By Savannah Hughes
This is an open letter to sick kids, to college students living with chronic illness and disabilities. For the number of times we have to say “I can’t do that,” I want you to know that you are not alone. We are together through every medication, every modification, and every accommodation. We hear over and over again that we should not let ourselves be defined by our diagnosis, yet every step we take is constrained by our health. Sometimes, we are our diagnosis, but we are also so much more.
My illness has to do with sleep. Sleep had always been problematic for me. Even as a baby, I slept more than my brother. As I grew up, this was a big source of tension between my parents and me. I wouldn’t want to wake up and sometimes, I couldn’t. I was punished for falling asleep or refusing to wake up. I was yelled at and not allowed to spend time with friends. I remember many fights with my parents before I had the language to express what I was going through.
Eventually, my parents saw that there was probably something wrong with me physically and I was not simply disobedient hell spawn when it came to rest.
Cue eight years of allergy, hormonal, thyroid and many more tests that inevitably came up with one result: nothing. I was poked and prodded, hooked up to machines, had my blood drawn countless times for nothing.
I was devastated with every negative result. I’ve lost count of the number of specialists and doctors I’ve seen. Eventually I lost hope of being diagnosed with anything. Maybe my parents were right, and I was just lazy. Maybe that’s all I would ever be.
I would tell my doctor every time that I was tired and thought something was wrong, but they wrote me off as “just being a teenager” or “sleeping too much” or “sleeping too little.” Sometimes I wondered if doctors actually heard what was coming out of their mouths.
School was all but impossible. My mom started homeschooling me and my brother when we were very young, but no amount of one on one teaching could erase my exhaustion. Still, my type A personality along with a need to prove something to the world kept my grades up, even at the cost of my physical and mental health.
Last year, as I was about to start my first semester in community college, I had all but given up. Finally, at a checkup, my mom and I demanded a referral to a sleep specialist. I figured this would just be another dead end, but I was out of options. If there was actually something wrong with me, it would show up in a sleep study.
For 20 hours I was hooked up to dozens of electrodes, a breathing monitor, and was watched and listened to as I slept. It was probably the worst night of sleep I’d ever had. Wires were stuck to my face in a half a dozen places. I had a belt strapped around my chest and tubes up my nose.
Even worse, when I couldn’t sleep, the technicians would come and check on me or beep through the intercom to see if I was okay. I was stuck in a room with mediocre Wi-Fi and my every move, sound and breath was monitored.
Two weeks later, I was shocked by what my sleep specialist told me. I had narcolepsy. I have narcolepsy. I was about as ill-informed about the condition as anyone else. My only impression of narcolepsy was the Hollywood portrayal of “suddenly passing out for no reason.” I had never fallen asleep standing up. I had never collapsed into slumber spontaneously.
But, sleep studies don’t lie. I have narcolepsy.
Over the next year, I learned more about this mysterious condition. Narcolepsy is caused by a deficiency in a protein in my brain. This protein regulates sleep and wake cycles. Essentially, my brain thinks I’m awake when I’m asleep and thinks I’m asleep when I’m awake. Narcolepsy always manifests as extreme sleepiness but it has more subtle symptoms including memory difficulties, trouble focusing, muscle weakness, mood swings and a weakened immune system.
The average narcoleptic is sleep deprived the equivalent of 48 hours. Imagine trying to do homework after pulling two all-nighters. It’s nearly impossible. Reading was the worst, sitting still and trying to focus on other people’s thoughts is sleep inducing.
I assumed I had dyslexia because my handwriting and spelling was erratic at best, but I really just had a bad memory and would drift off while writing and lose focus.
Math simply didn’t compute in my sleep-deprived brain and I buried myself in the arts to compensate. My drawings were never graded, my paintings never criticized, and I felt at peace.
Now, almost exactly a year later, I still have narcolepsy. There is no cure and the treatments are mediocre at best. I manage my condition with medication and lifestyle changes but I am still sick, and I always will be.
In spite of all that, I am an honors student, an artist, a writer and a leader. Even in high school, before I was diagnosed, I was a successful speaker and debater. I have come far, and I have far to go but I will fight for every inch of progress I make. I’m learning to live with and be proud of my narcoleptic self.