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.

 

A Memory of “Nothing”?

This morning I have a memory of New York City and my sister. After I’d lived there for a couple years, she got a teaching job in the Bronx and moved to East Harlem. My memory takes place in her small studio in a walkup building on 3rd Avenue. While I lack any ounce of interior design sense, space organization, and taste for what “looks right” or “goes” together (especially with clothes!), my sister is a master of creating eye-appealing spaces and combinations. In just a few weeks and a shoestring budget, she had her place inhabiting the “cozy” and “chic” camps simultaneously. This memory I’m sitting with today isn’t any sort of monumental milestone or particularly notable activity. What I remember is best summed up as simplicity. After a combination of taking the bus and walking to her apartment, I stood, my face out the window, her light, breezy white curtains rippling along the wide window frame in the gentle summer air. The street below was bustling with cars, pedestrians, and street carts, mostly wafting the aroma of tamales and the joyous sounds of neighbors’ Spanish greetings as they bumped into one another. I drank in the vibrant scene and the surprising freshness of city air, my sister joining me in the window, along with her heavyset, but ever-so-soft cat, Bean. In my memory, nothing else happens. The memory is the moment of simplicity itself: standing side-by-side with my older sister, silently acknowledging to myself the magic of New York, the gift of her presence in the city, and the ties that bonded us.

Although it seems that memory should be categorized as one of little importance because there’s no “action” or describable event, there’s an impactful feeling that rushes back when I mentally put myself back on that Sunday afternoon. It’s a place I go to in my mind when I need to remind myself to take pause and soak in the moment because sometimes the moment drifts away too quickly and is gone before you are ready. Five years from now, this moment—lying on the floor in my little living room, listening to the choir of June morning birds, reminiscing, writing, and thinking—may become one of just as much importance as the August Sunday afternoon in East Harlem with my sister.

Research shows that strength gains or physical growth from exercise come during the rest, and not the work itself. Emotional and spiritual growth seems much the same: it’s not always the big moments that directly change us. Growth also happens from those big moments (and small ones) in the breath, the pause, between. This memory of “nothing” is actually a memory everything that matters and the significance of the seemingly mundane is in fact, the direction that deserves the greatest focus and appreciation.

 

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.

Stunned into Silence

My selective mutism completely overtook me yesterday. I went several hours without the ability to speak. The little voice I was eventually able to conjure up was so feeble and small, it was like a hushed mother trying not to wake the baby in her arms. This time, it wasn’t directly tied to a medical appointment, although I did have one later in the day that I seemed nervous about. For this reason, I’m not sure that it was entirely separate and more likely, my tension and anxiety in anticipation of the appointment played a role. Still, it typically hasn’t been the case that I lose my voice prior to an appointment. Instead, I’m usually quite chatty until I enter the waiting room, and effectively smothered like a fire extinguished by a woolen blanket. 

The precipitating event yesterday seemed to be an emotional explosion in the morning. After trying repeatedly and unsuccessfully to reach Ben via his phone, I panicked that something was wrong with him and adrenaline coursed through every last millimeter of vasculature in my body. This call was already one fueled by stress because I was having debilitating dizzy spells and so I was contacting him for support. When he didn’t answer after many, many attempts, my irrational brain immediately jumped to worst case scenario stuff (car accident, bad fall, etc.) and skipped all of the more likely and less dire potential causes for his lack of reachability. (He just inadvertently fell asleep.) In fact, these sorts of realistic possibilities were not even considered for a fleeting moment; my trauma brain took over and immediately assumed the worst and only the worst.

It wasn’t until early this morning that I was able to connect the dots and make sense of that. I remember exchanging a couple of really helpful emails with one of my sisters last year about PTSD and emotional fallout from traumatic events. I had reached out to her for advice about my problems with PTSD after the attack because she had survived a bike accident years earlier, and while quite different in nature, still certainly a traumatic event to overcome. I correctly figured that she might have some tips or at least solidarity with some of the emotional demons I was facing. She told me that she had very little PTSD and was pretty much over it now but that she still would get incredibly mad at her own husband when he was unreachable, even though she couldn’t draw any connections between not being able to communicate with him and her accident. As I lay on the rug this morning thinking about things like I do every morning, trying to meditate and relax, my sister’s words suddenly helped me understand what went on with much more clarity.

Not only do I hate not being able to reach Ben if I feel like I need him, but it instantly transports me back to the first moments after I getting up from my attack because after I attended to my immediate physical problems, I sought out my phone, which had been tried from my hands and flung behind the couch, to call Ben. I called. No answer. I called. No answer. Then he texted to remind me that he was out to lunch with friends and he would contact me when he got back to the office. Instead of asserting the urgency and severity of my needs, I just felt rejected and alone. Of course, had I told him that I just got brutally attacked and raped, he would’ve been home or at the nearest hospital to meet me, as soon as the first available cab could wiz him there. I blame the complete shock I was in, the searing pain, the greatest depths of fear and disgust I had ever experienced on my inability to voice my needs. My therapist has since told me that this is a fairly normal post-traumatic response. I simply wrote back “fine,” and by the time he did call me back, I was completely consumed by silence. I just texted back that I no longer want to talk, which was technically a lie because I did want to talk but I was entirely unable to. It’s fair to say I went into a hibernation of sorts after that. I completely disconnected in all sorts of ways from him and everyone else in my life at that time for several days. Needless to say, I have more than just anxiety at face value when I can’t reach Ben when I don’t feel well; it’s inseparable from the horrific memories surrounding that dreadful day. 

Anyway, after I was finally able to wake him with call after call, I exploded at him in a tirade of tears and shouts about how he terrified me and I thought something happened to him; although unfair and irrational, I spoke the truth and my feelings were deeply seeded and real. 

The entire outburst lasted all but a couple of minutes, but it relegated me to that of a meek nonverbal mouse for six hours. I felt like an outline of a human form, one that could be blown into scattered fragments like a summer dandelion puff. Even when I walked the dog, my thoughts were just mouthed in inaudible configurations of the words I intended to say and my muscles felt melted along my bones like the feeling that only comes after being physically spent at the end of a hard race. 

By mid afternoon, I was able coax out a small voice, which was a relief because I rarely feel unable to speak for so long. I think it’s an emotional issue more so than a physical one, my autism therapist says these sorts of “shutdowns” can happen.

Even though I’m often upset and juggling a lot of demanding issues, I rarely lose my cool. I’m one of the least confrontational people I know and almost always internalize fear, anger, hurt, or overwhelm instead of letting it surge out. This unfamiliarity adds to my discomfort and shock when it does escape in a demonstrable way. I thrive on stability and predictability, and any sort of fitful anger or hysteria uproots my feeling of control, even if it is a farce in reality and unhealthy to bottle up. 

The most difficult part of the experience was explaining myself to Ben. Although I don’t concede that my exaggerated response to not reaching him was justified, I do now acknowledge why I have this post-traumatic reaction. My sister is one of the most even-keeled and logical people I know, so if even she has had similar irrational behavior, it further provides me understanding of my own panic.

The mutism must be the way my mind recoils in an attempt to restore equanimity after an emotional torrent like the echoes of deafening silence after a massive explosion. It’s an uncomfortable place because I’m the silence, I cannot express my thoughts or needs. In the silence, my brain runs discounted showings of the memories of the attack, flooding “TV screens” in my mind with simultaneous screenings of lived trauma. The verbal silence seemingly opens a permissive and inviting gate for the memories I try to suppress to air on full blast enshrouding me in the disgusting fearful garb that cloaked my entire conscious and unconscious mind post-attack. Why can’t I burn these memories and watch them rise in lofts of ash far up into the sky? Why can’t I always operate with self-control, logic, patience, and calm? When will my resilience become foolproof and my strength no longer be an act? I can’t answer these questions and I’m guessing that the answer may not be what I hope it to be, that’s why it’s more productive to focus on what I can change and the progress I have made. Yesterday’s outburst was not progress but unpacking its roots was a substantial step forward. Before today, I had no concrete grasp on what was precipitating such unduly magnified reactions. I speak frequently of wanting all of this PTSD stuff to vanish, and I do, but I’m sure there are invaluable lessons and some purpose that I am deriving from this place of pain and this space in my life. I will do my best to trust in the process of my healing, the outward expansion and inward growth that I will glean, and hope that each experience and tribulation is like a crucial piece of the foundation or scaffold from which my “building” as a human becomes better, stronger, and more useful to those around me. 

Phone

To add to my string of recent falls, I took yet another tumble down some of the stairs yesterday. Thankfully this time, I didn’t cause much bodily harm although I did crack my cellphone screen. Of course, this is certainly a better trade in many ways, I found myself being just as upset, if not more so. I know that people talk about technology addictions, especially in terms of some people’s attachments to their cellphone, and I’m probably in that camp of people. I can’t really surmise why most people become obsessed because frankly, I don’t have any friends who are to ask. My husband still uses a flip phone and no one else’s phone in my family seems to be a permanent extension on their hand like it is in my case. For me, my phone is my world. It is my way to connect to other people and, in its own right, it is my friend. Since I work at a home office and have no local friends, it is the only vehicle through which I communicate with people and the outside world. I know this is abnormal and unhealthy, but it is my reality. My phone is my anti-anxiety medication; when I don’t feel well, I remind myself of the outline of my phone in my pocket and I feel assured that I can get help if I need it. When I was attacked, as soon as he grabbed me from behind and threw me to the ground, he ripped my phone out of my hand and flung it across the room. When he silenced me, I had no means to communicate that I needed help except silent prayer in my mind. Four days after the attack, I was in separable from my cell phone. My hand was constantly on it, even when it was in my pocket, under my pillow, or in the bathroom.

This phone has been with me for nearly three years, which, given my carelessness, propensity to fall or damage things, and its constant use, is remarkable. Maybe it is the length and depth of this “relationship” that, ashamedly, makes me mourn the breaking of this device.

I am fully aware that phone is not a real friend, and to even remotely consider it as such is quite pathetic. I want to connect with people. I want to have more friends. I’d love to have someone who called me to meet up and hang out. This is a process though and an arduous and unnatural one (for me) at that. For now, I have a handful of good friends that I text or call daily. These people, for the most part, inhabit fragments of my “old” lives: times when I was surrounded by more people, forced to be more social because of work or habitat, or was less encumbered by physical and mental obstacles. (Chronic disease and my near inability to drive certainly hampers my ability to participate in normal social events.) These people have hung with me through changes, challenges, and miscommunications. They have allowed me to grow as a friend and they have ridden out the bumps I’ve made as I’ve learned to be a better friend. I am blessed to have a place in their hearts and I honor and nurture the prominent residence they have in mine.

I am a member of several online support groups for adults on the spectrum. I connect with these virtual friends through my phone. If people were mapped in Venn diagram, the overlapped regions are inherently much larger between my circle and the circles representing many of the other group members than my circle and many neurotypical peers whom I want to befriend.

Like sharing a common culture, language, or customs, I’m more closely “related” to other spectrum-dwelling adults in many ways, and the reciprocity of understanding one another is both easier and more expansive than between me and a typical people of “normal” neurology. Although I am so glad to have access to an artistic community thanks to technological and communicative advancements provided by the Internet, I can’t help but be honest and admit that I’d still really like friends in the flesh who I actually spend time with. Their neurology is unimportant to me as long as they are good people. Even though an autism diagnosis is much more common these days than even twenty years ago, obviously, the majority of the general population is not on the spectrum so it’s more likely to find neurotypical friends. I need to be able to bridge the gap between these two worlds. While I have done this successfully before, it takes time and effort (and compassion and patience of the other party’s part!).

Far and above the challenges posed by my social, emotional, and physical problems, I believe the biggest hurdle to clear making friends is the schedule I keep. Essentially, it’s like that of a shift worker, working second shift. Even for those social butterflies who keep such a schedule, finding friends and participating in social activities is nearly impossible, especially if you don’t live in the city and are isolated in a small town. New York City may be the city that never sleeps but western Mass, although wonderful in many ways, gets plenty of sleep. My body operates on asynchronously with most other people. I’m up before 3am and done for the day around 5pm. I’ve tried coercing it into a more “normal” routine, but that just wreaks havoc on every physical and mental process. Even with Benadryl and nights of not falling asleep, I cannot sleep past 4am. I can then try to remain in as much of a sensory-depriving environment as logistically feasible to keep my overload below threshold, but even so, it’s virtually impossible to have the physical and mental stamina to persist past 6pm before I must be prostrate to the couch with no movement or talking. My brain runs nonstop in high-gear all day and I have yet to tame her incessant work; I can consider and effectively work on many things at one time, but then I run out of legs for the end of the race. I’m a relay of runners who ran their lap together around the track at full speed instead of passing the baton for each individual leg. I’m embarrassingly exhaustible; I’m a racecar on full throttle with no brakes. All this is to say, when most people head out the door for their morning commute, I’ve already put in four or five hours of work, and when almost everyone is clocking out for the day and are finally available to hang out, I’m crawling into bed or nearly comatose on the couch. The only groups of people I seem to overlap with are stay-at-home parents, the elderly or retired). My small town seems to lack any sort of daytime programming or activities for anyone outside of the aforementioned groups, and truth be told, I’m working most of the day anyway, even if I do have some scheduling flexibility. Despite this scheduling incompatibility, I keep looking and hoping to find some venue to meet in person and cultivate friendships. It’s easy to resign my socially-avoidant self to ongoing isolation and fall prey to a myriad of excuses, but I’m actually rather disciplined in researching options, trying to get out there, and simply recognizing the obstacles for the purpose of strategically mounting an effective offense rather than ceding to their debility. At the end of the day, I need to respect my deal breakers (in terms of my work scheduling obligations and energy needs) but compromise on every possible manipulatable variable to try to make it work. My mom always says I find these really interesting opportunities and I do because I’m willing to cast a really wide net; you never know what will pan out so it can only be fortuitous to keep an open mind and religiously seek opportunities for whatever it is you desire.

I am grateful that I live in a time of interconnectedness and communities engaged through technology. In many ways, the Internet has made the world smaller by forging bonds across great distances. My remote friends and online social support network keep me from being entirely marginalized and allow me to hone my relationship skills and understand myself better and more compassionately. It somewhat removes the “freak” or “loner” label that I’d otherwise tattoo onto myself (instead it’s just a removable sticker). Perhaps I’m too addicted to my phone and I recognize that it’s far healthier to have in vivo friendships, but for where I am now in my life, it’s an indispensable tool and companion, a device that teaches me, alleviates my anxiety, and connects me to others and my world. I hope my new one further guides me to forge friendships and that more of the “lifetime minutes” for calls sent and received are occupied by quick conversations to establish plans with others, then it will navigate me to the meetup and get stowed in my pocket while I make new memories with new friends.

 

Comet

Yesterday was our seven year anniversary of adopting our beloved dog, Comet. I remember the evening; it was a Thursday and Ben picked me up in front of Queens College where I was finishing up my graduate degree in Exercise Science and Nutrition. He was driving a rented ZipCar because our puppy was in a litter being fostered in southern Connecticut. The agency, Pet Rescue, pulls dogs from kill shelters mostly in the South and brings them up to the Westchester area, where they are fostered by volunteers until adopted.

I had been begging Ben for several months to allow us to get a puppy but the time wasn’t right at first and for a short stint, we lived in a small studio in Queens where dogs were not allowed. I was going through an emotionally difficult time and desperately wanted a pet, so my mom let us temporarily foster her cat for several months. This was helpful, although it didn’t fully scratch my dog-desiring itch. For numerous reasons, the Queens apartment didn’t work out and we ultimately moved back to Harlem. This time, we landed a dog-friendly rental and I revisited the discussion. Ben, an avid dog lover, finally agreed that it could work out. I had been researching dog rescue agencies and keeping my eye out for specific dogs for several months. We didn’t have a particular breed in mind nor clearly defined desired characteristics; I was convinced I’d know the right dog when I saw her. And then I did. As soon as I happened upon Comet’s picture and short bio on Pet Rescue’s website, I was positive that she was my dog. I showed Ben, and, beginning that night, I pretended Comet was already mine. When we would ride the elevator, I would pretend she was on an invisible leash pulling me out the door. When we would walk to the subway, I would extend my arm as if she was leading the way. At night before bed, I would kiss imaginary Comet goodnight. Invisible Comet had already warmed her way into my heart. Unfortunately, we were not yet approved as viable adoptive parents according to Pet Rescue and needed to undergo their rigorous application process. I eagerly submitted the completed application, but we still had a phone interview with Katie (her foster “mom,”) a Skype tour of the apartment to verify its safety, and two references needed to call on our behalf as suitable dog owners, all while adorable Comet was up for grabs for anyone, baiting even the most cold-hearted dog hater with her adorable face. Ben was stressed. The more and more I became convinced that she was my perfect dog, the more he figured we wouldn’t be approved in time to “win” her. He also cautioned me that even if we were approved and she was still available, we should keep our mind’s open for other potential dogs, including her littermates, because you “can’t judge a dog by her photo.” I pacified him with halfhearted yeses, but inside, I knew she was my girl.

Thankfully, we worked through the hoops of the application process in an expedient fashion and were approved. (For the record, I fully believe in the need for formalized process; adopting a pet is a big responsibility.) I set up the trip to meet the foster dogs under Katie’s care and scoured Craigslist for a home crate and a travel crate. We prepared the apartment with puppy toys, the food she was used to eating, and training books.

When class let out that night, I was like a caged bird set free on her first flight. I ran to find the ZipCar and I manically chatted with Ben the whole ride about what Comet would be like and how much I would love her. When we arrived, Katie led us to the back where two litters of puppies tussled with one another. They swarmed us upon our entrance into their pen. I had a broken shoulder at the time, so I kneeled on the ground to prevent getting tangled or knocked in their play. Like a human sand pile, puppies climbed all over me and ran up and down my back and over my head. As much as I like puppies, I hate chaos and get easily overwhelmed, so I was actually fairly miserable. But then there was Comet. That sweet little girl came up somewhat gingerly. She placed her front paws on my chest and poked her neck out to smell my face, and then licked it. While puppies yipped and yelped and jumped around us, Comet and I locked eyes and connected. “That one is Comet,” said Katie. “And this is Cider, and this is Condor…” She continued to list other C-names and point to each rowdy furball. “This is her!” I said to Ben. He’s a dog magnet, so every dog loved him even more than me and he more agreeably romps and ruffles with them so he glanced over at us, said, “Are you sure?” and then fit in more puppy play time. He called her over and then engaged in spirited play and Comet seemed sold on him too.

Before we knew it, we had Comet in our new travel crate and I was sitting with her in the back of the car. For just a moment after we had pulled away from Katie’s lot, I panicked that I wouldn’t be the mom she needed or wanted and that I’d fail her. My heart started racing and I looked at her tiny little body cowering in the corner of the crate. She had seemed more energetic and spunky at Katie’s and I was worried she was overcome with sadness that we’d just pulled her from all the siblings and friends she’d ever known. She’d already lost her real mom, and I couldn’t bear thinking I was causing her more pain. I opened up the crate’s door and extended my arm inside. Little Comet was nearly trembling, but upon encountering my hand, she licked in and came to the front of the crate, nuzzling her nose through the cracked door to try and climb onto me.

From there, our bond strengthened by every hour of every day. I wasn’t working at the time, so I spent my days before class training and playing with her. She had never used a leash before, which is mandatory in Manhattan, and she wasn’t yet housetrained, so we had a lot of ground to cover. Each day was an adventure, but she was eager to please and a dedicated student.

Seven years later, a lot has changed and yet a lot remains the same. She’s still my best buddy, my companion, my sweet and loyal girl. She’s an integral cog in the Amber-Ben triad. Ben and I have moved six or seven times, held probably eight different jobs between the two of us, had several broken bones, hundreds of cries and thousands of laughs, and probably gone on enough walks with her to cover the distance across our country and back. Comet has been there for all of it. She is flexible and easy-going. She has crazy food allergies like me. She is the first to greet me every morning and it’s never with a bad mood or lackluster energy; every morning she treats me like I’m a gift, excitedly wagging, whining, and sneezing (her preferred expression of joy) when I rise. She is relentlessly loving and interested in whatever we are doing. She saved me when I didn’t want to save myself. She has been my friend when I’ve had no one to talk to. She’s taught me to be a mom and a leader, more patient and prepared. Despite all the troubles and challenges Ben and I have faced in the last seven years, it’s impossible for us to truly believe our life is unfair. We have Comet and she’s been far more than we ever dreamed she’d be.

Superhero Mom

In honor of Mother’s Day, I thought I would dedicate a brief post to my mom, who, for all intents and purposes, is really a superhero masquerading as a mom. Although I’m an adult and old enough to be a mom myself, I still need her; in fact, possibly more now than ever. And as a young adult with a chronic illnesses, autism, depression, and PTSD (to name just a few of my challenges), my mom has an overwhelmingly difficult task, yet she far exceeds any expectation or definition of a “mom” that I’ve encountered.

For someone who has such a easy time writing about quite a variety of topics, I always find it difficult to explicitly and effectively convey how much of “my everything” my mom is. I think that’s it though:  she is so much more than just a wonderful mom. She’s a dependable friend, an informed counselor, a confidant, a cheerleader, an unwavering source of support, to name a few. Maybe her importance in all of these roles and all of the many other hats she wears for me is so influential and necessary is because she is, in many cases, “the” instead of “a” for these roles: a sole warrior on the “Amber team”, working tirelessly behind the scenes to support my needs and dreams. It may sound cliché, but outside of the dyad of Ben and me, my mom is my best friend and my support system no matter what storms I have to weather. I’m not an easy person to befriend, given my physical restrictions for health reasons and my social confusion and blindness. Given my pain and my problems, I’m certainly not a pleasant or positive person many times, and against all odds and every challenge, my mom persists. I have yet to reach a day where my mom throws in the towel on any one of those crucial and tremendously generous hats she will don for me. This dependability has taught me to trust in her unconditional love and just be honest and open about my worries, problems, and even my lofty goals. I used to deeply dread being the bearer of bad news or opening up about some of my issues because I wanted her to see me as successful and well-adjusted. That facade is long gone! When I reflect on what changed, I think it was my ability to have faith (after continued reinforcement through her consistent backing of my needs) that mom was going to love me and help me no matter what. This is the most priceless and important gift anyone in life can receive. No matter what battles I need to face, I feel confident that I have a dedicated teammate who will help me face the challenge, strategize a way to work through it, and ultimately defeat it.

My mom carries a tremendous amount of wisdom, knowledge, patience, and dedication to learning about my problems and conditions so that she can both understand me and help me understand myself so that I am more comfortable and better off. Again, this is one of the most selfless and generous gifts I could possibly receive. My mom gives me her time, concern, compassion, and her strength when I don’t have enough of my own. Her unwavering support and love have stripped away some of the anxiety and guilt that I tend to innately bear for being “different” and “difficult.”

Perhaps equally important is how honored and special I feel that my mom allows me to be one of her best friends. She is open and honest with me and entrusts me with her own fears, pains, and emotions. As someone who has very few friends, this reciprocity in conversation and support makes me feel valued, respected, and purposeful.

I hope, for both of our sakes, that this year will be smoother, with fewer challenges and more clarity, comfort, success, and happiness. At the same time, I feel blessed that I can rely on my mom’s support in whatever way I need it and reciprocate this to the best of my ability, though we better not be evaluated on the same rubric because I’m more than a few paces behind her!

To my mom on this Mother’s Day (and every other day): Thank you for being everything I need on any given day and seamlessly shapeshifting to fill that need. I used to make you plaques and awards for Mother’s Day that read: World’s Greatest Mom, but as I’ve grown up I’ve found this to be a significant understatement. You are by far more than the best mom ever; you’re the best everything-I-need-you-to-be ever.

Lonely

I’m painfully lonely today. This is certainly not an unfamiliar feeling for someone as introverted, socially-avoidant, and socially-isolated as me, but it’s worse today than usual. I’m usually quite satisfied with somewhat robotically and unemotionally going through my day in solitude and that’s exactly how virtually every weekday is, except for the frequent spattering of appointments throughout my week. I work full-time from my home office and Ben and I can count the minutes, rather than hours, that we are in one another’s company each day; our schedules don’t overlap well. I don’t have kids and I don’t have any local friends I spend time with since, in the timeline of someone on the spectrum (who has trouble making friends and doing social things), we’ve basically just moved here. It’s been five months and four days, but who’s counting…

Anyway, today I’m wearing the loneliness like a full-body leaden radiation shield. It’s not the comforting and calming weighted blanket feel; it’s the heavy trapping feeling like trying to fight a strong undertow to get back on shore after a long swim. It’s days like today that the familiar welling of tears keeps filling my eyelids and I have to instantly distract myself to avoid succumbing to their flow. 

My house is cold, both literally and figuratively. It’s an unusually chilly May afternoon and the pervasive grayness has prevented any sunlight from warming the room. The thermostat reads 56, which is even colder than the uncomfortably cool 58 we permitted in the winter to save money. I can taste the figurative coldness, the loneliness, the lack of vitality. When I came back from OT this morning, it overwhelmed me as I approached the front door, the coldness in here hit me like a gust of November air with wet leaves. I could see it, smell it, taste it, and feel it. Coldness like this gnaws on my stomach and encourages me to eat, even though I’m uncomfortably full, to ease the ache and fill the void I feel from lack of human connection. 

The real reason days like today bother me is because I know they aren’t isolated incidents in that it’s not an unusually quiet day that will pass. It’s symptomatic of the life I lead and very much a chronic condition. I want two opposing things at the same time and it’s virtually impossible to rectify that in an agreeable fashion: I long for love and company yet I’m wildly uncomfortable, overwhelmed, and exhausted by it. I prefer to feel connected yet I struggle to connect. Social interaction is my constant logic puzzle or science experiment, as I must carefully observe, analyze, and try to understand and replicate the needed responses. I miss the opportunity to enjoy the moment and be present in the engagement because I’m busy “working” to make sense of it. It’s like instead of watching the production, I’m manning the spotlights and just waiting for the cues instead of comprehending the meaning of the play. It’s not until after the friend and I have departed and gone our separate ways that I can then run back through everything that happened and try to gather the meaning from the whole rather than each individual part. It is then I can assign emotional significance to what happened and not just the literal meaning of each sentence, that I so carefully followed in a calculated manner to determine my next question or response. I appear articulate and like I’m understanding (I hope) because a ton of legwork is quickly and constantly being performed in my head, but unlike a computer, it’s hard for me to simultaneously carry out all of these processes so some information gets stuck in the holding area, a backlog of sorts, that I evaluate later, even if I don’t want to anymore (like if I’m trying to sleep). Unresolved material begs to be processed before moving on to the next activity, which is one reason why social things can be so tiring: for me, they extend well beyond the end of the interaction. 

Any potential sensory overload aside (say we were out and about doing something), my brain will not cease analytic activity until it has completely finished assessing and cataloging all of the verbal, nonverbal, environmental, and contextual information from the encounter. Then, for some reason, after that lengthy and arduous process seems satisfactorily completed, it starts digging up prior social encounters (either organically experienced or observed on TV or elsewhere) and reassessing those or comparing the new material to whatever is stored in memory. There can be no obvious relation but I have to ride out the digestion because I can’t quell it. Sometimes, useful connections are made, such as relating a new discussion about a friend’s volatile freelance job situation with a prior conversation about stressful financial times. Frequently, it’s useless details or seemingly elementary concepts: the geometric pattern of someone’s earrings reminded me of the sweater of someone at the library four months ago or people’s lips purse when they are hesitant to answer a personal question (nonverbal patterns take up a disproportionately large percentage of my brain processing speed and mental attention).

Days like today are somewhat like getting a lousy performance appraisal or report card; all of my acknowledged weaknesses are directly handed to me in objective language. The insecurities I have, the deficiencies I know to be problematic, are presented in clear view and the only possible reaction is to yet again acknowledge their presence and significance. We all want to be “successful” or at least see progress, so it’s ego deflating and discouraging to get reminders of the contrary. As someone who’s naturally and habitually critical of myself, I’m fully aware of many of my challenges and must deliberately try to recognize growth and give myself credit when it’s due. This is not one of those cases. I’m lonely because I live a pretty isolated life and my good friends all live quite some distance from me.

Today, like many days, I turned to Comet for support and, as always, found her love to be boundless and her attentiveness to be unparalleled. While this is truly one of the wonderful blessings of having a loving pet, I want today’s pain to remind me to continue to make a concerted effort to reach out to people I already know and try and cultivate those friendships and also push myself to make new friends in my community. Although this is probably my biggest challenge and least comfortable position, ultimately, it is a required means to the end I desire: meaningful connections with friends who I can spend time with in an emotionally gratifying way. Loneliness carries a potent heartache; I battle enough pains as it is. Alleviating this one will not only eliminate its insult, but friendship has the transformative power to lessen other pains as well. I could use all of that medicine that I can get.

 

Prosthetics & Orthotics

It is coming up on a year since I graduated from the University of Hartford’s MS program in prosthetics and orthotics. It’s amazing how much my life has changed and how different it looks today. Of course, many things are still the same or similar, but it’s been quite the year of growth, self-discovery, risk-taking and bravery, losses and gains, love and living, stumbles and achievements. I have had moments of true joy and peace as well if those of dark despair and pain, not much unlike any other year in my life thus far, but perhaps more self-aware and impactful. It has been a year that tested my resilience, courage, patience, forgiveness, strength, hope, and my relationships with others and myself. I feel like I’ve physically aged a lot in recent years: my health problems have accelerated, I’ve dealt with chronic stress, and my doctors and I have thrown a number of wrong “solutions” at my misdiagnosed problems. But this year in particular, I feel like I experienced the emotional growth catch-up that had been stunted from trauma, lack of self-awareness, and again, trying to slap an improper and inadequate solution on a gaping wound of a problem.

I had long been interested in prosthetics and providing mobility for those with disabilities. Now that I’ve learned about people on the spectrum’s tendency to cultivate “special interests,” I am fairly certain this was one of mine. In first grade, my best friend had cerebral palsy and I loved being the one who got to push his wheelchair or go to physical therapy with him and watch him practice walking. I thought about ways to design his chair to be more play-friendly so he could engage with me on the floor by lowering a special lever on the chair (this was sketched in markers in my notebook) without needing an adult to lift him and transport him into the beanbag. I wanted him to be able to do it himself. In second and third grade, I constantly drew pictures of a hospital scene that was simply a page chock-full of people on crutches, in wheelchairs, or pushing walkers. I’d draw various iterations of the same scene for weeks and staple them all into a book. I added so many pages that eventually I couldn’t staple it and had to punch holes and tie yarn through it to bind it together. There was a storyline: a central boy that was in a wheelchair and the various adventures he had (though everyone around him except his one friend who pushed his chair were also strangely in chairs or otherwise mobility-impaired. I think the world looks pretty different and somewhat isolating from such a position in reality). I also convinced my best friend to make stick crutches with me and practice going around my block in case we lost legs (the irony of this given my current injury-related mobility issues is not lost on me). I loved going to her house because she had a dollhouse with Playmobile figures, including a wheelchair and crutches that could clip on. I could play that for hours. I also purposely removed the arm from one of my little dolls, and would carry BJ lovingly in my pocket. I had a whole backstory for his struggle as well and would fashion ways for him to do things bimanually—my first prosthetic design.

This childhood fixation probably seems bizarre or disturbing, but hopefully these examples begin to demonstrate my early interest in prosthetics. I had carried a very real frustration with my educational and career choices. Although the root of my poor decisions cannot be entirely pinned to one problem, while an undergraduate, I opted to change my major from the premed track of biology to kinesiology (exercise science). To say I struggled with the transition to college is a gross understatement and, at the time, biology seemed like an insurmountable major that was not worth the fight.

Anyway, after years of schooling and working in fitness, even earning a Master’s degree in Exercise Science and Nutrition, I felt pretty locked into the path I had started down, yet the day-to-day job of being a full-time trainer was not only physically exhausting, it was somewhat unfulfilling for me because I was, in many cases, unable to effectuate the change I wanted to in my clients. All of this desire to do something different increased 100-fold after my attack. I needed to distance myself so far from training so as to lose the constant reminder of what happened and my fear that my vocation would perpetuate another trauma. My fears were eating me alive.

I applied to a host of programs and positions, hoping someone would take me and shake me out of my desperate situation, but I lacked confidence that anything would pan out. I didn’t even tell my husband or family that I was seeking a change, too convinced I’d receive only rejections and too emotionally fragile to deal with that outcome in any way more than in my own head.

It was essentially a dream come true to receive my acceptance into the University of Hartford’s graduate program. It felt like not only my chance to change my life, but actually my chance to “redo” and get back into what I had actually wanted to do, years before my lack of confidence and challenges became impossible obstacles. This was my opportunity to run from the trauma, to free myself from the chains of my current job, and to have a career I was proud of.

The program was fantastic. It was full-time for twenty-three months with some of the best faculty and curriculum I’ve ever had the privilege of experiencing. I learned all about many of the things I had always wondered about and I was busy in such a different and new way, my day taking on entirely fresh activities and people. It commanded significant mental energy and I threw myself into my studies, which distracted me from my trauma pain. It also got me off the couch, where I wallowed in paralyzing fear, disgust, and depression for six months. I met bright peers who distracted me from my reality and made me remember what it’s like to see the world as one of opportunity instead of one of violence and threat.

Most importantly, in the end, the program led me to hold up a metaphorical mirror to myself long enough to really face what was going on and seek the help, and eventual diagnosis, I needed. Unfortunately, it took 22.5 of the 23 months to get me there, but I choose to think that the challenges and experiences I encountered throughout the program were brewing in my brain and sorting themselves into discernible categories with sufficient evidence so that I could make necessary connections to seek the steps toward the help I needed. It is because of this program that I learned of my sensory processing disorder and autism.

Ultimately, not being able to pursue the path of prosthetics and orthotics and engage in this career is a painful pill to swallow, both for my pride and self-esteem but also for my heart, as it’s a job I’d love to do. I was ripe with shame when I had to tell the professors I so respected, the friends and acquaintances still in my life, my peers at school, and even my own family, that I wasn’t going to be able to embark on the next stage—the residency (which I will explain below)—despite my sustained and honorable efforts during the program. It was embarrassing as well because I had been accepted as a resident at several prestigious sites, thanks not only to my achievements in school but to the support and connections from our esteemed faculty. I felt like I was letting them down as I turned down amazing opportunities, like someone declining an admissions offer from Harvard outright, not even to attend a different program. I was saying no to the profession.

I think that was one of my greatest frustrations with the field is the inflexibility of the residency requirement; it was a deal breaker for me. The required hours mandated a schedule that I just can’t contend with, especially in such a sensory assaulting environment. In all honesty, the only aspect of school that I didn’t like was the internship placements each semester. We had to accrue a certain number of hours of direct supervised clinical experience each semester, which took the form of one full eight-hour workday per week and one six-week full-time placement and an affiliated site in the summer between the two school years. The clinicians were all wonderful people and I loved interacting with the patients, but invariably, I found that nearly every single Tuesday (my usual clinical day), I was stricken with nausea, migraines, unmanageable fatigue, throbbing joint pain, and low-grade fevers a mere hour or two into the morning. These symptoms were particularly apparent on days I had to work in the lab, surrounded by loud power tools and machines, giant ovens melting plastic, the offensive and strong odor of carbon fiber lamination and my most hated offended, Siegleharts, a tacky adhesive used to sure up test sockets that must be stirred and stirred to create the correct consistency, all while the toxic fumes are inhaled. It seems that every preceptor’s favorite ask to task me with was, “can you go mix up the Siegleharts?” It was a miracle that I made it through the graduate program’s internship requirement. I had to make up a lot of hours and days for each placement and it took an unfortunate toll on my health and wellness. It started to become so stressful and physically damaging to me that the symptoms would linger into Wednesday and then Thursday and I’d be tossing and turning Monday night in anticipation of the inevitable pain. Instead of being relieved when I’d finally be checked out and back into my car at the end of a full Tuesday, I’d begin immediately dreading the next Tuesday, disappointed that it was now less than a week away. The irony was, as sick as internship day made me feel each week, I was unable to really identify the pattern accurately enough to determine earlier in the program that there was a striking discordance with my health and happiness and the profession’s work environment. For a long time, I was convinced, it seemed to be just a coincidence to me that I was always sick on Tuesdays. In hindsight, I think overtime, part of me was aware, but did not want to admit the issue, lest it become more of tangible truth that it already was. It was safer and more agreeable to try and ignore the glaring issue, offering a wide array of excuses to myself and my questioning friends and family.

Anyway, it’s virtually unheard of for a facility to offer a part-time schedule and compensate by extending the duration of the residency. Even if this were offered, the governing body of the profession’s accrediting agency sets limits on this accommodation and it was barely a shorter day. After the mental and physical exhaustion of the school program, my doctors said it would be wise to take a break and they cautioned me to seriously consider abandoning the path of residency was the only option to certification, which it is. It’s a behemoth of a gatekeeper—an incompatibility with my physical and emotional health needs. The sensory processing problems and the autism fatigue are the greatest offenders that render this impossible.

Then there’s the problem of support. One of the enticing but also apparently unfortunate aspects of prosthetics is that it is a unique and niche profession. There aren’t prosthetists’ offices in every town and even fewer that are certified to accept and train hopeful residents. In fact, in New England, there are just a handful of possible residency sites, which is one of the reasons that landing a good placement is an honor and a highly competitive process. The residency for which I was selected was many states away from the family I so desperately need for emotional support, especially at the burgeoning awareness of my sensory problems. Instead of moving closer to home after graduation, which both my husband and I felt was an important and necessary decision, accepting the residency would have landed us a plane ride away, in Virginia, for a minimum of two to five years.

I initially accepted the offer without hesitation: it was a pretty unbeatable opportunity and the culmination of my work and dreams during my studies. I was certainly disappointed that it was so far away, but I understood this was a definite possibility when I signed up for school, knowing full well, through research, that the scarcity of sites would certainly increase the chance that I’d need to travel for residency. Sitting at home on a computer imagining my life post-degree, two years down the road was so far removed from reality that I couldn’t gauge my discomfort and repulsion to this idea. I was still living in fear of death from the trauma, and picturing a week or month into the future in any realistic sense was virtually unthinkable. I was still unsure if I’d wake up the next morning, and more seriously, if I’d even want to. Every little thing I did each day felt like a major achievement and a surprising accomplishment, and I thought in abstract ideas rather than concrete realistic plans. My whole self-concept and identity was entirely lost in my trauma; I felt like I not only occupied a foreign body, but had a new mind. What felt unknown, I feared. I hated the changes and I longed for my old self, but that’s the thing about some monumentally devastating traumas: to survive them, you have to change. The “old you” had a coveted innocence and peace that is forever lost; at the same time, I’ve learned that with overcoming such a horrific challenge, comes deep and unparalleled strength and courage: the “new me” is braver, tougher, and more appreciative of seemingly small victories and gifts because she needed to be. I used to hate her, but I’m starting to admire her and give her a chance.

As the “doomsday” of my residency start date drew nearer, I started to panic. Words that were initially filled with promise began to form a faint picture of what my residency life would actually look like, nearly one thousand miles from home. It even became clear that Ben would be unable to join me there for “several months,” while we determined if it was a good fit and he could find a job. Even in that less informed stage, we were building in contingency plans, as the track record for my health and robustness has been marred over the past several years, and my ability to successfully withstand the physical demands of a more-than-full-time job were called into question. The sheer utterance of the word “residency” became enough to send me into complete chaos, crumbling into an emotional wreck. I would have full-blown meltdowns when we tried to plan out or talk through the coming months. I have faced many uncomfortable or even dreaded transitions in my life; it’s one of my guaranteed struggles (which is not uncommon for those on the spectrum), but for many of them, despite the disproportionate and overwhelming anxiety that characterized their lead up, in my heart I was excited enough or sure enough that it was the right decision, that I was confident I’d be okay. Not with residency. The notion of it filled my body with a sweeping wave of stifling heat, suffocating not only my physical ease of breathing but my emotional outlook and mood. I’d become diabolically irritable, moody, and despondent. I’d cry so hard that I would choke on my breath or unintentionally throw up my last meal. My sleep, while undeniably restless and problematic since my attack, became punctuated with even more nightmares: a messy blend of flashbacks from my trauma with creepy fantasy scenes from a prosthetic lab in which I had never been. In this way, we discovered my insomnia and my post-attack PTSD were significantly exacerbated with the increased anxiety imposed by the impending residency. Deep in my heart, I kept asking myself: Am I just afraid of change or being away from Ben? Am I afraid to fail? It wasn’t difficult for me to know the answer with conviction. It was difficult to admit that that (failure) was the answer because I so wanted it to not be. I wasn’t afraid of failing in the sense that I thought anything bad would necessarily happen if I did, and it wasn’t a matter of “if” I did, because I knew, without a shadow of a doubt, that I would “fail.” And that’s the operant word here. Fail didn’t necessarily mean I wouldn’t do well at the residency; it meant my body and my mind would break, maybe not literally, but certainly by all measures of practicality. The happiness, improved sense of physical and emotional well-being, and semblance of progress that I had fought and clawed so hard for were still so fragile, yet intensely important for my survival. I didn’t want to risk shaking them off and I was positive that the challenges imposed by the residency would not catapult my growth to even greater heights but would be immensely counterproductive.

As soon as I was brave enough to admit this to Ben, I started feeling like I could breathe again. I was gripped with fear of letting him down; after all, we had moved to Connecticut for me to do the program, sacrificed income and quality of life, and I had been unemployed or otherwise a non-contributing member to our financial state since the attack. School represented the promise of a successful career and a life of less penny-pinching and more affluence. I felt indebted to him and responsible for completing the loop on our investment in a better future by pushing through the residency and beyond to a career as a clinician.

So, I tried to troubleshoot the problem and seek as many alternative arrangements as possible in typical Amber fashion. I’m almost always cooking up some kind of plan or seeking any number of opportunities. As I say, you never know what may work out so it’s good to cast a wide net.

As painful and embarrassing as it was to turn down the one residency, I was fueled with motivation to reconcile the situation. I figured arranging a placement closer to home would negate some of the challenges and make the situation more plausible: a workable battle. My good fortune and hard work landed me another opportunity closer to home, about a two-hour drive and within striking distance of a reasonable commute for Ben’s job, meaning that we could live together. This had all the makings of a more feasible solution, so I again agreed and was temporarily filled with such a gulp of relief that the remaining obvious problems were muted to me. It wasn’t in Virginia and it wasn’t to be tackled in complete isolation, so I was blindly hopeful. At least for a week or two.

The elimination of my paralyzing shame of telling Ben that I needed to amend the plan restored enough courage and self-esteem that I was able to confess to my professors that I had to withdraw my commitment to the one residency for another. I was still filled with guilt, driven by my desire to repay their servitude and legwork to facilitate my success during my tenure in the program, I was disappointing them by not jumping at the chance afforded by the first position. Apologetically, I assured them that I would still work hard and make them proud, bestowing as much honor as I could to the program that so well-equipped me for a bright future in the field. I was eager to progress through the remainder of the required steps to become a board-certified clinician and excited to have an impactful change on the lives of my future patients. The initial relief that my problem-solving plan afforded wore off as quickly as the days before graduating were passing. It was only a matter of weeks before I was to move and begin my exhausting residency. Once again, I was filled with panic at the thought of my impending life. It wasn’t what I wanted because it wasn’t what felt right for me.

I asked my therapist to help me evaluate and understand what was going on. She strongly encouraged me to see my physician and request medical accommodations at the site for some of my health issues. I figured she was right; I had long since tried to force myself to meet all requirements and expectations “normally,” but I had some real and serious hindrances. It was through that process of determining what accommodations would be beneficial yet not incompatible with the job requirements that the sensory processing issues and autism were diagnosed, after a trail of appointments, testing, and specialists were seen. That journey is best saved for another day, but the outcome is the same: I suddenly was given access to the more complete picture of what was going on with me, both at that time, and throughout my life. All of the challenges and confusions began to be met with more clarity. It was both a relief and a burden at the same time. It had taken me nearly 30 years to be properly diagnosed, and when I finally was, it felt like my self-concept was significantly altered overnight. Like the moments of rising after my attack, I suddenly felt like I needed to get to re-know myself, only this time, unlike the attack, I didn’t initially hate the “new” self that was emerging. I realized she needed more compassion and credit for her achievements despite the numerous and clearer barriers to her success. It was the first time since becoming a teenager that instead of berating myself and tearing myself down, I paused and granted myself just the slightest bit of grace with the incredibly stringent expectations that I normally hold myself to. That perfectionist attitude isn’t lost overnight, but it was at least relaxed just enough to give me permission to make the right decision for my psychological and physical needs, and abide by the boundaries I needed to set to respect these needs. I had battled long and hard enough, particularly after surviving the attack, and I just needed to let myself choose the less popular or esteemed route. I had to walk away from prosthetics, at least for some time. My journey of emotional healing from my trauma was only just beginning and my journey towards cultivating an environment and life that supported the needs imposed by my neurodiversity had not yet begun.

Much of this came to a head the Tuesday before graduation. In light of everything going on, my husband and I decided that indeed a residency was not the right thing for me at the time, and I politely and supremely apologetically declined the second offer. I had no alternative plan. The future was a completely blank canvas, save for the dozens of occupational therapy and social/behavioral therapy appointments that were scheduled to begin helping me work on various challenges of the new diagnoses. I desperately wanted to cancel my plans to attend the graduation ceremony. First and foremost, I knew it would be long and boring, crowded and over-stimulating, a recipe for a very Amber-unfriendly event. I also hate attention so I didn’t want to walk across the stage. Most importantly, I seriously questioned whether I deserved to march and receive my diploma, both because I felt ashamed that I wasn’t going to be doing residency any time soon, if at all, and because as much as the new diagnosis helped me see myself in a new light, it also made me feel “disabled” and undeserving of success. I am not entirely sure why; I know that people with all sorts of challenges and abilities can achieve great feats, but it’s different for me somehow. My own self-esteem is so low, and has been for years, that I don’t naturally grant forgiveness for my own weaknesses or mistakes; and that’s a gross understatement to how I viewed my participation in the prosthetics program: a mistake. I felt so stupid for “wasting” two years of my life fully dedicated to a career that was not viable for me. I felt even more stupid for not knowing how to identify and then articulate my challenges. It was Ben who helped me see how short-sighted this blame was. After an emotionally painful conversation in which I was completely vulnerable in how I felt regarding everything going on, Ben helped me see that the program was not at all for naught. In fact, it had saved me. Before receiving my acceptance letter from the program, I had no desire to live and I certainly wasn’t engaging in a life that could be considered living, beyond the basic biological definition. For all intents and purposes, I was so broken and hopeless after the attack, so traumatized and disenfranchised, that I was often mad at myself that I had pulled my body up from the floor after the attack and ultimately saved my own life. In many post-attack moments, I figured it would have been preferable and easier to die. The prosthetics program completely changed that. I not only enjoyed my day-to-day life much more again, but I saw reason and relief for my survival. It renewed the sense that every human should have: that life, even when impossibly challenging, is worth living. When that basic operating premise disappears, it is so far beyond scary that I lack the vocabulary to convey it.

During the program, I re-learned to trust people, particularly men. Despite my social challenges that come part and parcel with the autism, I tried to make friends. Prior to that, I vowed that I never wanted another friend because the risk of a possible attack was not worth the reward, so the valiant effort to be social and make meaningful relationships was a big achievement. I learned to dream again, to love myself and others, and be grateful for my strength. The twenty-three months of hard work and focused studying may not have been leading me to the next logical step on the path, but it did pay me in dividends, just in a different form than most people would have assumed. Ben and I decided that needed to walk for me and for us. No contests are fought in solitude, and this one was no exception. My graduation was as much my own accomplishment as that of Ben’s (or my mom’s). After all, he had been the one I considered when deciding if my life was worth salvaging and he had been the sturdy rock above me, from which he offered an endless number of hands to pull me up and steady me when I stumbled in my physical and then emotional recovery.

As I sat under the large circus tent during my graduation ceremony, I was surrounded by twenty of the most interesting and hopeful peers. Moreover, there were hundreds of excited graduates from other departments, excited to take to the stage and receive their diplomas for all of their hard work. They couldn’t wait to embark on the careers for which they had so long been dreaming of and working towards. Parents, friends, and family surrounded the periphery of the huge tent in countless rows of chairs. There was a dizzying sea of people I had predicted and part of me really wished I had heeded to my wish not to come. Only two of them knew my secret. I didn’t know how to appropriately broach the subject with my peers who were all too excited to be taking the next big step and I didn’t want to rain on anyone’s parade, so I kept to myself, a familiar position anyway.

When my row was finally in queue to receive our diplomas, my heart was racing. I felt like a fraud and once again, I was flooded with feelings of “undeservedness” and shame. I looked to Ben and my mom, who were clearly talking quietly but excitedly that the boring ceremony was about to experience its five seconds of interesting air time. While everyone else’s fear was just that they would trip while walking across the stage, I was worried that someone would yell, “you wasted your degree!” (which, incidentally, is what one of the residency directors shamed me by commenting). When the dean called my name, all of this vanished. Suddenly, I stood tall and proud, as if endowed with the task of proudly receiving my diploma. There are pictures capturing the moments that I traversed the stage. My smile is so genuine and so rich that it appears my whole body is smiling. I shook the dean’s hand with conviction and as I posed for my photo at the far end of the stage, my sole thought was, “good job, kid”—an exceedingly rare self-directed compliment.

Nearly a year later, my life looks very different but I’m okay with that. In fact, I’m generally trending toward increased happiness. I am beyond grateful for the gifts in my life, both in terms of people, opportunities, and my own unwavering ability to eventually turn toxic lemons into the sweetest lemonade. I still have so much healing and growing to do, and that need is not lost on me. In fact, it becomes more clear to me that I bury some of the deepest and hardest parts of my trauma instead of working through them, but I’m getting there. It’s been the most trying and rewarding year in many ways.

I still feel a major loss regarding my prosthetics dream; it remains a devastating heartache. It is a loss; the acknowledgement and acceptance of the fact that it’s not compatible with my current (and likely future) means that that goal is unattainable and I have to re-envision a life that I will be happy with and proud of. And I’m doing just that, one day at a time, with my trusty companion, my copilot, the wind in my sails when my own winds are flagging. The other day Ben so astutely commented that marriage is largely about taking care of one another even when it’s hard. It feels like he’s been dealt an unfair hand, but if anyone or anything has the ability to restore my faith in humanity, it’s certainly Ben’s loyal and staunch support, patience, guidance, and love. Extending beyond ourselves as a cohesive unit, I am also learning to reach out to other family and friends for support and connection; some of the most meaningful relationships over time have their genesis in unfortunate or otherwise strange situations or between unlikely participants so it is good to cast a wide net and accept any and all love and connection offered.

Lastly, I am trying harder to respect and value the person that I am, the needs that I have, and the decisions that will bring me the most happiness, even if they are unpopular or confusing to others or otherwise feel like they are letting myself or someone else down. It seems that is the first requisite to improving my self-esteem and building a life that gives me fulfillment, happiness, meaning, and peace. As Steve Jobs so wisely stated: “Don’t let the noise of others’ opinions drown out your inner voice. And most important, have the courage to follow your heart and intuition.” Right now, I’m happy to be alive, I’m grateful for the life that I have and the people in it, I’m enjoying my job and exploring different hobbies and interests, and I’m hopeful that my growth and strength will continue to create a future that is healthy, meaningful, and rich in the things that truly matter.