“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.

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.

 

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.

 

The Power of Attitude

As a young child, I was remarkably upbeat, happy, optimistic, and hopeful about my future and that of the world. Anything seemed possible and I had wholehearted confidence in my ability to transpire my dreams into my reality. Mostly, I credit my parents for fostering this attitude of wonder and self-assurance; they provided me with ample opportunities to explore the world and my capabilities and never set boundaries or limitations on what I was capable of, even if they had their own (realistic) doubts. I certainly had my fair share of physical and emotional falls and fails, but they never seemed to set me back with much permanent or lasting impact. I had a lot of behavioral problems, particularly in my first years of school and in social situations that my older sisters never displayed, and to say that I presented more of a parenting challenge throughout my entire childhood is a gross understatement. In hindsight, it’s clear that much of my misbehavior, rambunctiousness, and hair-pulling frustrating confusion was a product of my undiagnosed autism and sensory processing disorder. At the time, my hyperactivity, finicky-ness, and even “bratty and immature” behavior was attributed to ADHD and my position as the youngest of three girls. Needless to say, the routine misdemeanors, punishment, timeouts at school, less-than-stellar report card marks for behavior (and penmanship) did little to curtail my mojo and I remained a spunky, relentlessly positive kid.

Something began to shift in the months before my tenth birthday. As if double-digits inherently ushered in the cessation of innocence, verve, and faith in oneself and the world, my mindset and affect began to dramatically shift. In the manner in which a windup toy peters out as the duration of its chatter and clatter lengthens after the initial spinning charge, my zest, vigor, and sunny outlook faded in favor of a restrained, timid demeanor.* Doubt replaced hope, worry and anxiety trumped my carefree nature, pessimism extinguished optimism, and my self-esteem plummeted. Within a few months, depression clouded out the very happiness and joy that had previously bestowed upon me the nickname “the happiest girl in the world,” used lovingly, but earnestly, by my dad. A switch had been flipped and my internal world, which colored my external one, changed.

As with most things which are rarely black or white, solely good or bad, some changes brought on by this metamorphosis were beneficial: my behavior, now so reserved, no longer landed me at the back table or time-out position at school, instead, teachers remarked that I was well-behaved. The more I restrained my body and physical hyperactivity and conformed to the expectations and qualities of a mature and “good” student, the more wildly and feverishly my brain ran. There was a constant barrage of anxieties, questions, troubles, fears, and even panic. Sure, there were also hopes and constructive thoughts, mulling over things learned in school, observations made out and about, and intellectual curiosities much like those that characterized my kid brain, but it became harder to hear these over the sheer volume and strength of the pessimistic thought reel. Little did teachers know that as I sat there studiously at my desk, the littlest one in the class with a big brain and bright responses to assignments, I was filled with internal angst, confusion, and sadness. My “proper” behavior was actually just paralysis induced by depression devouring my energy and ubiquitous pensive concerns. Shortly after, I developed an eating disorder that proved to be a formidable foe for the next eight years. The depression and anxiety fueled the anorexia, which in turn, sunk me into more severe depression and calamitous anxiety.

I wish I could say that some other momentous birthday or other occasion caused the same radical about-face in my outlook as did turning ten, but truthfully, nothing had been as exorbitantly formative in changing me. With that said, particularly in recent years, I have found a better balance and allowed some of that positivity, hope, and verve to weasel its way back into my psyche and shine through the constant cacophony of worries, bleak and dispirited thoughts, and emotional pain. My inner strength and confidence have mounted as I’ve triumphed over difficulties and become a curious and dedicated student of myself. For me, self-awareness has had an instrumental role in increasing self-compassion. I’ve even surprised myself in the authenticity of my mental fortitude and strong drive to seek and recognize the silver linings in spite of some tremendous adversities I’ve faced in recent years. I’m proud of things that I’ve overcome and the resilience of my positive attitude when it would be so understandable to completely crumble.

Some days, in accordance with the idiom “fake it ’til you make it,” the optimism and emotional fortitude is somewhat of an act, a tiring attempt to feign stability and tenacity. Although exhausting, there does seem to be some payback from this practice, but thankfully, sometimes the attitude is genuine. My foot injury is an example of the former turning into the latter. After it seems like surgery was in evitable, I experienced slight improvement in the pain and swelling after weeks of nonexistent progress. I have long heard that having a good attitude through illness and injury is scientifically proven to improve healing and perhaps my desire to avoid surgery was so primal and deep that I truly convinced myself that my foot was healing. It’s not. I have objective evidence from imaging studies that fail to demonstrate an iota of progress; it’s exactly the same as it was four months ago. At first, I couldn’t believe the results; I was so assured it was physically healing because my conviction in maiming a positive outlook became so powerful. I cancelled the postponed surgery date in favor for the conservative route.

Once the initial shock delivered by the MRI’s report on the stagnant state of my foot, I sat with my feelings. In the quiet of the predawn hours where all my clearest thoughts reside, my pride and optimism stripped away, I felt the throbbing pain, the familiar ache from the initial months of injury. The pain had not just returned, it had never really gone away. I had just become committed to silencing it in hopes of encouraging my body to actually resolve it. It looks like I will need the surgery after all.

Of course, I am very disappointed I will have to have the surgery and because I have medical anxiety, I am certainly anxious for that day. However, although I was mad at myself a couple of days ago for my inability to honestly assess the pain and progress of my foot, I choose to remain proud. It’s not easy to be hopeful and positive in the face of a bad injury, let alone the larger obstacles I have faced. As the sands of hopefulness and confidence ran out of the hourglass that ushered in age ten, I lost so much more than just the innocence of childhood. It’s taken two decades to build back some of what I’ve lost and so I will honor and admire all of the positive attitude triumphs, enthusiasm, and growth mindset moments that I can cultivate.

 

*The reason that turning ten served as an impetus for such change is complicated and I’m not sure I fully understand it, but I will attempt to evaluate it at a subsequent time.

Small Victory

I had a medical appointment victory yesterday, which was especially welcome after a stumble on Wednesday, where, Ben accompanied me to my appointment, but I still left feeling overwhelmed and had a post-appointment stress meltdown in the car.

Yesterday, I not only went alone, but I saw a new doctor at a further hospital (I hate driving, so this was a triumph in and of itself), stuck out the hour-long wait for my behind-schedule appointment (all while getting a worse SPD- and anxiety-induced headache), and then talked to the new doctor. He even said I was “amazingly self-expressive and precise” in my ability to discuss my problems. What are the chances?!

After initially getting off to my typical monosyllabic I-forget-why-I’m-here/I’m-too-overwhelmed-to-talk start, I pulled out my phone and showed him what I had written down: “I am on the autism spectrum and I get a little nervous and shy but I’m really glad to be meeting with you because I have not been feeling well.” Following this line, I had written a list of my current symptoms. Thankfully, he also had my hefty medical records, which he had taken the time to review before I even entered the room; I guess this is why this guy is worth the drive and the wait! Upon reading my prompt, he immediately said he’d start with the talking and when I was ready to respond, I could jump right in.

His method worked fantastically. At first, we sort of briefly addressed the pertinent highlights in my chart: I confirmed them with a nod, and then verbal affirmations, and after a few minutes, with coherent elaboration and explanation where warranted. Before I knew it, I was discussing my current problems in language that made sense to me. He chuckled as he took notes while I spoke. At first it bothered me and then I asked him what was so funny, to which he replied, “You describe things in a unique way and very directly. You admit a lot of things people won’t and it’s refreshing how candid you are.” He apologized for laughing and said he wasn’t trying to laugh at me. I assured him now that I knew why he was laughing, I wasn’t at all offended and to “laugh away because I’m a bit of a weirdo and have no problem admitting my weaknesses.” That seemed to seal the deal in assuring my comfort with him and after that, we had a fluid conversation and I even allowed him to examine me—a process that is usually like wrestling an uncooperative toddler into a snowsuit because I don’t like to be touched.

This doctor not only had fabulous bedside manner and admirable patience, but he was also bright and action-oriented. Too many times it seems like doctors just shuttle me from specialist to specialist or test to test without actually interpreting anything or making a treatment plan besides either taking the “wait and see” approach or the “go elsewhere” one. Although this doctor is sending me for more tests and referring me to two other specialists, he gave me two diagnoses after reviewing the tests I’ve already had and will follow up with me in three weeks after the other information is received to complete the necessary picture for a treatment plan.

All in all, I’m really glad that my phone prompting approach worked and that this doctor had the tools and time to work within my needs. I’m also proud of myself for sticking out the wait because I got paid back in dividends with quality care. Prior to the appointment, as I waited in the loud and stressful waiting room minute after minute beyond my scheduled appointment time, I texted with Ben about how desperately I wanted to leave and I told him I was planning to shortly. After I was weighed and the doctor was entering my information, I texted Ben, “Ugh, just now getting in.” Of course, as the doctor was scrolling on my phone to review my notes, the text alert from Ben saying, “finally!” flashed on the phone’s screen. The doctor said, “someone named Ben just gave you an enthusiastic ‘finally’!” I said, “That’s my husband’s response after I complained sorely about how I wanted to bag this whole thing because I was tired of waiting.”

He laughed. I laughed.

As I left, I emphatically thanked him for helping me and I said, “I’m not pandering to you but something in me knew you’d be worth the wait!”

I do think I fell into the hands of a competent and compassionate provider but I also think my phone strategy and my bravery helped me in this interaction. I left feeling completely exhausted—even more so than usual after an appointment—but instead of being frustrated, more anxious, and confused, I felt informed, confident, and proud.

 

Am I Safe? Are You Harmless?

Yesterday, at urgent care, I had my first trauma-related mini panic attack in a long time. It used to be a disturbingly frequent problem but with therapy, time, and courage, I’ve started regaining trust in men. I’m now able to make a critical distinction: not all men are likely perpetrators of rape or attack. Most men, like most women, are good people trying their best to lead honorable and meaningful lives (or at least not criminal ones). My attacker was the exception to the rule, not the rule itself. After the attack, I feared every man, even ones I knew (except a handful of close friends or relatives). As such, any time I was in close proximity to a man, especially in secluded or isolated environments, I’d panic. My brain would flood with worries: would he touch me, hurt me, have a knife or weapon on his person, hate me for some unknown reason or have some other motive? Was he getting too close to my body? Was there an exit close by? Physical symptoms would mount just as rapidly in tandem with my spiraling thoughts, racing heart, dizziness, a feeling of facial flushing then rapid draining of color, whispers of nausea building to overwhelming sickness. Worse, as if erasing the months passed since the trauma, I’d feel physical reminders of the wounds I had suffered, as if still etched in gaping scabs and swollen bruises on my skin. Even when I’d have flashbacks while doing everyday activities like driving, sitting in class, or grocery shopping, I’d re-feel pain from the injuries I suffered during the attack sort of like when you see a graphic scene in a movie or real life when someone incurs a serious injury and for a fleeting second, you grab that same body part on your own body as if recoiling in reactive pain and verifying your body is fine.

Anyway, for the first year after the attack, any encounter with an unfamiliar man catapulted me into panic or flashbacks. The reaction was so automatic and so dramatic that I found it very limiting. I never wanted to find myself in a situation where I’d be one-in-one with a man or the only woman in a group. So, I stayed home. I avoided asking my male professors in my graduate program any questions during their office hours or while my peers were filing out of class, even if I was clueless about assignments or concepts. Email was my only vehicle of communication. I couldn’t risk it. (Surprisingly, a number of my professors turned out to be instrumental in helping me defeat this crippling anxiety by, of course, being so friendly and harmless.)

Eventually, I got over it by slowly loosening my grasp and gradually letting the fear slip away, by taking small, manageable steps at first, restoring some confidence, amassing successfully safe interactions, and continually trying to expand the “risks” I took to conquer more and more normal situations.

Yesterday, my encounter with the x-ray tech caused all the anxious feelings to flood back in and swell to a critical mass in my brain. With the door shut behind me, I felt mildly nervous, but with all my injuries in the past couple of years, it was certainly not my first time post-attack in a closed room with a male technician; I can think of at least five this year already! Perhaps it was slightly more anxiety-provoking because I had on a gown with no pants or underwear. I don’t know if this is inappropriate to admit or helpful to those with SPD but I can’t wear underwear. I’ve tried every kind imaginable and nothing is comfortable. Like socks, something seamless may first seem tolerable, but then suddenly, it becomes a screaming impossibility to handle. I’ve been known to stop dead in my tracks while out and about and frantically rip my shoes off to peel away my socks when the sensory threshold is surpassed. I rarely see it coming, but even in January, among the icy sidewalks carved into knee-high banks of snow, I’d plop right down and remove my boots to free my feet from a sock: trudging back home with cold, wet feet was still preferable to suffering the offending sock. I imagine this same solution for uncomfortable underwear is beyond socially acceptability, so it’s better to start with nothing! Luckily, the types of pants and shorts I wear and of comfortable fabrics and loosely-fitting designs (though they leave much to be desired in terms of fashion!).

All this is to say that I ended up on the x-ray table with no pants or underwear. A thin, gauzy white gown was my only shield. I lay there, staring up into the machine’s camera arm, my own arms folded over my chest as instructed waiting. Tim, the technician, tinkered on the computer to enter my demographics. With the light out, my heartbeat starting accelerating; first, it was hardly noticeable, but with my hands over my chest, I quickly realized that it was not only beating quickly, it was also pounding, visually displacing my hands up and down with each beat. Relax, I told myself. When Tim emerged from the small closet containing his desk and computer, my ears started ringing and I became dizzy. “Are you OK?” He asked. I nodded yes, unable to speak, but my spooked eyes were a tell that I was lying. “You are very crooked on the table,” he commented. “Can you straighten yourself out?” As I have terrible kinesthetic awareness and body position sense, I am never surprised to hear this and have received similar instructions almost every time I’m at an appointment. I tried my best to align my body on the table. He started gently pushing my shoulders and straightening my neck and then my feet to position me appropriately for the picture. Like a reflex or the pop of a Jack-in-the-box, my limbs recoiled into a tight tuck position over my trunk to avoid his touch. “You’re fine! I’m just getting your spine lined up here. Don’t worry I’ve done this for years!”

I pleaded with my mind to relax. I didn’t want to feel afraid of him, and logically, I knew that he was totally harmless. In fact, I felt guilty even having unintentional anxieties about the situation. We tried again to situate my body as well as possible and then he swung the overhead camera into its designated location. He reached over me to palpate my iliac crests in tandem to verify proper positioning and a level pelvis. This is it, I thought. I squeezed my eyes as if to will myself out of the situation and transport myself to safety. But, I was safe. Just as he should be and just as he should have clearly seemed, Tim was a harmless healthcare worker trying to do his job in providing necessary medical images for my care. He retreated to his computer command station, told me to hold my breath and not move, and snapped an image. As he repositioned me for the next series, I was visibly more relaxed, and a wave of relief came over me, not just because nothing had happened and I knew that I was safe, but because ultimately, I knew the whole time that I was in good hands but my anxious reaction seemed entirely out of my control. I was embarrassed by it the moment it began stewing, and struck by how unfamiliar the reaction had become to me—a testament to the vast improvements I’ve made over the past two years. What was once as natural and automatic as turning my head when someone says my name has gradually become a faint memory, an abandoned instinct like a long-forgotten nickname whose familiarity only resurfaces years later when you hear it again.

It’s easy to feel displeased with my behavior/reaction during the imaging because it feels like I must’ve taken steps back. I’m hoping it makes sense to simply blame it on the stress and frequency of my recent medical appointments. I also choose, in this situation, to recognize the progress I have made. The encounter served as a helpful reminder of how far I’ve come, how unfamiliar and removed I felt from those once-pervasive worries, and how naturally and normally I now face everyday situations without the looming fears of getting victimized by every passing man.