Would I Cure My Disability If I Could?
A 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 discreet. An almost-inaudible “Good luck” escapes his lips – the only thin thing about him – before he bolts into the backseat of an SUV and disappears down a narrow alleyway.
The real scene would be set more simply. 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 judgment 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 6 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 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 f***ing drag. A real raw deal. A s***ty hand dealt. The short end of the stick. Especially when the FOMO struggle is super real (for any non-millennials in the crowd, FOMO equals 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 she is more than enough. She knows things she once called flaws are actually gifts stacked higher than she can reach.
Stick-to-itiveness. 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. 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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