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.

Web

I have chronic nightmares. Sometimes they are so realistic and frightening that my brain won’t let my tired body go back to sleep afterward for fear of being transported back into the horror. Usually, they include pieces of my trauma or at least feelings or phrases that I had or heard during the attack. It’s surprisingly hard to get someone’s evil words out of your head even when they treat you utterly inhumanely and you don’t respect their opinion. Not every nightmare necessarily includes my attacker, even if it does include reminders of the attack, and even still, not every nightmare relates to that. My therapist says that this type of gross sleep disturbance, even long-term, is normal in these situations.

The other night, my sleep brain had me in the familiar supine position with the feeling of a suffocating body cracking down on my ribs. I couldn’t see his face, but I had the knife blade and choking sensation. Thankfully this time, unlike in real life, I was being tortured over something that now seems comical: that I had never read Charlotte’s Web and didn’t know the story. I woke suddenly in my usual gasping-for-air panic, relieved that it was unrealistic enough to know it was just a bad dream and that I wasn’t going to live through another torturing just for failing to read an iconic children’s classic.

Still, I decided perhaps this was a subliminal message that I should read the book; after all, I’d give anything to make the real memory go away, and since I can’t seem to do that, I can try to resolve the petty issues in some of the less-severe nightmares.

As unpopular of a sentiment this likely is, I generally do not enjoy reading literature. I’d venture to guess that 49 times out of 50, I gravitate towards a nonfiction book over fantasy, science fiction, historical fiction, or any type of creative literature. I seem to really struggle to imagine things that are not portrayed extremely realistically; even then, if the context of the book is unlike anything I’ve ever experienced in at least some tangential fashion, it’s frustratingly challenging for me to relate to or get into. Luckily, perhaps due to my strange empathetic skill, I do seem to possess a strong innate ability to see similarities in many superficially different topics. Many struggles have the same universalities.

For the record, there certainly have been many great literary works I’ve enjoyed, but the ease, speed, and appreciation with which I enthusiastically devour nonfiction pieces far and beyond outshadows this number. I think it has something to do with the fact that I am essentially unable to picture anything I’ve never seen. I can listen to the most detailed description of something and absorb all of the words and their essence, but be completely blind to conjuring up a mental image of that description. Consequently, it’s hard to develop relationships with the characters or storyline. I imagine that my substantially challenged ability to read facial expressions and understand people also gets in the way of bonding with or at least following the thoughts, emotions, and decisions of characters. When discussing my evaluation results with the neuropsychologist, he said this can be a challenge for those on the autism spectrum; it’s not a complete lack of creativity, but more of a difficulty imagining a different reality. You’d think then that I’d be fine watching movies since the ambiguity is removed or the guesswork is taken out of imagining how things look, but I mostly only enjoy documentaries, food TV, or shows where you get to know the characters so well over time that their mannerisms, expressions, motives, and language, become more understandable. In any fantastical book or even fictional storyline, I find myself completely lost. I’m unable to follow the plot or keep track of the characters in most cases because I’m missing crucial pieces of information.

I don’t know if this is the reason that I’ve never read or seen Charlotte’s Web. Since the library had it on the shelf and it looked short enough to squeeze in between various obligatory readings, I figured it was worth a shot.

I liked it. I was astonished at how much. As I suspect most people do, I cried when Charlotte died. In retrospect, perhaps this is the reason my parents didn’t encourage me to read this book when I was younger. Although it’s presented as a children’s book, it not only deals with many adult themes, but it also is emotionally mature. Ultimately, I think that’s what makes a good piece of literature: it has a lasting impact on a person and it can be universally understood across the ages or types of people (even if it’s fictional!). I was overly sensitive and emotional as a child-which, apparently is a quality that I have not shaken-and after physically throwing my body on the floor and flailing my limbs in a fitful tear-filled meltdown after the dog dies in John Reynolds Gardiner’s Stone Fox, I’m guessing my parents steered me toward more soundly upbeat stories. I guess I wasn’t ready for the pain and sorrow of reality…

Charlotte’s Web deals so beautifully with the themes of friendship, sacrifice, the circle of life, ingenuity, love, loyalty, and growing up. Despite the significant need to suspend disbelief and buy into the conversations and relationships between the animals themselves and Fern, I found it surprisingly easy to relate to the different characters and imagine it enough that I could follow the storyline (it helped that it was basic enough because it’s intended for children!). I wonder if the fact that I seem to understand animals better than people in real life played to my advantage as well!

While I found many powerful quotes in the book, particularly pertaining to friendship (and one depressingly relatable one from Wilber about unhappiness and loneliness) my favorite of all was delivered by Fern’s pediatrician, Dr. Dorian, after her mother asks him if he had heard that the spider was spinning words in her web.

He replied: “I don’t understand it. But for that matter I don’t understand how a spider learned to spin a web in the first place. When the words appeared, everyone said they were a miracle. But nobody pointed out that the web itself is a miracle.”

How true on so many levels. For me, it was a reminder to appreciate the small things—the magic in the mundane—and to not always be chasing something bigger and better. Sometimes, the very best things are the things we easily take for granted and it isn’t until there’s a blatantly clear sign of something miraculous that we pause enough to consider that the simple act itself—the thing that’s been there all along—is something wonderfully special as well.

(Nature is amazing.)

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.

 

Lonely

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

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

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

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

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

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

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

 

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.

I Keep Falling

I keep falling. In the past week, I’ve had three rather major falls of increasing severity. In the worst, I fell all the way down a flight of stairs, save for the very top step. I simply stepped down onto the first step and before I knew it, I was thumping down the entire flight on my back and landed with a big thud at the base of the stairs on the hard floor. My tailbone and sacrum have not yet forgotten nor forgiven the incident. In fact, I had to spend over two hours in urgent care yesterday, after deciding that instead of slowly resolving, the pain seems to be steadily progressing to intolerable levels.

I’ve mentioned before that SPD causes issues with balance, proprioception, body control and kinesthetic awareness, and overall stability. Therefore, I’m predisposed to falls and accidents and my physical history confirms this correlation. I’m guessing that the inattentiveness, impatience, and hastiness inherently symptomatic of my ADHD also contribute to the unintentional recklessness that characterizes my movements. I’m like a spastic marionette, blindly operated by forces outside of my conscious control or ability and with seemingly bizarre, jerky, rapid, and unexpected actions.

My movements epitomize clumsiness and klutziness; they are erratic, disorganized, hasty at times, and sporadically and unpredictably controlled and executed. The only time I step into a veil of grace and agility is when I run, although, I’d be remiss in failing to mention several catastrophic trips and tumbles; I tend to have to steer clear of trails and uneven surfaces, despite their health benefits and forgiveness of the demands on the anatomical structures. I’m so accident-prone that if there is any potential risk of injury or malfunction with some sort of task that demands movement—particularly those requiring any degree of coordination—even if exceedingly unlikely, I’m one of those unlucky few that will experience it. I’m probably why warning labels have to exist on certain products or on informed consent forms for certain activities. When “normal” people read such information prior to engaging in the said activity, they probably wonder, how could that possibly happen? The answer: if you’re Amber. Those who know and love me dearly even joke after I do incur such injuries, “that would only happen to you!”

I don’t wear this as a badge of honor. I certainly wish I could trade this “luck” for highly unlikely positive outcomes like winning the lottery or at least the gold coins at Big Y supermarket! At the same time, I don’t want to cede responsibility or my self-efficacy in improving my balance and coordination and decreasing the incidence of undesired or hazardous movements and the resultant injury risk.

I consciously try to slow my body movements so that I only travel (or flail) at moderate velocities, so that any impact is somewhat attenuated (remembering the concept of momentum from physics class equaling mass multiplied by velocity; reducing velocity with decrease my momentum, impulse, and impact force). Instead of bombinating around like a wild ricocheting bullet, I attempt to pull back on the reins and let up on the throttle. This doesn’t directly improve my coordination, but it can augment the allotted reaction time before an impending crash or fall and dampen impact forces. I also practice balancing and stabilizing my body and limbs during my OT appointments and on my own at home. Admittedly, it’s frustrating work because I have yet to notice an appreciable improvement during dedicated practice (like single-leg stance time) or in “real life” applications (hence, the three bad falls this week). I’m not going to give up though. I harken back to a quote I had on my wall growing up from Jacob Riis:

When nothing seems to help, I go and look at a stonecutter hammering away at his rock perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that blow that did it, but all that had gone before.

Maybe all of the work and practice is quietly mounting beneath the surface in an undetectable manner, but suddenly, one day, I’ll notice that I am moving more fluidly, controlled, gracefully, and safely.

(For now, I’ve got ice on my back to ease its throbbing. I must not have hit that 101st blow yet…)

Mental Health Awareness Month

April was Autism Awareness Month and May, among other things, is Celiac Disease and Mental Health Awareness Month: two other causes near and dear to my heart. There’s been a boom of awareness around celiac disease, though partly convoluted by the gluten-free fad, yet I don’t feel I need to devote much attention to it at this point.

Mental health awareness, on the other hand, is more important to discuss, primarily because mental illness still seems to carry a stigma that it’s a weakness and should be hidden, something disgraceful that should be covered up—a coveted secret not to be confessed. Even when I was in graduate school last year, I remember telling a classmate that I wanted to adjust the arranged meeting time for a group project because of therapy and he replied, “oh, what injury do you have?” assuming that it was physical therapy to address a running injury (an innocent, and reasonable mistake). I said, “no, psychological talk therapy for depression and anxiety.” “Uh woah, yikes, weird. Uh yeah, let’s just pretend it’s physical therapy.” He, by no means, said this with any ill-intent; on the contrary, he was trying to protect my ego and present the “safer” or more respectable alternative to the group to spare me the assumed embarrassment.

I’m so accustomed to mental health treatment and therapy at this point that I’m not afraid to admit that I need it, use it, and find it helpful. Of course, I prefer not to broadcast it and it certainly would never have a place on a brag reel, but mental health services are simply another legitimate, and necessary facet of healthcare. Like physical illness, which can range from acute viruses or injuries to chronic illnesses like multiple sclerosis, and range in severity from mild infections requiring a short course of antibiotics to intensive or emergency care situations or terminal cancers, mental health illnesses run the gamut. Some conditions are acute and short-lived, while others are chronic; some are more of a mild nuisance while some are debilitating. Even depression can be experienced in an acute bout in response to a difficult situation and some anxieties or phobias only crop up when encountering a specific stimulus. Other people, myself included, have chronic depression and generalized anxiety (and PTSD) that are regularly present. Beyond anxiety and depression, there are probably hundreds of other recognized psychological conditions with just as many varied presentations as people afflicted with them. Also like some physical illnesses, a variety of mental health conditions go undetected or untreated. This can happen in cases where the umbrella of symptoms is hard to identify or they exist at a low enough level or persist for so long they become the individual’s “normal,” or because of lack of awareness that there is help, or one’s pride or lack of insurance/resources preventing one to seek help.

Mental health awareness, or increasing the frequency with which these conditions are discussed is therefore important for two key reasons: to increase the general public’s understanding of symptoms and available resources (to aid diagnosis and treatment so that individuals don’t suffer in silence or from an uniformed place) and to show the variety of shades and types of psychological illnesses and their common prevalence (to help reduce the stigma of it being “weird” or “shameful”). Anyone can experience mental health problems, although some people are more susceptible to certain illness than other people. Receiving a diagnosis and participating in treatment is a critical step in managing or mitigating symptoms and reducing risks associated with symptoms or behaviors of such diseases. I can speak to the fact that left unaddressed and unchecked, mental health problems can escalate to severe issues or dire situations. Like physical problems, the earlier a mental illness is addressed, the better. It would be dangerous to allow bacterial pneumonia to fester for weeks, lest it turn into a more critical condition; it is equally risky to sit with depression for weeks on end, allowing it to spiral into a more critical condition. Then, instead of responding with more conservative treatment or improving more quickly, it can stick around longer and necessitate more comprehensive measures, not to mention the unnecessary suffering.

I hope that people will continue to speak up about their battles with mental illnesses. Discussions and admissions are some of the best ways to increase awareness, educate others, reduce the stigma, and potentially help or save someone else’s life. I vow to do my part and try my best to be brave, honest, and open and engage in conversations, even if personal or uncomfortable. I’d rather be slightly embarrassed (though my whole point is that I shouldn’t be, it’s natural to be in our society’s current attitude towards such issues) and divulge certain parts of my life that are nowhere near pretty or perfect, and potentially help someone else who is suffering alone, confused or worried, or too shy to take the next step.

Here is a resource that may be helpful

:

http://www.mentalhealthamerica.net/may

 

Sick

Something has been off in my body for the past 24, 48, 72 hours. I don’t feel well, though it’s fairly non-specific and generalized: malaise, aches, heaviness and swelling in my joints, unrelenting headache, throbbing muscles scattered throughout my body, and vague nausea. This type of mild sickness is unfortunately fairly common for me, but that doesn’t make it any less disruptive or any easier to get through. It is often accompanied by a low-grade fever and dizziness, but so far, I’ve been spared of those symptoms in this current bout (although the magnitude of the body aches and headache seem to be proportionately worse to compensate!).

Besides the discomfort of coping with the symptoms of feeling unwell (the throbbing joint and muscle pain is the most bothersome problem), I have to combat the sensory symptoms, which are always exacerbated with this sort of illness. In fact, sometimes it is unclear whether I have an actual virus or biological underpinning to feeling sick, or if it’s a product of sensory processing disorder, PTSD, autism overload, or a combination thereof. I have reason for my suspicion as I always seem to get this concoction of symptoms after being in overstimulating environments, experiencing triggering or anxiety-provoking events, or socially stressful and overwhelming situations. It’s plausible that these psychological or emotional stressors do lower my immunity, leaving me susceptible for viral or bacterial invasion of some sort, but the typical timing of events makes that unlikely, as it occurs immediately afterward. The only difference is that these bouts last for several days with no respite, whereas unadulterated sensory overload or emotional fatigue can often be resolved with a long afternoon and full night of rehab and relaxation.

Whatever the cause, when I am sick, my auditory and tactile defensiveness are the most affected: countless tiny sounds—ones even I can normally tolerate—are excruciating. For example, I usually enjoy the sound of birds sweetly singing, but I can’t handle it today. I have noise-canceling hunting headphones, but I can still hear them through those, plus wearing them seems to turn the amplifier on my own physiologic sounds, turning the volume up on my heartbeat, the fluid rushing through my ears, and the normal whisper of my relaxed breath nearly bellows in this internal cocoon. I seem to be able to discern every square millimeter of skin and each individual hair’s slight position change when I move. I can’t allow any part of my body to touch another (like the side of one foot lying adjacent to the other) without triggering a cascade of overloading signals to my brain and bothering not just the skin of the offending parts, but my headache as well. Nothing I’ve tried (ibuprofen, ice, heat, lying down like a pancake, a dark room, a pillow over my head, the headphones, Benadryl, drinking water or tea, etc.) has helped to reset my threshold or reduce the sensory discomfort because it’s not really the illness symptoms that are bothering me so greatly; it’s the sensory issues screaming out with reckless abandon. It is hard to distract myself and divert my attention to something fun or engaging because if it alleviates one symptom, it aggregates another. For example, littering bags of frozen peas on all of the swollen joints around my body lessens the inflammation and provides temporary pain relief, but it irritates my sensitive skin so much that it feels like needles are being plunged into the surrounding tissues. Moreover, I seem to be unable to push through the fatigue into any reasonable level of productivity.

I am not pleased that this is a litany of complaints and negativity, but it is my reality, and it’s not productive nor honest to pretend that everything is fine when it’s not. I strive to be more positive but to maintain the integrity of this blog, I also share my tribulations and moments of mental weakness.

I’ve been here many times before; in fact, it happens nearly weekly, though normally for a truncated duration compared to this current affliction. Time is the only agent of improvement. The sole “solution” is patience and trying to stay calm. And so I wait, testing my inner strength to stay distracted and calm, exercising my resilience and physical tolerance, and stretching my hope that it’ll subside in the coming days.

Prosthetics & Orthotics

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blood Work

I can’t stand getting my blood drawn. This phobia does not extend to needles in general, as I don’t mind shots, but getting a lab slip for blood work is a doomsday sentence for me. This is more unfortunate for my circumstances than for the average person, because my health conditions necessitate frequent routine draws. I’ve trained myself out of my fear of flying, fear of men post-attack, and other phobias over my life, but this one seems impossible to conquer.

This fear confuses me. I’ve tried to analyze it, somewhat unsuccessfully, because there are still gaps in my understanding. For example, I’m not directly afraid of anything specific about the process of blood work. In contrast, when I was afraid of flying, I was terrified that the plane would blow up in a fury of flames at take off as it built up speed. I could also explicitly point to anxiety that turbulence was “abnormal” and the plane was going to lose its lift and plummet. I reasoned my way out if these through research, which was one step that helped me conquer the gripping phobia I had. I can’t identify a cognitive (even if flawed) reason for my blood draw issue. I’m not afraid of anything bad happening: I don’t think I’ll bleed out, I don’t think the phlebotomist will damage my body in some way. Sure, it hurts, but I’ve faced many significantly more painful situations, so I don’t think it’s that. I have had several bad experiences (passing out and hitting my head because they sent me on my way too quickly, waking up another time after fainting and not understanding where I was and then panicking, and incompetent nurses or techs that had to stick me several times when they themselves panicked due to an issue with the stick, but again, nothing Earth-shattering compared to other actual traumas I’ve faced. I think part of my anxiety is that I do feel sick and lightheaded with bloodwork, but I think some of that is physiological (as I’m chronically anemic and hypotensive so I do get weakened), but it’s undoubtedly also the anxiety feeding into the physiological anxiety reaction in a chicken-and-egg self-fulfilling prophecy. The more worked up I get, the worse I start to feel, and that in turn, makes me feel more uneasy and panicked. Ever since my attack, the number-one trigger that sends me into a PTSD bout is not feeling well or, more precisely, experiencing unaccustomed or unwarranted feelings in my body. I haven’t really divulged the details of my attack here yet because it hasn’t seemed necessary and it’s quite upsetting and emotionally shaking for me to actually think about it in a detailed way. Instead, when I say “my attack,” it couches the severity of the trauma into an emotionally safer package for me. One that has become such a habitual term that I can sort of displace myself or disengage from the feelings around that day. Just saying “attack”, doesn’t fully conjure up the utterly devastating and heinous acts I survived. I’ve recently been starting targeted trauma therapy though and my therapist thinks I would benefit from talking more explicitly about what happened, as a way to get some of terrifying memories that monopolize my brain. I do occasionally talk about it in detail with my mom or Ben, but even with them, it’s generally just mentioned in passing using the globalized “attack” terminology. Anyway, I’m leading myself quite a distance from my intended topic, and thus is more of a post for another day because I’d like to continue to evaluate my lab work phobia, but the point of my digression was to confess that my physical feelings of “unwellness” fuel my PTSD because I was so severely injured during the attack that I was genuinely worried I was going to die. Unfortunately (for once), this wasn’t even all inflated by my anxiety. Anyway, I think consequently, as I kind of was operating in survival mode for the first few days afterward, stunned pretty much into silence, not working or really doing anything, I just had me and my body and it didn’t feel right and I felt unsure if I was actually going to still make it through. Even though the acuteness of the trauma was over, I felt broken in so many ways and there was no clear path, however distant, to my guaranteed recovery. Over the first few days, I started healing physically but deteriorating emotionally. I’d check my own pulse periodically to see if my heart was still beating. While thankfully I’ve never come even within earshot of that sort of physical and mental trauma since, it takes a much smaller stimulus now to shove me back into that am-I-really-going-to-be-ok? place. Although I’m countless levels tougher than I ever was before, I’m a baby when it comes to triggering feelings.

Still, I don’t know that any of that necessarily plays any more than a correlation role in my blood draw anxiety. I don’t think it’s a cause. The one piece that I do think must have some effect on the phobia is that after I lay on the floor post-attack, I was bleeding profusely and I was fighting to maintain consciousness while my body seemed to want to pass out. I was alone, except for my dog, and my phone had been ripped from my hand and thrown behind the couch, so I was pretty removed from life lines. I was too shaken to scream. I knew if I succumbed to the faint, I could potentially bleed out eventually and part of me, in that moment, was okay with that, as I saw no possible way I’d be able to pick myself up literally and figuratively after this and pull together some semblance of dignity and strength to move on. I actually credit my dog for convincing the piece of me that was willing to fight to prevail. She came slinking out of the corner where she had been hovering by the door around the turn in our hallway, out of sight. Slowly, I heard her nails ticking on the floor toward me. She was crouched and sling-backed and the hair on the back of her neck was raised. Even though he was gone and had slammed the door in front of her, she wore every color of fear. As she got within arm’s length of my body, she stopped and looked at me as if seeking approval to enter the invisible outline around me. I stared back at her, barely recognizing her for a minute. I remember thinking in my head, “wait, who’s that?” Unable to lift my heavy head yet, I simply tapped my own finger on the floor. She could read me. Come. She gingerly came forward and sniffed me. Then, in Gross Comet fashion, tried to start licking blood on the floor. That was the moment that finally I cried. It’s also the moment I decided I needed to find a way to get up, and while I’ll detail that struggle another day, I do think she played an instrumental role in me fighting my body’s protective urge to pass out and helped me save myself. Now, I think I’m particularly conditioned to fear even whispers of lightheadedness and fainting. I can’t stand that feeling. I want to be as far from it as possible because it immediately puts me back into that very worst of all my catalogued memories (and I have a very detailed and vast collection stuffed in my brain). It becomes so real; it’s as if I’m transported back to that wooden floor, plastered in terror, deciding what to do, realizing with each passing moment that I was one breath further from the person I had always been and one more into one that was frighteningly foreign: a life I didn’t know I could or wanted to bear.

I do genuinely want to rid myself of this fear. On Friday, I had to get blood work for my preoperative appointment to fix a bone in my foot. To try to quell the anxiety before it had time or momentum to build, I tried employing all sorts of relaxation and distraction techniques prior to arriving: mindfulness meditation, listening to music, deep breathing, talking on the phone, playing games, progressive muscle relaxation, even bribing myself with the promise of a reward on my Amazon wish list for getting through it. Nothing really worked. My heart was thumping and I was overheating just waiting to be called in. I tried talking to the old lady sitting next to me, something wildly outside of my comfort zone, but my brain just kept honing back in on blood work. When the nurse calmed me in, I gave a sheepish smile and tried to walk bravely over to the table. My eyelids filled will tears. They filled to their capacity before the volume exceeded the force from the surface tension holding them in. They rolled onto the paper pillow and spread like cracked eggs. She asked me my name and my voice cracked, the lump lodged in my throat hindering the ease of my most familiar word. I just swallowed. I couldn’t speak. She then looked up from her clipboard and noticed how I’d quickly melted into an emotional heap, entering the room as a young woman and now a small frightened child. She even commented I was smaller than but reminded her of her nine-year-old daughter.

Eventually, I was able to find my voice and string together enough coherent language to answer her questions and assure her I was fine, just scared of lab work. And so we began. I wish I could say it went well, but this blog is all about honesty and my reality, in all its highs and lows, mistakes and weaknesses. It did not go well and I was not the brave solider I fully intended to be. I’m unparalleled in my ability to imitate and emulate behaviors and personas in most cases (in fact, it’s one of my qualities that helps me camouflage amongst neurotypicals and evade diagnosis for so long), yet I was entirely unsuccessful in terms of willing myself to act unphased by the draw. I cried and cried. To my credit (if I can even say that in this case), they did have to get three nurses and try the stick three times because my veins kept rolling, but I still should have played a more stoic role. After the first puncture, the nurse panicked and called another over for an assist. The superior said, “oh, it rolled…no problem.”

They continued to try to rectify the draw and since I don’t look, I envisioned the worm-flipping feeling in my forearm to be part of the sample collection process. It was incredibly uncomfortable and interspersed with sharp transient flashes of pain. Then, it stopped. I felt the needle recede from my skin and the gauze applied with heavy pressure. “All done,” she said. “That was terrible,” I cried, but breathed a sigh of relief that it was behind me.

As I sat there trying to get ease my heart rate back down, I started thinking about some of my challenges and wondering if the sensory issues play a role in my body’s repulsion to the whole blood drawing experience. The textured astringent wipe that is intended to sterilize the skin creates a toe-curling offensive friction on my sensitive inner arm skin as it’s vigorously rubbed back and forth. The rubber band tourniquet similarly irritates my skin, and though I don’t necessarily have a low pain tolerance per se, it feels like I can discriminate each individual cell layer that the needle penetrates and a searingly hot wave floods my whole body even when my antecubital space is touched gently or lovingly. SPD can transpose even soft touches to razor-blade like stabs. Somewhere in my mental survey of sensory insults, I’m brought back into awareness of the pre-op room and the nurses. “Ok, let’s try this again,” she says. “WHAT?” I exclaimed, “you said we were done!” “Oh no, honey. I just meant we were done trying to fix it.” Cue the waterworks. I freaked out. Like a petulant child, I started sobbing. “You said we were finished!” Needless to say, it was two more sticks until we were done, but I survived. I’m not proud of my behavior; far from it, I was filled with shame. As I hobbled on my crutches to the car, I vowed to myself to further research how to overcome this phobia.

I have. Extensively. But nothing has really resonated with me. Even the act of writing this post has made the multifactorial nature of this phobia more apparent to me. I did notice that Autism Speaks (which has its own pros and cons) has a comprehensive downloadable toolkit for parents to exercise with their autistic child prior to bloodwork. Unfortunately, even though I can be quite child-like in many regards, this is definitely geared toward a significantly younger demographic and therefore not useful for me. (If you are reading this and are parent of a young child, you may find it to be a helpful resource.) Becoming aware of the toolkit and assessing the amount of effort that must have gone into it did encourage me to imagine that there may be truth to my sensory processing issues exacerbating the experience for me. I know that the site they always collect from has some of the thinnest and most sensitive skin on my whole body so the cleansing with the alcoholic prep pad alone sends my system into overdrive before we’ve even begun, but I’ve been surprised how many phlebotomists seem reluctant or unwilling to try another site. They are the experts, so I am sure there is a valid justification for this (though I don’t know what), but the least offensive procedure I had was at the Celiac Disease Research Center at Columbia Presbyterian and they didn’t even ask-they just used my hand. It was more seamless and less excruciatingly stressful for me, by far. Who knows. I’m not a very adamant self-advocate when it comes to medical appointments, so perhaps I am less assertive and demonstrative of my self-informed position to adequately request the procedure modifications that would be most helpful for me. I’m working on my medical-appointment imposed unintentional and involuntary selective mutism. Clearly, I’m also working on trying to understand remedy my various challenges, though it’s not a quick nor easy process. At least I have my enjoyment for research and analysis on my side and plenty of opportunities to practice. For the record, I was too disappointed in my “performance” at this last blood draw to warrant getting the foxtail I want on Amazon, so hopefully the longer that carrot dangles in front of me, the more I’ll want to deserve it. (At the same time, part of my ADHD seems to be incredibly focused but short-lived interest in any one thing, so I’m not confident that won’t need updating as well). With my surgery pushed a few weeks back, I can guarantee there will be several updates to that wish list, more reasons I’ve uncovered for my anxiety, and hopefully a bevy of additional resources or facts to pacify (or at least inform) my problem.