New Year, New-ish Me

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“Got any New Year’s plans,” she asked flatly, failing to hide genuine incuriosity of my booming or blasé social calendar behind an irritating “pop” each time gum smacked between her teeth. Assuming her Holiday Greeting had been set on autopilot since clocking in for her shift at the register, and she had probably asked that very same question, with only minor changes in intonation, to 50 more shoppers planning solo soirees or shindigs for a swarm, I played along.

“Oh, I have a Hot Date,” I gushed. The lights in her eyes came on at the mention of my potentially saucy evening, but were quickly dimmed by the boring truth.  “With my remote. I’ll be Netflix and chilling – by myself.”

Plain emotion swept her face, hopefully disappointment that such a young, beautiful woman would be ringing in 2017 alone; no prospects for a midnight kiss, except maybe the chocolate kind, making their way down the grocery store conveyer belt next to a cardboard to-go container filled with dinner for one.

After swiping my card and shoving the receipt, proof-positive of my less-than-exciting evening plans, into my purse, I gather my Bachelorette’s Night In kit and head back to my apartment. All the while, daydreaming of a New Year’s Eve straight out of When Harry Met Sally – the night that my perfectly unassuming guy finally realizes that I am his wonderfully weird girl. He must forgo his plans and hop in his car, jump on his bike or just take off running; he is determined to win this race against the clock and make it to my door before the ball drops.  He does, with a minute to spare. Out of breath, but full of devotion to me, he takes my face in his hands and kisses me, with all the passionate certainty that by my side is exactly where he wants to be.

In stubborn reality, I am (a more confident, less frumpy) Bridget Jones, adding another page to my single-lady diary. Donning the altogether appropriate ensemble for the evening (read: a purple tee-shirt sans pants, because my passionate distain for clothes is one thing that will surely never change with each new round of resolutions), I attend a very exclusive, solo dance party, spending all night in the VIP section. The one with a cherry red plush couch, wild (Christmas) lights that will stay lit until February and top (water) bottle service.  I sing loud and a little off key, I dance like  because no one is watching and I eat peanut butter, right out of the jar. I mean, c’mon, being single has a few perks, like passing out at 9:30 on New Year’s Eve because I can.  And because I never would have made it to midnight, anyway. Mama needs her beauty sleep. But, not before scribbling a few, friendly reminders for 2017:

  1. Stop Chasing Romance – but stop thinking you aren’t worth it.

Put down the smartphone and step away gently. Quit worrying about apps and algorithm percentages and profile views. Block out silly, useless thoughts of disappoint or, more accurately,  sharp-pang-in-the-pit-of-your-stomach jealousy, when a picture of a freshly-manicured left hand, weighed down by a rock whose sparkle game is on point, hits the interwebs – only to remind you how far you are from where you wish you were.

Pause when you find yourself poring over garbage articles disguised as self-helping you iron out your quirks or dissect your questionable behavior to determine if you’re fun, flirty, feminine or fierce enough to land the “perfect” guy. I’m begging you, please: throw away timelines and checklists and plans for your future. Ideas and dreams are one thing, but designing the blueprint of your life is not your job, lest you forget to live it. Remember, when you allow yourself to live outside the confines of routine and order, naturally, you begin to emanate bigger joy and greater happiness. Within that space you are able to invite someone new.

And the right someone will embrace you wholly. You can be difficult and you are challenging. Not to mention stubborn and strong-willed. But you are also wildly creative and deliciously funny. Sometimes you’re quiet and maybe a little dull. Then, when the mood strikes, you come alive with a quick and sharp tongue that gets you in all sorts of trouble.

You are so many things. But you will never be too little of this, or too much of that to find love. Dare yourself to tear down a few walls. Choose not to hide behind sarcasm and snark (at least not all the time). Allow yourself to be exactly who you are, no apologies, and to feel something real. You deserve it and you are worth it.

  1. Be Nicer to Yourself

You are freaking awesome and you should remind yourself of that any chance you get. But first, you must give in to the arduous work of editing your inner dialogue. You are wired to think and speak of yourself in a certain way, but unless trained, that little, sometimes pesky voice will drive you crazy with untruths.

Find a few personal mantras that resonate with you and remind you of your brilliance. Repeat them multiple times. Every day.  Rewiring your inner soundboard takes practice and persistence, but once you have mastered the art of deflecting negative thoughts, the much truer and more positive messages will come through loud and clear.

  1. Never, Under Any Circumstance, Apologize for Who You Are

Your vocabulary is, no doubt, colorful and extensive. Still, one, small word tends to sit squarely on the tip of your tongue more than any other. “Sorry” is a necessary and impactful expression of remorse and acknowledgement of genuine wrong-doing. Yes, when you have hurt or offended someone with your actions or words, it is always appropriate to offer up a sincere apology for your misstep of character.

But, playing the “sorry” card as a casual way to dismiss or diminish any aspect of who you are most genuinely and innately is never okay; and it is imperative that you know the difference between rightfully apologizing for a mistake versus wrongfully apologizing for a unique trait. You were made with the utmost intention. Know that, and celebrate it.

  1. Don’t Be Afraid of Change

While you are celebrating who you are right now, don’t forget to challenge yourself to push some limits and see how far you can go. Force yourself to be comfortable with uncertainty. Revel in spontaneity. Take risks and more chances. Decide not to play it safe.

This life you have been given is a fleeting gift and it is your calling not to waste it, to take everything you can from it.  Promise me that you won’t sit still.  Be brave, make moves and shake things up. Harness your passion and run with it. Embrace your gifts and dare to share them with others.

But all of this takes willingness to welcome change, the most essential and inevitable part of the human experience. You were not made to stay stagnant and unmoving. You were made to grow and evolve, no matter how scary it is.

This year, take a pledge to say more, to feel more and to do more.

Closing the NotePad app on my iPhone, I glance over at the digital clock glowing red on my nightstand, and reminding me how much of a party animal I am not. But it doesn’t faze me.  That whole ‘how you spend New Year’s Eve is how your New Year will be’ is a load of crap, probably made up by liquor companies to scare people into going out and drinking more than they should.

So what, I didn’t get a late-night knock on my door from Mr. Right holding a bottle of Champagne, ready to pour his heart out to me. Even without a fairytale, this life is turning into a better story than I could ever write.  I am content with who I am, and even more excited about who I am continuing to become.

That’s all the happy-ending (to a crazy year) I need.

 

 

 

 

 

 

A Quick Fix

 

laterns.pngA rare, life-altering gem like this should be delivered in a black steel safe by a man whose dark brows are slammed together over deep-set, uncompromising eyes, more menacing than his impressive size and sharp jawline. His leather-gloved hand recovers the pea-sized pill from inside the safety deposit box and drops it into my waiting palm before growling instructions to be discrete. An almost-inaudible “Good luck” escapes his lips – the only thin thing about him – before bolting into the backseat of an SUV and disappearing down a narrow alleyway.

The real scene is set much simpler. A poorly-lit pharmacy crawls with coughing, sneezing kids whose haggard parents are in need of an even quicker fix for their glaring exhaustion. A woman with heavy, glazed eyes and mousy brown hair tangled in the sticky fingers of a runny-nosed toddler straddling her hip catches sight of my wheelchair. Probably assuming I must be the more drawn down one, she tells me to go ahead. Still, the packed line to the pick-up window barely budges.

Ten mind-numbing minutes of corporate Muzak later, I was finally belly-up to the counter. “Ruth” was stamped on the laminated badge hanging from the neckline of her seasonal sweater imprinted with snowmen looking way too happy to be stuck in a perpetual Winter Wonderland. Rounding out the festive ensemble, Ruth’s matching candy cane earrings swayed slightly as she took the prescription slip from my steady hand, carefully studying the writing scratched into the paper by the only specialist signing off on this not-so-common request.

“Oh. Poor dear.” Her voice lost its cheer and I could tell by how quickly her round face fell and the rose color drained from her cheeks, she wasn’t expecting this order today – maybe not ever. We had only known each other for about as long as it takes a distracted parent to lose their curious child to the toy aisle of a drugstore, but I already knew that Ruth’s big, kind eyes saw nothing but good in every person and an equally-sized heart wished that they would, too. But, the opinion of a sweet, seasonally-coordinated stranger didn’t matter to me; I was only interested in one thing. She reappeared, looking sadder than when she fell into the back to retrieve my supply.

“You don’t have to do this,” she begged, disappointment dripping thick from her quiet mouth as she tried, unsuccessfully, to plead a case.  Slow and garbled, more of her concern fell into my lap but onto deaf ears. I was drowning in thoughts of inadequacy and in one, quick swallow I was determined to dismantle everything I knew to be true.

In fear of delaying the slow-moving line any longer, Ruth bit her lip and handed me the rectangular box. I turned, giving a silent nod of solidarity to the mom who looked as tired as I felt, hoping she would find relief, too. I was halfway through the door before Ruth could finish her final appeal, “Read the warning label,” she called.

But, in one quick jab, my thumbnail cut through the perforated edge of surprisingly flimsy, pocket-sized packaging. A dark green capsule rolled into my palm. I stared at it, recalling the genuine worry filling Ruth’s eyes, and for a moment, I wondered if she was right.

No. This is it. I get one shot to live a normal life. I’m taking it.

Under my tongue, the capsule’s contents bubbled and fizzed like Alka-Seltzer in water.  But this miracle med promised to cure more than a too-many-trips-through-the-buffet-line kind of stomach ache. In 12 short hours I would wake up revived and renewed. And in the morning, I would throw my legs over the bed, plant my feet firmly on the floor and walk out the door – on my own – for the first time in my life.

Some days, I still recognize the desperate girl in this make-believe scenario. I have seen her judgement and shame when she looks in the mirror and wishes the reflection staring back at her was taller or thinner or prettier or less disabled; I have also picked apart my flaws until there were none left.

I have felt her intense physical pain when the contractures in my joints or the spasms in my muscles are so great that I can’t catch a full breath of air. I have known her frustrations all too well when the whispers or stares of presuming passersby are anything but subtle.

I can understand her grieving a life she didn’t get, especially when I’m up against a monstrous obstacle, one that mocks me with relentless struggle, because it wouldn’t be so damn hard to pull on a pair of pants at six o’clock in the morning if I were completely able-bodied.

I am keenly aware of her enormous disappointment, each time a physical shortfall disrupts a desire to fully participate in life’s most precious moments, noting a time I couldn’t attend a friend’s wedding because the venue’s classically charming architecture came without a modern elevator.

I am hyper-sensitive to her fear of the future, as she watches from afar friends who find their truest love and build the perfect, little family she pictures in her dreams; I have also allowed myself to believe that a disability means I do not deserve the happiness I pray about at night.

Throughout my life I have spent an inordinate amount of time lost in daydreams about what that trip to the pharmacy would be like, if only rebuilding my broken body were as simple as curing the common cold. But it isn’t. It’s been a few years since a journey through my wishful sub-conscious and I’ve reflected (a bit) and matured (a little). There are a few things I’d like to say to the girl I once knew, the one looking for some medical magic.

I get it, sister. Disabilities can be a fucking drag. A real raw deal. A shitty hand dealt. The short end of the stick. Especially when the FOMO struggle is super real (for any non-millennials in the crowd, FOMO=Fear Of Missing Out). I also understand that no amount of feeling sorry or wishing on stars or hoping for new circumstances will create a quick fix. There is only ever slow acceptance.

I’m still working to train my brain to understand that piece. Certain days are easier – usually Fridays, because who isn’t in a good mood then – but generally, I am in a place where my mind and my eyes are finally clear. In the mirror looking back at me is a really beautiful woman. One who knows herself well and trusts that who she is is more than enough. She knows that things she once called flaws are actually gifts stacked higher than she can reach.

Sticktoitivenes. I have it in spades. Through all of the pain and each one of the frustrations, Giving Up is not on my To Do list. I will keep going, even when there is a hiccup in plans: no elevator, too many stairs, my chair doesn’t fit through a door. Learning to be fully present in mind, body and soul for each moment I am able to experience is a beautiful lesson from a hard truth that I won’t be able to go everywhere or do everything (that list is small, thanks to some crafty thinking).

Not to be forgotten is my physical strength. Every day, I rely on the muscles running though my arms, up into my shoulders and around my core. Watching the curves of my body move with every flex reminds me of my impressive physical power. I may not be in the gym on leg day, but plenty of my body kicks some serious ass.

But, still, the spirit within is more important. My experiences have given me a unique lens with which to view our messy world. I understand hardship and struggle and doing the best with what we’re given. I am thankful that my capacity for compassion runs deep.

I am almost, but not quite as thankful for my sense of humor. Pretty quick, a little dry and a lot sarcastic, my brand of wit finds the funny in just about anything, especially comments from a curious gent asking if my legs are still sexy. Oh, sure, if you like stick figures. I didn’t see him again.  He would’ve been so lucky.

I don’t know who or what is in my future, but the beauty is in the mystery. What I do know is that a disability does not disqualify me from anything I desire.  No matter how long a road may be, I need to trust my process and have faith in a plan already written.

Living this life from the seat of a wheelchair has always been part of my plan. And so it is messy, challenging and frustrating. It is not perfect, but it is mine. That is empowering. I have come to learn that to wish a quick fix on my life only devalues the woman I am, the very thing I fight against.

In one quick jab, my thumbnail cut through the perforated edge of surprisingly flimsy, pocket-sized packaging. A dark green capsule rolled into my palm. Recalling the genuine worry filling Ruth’s eyes, I turn the box over in my hands and read the warning label: Taking this product could result in a loss of your inner spirit and unique personality.

Maybe she was right. I don’t have to do this. For only a moment, I hold on to the possibility of a new life, playing with it between my thumb and forefinger. Then it rolls, past my fingertips and onto the pavement before landing in a puddle of melted snow headed straight for a storm drain.

The pea-sized pill for people chasing perfection washed away. Coming up slowly behind, ready to circle the drain, are years of crippling self-doubt.

Who I am today will always be enough.

 

 

 

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The Disabled Chick’s Catcall

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It’s mindlessly automatic, the way my hand shoots into the tiny black vinyl pouch perched on the armrest of my wheelchair (sidebar: don’t be fooled – this is not your Grandma’s fanny pack, kids. No, this is the far superior, more practical and way cooler saddlebag, modernized) and my fingers sift blindly through its contents – a halfway gone tube of red lipstick, torn up To-Do lists written by worn out pens missing their caps and a few lone breath mints awaiting their fated battle against post-meal malodor – to find the melodic tri tone chime emanating from my smartphone. The hair-trigger response rivals that of Pavlov’s hungry hounds, but instead of food arriving on a platter, I am classically conditioned to expect an equally tasteful or tasteless (depending on the sender’s mood) treat: a message delivered by a mystery man sleuthing through an online dating app.   

He’s done his part and now it’s my turn to decide if this online enigma is a run-of-the-mill Pick Up Artist or if he genuinely wants to be considered for role of Potential Suitor. It doesn’t take much detective work. Clue number one is usually that impressively witty or cringe worthy one-liner he chose for a username – a first look at his caliber of character or his not-so-good intentions. If his self-appointed call sign seems harmless enough, curiosity overrides commonsense and I snatch the bait.  

The second piece of evidence pointing to where this one-dimensional exchange will end is the choice words in his conversation opener. This pivotal moment can go one of three ways: innocuous and boring, leading me to believe that he doesn’t have much skin in this game and might put even less effort into dating me; cute and charming, the approach I fall for most often and which almost always guarantees I will respond to his efforts to catch my attention; or the all-too-popular crass and just plain oafish, telling me that this guy only wants one thing and probably doesn’t have regular conversations with his mother.  To be clear: “Your sexy” from LetsFuk2Nite won’t fly with this gal. Word to this wise, boys (because real men don’t approach grown women this way): if you’re going to be crude, at least do us the favor of proper spelling and grammar. Better yet, just clean up your act – I have no time, or energy, for such a slapdash disposition.

But, sometimes my defenses against smarmy bastards are downright lackadaisical. Like the time a nice-enough-looking-thirty-something guy with a charmingly crooked grin (there must have been something in his eyes that I missed) asked me right out of the gate, not even a quick ‘hello’ to soften the blow of his presumptions, “do you wear adult diapers? I mean, you use a wheelchair so I can only assume.” Did you also assume that line would get you anything other than no response from me? I could have shot back an equally classy “fuck off, dude,” but instead I chose to mutter “I can’t even,” the exasperated cry of a woman whose had just about enough of insensitive pricks full of fake bravado, before deleting his slimy message from my phone.

The shameless disrespect from players in this digital dating game is enough to make my thick skin crawl, but it’s the insults disguised as (backhanded) compliments that really get under it and stay there – until some self-reflection reveals that it’s their problem, not mine. I’d lose count if I tried to tally all the times I received messages that start with something like, “I wanted to drop a note and tell you how inspiring it is that you are living your life and looking for love…”

Gee, Thanks? Then there’s the guy who serves up this appetizer on a first date, “I’m happy I met you. Now whenever I have a tough day, I’m going to think of you and remember that you get out of bed every morning.” That’s great because I’ve always wanted to be someone’s poster child for soldiering on through adulthood.

I’d be remiss if I forgot the crown jewel of them all, the infamous Disabled Chick Catcall: “Hey, you’re so beautiful for a woman in a chair. The strength you have to put yourself out here is inspiring.” Hey, buddy, every person who wants it risks their heart for love. Having a disability does not make me a special case in this scenario. And while I have your attention, this wheelchair doesn’t call into question my attractiveness or my ability to love and be loved. It’s simply part of how I experience our world.

Yes, the experiences of others have the power to put elements of our own realities into much clearer perspective so that we can find renewed value and appreciation for our lives.  But the predictable “you inspire me” response to witnessing a woman live life is so tired. Instead of complimenting me it subtly devalues my humanity. The subliminal message, unintentional most of the time, is “even though you’re disabled you still manage to find purpose in your life – and that’s inspiring.” We all have purposeful lives, no matter where we’ve been. And to get where we’re going, sometimes we do need to pull inspiration from others. It’s what builds connections and networks of support and it’s what drives growth and change.

Ultimately, context matters most. I feel proud instead of patronized when I hear that my writing and other work has inspired people to think differently or to start exploring their own interests. However, when I’m called inspiring for getting out of bed in the morning or going on a date, I know the comment comes from fascination in my disability and not appreciation of my personal or professional merits or creative impact. That’s when I have a problem.

From where I sit (pun absolutely intended) people, especially men on dating sites, don’t always know the appropriate response to disability. The I Word has become a safe, albeit stale, placeholder in another’s attempt to recognize and legitimize diversity.  Lord knows our world needs more attempts to love and appreciate every person. But part of the issue with grabbing on to “Inspirational” to help stabilize a response to or grow comfort levels with differences is that for most people with disabilities it can easily feel disingenuous. We all want to be regarded for our whole person – there are thousands more descriptive words to choose.

What some pictures and a few words in an online dating profile might fail to show completely is that ‘disability’ describes only part of the woman I am. And if what that word means for my life inspires some guy to be a better man, that’s great and I’m sure his mom would thank me. But I want my life’s experiences to push people further outside the limits of their comfort zone. I want to encourage people to fearlessly go after what they want without second-guessing their worth. Above all, I want to empower people to proudly express their individuality without placing other people’s opinions above their own.

That’s all so much more inspiring than my ability to  drain smartphone data to find a date, isn’t it?

 

 

F*ck This, I’m Mobile

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“What does it feel like,” she asked sheepishly, her tone equal parts curious and concerned. I kept my eyes down and fixed on the row of scented candles I was scanning. Slowly running my fingers over each cylinder block of wax, I stopped when I got to Vanilla Sugar. I knew this was the one I wanted to sweeten my living room, but I took extra time savoring the trail of milky warmth that had filled my nose before putting the pillar of perfume into my basket.  Secretly, I hoped I was making good on my attempt to pretend I didn’t hear her inquiry and that my lack of acknowledgement would send a silent signal to keep moving and to focus more on the crimpled piece of paper she held between her thumb and forefinger – a shopping list she had no doubt lost and then found at the bottom of her tangerine tote.

Her presence was still just as strong as the bouquet of sweet and spicy fragrances circling the aisle we shared and I knew my pseudo-rudeness had failed, miserably. I have grown accustomed to being on the receiving end of sideways glances and impromptu interrogations, and on some level even welcome them – if it means an opportunity to encourage a person to widen their scope of understanding disability or differences. In this particular moment, the energy I needed to elicit the right kind of enlightenment was dangerously low. But my level of experience with these kinds of encounters is high enough that I knew exactly where her question was leading and I didn’t want to follow. I let her take me there anyway.

“It must be awful to be wheelchair bound,” she said matter-of-factly, simultaneously removing her glasses from her face, as if unobstructed eye contact would help convey just how sorry she was for my predicament. I kept my breathing steady and my eyes on the slightly reddened indents on either side of the bridge of her nose where red wing-tipped readers had held on – I had zero interest in seeing the pity she felt.

What her designer specs failed to make clear was that the neon green wheelchair under my butt is no more a part of me than the lenses attached to the gold chain looped around her neck. She needs an aid to help decode the dribble etched into a notepad just as I need a (much bigger, more tricked out) aid to help fetch items on my own Need List. But in just a 20-second (superficial) interaction in a supermarket aisle, she chose to surmise that my (supposed) lack of physical prowess also meant a life unfulfilled. And why? Because my life’s interpretation of mobility differs from her own?

Disability will forever be in my lexicon, but I don’t have a large arsenal of trigger words surrounding its definition. It’s complex and challenging. And in their misguided pursuit to understand, even the best people will trip up and say something ill-founded. I get it. I’ve jammed my stinkin’ foot in my big ‘ol mouth more times than I care to admit. But, even in empathy, I am allowed a red-hot button. Wheelchair bound will always ring the alarms in my mind.

It’s no Best Kept Secret that I am a lover of words and the imagery their pairings make pop off the page, but I absolutely hate those two together. Side-by-side they offer the sideways idea that myself, and other wheelchair-users (if you spot one of us outside our homes – gasp – and feel compelled to describe the scene, please use this word instead) are trapped in broken down bodies or shackled by invisible chains, condemning us to days spent fighting and trying to break free from a small, boxed in life.

Often, people awkwardly stare or stand impressively still, or better yet, lunge in an opposite direction as I roll by, and I know it’s because they don’t know any better. So I try to calm their uncertainties with a quick smile and even faster hello. And as their shoulders relax, their hair falls flat and their ears come back to the top of their heads (oh, wait – that’s nervous cats. Same difference), I spend a few, unnecessary seconds trying to interpret the body language of strangers and wondering if, like the lady collecting fall time décor – and a few eye rolls from me, that’s really what people think: I use a wheelchair and my life must be sad and awful.

I have a slightly different perception.  It was a few weeks before my junior year of high school and a technician had just delivered my first-ever power wheelchair. A mammoth of a machine, I was intimidated; I had only used much sleeker, self-propelled manual chairs. I also had never controlled anything with a joystick, short of the rare instances I could get my hands on my brother’s video game consoles. I was never any good; my hand-eye coordination wasn’t up to par.  And then there was the issue of my insecurities. Even at 17, I knew people made assumptions and that there were connotations around this kind of chair. I was already awkward and insecure, and I was afraid a power chair would make me look “more disabled” than I am. (See, even within our own communities we can harbor prejudices. Don’t worry – I got over that one real quick). No matter my feelings, the facts were that I needed this chair. It was becoming increasingly difficult for me to quickly navigate the packed hallways of my high school and I was growing tired of asking people to push me to class. I needed independence. I needed to gain control of my life – and some confidence. I didn’t know it then, but my life’s course changed direction the moment I sat in a sapphire blue power wheelchair and hit the ON switch for the first time.

It’s taken years of introspection to reach a state of appreciation for this body I’ve been given and who that makes me. I am flawed, and I am not what is considered conventionally able, but I have played the cards I’ve been dealt the best way I know how: with perseverance and humor, both in spades. And when that doesn’t work, the ‘ol “ah, fuck it. It is what it is. I am who I am” has served me well. These convictions come from the confidence I’ve gained in learning about the woman I am. The moments of my life that have taught me most about myself would not be possible without the power my body gets from a wheelchair.

I learned I have guts and just a little grit when I chose to pack up and move to Florida, where I went to beaches and bars and drank too much – giving brand new meaning to drinking and driving (I’m older and wiser now). I learned it’s okay to be a little adventurous and travel outside my comfort zone – even if it’s just an inch – when I went to Vegas to celebrate my birthday or Key West to praise the end of finals. I’ve learned I’m a really good time and can dance circles around any fool (you can cover a lot of dance floor on wheels). I’ve learned I’m really good at my job and in the office with my coworkers is one of my favorite places.  And most importantly, I’ve learned I really enjoy running (did you think I was going to say marathons?) Errands. I really enjoy running errands. Like going to the grocery store for almonds and grapes and getting side tracked by candles smelling like candy and snooping shoppers who suspect my life is awful.

“It’s really not terrible – I’m good,” I tell her with a half-smile. But in my mind, where my snarkier side hides, I thought, “Oh, I don’t know – I always figured keeping track of glasses would be harder.”

I leave her there and go to check out, but not before almost sideswiping a magazine rack (I’m no longer 17, but I’m still in the prime of awkward). I glance around, thankful no one eyed me with a “oh, you poor thing” look. That’s another installment of Things Never to Say to a Woman Using a Wheelchair – unless you want to see her head roll, too.

 

 

Your Choice

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I can smell the warm, honeyed scent of perfume lifting from her skin, making aromatic waves in the breeze as we walk side by side. We’re quiet for a long time, neither one of us sure what to say or how to be. The silence is comforting; we are connected in our deep desires to know and to understand the woman that each has become through the intervening of time, but we give ourselves unspoken permission to appreciate the experience of simply sharing space without filling it with anything more than our own private thoughts.

After miles of wordlessly wandering a seashell-tipped shoreline, I hear her take in a drag of thick, humid air, and as she speaks, my own breath is taken by the shock of how closely the cadence and the tone of her voice – soothing but strong, with a gentle rasp resting at the back of her throat – matches my own intonation and timbre. She’s funny, I learn, as she starts into a witty anecdote, throwing her whole body into the performance. Her face contorts and her voice shifts to mirror each new character in her sketch and I watch attentively, wishing I had parallel talent for storytelling. Then she laughs and I hear myself. I see myself, too, in the penetrating green of her eyes, wide and a little wild under a veil of long, dark lashes.

Pleased with herself and how well she entertained me, the teeth-flashing smile we share splayed across her animated face.  Faint lines traveled from the apples of her cheeks to her eyelids to her temples, creating a detailed map of her features. I study it closely, looking for clues that would tell me more about this sprightly woman who, although she is responsible for my life’s breath and blood, is a complete stranger to me.  Like air to breathe, I craved more stories. I wanted to know the things she saw, each thought she had and every moment she experienced during the years we lived without knowing each other.

Her stride slows and she pauses to retrieve something buried deep into the sand except for the very tip, glinting in the sunlight. Dusting off a coating of coarse sand, she brings the buried treasure to my hands. “My girl, you are like the beautiful creature hiding in this conch shell – I can’t see you, but I know you are there; living, breathing and doing all the things God made you to do.”

I counter her revelation with my own. “Your choice made my path good.”

A mountain of aquamarine crashes at our feet, rousing me from sleep and back to reality. I lay awake listening to the gentle hum of a fan. I swear I smell warm honey in the air.

The next day, my thoughts were consumed by her and the difficult choice she made. I have a hard enough time purging my closet of outdated fashion or throwing away mediocre art I made in school. I have this idea that letting pieces of the past go means I don’t have that memory anymore – or that it never existed in the first place. I don’t wish that feeling on anyone.

And knowing how attached I get to things that matter to me, even for only a small period of time, I can’t imagine what it felt like to let go and choose someone else to love  what mattered most to her.  But I can imagine what I’d say if we ever meet, outside of my mind:

“Thank you for your choice.

Your choice taught me that real, unconditional love is not only a powerful feeling but a selfless action.

Your choice gave me the liberty to make mistakes, to learn from them and to grow and change.

Your choice gave me opportunities to discover, to hone and to share my gifts and talents.

 Your choice inspires me to seek good and do more every day.

 Your choice gives me faith to trust every unknown and to believe that everything happens without mistake but with intention.

Your choice gives me strength to trust my abilities and my intuition.

Your choice helped me learn to appreciate my own, unique beauty (I really dig my eyes).

Your choice meant two of the best people could change their names to Mom and Dad.

Your choice gave me an incredible family who holds me up when I fall (sometimes literally) and stands with me through every challenge.

Your choice reminds me to treasure the bonds between family and to never take those connections for granted.

Your choice gave me the chance to make more of my life than I ever dreamed possible.

Your choice is the greatest gift I will ever receive.”

 

 

 

 

Mommydom Dreams

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Blue eyes with the faintest hint of grey, set in an almond-shaped squint, sat atop a tiny triangle nose, permanently scrunched in concentration. A narrow-lipped mouth was agape, revealing a gummy grin.  His features, though fine, were a perfect fit for a seamed and dimpled face. Wisps of threadlike hair clung to his brand new and nearly bald head like corn silk to a fresh cob.   Five little fingers were balled tightly into a tiny, determined fist – the others, outstretched and searching, ready to grab what captivated his attention. He looked and felt unmistakably real and in my three-year-old imagination, he absolutely was.

My first baby doll had a Benjamin Button thing happening – he looked like a cranky old man. So I named him Randy because that’s a cranky old man name. No, actually, it was the name of one of my mom’s students and as I understood it, all little boys were named Randy. So he was. Randy came with me everywhere and I took my job taking care of him very seriously. I fed him empty bottles full of imaginary milk when he cried, I gave him baths in the sink when he was dirty, and I changed all of his messy diapers – while getting an early lesson in male anatomy, owed to a venturesome toymaker who envisioned a world of anatomically-correct playthings. Thanks, Generic Toy Company Name, for a flying start to my fascination with boys’ “peanuts.”

I can’t remember a time I wasn’t obsessed with babies. My healthy infatuation with infants ran so deep that at a very young age I declared, with a fair amount of certainty, I would one day be a baby nurse and wear animal print scrubs and hang a stethoscope around my neck. This life plan stuck until I learned just how many insufferable years of math and science I would be subjected to in order to have the privilege of caring for the newest occupants of our planet and just like that, an ambitious career choice was thwarted by an amusingly passionate distain for anything scientific, algorithmic or algebraic – basically, anything ending in “ic” makes my skin crawl.

But, nothing about mini-humans is “ick.” Wee wiggly worms speaking baby-babble and sharing gas-induced smiles are masters of happiness. If I were a betting woman, I’d gladly challenge even the surliest, most unagreeable old man to a stare down against a much smaller, spirited and possibly wrinklier component then sit back and watch the hard shell of a curmudgeon crack and crumble, revealing the truth that no one – not even Grumpy Cat – can resist a broad beam next to a raspberry-blowing, nonsensically-blabbing gushy giggler.

Bestowed upon every baby to ever crawl or waddle the earth, the super power to melt hearts has never been lost on me. I’ve always wanted to be a momma; raising children to know unconditional love and care has been at the top of a very detailed Life List for years.   But as I’ve gotten older I scare myself into thinking it’s just a pipe dream of a reality meant for other women, says that silly timeline I made.  Married with kids at 28 came and went with nothing more than a Pro/Con List of whether or not I should adopt a cat. The answer turned out to be no, as I was afraid even to attempt keeping a fur baby alive.  Then there’s the issue of getting lazy with my daily affirmations (sidebar: if you don’t already show yourself some love on Post-It notes or through the occasional encouraging email, start now. The practice of being your own cheerleader has life-changing potential) and allowing my head to fill with anxious thoughts of general ineptitude. I wonder if challenges I face from a physical disability will make motherhood, already an exhausting job, near impossible. I mean, let’s be real, I make it look effortless (yeah, right) but I’m a lot of work. Add into the mix a helpless human, whose fine and gross motor skills aren’t much better than my own – especially on no sleep – and whose every need depends on me, and we’ve got ourselves a real circus.   And then I think other people might think that, too. The day I pee on a stick and it turns pink, will my family and friends be mostly happy, a little bit concerned or the other way around?

The questions don’t end there: When newborn skin is rosy red after little lungs are worn out from a good cry and not the slightly sallow pallor of worn out plastic after too much love from a fanciful toddler, when real bottles full of real milk are emptied into real hungry bellies, and when a diaper is full of stinky milk and not salty bits of dried Play-Doh (yes, this was absolutely a thing – there was no shame in my playtime game) and therefore, bath time isn’t just a make-believe activity but a real-time necessity, could I handle it? When life gets real, would I be the kind of mother I was so good at pretending to be?

Watching everyone around me get visits from the stork sometimes feels like a mockery of my dreams and their accompanying worries, only magnified by the looking glass that is social media; Facebook is beginning to look like one giant Babybook. Not to mention the annoyingly successful click-bate ads (I’m nothing if not a sucker) for the “Top 20 European Baby Names You Need to Know So Your Baby Grows Up To Be Attractive and Successful.” How dare the internet-ad mongers take advantage of my spiking baby fever, but they get me every damn time. I’d be a filthy liar if I said I haven’t saved a few of these idea-lists to my Favorites. You know, for future reference, in case I need to know the spelling of a trendy name like Londyn or Xander.

Putting a sock in my sarcasm, I am glad for social media – without it I wouldn’t be able to feed my appetite for espionage. Okay, now I’m done. Used properly, our fishbowl society is a fantastic tool for idea and experience sharing, integral pieces to building connections. And now that many of the most important people in my life are experiencing some of the most important moments in their lives, re: creating and raising (some of the most beautiful) humans, keeping those connections tight is essential to my relationships with my mom friends and their rugrat angel babies (depends on the hour, amiright?) It’s even better, though, when I can be part of the pictures and stories they post.

This was the summer of babies, no clearer sign of changing times.  My happiest moments were spent with little fingers wrapped in mine. Okay, the far-less romantic Norman Rockwell-esque picture was of my fingers used as chew toys for little, teething gums or little sticky fingers all over my face. There’s truly nothing better.  Shout out to my favorite nugget’s moms, making motherhood look beautiful. Watching them look chaos in the eye and give it a wink (while helping to block the view when I could), I learned a lot:

  1. I’m a helluva lot more capable than I give myself credit: The label of physical disability or wheelchair user assumes I am unable to do a myriad of everyday activities prohibiting me from participating fully in the human experience. While I do own the hard fact that stubborn nerves and muscles refusing to play nicely together means certain things are more difficult and that my life would be easier if my body worked the way text books from a medical school I never went to says it’s supposed to, I’ve spent the better part of 30 years perfecting my Winging It skills and finding clever, crafty ways to make all things work. I will approach Motherhood with the same chutzpah. I will find ways to conquer every mommydom milestone. Heck, I’m halfway there. This summer I held babies while they drank bottles and played with them and made them laugh those all-consuming-body-shaking belly laughs. They kept all their limbs and fingers and toes (inside the vehicle) and not once did I think I wasn’t cut out for this mom stuff.
  2. Everybody – even Super Mom – needs help sometimes: They say it’s cliché because it’s true. And when it comes to keeping babies alive and happy, it truly takes a village. There will be plenty of people from my crazy village standing at the ready when I need help cleaning my house or folding the laundry because I’ve used up most of my energy caring for my little human. Maybe I’ll just need an hour break to finally wash the spit up out of my hair and change clothes. Whatever I will need, I know plenty of people will step up. Hopefully first in line will be the poor (I mean wonderful) man who agrees to all my Baby Daddy terms. I’m taking applications now.
  3. There are lots of gizmos and gadgets to help make parenting more manageable: Just like the Little Mermaid had plenty, there is a galore of whoseits and whatsits to make sure all parents can hack it. Nowadays everything from cribs to baby bathtubs to strollers have been reimagined to make these necessities more easily accessible and manageable for parents who have varying disabilities. Check out this great list of products from The Mobility Resource. My favorite among them is the trend of Baby Wearing. Holding or carrying my baby with a cloth carrier will ensure their security and comfort while freeing much of my upper body to navigate my wheelchair while also protecting my child. This mom stuff will be cake (I warned you, I enjoy sarcasm).
  4. Babies are grabby little monsters: They especially like big machines with wheels and wires and joysticks that make said machines move. Never would have guessed I may have to baby-proof myself, but this just means I’ve clinched my position as raddest, baddest mom with the raddest, baddest toy in the neighborhood.

There will be sleepless nights and even tougher days when I will most likely cry right along with my babies. And without a doubt, I will face a set of challenges different from my able-bodied solidarity sisters and unique to momma’s who have disabilities or use mobility aids.

I know that I will have to be more mindful and increasingly innovative when organizing my life to make sure that a baby will fit nicely into it. Sure, there will be some unconventional things about the way I bring up my babies, but I vow that they will always be cared for and safe and happy.

And as much as I hope they get my eyes and my smile (30 years and zero cavities) and my sense of humor, I also hope they get my strength and fortitude. They will know that whatever they dream of as a child, they will make reality when they grow up.

Eye Can

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When it was new, rich and earthy coffee grounds were packed neatly to its rim, their strong, full aroma hidden away under a tightly sealed lid. Until every morning when a Coffee Connoisseur or a Java Junky — both in desperate need of caffeine jolt – hastily scooped the fragrant beads of brew into water hot enough to awaken their promise of perk.

But with its label cursorily peeled from its body, leaving behind tiny, white flecks of manufactured stamp, it was nothing more than an old, empty tin can.  Until a creative coffeephile, no doubt scraping the bottom of the barrel to capture every last morsel of the hot stuff, decided to turn a used-up coffee caddy into a brand new keeper of imagination and motivation.

Where there was once a picture of a sleepy-eyed woman, focusing her senses on the heavy, scorched liquid she held in her cup, photographs and papier mache added portraits of eyes wide open, gazes fixed. There were optimistic eyes, sensitive eyes, heavy-lidden eyes, searching-for-hope eyes, laughing-through-hurt eyes, wrinkled and wise eyes.  Every pair had seen different things but each was looking for more.

This metal container, once guarding contents of the artist’s most gripping vice, had been transformed into art – a giant window into hundreds of souls – and cleverly crowned the “Eye Can Can.”  Its new label also held promise to spur energy and drive, but the kind that only comes from within.

The capsule, storing endless supplies of tenacity and willpower, was created by a man unlike anyone I’d seen. His raven hair, slicked back into a pony tail and revealing the sharp edge of his jaw – dulled slightly by the dark shadow across his face – was the same color as the leather jacket he wore and the wheelchair he rode. Intimidation kept me from speaking to him until he broke through the art fair crowd – and my walls.

“Hi, Sweetheart,” he called out as his deep-set hazel eyes danced behind dark-rimmed glasses. I was instantly enamored, by his unexpected kindness and quiet confidence, but also by the way he moved through life. Fast but deep conversation uncovered that, years before this moment, a motorcycle accident rendered him paralyzed and unable to move much above his neck. He controlled the joystick of his chair, and each careful stroke of his paintbrushes, with his mouth. An innovative artist, indeed.

Attentively, I observed him and the steady intent with which he guided a blue-tipped brush across blank canvas. Turning in his teeth, the thin brush followed clear direction of his head’s small, subtle movements. Slowly emerging from his mind’s eye, delicate flower petals fell onto the fabric.  Unparalleled, his talent astounded me.

My attention stayed locked as he welcomed me into his creative mind, but from the corner of my eye, I watched as others watched him. And then us together. This picture of two people, one adult and one child, was nothing odd or uncommon. Add wheelchairs, and what was once cute and adorable became a little sad and almost pitiful. I quickly realized that through untrained eyes, the rest of the world saw a man trapped in his own body, whose abilities didn’t extend far beyond the occasional blink of an eye or twitch of the nose. But I saw much more.

What captivated me most was his conviction, unshaken. People silently assessed and evaluated his capabilities and potential, but he paid no mind to the results. He knew that, although permanent injuries from an unexpected accident changed some faculties of his physicality, his skill, his mastery, his artistic prowess remained intact. And he wasn’t going to let a doctor’s diagnosis or a stranger’s supposal stop him from being a leather-wearing-motorcycle-loving-rock-n-roll-listening-oil-painting artist. He wasn’t going to let his disability stop him from being himself. Our eyes locked like magnets and he told me that I shouldn’t either.

Right there. That single moment changed my life. Up until that point, I spent a lot of time around adults (read: therapists and doctors with “specialist” embossed on their nametag) who thought they knew more about me and my abilities than I did. Every time I laid on an examination table, feeling the stiff, white paper cringe and crinkle under the weight of my nervous body, every time I tried to stay “stiff like a log” on an X-Ray table, waiting for the lambent light to zero in on all the places my body needed fixing, every time I demonstrated the ways my legs or arms moved while a physical therapist scribbled illegible notes, wondering what they said about me and the kind of person I would turn out to be. Every time, I felt broken. Less than. Wrong. I felt like I was full of mistakes. Up until then, no one told me I was strong, capable and exactly who I was supposed to be.

“Keep all your dreams inside this can,” he requested.  “Whenever you feel like life is too difficult or impossible, look at it and remember that you can do anything. Anything is possible.”

I was probably too shy to speak, but these words of encouragement from a super rad, way cool, kinda scary adult – who just happened to sit in a chair like me – sent shockwaves through my system. Holding my own Eye Can Can felt like holding the key to my life. For the first time, I believed I could do anything. Go anywhere. Be anyone.  For the first time, I had courage to chase dreams and confidence to reach them.

After that day, an empty tin can decorated with a collage of corneas sat high atop my bedroom shelf collecting pens and stickers and folded up notes and old movie stubs and school pictures and probably a little dust. But every time I filled it up with little moments and memories from my life, I remembered the man who gave it to me. I replayed his words on a loop in my head and I took them with me.

I took them with me when I made the terrifying decision to move to Florida for college, despite a few pesky adults (read: advisors and school psychologists with fancy, embossed nametags) wondering “if it was really a good idea” and “if I had thought it through.” I took them with me when I applied for internships and jobs, all the while wondering if employers would give a girl in a wheelchair a real shot and hoping that they would. I took them with me when I signed my first lease and moved into my first home on my own, the entire time fighting fears and doubts. And I take them with me today, when a project at work feels too daunting and I don’t know where to begin. I take them with me when I’m exhausted and really not sure I can do this adult thing for one more day.

Adversity is an unfortunate side effect of life, and it does not discriminate or distinguish. But if we’re willing, we can accept challenges as gifts that demonstrate our strengths and develop our character. Too often, people with disabilities are told to stop at the edge of a challenge. They can take the easy road because the other way might be too difficult and they might struggle.

So what? What’s wrong with living and learning?

People with disabilities aren’t broken, less than, wrong or full of mistakes – they’re strong, capable and exactly who they’re supposed to be.

Now I’m a super rad, way cool, kinda scary adult who just happens to sit in a chair. And I know Eye Can do anything. Anything is possible.

EyeCan

I’m Not Answering That

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The rims of his flat top glasses were the same shape as the gold buttons on his blazer and I couldn’t stop staring at the spot where one was missing — probably forced from the fabric after working hard to tuck in his impressively large frame.

“Wheels, you’re over here,” he grumbled, waving a clipboard as he lined up the rest of the Hollywood Hopefuls.  There were kids of all sizes and skin colors, but I was the only one who earned that nickname.

Next to me, a girl in a purple polka-dot dress was talking a mile a minute. She slowed down long enough to ask if I was nervous.

“Maybe a little,” I said nonchalantly, but inside I was lit up with nerves. This was my first television audition. I had never performed anything except the Basement Theater productions my cousin and I starred in regularly.  I put on my best show–a massive hissy-fit–when my mom told me I should go to the audition, and that it would be a “good experience.” My act of defiance was only a mask covering my true anxiety.

I would voluntarily clean my room and unload the dishwasher before ever admitting I wanted to be in this commercial. The open call was looking to fill a role I played well: Kid in a Wheelchair. This character they wanted was a label I wore every day, and I knew it made me different. There was no kid like me in my class or in my Girl Scout troop. I understood that sitting in a chair meant that I stood out. But even then there were times I felt unseen. This chance to be in a commercial was an opportunity to be seen.

I tried to act confident as the spotlight sent blinding jabs of florescent light into my eyes.

Glasses Guy towered over me.  “Demonstrate what your favorite animal sounds like,” he ordered, his voice gravelly, likely from years of stale cigarettes and bad coffee. I don’t know if I was paralyzed under the strong, relentless grip of nerves or overcome by the assault of his breath hitting my nose, but I froze. Hard. The bright room went black and I forgot everything Old McDonald taught me. Do cats bark or does a dog meow? Does a duck quack or is that a cow?

One disappointing display of animal impressions, and that was it. I went home and back to my ordinary life, but not without an entertaining anecdote from the time 10-year-old me floundered at an audition for a television commercial. Everybody’s favorite ice-breaker games wouldn’t be the same without my brush with almost-but-not-quite-fame.

Now the closest I come to the lives of the rich and famous are in the made up, albeit colorful, stories between the pages of my gossip rags, each dripping with lurid scandal.  I know it’s grub, but I eat it up like the deliciously hot fodder it is. (Seriously, my living room could double as a waiting room for a dentist’s office. I freely admit a problem). Still, as I scan the pages full of sought-after stars, I don’t have to travel far outside my own life to imagine what it feels like to dodge stranger’s stares or field ridiculous questions from curious voyeurs.

My mantra has always been: I would rather people ask me questions than make assumptions about my disability and how it impacts my life. I don’t often draw a line through my willingness to be open so even I get surprised when a question crosses over to “I’m Not Answering That.”

Here are my Top 5 Favorites:

So, you dressed yourself today? I’ve never put much thought into appropriate salad bar etiquette (until this question came at me in line for some greens). I assume I’m not alone in that unless there is a Salad Bar for Dummies book I don’t know about. In that case, I’m going to “Amazon Prime” this compelling read and hand it to the next person spending more time pondering details of my daily routine then deciding on the dietary benefits of kale or spinach.

My truth is that I would rather stay in my underwear all day – clothes can be cumbersome – but since society, and HR, frowns heavily on public nudity, I must fight my urge to wear as little as possible and get dressed – with the aid of some fancy tools – before I leave my house.

To the peeking passerby who stopped mid-sesame seed sprinkle to question my appareling abilities: It was a wicked workout at times, but I did dress myself today. And I think I look pretty damn good. Enjoy that salad!

So, you go to work – like every single day?  Unless a marathon of Gilmore Girls is more appealing than a marathon of meetings (this has never happened, obviously) then yes. Yes I do.

I think most adults will admit that sometimes all this responsibility is a bummer. All we really want to do is stay home, do arts and crafts and eat macaroni and cheese. (No, that’s just me?)

Harder to admit, though, is the real truth.  No matter how severe the Case of the Monday’s or how much we loathe the incessant noise of our alarm (sometimes multiple) or the inevitable traffic jam, we like getting up every morning knowing we have places to be and things to do. The innate desire for your unique contributions to make an impact and to matter is the same for every person, disabled or not.

And usually with simple workplace accommodations – for me that’s some pretty sweet voice to text software to expedite the story interview process, and the ability to work from home a few days a week – many people with disabilities are able to hold their place in the job market.

To the older gentleman who surveyed me in my chair and asked, “But how can you do real work in that?”: I’d love to stay and chat about real vs. fake work, but I have a board meeting to attend.

So, how do you stay so fit? Health and fitness is important to me. Thankfully, the spaghetti noodles I call legs don’t stop me from being as active as possible and sweating out the stressors of each day.

I can lift weights with the best of them and I am a rock star at pushups (of the chair variety).   But for people whose heart rate responds only to the rush of friendly competition, there are plenty of adaptive team sports.

To the fellow fitness fanatic perusing a rack of workout clothes at Target: We both know the struggle is real. Even though I would rather eat an entire sleeve of Oreos for dinner and working out can feel like a chore, society has told us to keep it right and tight. And we listen.

So, are you a virgin, I mean, how is sex working?  It seems this question is no longer reserved for my Ob-Gyn.  I get it: Sex is fun. Sex is intriguing. And people (read: men who see an attractive woman and their minds start going, but they forget to close their mouths) will always be curious about it.

To the well-dressed and equally endowed man – judging by his ballsiness – who wanted to discuss details of my sex life while waiting to catch a bus downtown: Dude. It’s 7:45 in the morning – I don’t talk about sex until at least 8 am.

So, you really think you’ll find someone to marry? Lucky for me, we live in a time when most people accept that marriage doesn’t look one particular way for one particular kind of person.

I once thought I wasn’t the “marrying type,” whatever that means. I figured that I come with too much “stuff” and that no guy would be willing to take my “stuff” as his own. But it’s not true. Watching my friends and family in their relationships, I’ve learned that’s all marriage is: finding one person who is so crazy in love with you that they want to share all the “stuff” and work through it together, every day.

To Nosey Nancy who inserted herself into my future upon overhearing a retelling of my dating hits and misses: By the look of that ring on your finger, you got married. So there must be someone for everyone.

Choose Your Battles Wisely is quite applicable advice in any one of the aforementioned scenarios. In all of these small vignettes of the big picture of my life, I chose to respond with sarcasm or silence over a sour standoff. It is not cowardice, rather it is confidence in knowing I am a strong, capable woman and I do not have to prove myself to anyone. Sometimes I just laugh, shrug it off and say, “Well, it’s a show pony day!”

I am acutely aware that most people mean no harm. Their ignorance is an unfortunate slip of the tongue or a misguided attempt to connect. The blatant intrusiveness into my life comes not from malicious intent, but from misunderstanding.

We are deep in the Digital Age, and as directed by the hyper-saturated culture, much of the information we receive and collect about the world around us comes from the media, often misguided itself. It’s impossible to ignore that many of the stories told about disabilities and the people living with them are punctuated with pity or soaked in sadness. The character you root for is usually a little shy and unsure of themselves. They’re sidelined until someone shows enough mercy to bring them into the fold. People living with disabilities are often painted with broad strokes from the same brush – ill equipped for life and lacking capacity to achieve any real accomplishments. If the bar of expectation is exceeded, then it’s thanks to the aid of others and not from success of their own abilities.

My perspective of the world has always been uniquely sharp, with eyes wide open to injustice and inequality – intentional or not. What 10-year-old me observed at that commercial audition – that people with disabilities are missing from the scene – remains largely true today.

Our presence is lacking and it’s challenging for people who do not live with or around disabilities to conjure up any semblance of normalcy when thinking about what disability might look like. The truth is it looks different for every person – just like life.  People with disabilities can lead full, well-rounded lives, complete with love and, yes, sex. That fact is inadequately represented, forcing people to ask embarrassingly forward questions or create their own preconceived notions about what it means to be disabled.  It’s time to redefine disability. It’s time for disability to be seen.

I want to see real people with real disabilities in real-life roles. I want to see people with disabilities commanding conference rooms and consulting fellow doctors in a hospital trauma ward. I want to see women with disabilities negotiating a deal with clients and then coming home to negotiate bedtime with a three-year-old. I want to see people with disabilities finally find a hole in a busy schedule for dinner with their friends or date night with their love. I want to see people with disabilities living life.

Hey, Hollywood – I’m available. And ready for the red carpet. I’ve had plenty of practice saying, “I’m Not Answering That.”

Pray

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Her doe-like eyes, alive with curiosity, watched me with innocent wonder. In sync with each move I made, her brow furrowed, little creases on her forehead growing deeper as she worked to grasp what she could clearly see but not quite understand. Carefully, she hid stolen glances behind the splat of a chair she knelt on, sinking farther into the cushion each time my stare caught hers.

The waiter came, breaking our connection for only a second before her inquisitive gaze fell back on me. Try as it might, The Mighty Grilled Cheese and its sidekick, Impressively Large Chocolate Milkshake, were powerless against this tiny spy’s strong will to solve the mystery of The Woman Trapped in the Large Machine with the Even Bigger Wheels.

It was impossible not to chuckle as I watched this bright-eyed gumshoe’s own wheels turning: “How did she get in that thing?” she asked herself. “Does it hurt?” she wondered. Big questions like “What does she need it for?” “How come I don’t have one?” and “Why isn’t she walking like me?” filled her little head.

I had all the answers and I wanted to give them to her. I held down a desire to motor over to the table she shared with her family and tell her that this is called a wheelchair and I sit in it because my legs aren’t as strong as hers. I’d ask if she likes to dance (she’s wearing neon pink ballet slippers and a glittery tutu over her jeans – it’s a pretty safe bet) and tell her I do, too. I needed her to know it’s perfectly okay to ask questions and it’s absolutely fine to wonder why people look or act differently than she does. And it’s especially important to love all our friends, even if they aren’t quite the same as us.

I settled for a toothy grin and a quick wave before returning my attention to the conversations bubbling up around my table. Taking a sip of water, I could see her face through the foot of my glass and I hoped our silent spiel was enough. I hoped I made the right kind of impression and taught an observant child a lesson in being comfortable with people and things different than what she’s used to seeing.

When I looked up again, she was out of her seat. I had been too busy picking at whatever was on my plate to notice that she had bravely walked up to me. I turned toward the little voice saying, “You’re pretty, can we pray for you?”

We. I knew then that she hadn’t been the only one watching me. Adults are just a little better at being subtle. I also knew that while I enjoyed dinner conversations with my family, this family was having their own conversations about me.

I had a nano-second to react before mom was beside me, too.

“You are stunning,” she told me. “You look just like that girl in that movie, but, oh shoot, I can’t think of her name.”

A small, nervous laugh escaped her lips and I thought maybe, just maybe she realized she should take her daughter and sit down.

Nope. That would be too easy.

“Anyway, we just came from church and I told my daughter we would not be doing our Christian duty if we didn’t pray for you.”

You mean from your seat over there or later tonight at bedtime, I thought, giving her benefit of the doubt. Oh, nope, you’re going to do it right here, right now. In the middle of a restaurant. In front of all these people. But at least I look like some famous chick?

Before I could make a beeline to the bathroom, the little one grabbed my hands. Ah, man. I was trapped. Well played, lady. Well played.

“God, we pray that you heal this beautiful woman,” she said. “Please fix what You are able and bring strength to her legs so that she can walk.” Plus something I don’t remember. But I do remember her parting words to me:

“Later when you feel comfortable I want you to try walking again. God performs miracles every day.”

Still waiting for that miracle.

I’d like to say it was, but this was not the first time a similar scenario had played out. I need more than my two hands to count the times perfect strangers approached me to offer their condolences for my “condition.” And to beg and plead with their highest power, wondering why “such a beautiful girl” was condemned to an “unfair, hard life.”  When they don’t get the answers they seek they are soothed by prayers for my salvation and healing.

I don’t know where this calling comes from or why people think it’s their charge to change me. If I ventured a guess, it’s ignorance bred from fear. It’s scary to look at things we don’t understand but we know could easily happen to ourselves or people we love. It’s uncomfortable. Well, lady on the bus or man in the grocery store, you are making me uncomfortable by putting your hands on my shoulders (or head – it’s like a bee to honey every damn time) and making an unnecessary scene. You are not God. Or a magician. Just stop.

After shaking off another delightfully awkward moment, I say a prayer of my own, for enlightenment. I pray for a day when our differences aren’t so easily seen. I pray for a day when the beauty of our souls matters more than the value of our temporary aesthetics. And I pray to let go of my own petty thoughts.

This time, though, annoyance that would be gone before I hit the parking lot was replaced by lingering disappointment. You see, most of these impromptu prayer circles are led by full grown adults already set in their ways. They’ve had time to form their opinions about the world and they’ve decided on their own how to act in it.  But this sweet, impressionable girl – no older than three – hadn’t been given that chance. Instead her mother was molding her right in front of me. And it made me sad. She was learning that differences are wrong and that they need to be fixed.

I can’t help but wonder, is this where it starts? Is this the moment when the distance and disparity is created? Is this when the seed of intolerance is planted?

The praying woman had an opportunity. She could have set an example for her child and quietly taught her that no one is the same and that’s okay. But she chose to use my disability as an example that our differences separate us. And that we can only come together if they’re remedied.

We’ve made practice of judging and convicting each other for the ways we look, think and feel. Why do we insist on expending energies this way, casting our brothers and sisters as aliens to fear and enemies to fight? This is what’s wrong. This is what needs to be fixed.

I do have hope – as I recall the kindness in the big, brown eyes watching me from a chair – that the grating rancor of today’s world cannot compete against the unlimited power of a child’s desire to understand.

I don’t know when love and peace will be restored to our world. I don’t know when we can feel safe to be who we are. I don’t know when we will stop fighting against each other and begin uniting together. I do know that it will start with the lessons we teach our children.

I pledge to teach my nieces and nephews and my future children how to love completely, without condition. How to speak kindly, without spitting hatred. How to notice and care, without making a scene. And how to accept fully, without casting judgement.

And I will teach them to pray.

For people: Happiness, abundant.  Safety, guaranteed. Understanding, given and received.

For the world: Peace, always. Love, unquestioned. Acceptance, universal.

At First Blush

We spend hours in the bathroom and hundreds of dollars in our favorite shops making certain our hair is perfectly coiffed with not one out of place, our outfit compliments our best assets – just in case our date forgets to – and our makeup is effortlessly applied, masking and filtering our flaws.  All for the best first impression.

Who we are at first blush is hardly ever the best version of ourselves.

That’s hard to hear above a noisy pop culture. The one flooding our ears and filling our minds with false ideals of perfection. And illusive promises that the perfection we chase is the reflection of our significance.

We’ve listened to the clamor of clichés far too long. We’ve normalized criticizing and critiquing and swiping left or right for sport. We are blinded by desires to attain unreachable standards, for ourselves and others, and we cannot see beyond the veneers each of us tries so hard to keep polished.

When the day is done – when the makeup is washed off and the fancy clothes are stripped down – we can allow ourselves to take a breath and stop pretending that we have it all together all the time. We need to accept ourselves as the imperfect beauties we are, letting our truest colors seep through the cracks like light through a kaleidoscope.

I’m full of cracks and jagged edges. But I spent the better part of my young adult life fighting my body, cursing it for all the things it was and all the things it wasn’t. I wasted time shaming my imperfections and hiding my scars, forgetting to appreciate what they are: badges of strength and survival, meant to be celebrated and not condemned.

Our society’s voice does a spectacular job at reminding us that we’re a few crowns short of a beauty queen (unless you are one. Then get it, girl). What that annoyingly opinionated voice doesn’t tell us – maybe we just forget to listen – is that the things making us most flawed, tarnished, too complicated or broken are also the things that show our strength and fortitude, our sassy brassiness and our general badass-ery.

It’s taken a long time to fill the space that I’m in now. Where I realize we’re all just trying to make a mark in this world bold enough to keep our place in it. And I am not alone in all the times I have over-analyzed or under-estimated myself.

I know plenty more women have felt the way I have. That your form or style doesn’t fit a narrow mold so you question your worth and value. That you aren’t beautiful enough to talk to that charismatic guy you’ve been eyeing across the bar (you are, by the way, just as much as that leggy blonde next to you) so you settle for fighting over a bowl of bar nuts with the dude whose conversation skills are seriously lacking. That you won’t find The One so maybe you should just give up and finally adopt those cats (you will, by the way, but go get that cat. Make your own cat videos and send them to Ellen. She loves that shit).

I’m declaring it once and for all: ladies, we are all beautiful and worthy of every single good thing.  Whether you are short and curvy or tall and slim. Whether your skin is delicately pale or richly dark. Whether your hair falls in heaps of curls or hangs sleek and straight. Whether you rock heels or wheels. We are Queens. And fuck anyone or anything trying to tell us we aren’t.

Keep putting yourselves out there. Keep fighting against self-doubt and stereotypes for the sake of love. And everything else that makes you happy.

Be weird. Be different.

Be free and unabashedly proud of who you are.

BeYOUtiful