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A Life with Narcolepsy – Joyce’s Story

Joyce was still a child when she knew that something was wrong.  Growing up in Rhode Island should have been idyllic, except that something was not quite right.

At the age of four she would see the clothes moving in the closet.  It seemed that every night she would be screaming for her parents to come and get the monster hidden in the hangers.  The only thing worse than that was the monster under her bed.  That one would keep her awake by tickling her feet.  Even in the summer heat, it was only by covering feet with blankets that the tickle monster could be held at bay.  Her parents would turn on the lights, shake out the clothes, and check under the bed.

“Go back to sleep,” they would tell her. “You’re having a nightmare.”

Even at a young age, she knew that it was something else.  How could she be having a nightmare if she was still awake?

As Joyce got older, she found the closet monster replaced with colorful visions of dancing figures with fanciful faces and festive hats.  The tickle monster has stayed for life.

Initially a poor student, it wasn’t until high school that Joyce realized that the more challenging her classes, the better her grades.  She nodded off during boring lectures and struggled with her notes.  Hours of homework and vigorous note taking covered up for her sleepiness and her reputation as the “absent-minded student†.  For the first time in her life, she made the honor roll.

Joyce went on to college but left.  Her decision to leave wasn’t based on her struggles with study, but for love.

She married an Air Force man, and after several years in New Hampshire spent several in the Philippines before landing in England.  After the birth of a daughter, the couple saw the arrival of twin girls.  Joyce found a job on the base in the NCO Club and established a good network among the other wives. She worked the second shift at the Club so that she could be there for the girls, and while she slept well, she found herself needing frequent naps.  During morning coffee with the neighbors, she found herself nodding off.  It was particularly inconvenient when she was in mid-sentence.  The girls of the coffee group would laugh but were understanding.  Living in a foreign country, working, raising three young daughters, and being a military wife added up.

The routine was broken after five years when she and her husband decided to split.  She gathered the girls and returned to Rhode Island.

Joyce found a home for her family and found two jobs that could make ends meet.  An illness found her unable to work, and during her time off she discovered a program that would help her to return to school. She found herself at the Community College and began taking computer science courses.  She began to again feel the effects of being a single mother, the toll of being a full-time student and began to nod off during boring lectures.  She thought back to her younger days, she plowed ahead, and found herself on the dean’s list!

A chance phone call from the Rhode Island Job Opportunity and Training Agency found her taking a job as a programmer.  She continued with classes, forged ahead with a promising career, and went about raising her girls.  And she struggled.

She would start a project at work, and anxious to show it off to her supervisor, would pull up the code that she had worked so hard on.  Changes that she had made would not be there!  A program that she had debugged would still be full of glitches.  Was someone playing tricks on her?   She would have a distinct memory of working on a project and see it unfinished.  Notes that she had meticulously taken became scribbles and unreadable.

Often, when her supervisor came to check on her, he would find her nodding off at her desk.  The screen that was supposed to be full of computer code would evolve into shopping lists, reminders to pick up milk, or dissolve into gibberish.

Things were getting difficult at home as well.  She was always tired, it seemed that the house was never clean, and cooking gave way to take-out.  She began to have financial troubles.  Bills that she had set aside to pay by a certain date were forgotten.  Checks that she had written and sent out were found lying around weeks later.  Was she irresponsible?  Was she lazy?  Was she an unfit mother?

After a lifetime of exhaustion, visions, and the “tickle-monster”, she went to a doctor who recommended a sleep study.  It wasn’t a character flaw.  It wasn’t stress.  It wasn’t anxiety or the struggles of a single mother.  It was narcolepsy.

As her symptoms have worsened, Joyce has tried working shorter hours.  One employer allowed her to keep a cot in a storage room.  She has tried working from home.  It has gotten harder to maintain a career when she can’t concentrate at a keyboard and her hands drop to her sides.

She has been in and out of the disability radar.  She has been on public assistance.  She has spent the past decade trying different medicines and therapies.  She has tried to be a mother, a grandmother, and a partner to those in relationships with her.

She works part-time now.  She is working for the Narcolepsy Network.  She still struggles with her disease, but she knows, she has narcolepsy.  The tickle-monster still visits, but he doesn’t scare her any more.

Joyce Scannell – Patient Testimonial from Caring Voice Coalition on Vimeo.