Photo by Giulia Marotta, via Pixabay

Narcolepsy is a serious neurological disorder that causes victims to fall down or fall asleep at inconvenient moments. It can be cruel, embarrassing, and heartbreaking. This memoir tells it all.

Narcolepsy Memoir

Wide Awake and Dreaming by Julie Flygare won first prize for Autobiographies and Biographies at the San Francisco Book Festival in 2013.

Julie Flygare was only 22 and in her first year of law school when she noticed something very odd. Whenever she laughed, her knees lost muscle tone and turned to jelly, threatening to dump her on the floor.

Soon thereafter she noticed it was hard to stay awake during class. Not a great way to excel at law school! My heart went out to her.

By the end of that year, her grades were lack-luster and her knees indeed failed her. She had episodes of temporary paralysis while crumpled up on the floor.

Narcolepsy Symptoms

For those of us who have never had narcolepsy, who probably don’t even know anyone who has it, we may think of it as a disease that makes people fall asleep too much. But it is much more than that.

Narcolepsy is a neurological disorder that affects people in a variety of disturbing ways.

The main narcolepsy symptoms are:

1. Sleep paralysis – the afflicted person will believe they’re awake, but be totally unable to move. I’ve heard of people without diagnosed narcolepsy complain about this event, but as described by Julie Flygare in her memoir, this experience was far more devastating for her, and it happened more frequently.

2. Cataplexy – This was a total shock for Julie Flygare. She suddenly started losing control of her knees and they would fold on her, sending her to the floor. Cataplexy is characterized as a loss of muscle control. Very disturbing!

3. Sudden sleep episodes, at times in very inconvenient locations. Julie was worried about sleeping while in law school classes, and even worse, sleeping while driving!

4. Hallucinations – These were paired with item 1, sleep paralysis, for Julie. She was awake, unable to move, and imagining events that weren’t really happening, such as a man breaking into her home. Totally terrified, when she was finally able to move, she searched the house and realized nothing like that had happened.

5. Insomnia – Can’t sleep when you want to, and then sleep when you shouldn’t! As you can see, this is a devastating condition that really messes with a person’s ability to get things done efficiently.

6. Microsleep episodes – Some narcoleptic people seem to be functioning without any awareness at all. Have you ever driven a long distance and then suddenly realized you had no recollection of anything for the last fifty miles? Well, that’s sort of what it feels like, but a person could be at work, eating lunch with friends, or anything, and then suddenly become aware of a feeling of lost time, with no memory of what went before.

Visitors At Night

Julie Flygare wrote about her strange night visitors.

While paralyzed in bed, intruders would enter her home and terrorize her. It took months before she realized that this too was a symptom of narcolepsy.

She would dream of people walking into her bedroom with malice on their minds. It seemed altogether real and extremely frightening.

When she was finally able to wake up and move, she never found any signs of home entry.

Can you imagine living that way?

Julie Flygare’s Education and Employment

When Julie started experiencing narcolepsy symptoms she was in her first year of law school. Her heart was set on becoming an attorney, and so when suddenly she started losing control of her knees and falling down, it was miserably frightening and inconvenient.

Soon, however, her concerns turned to fears of falling asleep in class! It took time before she got a diagnosis, so there was a lot of uncertainty and confusion over what was happening to her.

She managed to persevere. You will love this part of the story. Julie Flygare never gave up.

As a mom with young adult children, and as a former college student myself, I completely sympathized with Julie’s predicament. She wanted so much to become a lawyer, but seriously, would you want a lawyer who might fall down in court, or fall asleep?

One person suggested she try for a museum job as she’d already graduated from college with an art history degree, but it wasn’t what she really wanted. Her father was a lawyer, and she’d been planning a law career for many years.

Employment Considerations for Narcoleptics

What are the employment opportunities for a person with narcolepsy symptoms?

To begin with, one would have to explain to a potential employer about the narcolepsy. For a lot of employers, the response would be that a narcoleptic would not fit in well with their line of work. Simple as that.

For the lucky narcoleptic person, a compassionate employer might welcome him or her to the team, and watch out for the new employee. However, how likely is that? Not very!

Could a narcoleptic hide his or her condition? The answer is – maybe. It depends on how advanced or severe the condition is, or how well medication works to conceal the problems involved with having narcolepsy.

Are there laws in place to protect narcoleptic people from job discrimination? Well, yes, there are. Discrimination against the handicapped is forbidden in the USA so employers are expected to provide reasonable accommodations under the provisions of the Americans with Disabilities Act.

Narcoleptic workers may try to hide their condition, depending on the type of job they’re employed to perform, or they may discuss the condition with their employer to get those reasonable accommodations. For example, asking for longer breaks so it is possible to take a brief nap.

Other ideas for maintaining employment as a narcoleptic person are to go to sleep early at night to try to get enough sleep, working with the doctor to get medications working correctly, and taking a short break every twenty or thirty minutes to get up and walk around.

For more information on employment for narcoleptic people, see At Work, Narcolepsy on the Harvard University website.

Medical Suspense Drama in a Memoir

The memoir, Wide Awake and Dreaming, is suspenseful.

Will she get help for the severe narcolepsy symptoms?

Will she finish law school?

Will she work in a museum, or get a legal job?

I’m not divulging the spoilers… you must read the book to find out.

My Reaction to Wide Awake and Dreaming

In my entire life I’ve met only one person with narcolepsy. This woman, who was about 45 years old, was staying at a battered women’s shelter at the same time I was, way back in 1981. She did indeed doze off several times during our conversations. This was the only exposure I’d ever had to the disease.

Because my experience with narcolepsy symptoms was minimal I knew nothing of the night terrors or the cataplexy, which is what the loss of muscle strength while laughing is called. I had no idea that narcolepsy could affect a woman as young as 22, at the start of her adult life.

I’m grateful to Julie Flygare for writing this memoir, for informing us of the progress of her disease and how it affected her young life. I consider this a memoir very much worth reading.