I’m Only Sleeping

“Living is easy with eyes closed, misunderstanding all you see.”

Like my shih tzu, I am a purebred. Actually, maybe purebred isn’t the best term since my blonde hair, blue eyes, fair skin and impressive height seem to suggest that vikings likely got the best of my Jewish ancestors somewhere along my lineage. More precisely, like my shih tzu, I am inbred. My dad’s grandparents were first cousins. Apparently, back when cars were powered by feet, there were slim pickings of Jews so it was favourable to marry within the family rather than marry a gentile, god forbid. Religion makes people do some really crazy shit.

Mr. Bear is a muggle. His mom converted before he was born so he is a card-carrying member of the tribe but luckily for my kids, that healthy, mutt blood flows deep within him. This was especially helpful when I was pregnant with Rylie and we discovered I carried the gene for Tay-Sachs. Blame it on the kissing cousins or my Ashkenazi ancestry – both of which increase my risk for carrying this pernicious gene. Fortunately, my mongrel husband saved the day with his Tay-Sachs free genes and dashing good looks.

Aside from the Tay-Sachs gene, my thoroughbred dad and I are relatively normal. I use the term “normal” loosely of course but other than being the personification of shlemiel and shlimazel we are rather unexceptional. My dad will no doubt argue with my last statement and tell you he’s a professional athlete and a gifted comedian but in reality he’s just delusional. The fame of playing on a geriatric Maccabi basketball team and performing at Yuk Yuk’s on amateur night has gone to his head. The only thing my dad and I are both truly gifted at is the art of sleeping.

“I’m so tired, I don’t know what to do.”

Slumber is my vice. I don’t drink, I don’t smoke, I just say no to drugs and I don’t even drink coffee but I am completely addicted to sleep. I live a life of sleepy excess. My habit started when I was 14 and has worsened with age. I now need more sleep to get the same high I once got with much less sleep. I have developed a severe dependency on siestas and if I miss a nap or awaken too early, I suffer terrible withdrawal symptoms such as headaches, dizziness, irritability and acute bitchiness.

My addiction is all consuming. It has affected every aspect of my life from my days as a student to my professional career and even into motherhood. In high school, I gave up on the basketball team because practice was too early in the morning. When I was in university, I purposely arranged my schedule so that my classes started no earlier than 2:30pm. In law school, there were many courses I was interested in taking but ultimately passed on due to their prohibitively early start times. As a lawyer, I could often be found snoozing at the back of the library in the always barren professional ethics section. I had seriously considered investing in a George Costanza desk to satisfy my afternoon cravings but ended up switching careers to one that allowed me to work from a home office with a much closer proximity to my bed. As a sleep deprived first time mom after Rylie was born, I sunk into postpartum depression. When Dylan was born, rather than investing in his education, we spent $20K on a night nurse for four solid months to ward off a second bout of postpartum. It was money well spent. When both my kids were 4 months old, I turned into a sleep Nazi and whipped them into model sleepers in two nights using the cry it out method (judge me if you must but it worked brilliantly for both my kids and gave me my sanity). On a few occasions, while driving, thrice with Rylie in the car, my need for sleep was so overwhelming that I had to pull into a parking lot to take a quick snooze for fear I couldn’t safely make it home.  Like a drunkard, I have been caught sleeping in many embarrassingly precarious locations including a grassy knoll at Marineland, several porcelain thrones, a cafe in Venice, every single meditation during my mindfulness course and at Cirque du Soleiel’s O in Las Vegas.

Shut eye in Venice
Shlufing in a Venetian cafe.

“Please, don’t wake me, no, don’t shake me
Leave me where I am, I’m only sleeping.”

In addition to sleeping frequently and for great lengths at a time (a 4 hour nap is standard) I also sleep incredibly deeply and very soundly.  This sleeping beauty is harder to wake than Briar Rose. A kiss from Prince Phillip or even Prince Harry won’t do any good. In fact, poking, prodding, shaking, crying and even shouting often won’t wake me. Neither will bouncing on the bed or arranging Scrabble letters on my head.

The dirty side of deep sleep
The ugly side of deep sleep revealed

One time (not at band camp) our house alarm was blaring for half an hour and it did nothing to disturb my slumber. If you do somehow manage to wake me, watch the fuck out. Upon waking I am miserable, mean and vengeful at the stimulus that caused my wakening. Several alarm clocks have been sent to early graves after daring to wake me.

“Everybody seems to think I’m lazy
I don’t mind, I think they’re crazy.”

Despite all this, neither myself nor my family thought anything of it. After all, my dad had a similar sleep habit and was often caught “resting” his eyes during business meetings. We both just liked to sleep and perhaps we were a tad on the lazy side. My propensity for sleep was part of my quirky persona. I just happened to be great in bed. Mr. Bear mocked me relentlessly for regularly getting up at 11am on the weekends, showering, having lunch and then jumping right back into bed. My mom coined the term “narco-sleepy” to describe my ability to sleep anytime, any place, anywhere.  It wasn’t until my son was diagnosed with severe narcolepsy and cataplexy that anyone gave it a second thought.

“I am he, as you are he, as you are me, and we are all together.”

Narcolepsy has a genetic component and tends to run in families. Approximately 8 – 10% of people with narcolepsy have a close relative who has the disorder. First-degree relatives (parents, siblings, children) of narcoleptics have a 20-40 time greater risk of developing the condition compared with people in the general population. Most experts agree that genetics are not the only factor involved and that narcolepsy likely involves a combination of genetic and environmental triggers. Researchers have discovered the HLA gene DQB1*06:02 is the most important factor predisposing to narcolepsy, and is found in 90% of narcolepsy cases. Genetic testing to determine whether someone is a carrier of this gene is not available in Canada; however, Dylan’s doctors at Sick Kids Hospital in Toronto have sent a sample of his blood to the US to be tested for the gene. The sample was sent in September 2014 and almost a year later we are still waiting for the results.

Given that genetics may play a role in the disorder and given my unusual sleeping habits which I had never previously considered to be unusual, Dylan’s doctor suggested I undergo a nighttime sleep study as well as a daytime sleep study known as the Multiple Sleep Latency Test (“MSLT”). Both basically involve sleeping in a facility slightly less glamorous than the Howard Johnson with a bunch of wires stuck to your head. The night portion is pretty straight forward – you go to sleep and the techs monitor you. Kinda creepy to know there’s a strange dude watching you sleep all night who may occasionally come into your room to adjust the wires but on the bright side, I knew he wouldn’t wake me up. The MSLT is a bit different. It required me to sleep every two hours for 20 minutes five times during the course of a day. Aside from the wires, the lacklustre accommodations and the annoying wake up calls 20 minutes after lights out, it was a rather enjoyable day. I love to sleep and sleep I did. I fell asleep within minutes of closing my eyes each of the five times. Apparently, this isn’t normal. Who knew?

Electrodes are the new pink.
Electrodes are the new pink.

As it turns out, perhaps unsurprisingly to you, my sleep addiction is a bona fide disease. The very same one my little man suffers from.  I have narcolepsy. Mine is much less severe than Dylan’s and I don’t have cataplexy or fragmented nighttime sleep but apparently my excessive daytime sleepiness, hypnopompic hallucinations (which I just thought were crazy vivid dreams about tangerine trees and marmalade skies) and MSLT results are enough to diagnose me as a narc. As is too often the case, my diagnosis came 21 years after my symptoms first appeared.  Sadly, it is not uncommon for narcolepsy to go undiagnosed or misdiagnosed for decades in part because the disorder is somewhat of a medical mystery to most doctors. According to a 2010 article in the Journal of Clinical Psychiatry failure rates for properly diagnosing narcolepsy are extremely high among a variety of physicians. Neurologists misdiagnose narcoleptics 45% of the time, general practitioners 78.1% of the time and pediatricians almost 100% of the time. This is precisely why awareness is so crucial.

Since narcolepsy effects just 1 in 500,000 Jews it would be easy to blame Dylan’s narcolepsy on Mr. Bear’s mixed breeding (especially since I blame him for most things) but now with my diagnosis the evidence seems to suggest that my pure breeding is likely to blame. My genetically impaired father is up next for a sleep study. We are all expecting the results to reveal he’s not nearly as funny as he thinks he is.

“You may say I’m a dreamer but I’m not the only one, I hope some day you’ll join us and the world will be as one.”


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