Hearing, Loss

It’s the late autumn of 2017, and I’m in Point Reyes Station, California for a two-week writers’ retreat. I was walking down a remote road, taking one of my regular strolls into town for supplies, a bit of exercise, and to take in the landscape, which was stunningly beautiful. The weather was nearly perfect, and being so removed from everything, cars and other pedestrians on the road were quite rare. I was alone and enjoying the movement and the environment.

The wind picked up a little and it whooshed deeply in my ears. You know the sound, the low thup-thup as the air pummels your earlobes. Maybe I hear it more than others because my ears are little on the bigger side, so they scoop up a bit more air.

Only something was off. The whooshing sound was there, but it was only coming in on the right side of my head. That was weird. I must have just happened to be facing in such a direction that the wind was hitting my head at that particular angle. So I checked.

I pivoted my head in different directions, while walking, while standing still, and nothing changed. I walked to different parts of the road with different landscape features; fewer trees, fewer houses, atop an incline, then toward the bottom. Still the same. I wasn’t hearing the wind in my right ear at all.

I snapped my fingers in both ears, and noticed no meaningful difference. I rubbed my finger along the surface of my earlobes and ear canals. In the left ear, I could hear the deep rubbing and rumbling sounds of the friction. In my right ear, I heard a faint and wispier sound, like something soft brushing on paper, at a distance.

I got out my headphones and attached them to my phone. I played some songs, and only listened through one earbud at a time. In the left ear, the full, rich sound came through that I had come to expect and enjoy from this particular pair of headphones. In my right, the bass and mids were, alarmingly, almost nonexistent, save for the high-frequency sounds of strings being scratched or plucked. All I heard were higher-end sounds, such as vocals, snares, and cymbals, only much tinnier, thinner, weaker.

Finally, I tried listening to a voicemail to see if I could hear a phone call. Again, the expected normal sound of the voice came through the phone’s little speaker into my left ear. Putting the phone up to my right ear, the voice sounded like it was coming from a tin can stuffed with cotton. I could hear the voice, but barely.

This was unmistakable. I wasn’t being paranoid. I had lost hearing in my right ear.

*

It’s the spring of 1994 in Absecon, New Jersey. I’m a 16-year-old junior in high school, in an exurban basement. It’s the house of one of my friends from marching band, Chris, and by way of some now-forgotten confluence of agreements and compromises, I have formed a crappy little band with him and two other friends; Chris on drums (talented thrash metal devotee), my best friend Rob on bass (had never played, and was borrowing my dad’s sort-of vintage bass guitar), me on lead guitar (I had no business being a lead guitarist but I could play chords and learn songs by ear relatively easily), and one guy I met through Chris, Corey, our lead vocalist, a kind of Axl Rose/grunge type (and who was tone deaf).

I told you it was a crappy band.

Nonetheless, it was my band, and my sole outlet for playing with a full set of musicians on a few songs I really liked (and some I really didn’t, but like I said, agreements and compromises). In the year or so we played together, I don’t know that we ever got to the point of being “good,” but we did manage to scrape together a handful of songs that we could enjoyably hack our way through. It was fun, at least some of the time.

On this occasion, we’ve been a band for a few months, and Corey and Chris have brought with them a friend of theirs, another guitarist who was straight from the Metallica/Megadeth school of metal. He had the requisite long hair and patchy teenage facial hair, including that mustache so many of those guys wore back then that usually signaled to me, for some reason, that I should be wary of them. I don’t remember his name, so let’s just call him “Patchy-stache.”

Apart from having some obviously advanced skills in metal lead guitar, Patchy-stache also brought with him something else we didn’t have: a giant-ass stack of huge amplifiers. For our usual rehearsals, I hauled back and forth my dad’s ancient Vox tube amp and a very small beginner’s amp that I’d gotten as a birthday present. Corey had a decent amp and PA for his vocals and occasional guitar playing. With what we had, we could barely hear ourselves over the astounding pound of Chris’s drums. That guy did not mess around behind that set. Usually I wore earplugs to protect my hearing, though not always. I was afraid it made me seem like a wuss.

So here we were in this small space, enclosed in concrete, with our usual collection of aspirationally loud shit. And now here’s Patchy-stache with his menacing obelisk. When he played through it, the obelisk emitted these teeth-rattling, piercing riffs, filled with stabbing licks and needle-like harmonics. It was painful. I of course didn’t know at the time that I was autistic, and already wired to be overwhelmed by stimuli like noise, and I didn’t have my earplugs in.

But I dared not show my discomfort. Checking for the other guys’ responses to this sonic assault, they seemed totally unfazed. I tried to indicate that this decibel level might be a bit too much with some humorous gesticulations of my ears exploding. It got me some smirks, but nothing else. It was really quite awful, but if there was one thing I found more excruciating than a storm of stimuli, it was the threat of social rejection, of being called out as lesser than the others. So I endured.

That night, I of course had ringing in my ears, like anyone would after a loud concert or something. But in addition to the ringing, there was also a low humming sound in my right ear, which happened to be the ear that was more directly facing Patchy-stache’s amps. It had clearly taken the brunt of the abuse.

The next day, the ringing had left both of my ears, but the hum remained. And it stayed. Forever.

*

I got used to it. At first it drove me nuts, and I had trouble sleeping. But I think it was only a few months before I’d learned to manage it. When there was sufficient ambient sound, the humming almost “turned off.” It weirdly just seemed to stop when there was enough sound around, not just fade to the background to become less noticeable. Whether that’s true or not is kind of academic, since tinnitus (the name of the condition) is mostly about the brain responding to a trauma. It’s a kind of illusion, but also not.

I’d learned to sleep by having music on at night, and that became a years-long habit regardless of my tinnitus. Throughout high school and college, most of my music listening happened in bed, where I’d fantasize scenarios in which I and my friends, all of us now musical virtuosos, were the ones performing these songs. I loved those fantasies. Now they just hurt, but explaining that is for another time.

Going into full adulthood (assuming I have actually done that), the hum became a total non-issue. It was always there, and I was aware of it, but it no longer troubled me at all. It was just part of the sound of being alive.

The right ear remained sensitive, however, so I’d shrink from blasts of sound directed at it. I’d had a few scares after, say, acting partners or overexcited children would inadvertently scream in my ear, causing me acute physical pain, but it always subsided and things went back to normal. And if the stabbing that Patchy-stache’s amps perpetrated on my ear had reduced my hearing at all, I couldn’t tell. For over two decades, I enjoyed the full scope of stereo sound, and as far as I could perceive, heard equally well out of both ears.

I didn’t appreciate it like I should have.

*

It’s the early autumn of 2017, a few weeks before I’d go to the writers’ retreat in California. My sinuses feel a little plugged up, which is not at all unusual for me. The usual pressure, the usual feeling of crud in the back of the throat, but it’s all very mild. I don’t even really notice it.

What I do notice one evening is my tinnitus. As I said, I have a baseline awareness of it as a matter of course, but I don’t often “notice” it. Well, now I did, a lot. The subtle hum was now blaring in my ear, several orders of magnitude louder than usual. Though this was unpleasant, it wasn’t totally surprising. Once every long while, some nasal or sinus related thing will make it sound a little more present in my head, and it always passes, returning to normal.

But jeez, this was really quite loud.

Days went by, and it wasn’t getting any better. If anything, it was getting worse. The sound was even louder, producing a sensation that was kind of like something pressing against my face. It felt like I had my head flat up against a some sort of enormous air compressor, subtly pushing into me. Or like the hum of all the electricity in the world was behind a wall to which my ear had been affixed with superglue.

My doctor said it was probably just a sinus infection affecting the existing tinnitus, and that would hopefully clear up with some antibiotics and decongestant. This felt particularly urgent, given that I was about to head off to California for my fortnight of writing. The last thing I wanted while trying to enjoy the peace of staring out over the San Andreas fault was to have the sublime state constantly interrupted by the jet engine in my head.

Unfortunately, by the time of my trip, the problem still persisted. The sinus treatment had no effect. I had some hope that maybe the shifting air pressure of my upcoming flights might sort of pop the problem out. But, of course, no. So I just had to cope.

A few days in, I noticed that I couldn’t hear the wind in my ear. A couple of days after that, the sound amplified yet again, out of nowhere, to the point that it physically hurt, causing me to experience a little vertigo. I saw a doctor in town and was prescribed some ear drops as a kind of shot in the dark, which also did not help.

Shortly after my return home, I saw a couple of specialists and had my brain scanned. The audiologist was the only one with any news, and it was not really news. I had indeed lost much of my ability to hear the low and middle frequencies of the sound spectrum in my right ear, and the tinnitus was my brain’s misguided attempt to investigate and compensate for the loss. Because they were happening at the level of the brain and inner ear, both were almost certainly permanent.

Both are permanent.

*

I have lost very little, really. I’m not by any means disabled. I’m not even a good candidate for a hearing aid. Someone whose pinky was cut off in an accident will struggle far more with their loss than I will have to with mine. With all the things that a human could suffer, with all the debilitating diseases, injuries, and accidents of fate that could befall a body, this doesn’t even approach the status of “big deal.”

But it’s still a loss, isn’t it? A little one. And sometimes little things matter a whole lot.

There is a space in the constellation of sound that one of my ears won’t ever experience again, not meaningfully. It’s just gone.

When I’m working on a recording for one of my songs, I’ll no longer be able to rely on my own senses to find the right blends and mixes of sounds that will bring the music to life. One side of my head will be missing way too much of it. It would be like directing a play with the lights dimmed on half the stage.

(I guess I could produce everything in mono. I mean, the Beatles did for a while.)

The other ear is fine. The full sonic palette remains available to it. But both ears, of course, will now only get worse as I age, because that’s what happens to human bodies. More colors will dry up or be scrubbed off my palette.

And then there’s the hum. Or rather, the droning. That’s a new reality that must be accepted as well. I became so accustomed to its first manifestation over the past 23 years, that I had the luxury of giving it almost no thought at all.

Now it’s a different story. This new, louder sound is always there. Even when I’m distracted by other sounds, ambient or otherwise, I remain aware of the droning. And because it pulses erratically in tone and intensity, it’s as though it’s not satisfied to merely exist. It’s like it wants my attention. It wants me to feel menaced by it.

It might yet become tolerable or even of negligible concern as the years go by. I kind of doubt it.

But I’m fine. As far as da-to-day obstacles, the hearing loss just means I’ll have to say “what?” more often, which will at times get a little frustrating for me and the people around me, and that’s really nothing. The droning, well, that will bother me exclusively.

Regardless of the relative severity (or lack thereof) of the loss, I’m grieving it. I’m sad and angry about the fact that I’ll never experience music and sound to the full, rich extent that I once did. That I so loved. That filled me up and saved me. Most of it is still there, but it will never be the same again. And I’m going to mourn that.


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Writing Without a Mask

Clearly, there’s something I’m not doing right.

It is my third full day at the writers’ refuge and I am researching my article’s topic, the muscles in my neck and shoulders simultaneously taut and compacted such that I find my range of motion constrained.

IMAG1268.jpgI am in a veritable paradise, with astounding natural beauty, a sublime and comfortable writing environment, surrounded by books and supplies and various corners and nooks into which I can settle and work my craft, smart and friendly people around who are both few in number and fully understanding of my need for solitude, but also interesting and enlightening when I do get into conversation with them, and two weeks to pursue this project in any way I please. Oh, and I am right now looking at a different tectonic plate than the one on which I stand. Seriously, it’s right there. Also, deer aren’t afraid of us, and they hang out and eat apples. Oh oh oh and there’s a hawk that flies around my part of the house, sometimes so close I can look into its eye.

And I’m lost. Whereas I had begun this retreat with a lot of enthusiasm for this project and eagerness to get it going, I’m now overwhelmed by the breadth of the topic, unsure of the degree of depth that is most appropriate, ignorant of the best practices for this kind of work, anxious about the unwise use of my time, and generally feeling beneath the task. I even think I broke the electric kettle in the kitchen.

I am being treated to more privilege than billions of people will ever experience, and here I am, angsty. I hope I at least get credit for recognizing the absurdity of my own hangups.

I know there is no right way to go about this. That’s really the point of this retreat, to give writers the space and time to take things at a pace and within a structure that suits the writers themselves. I’m so accustomed to stop-and-start times, specific formats and styles for particular written products, and an established approval process, that this freedom, this liberation, is bewildering.

But now that I think about it, I suspect that what’s really going on is very similar to the distinction I make between performing as an actor on stage in a play and giving a presentation on a real-world topic for my job. There is too much of me riding on it.

Let’s begin with the theatre/work-presentation distinction. Upon learning of my autism/Asperger’s diagnosis, many people who know me from my theatre life are in disbelief. How can I feel anti-social, afraid of human interaction, uncomfortable in crowds, and oversensitive to stimulation and also thrive on stage? It’s a perfectly reasonable question (though I bristle at the skepticism of my diagnosis that it implies), and one that took some time to for me to understand myself.

When I’m performing a role in a play, there is no question as to what I will talk about. My words are predetermined, and not just for what I will say, but when I will say it. The play will also have been blocked, meaning that where I am in space will also have been set and rehearsed well in advance. Through the rehearsal process, it will be determined how I will say all these words, how I will conduct myself physically, and even how I will imagine my character to have reached those various decisions. There is always room for change, iteration, adjustment, and depending on the production, sometimes even improvisation, but the structure is always there, and it is firm. Most importantly, I am not me. I am someone else. Not literally, of course, but there are sufficient layers between me and the audience (and even between me and my fellow actors on stage) that the excruciating discomforts associated with my autism are, if not wholly eliminated, sufficiently dampened. The role is a mask.

But take me out of the world of the performing arts, and into the world of speaking on behalf of an organization or a cause, and those layers are stripped away. If I am, for example, expected to give a talk about communications work, I know I will be utterly exposed. Not only can I not play a character (try as I might), but the “real me” must also lay bare whatever degree of expertise I have, or claim to have. “I’m Paul, and this is what I know.” My words, my physical comportment, my inflection, my gestures, and even the very contents of my brain are open to public scrutiny. There is no mask. That is unbearable.

So let’s apply this basic idea to writing, and, in a way, the dynamics flip, with two different areas of my life producing opposite results. As I mentioned, my writing for work is routinized with established formats and processes. As with a public presentation, I am the one producing the words, but I am rarely writing them in my own voice. In a very real sense, when I write press releases, emails to supporters, and newsletters, I am writing “in the character” of the institution I work for. I’m playing the role of my organization. My job title and the institution’s logo, they are my masks. Those layers are sufficient, once I am settled into the given employers’ needs, processes, and, importantly, voice.

Here at the refuge, I am attempting to write a long form magazine article on a topic of great interest to me. But I am not writing or “reporting” it in the voice of my institution, nor in the voice of the publication in which it will appear, as one might do with a straight-news newspaper article. With this project, the speaker is me. The facts I present, the sources I’ve chosen to mine, the people whose perspectives I’ve sought, the conversations and quotations I’ve initiated, the things I’ve chosen to omit or gloss over, and the conclusions reached, they’re all me, in my own voice. Whatever is wrong or unsatisfying or weak about the final product is a reflection of me, with no mask to hide behind. That, I tell you, is dizzying.

Now, one might then wonder, hey Paul, you seem to have no trouble opening every one of your precious little wounds and examining them in detail on this little blog of yours. Too true! And I’m not certain why this kind of writing that I’m doing right now doesn’t make me feel just as vulnerable. But I suspect it’s because I’m rather sure of the topic at hand, that being myself. Even if I’m completely deluded about what is going on within my own tempestuous morass of a psyche, there’s no one else in existence who can claim a greater level of expertise or comparably intimate knowledge. There is relative safety in that. Whatever the reason, exposing my inner thoughts and struggles is far less perilous than claiming the authority to expound upon an external subject.

So perhaps a healthy approach, and even a more fruitful approach, is to lean into my own inclinations and preferences, and tackle the subject of this project through my own lens. In other words, rather than present facts and an argument impersonally, maybe I can chronicle my own experience of the subject as I absorb it, and recount for the reader my intellectual journey to better understand it. The cliché is that one ought to “write what you know,” but I really don’t know much. So maybe the best thing to do is to write what I am coming to know – of the project’s subject and of what it comes to mean to me personally.

Okay, maybe I can do that. Take it easy now, oh knotty neck muscles of mine. Let’s get a few deep breaths in. Let’s take in the vast scene of nature around us and indulge in its otherworldly peacefulness. Let’s let the brain soak up what it’s learning and let the new information bounce off the thoughts and values that are already there.

And then, let’s write.

(And pay for the kettle I broke.)

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A Sore Thumb, a New Face

I’m on a plane to California, about to spend two weeks at a refuge for writers, a retreat for which I was nominated by a colleague who had himself been a resident as part of a fellowship for writers in the freethought community.

Being selected for this wasn’t just a surprise. Certainly, I went through all the thoughts of “what an honor” and “what a wonderful opportunity,” and they are very sincerely felt. But my dominant attitude is, “Oh, dear, they’ve made a mistake.”

Wait, this isn’t the usual imposter-syndrome lament. Let me go at this sort of orthogonally. As I was preparing for this excursion, I figured I ought to get at least a couple of new shirts or pairs of pants, since so many of the nicer items in my already spare wardrobe are looking worse for wear. As poked around the men’s section, haplessly, I found myself fixed to an idea of what a “real writer” is supposed to look and dress like. It wasn’t a fully conscious thought, just something I became gradually aware that I was aiming for as I shopped. Despite the anxiety this caused me, whatever that writerly image is or was, I’m fairly certain I did not achieve it. I’ll come back to this is a bit.

This retreat will take place in what appears to be a big, gorgeous house in a ridiculously picturesque area of Southern California, overlooking a fault line I think, and yes, the weather is supposed to be heavenly while I’m there. Apart from a couple of formal meet-and-greet meals held by the proprietors, writers are otherwise left to themselves to work on whatever it is they’re working on. When not writing or sleeping, we’re encouraged to take advantage of the local restaurants, outdoor activities, and I think there’s even a tennis court.

I’ll be in residence with two other writers, selected, I assume, through different means, since my spot is specific to those writing about freethought and secularism. These two writers, my soon-to-be housemates, are very accomplished, particularly for their ages, as I suspect they are both a good decade younger than me, though that’s just a guess. One is an award-winning novelist, the other a journalist with bylines at prestigious outlets and publications. Me? I’ve written a whole lot of press releases and email newsletters. I have a personal blog that more or less no one reads. I have a blog for work where I round up news stories and make dumb jokes. That’s…kind of it. And I’m gonna be 40 soon! I mean, I also now host a podcast that is listened to by a few thousand people, but I was selected for this retreat well before that got started. So what am I doing here, on this plane, heading for this gorgeous place and joining these amazing people?

I’m not seeking validation. I mean, I usually am, but not here, not for this. I actually do think I’m a pretty good writer, so my discomfort and foreboding aren’t due doubts about my skills. I suck at many, many things — but I’m fairly sure I can write. 

But I also know I don’t have the resume, the credentials. For the vast majority of my public writing, there are several layers separating me from the material. I am writing in the voice of an institution, not my own. I am rarely writing in the first person, or from my own personal perspective at all, but from the point of view of an organization or one of its leaders. Even were I to grant that my work was uncommonly exemplary, it wouldn’t even begin to approach the prestige or cultural significance of what my fellow residents have achieved with their work. My predecessor for this fellowship who nominated me to succeed him is also incredibly accomplished. Holding a similar position to mine in his own organization, he has been a well known and highly respected leader, not just in secularism, but in political advocacy in general. He’s written books, academic articles, and has had a leading role in the advancement of the cause for which he fights. He’s not only qualified to be at a writers’ retreat like this, he’s overqualified and overdue for even greater honors.

Oh but hey, I’m kinda funny on Twitter!

Okay, well, they knew all of this when I was nominated and selected. And they didn’t hedge their invitation with anything like, “Well, you don’t quite have the pedigree we normally look for in our residents, but your friend seemed to think you might be worth a shot.” They were as warm and welcoming and excited about my arrival as they would be for anyone else. (Or at least they made it seem so, which is almost the same thing. As a parent, I know all too well the emotional and psychological cost of feigning enthusiasm.)

Remember the clothes shopping? Half-consciously, I was focused on looking the part of what I think they think a real writer is supposed to be. I didn’t want them to think of me as a weird outlier, an exception to their usual standards. Just as I have always done as an unknowing-autistic for all of my life, I was aiming to pass.

In attending this retreat, I am entering a world that is both aspirational and alien to me. I have always wanted to be taken seriously as a writer, a thinker, a creator. I’ve been on the cold street, looking in through the window at that society of the humanities, the creative class, the intellectuals, feeling simultaneously compelled to become one of them and certain that I could never, ever truly belong. So I never stood close enough to that window to fog up the glass. Someone might have noticed me.

In my mind, this is a world of people with deep, varied, and rich life experiences, who have achieved greatness in their fields, who have been intellectually and creatively ahead of the curve since toddlerhood. And now, they write thinkpieces and longform articles and nonfiction books and novels and poetry, and are rewarded with respect, admiration, income (I assume), a place in a network of brilliant and thoughtful people seeking to learn from and collaborate with each other, invitations to speaking engagements, conference panels, NPR interviews, generous fellowships, and, of course, retreats.

The stereotype in my head gets richer still! They love nature and trekking about in it. They also love the city and its unrelenting stimuli. They love fancy and eclectic restaurants. They also love — really love — dinner parties, where they drink and laugh and eat exotic food and swap stories of their adventures and the many, many books they’ve read.

I’m not one of these people (whom I’ve mostly made up). I don’t like dinner parties or almost any kind of party. I don’t like exotic or unfamiliar food. Hell, I don’t even really like eating at all. I wear silly T-shirts and ratty jeans, I read very slowly, and I am averse to being outdoors, what with the sun and bodies of water and insects and all that. My education has been modest and not culturally rich, and both my acting and nonprofit communications careers have been fairly static, owing in large part to my own reticence to do what is necessary to advance socially and professionally. I’m an awkward little man with Asperger’s and a lifetime of experience considering myself broken, failed from birth, only achieving what I have by dint of happenstance and people making exceptions for me. I am the sore thumb. Humiliation is my default expectation.

But here I am on this damn plane. Here I go, nonetheless, onto alien soil. My best hope would be to go there, to *be* there, as me, unapologetically, and perfectly content with myself as I am, without crossing the line into being ungenerous or unaccomodating. If I am truly not “like them,” then so be it. They asked me to come, and this is who they get. It’s not like I’m going to do any damage or hurt anyone’s feelings. I just might not be the usual thing, or what they expect.

I want it to be okay to jut out a bit, not like a sore thumb, but simply to stand out as a new face. The face of someone who thinks and acts a little differently and has something meaningful to offer. Someone who, if he’s not liked or appreciated, is okay with that too.

I suppose I’ll find out if this is possible, at least to some meaningful degree. I’ll enter that world in a few hours. I guess we’ll see what things look like at the other side of a fortnight.


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Autistic Alienation: Not as Simple as Intense Introversion

One thing about Asperger’s/autism that I think is hard for neurotypicals to understand, and is also hard for me to come to terms with, is that as an autistic person, my attitude toward socialization isn’t merely binary. The introversion instinct is incredibly strong, and it’s true that I can’t heal, rest, or reengergize without relative solitude. But that doesn’t mean I therefore never want human contact.

It gets even more complicated than that, though. If it were as simple as “I like to socialize a lot less than most people, but I do want to socialize a little,” that’d be relatively easy to manage. You just keep social interaction to a manageable level, whatever it happens to be For the individual. But here’s the thing: even human interaction that an aspie might affirmatively seek out is still fraught with discomfort, self-doubt, anxiety, and pain. It’s still exhausting, and sometimes dispiriting, unless it's particularly fulfilling in some way.

So when an introverted aspie is avoiding other members of his or her species, they may also be experiencing, at an atavistic, lizard-brain level, a longing for human contact, to feel assured that one still “belongs” in the tribe. And even when that validation is achieved in the most positive and affirming of scenarios, it’s still incredibly difficult.

This is the picture: Imagine a human being whose brain has developed differently than almost everyone they know. They may be incredibly intelligent or talented in some way or other (or maybe not!), and have a great deal of thoughts and feelings they desperately want to express and share. But the agony of submitting oneself to the evaluation of normal people, even in the most banal and benign circumstances, is often too much to bear, or at least too uncomfortable to make it worth the effort. When they do take the leap and try to mix in normal society, the energy drain is rapid, the stress is damaging, and the tiniest faux pas (real and imagined) is burned into their memories as scarring humiliation. So this human being, full of life and solitary, feels lonely, while determined to remain alone. Until the loneliness becomes too much, such that a new attempt is made.

I miss having a set of friends that I was comfortable with, that I could develop routines with, and rely on for that base-level validation that I was in the right species, that I had a tribe from which I was in no danger of being ejected. I have had that. A lifetime ago.

I don’t have that now, and most of my experiences after my life in professional theatre has been characterized by anxiety over being banished from whatever tribe to which I submitted myself, or else having no tribe at all, and cautiously yearning for one. (And not knowing that I was autistic in the first place.)

It’s not just that we want to be alone. But it’s the only way we know we can safely be.

Excruciating Information

A fellow autistic blogger whose work I deeply admire pointed me to this short little PSA video from the UK that she said was revelatory in how it reflected her own experience. And so it is for me.

Particularly when it comes to the Asperger’s part of the autism “spectrum,” I think people – including actual Aspies – tend to cling to the idea of social awkwardness and alienation as the defining traits. But using this stereotype as definitive ignores what I think is one of the prime causes of that awkwardness and alienation, and that’s the difficulty we have in processing stimuli with the same capacity and at the same rate neurotypicals, and that difficulty manifests not just temporally – it’s not that we just have to sit there and ponder for a few moments and then move on – but physiologically. It’s painful.

The example you’re most likely familiar with is that of the noisy, crowded room, say at a bar or a party, an environment that can be incredibly uncomfortable for many of us. I usually see it described in terms of the noise level and the variety of voices coming from all directions emitting sound. But that’s just one factor. There’s the visual, of course, as one is surrounded by faces and bodies and objects and movement and nonverbal expressions and cues. And there’s also the tactile, the feeling of one’s clothes, the floor beneath you, the furniture you may or may not have your weight on, the food you likely have strong aversions to, and quite especially the temperature. And that sound? It’s not just the decibels, but the information contained in the voices, what they’re actually saying in the chit chat, in the music blasting, and on and on.

That’s a lot of information to process all at once, creating palpable discomfort, anxiety, and misery in a context that demands a certain kind of relaxed behavior.

There are so many other ways this comes up in my life. I can’t for the life of me orient myself in space, for example, so whether we’re talking about driving directions to places I’ve been many times before, or just navigating the interior of a building with more than four rooms or so, I’m constantly bewildered. I can’t process that information at a rate that makes the directions useful, nor can I process the information without extreme discomfort and crippling anxiety, which only makes the processing harder.

If I get an email at work that is more than a few sentences, I know I will have to relax my brain and read it carefully a few times because too often I have replied or executed instructions based on a misreading of the text or with significant pieces of data missing from my comprehension. That screen full of words begins, in my eyes, as white noise, a garble of glyphs in pixels, especially if it’s part of a threaded conversation. And again, that doesn’t just spark confusion and compel me to take my time, it hurts, it’s dizzying. (So yes, when I read books, I’m pretty damn slow about it.)

So I understand this young girl in the video. That was me at that age. These otherwise innocuous, benign interactions that a person has throughout their day, these humdrum travels from point A to point B that nonetheless feel perilous, these unanswerable questions launched at you and meant as small talk, the torrent of trivialities that threaten to drown you even when you don’t know why you’re expected to care, the inadvertent offense or problem you cause as a result of your efforts to shield yourself. It’s too much. Even today, though I fake it much better than I did then, it’s too much.

The world obviously isn’t set up for autistic people to succeed. It’s a miracle so many of us have. And the thing is, I don’t think it would take so much for the rest of neurotypical society to give us a little space. If only it weren’t so excruciating for us to ask for it.

I Am Dreamcast (A Play)

This is an extremely short “play” I wrote in 1999. I recently rediscovered it in a folder of old projects, and it made me laugh. On the inside, because I don’t laugh out loud all that often.

Here it is, with a few tiny things cleaned up after a fresh reading, as I originally wrote it 18 years ago. Oh, if you don’t know, this is what a Dreamcast is/was. Enjoy.

I Am Dreamcast

A play by Paul Fidalgo

Blockbuster Video store, 1999.

PAUL, an employee, early 20s, and JUAN, the manager, late 20s, are behind the counter, working on scanning in VHS videotapes which are stacked up in various piles, or prepping new releases or some nonsense like that, putting tapes into cases and whatnot. We see them from behind the counter, which is upstage of them.

JUAN stops suddenly, straightens up, and says…

JUAN: I am Dreamcast.

PAUL: You are?

JUAN: I am Dreamcast.

PAUL: Really.

JUAN: You…

PAUL: Yes?

JUAN: You can play Crazy Taxi on me!

PAUL: My god.

JUAN: I am-

PAUL: Dreamcast.

JUAN: Yes, Dreamcast.

AMY, another employee, 20s, enters.

AMY: What’s with Juan?

PAUL: He thinks he’s a Sega Dreamcast.

AMY: What?

JUAN: I am Dreamcast.

PAUL: See?

AMY: Why?

PAUL: I don’t know. Maybe too much exposure to all these games.

JUAN: I have a 128-bit graphics processor.

PAUL: Yeah, you see what’s funny about that is that I don’t think he would actually know that.

AMY: Wow.

JUAN: I am normally retailed at $199.99.

PAUL: This is kind of cool.

JUAN: I am Dreamcast.

AMY: He’s just fooling.

PAUL: I don’t think so.

JUAN: Grrrrr!

PAUL: What?

JUAN: Grrrrr!

AMY: He’s growling.

PAUL: Why would the Dreamcast growl? I never thought of it as, you know, scary.

AMY: Well…

JUAN: Dreamcast!

AMY: Ssh! This is why I think he’s kidding.

PAUL: No, I think Juan believes the Dreamcast is a monster, that he is a monster.

JUAN: I am Dreamcast!

Enter CUSTOMER, approaches counter

CUSTOMER: Excuse me.

JUAN: I am Dreamcast.

CUSTOMER: What?

PAUL: Nothing.

AMY: Can I help you with something?

CUSTOMER: My kid wants this video game, um, Tony Hawk?

AMY: For which system?

JUAN: Dreamcast!

CUSTOMER: Um, no, the Nintendo one. N64.

PAUL: Yeah, Juan, Tony Hawk isn’t on the Dreamcast yet.

AMY: (To CUSTOMER) Let me see if we have it. (Types on computer.)

JUAN: Um.

PAUL: Yeah?

JUAN: Um.

AMY: Yes?

JUAN: Grrrr!

CUSTOMER: A monster! Run!

End

Immeasurable

I have lately discovered in myself a kind of sympathy with a certain flavor of religious belief and practice, which, when approached from a very particular angle, I find relatable, even laudable. To be clear, I don’t mean religion in the sense of unquestioning belief in absurd cosmological claims or even magical thinking about some silly “universal spirit” or what have you. This has more to do with things like yearning, reverence, discipline, peace, and one other thing.

That other thing, interestingly, is part and parcel with the very ideals I work to promote in my professional life advancing reason and secularism: Doubt.

It’s kind of a funny thing. I live a life positively drenched in doubt. My self-doubt is, of course, the stuff of legend, and it spills over into grave doubts about all manner of external things, from the intentions of others to the sustainability of human civilization. I’m just not so sure about any of it. No, that’s too flip. I deeply distrust all of it. Everything. It’s, as they say, crippling.

At the same time, I have a mind that strives for certainty. This is to be expected from someone with Asperger’s (which I only became aware of a few months ago), and true to the stereotype I grasp for recognizable patterns and hard-and-fast explanations for everything. Perhaps this was a primary factor as to why I found the secular-skeptic movement so appealing: Well at least I know those people are wrong!

This need for the concrete is, I think, a major reason as to why I soured on the arts about a decade ago. I didn’t feel like its benefits to humanity were sufficiently tangible. At the time I was making these considerations, things were very dark in American politics (which looks rosy compared to today), and I felt that all hands were needed on deck to fight back and make the world a better place. I did still believe that performing Shakespeare had the power to do some good, but that the effect I could have was too small, too localized. I needed to expand my do-gooder blast radius.

Politics, I thought, would bring concrete solutions, eventually. Successes there would do more than lift the spirits of a few upper-class theatre-goers; they would improve society as a whole, helping people who needed it, as opposed to just those who could afford a ticket to a play.

But I think I was missing something, something I couldn’t be expected to understand at that time in my life, at that age. I’m not sure I understand it now, but I do think I undervalued what I was doing at the time. But I couldn’t quantify it, I couldn’t see it. I doubted it.

I couldn’t live with that doubt. The irony of course is that I now utterly doubt the ability of politics and advocacy to make lasting positive change, given, you know, how things have shaken out.

But aside from the abysmal state of things in that particular arena, it remains that political advocacy is largely mechanical. Yes, of course, there is as much poetry as prose involved in the whole mess of politics and government, but all of that poetry is meant, in the end, to get some dials adjusted on the machinery of government; to get particular gears of society to move or speed up, and get others to slow or stop. Meaning can be measured.

I couldn’t measure what made a performance of Othello or As You Like It meaningful, just as I can’t measure the meaning of the songs I write and record, or even the meaning of these words. I have metrics for attention paid, surely, in clicks, downloads, listens, views, likes, shares, tweets, and all that. But there is no measuring the impact, no quantifying to what degree the world has gotten better as a result, if at all. Indeed, I have so little understanding of this that I often doubt the things I do have any meaning at all.

In the quantifiable world, the readings on the gauge are very grim. The wrong gears are moving, the right gears are being removed from the inner workings, and the dials are pointed in all the wrong directions. It is dark. And I realize this darkness is due to an emptiness, a void. It’s not a lack of good ideas or good campaign strategies. It’s a void in the human heart, a vacuum instead of open air. It is dark.

The thing about darkness, though, is that little lights become really freaking important. I’m directing a production of Into the Woods with the local university, and it might be great, or we might just eke out a passable showing by the skin of our teeth. But that’s not really the point. The point is that this group of young people are throwing their hearts and minds and energies into telling this beautiful story with this beautiful music that is full of joy and pain and fear and yearning. Whatever happens, I am certain that this show will be a little light in the dark. It already is. Before it’s even been performed, it’s already made the world a better place, made all those who have been a part of it, myself included, better people.

I can’t measure that. But only in this time of darkness do I realize how badly we need it anyway. How bad we’ve always needed it, and always will.

Here’s a thing I read recently by Dougald Hine that helped focus my thinking about this:

Art can teach us to live with uncertainty, to let go of our dreams of control. And art can hold open a space of ambiguity, refusing the binary choices with which we are often presented – not least, the choice between forced optimism and simple despair.

These are strange answers. For anyone in search of solutions, they will sound unsatisfying. But I don’t think it’s possible to endure the knowledge of the crises we face, unless you are able to draw on this other kind of knowledge and practice, whether you find it in art or religion or any other domain in which people have taken the liminal seriously, generation after generation. Because the role of ritual is not just to get you into the liminal, but to give you a chance of finding your way back.

If religion, for you, is something that is not about theological certainties or following the revealed will of the creator of the universe, but like art is about yearning, reverence, discipline, peace, and doubt, then I think I am beginning to understand that. I can’t take at all seriously any claims about some mystical being or force that has willed us into existence and interconnectedness. But I am interested in a way of thinking that yearns for this connection, that reveres the vastness of our knowledge and ignorance, that partakes in a discipline to explore and strive for this connection, that seeks and achieves moments of bliss, harmony, and peace in this practice, and that doubts every bit of it, so as to power the continuation of the cycle. Maybe that’s what faith is supposed to be about, or what it ought to be about anyway, having faith that there’s something to strive for. Against all evidence. 

This is what the arts, the humanities, are for. Not only their products, but the practice, the making, the discipline. That’s what’s holy about one more goddamned performance of a show I’ve been doing for a year. The ritual. This is what I think I missed all those years ago, or was not yet capable of understanding. It’s what I think I misunderstood about certain key aspects of religion, and what I suspect the vast majority of religious people misunderstand, or neglect, as well.

My Aspie brain struggles painfully with this. “Why bother” is the mantra of my subconscious mind whenever I even consider undertaking some effort in writing, music, or what have you, especially given that I am not making my living this way anymore. “To what end?” asks my brain. “What good will it do, for you or anyone else?”

Daunting, invigorating, and frustrating, the only response is that it is, in every sense of the word, immeasurable.


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