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.

Web

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

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

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

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

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

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

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

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

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

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

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

(Nature is amazing.)

Small Victory

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

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

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

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

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

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

He laughed. I laughed.

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

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