When We Feel Embarrassed by Someone with Autism, We are the Embarrassing Ones

Despite my childhood trauma with “First Communions,” today I drove an hour (which in itself is an exciting story for another time) to Gales Ferry, CT. In Gales Ferry is a church where Patrick received his First Communion. Patrick is a twelve year old boy I babysat for a little over a year. He loves trucks, sand, firecracker popsicles, mash ‘ems, and has autism.

Going up to receive First Communion in front of an entire congregation and your family, after trying to memorize what you are supposed to say and do at what time, is a bit intimidating for any 12 year old. For someone with autism, it can be downright terrifying. So was the case as I walked over to the pew where Patrick sat with his mom, Dawn, putting his head down and firmly stating that he was not going up there.

In front of us sat Patrick’s uncle and his family, and his grandmother and godmother who are the ones who actually attend this church. Patrick continued asking questions such as “Who is taking me up” and “Am I getting a present,” while still declaring he was not getting up. The godmother looked him straight in the eyes and said, “Listen Patrick. I have worked too hard and long with you on this for you to mess it up. You are going up there.” Proceeding, she ran through when to say “Amen” and when to walk up and sit down.
I was offended. She worked hard? Not only does autism cause Patrick to struggle with sensory deprivation issues, tactile problems, and auditory issues, but Patrick is also at the age of puberty. That means for one with autism, the anxiety and anger are far beyond what one without the disability must deal with. Temple Grandin of Colorado State University described anxiety for someone with autism by saying, “Just imagine how you felt when you did something really anxiety provoking, such as your first public speaking engagement. Now just imagine if you felt that way most of the time for no reason.”

We may be sitting there, worried about how we will look if this child does not do what they are supposed to… but they are experiencing something internally that we cannot even understand. Grandin continues, “The ‘nerves’ were almost like hypersensitivity rather than anxiety. It was like my brain was running at 200 miles an hour, instead of 60 miles an hour.”
When the time came, they dragged Patrick out of the pew as he shouted, “No! I am not going up!”

As they were pulling him to the front, he kicked and yelled the F—word, causing hearts, mine included, to stop. I looked around to see the expressions on stranger’s faces. Moments later he was directly in front of the priest and took the bread, shouting, “Amen! Do I get a present now?”
His mom walked with her head lowered back to the pew, tearing up, as the godmother held him as they took a photo of him with the priest and the grandmother walked back to the pews shaking her head. “Well, that was a piece of cake, wasn’t it!?” She said it with a sarcastic and judgmental tone.

Yes. It was.

It was a piece of cake compared to what that boy must deal with on a daily basis. We feel inconvenienced that he said a bad word and it is embarrassing. Maybe for a moment we should think about the situation he is in that makes him have to react that way! Unable to communicate effectively and suffering from speech deficiencies, Grandin described the thought process during outbursts like the one we saw from Patrick: “Often I would logically think to myself, ‘I am going to scream because I want to tell somebody I don’t want to do something.’”
This was not Patrick’s church. It was not something he wanted to do, and he was surrounded by people he had hardly ever seen before. On top of that, he had just been told that he better not mess this up. Sorry— but I think some of us might have even let that word slip if we had been in that same situation.
As he sat back down, Patrick looked at me as his eyes lit up and his smile widened, exclaiming, “Hi Amberleigh! Thank you for coming!”
A few minutes prior to the whole “First Communion,” he laid his head on his mother’s chest and said to her, “You are the best mom in the entire world.”
Later in the night, I would hear him say “thank you” to three other people for coming and ask two people, “Are you okay?” after they coughed or sneezed.
From what I saw, the way those of us without autism behaved tonight— feeling that our embarrassment and feelings of inconvenience were more important than someone’s comfort or sensitivity to a disability, judging other’s when we cannot even imagine being in their shoes— was what was actually disconcerting, actually disgraceful.

Patrick put on his tux, his suspenders and his tie, received his First Communion, and never once focused on what others were thinking of him— he decided instead to tell us “thank you for coming” or ask “are you okay” whenever he thought someone might not be. I think that is far more than what we can say about other children his age. Instead of being ashamed, we need to focus on these traits that are so rare these days yet so necessary. I could not be more proud to have everyone know that I was there for him, the boy who yelled and didn’t want to go up, yes, but the boy with more heart and love than most adults that I know.

Works Cited
Grandin, Temple. “An Inside View of Autism.” Indiana Resource Center for Autism. Indiana Resource Center for Autism, n.d. Web.

Sleep or Shower

(written November 15, 2015)

In 8 days I am turning 21, and I have never felt more imprisoned, dependent, or incapable of taking care of myself than I do right now.
Tonight I stayed in the shower for longer than normal, because I knew that as long as I was standing underneath the running water, I would not be able to fall asleep. In fact, that is the only reason I turned on the shower to begin with.
You would think that having Narcolepsy, doctors and pharmacists would recognize a serious need for medication, at the time that you requested it. Unfortunately, that is not the case. Long story short, I am now on my second day without my prescriptions and hardly able to distinguish wakefulness from deep sleep, let alone stay awake long enough to function.
Midterms are coming up soon so I try to study and outline essays in preparation, but before I know it, I am opening my eyes, stretching my stiff and sweaty body, and mumbling under my breath to myself in anger as I notice that four hours has passed since I sat down to study. I only have a few moments to beat myself up over it, because my mind quickly lapses back into REM, and I am once again rendered useless.
This happens for days. For days I wake up, not remembering falling asleep, and knowing I have many things to get done. If no one is around to wake me up, kind of like a sleep accountability partner, I will lapse in and out of REM for multiple days. I have just slept for 12 hours and after a few minutes of wakefulness, fell back asleep for another 6, and then another 7. In the blink of an eye, I have lost an entire day. This is why when I finally open my eyes again, I sprint to the tub and immerse myself underneath the stream of hot water. Realizing what I am having to do, how desperate I am to ensure just an hour of staying awake, I slide down the back of the shower wall onto the floor and cry.

I went to a strip club

just a jesus follower

strip clubA while back I was asked by a group of pastor’s wives to go with them to strip clubs.

That sentence alone sounds strange. But hang with me.

At first I was a little hesitant. And not for reasons you might think.

I love people. Especially ones who are broken; it’s part of my calling. But, given what I’ve walked through, I know how fragile broken people can be.

And I know how insensitive the church can be.

And I was uneasy.

But, these weren’t just any pastors wives.

They had a vision.

One that longed to love on women that society had thrown aside.

It reminded me a lot of Jesus.

So, I jumped on it.

Their plan was to visit these clubs once a month to deliver a meal and gift baskets. I joined them the first night and I’ll be honest, I had NO IDEA what to expect.

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Only 300 Milligrams Worth of Pills/Drugs Permitted on School Desks

I am a firm believer in the saying “in learning you will teach, and in teaching you will learn.” Taking my teaching role very seriously, I hold professors to a certain expectation and create a theoretical syllabus in my heads that they must uphold. Most students do this; we simply expect them to follow their own rules that they have laid out for us. A particular syllabus given to me by a “Professor Chillings” boasted only one behavioral expectation: “Students must attend all classes and complete every reading on the syllabus in a timely fashion. In each class they must engage with the reading through active participation, asking and responding to questions, spearheading discussions, and making claims that demonstrate forethought.”

Diving into 18th century history on a Tuesday afternoon, Dr. Chillings was off to a good start as she “spearheaded discussion.” However, right as Charles II was about to behead the skeletons of the men who had taken part in the beheading of his father, an unfamiliar girl with long blonde hair half knocked, half opened the door of the classroom. While attempting to look at Professor Chillings’ face as opposed to her shirt which revealed a dire need for a bra, the girl muttered: “Uhm, hi. My name is Emily. Sarah is in the bathroom and she is not feeling well. She wanted me to come get her stuff from this classroom. I think she is going to go to the hospital.”

Abandoning her usually dull voice, Chillings produced a novel vocal expression as she spoke in an astonished, monotone manner: “What! Is she okay? What is wrong with her? Should I go in there and sit on the floor with her?” Emily quickly reassured that Sarah was okay for now but had just recently undergone surgery and was sitting on the floor crying from pain…

“Oh my goodness. This has never happened to me. I’m not qualified for this. What do I do? Does anyone know what to do? Who do I call?”

Processing her question, I realized that most expectations cannot be created until experiencing a teacher/student doing something disgusting or disappointing, irritating, or simply immature and embarrassing. So my internal syllabus had a long way to go and many teachers to critique. This particular day, additions to the syllabus occurred quickly. Out of sheer shock at the senselessness of the question asked by Professor Chillings, a rule was added: “At the start of the semester, the following must be memorized, understood, and engrained in your memory: ‘In the case of an emergency, please hang up and call 9-1-1’”.

A shy girl in the back corner of the room stared incredulously at the professor, while two more verbose girls near the door shielded their laughs and gossiping mouths with their folders.

Emily, now regretting her Good Samaritan inclination to help the girl in the bathroom, shook her head unknowingly while not-so-nonchalantly backing out of the room. Oh how badly I wanted to be Emily at that moment and watch this classroom fade from my theoretical rearview mirror…

Instead, I witness a full-grown, refined woman panicking and overreacting, while still managing to keep an expressionless face and pace within just the four foot radius surrounding her isolated desk in the front of the room. Like one would ask someone to repeat their coffee order, she again asked what number to call in an emergency…I chimed in, “uhm…9-1-1?” Perhaps there is such a thing as a thoughtless question. Does that still count as showing active participation and asking questions?

Fumbling with her cell phone frantically and battling typos while the rest of her body stood straight, Dr. Chillings reached the front desk of the CCSU campus police. That is a “minus” for responding to questions and statements by classmates, as the CCSU Campus Police was not 9-1-1.  While she informed the police officer of the container of pills Sarah kept on her desk, it occurred to me that Dr. Chillings had to have thought to herself at one point that it was odd for a student to have a large quantity of pills out in the open. I put myself in Dr. Chillings’ mind: “Maybe I should say something? No that is not in my job description”. Addition number #3 to the my syllabus: “Each person is permitted to have no more than 300 milligrams worth of pills/drugs on his or her desk at any given time.”

Nervous eyes fell on each of us as Dr. Chillings anxiously scanned the room and regrettably informed the man that she did not know how to answer all of his questions because- you guessed it– she was not qualified. Clearly, Dr. Chillings had not come to class prepared and with all necessary readings completed; I am sure that each student’s hypothetical syllabus for their professors has the “Emergency Preparedness Brochure” as the first required reading. What had been relayed from Emily to Dr. Chillings as a girl in pain on the floor was relayed from Dr. Chillings to the campus police as “She’s on the floor. I think she is having a heart attack or a seizure or something. I think it’s a seizure…”

What!? Lady! Are you even aware of anything going on around you!? You cannot just scramble together your theories as you go along! Where is your textual evidence!? Close reading was a course objective, so I marked her down instantly; there is no possible way to back up the deriving of that meaning, not everything is up to interpretation.

Classmates began spitting out corrections, assuring that it is not a seizure but pain from a recent surgery; Chillings would have none of it. As students, we were engaged in active participation and “making claims that demonstrate forethought”; we offered a logical answer but to no avail. Correct me if I am wrong, but I would not call a seizure diagnoses of a college girl crying on a bathroom floor a “claim that demonstrates forethought.”

Questions rapid fired from Chillings’ mouth, from wondering how the men were going to get up the stairs to whether or not she should sit on the bathroom floor.

I’m no genius, but my guess is that they are going to use their legs to walk up the stairs and we already know you are not qualified to go sit on that bathroom floor. For goodness sake- this is 300-level class.

I voiced out loud that the bathroom idea would probably worsen the situation, and voiced quietly that asking the same senseless question multiple times does not count as continuing to ask thoughtful questions. The next question that came out debated whether or not we should cancel the remainder of the class because of the situation. I guess she no longer felt that “students must attend all classes.” Hopeful expressions were shared as the dreadful three hour class could very well end two hours early. The sound of sirens suddenly filled the classroom. Dr. Chillings’ eyes widened as she asked if they were for us. How was I supposed to know? I already told her the number to call in case of an emergency, and she had failed to comply…Participation grade for me: 100%. Participation grade for Dr. Chillings: N/A.

Verbalizing a mental pros and cons list, Chillings told us her supposedly final decision: “I really would cancel class to let everyone recuperate and relax, but we can’t. We only meet once a week and I already cancelled last week’s class because it was Yom Kippur and I had to do all of my prayers and shit.”

Oh! Why didn’t you say so!? It would be a travesty to miss something that clearly holds such a crucial place in your heart.

Alone, her reasoning seems absurd and a bit misconstrued; put into context, it becomes downright preposterous. A girl who had been paying close attention bent over to her classmate and asked for clarification on what the teacher had just said. Half of the class assumed that they heard wrong and were searching for correction, while the other joined my reaction; I was laughing with my head in my hands as my face turned bright red and my mind processed the farcicality of her statement. I made a mental note to explain my “absence policy”: “Class may not be missed for any events or situations that involve ‘shit’; this applies to both the shit that describes an annoying or worthless person, and the feces and excrements from the human and/or animal body.”

The phone rang and Chillings confidently answered,

“Her name? I don’t know. No, I don’t have that either. Okay, yes. Thanks.”

She turned to us, “does anyone know her name? They want her blue chip ID number, but when I was devoting all of my students’ ID numbers to memory last night with all of the free time I have, I must have skipped hers.”

Is that sarcasm…? This must be what the syllabus meant when it confirmed that within this course we will witness “the emergence of a distinct species of satire.” Whether it be the two girls holding back laughs, the two looking at Chillings wide eyed and opened mouth, or the few that were laughing out loud, I think we were all on the same page; those that were laughing were certainly not laughing with her.

As the police called for the final time to inform that Sarah was currently in the ambulance and on her way to the hospital, a dumbfounded expression crossed Chillings’ face and commanded the attention of every student in the room for the first time this semester. They had not found the student in the system, but Dr. Chillings was just focused on knowing if Sarah was in proper care (and out of hers). She sat back down into her seat and prepared to get back on course. In remembrance of Dr. Chillings’ satirical comment to the police, I added “Bluechip IDs no longer have to be memorized, a class list will be sent out” to my mental syllabus and stared at Chillings. I was astounded by her inability to handle the situation but also curious as to why she responded to a tense situation with inappropriate and snarky comments right in front of the entire class. My question was answered as I glanced down to the top of her syllabus and read that students will witness “departure from and reinvention of traditional norms.”  I added that requirement to my own syllabus, and Dr. Chillings received an “unsatisfactory”, having fulfilled only this one prerequisite.

 

Living in a Daydream

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.

 

 

You Can Be Anything, Just Don’t Be “a Prude”

“You are so cute. Call me if you want to hang out”.

I took the piece of hot pink paper and wrote my number on it, hands shaking and stomach in a knot. Note in hand and ready to make my move, I approached the counter. Behind it stood the most gorgeous boy: soft brown eyes, light brown hair that swept across his forehead, lightly tanned skin. I stood there speechless until Katie nudged me forward; she knew that I had little [no] experience with boys and that my ‘prude self’ required some pushing.

His beautiful lips moved and I felt a strange feeling deep in my lower stomach:

“Hey ladies, what can I get for you?”

“…I will have a veggie burger…thanks…please!”

I scurried to the corner of the room behind a table and braced myself for angry lecture I was about to endure from the confident part of my pre-frontal cortex, the part that normally did not make an appearance until it was too late:

“STUPID. STUPID, STUPID, STUPID. You messed up everything. He probably wouldn’t have called you anyway”.

Sometimes my self was a real b****.

Three “how-to” articles on “making the first move” and two YouTube videos later, Katie and I went back to the Burger Joint where he worked. I watched, horrified and humiliated as Katie brought that little piece of hot pink paper up to the counter.

“This is from my friend”, Katie said, gracefully pointing back at me as she giggled. “She likes you”.

I was relieved, anxious, excited, and furious. Now that he had my number, I could not use it as an excuse for why he never called.

The next day my enthusiasm peaked as I read a text from an unknown number, introducing themselves as “Kevin”. The Kevin! When I learned he was sixteen, I replied that I was too; after all, three years is not a big deal.

He told Katie and I to meet him in town at ten o’ clock that night. We were spending the week on Cape Cod so buses run until midnight and it is really easy to get around. Luckily, a band named “Cobblestones” playing on the main street was a perfect cover; Katie’s parents did not even question us.

The next 3 hours consisted of facial masks, last minute crunches, and a pile of clothes on the floor that did not look good enough. But it was worth it, because when I left the house that night, I felt sexy. I chose a green AE tank top that was my lowest V-neck. All the boys in school this year talked about how much I “grew” over the summer, that I should show myself off. I guess now was as good a time as ever.

The bus pulled away after dropping us off and we crossed the street to find the beach entrance. A sign warning “No Entry After Dark” made me feel exhilarated; we were meeting there because after the beach closes at dusk it is usually empty.

And there he was. Smiling at us with a movie star face. He wore a blue baseball hat, a navy blue shirt with some guy’s name on the back and a number, and khaki shorts. You could call me smitten. Lined up on a bench, him in the middle and Katie on I on either side, we spent some time talking about our summers, where we lived, the usual. For a moment, I noticed his arm slither around Katie’s back and latch onto her shoulder.  Before I could complete the thought, I felt his fingers graze my bare back as his hand effortlessly crawled up through the bottom of my shirt. I retreated inward at the unfamiliarity of someone else touching my body, like a turtle going back into its shell, but I had read too many articles on dating to quit now. Little blonde hairs rose on my arms and I chill ran through my neck as he whispered into my ear, “You’re beautiful”.

Me? Had he just called me beautiful? My heart fluttered as Katie said that she was going to look at some shops, being a cooperative wing woman and opening up an opportunity for privacy. Not even seconds after, his hand slid lower down my back and past my waistline. Discomfort enveloped me as my mind raced with a million thoughts and questions: What do I do? What is he tries to kiss me? I had been kissed on the lips once this year at the eighth grade dance but I did not have to do anything, I just stood there while a boy quickly kissed me and ran away. I was not even experienced with boys, let alone men.

Sensing my hesitancy, Kevin asked me if I wanted to take a walk.

Thank goodness

            Gratefully getting up and following his lead, his hand found mine and our fingers intertwined. My clammy hands had prevented me from holding hands with boys in the past, but I was so anxious I could hardly move.

Turning to face me, Kevin’s other hand wrapped around and rested again on my backside as if it were his to touch as he wished.

The anxiety was debilitating.

“Please stop”, I said, desperate to leave as he just trailed lower down my back. .

Irritability clouded his eyes as they rolled in annoyance. “I wish I had known you were a prude. I would not have wasted my night”, he replied.

I wanted him to stop. I was not ready. It felt more like spiders in my stomach than butterflies.

But to him I was beautiful.

He noticed me.

So when he Katie appeared and asked if we wanted some more time, Kevin quickly answered “yes”, and I did not protest. Gone were the days of being called a prude one day and a whore the next. A tease and a scaredy cat. The fear of this interaction with a boy had consumed me for too long; after this the hype would be over and the stress would disappear.

Kevin turned and his face came too close to mine. He formed this relaxed smile and pushed me gently down onto the grassy part of the beach. If it were raining, I would have felt exactly like those girls in the romance movies that I had always envied.

But my stomach still hurt. Saliva was building up in my mouth like I was going to throw up. I felt nauseous because I knew it was coming- my first time making out. Just stick your tongue out and make each letter of the alphabet with it…Right? My tongue in another mouth…ugh gross, gag me with a spoon.

Which is worse: to be a prude? Or to be a bad kisser? Knowing my luck, I’m sure I am both.

Laying on my back as he hovered over me; his arms flexed as he had a hand on either side of me to support himself, like a pushup that I was underneath of. He looked down at me. Staring. Smiling. Shielding my face out of uneasiness and embarrassment, I turned my head way and asked, “What!? Why are you staring at me?”

He took command and lowered his face down to mine, my mind racing as I told myself, “This is it! This is what I have been practicing and waiting for”. His lips pressed against mine and I tried to replicate what I was feeling, what he was doing. The tip of his tongue pushed between my sealed lips until I opened them slightly in response. His tongue entered further and so I opened wider; there was no rhythm and it all felt very wrong. In the “how to make-out” videos it looked so natural and matched each other’s movements. But “getting the hang of it” did not make it more enjoyable; his body felt like it weighed a thousand pounds as it locked me to the ground.

My face went to the left as I pulled my mouth away and shut it. I panicked. I tried to wiggle. “I’m nervous. I can’t do this”. Get off. Where is Katie? I can’t see Katie.

“I don’t like it”, I told him.

The eyes looking back at mine were not the same warm ones that charmed every customer he took an order from earlier that day.

Offended, he asked, “Oh. Am I not making you feel good enough?”

It was not feeling good at all. Bad, actually. And gross. And awkward. He let me up and I walked over to a set of stairs going up to a closed building. Kevin following behind me, I desperately told him that I wanted to go home and had to call Katie. The solo light radiating from the old building formed an odd shadow against his face, extenuating his jaw line and that mouth.

His facial features and expressions were captivating but not because of attractiveness. Just distinct. My eyes were still locked on his when he assailed towards me and shoved me down onto the stairs; grabbing on to me, he went down, too. One leg over my lap pinned down both of mine as he seized the end of my belt. A slight “clink” sounded as the silver, rectangular clasp at the end of the belt was torn off. Maybe his body weight or his free hand or the numbing numbness that had conquered my body. Maybe that was what kept me glued to the stairs instead of fighting back. I still do not know.

But I did not yell. I did not cry. I told him to stop. To leave me alone. Words don’t mean anything without actions to support them.

“Don’t you want to feel good?” he asked me.

He gave me a quick tug like a mother does to her child when they are too low on her hip and my new low waisted jeans surrendered obediently at his pull. The cold hands latched onto my side, squeezing as they traveled down my waist and clutched my pelvic bone. Experiencing a stranger touch parts of me that I had not yet been comfortable enough to explore, I inhaled deeply in fright when he reached my thigh, “please don’t”. All feeling besides his intruding hand was gone from my arms and legs, something that I was used to dealing with after I heard a smashing sound or a fire or alarm or a gun shot.

“Still does not feel good enough?”

I should have just called for Katie. Time moved too fast; I was so nervous, so afraid, and he felt so strong. I would attempt to grab for his wrists, or try to pull them away from me, but it was hopeless. I winced as he reached down lower and harshly worked his way in to me, unforgiving. I went for his lower arms to pull his hand out and away from my body, but in response he just pushed down more firmly. I forfeited and relinquished what little control I had had left; his force waned when I admitted defeat.

At any mention of it, Kevin would say that he was done talking to me; I had thought that was what I wanted, until it actually happened and I felt my heart actually ache. He had said that he loved me. I was beautiful. He wanted me. To be with me. I could not lose someone who looked at me and felt love. I loved him, too.

Kevin did not have time to see me before we left Cape Cod, so when I got home I laid on my bed and texted him:

< I miss you already >