Time

The weeks are starting to feel faster. A couple of months ago, on Sunday night, I’d start to get anxious about the impending week and how it would feel long, hard, and lonely. Then, I’d start to get anxious Sunday afternoon in anticipation of the Sunday evening routine and the impossible-to-ignore awareness that the weekend was almost over and the week would soon be upon us. Unlike some people, this dread isn’t about working or not liking my job; in fact, I’m blessed to love my job and I work some on weekends anyway, so weekends and weekdays are often not appreciably different in that way. Mostly, I think, I’d feel sad about being alone so long during each day, not getting a chance to see Ben, and fending off physical pain and depression in isolation.

I’m not so much feeling that way recently, which is a welcome development. I still cherish the weekend time and enjoy the companionship and the more relaxed vibe that characterizes our weekends together, but I’m doing better alone as well. I’d say the pleasant spring and summer weather is the main attributable factor: I’m so much happier when I’m not freezing and there is abundant sunshine to soak up outside. Although not wholly healed, my foot is also better, restoring much of my significantly compromised mobility from the end of the winter and the early spring. Both of these factors result in more outdoor time, which almost always mitigates my anxiety and lifts my mood. If I am completely immobile or stuck inside for weeks or months on end with injury or illness, one of my necessary “tools” to moderate my mental health is missing and so I feel unequipped and justifiably anxious that I won’t be able to handle it well. It’s somewhat like repairman being stripped of her ratchet set or drill but still getting called to a job. She knows she can improvise somewhat, but without some key tools, she would feel nervous and more doubtful of her command over the repair. Give her those tools back, and she’s ready to effectuate the repair with confidence.

In addition to improved weather, less foot pain, and more mobility, I’m excited about my life right now. This may be the first time I’ve truly felt this way in almost a year, when I decided to forego the prosthetics residency and found a job that suited me well. It’s a beautiful thing when, despite numerous and pervasive challenges, you can feel content, and even sparked by your everyday life. The addition of this new job, though undeniably adding responsibility and some amount of stress, is invigorating. I really like what I’m doing and who I’m working with so far and it’s a near-perfect complement to my other job in terms of its different demands, purpose, and focus. I can’t wait to learn more each day and discover ways that I can be helpful and fill obvious and also unanticipated voids and needs.

I’m also continuing to find satisfaction and better self-understanding and self-compassion through my journaling and blogging. Writing gives me time to think, grieve, appreciate, analyze, strategize, and inspire. It helps me dissect and digest some of the many thoughts and emotions swirling about my head on any given day, and it helps me connect with myself and the world. I write about being autistic, having sensory issues, trauma and PTSD, depression and anxiety and physical pain, but also I write about being human and my life and the world through my lenses. As much as I feel different and am different than most people in very obvious ways, it also helps me feel the same and understood, especially when others can relate to my experiences or challenges. I get brief tastes of being as human as I actually am, yet often fail to see from my mental space of “freakishness” and deep, almost metaphysical, loneliness.

Although my progress is never linear and these improvements don’t always feel relevant each day, it’s useful when I do recognize the trend has changed for the positive. Although that familiar swing of anxiety may catch me on Sunday night, I just need to remind myself that the week is really nothing to fear: not only am I fairly equipped to handle it and grow with it, I may even enjoy it.

 

A Memory of “Nothing”?

This morning I have a memory of New York City and my sister. After I’d lived there for a couple years, she got a teaching job in the Bronx and moved to East Harlem. My memory takes place in her small studio in a walkup building on 3rd Avenue. While I lack any ounce of interior design sense, space organization, and taste for what “looks right” or “goes” together (especially with clothes!), my sister is a master of creating eye-appealing spaces and combinations. In just a few weeks and a shoestring budget, she had her place inhabiting the “cozy” and “chic” camps simultaneously. This memory I’m sitting with today isn’t any sort of monumental milestone or particularly notable activity. What I remember is best summed up as simplicity. After a combination of taking the bus and walking to her apartment, I stood, my face out the window, her light, breezy white curtains rippling along the wide window frame in the gentle summer air. The street below was bustling with cars, pedestrians, and street carts, mostly wafting the aroma of tamales and the joyous sounds of neighbors’ Spanish greetings as they bumped into one another. I drank in the vibrant scene and the surprising freshness of city air, my sister joining me in the window, along with her heavyset, but ever-so-soft cat, Bean. In my memory, nothing else happens. The memory is the moment of simplicity itself: standing side-by-side with my older sister, silently acknowledging to myself the magic of New York, the gift of her presence in the city, and the ties that bonded us.

Although it seems that memory should be categorized as one of little importance because there’s no “action” or describable event, there’s an impactful feeling that rushes back when I mentally put myself back on that Sunday afternoon. It’s a place I go to in my mind when I need to remind myself to take pause and soak in the moment because sometimes the moment drifts away too quickly and is gone before you are ready. Five years from now, this moment—lying on the floor in my little living room, listening to the choir of June morning birds, reminiscing, writing, and thinking—may become one of just as much importance as the August Sunday afternoon in East Harlem with my sister.

Research shows that strength gains or physical growth from exercise come during the rest, and not the work itself. Emotional and spiritual growth seems much the same: it’s not always the big moments that directly change us. Growth also happens from those big moments (and small ones) in the breath, the pause, between. This memory of “nothing” is actually a memory everything that matters and the significance of the seemingly mundane is in fact, the direction that deserves the greatest focus and appreciation.

 

Simple Joys: Shoes!

After nursing this foot injury and exercising every last muscle of patience in my body for six months, I finally had my breakthrough step yesterday: no crutches, scooter, wheelchair, or boot; two sneakered feet hitting the pavement. I was shocked, and slightly disheartened, by how strange and difficult it felt to freely move both ankles and walk unencumbered by a big, heavy, rigid plastic boot. I felt wobbly and unsteady, and yet so light. I told Ben the feeling could be modeled by making a stick figure out of uncooked spaghetti and then just dipping the ankles in boiling water, turning them into wiggly noodles. But that model would fail to capture the deepness and endurance of my smile. Like a baby, my whole body beamed while I walked. Although I can probably count the number of times I have cried from happiness on one hand (it’s just not a reaction I get with that emotion), tears of joy welled up as pain-free steps took me further down my road. It took nearly ten minutes of a slow, steady, somewhat braced gait to gain confidence in my stability and ability to walk without any accoutrements, and I didn’t want to overdo it, but by the time I had completed my loop and was back in the driveway, my body felt more like a graceful gazelle (or at least a well-adjusted deer) than a newborn fawn. My mind, however, retained all of the qualities of the newly birthed animal, full of wonder, thrill, pride, and elation. I lifted my arm triumphantly upon my arrival back inside, like when I would win something as a child.

And that’s exactly how I felt: like I won. I beat my mental demons telling me I’d never walk again without at least a boot, I beat the pessimistic prognosis from negative doctors, and I beat the intense anxiety I had preventing me from lacing up the shoes and trying for the past week or so, too afraid the pain would still be there or I’d set myself way back again on the road to healing. My smile lingered until bedtime and it cropped up a few times in the night too, when pain-free steps carried me to the bathroom. I feel good this morning as well; it doesn’t feel like yesterday’s short excursion see me back!

Image may contain: shoes

I’m not out of the woods yet and I still have a long way to go towards full recovery, but these literal steps were a huge figurative one. At physical therapy the other day, we measured the atrophy in my calf. We compared it bilaterally (to my right leg) and also to my measurements back in February when I first went, before the orthopedist told me I needed to be fully non-weight-bearing. Compared to its original circumference, my calf has shrunk almost 3 centimeters, which is more than an inch. It’s also about an inch smaller than the healthy right leg. Most striking was the change in ankle size (and corresponding strength and stability). Compounded with my SPD-induced poor proprioception and balance and my connective tissue disorder-related joint wobbliness and instability, I have a lot of work to do to rehabilitate this ankle and restore safety and function. Yesterday, I finally got to start. Since I wasn’t cleared to do any single-leg work on that side, I haven’t been able to even attempt many strengthening exercises, let alone stabilizing ones. It’ll be a slow process, with bumps and setbacks along the way I’m sure, but this hurdle I’ve cleared fills me with so much more hope, confidence, and genuine happiness that I think it restored my bone-dry patience tank enough that I’ve got the mindset and mental fortitude to be positive and patient, the two critical ingredients to get me where I want to be as quickly and healthfully as possible.

 

Keeping Things in Perspective

Depressing. That’s the single word I’d use to describe yesterday’s medical appointment. When I saw him a few weeks ago, although I also received what could be considered unfavorable diagnoses, the appointment was couched in more hope, a possibility of answers and treatment. This time, the diagnoses and their ramifications hung naked, with no silver lining disguise. By definition, chronic illnesses or disorders persist; they do not resolve and many, by their very nature, do not have cures or effective treatment. It’s more about managing the symptoms, mitigating them if lucky, and attaining the highest quality of life possible. On good days, when wearing positive attitude rose-colored glasses, this feels like enough, a pill, though big and uncomfortable, is possible to swallow. On other “weaker” days when the pain is just too obnoxiously loud to be ignored, the sunny attitude is stripped away, leaving what actually remains, the somber outcome, the harsh reality. Most weeks are populated by both emotional responses, although in the weeks that are especially peppered with more excruciating and frequently debilitating symptoms, the balance tips in favor of viewing the bleak outlook with the pessimism that it rightly warrants.

The reality and prognosis painted in yesterday’s appointment was particularly disheartening because the first appointment presented the vague description of my health problems in sort of an intangible dotted outline of what “could” (but hopefully wouldn’t) be. Yesterday, the outline was traced in permanent black marker, with all the gaps and white spaces filled in with distressingly boldly somber colors. I left feeling unusual clarity and unusual hopelessness and sadness. Maybe it was the unrelenting rain and March-like temperatures despite the calendar’s insistence that it’s early June, but I felt literally and figuratively cold, wet, and despondent. I couldn’t even form words in my head, just a feeling of endless grayness, swirling around a vacant lot.

It’s easier to imagine a more optimistic picture when things are presented hypothetically. When diagnostic tests objectively present undeniable data that solidify the hypothetical into reality, the important keystone maintaining that hope is removed, and it all comes crumbling down. Although it’s always possible to view the same situation with a different (and more upbeat) attitude, in the former pre-information stage, it’s a genuine optimism, and in the latter, it is feigned, which takes endurance to uphold.

I’ve faced many disappointments and challenges over the years that I was able to overcome or at least tolerate as my new “normal,” like absorbing a small ball of black clay into the multi-colored amorphous blob representing my existence. At first, it adheres to the surface, marring the appearance with an unsightly blemish, but after a few days and continually rolling, folding, and spreading, the blemish is adopted and blended in to the whole. I have built a fortress to shield my flame of persistence and hope from the resounding winds of pessimism, blowing continuously from varying angles to try and extinguish its glow. I will not resign my efforts to hope for the best and put on a brave front. Bad news is just an impetus to learn more, seek alternatives, and be grateful for what I do have. I’m blessed. Nothing I face is terminal; I’m not dying, and that’s more than many people can say. My conditions may be degenerative and manifested in more substantial physiological damage than we initially thought, but all that really means is more joint and muscle pain and less musculoskeletal and GI function. At the beginning of the day or the end, this is still a way more privileged, lucky, and healthy life than many people inherit. How truly thankful I am to have been born into my life, with the parents, family, friends, circumstances, opportunities, safety, and blessings that I am so abundantly handed every day. Any setback I encounter is surely a dream for someone else in her battle in this world. I fight for myself to be strong and that becomes much easier when I view every breath as a gift and every circumstance as a blessing. So maybe I choose to edit that first word. Depressing. I’m not quite ready to genuinely call it neutral, but for now, I’ll settle for disappointing. But, I can work with that.

 

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.

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.)

Is the Sinkhole Escapable?

The beautiful weather this weekend helped wrap a strong rope around me and took me back a little further from the edge of my depression canyon. I can still see too easily for comfort over the edge into the sinkhole, but I’ve got at least one foot on some solid soil. Now I’ve got to harness all my physical and mental strength and pull the rest of my dangling body up onto the ledge.

At the risk of over-analyzing things and scaring this slightly elevated mood back into its shell, I want to consider what made this weekend a little better so that possibly I can identify strategies to keep things trending in this direction. Of course, weekends are always nice because I get to spend much more quality time with Ben and we had fun together this weekend. Unfortunately, the way that our schedules (don’t) line up during the week prevents this from transferring easily to a weekday luxury. The weather was great, and I thrive on sunshine. With the significant limitations of my injury, this is actually a positive and negative. It’s almost more emotionally painful to weather the tease when the warm weather and sunshine beckons me to be out walking, running, biking, or playing outside than suffer through the gloomy, rainy days we’ve had lately; at least in the latter, I don’t feel like I’m missing much. The weather will only get better as we enter spring and summer, so I guess this will be mostly good.

Ben and I had some difficult talks this weekend but they enabled us to make some big steps forward together so I think that feels good. It reminds me that I’m healing. Sometimes progress seems so stagnant and possibly even reversed, but then suddenly, an impressive step is taken and rewards the patience and toiling that was previously invisible.

What else? A few people reached out after my last post about depression and that helped me feel connected and understood. I’m quite socially isolated, so sometimes it can feel like my struggles fall in uncharted human territory: I’m the sole soldier in such battles. Even with others who are far away and whose lives have seemingly little parallel with mine, it feels validating and somewhat relieving to know the struggle is not only mine (not that I would ever wish an ounce of emotional or physical pain on anyone).

Not that much else this weekend was radically different. I just tried to ride on the coat tails of my own inertia and bounce between activities a bit to keep busy and distracted. I also made a list of things I’m grateful for as I strongly believe there’s nothing as powerful as gratitude (outside of love) that can elevate one’s mood. I’ve restarted my daily morning practice of jotting down three things for which I am grateful, even if they are ostensibly small; it’s remarkable how quickly a list of life’s beautiful gifts amasses and that bounty is plentiful enough to keep my head and heart reeling me away from depression’s cliff.