Scarkisses

There are moments when I’ll look at myself in the mirror and, for a fraction of a second, a tiny gasp will still escape my breath. I look at what remains on my left side, the visible scars that wrap around my left stump like seaweed on a jagged stone, and I reach over to where my leg once used to be. As a hip disarticulation amputee, not much is there to feel. What’s left now is a small bump with coarse, darkened skin, grooved and dented, and numbed to the touch. I graze it gently and feel a slight tingle as I trace my pelvic bone stretching through its thin exterior. Before I know it, that light touch turns into an affectionate and warm caress, and I’m loving that scar for everything it is and everything it holds.

Last May, I was invited to participate in a special project called Cicatriciebaci (Scarkisses), led by a passionate woman named Barbara Tosti. Cicatriciebaci is a visual art series with the sole mission to create awareness. Providing a platform to those who have experienced physical or emotional trauma, it shows how these unique individuals have overcome their pain by doing exactly what we often try to avoid doing: by embracing it. Through photographs and collage-making, these images are weaved into a rich tapestry of colors and tell the intimate stories of the people behind the scars. As Barbara says on her website https://www.cicatriciebaci.com, “Every scar deserves its crown!”

Photo by Barbara Tosti

I was asked to model for Barbara, sharing not only my physical scars but my personal story as well. Naturally, this meant exposing my amputations and posing for pictures without both my prosthetics on. We booked a small studio space at the View in Lugano one cool afternoon, and quickly settled into a familiar and steady pace of clicking, shuffling, and overhead lighting. This was my first photoshoot without the prosthetics, and oddly enough, it felt liberating. This was me, at my most natural and raw state. It’s almost like wearing pajamas in public and wishing you could do it more often.

I looked down at my prosthetics, carefully spread across the carpet like oversized silicone and foam Legos, and was filled with awe and reverence that I hadn’t felt before. And just as I have stroked my stump, I began to do the same to my artificial limbs. I pet them gently and lovingly, like one would a wailing child. I thanked these cantankerous, bulky objects for helping me to be me, for making sure my life could still function in a way that, for the most part, works. Sure, they often need a tune-up and have their occasional meltdowns – during the summer they feel hot and oppressive and have me rushing to the orthopedics lab (like ER for prosthetics) more often than I care to admit – but these prosthetics are a place I call home, and like my scars, they tell my story.

Photo by Barbara Tosti

The photoshoot lasted a full hour with a few selected props being thrown in the mix. Once it was “a wrap” Barbara and I chatted and I got a greater sense of what Cicatriciebaci represents to her. As someone with battle scars of her own, Barbara and I quickly learned that we had more in common than we thought. Through Cicatriciebaci, Barbara hopes to create a community where your pain, while entirely your own, can be used as a conduit of change for others. And like any vital organ that keeps us alive, our scars feed the soul, reminding us every day of how far we’ve ventured off the beaten path and lived to tell about it. I’d like to think my scar is the lovechild of a beautiful coupling, a unique marriage between courage and vulnerability. The two simply can’t exist without each other. Together, they possess an infinite amount of purpose in a world where most things are thought to be devoid of it.

A scar is our personal carbon dating, a temperature gauge for our worldly experiences, the lives we’ve led, and the things we’ve seen. Just as rings on a tree trunk, our scars tell us how much we’ve weathered and faired through personal suffering. Whether you fell off your bike when you were 10, broke your ribs in a car crash, or lost a loved one, or like me, lost limbs in a train accident, you survived. What stays with you is hopefully a lifetime of lessons, resilience, self-belief, and the never-ending hope that all things are surmountable. And the more we embrace this idea, the better it is to welcome the next battle scar that is sure to come along.

Thank you, Cicatriciebaci, for your hard work and efforts, and for bringing light to a world that so often gets placed in the shadows of society. If you would like to share your scar and story, please contact Barbara at cicatriciebaci@gmail.com.

For the photo gallery visit https://www.cicatriciebaci.com/galleria

Wheel of Misfortune

Last May, Rita and I had our first brush with danger.  

My friend Helen and I had booked  an organized tour in both Istanbul and Cappadocia, eager to take on the hot-air balloon flight the latter is known for. Steeped with cavernous hilltops and cone-shaped rock formations they call “fairy chimneys,” Cappadocia is a landscape to behold. Stacked with ancient cave dwellings and towering boulders, this Anatolian region entwines both human history and a lust for cultural authenticity. It’s no wonder they use the land as a platform for the countless balloon voyages, all gliding in unison like jeweled doves. 

af1e5d3e-b776-4ab0-99ac-5983ee8c1b59

We experienced 21st-century cave-living in a cozy cave hotel in the town of Goreme. It was the first on a long, winding hill that led to a parade of competing cave hotels that might have boasted better views, but like ours, promised reclusiveness over a a golden hued sunset. A humble city, Goreme caters well to the flurry of tourists, with their strap-on cameras and straw hats, with rows of market stands the size of a walk-in closet. Overly eager shopkeepers loiter outside determined to get you to choose from their array of local products, from Turkish doner kebabs to ceramic pottery and homeware, and of course, the ever elusive deal of a lifetime: the hot air balloon ride. Yes, for just a few hundred euros, you too can book your chance to float over the Cappadocian sunrise and walk away with a selfie even your neighbor’s dog would be envious of (selfie stick not included). balloonsHelen and I had booked our adventure several months ago through a private company, only to discover just days before our trip that the flight hadn’t been reserved at all and we had been tucked away onto a waiting list the length of a football field. There we were, left to dangle, like nerdy teens waiting in line for Star Wars tickets… checking again and again for the email confirmation that never came. 

Every morning at 5am we’d hear the clumsy footing and chit chat of our neighboring guests, all clamoring to the bus that would lead them to the kaleidoscope of colors that awaited them up above. True to my superstitious Latin nature, the first morning I woke up thinking we were being visited by noisy poltergeists who had turned in their heavy chains for intermittent cackling. Helen eventually rolled over to tell me that the ghosts were very much alive and heading to the Promised Land…well, sky. Hours later, the echoes would return, a powerful new lilt in their voices, their footsteps a light patter, now waltzing to a new serenade. They were nauseatingly happy. I yanked the plush pillows over my head while in the fetal position, in a desperate attempt to stifle the noise…and pangs of jealousy. And yet I still checked my phone soon after for the message or call promising we’d also be up at the crack of dawn, sleepy-eyed, stale breath and all. Still nothing.

On our second day in Cappadocia we arrived in Monks Valley, an area b113360b-13c1-4f79-b60c-f30349254b99noted for its fairy chimneys and unusual stretch of lunar landscape. Our tour group consisted of about 10 people from all corners of the globe: Australia, Colombia, Mexico, and Mauritius. They were a friendly bunch, intent on discovering this Turkish haven. 

As we left the bus behind, I noticed Rita was moving rather stubbornly. Our foreheads already slick from the morning sun, Helen and I were quickly working up a heavy sweat trudging up the rocky pathway that led to the main entrance. We’d pause abruptly every couple of meters, with my body jerking forward and my neck jutting out like a hungry little sea turtle. With confusion drawn across our faces, we stopped and looked down at Rita’s wheels and both our mouths gaped open. The left caster (front) wheel was barely attached to its fork (where the wheel is fitted) and was, in fact, coming apart. For the first time ever, I had a glimpse of what it feels like to almost pass out from the sheer shock of a moment. My head spun like the inside of a blender and my clammy fingers cupped my forehead like moist mop threads. My underarms sweated through my sky-blue dress, as beads of panic rolled over my cat-eye sunglasses. I felt like a contestant on Survivor, out in the middle of nowhere with no celebrity host or camera crew to lean on in case of emergency.  Here we were, chair-wrecked, my studio audience a blur of sweaty tourists. “Oh shit,” was all I could muster. “We might need to have a little talk later, Rita,” I thought grudgingly.  

With our tour group now far ahead of us, we quickly went into MacGyver mode, making a general inspection of what we had to work with but also remembering we were nowhere near our hotel, or town for that matter. Eventually, I got up and sat on a ledge so Helen could lift up Rita’s lower body and place her backseat on the ashen ground. She rotated the right wheel, relieved to see it wasn’t suffering a similar fate as its lopsided twin. Passersby began to linger and I could feel my cheeks turning as bright as Rita’s red frame. “Geez, Rita, you sure know how to make an entrance, don’t you?”

Then it hit me. Just two days ago, airport security had questioned me over a small Velcro-lined black pouch that was hidden underneath Rita’s seat. When asked to reveal the contents of the mysterious compartment, they exchanged quizzical glances but reluctantly let me go through. The items were sure to be there still, inside Rita’s carefully concealed “lady purse,” and I thanked the wheelchair gods. We might get through this mechanical snafu after all! In that moment that pouch was my Narnian closet, just brimming with powerful and all-knowing treasures. 

I reached down and there they thankfully were: a miniature collection of hand tools lined up flat like make-up brushes or a manicure set – Rita’s personal beauty kit. Almost simultaneously, a local man approached us, noticing something had gone wrong. He had a slight frame and wore a white shirt that seemed weathered from the harsh sun. We didn’t speak each other’s language, but I gathered he had seen enough. Rita still lay on her back like a woman in labor, her dusty footplates spread apart as if on stirrups. With a shy but determined look in his eyes, the man took the plastic-wrapped tool kit and crouched over the caster wheel, rotating it just as Helen had done. He was the master of this operating room with mini screwdrivers and wrenches being hurriedly passed from hand to palm and back.   

98fbbe42-b723-481c-846d-6008a62cd6a4And then just like that, Rita’s wheel was magically back in its place. My local hero (whose name and photo I sadly forgot to ask for) smiled with pride – the effusive praise making him cower just a little. He walked away refusing payment, and we were left to continue our journey, Rita now back to her steady self over the cobblestone ridges. Later, I looked out over the mountain tops, collecting my breath and sanity, knowing that it could have been much worse than it was. I searched for him in the crowds – this kind man that had unknowingly saved us a whole lot of grief – and for the 50th time, I thanked him again in my mind. 

We never made it on that hot-air balloon. I’d like to think it just wasn’t meant to be this time. But I walked away with so much more than the dizzying beauty of a perfect view. Once again, I was reminded of how much good there is in humanity and in the little things. People, in their essence, are happiest when they can give. Over the years, I’ve had to rely on the kindness of strangers, and that kindness – that willingness to help out our fellow man no matter the odd circumstance – has kept me afloat….and always surprised. Watching my friend and a stranger hunched over a dirty broken wheel might have been the more humbling view I needed that day. And while I didn’t reap the glory of a selfie in the skies, my memory tells me I was still given more than I bargained for. 

90fbb228-1033-4dfa-80cd-f6737a48b1c7

At Rita’s very special request, she’ll be getting a tune up before the next major trip. All in all, I think we both win. 

ZT Logo 02 (1)

My Significant Others

I looked up from my yellow-cased kindle at the flight schedules and my shoulders slumped comfortably. I relaxed, assured my flight was due to arrive right on time. The droning hum of the nearby vending machine lingered in the distance, as the smell of instant coffee teased my nostrils and reminded me that soon enough I’d be in a place where I could wake up to coffee and Spanish pastries. In a matter of seconds the quiet lounge room, or “Sala Amica” (“Friends’ Lounge”) as they call it in Malpensa Airport, was abuzz once again…with new passengers in wheelchairs and their family members and carry-on in tow. Men in gray uniforms and bright yellow vests accompanied them, as all kinds of friendly Italian banter swirled back and forth. The men in gray spotted me parked in my usual corner and chuckled, “Buongiorno Signora! Dove va questa volta?” (“Good morning, Miss! Where are you off to this time?”). In an instant, my heart was warmed and I knew I would be just fine.

Over the years, the men and women of Sala Amica have been instrumental in how I journey across the world. They have become the travel antidote to years of self-imposed inertia and reluctance. For a long time I questioned whether I’d be able to travel on my own, so I was relieved to hear of a service that catered to the special needs of disabled and elderly travelers and that any passenger would be able to fly the friendly skies without letting a physical limitation get in the way. This handy service has given me an autonomous lead on life, making the next adventure, or even the hope of one, always a more tangible reality. From my first solo trip to Berlin to my latest holiday jaunt in South Africa, the crew of Sala Amica have been by my side and have proven to be worthy companions.

Check in, Airport Departure & Arrival information board sign

The journey starts the moment I arrive at the check-in counter. Fortunately for me, disabled passengers get priority check-in, which means I avoid the nosy shuffle of long lines and exasperated morning travelers. Shortly after check-in, they appear; the conspicuous yellow attire discernable in a sea of color. I hand over my boarding pass, my excitement mounting at the thought of getting on a plane and heading someplace new. It’s that rush of unfolding newness and mystery that I get every time.

We wheel through the security checkpoint, the occasional “permesso” vibrating through the crowd. Once again I cut through the mass of people soon to be herded onto a plane, where the promised land of polyester blankets and duty-free brochures await them. There’s a look of bewilderment as they all pass through metal detectors and surreptitiously pick up their scattered belongings from plastic purple bins. The smell of tired leather and handbags yearning to be free permeates the air, as shoeless passengers wait for the much-anticipated nod that will get them back into their shoes. To me, there’s no truer sense of humility and parity in a group of people than the security process in an airport. At that moment, before we branch off to our selected destinations, whether big or small, we are all prey to the merciless and benevolent screenings of airport bureaucracy. It’s evident when even the most well-groomed businessman tries to shield his defiant toe bursting out of his ripped sock. Believe me, I’ve been there a few times myself!

I wheel past the metal detectors while my assistant makes sure my personal items are rolled through the x-ray scanner, like supermarket findings on a conveyer belt. A lanky female officer is signaled over, and she greets me with a warm grin spread across her face. We exchange pleasantries as I show her my passport and boarding pass before she gets to the job she was sent to do: check me and Rita for suspicious activity. She lets me know she has to pat me down before her white-gloved fingers graze across my limbs and shoulders. As expected, a puzzled arch in her eyebrow appears when she pokes my left side and discovers that, instead of muscle, she’s squishing foam, plastic, and silicone. An audible gasp escapes her and immediately I assure her that I’m not concealing any drugs or weapons of mass destruction, but have instead very bulky prosthetics. One time I might have jokingly added that I was kind of like a Latin Barbie doll, with a little bit of ‘plastic’ here and there. Somehow, the reaction was never what I was hoping for! That certainly didn’t stop the security staff at Schiphol Airport in Amsterdam once, when they insisted both prosthetics be removed to check for hidden cavities. Now I’m wondering whether there was a prelude to this order?! Who was this rogue amputee that decided it was a clever idea to use a prosthetic leg as an illegal locker room? If I knew her or him, I’d take off my arm and hat and salute their valiant efforts.

Once the routine security check is cleared and all jokes have been spared, my assistant takes over and pushes me along, our exchange becoming a little more personal by the minute. We talk about our backgrounds, the places we’d like to visit, our jobs, life in our respective cities, and just about anything we can muster on this short journey together through glass corridors. Like the film on a movie reel, I catch snippets, small personal glimpses, of their lives. I absorb the wide spectrum of their aspirations; from hoping for a career breakthrough in photography, to simply hoping for a decent meal at the end of a long day. They’re all coming from a personal place, a place they call their own, and for a few minutes that day I’m a witness to its unraveling. And soon after, when we’re ready to board, that brewing excitement is now intermingled with the cozy sense of familiarity and ease that you feel when you realize that your safekeeping is the sole responsibility of someone else. Bubbled with hope, I’m ready for the next step.

In the absence of a jet bridge, a small, sparsely equipped bus is used to transfer the passengers and their fluffy neck pillows from the gate to their designated aircraft. Assisted passengers in wheelchairs are instead carried through a passenger boarding lift, Bulmor_PBL_Passenger_boarding_lift or what I like to call the Thunder Cat (cue Thunder Cat theme song here). This heavy-duty mammoth of a vehicle looks like a modern-day western caravan, only with metal replacing the canvas exterior and a driver substituting the horse-drawn carriage. Once wheeled inside, I’m stationed in a corner, where the assistant pulls my brakes back and signals the go-ahead to the driver. Seating about five or six wheelchairs at a time, the Thunder Cat steadily bounces past the menagerie of airport traffic and life, making its way to its rightful place. During the ride, the passengers and assistants chat eagerly, the occasional ribbing between crew members creating a jovial space. Upon arrival, the aircraft crew releases and opens the right door, allowing the Thunder Cat to glide beside it. A narrow electric ramp extends to the door and faster than I can say “peanuts,” I’m ushered inside, where Rita (my wheelchair) and I then part ways.

My assistant walks me to my seat where we then also part ways and wish each other well. I make an earnest effort to remember his or her name at that moment, to somehow encapsulate what we’ve briefly shared. I don’t always remember who they are, but I remember their kindness and cheerful disposition. I remember the irrepressible laugh of some and the deep knowledge of others. I remember the good-natured teasing and the stories they share. Sometimes, that’s all you need. As I lean back and buckle up, I’m comforted by the few moments of silence before the swarm of passengers arrive.

People will sometimes ask me whether I have a significant other in my life, a special someone to call my own. It never occurred to me to say that I actually have plenty of significant others. From the disabled assistance crew in an airport, to the people that deliver groceries to my doorstep, to the medical teams that keep me going, these figures – although fleeting in presence – have made my life easier, and I cherish them just the same. They are kernels of hope, reminding me that help is always around the corner, and all you really have to do is reach out for it. And while I may never see many of them again, I know I’m all the more independent because of them. For a disabled person, that alone is worth it all.

ZT Logo 02 (1)

The Adventures of Rita Hayroll

The lion cub gazed longingly at the shiny spokes, bobbing his head to and fro, wondering whether this foreign contraption could be his next meal. It wasn’t long before he was gnawing on my left wheel, an audacious little twinkle in his eyes. I looked down, slightly nervous, slightly amused, and hoped to God a lion cub’s bite in South Africa wouldn’t be Rita’s demise.

For the past five years, Rita Hayroll III and I have seen it all. As my trusty companion, this wheelchair has been part of an unexpected, yet fruitful journey. Like the Hollywood starlet Miss Hayworth herself, Rita’s presence has been…iconic. I never imagined I’d be here writing about the adventures (and often misadventures) of a wheelchair, and yet here I am!

My first wheelchair (Rita I) came into my life shortly after my accident. I still remember it being wheeled in; a black monstrosity with thick arm rests, a bulky seat, and spokes the size of an ox cart. With careful precision, the nurse parked the chair adjacent to my bedside. “Il suo Ferrari la aspetta,” she teased (“Your Ferrari awaits”). I sat up, almost immediately tilting over like a wilted flower, my body still adjusting to its new proportions (or lack of). As social norm would indicate, the third time was indeed the charm, as I found my balance, leaned on the nurse’s shoulder very slowly and made my way onto the chair. Little did I know that this would cement a pivotal moment in my life and mark the beginning of a very long and permanent relationship. Initially, this new companionship was met with an unabashed apathy that quickly transgressed into downright resentment. See, to me, having a wheelchair meant accepting defeat, accepting that my life would forever be constricted to and defined by a disability. It was synonymous with old age and being a member of a community that I wanted nothing to do with at age 21. It would be surrendering to a lifestyle that would only bring public scrutiny and, often times, unspoken pity. I’m pretty sure I spent many days preferring the confines of a bed (with MTV Italia blaring in the background), rather than accepting my fate in a chair.

But deep down, I knew I needed it. Once the prosthetics were off, a wheelchair would be my saving grace; my only means of moving and finding much-needed independence. With time, I began to take notice of all the things I could do on my own, and how having a wheelchair made the transition easier. By the time I left the hospital for rehab in Zurich, a new, custom-fit wheelchair (Rita II) had been fashioned to better suit my needs. I’d whizz through the hallways, making my way through back-to-back therapy sessions, a small Hello Kitty tote bag trailing behind. In the evenings, my Swiss-German roommate and I would wheel ourselves to a small balcony on our floor and stare out into the cold snow-laden countryside. We’d chat and smoke, occasionally giggling at her feeble attempts at popping wheelies. During the day, other patients in wheelchairs would glide past our room, very frequently nodding, often giving me the thumbs up; a silent gesture implying we were now part of something greater…and we were in it together. We were all fighting a good fight and making the best of what we had. This motley crew and I eventually developed an irreversible bond that came through a shared sense of loss. Somehow, this all didn’t seem so bad. In fact, it seemed quite comforting.

Years later, with Rita III by my side, my perception of a wheelchair has undoubtedly changed. rita close up Rita is a loyal respite as she welcomes me at the door every day, a plump cushion and Frida tote bag her only accessories. If Rita could talk, she’d probably say, “Ummm…so where are we going now?” I’d imagine she’d be just as eager and forthright as I usually am for the next adventure.

Like any vehicle, Rita also needs to be fine-tuned and cleaned every so often. Some Sunday afternoons I sit on my floor with a bucket of soapy water, polishing Rita’s metallic red exterior. Again, if Rita could talk I’d imagine she’d say, “Hey, let’s not forget the errant hairs and dust balls caught in the front wheels, mmkay?” She’d certainly remind me of a trip to Madrid last fall, when we stayed in an apartment on the dodgy side of town. Some of the streets in the neighborhood were lined with trash and what I could only hope was canine poop. While my brave friend and I traversed the uncombed path that led to our bus stop, I could feel my knee throbbing as images of my cold wooden floor and that bucket of water began to haunt me. I’m sure we were all grateful for the thorough scrub down after. Oh, the things those little wheels have seen!

Together, Rita and I have ventured through a parade of unsteady terrain from the rugged Highlands in Scotland, to fish guts in Morocco, to dicey cobblestone pathways in Rome. With half a brake wheel missing in the back, she’s clearly seen better days, and yet her sturdiness is unshakeable. With Rita, I’ve been to places far and wide, always a little more independent, a little more curious about what awaits just around the corner. Having a wheelchair means you never have to wait in line and you always get bumped to the front row, wherever you go. I still remember being slightly mortified at being able to skip through at least 50 people who were in line to enter La Sagrada Familia in Barcelona. We even avoided the long trek up to the Acropolis in Athens, when we were escorted up in a very rickety, but efficient elevator that screeched and roared intermittently, as we made our ascent.  Rita definitely has perks!

On a recent trip back from India, Rita went missing and somehow made her way to Amsterdam instead of Milan. My heart plummeted, and all kinds of disastrous mental images danced in my mind. For the first time ever, I found myself worried about Rita and whether I’d see her again. Would they scratch her shiny surface? Would they crack her pedals or brakes? Would she end up in the seedy part of Amsterdam where the ladies there might have a soft spot for pretty red things? Gasp. Luckily, Rita made it home a few days later, and without a scratch or dent on her. I welcomed her with an open arm and sat down faster than a customer at a Taco Bell bathroom. Now, whenever the flight assistance crew wheel her away into the cargo hold, I reiterate my travel instructions ad nauseam, hoping every time that she’ll greet me on the other side. “See you soon, Rita,” I’ll bellow out, as a confused staff member rolls her away into the shady abyss.

A few years ago, while strolling through the streets of Como, a little boy on his bike stopped me dead in my tracks and eagerly turned toward his mother. His slender finger pointed at my wheels, before he shouted, “Guarda, mamma, anche lei ha la sua bicicletta!” (“Look, Mom, she also has a bicycle!”). His mother’s cheeks turned a cotton candy pink, her laugh apologetically soft. I flashed her a comforting smile and replied, “Si! Anche la mia e molto bella, vero?” (“Yes, and mine is also very beautiful, right?”)   And I truly meant it.

To me, Rita is beautiful. My little roadster has taught me that beauty is present in all portugalthings our heart deems important. Our experiences of heartache and joy all cascade into a mountain of memories that not only nurture our souls, but drive them. But dignity isn’t shaped by what we experience; it is a result of how we choose to carry on that experience. I chose to embrace Rita for the many facets of life I could still enjoy through her. Because of my wheelchair, I’ve learned to chip away at the ingrained notion that sitting down meant missing out. Obviously, it doesn’t. My adventures are still my own, and while the view might be a little lower, it’s undeniably clear. I’ve come to accept that Rita and I are in it for the long haul, and that our journey, while challenging at times, will never be less than memorable.

I wonder whatever happened to that little boy in Como, but I hope that wherever he goes in life, he’ll be driving something cool too.

In the meantime, my chariot awaits.

ZT Logo 02 (1)

 

16

Last October, I celebrated the 16th anniversary of my accident.

I think about these years since the accident and the long journey behind me: how that naive but curious 21-year-old managed to get by when so often the odds seemed against her. We certainly wouldn’t be where we are now without a lifetime of moments – little nuggets placed along the way for the sole purpose of making sure we know better next time. So what nuggets have I collected along the way? Here’s what I’ve learned so far….

These are in no chronological (or logical) order.

  1. Life is happening for us, not to us. I think odds are meant to play us, and misshape our reality just enough to make us question what type of players we even want to be.
  2. Coldplay will get you through any bad moment. A Rush of Blood to the Head was my audio chocolate on days when the world seemed a little too heavy-handed. It helps to have a lean, sexy Chris Martin at the helm.
  3. Get outside of your comfort zone! You’ll know you’re there if you feel absolutely terrified.
  4. WARNING: Wheelchairs will bite if you don’t treat them with care. Never place your hands underneath them while attempting to open the armrest. They will snap on you quicker than a Latina with pointy fingernails.
  5. Travel. Nothing makes you a better, more empathetic storyteller than the experience of travel.
  6. When in doubt, say yes. I often surprise myself when I do that. I’m still waiting for someone to ask whether I want to time-share an alpaca.
  7. Frida Kahlo is the best Halloween costume ever. That is all.
  8. Nurses are the real heroes. They see everything and still show up to work the next day.
  9. Laughter really does help. I can’t tell you how many times I’ve laughed through an awkward situation and felt better. You have to laugh when your orthopedic technician is staring at your crotch as he measure you for a new prosthetic leg.
  10. Exercise, stretch, move! A simple exercise routine will change your life.
  11. You know that saying, “an apple a day…”? I substitute that with an avocado. Yum.
  12. You know that other saying, “dance like no one is watching”? Scratch that. Dance like everyone is watching and you’re auditioning for Dancing with the Stars. Dance like you’re a Fly Girl on In Living Color and JLo is shaking her badonkadonk right next to you.
  13. Smile. Everywhere. Every time. Repeat as needed.
  14. Make time for yourself. It’s the one person you’re stuck with for the rest of your life, so you better like who you are.
  15. When you want to feel a little fancy, drink juice out of a wine glass. It works and you feel like less of a lush. Trust me.
  16. If you’re ever in an emergency room and asked to rate your pain from 1-10, go with 8. That’ll get you morphine. Again, trust me.

 

…and then I drowned.

Since I can remember, my relationship with water has been a precarious one, rooted in fear, confusion, and overall apathy. One hot summer day in Colombia, when I was 7, my family and I were visiting the community pool. While at the kiddie pool, a young boy playfully, but violently, shoved my head under the water. As I thrashed and throttled like a mermaid on steroids, he laughed, convinced I was having a good time. When the little menace finally let me up for air, I was manically coughing, my eyes full of tears and insult. With not a family member in sight, I remember staggering back to my mother as she casually sat by the adult pool, clearly oblivious to the trauma I had just undergone. Vulnerable and exposed, it was probably then when I began to harbor a phobia of water. Suddenly the summer trips to the pools and rivers seemed like a punishment and were met with drudgery. It became something I needed to brave through for my cousins and sister, who now seemed so much more courageous than I could ever be. And so my childhood years passed before my very eyes, with this fear of water never relenting.

calabria 6

Fast forward to many (yes, many) years later, and I found myself on the shores of Calabria, in a picturesque beach town called Tropea. At the age of 37, and with the same fears and trepidations of water still plaguing my psyche, I had one more fear to conquer. This trip would be the first time I took off my prosthetics and wore a bathing suit in public; the first time I would sit on a beach chair, the first time I would tan in the company of others, the first time I would put my body out there for the world to see. Needless to say, this was big.

After a hearty Calabrese breakfast, my friend and I made our way to the beach, a 10-minute descent from the hotel. With the 33-degree sun beating down on our backs, we got to the chair lift and were greeted by two very bronzed and fit lifeguards, who escorted us down to the boardwalk. They were effusive in their typically charming,
Southern Italian way, and clearly had been under the sun for most of their lives. I started to wonder if my tan could ever be as good as theirs, but all thoughts of vanity and image diminished the closer we got to the beach and our designated hotel spot.

Now, their glistening hairy chests were the least of my concerns, with my nerves rattling in the pit of my stomach like a bird in a cage. From the boardwalk I stood up, left the wheelchair behind, and held on to my friend’s arm as we steadily made our way over the sand and to the comfortable orange beach chairs. Our hotel neighbors looked up from their sunglasses and nodded, before returning to their regimen of self-indulgence. I sat down and looked out into the sea, the cacophony of waves both unsettling and alluring. Everyone around me seemed immersed in their own beach-time ritual; children collectively splashed in the water, women flipped over on their beach beds like golden pancakes, and men sleepily read their papers. Beach vendors paraded the shores with brightly colored tunics and necklaces, lugged around on portable racks. There was a stillness to it all that was both comforting and yet grating in a way I could only understand.

There I sat, my jaws clenched and shoulders caved in, unsure of where I fit in to all of this. I couldn’t do any of the things everyone else was doing. I couldn’t swim, and I could barely walk in the sand, let alone run or play like everyone else. The last 15 years came crashing back almost as roughly as the waves in front of me. How could I expose myself this way? Could I remove my prosthetics in front of everyone and not feel like a museum piece on display? Over the years, I have grown used to the stares and the occasional pointing, but this was a level of vulnerability and rawness that shook me to my core.

….and then I drowned. Not in the crystalline waters that surrounded me, but in my own self-pity. My fears took hold and morphed into bitterness and sorrow, and all my heart could carry in that moment were the fears of my past. What was meant to be a pleasant summer getaway turned into the dreaded childhood trips to the pools and rivers of so long ago. I sat there in my long tunic, with my prosthetics still attached to what was left of my limbs. My friend, Jessica, patiently waited for a signal to help, as I sat there in complete silence, squinting at the memories that still flooded back.

As she ventured into the water on her own, I sat back and dipped my hand into the grainy sand, gently poking and patting the mounds that formed. calabria 5 Occasionally a small stone or pebble buried in the depths would surface and be stored away in my tote bag like newfound treasure. A cold, misshapen stone, buried by the umbrella pole, made its way through my fingers. Like an archeologist with a fossil brush, I curiously wiped it clean and noticed it was not a beach stone at all, but the remnant of a mosaic tile; flat and maroon colored with beige wrapped around its edges. As my fingers studied its proportions and texture, I realized this tile didn’t really belong there, and yet somehow there it was, staking its claim to the sea, at one with its environment. And then it hit me: I was also different. I didn’t necessarily belong, but I too was there to stake my claim, to be a part of the world unraveling before me. The only person that I was punishing with my self-pity was myself. I was the only victim in my drowning, and I could either let this weight sink me, or be free of it.

I turned to my prosthetics, ready to let them go. I clicked the arm’s release button, pulling it away, and then unstrapped the Velcro strips from my waist, opening the upper half of my prosthetic leg that binds around me. Jessica took her cue, gently wrapping the prosthetics in an oversized towel, placing them on the sand. It was a sight to be seen: a foam leg with a pastel blue converse sneaker peeking out of a towel, and dainty silicone fingers protruding like something out of a horror movie. A little bit of ketchup in the wrong places and people would definitely have something to talk about!

As expected, the tension was palpable. Heads turned and eyes darted in my direction. Yet somehow and somewhere in the depths of me, I realized that in letting myself be completely vulnerable I now had nothing to protect myself from. I was free to be me, to be seen. Regardless of what was missing, I was whole. I knew I had just one more thing to do.

Jessica dragged an inflatable raft over to my beach bed and I instantly plopped myself over it, snuggling in to its warm rubbery embrace. The raft was hauled to the water, and without hesitation I jumped off and sat at the tip of the shore, letting the waves engulf me. The cool water was a much-needed reprieve, as my skin was drizzled with the cool ocean spray. We both sat there, inching our way closer and closer to the water’s depths until I decided it was as far as I could go. In that moment it’s as much as I could do, and I was ok with that. We sat there, feeling the sun on our moist hair, and smiled. We had come a long way.

Calabria was a game changer for me in more ways than one. It opened a door I had long ago closed, and now I don’t think I ever want to close it again. Feeling that vulnerable helped me realize my fear was a symptom of a deeper reality: the only outcome to fear is continuous loss, and the only ones that stand to lose are the ones that are consumed by it. I think of how liberating we must all feel when we choose to expose ourselves for who we are and not for how we think others want to see us. In the end, each and every one of us carries a deep-rooted fear, an insecurity, in a place we wish we could keep tucked away.

But we get so caught up in belonging and appeasing the masses that we forget the value calabria 7of standing out. We forget that our uniqueness, while personal in nature, is a universal component to everyday life and living; and accepting that is, in essence, what makes us belong. When we embrace the things we fear most, we take away their power and relinquish their control over us. They become an obscurity – a relic of the past that occasionally washes ashore but is eventually lured away by the current once again. Like that mosaic tile, we find that strength naturally holds a place within us, a place that embodies truth despite fate’s disparities. While I may not have gone deep this time, I know for certain that my next summer getaway will be different. I know for certain that despite my limitations, what buoys me is having a purpose – an experience to call my own – and those fears, while crushing and breaking at times, will no longer have a permanent place.

ZT Logo 02 (1)

 

A Generous Day

It’s always been a personal goal of mine to try something new on my birthday; whether it be taking a trip or trying a new experience. This year, I celebrated my birthday with a trip to Monte Generoso.  Having been contacted by their marketing team a few months ago, I was more than eager to visit this natural wonder, steeped not only in cultural history (125 years’ worth), but also home to one of the most breath-taking panoramic views you’ll see in Ticino.

Monte Generoso certainly lives up to its name, and in more ways than I could have imagined. This majestic mountain is  located on the border between Switzerland and Italy, spanning between Lake Lugano and Lake Como. A 30-minute ride on the Monte Generoso railway will get you to the summit (at 1,704m altitude), which includes two restaurants, an art gallery, and a conference room in the recently designed Fiore di Pietra, Mario Botta’s latest architectural gem. Not far away are various other features such as a bear cave, ice pits, a science observatory, and, of course, hiking trails beyond your reach.

The train ride definitely set the tone for what would be a memorable day. When we arrived at the station in Capolago, we were instantly greeted by Viviana, their media and marketing manager, who was quick to make us feel at home while she regaled us with stories of her upbringing, family life, and adventures on Monte Generoso. A friendly railway assistant showed up almost immediately and got us ready for our journey, as a small lift was pushed out and scooted over to the front of the train. I was rolled in gently on my wheelchair, and the metal contraption was manually hoisted up to the entrance. Almost before you could say “Swiss cheese,” I was rolled inside and propped in a corner, my eager friends by my side. And so our journey began, past flora and fauna, as our ascent dazzled us with a world untouched and seemingly forgotten. It’s a world where nature prevails in its entirety, and we are but the spectators of its force. Outside this tiny electric engine that could, the contrast of the ravenous mountains engulfed us. The landscape of peaks and lush greenery lulled the senses, reminding us that we were in a place unburdened by city life. The crisp air inflamed my nostrils, and it was literally like a breath of fresh air.

i-sBmbG55-XL
Photo by Marian Duven

When we finally arrived at the summit station, another railway assistant emerged, all smiles and pleasantries. The Fiore di Pietra (Stone Flower) towered over us, bearing the unmistakable imprint of Mario Botta. After a lengthy tour of the gallery, two restaurants, and a conference room, we were given a taste of the 360° view that Viviana so proudly boasted about on the train – and she had every reason to. Standing atop of the Fiore is a symphony of colors and beauty waiting to be absorbed. Up there, you feel an insatiable blend of longing,
joy, and reverence for all things not man-made. For those brief moments, everything seems truly possible. All my abstract hopes and dreams became a reality, and like those mountains, seemed as powerful and tangible in their making. We stood there silently, each fixated in our own solitary undertaking of this moment; each intent on creating a magical memory for ourselves. Like a penny in a wishing well, I released my inner most desires into the heavens like a kite soaring in the wind, and I smiled.

i-vtMwNN5-XL
Photo by Marian Duven

A first-class culinary delight followed the tour, as the head chef and waiters welcomed us to the Ristorante Fiore di Pietra. The hours pleasantly droned on, as the wine was plentiful and the courses were exquisite, each presented with warm, artistic decor. The feast ended on a high note, as the head pastry chef presented me with a birthday cake that was almost too beautiful to eat.

We of course dug in greedily and happily anyway. We walked (and rolled) off the scrumptious lunch, looking over the nature trails in the distance, and the science observatory, home to the largest telescope in Ticino. While I couldn’t do the bear cave or ice pits, or even take on the trails, I was still happy I could get this far in the wheelchair. With this sense of gratitude, our journey ended.

The train back to Capolago was filled with a newfound rigor and a familiarity that i-SPR6xKb-XLclearly meant we had all shared something special together. As we looked out the window a fresh breeze tousled my hair, and for a brief moment I felt the parallel of this train’s journey with my own. Over the years my life has taken me to places beyond my understanding and so often beyond my reach, but like this little engine that could, my own ascent has also proven uniquely rewarding. Like this little vintage train on its way to more promising things, my story has also given me much to be grateful for – and I truly am.

So often people talk about the inaccessibility of Switzerland, and yet they forget the efforts being made to progress and do away with this heavily imposed stigma. They forget there are places out there intent on creating a space that a disabled traveler could enjoy as well. While there are some activities I couldn’t take part in, I was still able to make it up to this natural wonder, deciding to instead enjoy what I COULD take part in.

But Monte Generoso isn’t just what it is for the beauty surrounding it: it is what it is for i-VFs94w9-XLthe people that welcome you there, cradling you with smiles and attention. It was the service from start to finish that I remember the most on this lovely trip. They say a big part of what makes an experience is the group of people you share it with. It’s most certainly true that we walk away from something just a little more touched by it, when the people that we share it with are focused on giving the best of who they are. I can’t thank my lovely friends, Viviana, the railway station crew, and the restaurant staff enough for the kindness they showed me that day.

Thank you again, Monte Generoso. You certainly lived up to your name in more ways than one.

As for my next birthday treat; well, I see hot air ballooning in the near future. 🙂

ZT Logo 02 (1)