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Spotlight on JDAIM (Jewish Disabilities Awareness & Inclusion Month)
by Meryl Root, Lifelong Learning Chairperson

February is Jewish Disabilities Awareness, Inclusion and Acceptance Month.  I am standing here tonight to talk to you about my disability. I have never thought of myself as a person with a disability, just one who was always really tired.  I have faced numerous challenges throughout my life, but I think that I have been able to rise above them despite being really tired.  The first life-changing diagnosis was scoliosis as a teenager with the eventual spinal fusion surgery for which I am forever grateful despite the ensuing complications.  Being really tired makes it hard to do lots of things.  However, I completed two master’s degrees, one while teaching full-time in the inner city, NYC school system.  As a mother of twin teenagers I now spend time wondering how their young adult years will compare to mine.  It was during my teen years that I began fighting a powerful yet misunderstood condition called narcolepsy that took me 34 years to get properly diagnosed.

I grew up here on Long Island having moved from Westbury to Great Neck for the start of 7th grade.  I was often responsible for my two younger brothers when my mom was working.  I was generally quiet, especially at school, but enjoyed my science classes.  I usually did well until Romeo & Juliet.

In 12th grade English class, we were assigned to listen to Shakespeare’s Romeo & Juliet on a record player for days on end. I remember trying to listen, but the next thing I knew each day, the bell was signaling the end of another school day. I realized that I must have fallen asleep and missed it all, so I tried listening again at home, but fell asleep there, too. When the Romeo & Juliet unit test came around, I failed. How could this be?

Also that year, select AP Biology students were invited to attend a special lecture at the prestigious Rockefeller University, in New York City. I was so excited to be chosen, yet as the lecture progressed, I found myself fighting to keep my bobbing head still. Getting up after the lecture, I still felt out of it. My legs were wobbly and I had to hold on to the railing tightly as to not fall down the stairs on my way home.

In college, 8 a.m. psychology class presented a new challenge. During this class my neatly written notes devolved into squiggly lines that ran off the page on a regular basis. Likewise, I became convinced that the library was sprinkling “pixie dust” on the students as they entered because anytime I went to study there I promptly fell asleep. Avoiding the library, I tried studying elsewhere, but still struggled to stay awake. Thankfully, I was able to graduate in four years despite the daily struggles.

Years later, I quit my 9 to 5 job and returned to school where I earned a master’s degree in education. I subsequently started teaching middle school science in the inner city, a role I held for over 16 years (until the birth of my twins), despite excessive daily sleepiness.

At some point after college, I’d wake in the middle of the night on a regular basis and fall back to sleep in the early morning. When my alarm went off, I automatically hit the snooze button once, twice, even three or more times. Eventually I would drag myself out of bed, feeling very ill, but still manage to get myself to work on time. Once in the classroom, I would be distracted by my job and start to feel better. Unfortunately, waking in the night kept happening, and hitting the snooze button in the morning became a new form of exercise for me.

In addition, I started experiencing strong hunger pangs in the middle of the night. My stomach growled like an angry bear recently emerged from hibernation so much so that I would absolutely have to get up and eat or I wouldn’t be able to go back to sleep.  I would have to eat despite being told by doctors, “we don’t eat in the middle of the night”.  This along with my other sleep issues led me to see a range of different doctors over the ensuing years. Many things were suggested, including issues with blood sugar, periodic limb movements, chronic fatigue, and seasonal affective disorder.

Finally, following complications with the birth of my twins, I saw a pulmonary specialist with a strong interest in sleep medicine. He listened to me beyond the pulmonary issues and sent me for the overnight and daytime sleep study because diagnosis typically relies on a 24-hour sleep study that includes a nighttime portion (polysomnogram) and a daytime nap portion (multiple sleep latency test).  Soon after this, I was officially diagnosed with narcolepsy without cataplexy in my early 50s, about 34 years after the symptoms began.  There is usually an 8-15 year delay between symptom onset and diagnosis.

I was relieved that I now had an explanation for years of endless fatigue and napping anytime and anywhere I could.  As it turns out, narcolepsy is a chronic neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. It affects 1 in 2,000 people – 200,000 Americans and 3 million people worldwide.

For someone who doesn’t have narcolepsy, the excessive sleepiness of narcolepsy compares to how one might feel after staying awake for 48-72 hours. Interestingly, disrupted nighttime sleep is another major symptom of narcolepsy.  Unlike public perception, people with narcolepsy do not sleep all the time. Timing of sleepiness is “off” with narcolepsy so one may fight sleepiness during the day but struggle to sleep at night.

There is currently no cure for narcolepsy. Treatment for symptom management varies widely by person and it often takes a long time to find the right combination of treatments.  For me, I had already been taking daytime stimulants for the excessive sleepiness, and I added a nighttime sedative medication to promote deeper sleep.

Today, I am proud to be raising my twin daughters with my husband. I am also the chairperson of Temple Tikvah’s Lifelong Learning Committee leading the coordination of our monthly events.  In this role, I relish the compliments I have received from event participants on the quality of the programs over the years. It feels great to be able actively participate in my community despite narcolepsy.

I’m sharing my story of narcolepsy with you for the next generation – for anyone who may recognize him or herself or a loved one in these experiences.  Raising awareness of this misunderstood condition is important to me to help others find proper diagnosis and treatment sooner and reduce the stigma that surrounds narcolepsy.
 I am grateful to Rabbi Sheinberg for the opportunity to share my story with you tonight.  I am also grateful to Julie Flygare, author of Wide Awake and Dreaming, A Memoir of Narcolepsy and founder of Project Sleep.  The Rising Voices of Narcolepsy program taught me to write my story.  It also provides a platform for educating the public through personal stories.

Fri, April 19 2024 11 Nisan 5784