My
husband sits across the plastic folding table from me. The cultural
hall teems with families and people of all ages, shapes and sizes,
gathered for the ward chili cook-off. Laughter. Talk. Metal chairs
scrape across the wooden floor. Banjo music and yodeling intertwine
themselves with the children’s playful banter.
I
sit staring at my husband. His lips move. He’s facing me. Noise
comes from his mouth, mixing with the noise of each person seated
near and far and those shuffling past with their plates overflowing
with potluck tastiness. I sit staring at him, trying to understand
what he’s saying. I can’t.
People
behind me discuss chili options. People to my right discuss skin
cancer treatments. The missionaries to my left discuss how long
they’ve served in the ward. Across the table on my right, a
sister chimes in with her own knowledge of skin cancer and to my
left, my stepson chats about his upcoming dental appointment
necessary to complete the missionary paperwork.
A
man behind me discusses figuring out how to stop a perpetual cooler
drip, concerned people may slip and fall. The child behind me is
determined to have four helpings of cheese while his mother tries
explaining that everyone behind them in line wants cheese, too.
My
sweetheart still faces me, talking, looking straight into my eyes. I
stare at him, attempting to sort the more than five conversations
going on around me. I catch words and try to string them together,
but cannot make sense of what he’s telling me. He raises his
voice in an effort to be understood.
The
problem is, I don’t need greater noise. I need a filter to
sort all the noise into what I need to pay attention to and what can
be ignored. I don’t possess that filter. The noise level builds
in a cultural hall now doubling as an echo chamber. I want to clamp
my hands over my ears and run screaming from the room — but
screaming would only add to my problem. I have a Sensory Processing
Disorder (SPD).
Sensory
processing disorders make it difficult for people to process
information around them delivered by sensory input. Processing
tactile, taste, visual (lights), smells, and sound is something which
most people do effortlessly. Not so for people with sensory
processing disorders.
Since
there are five senses, there are multiple ways a person can
experience a sensory processing disorder. Not everyone who has one
will experience it the same way, nor will they experience their
symptoms the same way each time they have them.
Stress
and sleep are variables which alter how a person processes
information. For example, if I have enough sleep Friday night, I can
go to a party on Saturday and not have overwhelming difficulties
processing all the stimuli around me, allowing me to stay late and
enjoy the party.
But
come Sunday, since I did not get a lot of sleep, I find myself
listening to people turn the pages in their hymnal before sacrament
meeting. Organ music is excruciating. Everything around me feels like
I am in the focal point of a stellar Bose sound system with the
volume on high. My brain just cannot filter out what it needs to pay
attention to and what it can ignore.
I
once explained this to a friend of mine who is profoundly hard of
hearing. He can hear some noise (sirens, loud motor cycles, and so
on), when he wears hearing aids. He chooses not to wear hearing aids
because they amplify all noise, not just the important things. My
brain acts as a hearing aid — a powerful and acutely tuned one.
I
am not unique. Evidently many people who live with psychotic spectrum
disorders have the same problem. In fact, there are so many of us who
do have sensory processing disorders, that researchers are beginning
to take notice.
Recently
I participated in a neurological study based on this theory through
University of California at San Diego. In this study, participants
with psychotic spectrum disorders were hooked up to EEG machines to
monitor the brain’s activity and measure the “startle
reflex.”
I
was handed a set of ear phones. For 20 minutes, I watched silent
cartoons while exposed to random beeps. The hypothesis was that those
without schizophrenia become accustomed to the beeps and can ignore
them. When I took the test, I nearly jumped out of my chair at each
beep for the entire 20 minutes. In short, I never became accustomed
to the beeps.
By
the time I finished with the exercise, I left frazzled. (Okay, so
it’s not a technical word, but truly best described the
feeling.) It’s important to note that when I participated in
the research testing, my illness was in remission for three years,
yet I still had the inability to sort, distinguish, dismiss and
ignore stimuli.
When
a person living with an auditory processing disorder’s stress
level is abnormally high, his ability to filter and distinguish noise
drastically reduces. Consequently, if a person doesn’t
recognize the cause of the stress, he is powerless to remove it.
For
twelve years I was the powerless one. I did not grow up with a
sensory processing disorder. It came about after I had my first
psychotic break. Consequently, I was not diagnosed as a child, nor
had I ever learned any coping strategies to deal with it. I simply
was unaware and it left me vulnerable.
During
those twelve years, every single family trip resulted in dropping me
off at the ER with a meltdown on the way home. It was something that
just didn’t make sense. I loved my family. I loved vacations. I
loved being around everyone and reveled in the laugher, late nights
and joy of being surrounded by family who lived out of town.
Yet
every single time we got together, I ended up in the hospital. One of
my doctors even suggested that I divorce myself from my family
because the pattern was so strong. I went to the family reunions
excited to be with everyone and three days later I was fit to be tied
— literally. I don’t know how my family survived. (I
don’t know how I did either.)
In
2010, when I began graduate school, I worked in a department as a
research assistant. It was a wonderful department to work in.
Everyone got along really well. Laughter frequently echoed through
the common areas. The problem was that I had to work in the common
area. Focusing on my work was impossible.
One
day I stepped over to the cubicle where an associate professor sat.
He was always diligently working, buried in literature and analysis.
I wanted to know his secret to focusing amidst the distractions.
“Mark?”
He did not respond. I raised my voice, “Mark!” He looked
up, removing an earplug.
“Hey
Sarah, what’s up?”
There
it was, the answer to my concentration problems. Ear plugs. It was so
simple. I began using ear plugs that day. Later that month when I
went to the family reunion, I brought my swimmer’s ear, wax
earplugs. It was a fun-filled weekend of fun. When things got too
loud, I just popped in my ear plugs.
On
the ride home, as we approached San Diego, my dad asked me which
hospital I wanted to be dropped off at. I was confused. I hadn’t
had any symptoms, no outbursts, no voices, no tears. I didn’t
understand why he was even asking. When I told him I was fine, he
glanced at my mom over in the passenger seat and then back up at me
in the rearview mirror.
“Sarah.
We have a twelve-year tradition; just get it over with. Which
hospital do you want to go to?”
In
an instant I realized that we did indeed have a twelve-year
tradition. I mentally did a vacation rewind and recognized that I did
not have a single meltdown. I was not on edge. I was not hearing
voices and I was not suicidal after a family vacation for the very
first time since my first psychotic break.
I
about laughed aloud with disbelief. “Seriously Dad, I’m
fine.” My mom turned around in her chair and stared at me —
hard. “Really Mom, I’m fine.”
“But—”
“I’m
actually doing great and the reunion was a blast.” I grinned on
the way home from a reunion for the first time in more than a decade.
“Are
you sure?” My concerned father eyeballed me from the driver’s
seat. “What changed?”
“I
think it was these.” I reached up and pulled out my earplugs.
Even though they are wax, I can still hear everything around me. It
just isn’t at the level that pushes me over the top. The ear
plugs act as filters for my brain that can’t.
I
still use earplugs, some weeks more than others. There are days when
I never take them out. My earplug use is directly correlated with the
stress levels in my life.
But
now, I know how to deal with that stress. I know what causes it and I
know how to fix the symptoms. Sometimes I come home from a hard day
and pop in those earplugs, turn off the lights and just let my brain
unwind under a pile of heavy blankets. Oddly, the weight of the
blankets calms me. Within thirty minutes, the stress pounding through
my heart eases. Generally an hour later, I am back to normal again.
Sensory
processing disorders are common in children with developmental
disorders like autism. Parents of youngsters living with SPD are
familiar with the meltdowns that overstimulation causes. Please
understand a meltdown is completely different than a tantrum.
Since
I had never experienced a sensory processing disorder as a youngster,
I didn’t recognize what my problem was when it cropped up. I
just thought that somehow my emotional fuse had shrunk to an
extremely flammable millimeter after I began experiencing symptoms.
Really, it was my brain’s newly acquired inability to filter
external stimuli.
Through
my course of study in the Rehabilitation Counseling program, I
finally learned that what I experience has a name — Sensory
Processing Disorder. What a relief! Once I learned to control the
problem, it vanished — until the next time. But when the next
time comes, I know now what to do.
Sarah Price Hancock, a graduate of San Diego State University's rehabilitation
counseling Masters of Science program with a certificate psychiatric
rehabilitation.
Having embarked on her own journey with a mental health diagnosis, she is
passionate about psychiatric recovery. She enjoys working as a lector
for universities, training upcoming mental health professionals.
Sarah also enjoys sharing insights with peers working to strengthen
their "recovery toolbox." With proper support, Sarah
knows psychiatric recovery isn’t just possible — it’s
probable.
Born and raised in San Diego, California, Sarah served a Spanish-speaking
and ASL mission for the LDS Church in the Texas Dallas Mission. She
was graduated from Ricks College and BYU. Sarah currently resides in
San Diego and inherited four amazing children when she married the
man of her dreams in 2011. She loves writing, public speaking,
ceramics, jewelry-making and kite-flying — not necessarily in
that order.