Running Dreams

I had my first running dream in quite some time yesterday. When the injury first happened, these types of dreams were more commonplace and I’d wake up and return to the disheartening reality of crutches or a boot. Six months later, I guess my subconscious tabled my identity as a runner and those types of scenes stopped cropping up. I’m guessing that yesterday’s big milestone of successfully sneaker walking in the woods at the park allowed the hopes and sparks of possible future running finally sneak their way back in again.

I’ve been running competitively for more than half my life, even considering the time off for all of the various injuries, so that vision of myself is nearly as cemented as my own name at this point and it’s painful and jarring to imagine it may not be something I’ll be able to enjoy again. The truth is, that fate is somewhat unknown at this point; with my degenerative connective tissue disorder, this ridiculously temperamental injury, and my overall increased propensity for injury over the past couple years, running may be entirely unfeasible or at least not recommended, and certainly would need to take on a different feel and intensity to remain a viable activity for me. I’m not in a position to even assess or decide yet since I’m still not healed enough to run, but I know it will be an important but difficult decision to face when the time comes.

With that said, my little trail excursion yesterday must have taken a key to this padlocked box with my running aspirations and loosened the lid to allow some of that pressurized passion to seep out and plant itself in my dreams. I was running. I was laughing and running along the deck of a ship, wildly swinging my arms and pumping my legs like a freed child at recess, running without restraint. An entire football team was chasing me and singing 80s pop hits while I hysterically and gleefully circumvented various obstacles along the decks. Interestingly, my left foot still seemed markedly hindered, as every hard corner I took, I’d hop twice on the right to avoid weight bearing on the left during the turn, then would regain an equal bipedal stride once I’d hit the straightaway. I woke up laughing at myself, instead of being instantly saddened by my still injured condition, as would have been the case months ago.

While I hate unknowns and hate waiting even more, I’ll continue to try to maintain hope but exercise the most patience I can bear to see how this foot heals and how my running future will look. I’m working hard to cultivate more balance in my self-image and find and nurture other interests that help me find fulfillment and purpose.

 

 

I’ll Never Be Ready for This Goodbye

Our family dog, John, is winding down and approaching the end of her life. She’s an unthinkably sweet, loyal yellow lab who has been a member of the family for nearly fourteen years. While she’ll always be the “family dog” in my mind, she’s been under my mom’s care since my parents split up about ten years ago and my sisters and I have all embarked on our own lives.

I remember getting John, although, although back then, we called her Rory, short for Arora. She’s a girl, yet has been called “John” for probably all but two of her years, after I decided that’s what she was to me and it stuck. We all started calling her John, or Johnathan when she’d get into some large pile of food and drag it to her “den”-a fort formed between the arms of the couches-and gobble it up. Trays of homemade granola bars, a family-size bag of blue corn tortilla chips, wrapped sandwiches from our lunch bags carelessly stored near the front door to grab on the way out: John is a natural-born scavenger and always a stealthy acquirer of human food. The more bites into a feast she would get, the faster her tail would wag, as if each morsel gave her windup toy tail a quarter turn.

John has always lived for pure joy and found love and delight in everything. She has such a command over true happiness that we’ve all always found her presence to be truly enriching. She loves the woods, retrieving sticks and swimming in the water, going for epic walks in Amethyst Brook Nature Area, and playing on the floor.

John has been a lap dog and a snuggler since the day my mom and sister brought her home. Of course, then, she was under twenty pounds, at least seven of which must have been loose and floppy fur and big feet to grow into. Now, at nearly sixty pounds, she still comes rushing over when one of us sits on the floor and forms a lap: she wants in, though, it’s more like on and over our whole bodies now.

When John was a puppy, I was a junior in high school, obsessed with running fast, getting good grades, and securing a prestigious college admissions spot. I remember nights in the study room, my parents heading up to bed while I sat in front of the computer screen, working on one of many assignments. Johnny, still Rory at the time, was a tiny puppy. She’d come ambling into the study to sniff and explore any crumbs I had dropped below me. As if a pull-toy dragged by a string from her nose, she’d wag and wiggle her way around the whole room directed by just her nose and imagination. Eventually, she’d paw at my shins, pushing my wheeled office chair back from the screen. Up, up! Moments later, she would be cradled in my arms, belly up, as I stroked her ears and gave up on work for the night. Like a baby, she would close her eyes and begin gently snoring, folding completely into my arms, her own muscles fast asleep.

Johnny and I bonded quickly. She liked my energy, my kid-like tendency toward play, my engagement with her on the floor or with toys, or running around the house as her mouse in a game of chase. She immediately earned and filled the perfect spot in our family and soon, it was nearly impossible to remember how it was we got along before her.

Nearly fourteen years later, John has seen and been part of many adventures, changes, heartaches, fights, milestones, and memories. Her companionship has help weather deep pain and sadness, loneliness and hurt. She’s been there in every ordinary day too, reminding us about the simplest gifts of daily life: the rising in the morning of your loved ones, the deliciousness of breakfast and the excitement of eating, the desire to play and explore outdoors. Her love for each of us never seems to tire or fade. She’s just as excited to see you after months of absence as she is when you return from the bathroom after showering; it’s always an enthusiastic reunion and a reminder that you’re special and not taken for granted. She reminds me, at least, that life is enjoyable, even in the mundane, and that happiness is found everywhere that family is.

As John’s health continues to rapidly decline, I know that day when the most painful goodbye to be spoken is coming. I tell myself I’m ready because I know it is her time and death is part of her mortal life, but it’s also painfully difficult to imagine her no longer being with us. She’s been a mainstay, a reliable constant in our ever-changing lives for nearly half of my life. When I think about Johnny dying, it calls to mind the many times my mom would bring her down on adventure-filled weekends to visit me in New York City.

I’d always beg my mom to stay longer and our goodbyes were always tearful; I clutched on to my mom’s tiny frame in an embrace I never wanted to end. As mom packed her last few things in the car and commanded Johnny to jump up into the back, I’d squeeze John’s neck and say, “take care of mama for me.” Through blurred eyes, I’d watch as my mom would drive completely out of sight, engulfed by the cars of outbound traffic, the whole time watching Johnny’s fixed gaze of my diminishing waving silhouette, her eyes saying, Come home with us. Why have you left, my friend? and mine saying Don’t go, Johnny. We will play this same silent dialogue as she leaves this world, my eyes begging her not to go. I will swallow the basketball-sized lump consuming my throat and feign a brave face that tells her it’s okay to let go and that she’s far surpassed her job here. This time, my eyes will need to reassure her that I will take care of mom for her, and relieve her of her biggest responsibility and honor in this world. I don’t know the extent to which she can read my mind, decipher my words, and understand my heart, but if I have one wish for John, it’s that I hope she knows she’s been the stable rock in our tumultuous lives, the ever-burning beacon of love, and the very friend each one of us has desperately needed each and every day she’s been here with us. While I adore Comet and am confident I’ll love other dogs in my life as well, Johnny will always occupy this very precious place in my heart, one that is entirely irreplaceable and one I will forever honor. For however many days we have left that are blessed with her presence, I hope they are filled with peace and her acceptance of all the gratitude we have for her.

 

John, I will never be ready to let you go. I can’t imagine how to say goodbye to you, but please, please know for as much as I will surely fall short, you’ve been far more than anything we ever dreamed you’d be. Please continue to watch over me as I grow up and I promise to keep your spirit alive, for I cannot help but conjure up the sweet image of your face whenever I hear the word “family.”

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Time

The weeks are starting to feel faster. A couple of months ago, on Sunday night, I’d start to get anxious about the impending week and how it would feel long, hard, and lonely. Then, I’d start to get anxious Sunday afternoon in anticipation of the Sunday evening routine and the impossible-to-ignore awareness that the weekend was almost over and the week would soon be upon us. Unlike some people, this dread isn’t about working or not liking my job; in fact, I’m blessed to love my job and I work some on weekends anyway, so weekends and weekdays are often not appreciably different in that way. Mostly, I think, I’d feel sad about being alone so long during each day, not getting a chance to see Ben, and fending off physical pain and depression in isolation.

I’m not so much feeling that way recently, which is a welcome development. I still cherish the weekend time and enjoy the companionship and the more relaxed vibe that characterizes our weekends together, but I’m doing better alone as well. I’d say the pleasant spring and summer weather is the main attributable factor: I’m so much happier when I’m not freezing and there is abundant sunshine to soak up outside. Although not wholly healed, my foot is also better, restoring much of my significantly compromised mobility from the end of the winter and the early spring. Both of these factors result in more outdoor time, which almost always mitigates my anxiety and lifts my mood. If I am completely immobile or stuck inside for weeks or months on end with injury or illness, one of my necessary “tools” to moderate my mental health is missing and so I feel unequipped and justifiably anxious that I won’t be able to handle it well. It’s somewhat like repairman being stripped of her ratchet set or drill but still getting called to a job. She knows she can improvise somewhat, but without some key tools, she would feel nervous and more doubtful of her command over the repair. Give her those tools back, and she’s ready to effectuate the repair with confidence.

In addition to improved weather, less foot pain, and more mobility, I’m excited about my life right now. This may be the first time I’ve truly felt this way in almost a year, when I decided to forego the prosthetics residency and found a job that suited me well. It’s a beautiful thing when, despite numerous and pervasive challenges, you can feel content, and even sparked by your everyday life. The addition of this new job, though undeniably adding responsibility and some amount of stress, is invigorating. I really like what I’m doing and who I’m working with so far and it’s a near-perfect complement to my other job in terms of its different demands, purpose, and focus. I can’t wait to learn more each day and discover ways that I can be helpful and fill obvious and also unanticipated voids and needs.

I’m also continuing to find satisfaction and better self-understanding and self-compassion through my journaling and blogging. Writing gives me time to think, grieve, appreciate, analyze, strategize, and inspire. It helps me dissect and digest some of the many thoughts and emotions swirling about my head on any given day, and it helps me connect with myself and the world. I write about being autistic, having sensory issues, trauma and PTSD, depression and anxiety and physical pain, but also I write about being human and my life and the world through my lenses. As much as I feel different and am different than most people in very obvious ways, it also helps me feel the same and understood, especially when others can relate to my experiences or challenges. I get brief tastes of being as human as I actually am, yet often fail to see from my mental space of “freakishness” and deep, almost metaphysical, loneliness.

Although my progress is never linear and these improvements don’t always feel relevant each day, it’s useful when I do recognize the trend has changed for the positive. Although that familiar swing of anxiety may catch me on Sunday night, I just need to remind myself that the week is really nothing to fear: not only am I fairly equipped to handle it and grow with it, I may even enjoy it.

 

Simple Joys: Shoes!

After nursing this foot injury and exercising every last muscle of patience in my body for six months, I finally had my breakthrough step yesterday: no crutches, scooter, wheelchair, or boot; two sneakered feet hitting the pavement. I was shocked, and slightly disheartened, by how strange and difficult it felt to freely move both ankles and walk unencumbered by a big, heavy, rigid plastic boot. I felt wobbly and unsteady, and yet so light. I told Ben the feeling could be modeled by making a stick figure out of uncooked spaghetti and then just dipping the ankles in boiling water, turning them into wiggly noodles. But that model would fail to capture the deepness and endurance of my smile. Like a baby, my whole body beamed while I walked. Although I can probably count the number of times I have cried from happiness on one hand (it’s just not a reaction I get with that emotion), tears of joy welled up as pain-free steps took me further down my road. It took nearly ten minutes of a slow, steady, somewhat braced gait to gain confidence in my stability and ability to walk without any accoutrements, and I didn’t want to overdo it, but by the time I had completed my loop and was back in the driveway, my body felt more like a graceful gazelle (or at least a well-adjusted deer) than a newborn fawn. My mind, however, retained all of the qualities of the newly birthed animal, full of wonder, thrill, pride, and elation. I lifted my arm triumphantly upon my arrival back inside, like when I would win something as a child.

And that’s exactly how I felt: like I won. I beat my mental demons telling me I’d never walk again without at least a boot, I beat the pessimistic prognosis from negative doctors, and I beat the intense anxiety I had preventing me from lacing up the shoes and trying for the past week or so, too afraid the pain would still be there or I’d set myself way back again on the road to healing. My smile lingered until bedtime and it cropped up a few times in the night too, when pain-free steps carried me to the bathroom. I feel good this morning as well; it doesn’t feel like yesterday’s short excursion see me back!

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I’m not out of the woods yet and I still have a long way to go towards full recovery, but these literal steps were a huge figurative one. At physical therapy the other day, we measured the atrophy in my calf. We compared it bilaterally (to my right leg) and also to my measurements back in February when I first went, before the orthopedist told me I needed to be fully non-weight-bearing. Compared to its original circumference, my calf has shrunk almost 3 centimeters, which is more than an inch. It’s also about an inch smaller than the healthy right leg. Most striking was the change in ankle size (and corresponding strength and stability). Compounded with my SPD-induced poor proprioception and balance and my connective tissue disorder-related joint wobbliness and instability, I have a lot of work to do to rehabilitate this ankle and restore safety and function. Yesterday, I finally got to start. Since I wasn’t cleared to do any single-leg work on that side, I haven’t been able to even attempt many strengthening exercises, let alone stabilizing ones. It’ll be a slow process, with bumps and setbacks along the way I’m sure, but this hurdle I’ve cleared fills me with so much more hope, confidence, and genuine happiness that I think it restored my bone-dry patience tank enough that I’ve got the mindset and mental fortitude to be positive and patient, the two critical ingredients to get me where I want to be as quickly and healthfully as possible.

 

Growing and Expanding

I got the job! The past few days have been quite busy so I have sacrificed my writing time to prioritize my other obligations, but I’m excited nonetheless. Like most people, but probably more so, I stumble and struggle through transitions. My goal is always to navigate any change as smoothly as possible but to be gentle with myself and forgiving of my stress and strain as I learn how to contort my schedule and mindset to adopt new responsibilities and patterns. Truthfully, change breeds stress, which makes me irritable as it throws me off my precarious point of balance, even when it’s a desired change. Ironing out the kinks takes a few days or weeks as I learn not only the new job tasks, but also the schedule adjustments that work best for me. I’m robotic in nature, so much so that the precision with which I do the same things everyday unaided by a clock could beat out any sundial and most modern timepieces. Therefore, mentally and physically throwing new activities into the mix to incorporate is like shoving whole puzzle pieces into a wholly formed puzzle, with no gaps remaining. It’s only after a few days of shoving them in that the buckling they initiated eases and the pieces flow together like tectonic plates on the lithosphere floating more mobile-y on the molten asthenosphere below, opening gaps to welcome on the new segments. Although while the stresses build and the pieces fight incorporation, it can feel like things progress as slowly as they would on the geologic time scale, melting the resistance to allow acceptance does come. I just have to ride out the challenge in the interim; the good news is that it’s when things aren’t static (and new pieces are forced in) that we grow. And ultimately, growth is what I always want to chase: a mindset and path enriched with lifelong learning.

Growth is never linear, and it’s also not planar. I view myself like a tree; each branch represents different facets of learning with buds and eventual leaves as my interests, tasks, and cognitive mind grows. Each branch, twig, and leaf I develop offers shade, oxygen, or function to the world around me, a way to pay back and express my gratitude. The roots grow as well, representing self-improvement and growth, strengthening my foundation and reaching deeper depths within the rich soil. Sometimes new roots even sprout and stretch to connect with those of other trees, forging relationships and networking in the world around me. My trunk grows too, with each annual ring signifying the memories and experiences that ushered in the growth, telling a story of the conditions present in the year, the scars of previous years, and the years of bounty. It represents physical strength and fortitude.

This week, my tree is growing quickly. Leaves and branches are extending outward and upward to soak up more sunlight, which will be converted to usable knowledge, energy, and emotional growth. It takes the few adjustment days or weeks for my roots to catch up and support the added breadth and load of my outward structure, but when the roots do spring forth, they will carry opportunities to reach that especially nutrient-rich soil and feed my tree with the sweet satisfying elixir of love, happiness, connection, and fulfillment.

The new job I’m adding onto my current position offers me the opportunity to connect with more people and have a meaningful impact on my own life and the lives of many others as well. In this way, through the combination of the jobs, I’ll get to continually feed my intellectual, emotional, and social needs, and foster an environment for a healthier, heartier, beautiful tree.

 

Hot

It’s 8:18am and already 84 degrees. Many people hate it, but I love summer weather, up to about 100 degrees, where my body’s desire to melt kicks in and the sweltering temperatures are no longer invigorating but rather depleting. Maybe the fact that I’m a late July birth, my poor mom suffocating in her pregnant state in stifling July air, programmed my DNA to enjoy summer weather. I’ve mentioned before that I thrive on the Sun; my body and mind are like solar panels, restored by radiant energy. It seems to evaporate some of the mental and physical pain that normally colludes my mood and must be contended with as I soldier through the demands of my daily life. The added energy in my fuel cell and the hot sticky summer nights are the only significant challenges the summer weather imposes on me: Wrestling with my pervasive insomnia is exacerbated as I toss and turn with restlessness and discomfort. I must be cold to fall asleep. In the winter, I open the windows. There’s no equivalently viable option in the summer and yet my body longs to be that chilled.
I remember hating the sticky July weather as a teenager because my priority far above all others was running, fast and long, and that is considerably less comfortable and hindered on extremely hot and humid summer days, the ones that get everyone making weather small talk at each interaction. Today’s priorities are different; happiness and a sense of comprehensive wellbeing top the list, and for me, summer weather seems to usher in these sometimes-elusive, yet precious, feelings.
So today, it’s particularly easy to feel grateful and happy, and I’ll take it. Things in my corner have been trying lately, so it’s nice to ride the wave of goodness while it’s here, acknowledging its blessing and relishing in the genuine joy it carries.

Keeping Things in Perspective

Depressing. That’s the single word I’d use to describe yesterday’s medical appointment. When I saw him a few weeks ago, although I also received what could be considered unfavorable diagnoses, the appointment was couched in more hope, a possibility of answers and treatment. This time, the diagnoses and their ramifications hung naked, with no silver lining disguise. By definition, chronic illnesses or disorders persist; they do not resolve and many, by their very nature, do not have cures or effective treatment. It’s more about managing the symptoms, mitigating them if lucky, and attaining the highest quality of life possible. On good days, when wearing positive attitude rose-colored glasses, this feels like enough, a pill, though big and uncomfortable, is possible to swallow. On other “weaker” days when the pain is just too obnoxiously loud to be ignored, the sunny attitude is stripped away, leaving what actually remains, the somber outcome, the harsh reality. Most weeks are populated by both emotional responses, although in the weeks that are especially peppered with more excruciating and frequently debilitating symptoms, the balance tips in favor of viewing the bleak outlook with the pessimism that it rightly warrants.

The reality and prognosis painted in yesterday’s appointment was particularly disheartening because the first appointment presented the vague description of my health problems in sort of an intangible dotted outline of what “could” (but hopefully wouldn’t) be. Yesterday, the outline was traced in permanent black marker, with all the gaps and white spaces filled in with distressingly boldly somber colors. I left feeling unusual clarity and unusual hopelessness and sadness. Maybe it was the unrelenting rain and March-like temperatures despite the calendar’s insistence that it’s early June, but I felt literally and figuratively cold, wet, and despondent. I couldn’t even form words in my head, just a feeling of endless grayness, swirling around a vacant lot.

It’s easier to imagine a more optimistic picture when things are presented hypothetically. When diagnostic tests objectively present undeniable data that solidify the hypothetical into reality, the important keystone maintaining that hope is removed, and it all comes crumbling down. Although it’s always possible to view the same situation with a different (and more upbeat) attitude, in the former pre-information stage, it’s a genuine optimism, and in the latter, it is feigned, which takes endurance to uphold.

I’ve faced many disappointments and challenges over the years that I was able to overcome or at least tolerate as my new “normal,” like absorbing a small ball of black clay into the multi-colored amorphous blob representing my existence. At first, it adheres to the surface, marring the appearance with an unsightly blemish, but after a few days and continually rolling, folding, and spreading, the blemish is adopted and blended in to the whole. I have built a fortress to shield my flame of persistence and hope from the resounding winds of pessimism, blowing continuously from varying angles to try and extinguish its glow. I will not resign my efforts to hope for the best and put on a brave front. Bad news is just an impetus to learn more, seek alternatives, and be grateful for what I do have. I’m blessed. Nothing I face is terminal; I’m not dying, and that’s more than many people can say. My conditions may be degenerative and manifested in more substantial physiological damage than we initially thought, but all that really means is more joint and muscle pain and less musculoskeletal and GI function. At the beginning of the day or the end, this is still a way more privileged, lucky, and healthy life than many people inherit. How truly thankful I am to have been born into my life, with the parents, family, friends, circumstances, opportunities, safety, and blessings that I am so abundantly handed every day. Any setback I encounter is surely a dream for someone else in her battle in this world. I fight for myself to be strong and that becomes much easier when I view every breath as a gift and every circumstance as a blessing. So maybe I choose to edit that first word. Depressing. I’m not quite ready to genuinely call it neutral, but for now, I’ll settle for disappointing. But, I can work with that.

 

Insomnia

Lately, I’ve been sleeping worse than my “normal,” which is already borderline unworkable. I am not aware of a definitive reason for this backslide but I need to find some modifiable causes so I can get back on track. Usually, my insomnia is a product of PTSD or generalized anxiety, physical pain, or SPD problems, and I think that all three of these factors are present in my current bout. The other night, the pungent skunk smell woke me up suddenly at 10:27 PM and I was up for the remainder of the night. I wasn’t anxious, I just could not get comfortable and settle my body back down. Strong smells give me headaches, so eventually I took some ibuprofen to try to lessen the throb through my temples, a pounding so heavy that my head was rising and falling perceptibly on my pillow with each heartbeat. Once the medicine eventually kicked in, I seemed too alert and out of sorts to return to sleep.

Most nights, joint and muscle pain is the principle offender keeping me awake. I have recently learned that I have a connective tissue disorder and an immunological disorder that interact in an (im)perfect storm, saddling me with eerily puffy joints and pain that radiates outward to overly tight and achy muscles. My entire body feels the way the ears feel after an extremely loud concert, when they continue to reverberate with the auditory ghosts of the band’s drum kit. My knees alternate hues between my normal pale skin and flushed pink with each cyclical pulse. My mom calls the crepitus and extreme tightness my Tin Man body, but unlike that jointly metal man, there’s no oilcan equivalent that can lubricate my adhesions. They seem to spontaneously resolve enough to restore enough mobility to move around after a few days of an intensified flare up. Needless to say, more often than not, my body is its own drum set at night, with different joints conversing in palpable throbs. It’s not only painful and debilitating, it’s a sensory assault that exceeds my attenuated nighttime threshold. Lately, it does seem that this pain has ratcheted up a few notches in its severity, which surely is contributing my increased sleep disturbances.

Later today, I have an appointment to revisit the rheumatologist, so hopefully I’ll muster up the courage to explain the nearly constant pain that has characterized the last month or two and then get a more workable solution.

When I can’t sleep, I think, or more accurately, my mind floods with thoughts. Lately, I’ve been reading at night. It seems that finding connection and unprecedented compression in Charlotte’s Web was a gateway to discovering my appreciation for other fiction books as well. It’s still the case that I prefer nonfiction books, particularly those pertaining to science or health and biographies and memoirs are my favorite, but I’ve found that some literature mimics a memoir in voice, story, and tone and I can get engrossed in those too, as long as I’m patient enough to get through the first few chapters. I recently devoured two stories told from the point of view of Japanese-American characters and really enjoyed those and found two others centering around characters with Asperger’s that consumed my attention. Even when I wasn’t reading, I found my mind constantly perseverating about the storyline or characters. I’m sure this is normal for your average bibliophile, but that’s not a word I’ve ever used to describe myself. Until now. This interest is starting to collect all the ingredients needed to prepare a fully cooked obsession. When I’m not able to read, I’m searching for my next book because my acceptance ratio is still pathetically low. Thank goodness the library allows for twenty reservations; I’m only able to get into about one in that group, but when I do, it’s a race to read fast enough to satisfy my curiosity and intrigue. When the last page had been turned, I find myself needing to console my little heart ache that those characters aren’t real and their stories don’t live on as something else I can follow. I think that’s one of the magnetic qualities about true biographies and memoirs. The people are real and in today’s world of many people accessible via social media, it’s easy to maintain a “relationship” with those individuals who spoke to me.

Like many times, writing has again served as a vehicle to drive me to that “eureka” place. I’m suddenly wondering if my draw to read and my excitement that certain books cultivate is actually contributing to the insomnia from a two-pronged approach. First and more topical, my doctor recommended I read at night when I can’t sleep as a sedative to lull me back to sleep. It seems this, like many things in my life, had had the opposite effect and waking up to read serves as a treat so my subconscious rouses me to provide a dopamine hit splattered on the pages of my latest read. Secondly, the plots and characters penetrate that “I care about you” part of my brain, adding to the stockpile of endless thoughts and emotional responses to mull over at night when my eyes shut and switch is turned on to process the conveyor belt of amassed ideas. If the book contains suspense, danger, or some other peril the character must face, I worry constantly about his or her successful resolution. When characters are in stressful situations, I’m in perpetual angst. When they experience loss, so do I. I carry the burden of their woes, at least until I oversee their mitigation of the strife and even at that point, I seem fixated on worrying about what might have been. Maybe I’ll have to limit the reading time to available breaks in the day like waiting for a doctor!

Again, like most of my problems, there’s no single culprit here and as with many things in life, nothing is purely good or bad. On the surface, reading is a healthy habit but as someone who lacks the ability to easily find balance, I may need to implement a system to moderate my exposure to and timing of books. One thing I’ve learned is that I’m hypersensitive to nearly everything—changes, emotions, ideas, the environment, medications, to name a few. The most successful approach to introduce something without gravely disturbing any semblance of equilibrium is careful, deliberate titration, followed by a pause to assess the impact, and then either continued slow-dosing or rerouting, it necessary. While my instinct and modus operandi is always to go full-throttle with things, ultimately, this is rarely met with the success that I hope for or that I can possibly achieve with more gradual assimilation.

Is Saying Hello a Lost Art?

For the most part, I am diligent about greeting other people that I pass while on the street or otherwise out and about. It’s not my nature to be extroverted and I certainly don’t exude a gregarious vibe, but this seems to be the polite thing to do. Yet, more and more, I find myself in the position to ask myself: Why do some people refuse to say hi or acknowledge the presence of another human? As an autistic adult—a model specimen of the extent to which people can be introverted and completely uninterested in small talk or interacting with strangers—this social behavior is particularly baffling to me. Within such socially-inept shoes, it’s hard to imagine how someone could be less “friendly” and commit a more fundamental social faux pas. These individuals who seem so committed to ignoring me may also be on the spectrum, but statistically speaking, it’s rather unlikely. I’m also not referring to one-off encounters with random passersby, but rather people I have not formally met but with whom I cross paths habitually over many months. For example, there were three people in my old neighborhood in Connecticut who refused to wave, nod, smile back, or otherwise commit to any semblance of recognizing my presence. I’d pass each of these neighbors individually, nearly every single day (literally over 300 times a year!) on my daily runs or walks while they were also on theirs. Particularly because it was often pre-dawn hours or contending with winter elements, I felt we shared a kinship in addition to the narrow roads.

My first instinct is to also ignore the oncoming pedestrian, but I’ve learned that it’s more socially acceptable and appreciated to greet the other with a simple nod, greeting hand gesture, or vocalized hello, and so I’ve conditioned myself to do so. I also would understand the situation more if I rarely saw these people or if they may not have heard or seen my acknowledgement, but I’m positive they hear and see me, especially because the more times they ignore me, the louder and more dramatic my gestures become. It’s not antagonistic or even necessarily conscious, but it seems to be my desperate attempt to have my friendliness reciprocated. The more I’m ignored, the greater my unconscious drive to convert them into a fellow greeter. With one male runner, my own feeble attempts to crack his icy exterior resulted in embarrassingly animated good mornings that even I tried to stifle. It seemed untamable. A simple smile and nod cascaded over time into a double handed frantic wiper motion and a boisterous “goooood morning!” In hindsight, my overcompensation probably smothered any hope of reciprocity but I not only seemed unable to let go of the fact that he refused to say hi, but I seemed powerless over my escalating response. This pattern played out with the two other avoidant individuals. Eventually, two of them caved: I was able to rouse a little smile and occasional hand raise (without permitting herself to hinge the hand at the wrist to wave) from one woman and the unfriendly runner also would pant out a hi or wave. The other guy was resolute in his refusal.

I think it felt worse and more confusing in this prior neighborhood because I lived in the middle of nowhere and only saw five people regularly on the roads, so to be snuffed by three of them stacked the odds against me and made me feel even weirder. I became the common denominator because what I noticed is that they often said hi to each other or other neighbors who happened to be out in their driveways as these pedestrians passed; the only pedestrian they weren’t talking to was me. It’s not even like my hyperactive gestures preemptively gave away my oddities or social awkwardness. I stuck to one of the routine greetings for at least five months before things turned more severe. That’s some 150 days to establish a basic hello.

Now I live in the center of a busy town. It’s more excusable to ignore a friendly smile or wave and more likely that one is distracted by something else. It still happens here all the time, but I’m less inclined to take it personally. After all, maybe I am the one in the wrong or at least clinging to an extinct practice. Is basic social recognition of another human a dead or dying art? Should I also revert to my comfort zone, the neurological programming installed in my birth to ignore others? It’s easy to uninstall my “updated” program, which tried to emulate the social behavior of greeting someone and run the more compatible initial version. There’s no readily apparent guidebook on this. I even Googled it and came up with nothing. My low self-esteem is inclined to imagine there’s a caveat or asterisk aside wherever such rules are written that says something like “*void if encountering a weirdo or autistic person; they don’t need a hello.” Speaking as one, that should be rewritten if it does exist. Yes, I may naturally prefer to keep entirely to myself, but it’s healthy and fulfilling to feel accepted by others, blend in with the customs, and overcome massively introverted tendencies to politely engage with others.

Of note, I do find people with all types of readily-apparent differences and disabilities seem beyond eager to engage with or glom on to me, and I gladly return the enthusiasm, so I am at least approached by some. Clearly, I’ve got more observing and research to do here.

With sincerity, I’ve been practicing a host of smiles, nods, waves, and hellos in the mirror and aloud to myself at home. I’m trying to figure out if mine are on par with “normal” people’s and how to exude a more naturally-welcoming expression. Of course, with myself as the sole judge, I’m lacking in both the informed and unbiased domains, but it’s a start. The last few walks, I’ve tested my skills on my dog and tried to take note of which ones she seems to interpret as friendlier or more exciting, demonstrated through wagging, eye contact, or even jumping. Unfortunately, she’s also biased and uniformed because she seems to love everything I say to her and is raptured by all hand gestures, but at least it’s comforting to know I’ve got one beating heart that is guaranteed to appreciate my outreach! For now, I’ll continue observing the interactions between others within earshot and eyesight, I’ll practice my own social behavior, further investigate the norms and expectations, and fight my desire to revert back to ignoring everyone until I’m confident that’s the current trend. After all, I truly do want to be camouflaged among the masses as a warm, welcoming, and friendly human being.

Self-Disclosure Reluctance

I’ve had a couple of days to mull over my job interview and my reluctance to self-disclose my spectrum diagnosis. My husband probed me to consider why I had such a strong aversion to opening up about being autistic. “Your whole point on your blog is that it’s not something shameful that you need to hide,” he argued, which is true and a feeling I stand behind. However, due to the stark incompatibility between the nature of the position I was applying for and the prevailing stereotypes about autistic people, it felt too risky to divulge. Had I been interviewing for a position that was likely unaffected by assumed autistic weaknesses or one where typical traits would behoove one’s aptitude for the job, I likely would have been more inclined to be forthcoming. Unfortunately, this was far from the case in this situation and since it is a job I am actually interested in, the risk of misconceptions counting me out of consideration seemed much greater than the reward, which was simply the ease of sharing my diagnosis honestly and avoidance of the anxiety that ensues from needing to cover it up.

I’ve mentioned that I believe one of the hallmark symptoms that society associates with autism is a vehement lack of empathy and people skills. I wholeheartedly disagree with this stereotype and continue to find that the pendulum actually swings to the far opposite side of its empathy trajectory for myself and many of the autistic women I communicate with (I don’t know enough men to weigh in on this): we are often overly empathetic to the point of discomfort (I’ve written more about this here). That said, one of the reasons this stereotype prevails is that it used to be a deficit included in the traditional diagnostic criteria.

Lacking empathy doesn’t bode well for a position in the customer service industry or for any position that involves interacting with or caring for people. A potential employer may not be aware that being on the autism spectrum doesn’t automatically mean the candidate lacks empathy, is an ineffective communicator, and will not be able to show compassion and understanding toward customers or other employees. While the employer may know someone on the spectrum whose presentation contradicts these assumed deficits, it’s less probable than the likelihood that he or she does not. Again, had I been applying for a job that required meticulous fact-checking or number crunching, it would have been a different story and I would have felt freer to disclose without incurring undesirable fallout. Autistic individuals aren’t generally thought of as people persons so a position that requires this aptitude at the forefront would not be selected as the best fit. In a pool of other qualified applicants, an autistic person carries the stigma of a significant disadvantage and would likely be immediately rejected unless there was some coveted skill or otherwise notable advantageous aspect to their candidacy. Such standout benefits and accolades do not apply to me or my application. I’m qualified and a good worker, but it’s unlikely that I’m more so than anyone else. The irony is that I am great at delivering customer service aligned with the mission and values of a company with timeliness and care. While I’m not ashamed to admit I’m a terrible communicator in many regards (particularly as it pertains to social chitchat and interpreting the meaning of verbal and nonverbal messages within their context), I’m quite adept at professional communication and adhering to and mimicking the “voice” of a company, which enables me to interact in a manner consistent with the tone and message of a company in a clear and compassionate fashion. This is one skill I’ve honed over years of dedicated observation and practice; I’ve memorized rules, patterns, and expectations surrounding the language and structure of cordial professional communication. Equally important, I’ve learned to recognize or anticipate when I need help with a necessary interaction; I’m not afraid to reach out when the situation confuses me or necessitates guidance.

All this said, disclosing my autistic diagnosis felt unnecessarily risky and likely to compromise my chances at landing the position I really wanted. It seemed the justification and explanation requisite to dispelling the myths and stereotypes associated with autism to defend my qualification would be far too extensive than the video interview warranted. Like opening a can of worms, it would usher in a lengthy discussion that just felt overwhelming.

I don’t know if I’ll get the job or not. Likewise, I won’t know if failing to disclose will have affected the outcome. In this particular situation, I do have the hunch that the employer seemed to know I was on the spectrum or that there was something “different” about me. Whether this was because he somehow was informed through careful research (my publicly-accessible information does not make it easy to deduce) or through my mannerisms or answers during our video chat, I also don’t know. There’s certainly a chance that he had no idea and I read into his question and ascribed this meaning, but the way he asked it felt otherwise. So, I will wait in hopeful anticipation and I will consider how forthcoming I want to be with my diagnosis in the future. In a perfect world, I’d self-disclose without fear of negative ramifications; we aren’t there yet and I’m not sure I’m always ready to be a trailblazer, at least not when I really want the job. I’m hoping to experiment in the future and gain confidence in owning who I am without undesirable consequences.  More importantly. I hope to dispel the myths of autistic character flaws by striving to embody the best qualities, address my weaknesses, hone my deficits into strengths, and live, work, and interact as the best version of my authentic self.