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!

Image may contain: shoes

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.

 

“Are you mad at me or something?”

“Are you mad at me or something?”

This is a question I’ve rarely, if ever, needed to pose to a doctor, until today. After months of waiting, I finally got to see a new primary care doctor since my doctor, although fantastic, is too far away now that we have moved. There is a saying about how all good things are worth waiting for but today certainly proves that the contrapositive is not true. This doctor spoke to me as if I was a defendant in a lengthy trial for an especially despicable crime. Granted, I struggle to accurately read tone, but my guess is that nine out of ten patients would have felt equally criticized, judged, and made to feel ashamed. For example, consider the following two questions with identical verbiage but different stresses, which, in my opinion, are received very differently:

  1. “So all these people in your family have some anxiety and depression? Wow.” (And imagine that transmitted with a “something is gross” look on the speaker’s face).
  2. “So, all these people in your family have some anxiety and depression. Wow.Wow is not needed and comes across poorly—like you’re unbelievable or some awful and freaky anomaly.

Depression and anxiety often have a genetic component anyway, so nothing about it should be “wow.” I was also told that metal health was not going to be discussed: too bad because that’s one of the two chief complaints I put under “what brings you here today.”

After I asked her if she was mad at me, without looking up from her notes said, “No. I don’t know you.” She continued to make notes. The words hung on the thickness of the humid air, painfully slow to dissipate.

“Oh, because you seem to hate me or something,” I added, as a way to justify my question.

Nothing. Then, eventually, “No. I have never met you.”

True, but it did not really address my impression and concern.

I desperately don’t want to go back there but I’m not sure where else to go. I’ve also heard that one of the doctors in the practice is supposedly very nice, so I want to switch but I’m not sure if I can and I feel too shy to ask. Sometimes I need a few days to bounce back and get the gumption to take the troubleshoot and take the next step. For now, it’s too raw and upsetting. Nothing got accomplished at the appointment and now, after months of waiting, I probably have to start a new search wait all over again.

 

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.

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.

Hail

I self-soothed myself through the hailstorm last night, which, given my heightened nighttime anxiety and PTSD, I consider a notable win. I woke suddenly as it pelleted on the roof and ricocheted off the air conditioner jutting out from the window. The pinging and clanging was jarring and so unfamiliar that I was unable to categorize the noise as a weather-related anomaly, let alone specifically identify it as hail. I tucked into a ball, hugging my knees to my chest and listened. My frantic mind feared combat, an attack from an enemy, some sort of dangerous monstrosity. My muscles tightened and the inside of my closed eyelids flashed a fury of alarming reds and oranges as if staring into the rotating siren light of an emergency response vehicle. I fought the panic by trying to conjure up peaceful images and relax my muscles with each successive exhalation, employing progressive muscle relaxation techniques I’ve been practicing every morning. The sounds only got more disruptive and bewildering and although I was able to harness my worries and prevent continued escalation, I remained engrossed in concern, perched on the precipitous of sympathetic fight-or-flight.

One issue with auditory processing attributable to SPD is a pervasive difficulty in locating the origin of a sound. I can hear everything just fine; in fact, I have an extremely keen sense of hearing, but I often am unable to identify what the noise is or even what direction it’s coming from. This greatly complicates my ability identify and classify the sound, which heightens my anxiety because it’s not clearly evident if it’s innocuous or dangerous. (When in doubt, my brain errs on the side of caution and assumes danger.)

Last night, as the erratic banging continued, I pulled out my phone to try and put on a calming video for more engaging distraction. I noticed the alert on my weather app and quickly discovered that we were amid a hailstorm. Crisis averted.

I am much too light of a sleeper to sink back into sleep while the racket continued, so I relaxed and watched my show until the torrent was over and the more gentle rain lulled me back to sleep. A year ago, this type of unprecedented and unusual calamity would have sent me into an inconsolable tailspin. Even if I had rationally deduced the cause of the noise was innocuous as hail, it would have been nearly impossible to quell the initial panic and calm myself back to sleep. The hopes for additional rest would have been abandoned with the first weakening pitter-patter. The remaining hours of night would have been spent remembering the jarring noise, the resultant uneasiness, and the range of possible (and impossible) dangerous sources that could have generated such terror.

But not last night! Last night was evidence of my improved self-control, command over my previously-unbridled anxiety, and coping tools to manage startling situations.

Update on the Foot Saga

There are conflicting opinions about my foot. The doctor I’ve been seeing since February about it thinks it has not healed at all. Last Monday, in what can only be described as a bizarre and upsetting appointment, he told my husband and me that there is no evidence of healing and that surgery now is no longer an option. It was as if he was completely reneging on his prior assertions that surgery would be the only way to get it to heal, now he was saying because there was no healing, he was not going to do surgery. This paradox and contradiction completely confused both of us. Ben took the mature higher road and tried to ask very basic clarifying questions to ensure we understood his flip-flopped opinion. I sat there melting down with tears and sobs fretting that “I’ll be in a boot until I’m 40!” The surgeon completely ignored me and only shrugged at my husband’s questions. Ben, seeing that I was unraveling, said, “yeah so I mean if it doesn’t heal in another year or two you still wouldn’t do surgery to fix it?” He stopped shrugging, paused, then said, “maybe after another year.” Then he said he’d see us in another eight weeks and walked out. 

Like a barnacle on a sea rock, I clung to Ben and wailed about my frustrations and that the doctor didn’t want to help me. Although my response was emotionally over-dramatic, the stress of the appointment, diabolical nature of the doctor, and his unwillingness to answer our straightforward questions met at an overwhelming head. Even calm, cool, and virtually unperturbable Ben said, “this guy isn’t our doctor. He wouldn’t even explain anything.” Then like a mother duckling, he led me out of the office, trailing behind in residual sniffles and tears. 

I spent the rest of that afternoon trying again to find other viable specialist in the area. I made a couple of appointments and tried to table my anxiety and frustration for the rest of the day. Not easy. As usual, I could barely sleep.

I received a phone call from one of the offices I had contacted by Tuesday afternoon. She had a cancellation on Friday in Connecticut, a distance I felt reluctant (but able) to drive. Friday, I drove myself down and met with the new doctor. He had a vastly different opinion and equally different mannerisms. He took the time to explain things to me, actually evaluated my foot with clinical tests instead of solely relating on imaging reports, and a contrary treatment plan. “It’s basically healed,” he asserted. “There’s still some residual swelling in and around the bone but it’s essentially undetectable.” He encouraged me to start weaning out of the boot and resuming low level activities. He even said he thinks I could be back to running within a month, quite a contrast to the other surgeon’s prognosis which was, I wouldn’t be running again for a year or so, if at all. After all, he didn’t think running was a healthy activity for anyone. Armed with a more optimistic prognosis, I headed home in much better spirits. 

Unfortunately, that night while lying in bed, my foot had a more pronounced ache than normal. I had not even removed the boot for walking yet and it already seemed worse. As anxiety consumed my thoughts, we called the answering service (something I never do). To my pleasant surprise, the operator connected us with the doctor right away who assured me this is somewhat normal because he “really firmly manipulated it to assess the function and clinical symptoms.” He recommended icing it, taking anti-inflammatories, and keeping it in the boot the next three days and then resuming his purported plan. This made sense to me since we did do aggressive assessments after the conservative evaluation revealed nothing painful or abnormal. With the connective tissue disorder I have, it’s also normal to have tendon and ligament dysfunction coupled with extremely tight muscles, so he hypothesized that some of the calf raises and foot mobility against resistance had merely aggravated my muscles and tendons in the area.

I am optimistic about the treatment, care, and plan and delivered by the new doctor, but at the same time, my hesitation to remove the boat and start walking is rational. Not only has it taken so long to get to this precarious point of potentially healing, but the blatantly contradictory advice begs the question as to who is right and whom to trust. The answer lies within me. It is my responsibility and within my control to carry out whatever I deem best. It’s my foot and I’m the one who is experiencing the injury. More so than ever, I must listen to my body and pay close attention to my symptoms and needs. I plan to try carefully weaning out of the boot as instructed all while directly focused attention toward the area to monitor the physical response. I must strike an informed balance between heeding caution and restraining my anxiety so it doesn’t pollute my assessment. I pray that it has healed and can handle incrementally more sneaker time, but I am mentally prepared to dial it back if need be. This entire injury has been one of the most trying exercises of patience, maintaining faith and hope, and discipline. There have been more than many moments where I was ceded that I’d never walk again, let alone run. The future is still enshrouded in mystery, but the ominous gray cloud that used to conceal the bleak outlook portended, now looks lighter and brighter. My fears and worries are not gone, but they are better balanced by optimistic hopes for restored function, painless miles, and endless smiles.

Interview

Interviews rarely scare me. I’ve applied for hundreds of jobs over my working lifetime and gone on dozens of interviews. This is not hyperbole. One could argue this has largely been a waste of time, and sometimes it has been, but it has also helped me amass a ton of experience answering and asking important questions and diffusing the nervousness inherent in such meetings. Most of the time, I feel so practiced and familiar with the questions because they are often predictable ones I’ve previously tackled. I seem to be diabolically self-aware: uncannily so in certain aspects of my life and beyond blind (if such a condition exists) in others. Luckily, the former tends to apply to employment-related screening questions. Akin to how I study, catalog, and memorize social behaviors and expectations, I readily store and retrieve informative and eloquent responses to questions I’ve previously encountered. Even under pressure, I can grab from memory and regurgitate an appropriate response. For this reason, interviews don’t rattle me. Usually.

Yesterday, was an exception. I was confidently navigating a video conference interview for an interesting part-time job I happened upon in my current job search. (Even though I have a job that I love, I usually keep my eyes out for appealing and potentially viable opportunities because I’m an independent contractor so one of the few downsides of my position is its lack of security.) The questions were clear and I answered them comfortably. Admittedly, I did have more anxiety surrounding this interview than normal because the employer is a professional I’ve looked up to for a long-time, unbeknownst to him. His work is iconic in his field and he’s as much of a celebrity to me as Brad Pitt or Jennifer Aniston is to most (or whomever is hot these days!). I’ve followed his work religiously over the years and so to actually connect one-on-one, even in interview style, felt like an amazing and exciting opportunity. Of course, he knows nothing of me because I have no measurable public persona or impact, and certainly not one that would have spread to him. After the initial fangirl nerves reflective of being in the (virtual) presence of my guru were swallowed, I felt giddy and lucky to have the time to connect. This excitement lent a palpable energy to the conversation and somewhat of a natural rapport was quickly established. I figured this would bode well for my candidacy for the position because I seemed engaged, attentive, and genuinely eager, which I absolutely am. Then, things rapidly veered South: an unprecedented question.

“Tell me one thing about you that I can’t get from your resume or cover letter?”

It seemed like a fair, and interesting question, but it caught me off-guard. While I had been all too quick to answer the other predictable questions rather expressively and confidently, I took my first long pause and inserted the time filler, “hmmm…good question…” then repeated it as if asking myself the same thing.

I knew what I wanted to say (perhaps the elephant in the room of being autistic or my crippling PTSD and anxiety?), but I felt that would instantly quell my chances at the position and was too complicated to divulge without ostensibly trying to defend myself as still a capable worker (it’s amazing how the prevailing opinion is that these “issues” would make me a subpar employee).

It may have been the pause, the flash of panic that graced my face, or some tell sign I obliviously revealed earlier in the interview, but in my pause, he added, “you know, anything personal like a challenge or condition you face or something you’ve learned about yourself.” Does he already know? Is he goading me to self-identify? I wondered.  My face instantly glowed a hot red, like when your using the Paint app and select the “fill” or “dump paint can” icon and the entire figure is flooded with color. Don’t blow it, I pleaded. My entire operating vocabulary was suddenly locked up and the only words floating within reachable grasp were those that most hopeful job candidates would keep far from any resume: autism, anxiety, weirdo, PTSD, raped-and-ruined, depression. With each half-second that passed, I could feel my mutism mounting an aggressive offensive, so I picked the least “incriminating” of the limited options still available to me, “depression!” I blurted out as if it were the solution to the final puzzle on Wheel of Fortune. Say something else, I begged of my brain. “Uh, I have chronic depression.” That doesn’t sound good I thought. I was afraid to watch his reaction on the screen but forced myself to make momentary eye contact with his video. He shifted, perhaps uncomfortably, and waited to see if I was going to say more. Nothing. “Oh,” he added, as if hearing awkward news on a first date when you’re trying to be polite but secretly disappointed or disgusted.

The energy from the entire conversation plummeted and was swallowed by each of our computer screens, leaving a vacuous and stale hum of the remote connection. Whereas before, we were volleying eloquent ideas and relaying enthusiasm with each pass, the silence now was stifling. I seemed entirely unable to even formulate a coherent sentence to thank him for his time and end the call. I considered simply x-ing out of the window and blaming technical difficulties, but God threw me a bone. I took a few deep breaths, aware that my back was now sweating under my sweater, and found my voice: “yeah, I have chronic clinical depression and it’s something I battle on basically a daily basis, but I’ve learned to cope and keep it at manageable levels.” Good start, I thought. “It’s like any problem. It’s simply a challenge that I’ve been dealt but it makes me stronger and as I’ve matured, I’ve discovered productive ways to handle it.” Give an example, I encouraged myself. “Like my dog,” I offered. “I’ve found so much joy in spending time with her and I feel like I connect with her in a meaningful way. There’s something very grounding about pets and caring for her brings me happiness.” Call in the generators. It was as if I summoned the energy back and resuscitated the conversation enough to at least give it a moonshot of a surviving chance. “I love my dog too,” he offered. “What kind do you have?” “A golden retriever!” He said. “Awesome!” I said, which, although not the most prolific response, was better than nothing.

Shortly after, we wrapped up the meeting in a slightly less awkward fashion. What I figured was just going to be a rote interview, turned into more of a stressful stimulus that I envisioned. My uncharacteristic nervousness left me surprisingly sweaty and I had to rinse off and completely change outfits before moving on to the next thing!

The whole experience made me wonder why it’s so hard to share personal information about the struggles we face. Everyone has some challenge, so I’d think it would feel more natural, or at least less mortifying and self-sabotaging, to admit them. I partially blame my self-esteem and imagine it’s never as opportunity-killing as I imagine it to be, but I think the stigma surrounding mental illnesses and autism is still a reality and such information can hurt one’s chances for a job or a second date or whatever the objective might be (save for therapy?). I have vowed to be more upfront and try to increase awareness, so I’m hoping that if this job doesn’t pan out, or even if it does, down the road, I can be more open with any self-identifying questions and not fret so frantically about the implications. Especially if I wait until I’ve demonstrated my value and command of the position, it shouldn’t hurt my reputation and instead, hopefully would dispel some of the incorrect perceived weaknesses or conflicts with my viability and merit as an employee and person.

 

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.