90,000 Miles to Me

17,315 Miles • Learning to Listen to My Body

Back in Missoula, I spent a week or so puttering around, feeling kind of lost since my plans to go west went up in flames. I took care of some house-holdy things, thoroughly cleaned out my water system, attended a free REI class on knot tying and a lecture at Montana Natural History Center on medicinal plants, and found a Greek Orthodox Church who welcomed me for two Sundays and the Feast of the Dormition. But what I’ve mostly been doing is a lot of reflecting.

One of my major intentions on this journey has been to carve away all of the extraneous and irrelevant things in my life so as to figure out is what is really important. That is playing out in a number of different ways, and I’d like to tell you about one of them today.

As much as I hate to admit it, I am not a brain on a stick or a walking will with appendages that merely carry out my plans. My body is a highly complex biological system and I can’t keep depriving it of what it needs or messing with its systems and expect there to be no consequences.

There are consequences to even small depravations, I just don’t pay attention to them much or I attribute them to other things. I’m moody because of that woman at work, not because the fluorescent lighting is affecting my hormonal rhythms. Or I’m tired because I’ve been working too hard, not because I’ve been watching screens at night which affect my melatonin production so that I don’t sleep well. Or I’m feeling sluggish and have no energy because it’s getting to be flu season and I must be getting sick, not because I have been eating too many refined carbohydrates and not enough fresh produce.

It’s not that I haven’t known these things for a long time; I’ve read plenty of health articles and books and have lots of personal experience all telling me the same things, it’s just that none of that seems particularly relevant when I am trying to get a project done or have 27 things on my to do list or just want to watch Star Trek after a long day when I should be winding down.

But since I set out on this Grand Journey, I have far fewer excuses for my bad moods, lethargy, and poor sleeping habits, not to mention a host of other physical issues. Without being able to blame my lack of energy and high anxiety levels on work or other things, yet still having the same symptoms (they’re significantly reduced, but still big issues), I’ve been forced to look for additional causes.

That search started in museums. And libraries. Both. But I wasn’t there looking for information about my issues, rather my issues found me in those places.

At the Denver Museum of Nature and Science, I was looking forward to seeing some of the actual Dead Sea Scrolls, but before I even got to the scrolls, I ended up curled into a ball in an out-of-the-way corner with my eyes buried in my knees and my hands clamped over my ears. One of the security docents soon came over and asked me if I was okay (of course I wasn’t) which forced me to have to answer several questions and convince him that I was just overwhelmed and needed a few minutes and that he didn’t need to do anything. The Dead Sea Scrolls exhibit was unusually crowded because of its popularity, but that sort of thing happens to me a lot in museums and libraries—traditionally quiet, low-key kinds of places.

Here’s another version of that story. I went in excited to learn but couldn’t read the sign describing a piece of pottery because there was an audio clip playing in the next room, and in the next room I couldn’t listen to the audio clip because there were people having hushed conversations that I couldn’t block out. Then someone moved, distracting me yet again, and a child laughed with a high-pitched voice, startling me, and someone brushed my arm in the crowded space, sending a shock through my body, and and and…

It wasn’t just the Denver museum. I go to public libraries a lot to use their wi-fi, but have to wear a wide-brimmed hat and sunglasses to block some of the fluorescent lights that give me migraines, and am constantly distracted by the sound of people walking on the carpet and someone’s music spilling out of their earbuds and the copy machine whirring and people moving around and and and… 

I don’t usually end up in a ball at the museum or library, because I can feel the panic attack coming and leave before it hits and curl up in my bed in my van and stimm or cry and then not go outside for a few days. You’d be surprised what lengths I’ll go to so as not leave the van, and no, I’m not agoraphobic, just easily overwhelmed.

I used to be able to put up with public places and situations more often and for longer. What’s happened to me? Am I just being self-indulgent? It doesn’t feel like that in my body. It feels like pain in my body.

I have emotionally beaten myself up over and over about why can’t I handle stores and restaurants and even visiting peoples’ houses. “I’m not trying hard enough” and “it wasn’t even that crowded” and “no one else had a problem there” and then I swing over to “people should be more aware of how loud they are talking” and then “I shouldn’t judge my neighbor” and back to “why can’t I get through one thing” and “I’m making a big deal out of nothing” and again “why aren’t public places more accommodating” and then over to “you’re making it up” and “why can’t I just be normal?”

I am finally realizing that if this stuff is affecting me this much, it is not that I’m not trying hard enough or making a big deal out of nothing. There is actually something going on. Something is affecting me more than it does most people.

Okay, to be fair, it’s not like I haven’t known what that something is, at least in general outline.

It has been obvious since I was born that I am more sensitive to my environment and react more intensely to lights and sounds than most people. Many of my family’s classic stories about me as a baby and child are about how I “over”-reacted to things. How I spent my first several months of life screaming, threw tantrums in stores (but not to get things), how my aunts didn’t want to drive me places because I threw up so much in cars, how I was fiercely stubborn about not wearing certain clothes. 

Then, in my mid 20s, I was diagnosed with a light sensitivity called Irlen Syndrome, or Scotopic Sensitivity Syndrome, and discovered that wearing glasses that are tinted to a customized color suddenly changed the way I saw the world. I felt less agitated under fluorescent lights, I could read easier and faster, numbers and music suddenly stopped moving around on the page, and my depth perception and motion sickness improved dramatically. Just because of colored glasses. (I wrote a more complete description of this on my old blog here.)

That lead me a year later to Audio Integration Training, which reduced how often I had to ask people to repeat things, despite having good hearing, because the neural receptors that integrate the sounds coming from both sides of my head were finally working together better.

Then, several years later, a friend made a comment which led me down another path to an autism diagnosis. I learned that many autistic people also have a lot of sensory issues, that is, sensitivities to lights, sounds, touch, etc. It makes sense to me that two neurological conditions that affect how a person perceives and responds to external stimuli would often affect the same people. Although they commonly occur together, they are separate issues. Not all autistic people have sensory issues, and some people have sensory issues who aren’t autistic.

While I was interested back then, the autism itself was so much to process that I didn’t look into the sensory aspect very much. At the time it was just nice to know that I wasn’t making it up and that I’m not alone.

Now it has been three years to the month since my autism revelation, and while that answered many of my questions about myself, especially as regards my social difficulties, I have still felt like there was a piece of the puzzle missing.

The piece that gives me panic attacks in museums and makes me want to scream “be quiet” to people in libraries. 

To fill in that part of the puzzle, I’ve been reading the book Too Loud, Too Bright, Too Fast, Too Tight by Dr. Sharon Heller, and have recognized myself in far too much of it to ignore. 

As Dr. Heller described other people’s experiences, I was shocked. So many these people’s seemingly “odd” behaviors reflected my own experience, yet were things that I have chalked up to my being “weird” or “personality quirks” or less friendly appellations. Quirks like putting cork trivets on kitchen counters to avoid hearing the light clink of placing a cup or bowl or fork on the counter, or wearing sunglasses inside and on cloudy days, or piling six to ten heavy blankets on my bed, even in summer, and then sticking a foot or a leg out when I get too hot.

And some things I just assumed that everyone did but didn’t talk about because they were so basic or personal that the topics simply didn’t come up. Well, apparently not everyone rinses and dries their hands repeatedly while washing the dishes, keeps their eyes closed through an entire shower, or takes half an hour after waking up to gradually introduce light to their closed eyes before opening them, and as much as another hour to be able to speak the first words of the day.

She writes that “As many as 15 percent of otherwise normal adults have a nervous system that is overly sensitive to sensation. What is interesting, ho-hum, pleasurable, or exalting for most people can be irritating, disgusting, alarming, and even painful to them.”

This leads to what she calls being “sensory defensive.” I like that name better than “Sensory Processing Disorder,” the official term, because it sounds less judgmental and describes what I actually do. I defend myself. 

If sounds bother you, or light or touch or whatever, you will tend to avoid situations in which those irritants are present. This makes sense to me, and is exactly what I’ve done most of my life. Even as a child and teenager, I didn’t go out much and needed time at home to recuperate afterwards, where it was usually quiet, dim, and had very little drama. With an autistic dad, an introverted mom, and no siblings, we had a pretty low-key household. And I needed that. I shudder to think what I would have gone through (and how I would have turned out) in a “normal” household, full of people and activity. Most likely, my autism would have been diagnosed at a young age because I “look” and “act” more stereotypically autistic when under stress, and that would have been a constant high-stress environment for me.

Perhaps a few examples of what I mean by sensory issues would be helpful. As you read these, try to imagine that for each one of these small sensations, my insides clench up, my neck and shoulders get tight and hunch over, the muscles in my legs, arms, fingers and toes clamp up, my stomach contracts, my breath gets shallow, my heart races, my eyes narrow, and I hyper-focus on the thing that caused all of this. Depending on what it is, it might also cause pain to shoot through my body or provoke a full body startle or trigger a headache. Hundreds or thousands of times a day. Which basically means that I’m never un-clenched.

  • The feel of a loose hair on my face or neck will send a shock through my body and I have to move it and rub the area it touched hard until the feeling is erased. If my hair isn’t pulled back tightly in a pony tail or bun or tucked under a hat, it is a sign I’m feeling really good that day.
  • Having a fold or wrinkle in my clothes or bedding lightly brushing against my skin is maddening, and I squirm and tug at my clothes and blankets frequently to get them straightened out, then have to repeat that every time I move. And moving to smooth out one bunched up area often causes another.
  • Every sudden sound grabs my attention with a startle, even if it isn’t loud, and even if I am expecting it. Phones ringing, car doors closing outside, footsteps in gravel, chair legs sliding against the ground as you get up from the table, the refrigerator coolant cycle turning on, these all act on my nervous system like an old-fashioned alarm clock. I go to great lengths to dampen everyday household sounds and avoid places with lots of sudden sounds (restaurants, movies, gyms, parties, cities, anywhere crowded). Again, the volume of the sound isn’t the biggest issue (loud noises are an issue unto themselves), it is the change from no noise to noise that grabs my nervous system with a jolt. The Star Wars intro makes me hyperventilate every time. I like music that fades in.
  • Taking off or putting on clothes is an intense experience because of so many things touching and rubbing so many parts of my skin. I have often worn some or all of my day clothes to bed just to avoid changing, and try to plan what I wear for the day so that one outfit will work for all the possible activities and weather of the day. Sometimes I won’t put on a jacket that I am carrying when I am cold or take one off when I am hot, because the amount of touch required would be more intense than dealing with the temperature. 
  • Temperature is another big issue, especially of food. I let cooked foods cool until they are barely warmer than room temperature to begin eating, and take cold foods out of the fridge an hour or two before eating so they can warm up to room temperature. I love hot tea, but part of what I love is holding the hot cup in my hands and absorbing the warmth (my hands and feet are usually cold) while waiting to drink it.
  • And I put on socks before getting out of bed in the morning (if I wasn’t wearing some all night) to avoid the shock of the cold (carpeted) floor piercing through my entire body like being electrocuted.
  • Showers are a full-body, overwhelming experience, with water banging off of every bit of my skin nonstop, if the humidity gets too high I will have a panic attack and have to get out early, and the temperature change getting in and out is intense. I turn the heat (which is never high to start with) down slowly just before I’m done to help me adjust to my impending future temperature, and after the water is off I pull the curtain back just a crack to let a little outside air in to likewise help me get used to it, and open that slowly as I adjust so as to avoid hyperventilating, which I will do if confronted with a sudden, full-body, bare-skin temperature shock.
  • Even with comfortable clothing on, I am consciously aware of their presence against my skin at all times, all day and night. I can never forget about them because every movement grabs my attention. When I move my arm, the sleeve brushes across my skin and tugs the torso which pulls on the other sleeve, and tiny lightning bolts shoot through my body from every bit of skin that the fabric touches. As I walk, the movement of the pants or skirt against my legs and around my waist produces hundreds of little shocks, the shirt moves as I swing my arms and hair brushes against my shoulders and neck if it was not tightly enough bound.
  • That is what I consider comfortable clothing. I don’t go in for fashion. When I find something I can tolerate, often soft cottons, I keep it till it is worn out. When I do have to replace something, I prefer to buy used clothes because they have been washed more so they are softer and less irritating to my skin.
  • Clothes shopping is a nightmare (and rare) because it involves so many changes of clothes, wearing clothes with starches that irritate my skin, don’t fit right, or that have a cut that hits me in the wrong place, etc. in addition to the cacophony of things to look at in the store and people moving around and music over the loudspeaker and fluorescent lights and too many decisions to make on top of everything else. I have sometimes gone through all of that and still left the store in a panic attack, empty-handed. And sometimes I have waited for months for something I needed until my mom came to town so we could go together because we have a two-person system that helps minimize some of the overwhelm. As a teenager, we were close enough to the same size that she could do a lot of my clothes shopping without me there. I loved that.
  • Since I’ve written previously about my experience in stores, I won’t go into that much here. I’ll just reiterate that I hate stores and shopping in all forms. Even online, which I am grateful for because it reduces much of the sensory experience, but there are usually too many things on the screen screaming for my attention that I get overwhelmed with that, too.
  • Every time a webpage loads or refreshes, I have to close my eyes briefly because the sudden change on the screen hurts my brain.
  • Action movies, with their fast-paced cuts between scenes, lots of movement on screen, and often high-contrast color palates, likewise hurt by brain and sometimes make me nauseated. IMAX movies are impossible to get through without getting sick. Video and computer games are too much for me to deal with, featuring brightly colored objects flashing randomly, sounds that I can’t identify where they are coming from, and some especially torturous ones move the view continuously to simulate a first-person-perspective.
  • Watching anything move can be a trial, whether it is the landscape going by in a car or a flag waving in the breeze. Even watching someone’s hands while they are talking will make me nauseated if I’m already feeling susceptible. I’ve been motion sick in every type of motorized conveyance that I’ve ever been in—car, bus, train, airplane, helicopter, boat, etc. But not on horses. Maybe I felt more attuned to them. Not sure. 
  • I get a rash from just about every skin care product, lotion, soap, deodorant, and detergent on the market. I have to find ones that are the most natural with no additives, no perfumes, practically no ingredients, that exist. As a baby, it took my parents a long time to find detergent to wash my clothes in, and had to repeat that fiasco when the product went off the market twelve years later. When I find a product I can tolerate, I don’t change. The starch in new clothes can do the same; another reason to avoid new clothes.
  • Cooking is also a minefield of touch sensations. For example, anytime food touches me, even if it didn’t actually get any food on me, I have to rinse off the feeling of it touching me and then dry off the feeling of the water.
  • Restaurants are almost as bad as stores, for many of the same reasons. The next time you are in a restaurant, take a few minutes to notice how many different sounds there are around you. Cups being put down on tables, knives and forks hitting each other and plates, the wait staff’s footsteps, plates being slid against the table, conversations at every booth, dings and beeps from cell phones, kids squealing or laughing or screaming, babies banging a toy against the table or high chair, sounds from the kitchen, possibly even TVs overhead and probably loud music—I can’t filter out any of that. ANY of it. It is always there, it never fades into “background noise.” You probably don’t even notice most of it and I can’t NOT notice any of it. And that is just the soundscape. There is also the many colors and shapes of the decor and the smells from dozens of different foods and the feel of the booth or chair against my legs and the texture of the table and the temperature of the room and the flavors of the foods and the chance of something being described as “mild” still being too spicy for me and there are often lights above each and every booth and having to talk to the waiter, and above all of those things clamoring for my undivided attention, I’m trying to listen to you.
  • Some people seek out coffee shops precisely because the many sounds blur together and become white noise to them. For me, each one pierces my nervous system individually and it feels like hundreds of arrows shooting into me.
  • Also painfully intense are neon colors, which pull my attention like a moth to the flame, and burn into my eyes just as surely. They show up in peoples’ clothing, open signs in store windows that I drive past, advertisements on the side of the road, and price stickers throughout stores, but never in nature.

These are just a few of the things that I have to navigate consciously, most on a daily basis, draining my energy for other things. Perhaps you identify with some of this, perhaps none of it is familiar.

I am learning that many things that are huge issues for me aren’t even noticed by the majority of people. Clothing tags, makeup, jewelry, and even a light, gentle touch from a loved one, are intolerable for me. I have wondered for years how people can have a conversation while there is a TV on in the background, because I simply cannot—cannot—make out both things at once, and neither can fade into background noise, either. The sounds morph into a garbled mix of the two that I can neither understand nor ignore.

Yet I am learning that my reactions to seemingly small stimuli are not signs that I am weird or broken or messed up or crazy, but defense mechanisms trying to protect an overwrought nervous system from further damage.

Dr. Heller explains, “If a spider crawls up your arm or you smell smoke, your alarm system goes off. The sympathetic branch of the autonomic nervous system in the brain expends energy to arouse you, and stress hormones, like adrenaline, are released into the bloodstream to prepare you to flee or fight; your heart rate accelerates, your breathing quickens, your palms sweat, your legs stiffen, your hands clench, and your blood rushes from your gut to your heart and lungs (thus the sinking feeling in your stomach when you’re afraid). When the threat is past, the parasympathetic branch of the autonomic nervous system kicks in and calms you back to baseline.”

“But the automatic pilot of the sensory defensive’s nervous system is calibrated at a faster speed (breathing, heart rate). Like the fire alarm falsely tripped by boiling water, their nervous system misperceives certain harmless sensations as dangerous…Behaving as they were designed, their bodies respond as if their very survival were at stake. In preparation to defend against the primal threat, stress chemicals course through the bloodstream, causing an explosion of discomforting sensations—racing heart, knotted stomach, tight chest—and an outpouring of fear emotions from which the person does not easily recover. In self-protection, they may leave the lunch date early or snap at the waiter, unwittingly reacting out of proportion to the situation but in proportion to a brain that perceives danger.”

Looking back now, I am realizing how much that constant feeling of danger has affected major life choices without my even realizing it. I have quit jobs I loved because I could no longer tolerate the environment I was working in. I’ve rejected job offers and not even applied to others I wanted for the same reasons. I dropped out of graduate school halfway through, largely because I couldn’t deal with the setting. Although I chalked these decisions up to other things, those explanations never felt quite right to me—or at least not complete—yet “I don’t like it” didn’t seem a good enough reason so I had to over-emphasize other reasons.

I have been blaming my social difficulties solely on my autism, but autistic people are perfectly capable of learning social interactions, we just go about it analytically instead of intuitively, which takes longer. But I could have learned faster, earlier, and better, if I had felt able to handle being in more social situations instead of hiding at home, unable to stand the thought of an evening out.

I have damaged relationships and pushed away friends and potential friends because all my energy was being drained defending myself against the constant barrage of small attacks from the world around me and I had none left to be nice to people who liked me despite my many quirks.

That energy suck also led to several complete, life-crushing burnouts that left me non-functional for increasingly long periods. So many things in my life, big and small, have been ruled by my sensory issues and I was hardly aware of it, and certainly not aware of the extent to which it has affected my life. 

I am only now beginning to talk about these things in more specific terms than “I don’t like it.” Until recently, I didn’t have the vocabulary or the understanding to be able to describe what I was feeling inside. I’ve been laughed at many times for complaining that ice cream is too cold, but when I was five, is there really anything else I could have said besides “it’s cold”? Yet, as I grew up, I never learned better ways to describe my discomfort.

It wasn’t something anyone else talked about, I was not encouraged to describe my feelings, experiences, or what it was that I didn’t like about something, so my complaint remained, largely, “I don’t like it.” It wasn’t until I started therapy after my most recent burnout that I started talking about feelings, and it wasn’t until a year into that therapy that I didn’t feel super self-conscious about it every single time.

Describing my emotions and the way my body feels physically are not quite the same thing, but the one did prepare me for the other. Reading this book, I am being introduced to a new way of paying attention to individual sensory reactions to each stimulus in order to notice specifically what is affecting me and in what ways.

Some sensory issues were obvious, but It hasn’t always been easy to tease apart what is a genuine sensory issue from what is a personal preference. Do I not like something just because I don’t like it, or is there more going on? Am I having a consistent, physical reaction to the same stimulus in a wide variety of settings?

I’m figuring that out a little more every day. Here is an overview of what I’ve learned so far about each of my own senses. You’ll notice that there are more than five senses here. Apparently, there are many ways the body processes information about the world beyond the simplistic version we learned as children.

  • Touch:  Light touch, like air on my skin, a stray hair, pants or skirts lightly hitting my legs, even one of my own fingers accidentally tapping another, drives me bonkers. It sends a shock through my body and I have to rub the area hard to rub out the feeling of the touch before life can continue. Deep, firm touch, on the other hand, I crave. Holding exercise weights, my weighted lap blanket, when I get an X-ray and they put that led blanket on me—ahhh, that’s relaxation!
  • Sounds:  Sudden sounds, regardless of volume, make my whole body clench up inside and not let go. Loud sounds startle me to the point that it takes several minutes for my heart rate to begin to slow down. Also, anything that rustles or crinkles, like potato chip bags and jackets that swoosh when you move and many types of plastic packaging, grate on my nerves like nails on a chalkboard. Gentle, soothing classical music or nature sounds like wind in the trees, rain falling, or a river flowing, help me relax.
  • Lights:  I do better in dim than bright lights, functioning comfortably in lower light levels than most people can see in, but I don’t necessarily need the light to be dim if it is natural sunlight. Most artificial lights, with the possible exception of incandescent and full spectrum lights, make it harder to read and I end up having to re-read sections over and over because I don’t make out the letters correctly. They affect my depth perception, make me more susceptible to motion sickness, make my stomach cramp up in knots, and make me feel agitated, irritable, and on edge. Fluorescents especially make me feel more aggressive and I am more likely to act rashly or say something hurtful in that lighting because I have no energy left to think about consequences or care about how someone else feels; I am trying to fight back the ice pick that is piercing my skull. If I remain subjected to those damned fluorescents for more than an hour or so, this will turn into a multi-day migraine.
  • Oral:  I don’t have many texture-based food preferences, except that I avoid the light-creamy texture of things like sour cream or mousse. I do appreciate a good crunchy food now and then. And I can handle only mildly spicy foods like hot sauce. Most of my oral sensitivity revolves around having anything in my mouth that isn’t there to eat. The toothbrush, for example. Or a dentist’s fingers and instruments. It takes tremendous willpower to brush my teeth because I keep gagging, and I have to psych myself up for dentist visits. And there was a period of several years in my teens when I fought with my mom daily over using silverware to eat. 
  • Smell: Artificial perfumes of all kinds make me either choke or feel nauseated. That goes for scents marketed as perfumes as well as the perfume aisle in the grocery store—that’s what I call the cleaning products aisle, which I can smell from three aisles over. And every Walmart uses the same kind of cleaning product to mop their floors and which I can usually smell upon walking in and then I have to walk right back out or I will literally throw up.
  • Vestibular: This is your perception of spacial orientation and balance. I’ve always thought of myself as having good balance, and I’ve only gotten vertigo once or twice in my life, but I can get motion sick on—or looking at—anything that moves. Reading in the car for just a few seconds will make me nauseated for hours. As the driver, I’m usually okay unless it is a windy road, in which case I take it slow and stop for breaks often. I learned a trick from an acrobatic pilot to calm my stomach in extreme situations, like flying, but that involves greasy meals and preplanning and I don’t like to use it much.
  • Proprioception:  This is your awareness of your body in space, such as how you can close your eyes and still touch your knee and know where your right foot and your left hand are, etc. I never thought about this one before, but apparently mine is pretty poor. I frequently run into the sides of doorways and clip the edges of furniture way too much for it to be a mistake or miscalculation, and I’m not clumsy in other ways, like dropping things. I have chalked this up to visual and depth perception issues, but they didn’t quite explain it, because I can close my eyes in a familiar setting and reach out my hand and find the edge of the bed or couch precisely where I expect it to be, but if I remove my hand and try to walk past it I will still bump into it. That tells me it is not a matter of vision or even memory, rather I am not accurately processing where my body is in space. This sense may also have something to do with why I like deep touch and weight on me, but it is specifically pressure I want, not compression. Tight things are painful, like most leggings, nylons, tights, and bras.
  • Temperature awareness:  I can deal with gradual changes of temperature in my environment, and so have acclimatized to seasonal changes better in van life than in a climate controlled house, but sudden temperature changes are rough. Getting out of warm blankets in the morning is a trial, not just because I’m comfy but because it feels like my body is being dumped into ice water and I can’t function for several minutes while waiting for the frozen limbs sensation to wear off and my breathing to stabilize. In the summer, when many shops have the air conditioning blasting, walking inside is like geting a brain freeze through my whole body.

Learning to sort out and identify these details is critical for me to do sooner rather than later, because my sensory issues are only getting worse as I am getting older. Some days and weeks and months are better, and some worse, but the overall trend has been a deterioration.

My nervous system is like an open wound that keeps getting scratched and infected, day after day, year after year, so instead of healing, it only gets more inflamed. I need it to heal.

For most of my life, I’ve been able to function just well enough that I’ve blamed myself for not doing better. I’ve thought that if I just tried harder I could get over it, deal with it, handle it like everyone else. That I’m being selfish, too picky, too sensitive, too idealistic, too judgmental, and at the same time not good enough, not disciplined enough, not strong enough, that I can’t deal with things. But the truth is that my ability to put myself in an intolerable situation and endure it is incredible. I have huge pain tolerance and enormous self-discipline, developed out of forcing myself to do, learn, and achieve at a high level while under the constant pain of the slings and arrows of this outrageous fortune. And I have been blaming myself for decades that even that isn’t enough.

Because I have always assumed that most people experience the world pretty much the way I do, so if other people feel all of these things and still cope with it so well that they can hold down jobs for years and go to concerts and don’t startle when the TV program switches to a commercial, it must be my fault that I’m not handling things well enough.

As I grew up, I learned to hide my outward reactions to a large extent, except of course when startled by something like lights being flipped on or when it all got too much to cope with anymore. I thought that denying what I was feeling was a normal part of growing up, because most of the adults around me didn’t look like they were bothered by the things I was bothered by. 

So I learned to mentally gear up for activities and put myself through them the way some people put themselves through a weeklong visit from a judgmental mother-in-law. Sure, you could probably grit your teeth and not snap back “well then you clean the oven if my cleaning isn’t good enough for you” but it would take tremendous self-control and a lot of tongue biting and you’d probably complain a lot when she was out of earshot and need a vacation as soon as she left. That is what an average evening at someone else’s “normal” house is like for me. Even when I like the people! 

All of these minor traumas to my nervous system build up day by day until my body can’t cope any more and I burnout. I have healed quite a bit from the last major burnout, yet my ability to put myself back in those situations that caused the pain is decreasing, because smaller and smaller issues have been affecting me more and more with each burnout.

As far as I can tell, I have three options at this point:

  1. Force myself back into a “normal life” and deal with the effects until I burnout again, proving that I learned nothing from the last few run-throughs of this scenario. What’s the definition of an idiot?
  2. Continue down my current path, hiding from more and more parts of life until I gradually become a crazy hermit, dying young and alone of a stress-induced illness.
  3. Choose to accept that my nervous system is more sensitive to external stimuli than most and look for solutions, treatments, therapies, counseling, alternate career paths, meditation, anything that will help me cope with and enjoy the life that I have and stop beating myself up for not having a different life.

I choose option three. There is hope for treatment, claims Dr. Heller. Her book describes a number of therapies and techniques, both simple and expensive, that I can do myself or seek professional assistance with.

These treatments seem to revolve around re-training the nervous system to respond more appropriately to external stimuli. I’m not quite sure yet how that works, but am intrigued and want to try. Because just masking, coping, and enduring stimuli is ultimately is self-defeating.

While she is careful to point out that my defensiveness will not vanish, she claims it can be much more manageable. Right now, any improvement would be a blessing.

Because I have an adventurous streak. At times when I was feeling better, I’ve gone skydiving and ridden horses and flown airplanes. Right now, I’d count it a victory just to go hiking occasionally (but the wind on my skin and grass brushing my legs!), go dancing with friends (but the music and people touching my hands!), and I’ve wanted to try scuba diving since I was a teenager (but the feel of water and the cold!).

Many times on my Journey I have wanted to try something that was being advertised locally, like inner tubing down a river in Montana or rock climbing in the national parks or go out to an event with friends, but I shudder at the very thought and hold myself back because I know it will take days if not weeks to recover, and there is a high likelihood I won’t even get through it or enjoy it if I do, so why bother?

Also, they almost all require more money than I have, but if I weren’t so sensitive to every touch, sound, and movement, I could easily earn the money to pay for them and to live a better life in general.

For now, a better life includes wide-brimmed hats and sunglasses to block light and, most recently, the addition of purple earphones to try to block out sounds in museums and libraries and grocery stores. I’ve held back on that last one for a long time because I didn’t want to look too eccentric or weird, but I’ve given up caring very much about societal expectations in favor of taking care of my nervous system.

A better life also includes soothing my insecurities that chant at me that I am being picky, selfish, stubborn, or counter-culture when I ask someone to turn the lights off or down, or turn off the TV that no one is watching, or decline an invitation to go somewhere that they think is so much fun. Now, I chant right back at myself that I am simply protecting my nervous system from damage.

That’s my life. Protecting my nervous system from the world.

Sigh.

I feel like this new insight into my body and mind is just as ground-breaking and life-altering as was my autism revelation, with one big difference. While learning I am autistic prompted a wide range of emotional reactions, the longest lasting of those has been gratitude. Gratitude to finally understand myself.

Learning more about my sensory issues has prompted a similar range of emotions, however the strongest of these has been grief. Grief at the many things I have wanted to do and passed up because I could not tolerate living in my own body. 

Likewise, many of the things that I like most about myself—my highly logical brain, my problem-solving abilities, my creativity—are direct results of the autistic wiring of my brain.

Yet many of the things about myself that I like the least—having panic attacks in public places, avoiding activities I want to do, distancing myself from friends—are direct results of the sensitive wiring of my nervous system.

Acknowledging that, acknowledging what I need, has been difficult, but I am (gradually) coming to terms with it. Probably the most difficult part of this has been acknowledging that this is not simply something I will recover from with a couple more years of rest and soul-searching, and then be able to go on with my previous life. Even the life I thought of as fully functional before was, and has always been, a state of high stress. Although I knew I was stressed out, and have been my whole life (ask my mom, she’ll testify) I attributed it to other causes and accepted that stressed out state as normal.

What if I didn’t have to force myself to function like that? How much more could I accomplish, how much more creative could I be, how much more caring and thoughtful and empathetic and and and…if I were at last comfortable in my own skin?

16,938 Miles • Glacier on Fire
17,855 Miles • Shakespeare in the Parks Presents: Othello 

5 thoughts on “17,315 Miles • Learning to Listen to My Body

  1. i had no idea … thank you so much for this illuminating writing—you are a wonderful writer. and you are triumphant in communicating to us your ongoing experience and how much you have overcome already in spite of all these difficulties. you are inspiring, and i hope that many others with your sensory difficulties discover this article, read it, and find inspiration. and i hope that “normal” people read this and come to some understanding of what autistic people are really dealing with. i had no idea … keep going on this treasure hunt! i look forward to further discoveries.
    thank you so much for the beautiful nick quote. yes—the water! with love.

  2. Thank you for sharing these very intimate insights in your journey of self-discovery. I feel this is a very important juncture for you. I’m rooting for your success and happiness with #3!

  3. i am not sure what to say or how to feel after reading this last post. I am in awe of what you have endured and accomplished through your life. i am simply amazed at you. you can certainly feel proud of your accomplishments and thank god for the oppertunity and ability to be able to find out all these things about yourself. I prey that you will continue to press forward with your journey of discovery. and write about it. yoou can help so many others who are in the same boat or not.

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