Chapter Six: Building the Glass House

As they say, hindsight is 20/20 and I now see that my college years were the years Narcolepsy knocked the hardest on the proverbial closet door.

I struggled tremendously during this time, regularly feeling totally beaten down physically and emotionally. I lived in confusion, and struggled every day.

I don't remember much of my college days if feels as though I moved through them in a fog—but not for the typical drunken reasons—I was simply, tired.

I occasionally wonder, with regret, how much better my grades would've been had the diagnosis came before college. I'd always been an honors student, but during college I struggled like never before, but was unable to see that the cause of my struggle wasn't just my sleepiness.

Some people compare difficult narcolepsy days to drowning, but that wasn't the case for me. Drowning implies that there is a sense of panicked urgency, even fear. Perhaps if I had that experience I'd have sought treatment much sooner.

In my experiences, tough days were like being lost in a maze. If you're a Harry Potter fanatic like myself, the Tri-Wizard maze may come to mind. Overgrown, filled with fog, easy to get lost in, and occasionally things jump out and try to kill you. Somehow you manage to survive, only to stumble away in a fog.

My  whole world confused me. I felt that I was lost and wondering, trying simply to stay awake and survive. Employers, friends, family, and professors would occasionally come at me out of the haze, demanding to know why I was late, where my project was, or why I had been MIA or grumpy recently.

Everything in my life seemed beyond my control and I rarely felt true success in anything. And yet, I continued on blindly.

There were a few reasons for my blindness.

First, I had begun working at the aforementioned fast food restaurant and mastered the 'graveyard' shift, typically not getting off until just before dawn. For these reasons my sleep schedule was already a little bizarre, and often changed each semester based on my class schedule. It wasn't uncommon for me to work from 6 p.m. to 4 a.m., sleep in my car in the parking lot of the university until my early class, go back to sleep in my car in between my morning and afternoon class, and then go home, sleep for a few hours, and prepare for work again. I almost never slept for eight hours at one time but had I taken a step back and counted the individual hours I slept in a day I'd have realized it often totaled over 10 or 12.

These naps were often not restful either—which I usually chalked up to the strange locations I slept in. (A car in the middle of the Florida heat isn't fun!) Little did I know, a major narcolepsy symptom is that naps are often not helpful—leaving one more tired afterwards.

To top it off, I also consumed MASSIVE amounts of caffeine. My daily coffee intake alone could put the Gilmore Girls to shame, stopping for Frappes and black coffee at McDonalds, or grabbing the free coffee the school's library offered...multiple times. You read that right, I typically stopped at McDonalds for coffee 2-3 times a day AND grabbed free coffee at the library 3-4 times a day!

In between coffee, I drank tea, and before work at Taco Bell I grabbed a pack (yes pack, not can!) of Red Bull. An eight-hour shift meant three cans, a ten-hour shift was four cans.

For some reason, I wasn't aware of how massive my caffeine intake truly was. I can make excuses, but I was essentially playing ostrich: sticking my head in the sand as I tried to navigate my maze.

There were a few important factors, well, excuses, at play here. First of all, I justified the free library coffee and the energy drinks by claiming that they were small. I simply didn't count the tea at all, (everyone in the south drinks iced tea, with all meals), and coffee was just a regular part of life.

It also didn't help that because of my crazy sleep schedule, I often counted my days incorrectly. Because I went to sleep in between work and school, or in between classes, I didn't think of myself as having consumed all that I did in one day--the day was segmented by sleep. 

This schedule and caffeine caught up with me on more than one occasion.

Morning classes were the worst and I regularly overslept and missed class, or showed up physically but not quite mentally. My grades in all of these classes suffered and more than a few teachers brought my tardiness into question. Seriously threatening me with failure.

Author's Note: for those of you who have been diagnosed with narcolepsy and are trying to cope with it. Speak to someone at your school or work; exceptions can be made for you because of you condition under ADA or FMLA. There are options, research your rights! (I wish I had!)

I also intentionally scheduled my classes and work hours so that there was at least one day every week for me to sleep. On my "sleep day" (which most of my classmates reserved for homework), I would literally sleep almost all of 24 hours in an effort to 'catch up' on the sleep I'd missed for the week.

There was some irony in this, seeing as how I often slept for more than the required of eight hours a day and didn't truly need to 'catch up', however having the opportunity for an uninterrupted sleep, that lasted several hours, was priceless. On weeks I had to miss my sleep day, it took me an eternity to catch up and get back into the swing of things.

My ability to wake up at the sound of my alarm was also decreasing.

I'd always been a heavy sleeper, and while in high school my family often resorted to bizarre, and often unwanted, methods to wake me up. (Frozen marbles anyone?)

Now, in college, my schedule meant I often had to get myself up and I couldn't find an alarm that dumped a gallon of water on me, threw ice cubes in bed, or could activate a foghorn. (yes, my family had done all of these things).

I tried several apps on my phone that promised to be super loud, or could only be set to 'snooze' by doing a certain number of math problems, but the biggest issue was that I simply never heard them: sleeping through them as if they weren't even on. Even the best alarms only remained effective for a few weeks when they'd need to be swapped out in the rotation.

The propensity to fall asleep in strange places increased as well—likely a result of choosing to sleep in my car so often. My mom has photos of me asleep at Universal Studios, and I had a terrible habit of accidentally falling asleep while sitting atop 'the throne' at work. More than once I realized I'd dozed in the shower or while driving, and quick naps while standing wasn't  out of the ordinary for me.

Falling asleep while driving became a very real concern for me, particularly during my senior year when this symptom was at it's worst.

I'd developed, and honed what I called 'techniques' to keep myself awake. Looking back I realized that these "techniques" were actually coping skills, and not ones I'd recommend. (SERIOUSLY. This is one of those "don't try this at home" warnings you need to listen to!)

For example, I avoided going the restroom before getting behind the wheel, finding that a full bladder was an excellent way to stay awake. I almost always had something to eat or drink with me as well, keeping my mouth moving, kept me awake. Food that was difficult to eat—like gum of sunflower seeds were ideal. Sometimes I also talked on the phone in addition to the eating and drinking. The brainpower conversation required kept me alert better than signing to the radio (that is too automatic of a behavior). In the winter I'd roll windows down, allowing the icy wind to keep me focused.

The most dangerous technique, and the one I'd seriously warn against, was my 'secret weapon' which I only pulled out when "absolutely necessary"...so... about twice a week in my case.

I'd pull through the McDonald's drive through and order a drink that was the opposite temperature of the weather (So if it was cold outside I got a hot coffee or latte and if it was summer I ordered an iced tea or frappe) and asked them to fill it to the brim. In my car I'd remove the lid, and hold it in my hand while driving. When I fell asleep behind the wheel, the cup would tip, pouring some of the drink into my lap and startling me awake. On these days, I usually managed to spill my drink into my lap about three times before getting home.

Finally, and this really should've been my go-to technique, I'd pull over into a relatively safe looking parking lot, text my location to a friend (just in case), and nap.

The fact that I needed these to stay alert while operating a moving vehicle, and the fact that they often didn't work, are terrifying at best, yet still not cause enough for me to seek treatment.

In my head, the excuses still outweighed the symptoms, and since my college job was only temporary, I felt that the 'end was in sight' and I only needed to get through a couple of months before I graduated and life could return to a more normal schedule.

This senior year of college would go down in history as one of the most difficult of my life.

Almost an exact year after my college graduation, I'd discover that the excuses I'd made for my sleeping disorder, my bizarre justifications, were all part of an elaborate, but fragile, glass house I'd meticulously built around myself.

A glass house that would shatter very soon, changing my life for the better, forever.