Phone

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

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

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

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

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

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

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

 

The Power of Attitude

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

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

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

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

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

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

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

 

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

Comet

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

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

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

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

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

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

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

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.

 

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.

Strength Training

I have been lifting weights again and strength training for exactly two months. Although this has nothing to do with autism, when I started my blog, I decided not to put constraints on myself regarding what I needed to think about or write about. This blog tends to be a space where I can simply mull over and express some of the many thoughts and experiences that confuse, frustrate, excite, scare, or otherwise impact me. As mentioned, strength training also has been a big bear I wanted to retackle, after going cold turkey post-attack for a couple years. Once a huge part of my identity and an integral source of joy in my life, it became one of many things I could no longer face. Except for running, I became a voyeur of the fitness world, as the mere thought of strength training made my stomach flip.

Not anymore. I’ve been training. I wouldn’t necessarily classify this training by tacking on any adjectives like “hard” or “serious,” because I’ve tried to take a low-key approach (and I have a broken foot!), but I would say my practice has been dedicated, courageous, and empowering. And fun. For as much as I’ve been trying to hold my ground above the depression abyss, any little source of happiness must be coveted like prized possession. Plus, it’s been effective. I’m actually back up to all of my old benchmarks and lifting at least as much—and in some cases even more—weight than in my prime strength training days in NYC as a full-time trainer. I never thought I’d get my body back up to that level of physical strength because it just hasn’t seemed as resilient anymore and I’ve had so many health problems, not to mention I was basically working out all day then through my job. 

It’s interesting because I have also mentioned that I avoid looking in the mirror. While I’ve gotten better and continue my daily practice of positive self-talk, this is just to the reflection of my face. My body is a different story: I don’t look at it. Until very recently, the weather had been cold enough that I was always bundled up anyway, so I never even really “accidentally” saw it. Sometimes I feel like this is actually healthier than it sounds for me personally, because I’ve hated my body unwaveringly for so long that it can be more beneficial to ignore its appearance altogether than risk critiquing it and hating it. I hope this is not the case for most people. I even shower in the dark. 

With all that said, I’ve looked at my arms lately. In fact, I not only looked casually at them, I decided to flex them. Boy there’s a lot of muscle trapped in a little arm! My scrawny atrophied arms of the past couple of years have reverted back to my healthy and muscular arms of my younger twenties. I’m not sure how it makes me feel, maybe surprised, maybe partly (ashamedly) nervous that my attacker’s words will ring true (that having muscles and a strong body made me attractive, and thus a target). Most of the time, my logical brain assures me this is not true, but I still have to fend off the occasional worries. The good news is that I’m not repulsed by my changing appearance, so that’s a start. I hope that confidence finds her way to quietly seep in, gathering a groundswell presence while I’m busy focusing on other things, until one day, she is big and loud enough for me to notice her secure hold in my mind. From there, she can slowly open the gates for the self-hatred, fear, and trauma to begin to recede and my mind, heart, and body will start finding more peace.

A Visit

My oldest sister came over today. Even though I’ve moved closer to home, I don’t see her often: she’s busy, I’m anti-social. In fact, when she got here, she commented that she couldn’t remember the last time we hung out alone. I was hoping that my nervousness was not as palpable as it felt. I guess that’s one of the weird things about me—perhaps it’s an autism thing—nervousness to see my own sister. She’s known me my whole life, yet my own social anxiety is so crippling that I fear seeing her. It’s also likely a product of times in my life I have been judged or teased, even bullied, and certainly made to feel even more different than I am by other people. Even though she’s family and I’m confident she wouldn’t treat me that way, I have trouble separating fears induced by past experiences in disastrous social situations over likely safe, and even pleasant new ones. This is another instance where I often let self-limiting anxieties hinder my happiness. Not only do I end up missing out on a source of love and joy, but it’s also unfair to wrongfully project the behavior of behavior of a handful of spiteful people onto my notions of everyone.

I think one of the special qualities about family members or true friends that you don’t have to “do” anything when you spend time with one another. Because I am basically immobile with my fracture and carry all sorts of limitations normally, ranging from severe food allergies to sensory challenges, there isn’t much I can do right now anyway. Ashleigh didn’t care. She didn’t pressure me to go out, provide any sort of entertainment, or make me feel like I was boring her to death. She just sat and talked with me, asked how she could help, tidied up my messes and mishaps, made me laugh, and distracted me from the loneliness and pains I’m going through. She regaled me with humorous bits from our favorite shows and talked to me like an equal, not a little sister.

Ashleigh has her own challenges and doesn’t claim to know how to help me with mine, but we seem to have a tacit understanding that we’ve got each other’s backs and admire the courage and strength that we both engage against the struggles we face, including the necessarily hard work of self-improvement and self-understanding. I look at her and see someone who is quite different than me, but also someone who, just like when I was young, I aspire to be more alike. Especially over the past couple of years, she embodies such grace, such resilience, and such clemency.

Even though she didn’t stay long, it was a bright spot in my day and a welcome break from work and even from my usual routine that I so tightly cling to. When I was talking with my husband after she left, he asked how the visit went. I caught myself saying, “surprisingly well.” Again, reminding me that I had the preconceived notion or fear that it likely wouldn’t. He asked me why I thought it went well or what I liked about it. All I replied was: I felt like I had a real friend.

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?

 

Takeoff

Yesterday my mom visited with my nephew who is just two weeks shy of his first birthday. My mom forms one of the three vertices of my triangular support system. In fact, we talk every day and those conversations (which are always the real stuff of life and not just about the weather) are often a highlight of my day! She’s also my dog’s favorite person in the world: one mention of the word “grandma” and she starts cocking her head to hear more and whimpering in excitement. String together “grandma coming” and you’ve got a full-on frenzy of jumping, sneezing (her excitement reaction), and whining. I’m somewhat the same way, albeit with a bit more of a muted and controlled reaction.

Though she always makes me feel better, I push my mom (and others) away when I’m at my very lowest. I tell her not to come, I cancel plans, and while I keep up the daily phone calls, I keep them brief and more impersonal than our normal deep talks. Part of this is the social challenges of autism intensified by the depression, which makes the mental picture of entertaining “company” completely exhausting and unappealing. As depression zaps my energy even more than it is already usually taxed with SPD, this becomes an insurmountable ask. Secondly, it’s self-preservation. Such a deep state of depression feels shameful and I want to hide from those I love so they don’t see how much I’m struggling. It’s too tiring to cover it up and pretend to be “fine” and it’s too embarrassing to be real and authentically express my emotional pain. With that said, ultimately, it’s self-sabotage. By avoiding my mom (or others), I’m denying myself the opportunity to get help with my problems, to talk and spend time with someone who not only loves me unconditionally, but is an amazing listener and resource. I wish I didn’t do it and even when I cancel plans, it sends me deeper into despair and I immediately regret the decision and start crying. I’m crazy!

My nephew is a real charmer and my sister and brother-in-law have done an amazing job raising him so far and he is their first. The kid exudes happiness and wonder like nothing I’ve ever seen. He approaches everything with a smile so big and unwavering that it looks like his happy cheeks will topple him over they are so bright and expressive. There’s something about young children that’s always been reassuring and soothing to me.

For instance, I used to be so fearful of airplanes that I chose not to travel when certain opportunities presented themselves. When I did fly, my phobia was so debilitating that I’d break into a panic attack as soon as we pushed back from the gate and started taxiing toward the runway. Even though a space shuttle and an airplane are quite different, after watching a video of the 1986 spaceship challenger’s launch, I could not separate the vision of the plane blowing up in flames at takeoff. Flying is also a sensory nightmare. The rumbling engines, the hissing cabin air, the sudden lowering or raising of the wheels that make an audible and perceptible clunk, the stuffiness, the inability to move freely, the ear pressure, the nauseating sensation of changing directions or altitude quickly, turbulence, and the inability to regulate your own temperature easily are just a few of the flying challenges that are particularly exacerbated for those with SPD. Those, I can manage a bit now like anyone else. The crippling fear the plane was going to be engulfed in flames? I got over it. I’m not afraid at all anymore. I just started watching young kids around me on the plane. Although most people hate being seated near a toddler or small child because of the inevitable crying, I hoped for those spots. Watching children’s reactions during takeoff calmed me. Babies rarely cared. Toddlers went along playing and were blind to the fact that the engines were roaring, our altitude was rapidly changing, and that stomach-turning feeling of lifting off was upon us. Even more, young kids excitedly pointed out the window, shrieked with glee, or clapped. The naivety of children is refreshing and can be reassuring for someone who is constantly fighting the chokehold of anxiety. Their ignorance is bliss, even for me.

A parallel can be drawn between the reassurance I felt on planes with children and the power of my nephew’s awe, enthusiasm, and undeniable joy to elevate my mood and reestablish some pleasure in the simple things around me. It was impossible to not smile while watching Eamonn (my nephew) totter around stumbling towards things with such palpable exuberance. A stick. The arm of a chair. An old plastic cup. His favorite, of course, the dog. How thrilling!

Even though social interactions are exhausting for me even when I’m not depressed, they come with an inherently wonderful tradeoff: they are able to refill the tank. When they left, I felt a familiar sadness creep back over me. This isn’t as bad as it sounds because it meant that I was afforded a pause from such pain while in their company and some of that goodness and love lingered with me even after they were gone, bringing my baseline up. My takeaway for myself on this one is two-fold: don’t hide from those that love you just because you’re too depressed to be social (it’s worth the effort and transparency) and approach the little things with joy and wonder because life looks even more beautiful and less hostile with those glasses.