I’ll let you in on a secret: narcoleptics can’t wake up in the morning.
I don’t know why this is, but it’s true — nothing wakes up a narcoleptic.
People with narcolepsy can turn off alarm clocks in their sleep — even the puzzle ones! — and can hold conversations while sleeping. Their eyes might be open, and they might be responsive, but the minute you leave the room, they are going to roll over as if they were never interrupted, because in a way, they weren’t.
Let me tell you, it’s humiliating to be unable to master this very basic life skill. How can you hold down a job if you’re always late because you oversleep? How can you hope to live independently when the only reliable way to wake you up is to have someone force-feed you your medications and drag you out of bed?
Since I’m currently living in Spain, I’ve had to figure out a way to wake up on my own. I’ve established a routine that works a good amount of the time; so, here is what I have to do to wake up in the morning.
All the gadgets I use to wake up, in one nifty pic!
I have a 1100 lumen, 7000 Kelvin lamp — in regular-people terms, this means the light is “really freaking bright and really freaking harsh” — hooked up to a timer, and before going to bed, I program the timer to turn the light on at 6:30am. I keep the lamp as close to my face as physically possible, and when it turns on in the morning, I usually wake up a little bit from the pain the light causes.
Next, I have my Sonic Boom alarm clock, which is a horrifically loud alarm made for deaf people. It also has a vibrate function, so you can put it under your mattress and it will shake your bed until you wake up. I put it inside my pillow, right under my head, so when it goes off at 7:30, it literally shakes me awake. This is my cue to roll over and take a double dose of my stimulant medication, which I set out the night before next to my lamp on the nightstand.
After I take my meds, the alarm on my phone — which I’ve placed across the room — begins to go off, every five minutes, until the stimulants kick in enough for me to be able to drag myself across the room and turn off the phone alarms. Usually this takes about half an hour, bringing us to 8:00.
At this point, my body feels like it’s been hit by a bus, and I’m usually too sore and heavy-feeling to walk, so I play Candy Crush on my phone for another half hour — I consider it a victory if I can do this while sitting up — until my body wakes up enough that I can go to the kitchen and have a bowl of cereal and three huge glasses of water, at around 8.30. If I don’t eat at this point, the stimulants will burn through my system too quickly, and I will fall back asleep before 9:00.
I give myself a good hour to get ready, because chances are I will need all of that time. I move slooowly in the morning, and will inadvertently fall asleep during my morning routine, ‘waking up’ to find myself staring blankly at nothing. I need to be at school by 10:00 on most days, and with this routine, I am usually only 5 − 15 minutes late, which in narcolepsy time is not late at all.
Most days, this routine works pretty well. It’s actually empowering when everything goes right — It feels like, “Yes, I’m in control, I decide what happens and when.”
I occasionally sleep through all my alarms, though, and there have been times when I’ve fallen asleep in the space between turning off the Sonic Boom and reaching for my meds, which is super depressing. It’s a horrible feeling to keep waking up, seeing your meds within arm’s reach, knowing that all you have to do to start living is grab them and swallow them, but you fall asleep again before that can happen. Sometimes, this will happen for hours.
Oversleeping is generally an indicator of laziness, or a lack of discipline, and it can be difficult to understand that for narcoleptics, getting out of bed is not a question of willpower — we have to work much, much harder than everybody else just to wake up.