I felt as if I had been transported into an episode of “The Twilight Zone” when the doctor prudently applied one of the twenty four sensors onto my scalp. They were thin and flexible like a cluster of eight foot long headphone cords. “Electrodes” he called them. Everything positioned neatly on the bed, the extensive electrodes flaunted colors of red, green, and blue; they stood out dramatically against the cream walls, dark tan sheets, and washed-out wallpaper plastered with light tan diamond outlines. It replicated a hotel room but this was far from a sanctuary.
For about fifteen minutes I sat stagnant while the doctor bound me to the machines. The only movement came from my legs as they repeatedly overlapped and uncrossed. I would be undergoing a Polysomnogram and Multiple Sleep Latency test. The Polysomnogram assesses electrical brain and nerve activity; the latency test inspects for signs of REM sleep occurring at inopportune times during waking hours. As the doctor continued sifting through my hair to situate more pasty patches on my scalp, a woman knocked on the door and laid a sheet in my lap consisting of questions to be discussed with the doctor: “Recall a time in which you have experienced daytime fatigue.”
…After accomplishing a full nine hours of sleep I was mentally equipped for Off-Roading
before classes. At 2:00 pm, I got into my car to return to class. Invigorated and having had a wonderful morning, I put on some “A Day to Remember” and hopped onto Route 9. As a fog slowly enveloped my head, my singing faltered and I compulsively blinked to hinder the sudden pricking in my eyes. I tightened my muscles in preparation to continue the drive, perceptually encouraging myself. I had gotten enough sleep so I continued driving; I could not be late. I could take care of myself…
During the weeks succeeding that day I would learn to always have a hand on the wheel
in a place where it would begin drifting to the left as my muscles relaxed and I fell asleep. If I were in the fast lane, this would cause my car to veer onto the rumble strips that violently vibrate my car and startle me conscious. Too busy trying to experience my adult life sovereignty, I had failed to admit that I could not actually take care of myself. I reservedly voiced my answer to the doctor,
“Yeah, I’m usually tired during the day but I am almost positive it is just because something is preventing me from getting restful sleep.”
“Well that could very well be a variety of sleep disorders. Narcoleptics fight a daily battle against an urge to sleep in spite of 9 hours of sleep as well as naps.”
Laughing at the waste of time those tests would be and raising my voice I assured him, “I don’t have any of those brain things. I just don’t sleep well and need something to make the sleep restful; it’s that simple.” My brain scrambled to find a logical excuse to back up my comment.
Shuffling my hair back into place as best he could, the doctor worked his way down to my temples, stationing an electrode on each and one underneath my chin. Gluing two more behind my ears, my shoulders constricted at the physical contact. He continued,
“Do you ever have a loss of muscle control or numbing of your extremities?”
…Deep breathes soothed my nerves as I pulled into the unfamiliar driveway on a Monday night. Mrs. Maida opened the door and introduced herself, welcoming me to her home for the
first time. My classmate Nick and I did not have a relationship outside of the classroom but somehow I ended up here to watch “Despicable Me 2.” At the end of the movie I was ready to astound him with my suave conversation skills. Instead, the room distorted for a second and I found myself uncontrollably laughing as he asked if I was okay.
“No,” I stuttered. “I can’t feel my legs.”
I glanced upwards at the corner of the ceiling, holding my stomach and excessively swallowing. My legs betrayed me as they sent a numbing sensation through my calves and into my feet, and then entered into paralysis. I reached out for the counter as they gave out, supporting myself with my tingling yet still functioning hands. My fingers has no feeling as I connected with the counter, I felt as though I were holding a block of ice. My body thought I had fallen asleep, leaving me without control of my muscles.
Somehow amongst the excessive swallowing and tingling that crawled up by back and across my face, I managed a fake smile and tried to laugh it off: “Sorry, I get a bit nervous around guys!”
Excited that the doctor had knowledge of something I had went through, I exclaimed, “Yes! Oh my goodness, yes! I have experienced that!”
“Narcolepsy is often accompanied by Cataplexy, a condition in which intense emotions cause a sudden and involuntary loss of muscle control; the given part of the body goes limp.
And have you ever woke up and felt like you were not breathing?”
“Eh, not really.”
“Do you have frequent adult nightmares?”
I grimaced. “Yes….every night….”
I am laying down for a nap before I must get Patrick, a boy I babysit, off of the bus at 2:45 pm. My alarm sounds but I pay no attention to it. When it goes off again and I try to arise, my arms and legs feel completely anesthetized. I stumble onto the floor, twisting and shrieking as the passing of time brings the feeling back. Everything goes black.
Then I am sleeping again, taking a nap after school and waiting until I have to go get Patrick.
I watch myself wake up in my bed and it continues. Seven times I make it to Patrick’s and am striving to know if I am actually there to pick him up or if I am in dream state. There is no way out; my dream self struggles to know if now this is real. I keep waking up only to discover that I still need to wake up. When I finally am able to knock myself awake, my muscles are deadened. Tears stream down my face but I do not know if out of relief or fear. The hairs are lifted on my arms and everything around me moves too quickly to process. After a few minutes I get a response when I wiggle my fingers and fight through the rest of the day,
terrified of “waking up.”
The doctor nods in recognition as I confess, “Yes. I have nightmares almost every night for as long as I can remember. They’re pretty bad, pretty terrifying, because they are super vivid and I remember them.”
The last nodes are placed: two on my upper chest and a couple on each arm and leg. Two heavy, elastic belts that look like they have bombs strapped on them, are wrapped around my chest and abdomen. I call it the cast iron corset. It supposedly measures the strength of inhales and exhales, but they did not allow much breathing.
A plastic clip bites down on my pointer finger and a screen tracks the oxygen levels in my blood.
“Do you have any concerns confusing dreams with reality?”
It had been not even two weeks since I learned I could not trust myself. Or my mind. Or my memory. Going through the line at Moe’s, Megan listened intently as I told her about a high school friend of ours who was recently arrested for selling a piece of artwork that had his signature on the bottom but was not his. He was an amazing artist, and Megan quickly questioned the story,
“No way. That did not really happen. I did not see anything online.”
“I swear!” I told her. “I will go on Google right now and find what I was reading.”
As I continued to search various phrases in order to find this information about Tyler’s arrest, my stomach turned. Megan already knew what I was going to say, because she could see in my face how afraid I was to admit it:
Rolling my neck and wrinkling my forehead I confirmed, “I guess it never happened…I must have dreamt it.”
I had been telling people this story for weeks.
It was not the first time my dreams became confused with reality.
For the past six years, I believed that I could not get pregnant due to what doctors told me when I had a ovarian cyst removed in the beginning of high school. When Nick found some flaws in my story and urged me to call my doctor, I texted my dad and asked him what the number was for the office that I went to for the sonogram and cyst removal.
“What the hell are you talking about?” he asked.
Panicking, I called my primary care and desperately asked her for the information:
“I do not have anywhere here in your record that you saw a doctor for that purpose, Amberleigh. It’d be in here.”
As I lowered the phone to the table, my gaze unfocused as I slackened my mouth and pretended to have misheard what she said. Six years of coming to terms with the fact that I could not get pregnant ended with the harsh realization that none of it had ever happened, and there were no records to confirm that pregnancy or cysts were ever a problem for me.
I never liked to get into it so I just told the doctor, “Yeah, sometimes the two get confused a bit.”
He began to explain to me how Narcolepsy could have such an effect. A normal night’s sleep has four to six sleep cycles, during which the person goes into NREM, or non-rapid eye movement, and then REM. Because REM involves heightened brain activity and muscle paralysis in order to control your body movement, those woken up during this stage claim to have been in the middle of dreaming. So when someone is always in REM and can enter it within seconds of dozing off, the brain becomes unable to distinguish between a true memory or a dream. As my eyes teared up and widened the doctor asked his last
question, “And on a scale of 1-10, how likely are you to fall asleep while operating a motor vehicle?”
I voiced a slight “hmm…” as I thought of my answer. I was afraid of saying the truth and getting my license revoked.
Leaving the Orthodontist around 11:00 am, just one left turn separated me from the Best Buy where Nick works. Two minutes. A sixth of a mile.
A mental fog sends my brain into a daze as my spine is rendered unworkable, allowing my head to begin tipping forward; I am able to find sanctum in the line of cars coming to a halt
at the intersection. Red lights are a girl’s best friend. My body jerks forward with my car as the horn behind me sent my foot instinctively pressing the gas only to slam on the brake. There was nothing ahead of me but a paved path leading up to a green light. My hand went up waving in apology and I steadied my speed as I began curving for my left turn.
Just in time to see the failure of my attempted left turn, I opened my eyes as I swerved off the road. A sudden coldness filled my core as I clutched my chest on reflex. Angry screams came from my car as it collided into the cement curb, clearing it. One hand aggressively pressed on my chest as the lining of lungs inflamed from stress and my tire popped. Hastily pulling forward enough to turn into the Best Buy parking lot that stands only a tenth of a mile away, I put my car in park and knew I could no longer handle this on my own; the game changes when the lives of others are involved. My breathing steadied as I held back the urge to scream and cry; staring at my surroundings, I saw nothing.
“I would rate myself at probably a 6 or 7.”
The installation of wires was complete. I cumbersomely clambered into bed and slid under the covers as the doctor told me I should be able to sleep comfortably. The machines and cameras were calibrated as they told me: “look to the right,” “look to the left,” “clench your teeth,” and “close your eyes.”
Obediently, my eyes closed.
It has now been six months since I was diagnosed with Narcolepsy: an incurable brain disorder that increasingly worsens over time and ends the possibility of a normal, unmedicated life. A person would have to go 72 hours without sleep in order to experience the fatigue that Narcoleptics “function” under every day.
My test results showed REM (Rapid Eye Movement) beginning within one to five minutes of falling asleep, instead of the expected 90 minutes. We are supposed to then begin dreaming and muscle paralysis within REM. Since I slip right into REM, paralysis and dream-like hallucinations occur constantly, even during a quick daydream during class. Lacking the first four sleep stages the REM narcoleptics enter is not restful, just a place to be imprisoned by vivid nightmares and hypnagogic hallucinations. No matter how much sleep is achieved, the person will never be fully rested.
There is no way to avoid Narcolepsy’s interference in daily life. It is not just exhaustion.
There is a persistent state of mental cloudiness. Lapsing in and out of REM memory becomes subjective. “Trust no one” has a different meaning when it encompasses yourself.
Sometimes I sleepwalk through an entire day. “Microsleeps” describe this automatic behavior that occurs while we are asleep but still performing tasks. Most often I experience it while taking notes or driving. Upon awakening whatever happened during the Microsleep is unrecallable.
I am learning to get used to responses such as “oh, I am tired a lot! Maybe I have narcolepsy,” or “Isn’t that what those dogs on YouTube that fall asleep while they are running have? That shit is so funny.” It was funny when I fell asleep for the entirety of a two hour tattoo. It is not so funny when a sleep attack occurs on the highway, or while making a turn at an intersection. People tell me to be thankful that I am not “a single mother going to school full time,” because then I would know what tired was. Heat flushes through my body and I grind my teeth, keeping silent; in my mind, I sift through memory after memory to challenge their accusations.
Narcoleptics are not just tired, and they cannot just go to sleep to experience rejuvenation. We are imprisoned by our minds. Every hour we output all of our energy trying desperately just to stay awake, that is all we can do.
I realized that doctors do not focus on it because it is too rare, and others think it is a joke, that we should just go take a nap. Since everyone else’s eyes are always closed to the disorder, I must always keep mine open, even if that means living in a daydream.