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…)

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.

Summer Screen

It feels like a summer morning. It’s just past 4:00am and I finished my meditating so I’m lying on the rug in the living room. It is still dark out but all of the windows are open in here and the birds are serenading each other. Our house, admittedly, usually has an unpleasant vegetal smell from all of the vegetables we cook, but with the breeze coming through, it smells sweet like budding trees, dewy grass, and what I call “summer screen.”

This term has its origins back when I was a young kid. On summer nights, my mom would open my bedroom windows. We never had air conditioning and while sometimes I had an ineffective fan somewhere in the room—a tag sale relic or duct-taped old dinosaur from grandma’s house—I was usually way too hot to be comfortable. My bed abutted a window that looked out to the side of the house, where, incidentally, I observed squirrels and documented their “mysterious behavior” in my “science sleuth” journal, a small yellow spiral-bound notebook that sat in my windowsill among the dust and dead bees.

On hot nights, I’d drag my pillow, a pillow-shaped lion, from its position on the mattress and into the window sill gulley so I could put my face right up to the window, drinking in as much of the fresh summer air as I could. While an ineffective way to cool down (especially on stagnant nights), it distracted me enough from the sweltering humidity that I would stop rapidly flipping every which way on my mattress to try and find a cool spot (which only made me hotter), and just slowly breathe in the nature around me. I’d listen to the concert of cicadas, crickets, and toads, and crane my neck to try and spot the moon or the North Star through the trees. Whenever I found it, I felt like a ship navigator, finding a stable beacon to lead me home (of course, I was home). I’d narrate everything to Lion, the pillow, and explain to him the night’s story: what the insects were singing about, where our “ship” was returning from, and what the neighbors (“the enemy pirates”) were doing making noise, if they were around. I would press my nose so forcefully against the wire window screen as if trying to break through with my face to join the outside world. It felt cool and I’d put my hands on it too, and wiggle my fingers, as if making snow angels with them on the mesh. And that’s the smell of summer screen: the faint metallic wire of an old window screen with the warm summer air of a New England summer night.

I catch myself even now putting my nose right up to the screens in my new house in the early morning hours. It’s not quite summer and it’s not quite the same sweet mix of smells from my childhood, but it’s enough to remind me of those nights as an imaginative, happy kid full of wonder and possibility and take a pause in my current struggles to realize part of her magic is still in me.

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.

The Mighty

Exiting news! My first blog post—the one that bravely kicked off this blog (if I may step out of my normally modest shoes for a second and toot my own horn!)—was featured by The Mighty and is available on their website. The Mighty is a big, supportive online community for those with or affected by any variety of disease or disability. The community offers not only perspectives of afflicted individuals, but also their parents, siblings, friends, etc. One thing I really admire about The Mighty is that it not only provides great resources for those with or affected by a given condition, but it gives those same individuals a platform from which to share their experiences, triumphs, and concerns, which I think is powerfully influential in altering our stereotypes and rattling our contemptuousness. The Mighty gives voices to people who may not otherwise be heard and through such sharing, shortens the distance between things that seem blatantly different. Honestly, even before I had my autism and sensory processing diagnoses, I followed The Mighty and subscribed to their weekly digests of stories and articles because I marveled at the bravery of the storytellers and found that weekly messages of some people’s hidden or invisible struggles was a good reminder of the strength of humanity and the importance of constantly exercising compassion, even through my own hurt and battles. Some stories, even if about a disease I had never heard of and certainly didn’t face, made me feel understood, simply because many of the same challenges are faced by all of us, even if they come with different names or wear different costumes.

This now reads like an advertising spot for The Mighty, which certainly wasn’t at all my intention. I guess it’s just my honest one-minute appreciation speech for my new inclusion into the community as a contributing writer. In fact, they have asked me to add new content and posts overtime, so I’m really appreciative of the opportunity to share my perspective to hopefully help some readers understand and help others feel understood.

(it’s actually the featured story on the main page this morning!)

Prognosis

I’m crutching all around the hospital today. For some reason, they’ve designed it so that the orthopedist is in the basement in a small office that’s only reachable by snaking through several very long hallways. The radiology department—where he sends nearly every patient to get an X-ray after first seeing him—is upstairs at the opposite end of the building, in an entirely different wing, down another set of long, zig-zagging hallways. Thank goodness that I’ve been doing my strength training and have these triceps in gear!

After crutching for what feels like 30 minutes, I’m sitting back in his office waiting: waiting for him to come back in, waiting to hear why my foot is not getting better, waiting for an action plan. I start working myself up into an anxious state, flirting with a full-blown panic attack. I have my huge headphones on to drown out the rattling of the heating unit that seems to be situated in the wall behind his office rooms. I wear my noise-blocking headphones without exception when I go on most errands, unless I’m certain the place is very quiet or I’m accompanied by someone (in which case, it would be rude). I’ve also been wearing my winter beanie basically as part of my daily get-up since November (at least I have three!). It not only keeps me warm, but it tamps down my little flyaway curls that otherwise blow as I move—a guaranteed fast-track to throwing me into sensory overdrive.

The thick hat and the enormous headphones are quickly sending me into overheated territory. Thermoregulation and body temperature awareness are significant challenges for me with SPD. I seem to have to no idea if I’m trending towards becoming too hot or too cold until I’m beyond the point of easily reversing the situation and re-establishing comfort. This is one of those moments. It seems I am still dressing for January and it’s in the 60s outside. I begin to sweat. Anxiety is indubitably contributing to this heat flush, but my down coat isn’t helping. This doctor makes me nervous and so does this injury. I have a premonition it’s not going to be a favorable prognosis. My foot throbs as if to remind me, yes, I’m here and I really hurt. I don’t need the reminder but the throb won’t be silenced.

For some reason, once I’ve identified that I am, indeed, too hot, I do nothing to remedy it. I keep waiting.

I wish Ben was with me. He’s at work so I send him a text telling him I’m bored. I’m sure he knows to substitute in the word scared or lonely. I do multiplication problems in my head while I wait; over the years, I have found this to have a mild relaxant effect. 243×77

Finally, my doctor enters after reviewing my x-ray. Even though I struggle to interpret facial expressions appropriately, his is a clear tell.

It’s not good news.

I need surgery. He will insert an intermedullary screw, which is essentially a screw that gets drilled longitudinally into the metatarsal bone marrow. It will help my fracture heal.

The word surgery doesn’t jive well with runner or anxiety-riddled—both of which are equally understated adjectives to describe me.

So that’s where I am today: just wrapping my head around this next hurdle and working on convincing myself that I’ll be fine and this will ultimately be the best treatment. I will and it is.

I’m sure that I’ll have a lot of thinking and writing to help me digest this but I’m actually feeling like the depression might be lifting a little bit. Even though this is a scary proposition, it will ultimately help me heal. April 25th sounds like a good day to have surgery anyway, right?

 

The Slow Leak

Navigating through a “normal” day is completely exhausting, and often a losing battle, for those of us on the spectrum. The sensory bombardment of commonplace stimuli is like a full-on physical and mental assault. The energy and effort to be social and observant of social interactions and then “act the role” is like a constant game of mental chess, necessitating careful calculating, analyzing, and emulating catalogued behaviors. Tasks that should be simple can be monumental undertakings: getting gas, grocery shopping, lunch with a friend in a bustling cafe, a medical appointment. Mundane, unremarkable, or even calming situations for neurotypicals can, for autistic individuals, completely overwhelm the thalamus—the brain region that processes sensory signals. As a result, the thalamus sends dire fight-or-flight signals to the amygdala, which interprets the sensory overload as a threatening and fatiguing situation. The body is under a constant state of perceived stress and imminent danger, as if prepping to run from an oncoming lion attack, only there’s no lion: it’s just a quick trip into the post office to mail a package.

Lights, noise, temperature variations between indoors and out, smells of perfumes or cheap plastic products are all summative offenders so that by the time 2:00 or 3:00pm rolls around, I’m relegated to a limp sprawl on the couch with dark curtains drawn and soft blankets around me to decompress from the day. Sometimes I can’t even talk, I can’t tolerate noise, and my skin feels so irritated that my own seamless clothing feels like it’s digging its invisible nails into each sensitive inch of my body.

I equate this daily drain to riding a bike on a trail studded with broken glass and rusty nails. With the exception of the hazardous topography, the path is beautiful and goes exactly where I need and want to venture. It feels nice to be out and about, attempting to enjoy the environment and interact in a normal way, but suddenly, I get a flat tire—a sensory or social intense effort for my brain to process, assimilate, and handle. With a sufficient break and the employment of sensory toolkit strategies, I can recover enough to reset the cognitive madness back closer to baseline. This is analogous to pulling over, getting out my spare inner tube, and repairing the tire enough to keep going along the path. This time, instead of covering a decent distance before an issue, with just a few smooth pedal strokes, yet again, my tire springs a leak. Perhaps it’s even the other tire now—the back wheel—which is more difficult to change. Either way, the second puncture was inevitable given the surface I’m traveling on. Now, I’m out of spares. I do have a patch kit and a couple of CO2 cartridges, so I remove the wheel, pry the rusty nail out of the rubber (like removing myself from the exhausting sensory or social onslaught) and glue a patch on, inflate the tire (to try to relax and rejuvenate), and get on with my ride. However, now I am relying on the weakened equipment. Within just a few seconds, my tire has sprung yet another leak.

And so it continues. I can keep trying to cobble things together enough to ride, but eventually I will run out of patches and the possible cycling bouts between subsequent deflations become increasingly short. Eventually, my tire has so many holes that it remains flat, no matter how much I try to pump it up. The only solution is to get off the hazardous path: retreat to the comfort and sensory and social safety of home. I’m done for the day and I have to cancel any afternoon or evening plans. I just can’t get there. I won’t be able to repair enough to handle it. After all, I now need to buy a whole new tire at the bike shop and even get my rim repaired; riding on the flat tire too long damaged my bike. They have to work on my bike, order a new wheel all together, and it may be a few days until I’m able to get back on the bike. In fact, this is the reality of the magnitude of the impact of autism and sensory fatigue on my stamina and my ability to function. It can take days to recover from seemingly typical and casual encounters. I become a hermit as my body suddenly feels it must go into survival mode and conserve all physical and mental efforts to recuperate.

To extend the biking analogy, after my failure on the path, I try to research more well-maintained paths (places that are less overwhelming or social engagements that are less taxing) while I lie at home in the self-inflicted isolation and exclusion from society around me in order to heal. I find that, yes, there are some paths touted to have somewhat superior surfaces (perhaps stores that are more sensory-friendly, friends that are willing to just meet for a short mid-morning walk in the park, or ways to avoid doing errands all together by ordering online). Such paths are reported to “only” have shards of glass (but no rusty nails!), which is certainly an improvement, but obviously still damaging. What’s more, these routes cannot replace my desire to ride on the main beautiful path, which is the sole option to travel in the direction of my desires and interact with the world in the way that those around me whom I love and would like to join are gliding along with puncture-proof Teflon tires.

Face-Planting

I face-planted today. I was at physical therapy trying to walk with an iWalk, and I literally toppled prone onto the floor like a stiff board. (I probably should have been in the parallel bars while testing it, right?)

Let me back up. I recently broke my foot and I’m to be non-weight bearing for 8 weeks while it heals. I’m on day 3. As an avid runner and someone whose coping mechanisms involve movement, this is not a brief nor welcome prognosis. I’m already falling off the rails a bit. Because of physical issues, I get injured a lot, but this is different because the world becomes much more limiting on crutches. So, the doctor suggested an iWalk. As I mentioned, I clam up and become nonverbal in appointments, so I was unable to ask any questions about this device. While I can certainly see how it would be a useful ambulation aid for most healthy adults who are able to balance, it could not be a more mismatched tool for my safe mobility. The Amber-iWalk incompatibility stems from three six crucial issues (all of which could have been addressed had I advocated for my needs and asked questions at my appointment!):

  1. Balance: you have to have normal to good balance to use this thing. Essentially, it’s like a prosthetic lower leg that sits on a small foot with a platform for the injured foot to remain perpendicular to the ground. Since the base of support is smaller than one’s normal foot, it’s hard to control. As I mentioned, one of the primary issues with sensory processing disorder (SPD) is significant difficulty with balance.
  2. Size: it’s meant for adults 4’10”-6’5″. While I do fall within this range, albeit close to the minimum, it’s still too big for me. We were unable to tighten the straps sufficiently around my leg without maxing out their available adjustments. The therapist tried sticking a towel in there to bulk up my dimensions, but the thing still kept rotating around my leg. That doesn’t work when you’re trying to control an artificial leg. Take it from me: I spent two years earning my MS in prosthetics & orthotics, a degree that I don’t use for my vocation, so I might as well apply it to my own life situations! Prostheses need to have as intimate of a fit as possibly for control and comfort. This loose fit resulted in a device that was neither comfortable nor well-controllable!
  3. Body control, kinesthetic awareness, and coordination: sensory processing disorder issues manifest in poor coordination, and proprioception, body control. I’m somewhere between a pinball and a snowball rolling down a big hill. The laws of inertia do not necessarily seem to apply to my movements. I tend to go faster and faster with unintentional reckless abandon once I get moving and I can’t seem to control the movement of my limbs or coordinate limbs and trunk. The one exception is running. Running seems to iron out my kinks and turn me into a relatively graceful, well-oiled, unified machine. It’s always been my magic.
  4. Lack of interoception: (so, I guess there’s another reason; this is now #6). I mentioned in my first post that I have difficulty with detecting and processing internal body signals like hunger, temperature regulation, and when I have to use the bathroom. Females, or anyone wanting to sit when using the bathroom, can’t really have the iWalk on. It doesn’t allow you to comfortably flex your knee and hip appropriately to squat down. It’s also not that easy or quick to remove. Therein lies the problem. The operating window of time that I usually have between realizing I need to use the bathroom and when I will start peeing hovers around 90 seconds to 2-minutes. This works well for someone who is home and can ambulated normally, but strap on a device that’s stubborn to remove, a broken foot, and a big open physical therapy gym with a long walk to the bathroom and you’ve got yourself a free two-minute slapstick comedy show. While everyone watched the panicked and desperate struggle of two PTAs and a tech careen my awkward gait like a baby giraffe, all the patients at their respective tables or exercise stations stopped and watched. Once inside the stall I yelled, “I made it!” Ah…why do I exacerbate mortifying situations? I hate when I get anxious and blurt stuff out.

After I face-planted trying to walk with the iWalk, I lay silently on the ground thinking to myself: Wow, can this be any harder?! I have all these challenges and pains and now my foot kills, I can’t run, I can’t even walk, and more and more is taken away from me like I’m on some sort of slippery slope to doom. Thankfully, the pity party of one lasted less than two seconds. I rolled onto my side and got up using my arms and my good leg in a strong single-leg squat before the PT was even able to catch up with me.

“I was going to help you up!” She exclaimed.

“I know, thanks. But when I fall, I get back up.”

And I do, and I will.

The iWalk is getting returned. Some tools are just not suited for a particular job. You wouldn’t use a staple gun to saw a board! It turns out my insurance immediately agreed that a knee scooter was medically necessary, given my risk factors with using the other standard devices and my injury. I’m sure that’ll be another adventure, but I’m up for it.

Just like the strong callus that forms over the fracture line of a healed broken bone, strengthening the new bone beyond that of the original bone, I become stronger where I was weakest. I fall and I rise up braver, tougher, wiser, and more determined. Sometimes it takes just a second or two; other times it has taken a couple of years, but I commit to myself that whatever is thrown at me, I will face, I will fight, and I will overcome.

 

Am I in a Wax Museum?

The emergence of my nonverbal behavior always frightens me. When my ability to verbally communicate is swallowed, I feel powerless. Our world is not set up to facilitate nonverbal communication. This makes me feel like I’m at a dead end when I’m in a situation where I’ve lost my voice.

Sometimes, I’m not even aware that this has happened. I just stare stunned, nearly catatonic, blinking, perhaps nodding (if I’m lucky), otherwise, just like a puppet crafted without a mouth. The world moves around me and I feel like I’m standing still, the central axis pole of a merry-go-round with all the people and horses, music and lights bobbing up and down with carefree purpose around me. Sometimes I just watch in awe, oblivious to my nonparticipation. Other times, I feel like I’m my own statue in a wax museum, standing in a soundproof glass case around the action. The walls are sometimes a one-way mirror: I know people can see me, but they can’t hear me; or other times, I feel like I see everything but I’m concealed to the masses.

When I’m aware that I’m in a nonverbal spell, I feel like a scared child. I want to tuck myself into a ball and be carried away by a parent to safety. I want to be hugged and shielded. I become afraid that I will not stand up for what I want, or especially for what I need. Perhaps it’s my trauma background, but I sometimes get anxious that I’ll agree to things I don’t want to do. I’m not specifically referring to physical/trauma things, but less severe things that I still don’t want to do. It’s happened before: I’ve silently agreed to job offers, plans or commitments with others, giving people things that I didn’t want to part with, helping people in situations that seemed unsafe because they asked for help. A small shrug or nod “yes” seems to be a defense mechanism when I’m stunned or overwhelmed and can’t talk, even when I don’t want to agree. Thankfully, doctors usually have their patients’ best interests in mind, so that’s not typically an issue there, but I don’t get my medical questions answered, which usually sets my already-pervasive anxiety into a consuming tailspin! But like I said, I can’t take steps forward if I don’t even know they need to be taken, so this is a good starting place. I am now operating from a place of increased awareness of this issue so I can begin trying to navigate these aphasiac spells with a game plan that makes sense, which will hopefully instill some much-needed confidence to handle normal activities like medical appointments.