Introduction
Introduction
In the winter of 1995, my backbone sank into the metal chair in
Mrs. Grill’s high school AP English class as I choked on a headache the size of Madison Square Garden. I was in no mood to
explain the nuances of Jack London’s boring voice. Examples?
Evidence? I couldn’t. The heat pumped through the midcentury-HVAC system, and I was its target, fading fast from the
inappropriate warmth. Writing with clarity was an impossible
scenario for a teenager who was always hot, naturally. The air
shot out of that clunky cage, invisible balloons of pressure that
climbed, then climaxed in a nerve-ending frenzy. In this case,
my sinuses imploded through the tunnels of my head, acid drizzled toward my stomach, inducing a vomit-on-the-way.
I knew enough to stand up and skid into the hallway where
the air was much colder and fresh, and where I couldn’t smell
AJ Martin’s breath from two feet away. In heat, breaths ripen.
Sharp, oozy, and in this instance, not creamsicle-like. When
breaths smell, even the tiniest bit (not in the creamsicle family),
an almost seventeen-year-old like me was sent over the edge
and straight into a remote area like the end of hallway. I had
to accept my academic fate with this exam. None of my peers
noticed that I darted from my seat. Nerds.
I grew up ultra-aware of my senses in a way that felt and feels
… hectic. But also, divine. The sensory stuff doesn’t budge or
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disappear after childhood, so it must be acknowledged, then
managed. It’s a sensory regulation and dysregulation thing. My
therapist is in the school of pushing into a feeling, rather than
running from it with Band-Aid breathing and “positive vibes”
only. In other words, the best way to deal with things, is to see
it, feel it wholly, then refuse to let it ruin your day. It has its
moment, so that eventually, it doesn’t. Validation, then elimination.
That day in Senior AP English—because of the unbearable
temperature in the room that no one else seemed to notice—
my essay score suffered, and nothing could be done to retrace
my steps.
“Mrs. Grill, can I open a window, please?” I asked after
returning to my seat. How could no other classmates feel that
swarm of dirty heat radiating up their nostrils?
“Elaina, it’s the middle of January.”
“Can I work in the hallway?”
“No. That won’t work, Elaina. This is an official test.”
Then excuse me while I swallow the acid from my esophagus
and work through this sinus migraine, all while smelling AJ’s
chicken parmigiana loaded with garlic from dinner the night
before. I can’t believe I didn’t vomit. I rested my face on the
dirty, scribbled-on desk, like I had many times in elementary
school, because it was cold. I didn’t care for Jack London’s
drivel, so maybe I deserved it. My test score was high enough to
obtain some college English class credits, but not high enough
for scholarship money. I call: problem.
There was also a day in May in the early 2000s when I was
supposed to fight Trenton, NJ on behalf of the Manalapan
Teachers’ Union. Our contracts were up, and there were many
contractual bullet points to be argued and negotiated as a team
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armed with T-Shirts and signs. I had attended every union
meeting throughout the fall and winter, retrieved and relayed
all the information to teachers in my building. I felt confident
about the knowledge and preparation for this contract fight.
When the day came to get to the state capitol, the bus exhaust
turned on me. I physically exited the bus, but I had nothing left
to offer Trenton after that shaky and loud ride up the Jersey
turnpike from Manalapan. Sensory sabotage, and for something worth my time, not like Jack London’s voice only about
a decade before this. I should’ve driven to Trenton in my own
car, separately, but even at twenty-seven years old, I didn’t
have a full grip on my issues bbecause it wasn’t talked about. My
issues were cast aside as me being challenging. Cranky.
People around me, as a kid, then teen and beyond, must’ve
often found me difficult to be near at times, or perhaps thought
I was sort of a Nervous Nelly. Adults often spoke in tones that
implied “get over it, kid.” Yes, my nervous system was fully
responsible, and no, I wasn’t doing it on purpose, by any
means. I know now that my nervous system was not relaying
messages properly. I know now that I was drowning in a zigzag
of messages between my brain and my nerves.
Sensory Processing Disorder was first known as Sensory
Integration dysfunction, and discussed by occupational therapist, Anna Jean Ayres in 1972. Basically, if your senses affect
the productivity of your daily living in a leisure, play, or
professional environment, you may get a diagnosis. I’ve never
been diagnosed nor categorized as having a sensory disorder
or condition. I’m so happy for those children who’ve been
diagnosed and now have resources. If a child, teen, or young
adult requires accommodations and modifications for their
sensory processing they will likely receive them. Tools are
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more accessible than ever, and for that, I celebrate progress.
Over the years I’ve taught and met students who needed to
squeeze a stress ball, push on the wall, or twist a gadget. It
makes me feel relief for them, especially having been one of
them at their age. We now have dialogue about sensory issues,
and as a teacher of students with disabilities my heart grows
when I hear the din of those conversations.
I really don’t want this to be a book about the disorder itself,
since I don’t have the diagnosis and don’t feel qualified enough
to even present the research to you. I will save the bulk of the
science for scientists and scholars. I’d much rather make you
laugh and squirm.
If you’re reading this and thinking, Crap. I went to school with
Elaina. Did she think I had bad breath? Stop worrying. You might
have, but I probably did too. We were kids. And if it really
stunk, it’s likely because you ate something delicious only
hours earlier—something drenched in onions and garlic—and
for that, I don’t judge you.
Sensory stuff is not always easy to manage, but once you
learn the triggers you can maneuver your way across social
settings in a reasonable way. A way no one will really notice.
It’s like driving in your dreams, sort of. In my dream the brake
and gas pedal are always made of cardboard. The gas pedal is
usually hard to reach, and this is all if I can even find my parked
car in the first place—you know, in that huge mall parking lot
that changes in appearance every time I turn the corner at the
JC Penney’s. It shrinks and expands every time I complete one
revolution around the building. Basically, it’s not easy at first,
but you learn tricks along the way and become accustomed to
the inevitable hiccups of life.
Back to that cold air that I desperately seek in times of sensory
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strife—the way to kill someone like me to is to put her in a
submarine for as little as three hours. Dead. Even though it has
the dark and solitude I love, there’s no fresh air to stick your
face into. Because you know—there isn’t fresh air. There’s only
sea, and there’s only the reality of being closed in. Even if I
don’t open a window, to know I can open it makes all the difference. Airplanes are rough. I’m not afraid to fly in the traditional sense. I’m more afraid of suffocation midair. The cabin
pressure. The lack of a cool breeze waiting for me somewhere
in the vicinity of my face. More accessible, you could kill me
by tying me to a chair, turn the thermostat up to seventy-five,
light some “clean cotton” candles, and leave me there for a few
hours covered in a fleece blanket. Even in the middle of the
coldest day of winter. Dead. If you really want to have fun, play
some modern country music.
When I was forty-two, I had a surgery that required me to
remain in the ICU for twenty-four hours, and you can be sure I
asked nicely for a window to be opened. “I’m so sorry. They are
locked permanently,” was their answer.
“Why?” I asked.
“Because people … have … you know …”
Yeah. I know. I really do.
⸰
I can’t include sound or taste in the categories of senses that
make me the worst version of myself because there’s nothing
truly negative to say. I love you, cold dairy lusciousness called ice
cream. Bless your heart, tandoori chicken smothered in yogurt
sauce and the brilliant spices of India. Hey lentil soup, are you
single? You’re lovely. Music with bass, treble, and everything
in between—keep it coming, DJ. I can’t recall any textural prob-
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lems with food, and I can’t recall being somewhere thinking the
noise was spinning me into my own personal cyclone. I have a
friend who admitted to me that music with certain sound and
qualities can bring her to the brink of throwing up. I haven’t
experienced that because perhaps my nervous system doesn’t
view those sounds as a threat to my own balance.
I got lost in the original Shoprite of Toms River, NJ in 1984,
and it wasn’t my mom’s fault. It was one of two things: either
I was seduced by the Easter Bunny coloring pages on the large
window by the register, or I was laser focused on the selection
of gumball and prize machines at the front of the store near
customer service. Most likely I became fixated on the one with
the full globe of bright pink gumballs the size of Ping-Pong
balls. I was enamored and still am, by arrays. You know those
fruit stands in New York outside of the bodegas? The flowers,
oranges, lemons, melons, you name it? I could look at an array
all day. Even my own doodles consist of stacks, piles, and rows
of anything you can stack, pile, or sort: cookies, gumballs,
flowers, marbles, ribbons, rocks, and light garlands. The Easter
Bunny coloring pages weren’t dissimilar from this, as kids my
age who also loved colors filled that page with crayon streaks,
either soft like a feather or loud like a drum solo. It all depended
on the colorer’s crayon press preference. Were you a shade-in
with the side of the crayon person, or a give it all you got kind
of crayon master? My mom found me thanks to the PA system.
My very first memory of a book is The Book of Seasons by Alice
and Martin Provensen. Every page is delicious, every stroke of
watercolor or acrylics leaves my nervous system calm. There’s
a particular page where the kids are standing barefoot on a hill.
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The colors burst off the page, but in a muted, earthy way. It’s
spectacular, and the page refreshes my feeling of being alive. I
continue in my adult life to seek artifacts, like tarot cards, that
resemble this same muted color scheme—one that feels calm to
touch because the colors are subdued.
In my thirties I experienced a real wave of kinesthetic
pursuit—sewing fabrics by hand to the voice of Billie Holiday
in my kitchen. I’d purchase patterned fabric from Joann’s by the
yard. I sewed symmetrical square gifts for craft shows, friends,
and family. It was part nesting ritual, and part “I need to do
something with my hands every day while my baby naps so I
don’t lose my mind.”
I learned during this time of my life that if I didn’t create
things, anything, I developed anxiety in my body and I’d get
stuck, both mentally and often physically to the point where I
had to get Reiki sessions to get unstuck.
“Elaina. You have to either exercise or make things to stay
well.” My Reiki therapist changed my life with those words.
“You are both a natural athlete and creator, and when you
neglect either of those, your body will let you know, like it is
right now.”
Where and when did all of this begin? My very first memory
of being a human being involves a pink and black polka dot
birthday hat—the cone shaped paper kind with the paper fringe
around the edge, which was also pink. I remember the feeling
of the uneven fringe in my fingers. The smell of the vanilla
icing on my rectangular birthday cake that my mom made me.
It was edged in gumdrops. Neighborhood kids and preschool
kids were scattered around our house. I was turning four so it
must’ve been February, and we were in my family room with
the blue carpet. Can everyone recall their first memory in terms
of their senses? Maybe.
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We should talk about the difference between having strong
senses of smell and touch and temperature versus having it
control your life. Here’s an example: if I’m in a movie theater
and someone is coughing in a pattern, say every fifteen seconds
nonstop, my entire experience is screwed. I can’t concentrate
on the movie because their cough goes right through me. Oh,
but it’s a sound, and I said sounds don’t bug me. This isn’t music.
This is someone’s mucus rattling around in their throat and
chest for everyone to hear in a constant pattern. It sends my
nervous system to places that are cruel, and it takes every bit of
self-control for me remain with my family in that theater.
I’ve had people tell me that this feeling of mine is insensitive
to those with chronic coughs. I have no answers. It’s a private,
paid-for situation where we all should consider where we are
and what we will be doing in relation to other attendees? It’s
not in the middle of a beach or a public park. I feel for the individual with the cough, I really do, but does that mean it’s okay
for everyone else to not be able to enjoy the physical space?
Only recently, my husband and I were out to eat in New
Paltz, New York and a teen girl coughed ferociously every two
minutes. A wet cough that needed medical attention. I couldn’t
eat my meal as she was only about eight feet away. Is it wrong
for me to think, “Maybe take a cough drop, drink some tea, or
maybe wait until it subsides to go eat in public around others?”
I don’t know. I wanted to enjoy my meal. The restaurant was
crowded, so moving tables wasn’t an option.
Now that I know how to manage my sensory environment,
life is better. It took years of life, Reiki training, self-awareness,
and breathing properly. It also took fresh chunks of ginger
root, tabletop fans, sound machines, air purifiers, ice packs,
and a husband who rubs my scalp while we watch Netflix. It
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also requires the occasional visit to the very strong women
who offer chair massages in local malls. The strength of their
elbows and thumbs makes my life a better one. Also, goddess
bless lord and savior Jonathan Van Ness for their perfect breakdown explanation of how indica can help me across the anxiety
mountain during the sleepy hours of the night.
