The Monster In The Closet
An open letter to people with narcolepsy
About 6 months ago I started taking a drug to treat my narcolepsy. I’ve written about my condition before, but for those of you who don’t know, here are the basics:
Narcolepsy doesn’t simply mean that at random moments you uncontrollably fall asleep. Some narcoleptics have that problem, but not all of us. The thing all narcoleptics have in common is that we can’t regulate the chemicals in our brain that control waking and sleeping.
The most significant consequence of this is the inability to sustain deep sleep. We get very little rest throughout our lives and live with a constant sleep deficit. If you want to know what it feels like stay awake for 48-72 hours and try to go about your day. It sucks.
For the past 6 months, twice a night I take a drug that shuts me off for 3 to 4 hours. For the first time in 42 years I get sustained deep sleep. The change to my quality of life is difficult to exaggerate. I imagine this must be what it feels like to be born deaf, then have a procedure which allows you to hear for the first time. I don’t want to minimize the absence of a sense, but it feels that dramatic to me.
Six months ago time had no distinctive breaks for me. I went to bed, slept poorly, woke up, and life felt like one never-ending day. I had trouble concentrating and managing stress if a task or event took place over an extended period of time. Sometimes my knees or elbows buckled for no reason. Sometimes the urge to sleep was so strong I didn’t know how I’d keep going.
I hacked it for 42 years. I was always employed, maintained relationships, finished marathons, graduated from college, but at regular intervals the basic workings of a day could blindside me and make the simplest task impossible. My brain was not consistently or predictably a team player. Sometimes we did just fine, and others my brain said, “Whoo, I’m beat! I’m checking out for a while. Good luck buddy.”
That doesn’t happen anymore.
These days I wake up 7 to 8 hours after my first dose. I always feel refreshed. The day always feels distinct from the one before. Because my deep sleep is induced, I can actually schedule within minutes when I want to fall asleep and know that no fewer than 7 and no more than 8 hours later I will wake up, fully alert. My emotional responses to things make more sense to me and are less extreme.
In many ways my life before all this seems surreal. I feel like the same person. I have the same attachments and interests. It’s clear though I was living in an altered state that distorted my experiences. It would be sort of like being born a little bit drunk, learning about the world always a little bit drunk, and then suddenly you’re sober for the first time. The world is the same, but also very different.
The first few months of this I was ecstatic. Sleep was a new toy and the energy and positive shift in mood kept me in a state of bliss about the change. As I get used to my new life though, it’s impossible not to imagine how drastically different things would have been if I’d had quality sleep my whole life. Life has challenges now, for sure, but nothing is so debilitating that my body involuntarily shuts down.
Regret Is Forever Without Love
It came out of some early writing and I clung to it over the years because I made what felt like an extraordinary number of mistakes. I needed an overly-positive view of mistakes so I could continue to function and be happy. Now that I have a greater capacity to avoid mistakes, I’m finding myself much less forgiving of the ones I make.
It isn’t all bad though, to suddenly have a life with clear and distinctive events and periods to point to and say, “I wouldn’t do that again.” Anyway, I’ll continue to explore the new world I live in, strange but familiar.
An open letter to people with narcolepsy
As long as healthcare continues to be a business, people will never be as important as the bottom line
no, it doesn’t mean you just involuntarily fall asleep