to make sure the family was OK and called my son to say I wouldn’t be making it. I didn’t drive for weeks, haunted by the terrified look I saw on their faces. I had nearly killed not just someone, but a whole precious family of someones.
After another set of sleep tests and another neurology appointment that confirmed and shed more light on my narcolepsy, I was finally ready to take my diagnosis seriously and pledged to learn as much as I could about my condition.
“The next thing I knew, frantic beeping jolted me awake. I had crossed the dividing line in the road and was heading straight for a Volkswagen bus. ... I had nearly killed not just someone, but a whole precious family of someones.”
I have always loved the pleasant, deliciously sleepy sensation that can bring on vivid dreams. But with narcolepsy, the brain engages in excessive REM, or active dreaming sleep, which doesn’t allow for normal, restful sleep to occur. In addition to experiencing too much REM both day and night, I found myself suffering from “automatic behavior,” which is when a person with narcolepsy finds herself in a zone between being awake and being asleep. Once, I was blissfully browsing at a bookstore when I realized I was two hours late for a doctor’s appointment. Automatic behavior had kicked in. I was also plagued by “sleep paralysis,” another condition common with narcolepsy, where a person finds herself unable to move upon waking from a vivid nightmare. This frightened me for years, but I eventually learned to calm myself with deep breathing.
Some people who suffer from narcolepsy fall asleep with no warning at all. In my case, I hear a buzzy sound about 15 minutes before a sleep attack (similar to the “aura” epileptic people get). I’ve determined my most awake and alert time is between 9 a.m. and 3 p.m., so I plan accordingly. I don’t do well with routine jobs but excel where intensity is balanced with rest and good sleep. I don’t drive for more than two hours at a time and am happy to say I have never been in an accident or even gotten a ticket in over 30 years.
I consider myself lucky to have good medical insurance that has allowed me to go through the necessary tests to diagnose my condition and eventually obtain the correct prescriptions to treat it. I can’t help but wonder how many people are out there living with undiagnosed narcolepsy, especially with all of the recent reports of military and sports injuries causing head trauma.
Life is much easier now that I’m 70 and retired. Stimulating conversations and learning new things keep me awake but I’m wide awake fewer hours than most people so I prioritize my time. I am grateful for the newer, extended-release medicine I take every morning, but I make sure to be close to my pillows by 8 p.m. I don’t make excuses for my behavior anymore. I will talk about my narcolepsy. If I leave a dinner party, my friends and family will know why I need to go home.
My life may seem limited to some people, but to me, it is rich beyond anything I could have imagined. I have profoundly deep relationships with my friends and family, especially my children and grandchildren. I travel, write, swim, walk my dog, and have art and quilt projects. But most of all I love to sleep and dream. In our culture, sleep is often a last priority. But for those of us with narcolepsy, it must be a top priority.
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