“What does it feel like to have sensory issues? What makes them better or worse?”
I have this thing, where I am asked a question and it takes me fifteen, twenty minutes (sometimes more) to answer it, talking the whole way through. In conversation, it’s a bug. In public speaking, it’s a feature.
Then I get the question that momentarily silences me — not because I can’t answer it, but because I can’t answer it in fifteen or twenty minutes unless I write it out first. I write much better than I extemporaneously speak. And I speak better when I’ve written on a topic first. Words are bricks and I have to build ideas with them a few times in writing before the right phrases will find their way out of my mouth later.
So this is my first attempt to answer that question. What does it feel like to have sensory issues and what makes them better or worse? These will not be concise essays. I am going to ramble my way through this topic and I invite you to come along for the ride. I’m feeing out the concept of feeling. The concise, polished prose comes later. This series of posts is pure excavation — digging around in my life and seeing what I can pull up from the grates.
The first thing that absolutely must be said on this topic is that I can only talk about my own profile of sensory issues. Sensory issues are like fingerprints — all fingers have swirls and whorls that look similar but each has their own pattern. Similarly, different people have different sensory needs. Writing out my thoughts will only help me get so far in explaining autistic sensory issues because it’s not something I could do single-handedly. It will take many Autistic voices to explain sensory issues because we all have them but our swirls and whorls vary from person to person.
I once knew a married couple, both Autistic, who had conflicting sensory needs. He was routinely auditorily understimulated and she was routinely overstimulated. They had to plan their life carefully so that he could get the loud sounds and sonic-bodyfeels he needed and she could get the pristine silence she needed. That’s a difficult combination that needs a lot of love and patience to accommodate.
The next thing I feel strongly about saying is that, even though I’ve been known to use the phrase myself, I have hesitations about the phrase “sensory issues.” I spend a lot of time in nature and I’ve come to realize that few of my sensory issues are actual sensory issues so much as issues with the way my local culture has shaped our environment in this particular corner of early 21st century, North American space-time. Most of my alleged sensory issues are not issues when I am out in the woods or desert or mountains or marsh or wherever I happen to wander. My primary “difficult senses” – hearing and vestibular – give me difficulty nearly everywhere. My other “sensory issues” don’t bother me when I’m “out a ways” from cities and towns.
There are still noises in nature that are hard for me. Sandhill cranes, for example. Having never met a sandhill crane before this month, I was surprised to learn that their call is roughly at a location on the Pain Scale half-way between a store-provided power chair backing up in an echoing warehouse grocery and a passing fire engine siren. Three sandhill cranes were in my cousin’s front yard and began shouting in unison. I’ve never felt so injured by bird song before.
And vestibular issues are harder for me when walking than when driving. One reason I love to drive is that I feel so graceful. I am much better with controlling the steer of a wheel and the timing of a pedal than I am with controlling my gait. Walking, I feel awkward and fear I might look a little drunk. Driving, I am Peggy Fleming.
But, other than stumbling around to escape the noise of sandhill cranes, my senses are not assaulted in nature; they are soothed. Shinrin-yoku — “forest bathing” — is a balm to my spirit. The forest is a sensory blanket that loosens my knotted shoulders and opens my lungs to air so satisfying it feels as if I’d been holding my breath for days.
Most of my sensory “issues” would not be significant enough to notice if I lived in a quieter, slower, less populated piece of space-time. Were I living in human pre-history, I might not be considered to have sensory issues at all. It might be that I would instead be recognized as a person with some senses tuned exquisitely fine and the community might value and support me for those delicately tuned senses. But I live in the here-now, so this is what it feels like to be me:
My hearing is the most fine-tuned and the most problematic of my senses. I have heard bats echolocate. Not squeak (I heard that, too) but the actual echolocation sound. I can only hear it in the very lowest range (bats go up to around 100,000 Hz. I can hear up to around 25,000 Hz. Bat echolocation goes down as low as 14,000 Hz.) but I can hear it. Having hearing up to such high pitches meant that it took me years to be taken seriously when I said I couldn’t hear human speech very well.
Many people lose hearing in the higher end of their range as a result of time and aging. When I complained that I often couldn’t understand speech, but my hearing tested as better than perfect in the high range, I was sent away with, “maybe you’re imagining it.” But the difficulty never went away and now I understand it by a name: central auditory processing disorder. I usually shorthand-explain it as “kind of like dyslexia of the ears.” It’s neurological. I have a great ear for music but words get jumbled. Sometimes I shorthand it even more into, “I’m hard of hearing. It helps if you face me when you talk to me.”
On top of all that, I have vestibular hyperacusis. This one has a shorthand, too: it’s like a kind of synaesthesia where high-pitched sounds get perceived as motion. SOmetimes it’s a leasant motion but more often it’s a harsh, nauseating jerk. Oh, also those sounds hurt. I used to say “loud sounds hurt,” but years of self-observation have changed that to “high-pitched loud sounds hurt” because I’ve discovered that I’m fine with loud low-pitched sounds and I especially love listening to bass guitar or deep drums (not high pitched snares) at volumes loud enough to feel in my body as much as hearing in my ears.
But I’m supposed to be telling you how it feels to have this combination of hearing/vestibular sensory defensiveness.
Squeaking door hinges hurt. Beeping cash registers hurt. Whistling teakettles hurt. That humming sound fluorescent lights make hurts. Sirens hurt. Doorbells hurt. Forklifts driving in reverse hurt. Garbage trucks backing up hurts. Salvation Army bell ringers hurt. My cell phone hurts. The beep my car makes when I open the door with the lights on or the keys in the ignition hurts. Fryer timers in fast food restaurants hurt. Loud motorcycle engines hurt. Sudden laughter hurts. Intercoms hurt.
The world hurts.
All sounds happen at all times. You know those games people do where you have to tune in to your auditory surroundings and list off five or ten things you can hear? I don’t like those games because they aren’t fun for me because I’m already tuned in to five or ten or maybe twenty things I can hear all the time. That’s great in the high desert, where I’m hearing the wind in the sagebrush and the crumblerustle of a snake heading down his hole as I pass through his territory. A mockingbird is singing in a scrubby tree and in the distance a marmot is calling a warning about me to his colony.
But in town, it’s thirty people talking at the same time, a waterfall of noise sending up an obscuring mist of word cloud. And there are dishes clattering back in the kitchen. And the door opening and closing. And the cash register blinging and churring. Lured in by the promise of all-you-can-eat cocktail prawns, I leave with indigestion from processing all the noise, only a few shrimp eaten.
Or it’s ten people talking at the same time punctuated by an espresso machine shlurbling. Coffee cups are clinking together and music is playing in the background on a stereo but a local customer is strumming on a guitar at the same time. Someone is kicking their chair in a rhythmless thump, matching neither the stereo nor the guitar. Slurping. Clicking. Shuffling. And the door opens and closes. A new batch of loud entries and departures and the sound swirls back around on itself again.
The combination of all these noises is deafening. It’s hard to be in the coffee house when I’m not drumming. Everything answers to the drum. The drum is the heartbeat at the heart of it all. When I am on the drum and it is pounding through my body and steering all other sounds into its wake like a gravity well pulling comets through the night sky. I feel power. But the drum is also a servant to the music, following where it goes. Endlessly chasing its tail, the drums wrap around the outside and hold everything together, including me. I feel right. I feel whole. I can bear to be inside the coffee house.
What it feels like is that you talk too loud and I have to back up from you (two steps if you also have a strong cologne on.) What it feels like is that the world is a noisy and chaotic pace I have to prepare myself to enter. What it feels like is frustration, because I hear too well to feel comfortable and not well enough to connect with the world of people. What it feels like is embarrassment to ask for captions (even though they make the difference between me enjoying the show and me being completely lost or bored or struggling so hard to understand that I’m exhausted for hours afterwards) because I know hearing people hate them so much and I will feel like I’m needy and demanding and putting everyone else out and ruining their enjoyment of the show. It’s better to ruin just my enjoyment than everybody else’s, I think, and make myself small, and smile when others smile and nod when they nod and laugh when they laugh . . . . or just wander out of the room when everyone else is caught up in he show, looking for something else to do.
In my next post, I will either talk about my next most intense sense or I will talk about what makes hearing better or worse for me, or maybe I’ll talk about something else entirely.