Thruhiker: Day 3

March 22 (7:30 – 16:30)
Dawson County Park – Lakeside View (25 mi)
Total C2C miles: 45.5
Weather: Freezing in morning, cold all day, cloudy – intermittent breeze

In the morning, it’s below freezing. The water in my water bottle? Solid ice. The leftover dolmas, falafels, and couscous I’d saved for breakfast? Frozen. I check the weather on my phone. 28 degrees? Below freezing, when the last frost date for this region is March 15. Record-setting cold temps.

I’m grateful I selected the quilt with three-season use that’s designed to go down to 25 degrees. I didn’t expect frost, even in the mountains, but at high altitudes, you never know, and the trail will take me over 10,000 feet in the Granite Falls range. I was snug last night, but I’m cold this morning, so I pack early, pick up a latte and breakfast wrap from the park vendor, and hit the trail with the early morning sun.

I can see my breath.

The trail wanders past the cutest barge on the river. It looks like someone could live there. I imagine myself living there. What if instead of walking the trail, I traveled the waterways? What if it was one of those barges that you propel with those long sticks? Then, I’d walk up and down the length of the boat, while the boat traveled leisurely down the river. My arms and shoulders would get sore, pushing the big pole.

As I walk the trail, I try to figure out the math. Would I be walking more, poling along on the boat, for I’m walking up and down the length of the boat, or am I walking farther along the path, since the boat would be moving faster?

I think this is calculus.

I can’t really figure it out, but I get this nice sensation of moving along, the speed of the boat carrying my own steps more quickly, and this makes the trail travel faster for about an hour, until I notice that, even though I’m walking, I’m cold.

It is so cold.

I check the weather on my phone. It’s down to 25 now. The forecast predicts a high of 32, with temperatures tonight reaching the teens.

I wasn’t prepared for this.

A fountain in a park I pass is frozen.

The cherry trees are blooming, and I wonder if all the blossoms will freeze and fall off tonight.

The sun can’t really penetrate the clouds.

I just walk.

For a long time, I don’t think. I just walk. When I’m hungry, and I get hungry often, since it’s so cold, I munch on nori, which has like zero calories and a lot of salt, so my tongue starts to feel thick.

The water in my water bottle is still frozen.

At the parks I pass, the public drinking faucets have been turned off. Too cold.

The strawberries I bought are frozen. I put them in my mouth and let them thaw, swallowing the ice water as it melts.

The trail runs through another town, and I stop at a cafe in mid-morning. I drink three glasses of warm water, a coffee, and eat another breakfast wrap. I resist the urge to buy lunch, for it will just freeze in my pack on the trail.

Ice has formed along the edges of the waterway, in the shaded areas.

What will I do tonight? I’d planned to hike all the way to Lakeside Park and camp there. But I’m not sure I want to spend the night in my tent. My quilt can handle 25 degrees, but if it gets down to the teens, will I even be OK?

What makes it even this cold? It never gets this cold down here.

It’s the jet stream, all messed up. The polar regions warm, the temperature differential between the poles and the rest of the globe goes flat, and the jet stream gets wonky, and the cold seeps down here, while the polar caps melt.

I wonder if this summer will bring the Blue Ocean Event. When the polar caps melt, the sea level will rise a few meters. All the land I’m walking today is below sea level.

If the levees don’t hold, this whole region will be under water.

When my dad walked the C2C trail, he felt the continuity of it. “One thing lasts,” he always told me, “the land. The river may change course, the rain may erode the cliffs, but even if the course is different, we still have the land.” He meant the whole ecosystem. My dad relied on the patterns of seasons, knowing that the last frost came in early March, the cicadas sang in June, the crickets in September. My dad counted on all these patterns outlasting him, as if it didn’t matter if he weren’t here for the rest of my life, because the patterns would be. The rhythms of the land would go on, and in them, I wouldn’t feel alone, because all my dad taught me about the land and nature would continue in them.

Only that wasn’t happening. It wasn’t that my dad didn’t know about climate chaos, because he’d known about it since before I was born and was always talking with us about reducing emissions and our carbon footprint. I guess it was just that he was an optimist, and he felt that we’d make changes quickly enough.

After all, he’d made changes in how he lived, and how our family lived. He died before the jet streams got screwed up. He died when he still had hope.

As I approach Lakeside Park, my lips, my nose, the tips of my ears, my fingers, and my toes feel frozen.

I don’t think I can camp tonight.

There’s a motel in Lakeside View, near the park and not far from the trail, and I check in there. It’s only 4:30, but I can’t walk anymore when I’m this cold. I’m worried I’ll get sick if I do, and then I’d be laid up for a week or more, and my schedule would be messed up. I need to get through the desert before the heat sets in, for if it’s weirdly cold now, it could be brutally hot then, for that’s what climate chaos means.

I take a long bath. All my food, except the nori, is ruined when it thaws. I get a pizza then return to my room and watch Greta Thunberg videos on my phone. “We showed that we are united and that we, young people, are unstoppable,” she says, and I feel a little better.

I take out the deck of cards I bought yesterday, with the mice on the back and the adorable Jack of Clubs, and I play solitaire until I can’t keep my eyes open any longer.

As I lay in the lumpy motel bed, under the scratchy blankets, I imagine the water rising, slowly covering the trail I walked today. The red and green barge floats over the flooded meadows. The mice on my deck of cards live in the barge, and Jack Clubs mans the pole, walking with his little mice feet up and down the length of the barge, while the barge floats on.

“You walk farther,” he says to me, in his mouse voice, “for I am carried by the current.”

And I fall asleep.

<< Previous

Spectrum: Bullying Prevention Week

This is Bullying Prevention Week in the U.S. A few days ago, I googled “What is bullying?” because I wanted to see if Trump’s behaviors would qualify as bullying. Based on the criteria listed in What Is Bullying, on, a federal government website managed by the U.S. Department of Health and Human Services, designed to educate, motivate, and empower, the answer is, yes. Trump’s actions fit the criteria for bullying. With good fortune, we may soon have a White House that is not inhabited by a bully. Let’s work to make that so and to change the culture of our nation which makes it possible for nearly half of voting citizens to (still) support a bully.

But that’s not what this post is about.

This post is about how, when reading through the listed criteria, I came to recognize that I experienced bullying, at home and at school, throughout my childhood, and how recognizing that is allowing me to bring to light some painful and entrenched responses and reactions so that I can respond and react to my current life situations in a way that is healthier and more balanced, with strength and empowerment, to help achieve the world based on kindness that is so important to me.

First, the criteria from

  • Verbal bullying is saying or writing mean things. Verbal bullying includes:
    • Teasing
    • Name-calling
    • Inappropriate sexual comments
    • Taunting
    • Threatening to cause harm
  • Social bullying, sometimes referred to as relational bullying, involves hurting someone’s reputation or relationships. Social bullying includes:
    • Leaving someone out on purpose
    • Telling other children not to be friends with someone
    • Spreading rumors about someone
    • Embarrassing someone in public
  • Physical bullying involves hurting a person’s body or possessions. Physical bullying includes:
    • Hitting/kicking/pinching
    • Spitting
    • Tripping/pushing
    • Taking or breaking someone’s things
    • Making mean or rude hand gestures

As I read through the list, the shocking realization came that I had experienced, throughout childhood, each of these forms of bullying, repeatedly, both at home from my brother, and at preschool, Sunday school, and elementary school from classmates, from the age of two through thirteen.

I suppose to many it would be expected that bullying would be part of my childhood. After all, a widely quoted study reports that 61% of autistic students have been bullied. Another study found that among students with Asperger’s, the percentage is 65% (Carter as qtd. in Anderson).

I was familiar with those statistics, but I always thought that I was one of the lucky ones who had not been bullied. Sure, kids teased me, called me names, made inappropriate sexual comments, taunted, and threatened me, but, like my mom said, they were “just being kids.” Sure, my classmates left me out on purpose, told other children not be my friends, spread rumors, and delighted in embarrassing me on a regular basis, but, like the principal said, “kids are just mean sometimes.” Sure, I was regularly punched, kicked, pinched, tickled against my will, and sometimes spit at, and often tripped or pushed, and my things were taken and broken, and kids regularly made mean or rude hand gestures, but that’s “just what kids do, right?”

No, I see now. That was bullying. All of those acts that made my life as a schoolkid and a little sister hard were acts of bullying.

I was supposed to “be stronger, rise above, ignore them.” Ignore them. “Just ignore it.” I was probably told that more, at home and at school, than anything else.

I majored in ignoring it.

Ignoring it brought some strength and solace. Much of my deep love and trust of nature, of trees and birds, especially, comes from my efforts to ignore bullies. When the kids at school would not let me sit with them at lunch, the live oak trees at the back of the schoolyard opened wide arms and took me in for a happy lunch hour. I turned to God, too, who always whispered about the strength of my spirit and the deep connections that can be found amongst all of us, the bullies, included.

So behind the unhappiness and hurt lay a depth of solace, comfort, joy, resilience, and strength. Relying on this, from an early age, allowed me to grow into a strong individual.

As an adult, I often felt, if I’m a strong individual, I can’t have been bullied. Kids were just kids.

But I see now that these kids were bullies, and I was bullied.

At the time I came to this realization, I was feeling upset from a meeting that I’d attended a few days earlier. I’d been puzzled about how this meeting upset me. The meeting had been with my supervisor for my teaching job and another professor, with whom I’d had some happy collaborations. I was so upset and confused, even a few days after the meeting. Maybe, I reasoned, it was because my routine had been disrupted. Maybe it was because I’d taken two hours personal leave from my full-time job to attend the meeting to receive instructions that could just have easily been emailed to me. Maybe it was because the social communication exceeded my processing capacity, and I was left with that discomfort of not getting all the information to fit together. Maybe it was all of those things.

And maybe it was also because my supervisor invited the other professor to a barbecue at his house on Sunday but didn’t extend the invitation to me, while I sat there in my chair, looking down, trying to become invisible, feeling like chopped liver. I recalled that every other time I have been with these two other people, the supervisor has invited the other professor, his friend, to do something: go to drinks, go hiking, catch a movie, come over for a barbecue, get together to share reading notes. And I have not once been included. I’ve sat there, and tried to become invisible.

Now, I realize that my supervisor and this other professor are friends. I know they’re both male, both the same ages, and that they share political and cultural beliefs and values (which I share, too). I also realize that they’re both full-time, tenured professors, while I am a part-time adjunct. They belong. I don’t. I get that.

I don’t say that his behavior is bullying. It’s ungracious, unwelcoming, and excluding. But it’s not exactly bullying, I don’t think.

It does trigger all of my past with social bullying, and so, when I sit there feeling awkward, what rises in me is panic, fear, shame, awkwardness, and all sorts of discomfort.

When this happened at the recent meeting, I had not yet realized that I had experienced social bullying as a child, so I did not realize that my response and reaction were also in response to my childhood experiences. I recognized my response and reaction as being out of proportion to the situation, but I did not know what caused me to feel so deeply upset about something so seemingly trivial.

In other situations, at work and in the MMORPG I play, I notice that I become upset when I’m not included or left out. My responses often seem odd to me, too extreme for something that isn’t really very significant. What keeps me from “just ignoring it?”

I think I know now. It’s the childhood bullying.

When I didn’t believe that I had been bullied, then events could come along and trigger the old feelings, the shame, the embarrassment, the stress and trauma of exclusion, and I would be left feeling confusion on top of the discomfort. What is making this such a big deal?

But now that I realize that I was bullied as a child, I can address those deeper issues.

It’s a big deal because it reawakens all of those feelings, reactions, and responses I felt when bullied as a child, when I was told to stuff the feelings, get over it, be stronger, and just ignore it.

I’ve begun to put energy and love towards healing from the childhood bullying. It will be a process, since I’m only now allowing myself to explore and resolve from many hurtful incidents.

But I already notice a shift. And I feel prepared to step in with love for myself when next I am excluded, shunned, or shut out. I’m prepared to recognize and heal from the deep hurt I experienced so that when new events come up, I can take them in stride.

I won’t ignore them. I’ll pause and love myself and go steep in nature for a while to regain balance. And I’ll realize that childhood bullying leaves an impact. We can heal from it, and we’ve got to look at it to do so.

Works Cited

Anderson, Connie. “IAN Research Report: Bullying and Children with ASD.” First published: 26 Mar. 2012. Revised: 7 Oct. 2014. Accessed 15 Oct. 2019

What is Bullying?” Accessed 15 Oct. 2019.


Thruhiker: Day 2

March 21 (7:10 – 9:15 / 12:30 – 16:50)
County Parkside – Cripple Creek / Cripple Creek to Dawson County Park (18 mi)
Total C2C miles: 20.5
Weather: Frost in morning, warming during day, sunny, cold at night – no wind

I wake early and pack my tent. I just want to hit the trail. Surprisingly, I’m not sore. I’m not tired.

I slept so well last night–not a single worry, just a straight-through sleep. And, maybe it’s the bright morning sun, but I’m not worried when I pack camp, either.

I’m not sore. I can’t believe it. I hiked over 12 miles yesterday, and I’m not sore. I thought for sure I’d need to take it easy today, make it to Cripple Creek to buy the supplies it looks like I’ll need, since I’m too early in the season to count on the trail-angel barbecues, and then maybe not make it much farther.

But the way I feel, I’m thinking I can make a good day.

My plan is to get to Cripple Creek for breakfast, stock up, and be back on the trail by noon. I think I can put in a full afternoon.

It’s so beautiful.

It frosted last night, and the branches of the willows have been dipped in white. They’re lace.

I was so snug in my tent, I didn’t even notice.

But during the morning, it’s still cold. I can see my breath. The tip of my nose hurts, and the trail crunches under my feet.

But before I even put the first mile behind me, I’m warm inside. The contrast between the coldness in the tip of my nose and my earlobes and the warmth inside, in my lungs and the space around my heart, is delicious.

I feel like I could walk like this forever. Even my pack feels a bit less awkward, like I’m getting used to the length of stride I need to take with it, like I know how much to pitch my body forward to carry it.

I think how funny it is that when we experience something pleasant how we want it to last forever. Like I really want this morning, this trail, to last forever.

But no sooner do I think that, than I start thinking about breakfast, like, where will I have it? What will I order?

I want coffee. I want pancakes. Or maybe waffles.

And I start to feel in a hurry to get to Cripple Creek.

The trail sort of disappears, and all I’m thinking about is destination. Destination, and a pot of coffee. And syrup, to pour on the waffles.

Then I notice that all the time I’ve been thinking this, the landscape has changed. The trail must have gained elevation, for I’ve left the willows behind, and now I’m entering into pine meadows, dotted with maples.

I can’t figure out why the maples have autumn colored- leaves. Then I realize it’s new growth and catkins. I hope the frost didn’t snip the buds.

The trail continues along the river until it veers northwest along a tributary, Cripple Creek, and soon, I’m in the town named after the creek.

I feel almost shocked to see people. I hear them before I see them, and I realize that, even though it’s been only a day since I’ve spoken to anyone, I’ve sort of forgotten how to process spoken language. The voices sound like water, like wind, like birdsong, and it takes a shift in perspective for me to realize that they are speaking words that carry meaning, and that I might be expected to reply.

They seem excited to see me–the first thruhiker of the season! I guess it’s a big deal down here that the trail runs through the town. Everyone who hikes the trail brings in revenue, so hikers are welcome. And thruhikers are celebrities.

They want to take selfies with me–the first hiker of the season.

I meet a young scout. He asks me my trailname.

“I don’t have one yet,” I tell him. You can’t give yourself a trailname. It has to be given to you by other hikers, and I haven’t hiked enough to have earned one.

“Can I give you one?” he asks me.

I guess it’s OK. I mean, this kid isn’t another thruhiker, but he’s a scout. He tells me his scout project this year is hiking all of the trail that goes through Cripple Creek. It’s about five miles–but for a little kid, that’s a lot.

“Sure,” I tell him. “Give me my trailname.”

“Firsty,” he says, “since you’re the first.”

In town, I stop by Whole Foods. I get breakfast at the breakfast bar: tofu scramble, steel-cut oats with honey, berries, and walnuts, seven-grain toast, and coffee with refills. I eat while my phone recharges. Then I wander through the store, picking up things, and putting them back on the shelf. I can’t decide what to buy.

At last I settle on dry mixes of hummus, bean dip, falafel. Wraps. Nori packs. And I can’t resist strawberries. Everything is light and will fit in my pack. I also buy a lunch for the trail, with enough for supper: dolmas, couscous salad, more falafels.

As I’m checking out, I get this sudden inspiration to pick up a deck of cards and a pocket-size sketch pad, so I’ll have something to do at camp before bed. I love solitaire, and I get this pleasant vision of me sitting on my sleeping bag, with a spread of cards before me. Shuffle, shuffle, flip. But they don’t have any at the store, so I walk through town to find a place that might have these. Finally, I see a toy store, and they have tiny decks of cards, with pictures of mice on the back. The face cards are little mice, too. They’re adorable, especially the Jack of Clubs, my favorite card. They have a tiny sketchpad and this really cool black pen and a 3B pencil.

I feel pretty happy as I head back to the trail.

I’m still full from my huge breakfast, so I hike for a few hours before I stop for lunch. The trail follows the river west, and I get the feeling of how everything flows to the sea, though it will be a good week of walking before I finally get there.

It’s so peaceful, and I’m glad that I’m Firsty the first, for there’s no one else on the trail, and I hear the water and the birds. I track the shifts in light, and that’s how I measure my day.

I get in the zone and forget to take pictures. I just walk. The trail feels good, my legs feel good, I’m even starting to feel comfortable with my pack.

As I reach Dawson County Park, where I’ve planned to camp tonight, I smell something amazing. Pretzels, coffee, and vanilla cupcakes!

There’s a vendor booth set up there, and Eric, this nice guy who gives hiker-discounts, is working it.

I have leftovers for supper, so I think about skipping buying anything. But at last, I settle for a cupcake, for desert.

I ask him if he’ll be there in the morning, and he will. So I have breakfast covered for tomorrow. Cushy trail life! What’s even better is that there’s a restroom–with actual plumbing, hot water, and a shower.

After I finish my cupcake, I head to a quiet section of the park. Sunset pours this lavender color over the sky, and I feel blessed. I am free. Everywhere I turn, I am cared for. I thought life on the trail would be hardship, and I’m sure I will have plenty of tough times, but for right now, I am walking down Easy Street, and loving it.

<< Previous | Next >>

Thruhiker: Day 1

March 20 (10:15 –16:05)
Magnolia Park – County Parkside (12.5 mi)
Total C2C miles: 12.5
Weather: Cool, cold, and sunny

First day on the trail!

As I write the date at the top of this post, I also realize it’s the first day of spring. Unplanned, but auspicious nonetheless, to begin my trek–and, really, the trail to my new life–on the first of spring.

My selfie shows how I think I feel: excited, eager, energetic, bursting with life and enthusiasm at the prospect of everything new.

But the pic below, snapped by this guy who got off the bus at the park when I did, shows how I really feel: kinda scared, a little hesitant, a lot nervous.

I didn’t sleep well last night. I kept going over my supply list. I kept thinking about the weight of my pack, wondering what I could leave out, then I kept reviewing the supply list again, wondering what I had forgotten and what else I could bring along. Could I sneak in my bunny slippers? My pillow?

I left them behind, stuck at the top of the dumpster behind my apartment. I miss them now that I’m writing this.

I really shouldn’t worry–I see that now that I’m on the trail–and I wish I’d realized last night, tossing and turning for the last night in my bed, with my pillow, that the first few hundred miles of the trail are a cake-walk. Literally. I could get cake every day, if I wanted.

The first part of the trail goes through the suburban, urban, and rural Southeast. I won’t be getting to actual wilderness for several weeks.

This section of the trail is well-groomed and runs along roads and through towns and cities. If I want to, and I might, I can stop in Starbucks every day, to recharge my phone and caffeinate myself.

I knew this when I was planning my supplies. I haven’t packed much food–just snacks, really–because I know that I can stop off at towns along the way to pick up meals.

I’m glad I’m getting off to an easy start. Some thruhikers like to go the opposite way, starting in the northwest and ending up down here, so that by the time they’re trail-weary and hiker-starved, they find themselves on Easy Street, with sandwich shops, trail angels barbecuing feasts at every picnic ground, and Whole Foods Markets just a skip off the trail.

But I’m happy to be going the direction I’m going.

For one thing, I like an easy start. This will let me get used to my pack, to build up to doing 20 miles a day, and to not freak out too much about whether I have all I need. This is the safe start.

Plus, I’ve got to go this way. I’m walking away from my old life, towards my new one. And that only heads in this direction.

The trail is so beautiful, and though it’s cool in the sun and cold in the shade, everything sparkles with spring light.

I love the way the dirt trails feel beneath my shoes–cushy and springy. My legs feel really good.

The only thing that’s awkward is my pack. I can’t get my balance right. Maybe I should’ve bought a smaller one. I seem to pitch forward, and when I try jumping from rock to rock across the stream, I just about fall sideways.

Nothing hurts, really. It just feels really awkward, like, unbalanced.

Comments on Guthook rave about the barbecues trail angels put on at the grill sites all along this part of the trail, so I’m looking forward to a big veggie burger for supper.

But when I get to the place where I planned to camp for the night, it’s empty.

I’m the only one.

I check the app again. (That’s another good thing–I’ll have great reception all along this first segment of the trail.) It seems I’m early by a few weeks.

The official C2C season, even down here, doesn’t start until the end of March. And even then, the heaviest time is at the end of summer, when the Southeast-bounders come.

It looks like I have the picnic and tent site to myself.

I wasn’t planning on this, and I didn’t bring food for an actual supper.

I make the best of it with a Cliff bar, some raisins, dates, and almonds, and an apple. It’s a little sweet and I feel a little shaky, but it’s OK. It’s a lot of calories, which I need, since I walked for hours.

I set up the tent and check my GPS. Tomorrow, I’ll tuck into Cripple Creek for breakfast, Starbucks, and to pick up some actual food for times when it’s not convenient–or possible–to stop by town.

My mind feels like it’s still worrying–like it’s reviewing detail after detail. Did I even notice the trail today? I flip through the pictures I took on my phone. I really need to learn how to use this phone as a camera. The light looks weird in all of them.

But then I notice that, even with the weird light, all the pics are beautiful. They’re glowing. They’re like all lit up.

When I close my eyes at last, snug inside my tent, the trail flashes by, scene after scene of light on the water, through the branches, over the rocks.

This was a good first day.

<< Previous | Next >>

Thruhiker: Day 0

We were going to get married, but we didn’t. I’m glad. I’m OK with being somebody’s girlfriend, or even somebody’s lover, but I don’t want to be anybody’s wife.

After my boyfriend moved out, I sold everything. Bought my Osprey Arial AG 55 pack, my ultra-light quilt, a Tarptent, rose-purple Salomon shoes, a few pairs of socks, shorts, t-shirts. Water bottles. Cliff bars. I am ready to go.

I’m hiking the Cross Country Scenic Trail, affectionately known to thruhikers as C2C, corner-to-corner, because it runs from the southeast corner of the nation to the northwest corner.

The trail is 2,055 miles. If I hike 20 miles a day (and the serious thruhikers do upwards of 30), it will take me nearly 103 days. That’s only three months.

I’ve downloaded the Guthook app, so I can scope out the best tent sites and places for water. Hikers post comments, too, so I’ll be able to keep up with the latest conditions.

I guess it’s so millennial to be hiking with a phone. My dad, he hiked this trail when he was a little younger than I am. Of course, he didn’t have a phone, except for the payphones at ranger stations or refill stops along the way.

I don’t have any timeline, except that dictated by the seasons and their weather. I don’t have any place I have to get to, except the next tent site, and the one after that, until I get to the end of the trail.

It can take me three months. It can take me five. It could even take six, but after that, the weather will start to get cold up north.

The point is that it doesn’t really matter. I’ve got my gear. I’ve stocked up on food. I’ve set up my tent in our old bedroom, and I’m sleeping in it tonight, to get used to it.

Tomorrow, when I wake up, I pack my tent, I pack my supplies, and then I leave my apartment. I drop off the keys with the manager. And I’m off. I’m hiking across the country, and I’m leaving all this–all of it–behind.

Author’s note: Hey, what’s this? It’s a new SimLit series! I’ve been inspired by a thruhiker’s blog, Roaming Wild Rosie, which tracks her route along the Pacific Crest Trail (which happened to be one of my dad’s favorite trails and one I grew up hiking sections of). I can’t really take five months away from my job and home to hike the trail, so I thought I’d send a Sim on a trek. Maisie Santos will be traveling by foot from Willow Creek all the way to Brindleton Bay, and in my imagination, that’s from the southeast corner of the Sim continent to the northwest. Let’s say it’s 2055 miles. She’s blogging her adventures on the trail, and I hope you come along for the journey!

Next >>

Spectrum: “I Prefer Not”

Preference as a Tool to Identify Areas for Modification, Accommodation, or Avoidance

Trigger warning: The video embedded below comes from the National Autistic Society’s series “Too Much Information,” which presents the sensory and social perspective of autistic people. If you are sensitive to sensory over-stimulation, you might want to skip the video.

When I was around twelve years old, my English-teacher mother brought a film home from school for us to watch, “Bartleby the Scrivener,” an adaptation of Herman Melville’s short story.

During the first few moments of viewing, I felt delight at discovering what seemed to me to be a solution for managing my specific needs, especially around sensory and social communication processing. “I prefer not to” could potentially be the perfect thing to say when I was being asked to do something that was too much for me. When my mom and older brother laughed affectionately along with Bartleby (or so it seemed to me), I thought that maybe this approach would even be acceptable, along with practical. But their laughing along with soon turned to laughing at, and laughing at turned to incomprehension, and incomprehension turned to scorn. By the film’s tragic ending, I was alone in my identification with Bartleby, and I realized that his response to a chaotic and overwhelming world was not one I could adopt.

The story, a 19th Century portrait of an autistic man buffeted by sensory and social assault, ends tragically. I came away from the viewing with the lesson that if the world would not accommodate me, I would need to accommodate the world.

Bartleby’s approach was to say “no,” in the politest way he could, when startled or surprised. Judy Endow brilliantly interprets an autistic person’s “no”:

Often ‘no’ or ‘I don’t know’ [or Bartleby’s ‘I prefer not’] is a default response when the autistic neurology experiences a surprise. A neurological surprise is anything unanticipated in the moment.

Endow, Judy, “Autistic Neurology and Behavior.” 29 Dec. 2016.

I made great efforts as a child to be able to say, “yes,” but I think that at many times, “no” or silence remained my default. My boyfriend, several years after we’d been together, began to preface every new or different suggestion he would make with “I know that you will say no to this.” Somehow, his saying that opened my eyes and also opened a space so I could examine what he was actually saying, rather than reacting to the neurological surprise of something different.

While I approached much of my life with the idea that “yes” was the best approach, and that, since the world won’t accommodate me, I should accommodate the world, I have in the last 15 years come to value the response of “no.” (I’ve been known as the “Diva of ‘No'” at my office!) I have recently begun to explore my preferences as a means of identifying where I need accommodations or modifications. I am taking note of the times when, internally, I say to myself, “I prefer not.”

When I say, “I prefer not to go to the mall,” what I really mean is that my experience is like this:

While I have not had a meltdown in public, the sensory and social overload I experience is what the child in this video experiences, and after a trip to the mall or any crowded public space, I will likely meltdown alone in the car or later in the garden. I can put on a brave face while suffering through the overload, but afterward, to recover, I will need to release the discomfort, and tears help. Better yet is to avoid exposure to those types of environments and situations. My default “I prefer not” to trips to the malls or events with crowds is generally something I can accommodate by simply not going. Occasionally, for work, I might need to go to an event with hundreds of people, and if I do, then I know that I will need to take time and measures afterwards to recover.

When I say, “I prefer not to attend meetings with more than five people,” what I mean is that the social communication processing required by those types of situations will exceed my capacity. I won’t be able to take it all in. I will also, even if I am doing my very best camouflaging, say something that somehow doesn’t sit right with somebody.

I have strategies: I’ll bring something I can fidget with (the caps of pens work great for this); I’ll doodle; I’ll jot down notes of what I want to say so that I can try to avoid interrupting, which is hard if not impossible (I never seem to know when there is an appropriate opening.); I’ll remember to smile; I’ll check the volume of my voice so I’m not too loud nor too soft; I’ll watch that my fidgets aren’t too obvious. OK. I’m exhausted already just listing everything I have to do to get through a meeting, and I haven’t even gotten to the auditory tracking, other social communication processing issues, and sensory processing considerations. Meetings are hard.

When possible, I listen to my “I prefer not” and skip large meetings or find a way to be excused from them. Sometimes, like last Friday, I will choose to go, when it seems professionally important. I went to a meeting for my online teaching on Friday. I picked up some good contextual information, like I expected I would, and I made an appearance. I also, even still, five days, two meltdowns, and many garden-hours later, still feel a little post-meeting-zone. I’m trying not to dwell on the comment I made at the meeting’s end which seemed helpful to me (about ways of gauging student engagement through the tone of the participation in text-based communication in the online class) which seemed to cause a wall of frowns from those listening. I’m still puzzled. I’m trying not to dwell on how, as soon as the meeting was over, I bolted out the door onto the path beneath the wide open sky, my mind reaching for sky’s enveloping silence, rather than staying to chat it up with colleagues and supervisor.

I am trying to simply put that meeting in the past and move on.

When I say “I prefer not to use discord [voice chat]” while playing online, what I mean is that I have a hard time tracking what is being said while I am concentrating on the game, and once my social and auditory-information processing become stretched beyond capacity, I stop having fun. I have discovered a modification I can use, which is to listen only and leave my mic off, and I’ve learned a trick of attention I can apply, pretending that the voices are in the background, like the sound from a youtube video my boyfriend is watching across the room. With this modification and trick, I find that I can handle listening to live voice chat. As long as it’s not two-way, as long as I can consider the voices as background commentary (rather than actual communication), I seem to be able to process it OK without getting overwhelmed.

Like most of us, I have many more preferences. Rather than discounting them and pushing myself to comply with activities “I prefer not to,” I’m allowing myself to regard my preferences. These are indications of areas where the discomfort probably stems from exceeding my capacity or exposing me to “too much”.

Growing up, I was taught to disregard discomfort. I was encouraged, and even forced, to do things whether they were comfortable or not. Wear clothes with scratchy labels, lace, and seams. Sit next to your brother, even when he tickles you and doesn’t stop. Go to the mother-daughter tea (in uncomfortable clothes) and listen and make an effort to participate in the endless chat about uninteresting things–and don’t talk about anything you’re remotely interested in. Perform in the piano recital. Go to the fireworks on Fourth of July. You’re a baby and “overly sensitive” if you cry at the loud noises. Shutting down is simply being stubborn. Push yourself. Stretch yourself. Disregard your comfort. You are just like everyone else, and if they enjoy this, you should, too.

When Glen Gould was asked in an interview by Yehudi Menuhin why he stopped performing, Gould replied that it made him uncomfortable. Menuhin replied that he didn’t see that as any reason not to do it. Gould replied with a laugh that it was every reason not to do it!

It is important to respect our comfort. When we’re asked to do something we find uncomfortable, something we “prefer not” to do, we can explore the root of the discomfort. Is it because this will exceed our capacity? Will we be damaged? (And stress is very damaging.) How long will it take us to recover? Will modifications and accommodations help reduce the damage and recovery time?

I’m allowing myself to respect my preferences. It’s likely that I won’t go to a mall again, nor will I go to a movie theater. I won’t often answer the phone. I will probably fly to visit family this winter, but I’ll be prepared with a range of strategies and modifications I can put in place.

The world seems better now, a little softer and more accommodating to those of us who process differently, than it was when Melville wrote “Bartleby the Scrivener”. But it’s still harsh enough. We may know more about autism and differences in social and sensory processing, but we still live in a world that was not created by us, for us. We still live in a world that, for the most part, will not accommodate us.

That’s why we need to be able to say no. Now that I’m sixty, I’m going to let myself say what I wanted to say when I was twelve, “I prefer not.”

<< Previous | Next >>

Spectrum: What is (dis)Ability?

“I like your ‘can-do’ attitude,” my supervisor told me at my annual review, my first with her, as she’s a new boss.

I grew up in a family that approached everything with a “can-do” attitude. The idea that there was anything at all that we couldn’t do never entered into consideration.

As I examine this, I see it as both an enabling and an ableist attitude.

It has enabled me by instilling the confidence to approach any task, any learning activity, any project, and any dream.

I have learned that it’s an ableist view when I come face-to-face with activities I can’t do, or with those that cost me, in comfort, energy-level, and processing-power, so much that I will need to allot time for recovery. These are areas where I need accommodation to be on a level playing field with neuro-typicals.

What is an ability? What is a disability?

The ADA defines disability in this way:

“…in the context of the ADA, ‘disability’ is a legal term rather than a medical one. Because it has a legal definition, the ADA’s definition of disability is different from how disability is defined under some other laws, such as for Social Security Disability related benefits.

“The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity. This includes people who have a record of such an impairment, even if they do not currently have a disability. It also includes individuals who do not have a disability but are regarded as having a disability. The ADA also makes it unlawful to discriminate against a person based on that person’s association with a person with a disability.”

“What is Disability?”

The simple definition I have come to adopt is that my abilities are those things I do well, without extra accommodation, without excessive challenge, and without requiring help, assistance, or accommodation. In some areas of ability, I’m able to excel.

My disabilities are those areas where I require assistance, accommodation, or modifications, or where I face challenge in a way that is significantly greater or more demanding than faced by neurotypicals. In some areas of disability, I am not able to perform acceptably without significant accommodation. In other areas, especially those requiring executive functioning, activities like paying the bills, cleaning house, hiring and scheduling with repair people, buying a new car or appliances, attending meetings or functions with more than five people, I need to adopt specific strategies, apply coping skills, and realize that I will need to allow for recovery and balancing time afterwards.

A good example of both ability and disability, for me, is online communication. I process and communicate through written text well, so, for me, communicating through online text chats works extremely well. When I first began playing Elder Scrolls Online, I felt an ease in communication that I seldom experience in face-to-face situations. As a result, it didn’t take long for me to fill my in-game friend-list or to create a fun and collaborative guild with other players. However, once most online gamers reach a certain point in their online friendships or teamwork, they move to discord, which has voice chat. This is an area where I face challenges. My mind cannot easily process spoken word, especially when I am doing another activity that requires concentration, like playing a video game. For my online friends, speaking and listening is easier than typing and reading, so they prefer to chat through discord rather than use the in-game text chat. It’s the other way around for me, where in-game text chat plays into my strengths and helps my brain feel good, while voice chat causes extreme disorientation and a great deal of discomfort. I recognize that for end-game content, I will need to use voice-chat, and I have recently begun to stretch my comfort level in giving it a try, but it is not pleasant, comfortable, or enjoyable for me. In fact, it scrambles my neurology and leaves me feeling overwhelmed and a little bit stunned. I feel my intelligence and focus drop, and my game-play suffers tremendously. I really need the accommodation of text-chat in order to be on a level playing field when it comes to in-game communication.

As another example, the way my neurology works, I cannot spend hours in rooms with fluorescent lighting–this jars my nervous system and causes discomfort and anxiety. I need a modified work environment that includes natural lighting.

Probably the most prominent area where my challenges show up is in friendship and social interactions, specifically social communication processing.

When I first began this series, I wrote about a friend who was in the process of deciding not to be my friend. She has since made the decision, and we haven’t been in touch for about six months. The friendship feels over. In some of our last communications, both in person and through email, I tried to express to her that I was beginning to suspect that I was autistic, and that I recognized that I lacked the capacity to meet her expectations and requirements. Her expectations are not out-of-line for a normal friendship, and, in fact, in one of her last conversations with me, she told me that “in a normal friendship” she would have expected the friendship to have progressed in a certain way by this time, with her meeting my boyfriend, being invited over to see my garden, going out with me to movies and weekend activities. I realize these expectations are not out-of-the-ordinary. I also shared with her, from the beginning, that these types of activities are, at present, a bit out of my capacity. She felt that when we were together, we should always be “100% there.” Of all her expectations, this was the one I felt I could consistently commit to; however, my experience of being “100% there” is very different from hers, for when I am completely present, I am often not verbal. I am present, feeling, seeing, and hearing the flow of energy around me and, if I’m with someone, around that person and between us, too.

It became clear to me that for our friendship to continue, I would need to have accommodations, basically, a relaxation of expectations. And it was clear to her that for the friendship to continue, I would need to meet her expectations. And I simply don’t have the capacity for that.

Social communication is another area where I don’t have the capacity to process in a neuro-typical way.

I left the annual review with my boss, which had lasted over an hour, feeling confused, overwhelmed, and uncomfortable. The written evaluation, which I’d read before my in-person review, was excellent without qualification, in every performance area. Yet I could not reconcile that positive review with the experience of sitting across from my boss while she delivered her oral review. She brought up different points than she mentioned in writing. I couldn’t read her face. We talked about current and future work projects, and I found myself going into detail, then trying to reel myself in so as not to bore her with too much detail. It sounded like she was making an effort to speak softly–which I appreciate–but it also sounded like this caused energy to be pent up inside of her, which seemed to feel uncomfortable for both of us. The air around her and the energy shooting out from her was spiky–it felt sharp, like jabs. Does she not like me? How do I make sense of the disparity between what she wrote and this spiky feeling? What is she saying? I can’t remember what she said now, and I couldn’t process it then. What causes the words she speaks to be different from what she wrote? Is this a positive review, or am I in trouble somehow?

I left feeling that I was in trouble, but not because of what was said or what was written, simply because of the feelings and because I was not able to process her spoken words or the other signals that I perceived.

This type of disjuncture between content and context, between explicit meaning and implicit signals, between facial expression and feelings or energy, is a common experience for me, and one I lack the ability to process. I have read that neuro-typical people know how to tell when someone is lying and that they’re able to read hidden meanings and to pick up on social cues and agendas. I lack this ability, and this is where I most often become aware of my disability in social communication processing. I pick up on the things that don’t fit together, but I don’t know what it means.

I think this is why I find the phone and voice chat so very confusing, in addition to my challenges in processing spoken word. I hear the emotions and energy, but I can’t see the face or see the energy around the person. I know even less what they mean, how they feel, and I don’t know when to talk or what I can say, so I am mostly silent, which doesn’t make for a very effective phone conversation.

I was raised by a mother who had been popular in high school, and my sister was popular among her crowd, as was my brother. My older siblings always had at least one friend over after school and on weekends. Making friends was presented as being the most natural part of being human. It was seen as something that was easy and effortless.

Until junior high school, I could not make friends–or if I stumbled into a friendship, I was unable to maintain it. Because of my family members’ experience of ease in friendship, and because of our family’s “can-do” attitude, I was told that if I tried hard enough, or if I really wanted to, I would be able to make, and maintain, friends.

I wanted to. I tried. I failed. This is still the case. This is a disability.

Throughout my adult life, I’ve gone through periods where I’ve attempted to put on my best “can-do” face, and go out there and make some friends. Surely, if I tried hard enough, I could do it! These times have, without doubt, been my unhappiest. I must not be trying hard enough. I must be missing some important secret. There must be something terribly wrong with me. Why am I the weirdest person on earth? I think I’m pretty wonderful, full of love, and that I would make an amazing friend. What is not working? What am I not getting?

In friendship, I need accommodation. I need friends who are willing to email, rather than talk on the phone. I need friends who are willing, at least for a few minutes, to listen to me share a special interest. I need friends whose words match their faces, or when they don’t, will at least explain to me what is behind the mismatch. I need friends who will let me be there “100%” when that means that my 100% might be in silence, perceiving in the different way that I do, feeling the air, feeling the energy, watching the play of light, sharing our being through a non-typical perception.

In “Is Autism a Disability or a Difference?“, Judy Endow writes:

“Being out and about in the community poses significant challenges. The sensory overload and neurological processing differences dictated by our brain along with ever present challenges with communication and conventional social understanding are such significant differences, even though we can accommodate for them, we are usually exhausted from doing so by the end of the day.

“…we are often expected to look and act like typical people regardless of the challenges imposed by the neurological difference of our autism. Because we appear to be like others, our difficulties and needs are thought to be our own personal problems… Others often look at us and ascribe negative intentionality and character flaws to us. “

Is Autism a Disability or a Difference?“, Judy Endow,

That last statement, that others “ascribe negative intentionality or character flaws to us”, rings especially true. My former friend felt our friendship withered because I “didn’t care.” Not having capacity is different from not caring. Some of my limitations with social communication processing have been seen as by others as dishonesty or lack of transparency. Being confused is different than being opaque. Some of my challenges with executive functioning have been seen by others as signs of laziness or carelessness.

For those of us who are what Endow calls “the walking, talking autistics,” those of us who can go into our communities without assistance, our experience of “disability” happens because our styles, our ways of processing and our neurology, are different from the norm. The societal world around us has not been set up for us or to meet our needs.

Sometimes, as a thought practice, I like to flip the situation: What if our way were the more common? What if it the neuro-typical brain were the abundantly synaptic brain? If that were the case, would we approach those whose brains have trimmed synapses as if they were disabled?

“Oh, you can’t see colors when you listen to music? What a loss! Oh, you don’t see energy swirling around other people? You can’t see those light molecules, those sound waves? You don’t feel how everything is connected, and you aren’t in the moment? You can’t feel yourself think?”

The world we would create would be very, very different–much more comfortable for us, and possibly less comfortable for those with brains with trimmed synapses.

I wonder if then, rather than having medical researchers examining ways to make autistic brains more like non-autistic by inducing the trimming of synapses, researchers would look for ways to halt autophagy, so that the non-autistic brain would have the abundant synapses of the autistic brain.

“Here! Administer this drug to your child, it will cease the process of autophagy, so that your child’s brain will be abundantly synaptic and your child will be able to perceive so much more!”

I doubt this would happen. I believe that part of the multi-perceptive gift we have with our abundantly synaptic brains results in an appreciation of diversity. We know that humanity gains something by having a wide range of perceptual styles available. I like to think that, if our neurology were typical, we would, as a society, look for ways to accommodate those with trimmed synapses, just as we wish that others would look for ways to accommodate those of us with abundant synapses. It’s when we’re not accommodated that our abilities lead to disabilities.

Works Cited

Endow, Judy. “Is Autism a Disability or a Difference?” Accessed 5 Aug. 2019.

“What is Disability?” Accessed 2 Aug. 2019.

<< Previous | Next >>