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Coming Out of the Shadows to Talk About Narcolepsy

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6:30 a.m. I have to get up this morning, no matter what. I have a doctor’s appointment, the kind that only comes around once every six months. I can’t miss it. My husband urges me to get on my feet and go take my morning pills, including a stimulant that should help me stay awake. I get back into bed and wait for it to take effect. I’m asleep again in seconds. My husband turns on the lights, the television, and the stereo, in the hopes that the discordant sounds will help penetrate my sleep and get me going. It works; I only sleep for another hour before waking up fully and getting ready. When I get home a few hours later, I go straight to bed and sleep for another four hours.

The next morning, the same routine. After my husband leaves, I manage to turn off the TV and stereo. I feel desperate and guilty in the few moments before I fall asleep. It will be 1 p.m. before I wake up this time.

We are visiting family during the holidays. I slept well overnight and felt rested in the morning. At 9 a.m., my eyes begin to feel like they’re shaking in their sockets.  My field of vision gets jumpy.  I feel like this is Rapid Eye Movement coming on, even though I’m awake and aware. My sleep physician says other narcoleptics report this as well. I go and nap in another room, missing out on time with my family.

It’s a beautiful Saturday. I wake up and take my meds. (All of these sleep attacks take place despite strong medication.) By 11 a.m., I go back to bed and sleep until 4 p.m. I’m vaguely aware of my husband moving around, folding laundry, leaving to get groceries, all the things I should be helping with.

I was diagnosed with narcolepsy in 2005 at age 32. My primary care physician had me fill out the Epworth Sleepiness Scale. It came back as “severe,” but that wasn’t a surprise. Of course I was tired — I was working 14-16 hours a day at a new job. My doctor recommended I go for a sleep study. I thought it would be interesting. The results were very interesting, and they would change my life forever.

I will never forget the first line of the report: “Patient fell into REM sleep while sitting up, reading, with the light on.”  I remember sitting up and reading, but it was hard to believe I had actually fallen asleep. Not only had I fallen asleep, I had fallen directly into REM sleep and was dreaming for those few moments before I woke up and continued reading. To me, nothing had happened. My brain was subject to a different agenda.

Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles. For me, the need to sleep is often overwhelming. I have to look out for brief “micro-sleep” periods, when my brain falls asleep even though I’m sitting or standing. Narcolepsy is often accompanied by cataplexy, when the muscles in the body can suddenly relax completely. I am fortunate — my cataplexy is relatively mild. Sometimes my head will fall forward suddenly, or my knees will buckle, but I haven’t fallen down completely.

Narcolepsy is chronic, and though it can be managed, there is no cure. The majority of people see narcolepsy only as portrayed in the movies: as a mechanism for laughs. The narcoleptic character usually falls asleep suddenly and dramatically, often falling down into their food or some other ridiculous circumstance. I didn’t know any differently.  I wasn’t falling down; I hadn’t ever noticed falling asleep. Yes, I took naps all the time, and had since college, but wasn’t that a normal way of dealing with a very busy life?

That pattern would continue through my 20s. I taught middle and high school, and kept a pillow in my office so I could nap on my desk during lunch and my free period. Then I’d go home and sleep for a few more hours until evening. By the time I made it to graduate school, it was just a regular part of the day.

Today is what I call a “bright” day. I woke up without any help. The meds are working. I have wanted to write this essay for a while; today, I have the willpower to get the laptop and make it happen.

I don’t think I’ll ever get over the shock of my initial diagnosis. It still surprises me. For several years afterwards, I was still able to live a fairly normal life. I worked my way up to a senior position in education, and I loved my job.  But in 2013, a very slow slide began. It became harder to wake up, even with increases in medication. I began to miss more days at work, leaving my team to fend for themselves. I began forgetting things I promised to do. I had more trouble following along in meetings. I had been able to travel internationally to present at conferences, which was a joy. In 2014, the fatigue and need to sleep made it impossible.

In 2015, I could no longer ignore the obvious, and began the process for disability. Over two years later, and it’s still ongoing. I miss my job, I miss who I was. I’m beginning to be even more aware of the hours I miss, as they add up into days, which add up into weeks. It’s said that if you sleep eight hours a night on average, by the time you are 75 years old, you’ll have spent about 25 years of that asleep.

I don’t want to know what my total will be.

Today is a bright day. My cats are napping, but I’m not. I have a wonderful, supportive family. My husband is the best partner I could ever hope for, and he’s endlessly understanding and helpful. I have amazing friends who understand. There’s a new medication coming out later this year, and I hope I’ll be able to try it.

Narcolepsy is a disease that lives in the shadows. Today I will sit in the sun and blue sky.

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Getty image by Marjan Apostolovic.

Originally published: February 12, 2018
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