Rome, Italy and Vatican City

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“Are you sure you have anything? Do you have any cash?”

I roughly pulled my classic backpacking-through-Europe knapsack on my back, the various bulges and attachments left it looking awkward on me. We were on the platform at the Hauptanhof train station near our apartment downtown. I grabbed my small travel wallet I kept inside my jacket and looked. No cash, just a credit card and ID.

“Here,” Dusty pulled a few 20 Euro notes from his wallet and handed them to me before rechecking the ties on my knapsack for the umpteenth time. “I feel like I should go with you, are you sure you’ll be okay on your own?” His eyebrows came together on his face as he looked at me.

“I promise I’ll be okay. George is meeting me there day after tomorrow and it’ll be great. Have fun at Dave’s wedding and please don’t worry about me.” I rubbed his arm up and down and pulled him in for a kiss. The train turned a corner on the distant track and we watched it approach the platform. I gave him one last long hug, trying to linger in his arms but not wanting to give away my hesitation about my confidence in traveling to Rome alone. The air hissed as the train slowed and the mechanical whirr announced the doors opening. I climbed aboard and as the train began building speed, I watched him shrink as the platform disappeared from view.

 

I’m just being dramatic, I thought to myself. There was nothing to be afraid of traveling by myself to Rome from our home in Stuttgart, Germany. No, I didn’t know Italian but I was pretty conversation in Spanish. And, well, no I didn’t know anything about the transportation in Rome or how to get around from site to site but I could figure it out, right? My younger brother was meeting me in Rome two days after I’d arrive for a weekend of brother-sister bonding in one of the most important sites of the development of Western civilization. Both of us history buffs, we were sure this would be a great weekend. Right?

 

I should point out here that I’m a paraplegic. A new one too, I’ve only been injured for a few years and I’m absolutely terrible at all things wheelchair. I fall out of my chair constantly, usually because I hit bumps or ran into something that could have been avoided if I had been paying attention. I would eat whatever I wanted and drank a minimal amount of water, both of which did nightmares to my already partially paralyzed digestion track. I tried hard to keep my chronically cold legs and feet warm and covered, but ended up with skin issues on both anyway. I was trying to be a good paraplegic and take care of myself, but for the most part I caused a lot of problems for myself simply out of ignorance.

 

I got to the airport and was lifted and pushed onto my flight. Disembarking from my flight, I was helped by two large Italian men who oozed a sweet perfume of their aftershave and flirted unashamedly with me like I had been warned Italian men will do. “Si, si,” I’d laugh back with them, “Grazie!”. They blew me kisses as I loaded into a cab and took off for my hostel.

 

We drove through streets with crumbling, beautiful stone buildings lit up in the black night with modern lights. I could hear the people on the squares we passed yelling and laughing, not caring how loud they were this late into the night. As we drove on past city streets and squares lit golden by the street lights, streams of fast Italian and loud laughter flew through the taxi. I was in a bubble of travel bliss.

 

Until we arrived at the hostel. Or more appropriately, the crammed apartment in an old, stone building on a street with no streetlights that someone turned into a hostel. I came inside and was greeted by the musty smell of old socks and disinfectant, although by the look of the peeling paint on the tiny entryway hallway I couldn’t believe disinfectant was frequently used. “buonasera,” a tired twenty something behind the counter of the entryway hallway welcomed me. He rattled off in Italian until I apologized and asked “In inglese per favore”. “May I, ah, help you withah anythinah?” He said again in English. He showed me to my “room”, which I had requested be a private. It wasn’t. Turning the corner from the cramped entry hallway, I saw the bathroom sized kitchen to the left and two doorways to the right. My private room had already been occupied, when I showed up to my reservation an hour later than I said I’d be there they had given it away. Instead, he opened the door to a dark bedroom of 3 bunk beds pushed up against the wall and a mess of luggage in the middle, hitting me with the source of the dirty sock smell I noticed earlier. “Dis is youra key,” he pressed a key into my palm. I looked at the beds on the bottom of the three bunk beds. They were all occupied. “I can’t get to the top bunk,” I whispered to him, but he just shrugged and gestered to the sleeping forms of the occupants. “Dere is nothin I, ah, can do” He shrugged again and left the room. I dropped my knapsack and determinely pulled out my toiletry kit, resolute to make myself at least a little more comfortable washing off the dirt of a long, traveling day. The connected cramped bathroom had mold stains crawling up from the tile and the communal toilet brush was stained yellow. I gagged a little trying to get ready for bed but I was determined to emulate the laid-back, adaptable traveler in my favorite books and movies. What’s a little dirt to me? I can do this.

 

I got back to the bedroom and threw my knapsack on my bunk, trying not to teeter too badly on all the sandals and shoes of the other occupants covering the floors. I knew enough to know that in a crowded hostel, it’s better to sleep with your belongings like a pillow than trust the lockers, no matter how strong your lock. Luckily the bunk bed had railings on the side and if I reached up just high enough, I could grab the ledge of the railing with one hand. I had pulled out an old bike lock that Dusty insisted I bring and, saying a quick prayer of thanks for my insightful husband, I locked my expensive and invaluable wheelchair to the corner leg of the bunk bed. Then I swung my hands up and pulled myself over the railing into bed.

 

I had set my alarms for early the next morning so I could get a head start of seeing some of the sights of Rome, but I awoke to a loud, rapid Chinese conversation. Two of my dorm occupants were sitting on the bed and floor and comparing pictures on their phones but laughing and yelling five decibels louder than necessary. I felt something itch me on my arm and I looked down as I reached to scratch it.

 

There was a line of three dark bugs crawling up my arm.

 

For anyone who hates all things insects as much as I do, don’t be ashamed to involuntarily shiver with disgust like I did. I’m not a prude in the sense that I need five star cleanliness from a public facility, but having bugs crawl on you as you sleep does cross on of my lines.

 

One half hour and a heated argument with the twenty something clerk about a refund later, I was back on the streets in my chair with my knapsack awkwardly hanging off my back. I had no other plans of where to stay, having made that reservation for the entirety of the trip, no idea where I could find Wifi and no way to contact either George or Dusty. I had my phone but didn’t have an Italian SIM. That meant that I could use my German SIM card and call who I needed to call on my German phone and access the Internet, but it would be expensive eat up my prepay reserve very quickly. I needed to find a Vodafone refill station and quickly or else I wouldn’t have anywhere to stay tonight and George wasn’t arriving until tomorrow.

 

I wandered the streets of the northern downtown neighborhood of modern Rome, trying to keep my knapsack from falling off and pushing myself up over countless cobblestones, curbs and other nightmare terrain for anyone on four wheels. But I needed to get online to find another hostel, so I tried café after café to see if anyone had WiFi. No one did, but I downed enough expresso to keep me going. Every time I passed a hotel, I tried entering to see if they had a room. I say “try” because most buildings would have entryways higher than the street and sidewalk, so there was always a step to enter. This is common throughout Europe and a huge pain in the ass when you’re in a wheelchair, alone, with a heavy backpack. Every time I did a wheelie to propel myself up or down a step, I was sure the weight of my knapsack would toss me over. “Avete camere?(Do you have any rooms?)”, I’d ask the clerks at each counter, becoming more and more desperate for a room as the day wore on. By lunchtime, I sat in a café exhausted and ready to accept whatever I’d have to pay to use my phone. I wanted so badly to hear Dusty tell me that this was just part of the adventure of traveling, but he’d left the same day I did to be in a wedding for a friend back in the United States. He didn’t have a phone that would work in the states and there wasn’t a way for him to help, anyway. I’d just worry him and the last thing I wanted was for this misadventure to escalate any more than it already had.

 

I quickly hunted for another hostel available in the city that George and I could stay for the next four nights and jotted down the address of my top choice. I pulled up a map of Rome from a quick google search and saved the picture to my phone, giving me access to subway stations and road names just as a picture even if I ran out of service. And sure enough, as soon as I ended the call with the owners of the bed & breakfast I’d found, a chipper voice alerted me that I had no money left over to make another call.

 

I took a quick glance at the map and found my way to the nearest subway stop. There are only a few lines in the subway system of Rome and it seemed straight forward enough to find my way. I stopped at the steps leading down to the subway stop below and looked all around the intersection to find an elevator. No luck.

 

“Is there a lift?” I asked a passerby before they descended the stairs. He shook his head no and rapidly gestured below before hurrying down the steps. Alright, then. I’ll try the next station.

 

A few blocks away was the next stop on the subway map. Again, only steps with no lift. My phone was able to do a GPS walking guide for me to follow to the B&B but it tried to lead me to subway stops the entire way, with none of them providing lifts for me to be able to take the subway. An hour of rolling later, I was pushing the buzzer on the doorway of the unassuming B&B and praying that the lack of a sign on the door was not an indication of its’ credibility. A small, round Italian man with a booming voice and gut-jiggling laugh opened the door for me and helped me to the ancient, open wire elevator to their apartment on the second floor. Looking back, what I’ve just described is the plot for any serial killer, mystery novel but at the time I was too exhausted to panic. Thankfully, he was a nice man with a wonderful wife and clean B&B and I’m still alive today.

 

I met George the next morning through a series of waiting around for his train, him walking right past me and us exchanging frantic “WHERE ARE YOU” emails whenever we found WiFi. But once together, we began running around Rome emulating the exact tourist behaviors that we despise on principle. But who can’t do a 360 degree turn around the Colosseum and wonder about the gladiators and lions locked away below? Who can’t take a selfie at the Pantheon or try a melodramatic filter of the theatric Roman Forum or Palatine Hill?

 

Colosseo, Rome

Colosseo, Rome

Colosseo, Rome

Colosseo, Rome

Colosseo, Rome

Colosseo, Rome

By the end of the second day, I was thoroughly overwhelmed by the magnitude of historical significance around each corner of Rome. My entire Western education, nuances and culture is indebted to the people who walked on these same roads where I’m rolling. The significance of this relationship drove me to take every picture of every turn that I could, wanting to capture every second to immortalize that feeling.

 

As expected, these same ancient Roman roads were a complete headache and source of endless frustration. I had not acquired the durable wheelchair attachment FreeWheel yet and was left trying to wheelie myself over every lopsided cobblestone and up every step to enter buildings. George pushed and pulled me through each attraction, but I had to bounce and jolt on every sidewalk. When we approached the Colosseum, we could see the line rounding from the site all the way down the street. It was a hot day, sunny in the bright way that only Italian sun brings and it wasn’t going to be pleasant waiting in a line for hours. I hadn’t bought us a ticket in advance, allowing us to skip the line, but we bypassed the line and approached the front desk anyway. I’d learned at other attraction in Europe and the US that sometimes there’s a special handicapped entrance if the main entrance has steps. When we approached the desk to ask if this was the case for the Colosseum, a guard at the gate at the front of the line motioned to us and lifted the cord on the entrance.

 

“We don’t have tickets yet,” I apologized to him as we approached. He shook his head, went to the desk and spoke with the attendant and returned with two white passes in his hand. “For you,” he gestured to my wheelchair, “and you (motioning to George)nessuna carica (no charge) “. Score!

 

We entered the Colosseo and as we went around the circular perimeter above the remains of the ancient spectator seating, I rubbed my hands against the rough yellow stone columns. I looked down at the remains of the amphitheater stage below, the cells for the animals and gladiators under the floor of the pit now visible. I thought about the gladiators emerging from one of the crumbling entrances and was dumbfounded that something so raw and violent was such popular entertainment. I learned spectators in the lowest seating could get splattered with hot blood and I responded by taking a selfie. Like any tourist would do.

 

We ran around the rest of Rome, eating delicious Italian at the little local restaurants recommended by our fantastic B&B owner. I was careful to watch how many expressos I drank as there was little access to bathrooms of any sort, let alone accessible ones. Early in our move to Europe two months prior, I had given up trying to ever find a bathroom large enough for me and my wheelchair and instead got accustomed to pivot transfers from my chair into the bathroom stall. Such was the situation throughout Rome.

 

Rome

Rome

Rome

Rome

Rome

Rome

Rome

Rome

When Sunday came, I woke and put on the special earrings I had brought for the occasion. The reason my brother and I had chosen this specific weekend to go to Rome was not happenstance. There was to be an induction of a statue of the Virgin Mary from Portugal into the possession of the Vatican. This statue of Our Lady of Fatima would be presented and celebrated during the weekly Sunday Mass, which would be given by Pope Francis himself.

 

My mother died a Catholic woman, having completed confirmation just a few years prior to her death. Her passion in her faith was celebrating the Virgin Mary, leading my mom to pray continuously for the Holy Mother to watch over all of us. As a mother and as a Labor & Delivery nurse, my mother had an immensely strong kinship with Mary that I’ll never forget. She had always wanted to go to Mass at the Vatican; I wanted to go in her place, on the same weekend that her Mary would be there.

 

We arrived at the gates of the Holy City early Sunday morning and a crowd was already surrounding the perimeter. The Vatican is walled city that closes to the public before Mass on Sunday to quell the thousands of people who attend. We joined the fray, George pushing as I tried to squeeze us to the front. When we stopped, there were a dozen nuns in grey habits around us talking to themselves in Spanish. George and I are both proficient in Spanish and we tried talking to one nun, a woman with bright eyes who looked about our age. “() (When do we enter?”, I asked her. “() (At seven),” she answered, giving us a funny look. “Wait, do you speak English?” she asked. “Yes! We’re Americans,” I answered. “Me too! I’m from California,” she laughed. “Where is your convent?” I asked, gesturing to the other nuns dressed similarly around her, although her headpiece was different than the rest. “In Spain,” she answered. “God led me to join after I visited the convent studying abroad in college”.

 

We talked for a few minutes and she got the attention of her sisters to help us get to the front, a pair of Italian grandmothers on our right offering to help as well by pushing on my wheels. She told us there was a special section for people with disabilities, but she didn’t know how I could get to it so she helped us get to the guards at the gate. The guards of Vatican City are the elite Pontifical Swiss Guard, males from Switzerland who have trained for years, had to pass a multitude of aptitude and skill evaluations, have to remain unmarried, be under the age of 30 and at least 5ft 8.5in tall.*

 

Upon approaching the gate, Italian grandmothers in the crowd helping George and our nun friend push me through the throng, one of the guards spotted me and opened the entrance for George and I to pass. We waved goodbye to our friends and followed our brightly colored red, orange and blue uniform escort through the Piazza di San Pietro to the steps of St. Peter’s Basilica.

 

A row of two chairs had been arranged facing the podium and altar arranged on the top steps of Basilica di San Pietro. Rows of chairs sat perpendicular to us on the top steps as well, facing the podium from the site. I turned to see the sun begin to rise above the walls surrounding the city and a ray shone on the red granite obelisk behind us. People began milling through the entrances to the city and pushed to the front of the barricades I saw had been arranged to create pathways through the crowd. The Pontifical guards herded the people to the right barricade and I saw there were kneeling benches forming countless rows to the back of St. Peter’s Square. George and I nodded and greeted the other people sitting with us at the front, which consisted of persons with Down Syndrome and their families, amputees and a developmental young man with his brother. George and I watched the nearly empty Piazza behind us become a moving mass of bodies. The seats on the stage of the steps in front of us were filled as monks in white, black, red and other colors of robes filed in. Finally one monk with robes of ceremonial finery approached the podium and announced the start of Sunday Mass.

 

I’m not Catholic and although I attended a few Masses with my mom, I didn’t remember any of the formalities, customs or ceremony of a traditional mass. A melodic song of Latin hummed through the crowd and when the brother declared each verse, the sound pulsed in our chests. The crowd behind us fell on their knees in unison as the pitch rose and fell in song and chant from the altar. The sun was high over the Piazza now and the heat blanketed us in a sticky film with our shirts starting to glue to our backs. The smell of thousands of people sweating started to waft. The guards, however, did not seem to be bothered by the heat or the crowd but continued to pace the walkways between the barricades in their long sleeve, long pants uniform.

 

Suddenly, there was a break in the Latin and everyone was looking at something at the far end of the Piazza. I couldn’t make out what was moving towards us, but as it came closer I saw that it was the statue of the Virgin Mary that was getting inducted today. “There she is!” I whispered to George and gripped his hand. He nodded and we watched the parade of four monks carrying a life-size golden statue of the Holy Mother adorned in colorful flowers for the ceremony. Her face was visible for the few seconds she was near us before they began to climb the steps of the Basilica towards the Pope. Her face radiated of something that could only be what true harmony looks like. She was dressed in a simple peace, the kind where you know for certain what you were put on life to do and the utter fulfillment of doing it. I was speechless for a second; the Virgin Mary had never meant anything more than one lasting connection I had with my mom after she died. But, as they walked her to Pope Francis, her peaceful face gave me the gift of knowing exactly how serenity looks.

 

The Pope blessed the statue and then began his homily, thankfully repeating his words in English as well.

 

“It is the astonishment of realizing that God, to become man, had chosen her, a simple maid of Nazareth. Not someone who lived in a palace amid power and riches, or one who had done extraordinary things, but simply someone who was open to God and put her trust in him, even without understanding everything,” Pope Francis continued in his soft, strong voice. This is why my Mom loved the Holy Mother; she was the example of an idea Mom drilled into my head time and time again. I could hear her voice saying “who you have been does not indicate who you can be. You can be anything you want and God has something He wants you to be more than anything”.

 

Vatican City

Vatican City

Vatican City

Vatican City

Swiss guards, Vatican City

Swiss guards, Vatican City

Vatican City, Sunday morning mass

Vatican City, Sunday morning mass

Vatican City

Vatican City

Pope Francis, Vatican City

Pope Francis, Vatican City

Pope Francis, Vatican City

Pope Francis, Vatican City

My hands clasped under my chin as I bowed my head and listened. My heart was slowly sinking down to my stomach and I could feel it’s weight pull my chest down. Maybe it wasn’t such a good idea to come here. This hurt, a lot, to hear about Mary, a woman I knew so intimately as part of my mom. In a way, it was my mom that was getting welcomed into the Vatican today. Where she had always wanted to see, always wanted to belong, was where she would be from now on. I was confusingly angry at Pope Francis, a man I admire so much, so talking about Mary as if he had a relationship with her as strong as my own. I rocked back and forth and continued listening.

 

“May she help us to be open to God’s surprises, to be faithful to him each and every day, and to praise and thank him, for he is our strength. Amen.”

 

But then I couldn’t let his words sink in any more, for Mass soon ended and Pope Francis was leaving his ceremonial seat for a white vehicle parked by the side of the steps. The PopeMobile! I had seen pictures of this car and had heard that Pope Francis had asked for the bulletproof glass that protected the Pope as he rode to be removed. As the car began to slowly make its way on the walkways through the barricades, I saw why the bulletproof glass had previously been installed. The Pope rode through the thousands,, touching hands and kissing the foreheads of babies that the Swiss guards or CIA-like men in black suits lifted to him. His hand reached out to pat heads and he wove around the crowd to reach every block of people waiting to see him. It was nearly 45 minutes before he reached the front and began to come through the handicapped section.

 

He seemed taller standing in his white vehicle than he looked projected on the big TV’s they have situated all around the Piazza. Men with cameras and men with black suits strode in front and around the PopeMobile while the Swiss guards marched in two pairs of two at the head and bringing up the rear. His robe was the same stark white as the car and he smiled modestly, as if he didn’t understand everyone’s excitement to see him. The PopeMobile suddenly stopped and a black suited man helped Pope Francis down to the street.

 

A young boy a few people down from me in our section was crookedly lying in his wheelchair, a family of several generations of women surrounding him. The boy’s body was twisted and he wasn’t able to turn his head fully forward to see the Pope striding towards him. I couldn’t hear his prayer, but Pope Francis laid both hands on the boy and lowered his head praying. He then reached down to pull the boy forward from his wheelchair into a hug. The women were crying and fussed mercilessly over the boy when Pope Francis broke their hug. He then stood to face all of us and made the sign of the cross before lifting his hands and blessing every handicapped person in our section. He returned to his PopeMobile and continued on, leaving behind a breathless group of people who had just been fed an enormous amount of hope.

 

 

But once he was gone, a new realization hit me. “Shoot, George, I gotta pee,” I whispered to my brother sitting beside me. He looked around for a bathroom and we spotted the long, winding line in the distance. He stood and bent over to push me towards the line, trying not to block anyone’s view. When we arrived at the bathroom, which seemed like a cave into the walls with two private bathrooms inside, the line was indeed long and followed along the inside perimeter of the stone walls of the city. But one of the guards spotted us at the door of the bathroom and gestured to follow him. He went into a small cave and then gestured to us to follow, where he then led us to a private, accessible bathroom. Thank you, God.

 

Now I have a brief caveat to add here; I can’t poop like an able bodied person anymore. Parts of my digestive track are paralyzed now so I don’t have the ability to tell my body “hey, it’s time to poop” the same way I can’t tell my body “wiggle those toes already, darn it!”. So sometimes accidents happen and I’ve learned to stop crying, clean up and move on already from it. It’s not that big of a deal. Unless you had an accident when you were getting blessed by the Pope. I wanted to laugh and I wanted to sob and I wanted to give up and I wanted purge myself of the flood of emotions that had engulfed me over the past hour. I cleaned up (thanks to a handy emergency kit I keep on me) and joined George outside.

 

Mass had ended and the thousands were now all trying to exit the city through it’s numerous, but narrow gates. We squeezed into the crowd and I gripped George’s hand to keep us together, although I did lose sight of him from the in between the mass of bodies a few time. Now that I’m roughly eyelevel with a person’s belly button, I have a hard time in crowds and getting pushed by dozens of hands connected to too many moving bodies. We finally came out onto the street and I took a few deep breaths, but the dam of emotion in me had risen too high. I missed her, more than anything, I missed my mom and I wanted to call her, send her a text with a picture of her son and daughter at her Vatican. Tell her about the Virgin Mary parading through today. Ask her what Latin hymns meant. Hug her on the steps of St. Peter’s.

 

I choked on sobs as I stopped in the middle of a pedestrian street, giving up on trying to roll over the persevering cobblestones. I cried hard, trying to fill each tear with as much grief and pain as I could so it would leave my body. George leaned over from behind me and wrapped his arm across my shoulders to push me to the seclusion of a little café. But then we just stopped there, his grip tight on me and giving me his silent acceptance of my breakdown. Melodic Italian flowed around us as people yelled out greetings to each other, laughed at the mundane and flirted. But for me, in that moment, I was back in Indiana and watching her disappear from my life all over again.

Boarding a Train in Europe

There’s nothing easy about trying to make mass public transportation accessible in older European countries. There’s no American Disability Act that ensures all vehicles of public transport be made accessible, which leaves a wheelchair-using tourist like myself feeling a little lost. That split-second feeling of entitlement (“What do you mean you didn’t make this train car specifically for someone like me?”) that comes from only ever knowing the accessibility laws of the United States was soon to be hushed from one encounter after another of inaccessible transportation (I’m looking at you, Italy). But what was so surprising and so reassuring was how the people of every country, every public transportation worker in each city, went to extreme lengths for me and my party so we could get to our destination. Old lifts were dug out of hidden corners of train stations, strangers carried my wheelchair up flights of stairs while Dusty carried me and workers continually took time to escort us through alternate routes when an aufzug (German word for elevator) was broken. Thank you, people throughout Europe, for affirming a belief in humanity that people will help.

Here is a short example video of how to exit an older train in Germany:

Finding Ethel: Part 3, Coming Home

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The last few days on the farm were filled with happy tears and warm hugs of hope and goodbyes. To be honest, I was intimidated by the amount of special attention and love I saw people had for Ethel. She is undoubtedly special to the Service Dog Project community, a beloved star and favorite. Her spot shaped like a heart on her shoulder draws attention and then her blue eyes will melt your heart. Her face looks up at a person with hope for love, or more likely for a cookie, and then she returns the attention with leaning her body against you with trust. Her calm, aged soul sets her apart from other dogs; she’ll play and romp, but only when she knows she’s off duty and I’m still alright. She’s easy to love on and she makes it even easier to fall in love.

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When we left the farm I felt the warm presence of the entire SDP community, both in person and online, wishing us well on this journey. One of the greatest gifts we received from this community was not the numerous treats and fluffies, although we LOVED those, but was this ever-ready trust. I was trusted to love and take care of this incredible dog, this life-changing animal, from the start. I was trusted from the first week that I was going to love Ethel with the same passion that her community loved her. I was trusted to be worthy of Ethel’s training and help. So during the last few days on the farm filled with well-wishing goodbyes, I was intimidated that maybe I could never prove how much being trusted meant to me. How much it empowered me to believe that I am a capable human, not a broken one, because someone else believes that I can take care of and love Ethel on my own.

 

We drove off on Friday for our road trip to Missouri with our small car stocked with bags of food, vests and leashes, gifts and treats for Ethel. She laid in the backseat on a dog bed with layers and layers of fluffies, a queen of the car. Dusty and I are no stranger to road trips and feel so comfortable as a couple on the road that we’ll go for a drive sometimes if we really need to talk. Our first real date lasted a week driving to New York City to see the New Year’s Eve ball drop. We drove from Massachusetts to Salt Lake City, Utah for Dusty’s first assignment. We took our car all over Europe. Being a paraplegic in the car can be complicated with managing back pain and weight shifts to avoid any skin issues on the bum from sitting in the same position too long. But it also has it’s perks; because I use catheters, I can hide under a towel in the front seat and pee into catheter bag without needing us to pull over for a rest stop. I’ve successfully peed on the autobahn in Germany going 115 mph and can proudly say that I have peed on the highways of every country in western Europe.

Times Square, New York City, New Year's 2008

Times Square, New York City, New Year’s 2008

 

Times Square, New York City, New Year's 2008

Times Square, New York City, New Year’s 2008

 

Times Square, New York City, New Year's 2008

Times Square, New York City, New Year’s 2008

Times Square, New York City, New Year's 2008

Times Square, New York City, New Year’s 2008

Nine hours of driving south of where we were in Germany is the coast of the Mediterranean. One long weekend we decided to drive down to that coast to the beautiful Cinque Terre, Italy with a buddy from Dusty’s unit. Cinque Terre is a UNESCO sight on the Mediterranean coast of northern Italy and is considered one of the most beautiful historic sites in the world. The five cities that make up the Cinque Terre area are “walking cities” where cars are disallowed within the city limits and visitors can hike in between the cities and walk along the cafes and beaches. You are allowed to drive north of the cities and there are roads to drive to the edge of the city limits as well. Hiking in between the cities was not appealing to me to try, so we drove. And since Dusty was driving, we did some exploratory adventuring on some of the steeper roads, which I recorded here. The roads were on the sides of cliffs over the Mediterranean or steep vertical farms the brave Italians grew. I could reach my hand out and touch the sides of the cliffs next to our car as we drove, overhanging wild grape vines reaching in to climb through the window. When we came to an overlook, Dusty and our friend would jump out to peer over the edge or climb on the roof of the car for the best view. My apologies to any Tuscan Italian that disagreed with our adventuring methods, but I was so grateful to be able to see some of the incredible sights of this area that would’ve been otherwise inaccessible.

 

Vernazza, Italy

Vernazza, Italy

Cinque Terre, Ital

Cinque Terre, Ital

Cinque Terre, Italy

Cinque Terre, Italy

Cinque Terre, Italy

Cinque Terre, Italy

So when we got Ethel loaded up in the car, we were excited to share this part of our life and our love of road trips with her. But as soon as we hit the highway, as I excitedly pulled out all her toys for her to play with, she flopped over and promptly fell asleep. So much for making memories on the road.

 

We had trained to tell Ethel to “go potty” whenever we needed her to and this proved invaluable on the trip. But as soon as we got into Pennsylvania, as I crocheted in the front seat and Dusty jammed out to Dispatch, temperatures dropped below fingers-turning-blue freezing. We pulled over for an Ethel potty break, but Ethel was so comfortable and warm perched on her queen bed she fought us getting out. Imagine a 130lb dog digging her front paws in the dog bed while Dusty stands at the door in the freezing cold trying to tug on the leash and then me in the front seat, turned around to pull on her harness and using all the commands and training I knew to coax her out. Ethel just wasn’t having any of this cold business. When we finally got her out of the car, Dusty walked her around on the extended leash as I told her to “Go Potty, Ethel!” from inside. It was so cold, but Ethel let us know quickly if she needed to go by either squatting or dropping down to the ground and refusing to move any further. We booked it through the cold, trying to make it south to any promise of sunshine. By the second day, we had made it to our halfway point of Indiana. Time to see friends and for Ethel to meet The Family.

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The Family awaited us to arrive for lunch the first of the two days we took to rest on our trek to Dusty’s next assignment in Missouri. I asked Ethel to “get dressed” in her vest and leash as we parked at my sister-in-law’s house and I took some deep breaths before we went into the house. I am all about Cesar Millan’s theory of putting out “good energy” to your dog, being in a calm and assertive state when you give commands. So even though I was nervous about my ability to properly introduce Ethel to The Family without confusing her, I took some deep breaths and tried to put out my pack leader energy. We came in the house and Ethel stayed by my side as I received and gave hugs and then I put her in the “Down, Stay” position by the couch. I stayed close and enjoyed hearing about my sister-in-law’s job with some preschool kids who like to crunk and got my mother-in-law’s advice about where to buy avocados. After twenty minutes I took off Ethel’s vest and let her roam the room to sniff all the new people and furniture. I had prepared The Family with treats in hand and Ethel went from person to person, getting treats and letting them pet her. By the time The Family sat down for dinner, Ethel had chosen her favorite, my sister-in-law, and was content to lay down by me at the table. I may have over emphasized to The Family how Dusty and I give a lot of praise when Ethel goes potty, because when Ethel took a squat they cheered so loud she got so startled she sucked it back in and forgot what she was doing.

 

GiGi's "Welcome!" pie for her grand-dog

GiGi’s “Welcome!” pie for her grand-dog

After dinner with The Family, we spent the night with two of our good friends from college with Dusty. One of these brothers and his fiancé came down to spend time with us and we all laid out in the hotel pool that night, just talking. Ethel had achieved total boredom with our shenanigans earlier at The Family dinner, then at the hotel and now finally at the warm hotel pool. Over beers, we talked about how, as relaxing as the break from the road was, Dusty and I starting to feel exhausted in our hearts from being unsettled. We had packed up and shipped everything in our apartment in the beginning of January and had been living out of the same suitcase ever since (this was the beginning of April). But it felt like we’d been roaming for much, much longer. I’ve moved 18 times since my mom died when I was 17. Our family home was sold and my father, brother and I hopped from one dirty apartment to the next until I left for college. The military has also given us the chance to live in three different regions of the United States and two different countries in 5 years. The longest time Dusty and I have had an address together as a couple was the 18 months we were in Germany. Needless to say, the only roots we’ve put down are metaphorical. But we do have roots; we’ve planted and grown and intertwined strong roots in each other.

 

The seeds of those roots were carried by post masters across the United States in long, cheesy letters we wrote each other while I was in high school. Colorful envelopes, penned LOL’s and smiley faces and the P.S. I can’t wait to see you soon!’s budded those seeds from the spouts of just talking to the stalks of dating. His letters found me checking the mail every day in the hot, muggy Indiana summer as I got ready to go to work at the hospital. My letters found him in disgusting frat-like houses while he worked with friends in Florida and then at college. Dusty spent a year working with a Christian missionary group in Clearwater, Florida and during that time, he wasn’t allowed to date per group rules. So, obviously, I sent each letter in pink envelopes decorated with hearts, lipstick kisses protected by clear tape and far too many x’s and o’s to his total embarrassment.

 

That summer I was 17, ready to be done with my upcoming senior year, angry and broken from grief and doubting that love could ever be unconditional. Love had to have limits, like everything else. “I will always love you… unless that gets tough do to… unless you want to do something I don’t like….unless I find something better.” I didn’t give Dusty even the chance to change my mind. Then, as the summer came to an end and my backpack was pulled out of hiding under a pile of clothes, one short letter from Dusty arrived.

 

“So my bros and I had a great jam session last night out in the living room. Rocking out to some Dispatch.. pulled out the harmonica… got into a little Dave Matthews. Good times. They don’t really agree with me transferring from here at U of E to the U of D next semester for the ROTC program. It means a lot that you support me. You mean a lot of to me. Do you think I could come up to you in Btown and I could tell you what you mean to me over dinner sometime?”

 

Oh boy. Very little suave game in these letters, but at least he tried. Reading this made my heart skip and my face break into a smile, but then the rock pitted in my stomach quickly pulled my hope down to the bottom. Opening my heart to someone, to anyone, would spill out the flood of hurt and grief I knew was in there. And before I could get all that pain to drain out, I believed that eventually Dusty would cause more hurt to pour in. I didn’t think I was strong enough to carry all this pain in my heart and try to add more. So I wrote Dusty back:

 

“Hi. To answer your question, no. Because of all this: 10 Reasons Why You Should Not Date Me”…

And I proceeded to spill out all my fears about him and all the ways I was broken. I explained in detail everything that was wrong with me and I painted a picture of myself as just this absolutely disgusting, horrible choice. I sent the letter and looked into if I could have cat in college, absolutely resigned that I would be single forever.

 

And then a few days later I got a call.

“So you’re saying I have a chance.”

 

And so we began.

Photo credit: Braun Photography, 2009

Photo credit: Braun Photography, 2009

 

Our life together is made up of friend’s couches, hospital beds, hotel rooms, borrowed beds and hostel bunks. We’ve wandered ever since these letters. But no matter if we’re in a period of time where we’ll miss having clothes hangers or a sink, not know where our mail is or want a bed that’s not on something with wheels, we never stop feeling at home when we’re together. Home is the place my husband has for me in his heart. And I hold his home in my own. And now, 7 years after these letters, a new home has opened up in both of our hearts. A home for four legs, blue eyes and a waggy tail. Welcome home, Ethel. Welcome home.

Fort Leonard Wood, MO

Fort Leonard Wood, MO

 

Finding Ethel: Part 2, The Second Week

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There were a few things about owning a Great Dane that came as quite a shock to me over the weeks at the farm. For one, I was very surprised by just how large Ethel’s poops were. It’s not that I’d never spent time with big dogs before. In light of the newest additions to the Service Dog Project from the Netherlands, I’d like to share my experience of when I truly knew what “big” meant for dogs.

 

We left Germany last Thanksgiving to share the holiday with some of Dusty’s treasured friends from college. They were also stationed in Europe and were currently residing in Italy, working with education and outdoor recreation for soldiers and their families. We joined them in the northern reaches of Italy, where they were helping to host a group of soldiers having a skiing holiday in the Italian Alps.

 

I drove through the most hairpin turns I’d ever experienced as we navigated the Alps to reach our friends, my GPS route looking more like a crazy straw than a route. If GPS’s could laugh, I swear mine was. Due to the horrendous nature of Germany traffic (our town Stuttgart was called Stou-gart, in German stou= traffic jam), we always left for our road trips at 2 or 3 a.m. and were well on our way before most of the back-ups could happen. At the time, we thought this strategy was genius. Instead of leaving at 6p.m. on Friday night like everyone else to only sit in traffic for four hours, we had dinner with friends and frighteningly amounts of coffee to leave in the early morning. Again, genius. Or so we thought until we began driving in the dawn light through the ice and snow on the tiny, windy roads of the Alps.

 

Cervino and Matterhorn Mountain, one side Italy and the other Switzerland

Cervino and Matterhorn Mountain, one side Italy and the other Switzerland

By God’s grace and my terrified determination to go 20km below the speed limit, we made it alive to Cervino, Italy. I had never heard of Cervino, but I knew the town by the more familiar and infamous name of Matterhorn Mountain. This mountain lies on a range directly on the country lines of Italy and Switzerland. On the Italian side, the mountain and town are called Cervino. On the Swiss side, it is Matterhorn Mountain and its’ town of Zermatt that can only be accessed in the winter by train. The group our friends were helping to host was to take soldiers and their families up to this incredible mountain from the Italian side and have a Thanksgiving weekend of skiing in both Italy and Switzerland.

 

Both the Cervino and Matterhorn regions of the same mountain have very distinct and defined traditions concerning drink, clothes, language, music and dance. In Italy, we learned about the local drink coppa dell’ amicizia, the cup of friendship, a shared wooden bowl called the grolla with spouts to pass along the table so that everyone can partake in the coffee liquor that is set aflame when served.

Cervino, Italy

Dusty trying the coppa dell’ amicizia in Cervino, Italy

The Italians we stayed with were warm and welcoming, even trying to serve a traditional American Thanksgiving dinner to us. But both the Italian and the Switzerland side have a shared, revered tradition of loving and using the esteemed service dog the St. Bernard.

 

Cervino, Italy

Cervino, Italy

Cervino, Italy

Cervino, Italy

Matterhorn, Switzerland

Matterhorn, Switzerland

These beautiful, long haired bear cub-like dogs freely roamed the ski lodges up on the mountains. I didn’t ski that weekend, but Dusty took videos and photos for me of the ski lodge St. Bernard’s that still protect the explorers of the mountain today. (See pictures and videos of that weekend Here!) The architecture of this area, including the ski lodges placed strategically along ski routes down the mountain, include white stone ground floors of houses and then dark, wooden planks crisscrossed the last half above the white stone. Entrances were usually not accessible, each doorway was elevated in preparation for the inevitable snow and contained a few steps to enter. But in the doorways of many were these beautiful, big fluffy bear dogs watching the people pass by. In one house, however, was the dog known throughout the town as being the largest, gentlest creature in the region. He was a St. Bernard as well and without knowing his weight, I’d guess he was at least three times as large as I was. I had not been to the Service Dog Project Crazy Acres yet, so I didn’t know that it could truly get better, but at that moment I learned how a big hearted, big dog could make my own heart sing.

 

A St. Bernard mountain dog of Cervino, Italy

A St. Bernard mountain dog of Cervino, Italy

And so it was the two weeks I spent with Ethel at the farm. Her presence, her personality and her big eyes carved a permanent spot in my heart as large as her own heart patch on her shoulder.

 

The final piece for me, however, was when I understood what it meant for me to regain my freedom and my independence from her help. Before Ethel, I was capable of being fairly independent of any caregiving. It may take me multiple trips to get all the groceries I need, but I could do it. I had learned the hard way about all the warning signs for medical concerns and had built a strong preventive care routine. But my independence was only possible when I had a calm, sound mind. My Achilles heel is anxiety, a crippling anxiety I’d struggled with before I became a paraplegic and that would overwhelm me whenever I was separated from my husband. The Army has given us plenty of months apart after I became a paraplegic and in these circumstances, it would exhaust me to have a handle on my anxiety long enough for me to care for myself. My battle turned into a metaphor of trying to hold three screaming, wriggling babies; my anxiety, my medical needs and whatever was demanded of me from life and school.

 

So the first weekend we were alone on the farm, Dusty and I wanted to do an experiment. I would go shopping, alone, with Ethel in the mall while Dusty would be somewhere in another store. He’d be close enough to come running if anything was needed but it would give me a chance to see what it was like handling her, and myself, without the extra set of eyes and hands. So Ethel and I said goodbye to Dusty at the entrance to the Danvers mall and she and I headed to Old Navy, the mission being to collect shirts and sweatshirts to be embroidered with the SDP logo to give to family. People watched us as we strolled to the store, but my eyes were on Ethel. I wouldn’t know if anyone said anything, I never stopped talking to Ethel. “Good pace,” I happily hummed to her. “Stay with me, sweet girl, good pace, good pace.” There were only a few times I needed to tell her to “Easy! (slow down)” or “Leave it! (stop sniffing around and pay attention!)” before we were at the store.

 

For anyone unfamiliar with Old Navy, there’s always a plastic dog mannequin standing at the entrance with his plastic, mannequin owners. Animals (and people) standing perfectly still, I learned, is a reason to be alarmed for a dog. It usually means the animal is about to or could attack making the dog alert and defensive. That’s why there’s an eccentrically dressed mannequin who greets you at the gate of the Service Dog Project farm and several mannequin animals placed throughout the grounds. When we entered Old Navy, the mannequin family of four with their small dog gave us a frozen wave and Ethel tried to steer me in the other direction towards the cash registers. “Nope, we’re going left!”, I directed.

And we started to browse, her patient steps going the pace I wanted and giving me the chance to happily dream of wearing all the clothes.

Other shoppers began to approach us or comment when they went past. An older lady walked towards us and I felt my grip on Ethel stiffen and my head drop. Before I knew whether or not she was approaching me or the stacks of clothes behind me, I was already resenting her presence. I was already bracing myself to hear some of the terrible things people have said to me in the past (“You can’t possibly go shopping by yourself. You need some help. Here, let me get that for you, I can’t believe there’s no one helping you.”) and I mentally shielded myself when she opened her mouth. “Well aren’t you just the most precious service dog I’ve ever seen! Well, my stars isn’t he big.” She smiled at me, chuckled and walked away.

 

I was confused. It was like she didn’t even notice I was in a wheelchair. People ALWAYS notice I’m in a wheelchair and they make sure I know I’m in a wheelchair while they’re at it. Maybe this was just a fluke. Maybe.

 

But it kept happening. All throughout the store, no one noticed me since their eyes were only on Ethel. She took all their attention and all the comments (“What a great horse you have there! Such a beautiful dog. Love your pony!”) were geared towards her. I was invisible. I was unnoticed. I was safe. Ethel was doing more than bracing for me so I could reach that cute sweater on the top rack, she was protecting me. She was acting as a social barrier for me so I could finally feel … just like anyone else shopping. Not someone different.

 

I was physically independent before pairing with Ethel. But only as long as my heart and mind felt safe. And in a world of constant fear, pain and struggle, feeling safe is a cherished moment that I previously only knew with my husband’s presence. Until now. Until I learned that safety is holding onto the dog that is giving me my life back. That safe can be spelled E-t-h-e-l.14282_10153653649189018_5977566610086700791_n

 

Views from the top of the Matterhorn Mountain, Switzerland

In the Alps, there are many cable cars that take visitors and skiers to the top, to the lodges or just to ride the view. Unfortunately, there wasn’t a cable car in use when we visited the Matterhorn Mountain of the Swiss Alps and its’ other side, the Cervino Mountain of the Italian Alps. Dusty took the GoPro and the camera to the top, however, to bring the views back down to me. Read more about this adventure here!

Cervino, Italy and Matterhorn, Switzerland Mountain of the Alps in Pictures

What keeps us warm in Italy

We are lucky enough to have some friends stationed in other bases around Europe and for Thanksgiving, we met up with one couple and their flown in family in Italy. He works for the Outdoor Recreation Department of the military base and was leading a group of single soldiers to Cervino Mountain, the Italian side of the infamous Matterhorn Mountain. The hotel, having catered to American skiers before, served an Italian version of Thanksgiving dinner on Thanksgiving Day. We enjoyed a five course meal, sans any frustrating normal Thanksgiving family conversations, and enjoyed turkey (but mostly veal) and Italian apple pie (an apple flavored dessert cake served with different kinds of flan). Not only was this gesture delicious, but very gracious of the Italian hotel owners to try to accommodate some Americans who may be missing home.

Dusty and our friends spent the daylight hours skiing, both down from the top to Italy and then down to the Switzerland side. There wasn’t a working cable car to take me to the top or I’d have joined them, but Dusty dragged the GoPro and the camera to the top so that I could see the infamous Matterhorn view. See it here!

Matterhorn, Switzerland

Matterhorn, Switzerland

Matterhorn, Switzerland

Matterhorn, Switzerland

 

Upon his return from the mountain on the second night, we ventured outside the hotel/restaurant into the banks of snow to enjoy the rest of the town. We passed pizzarias, ristorantes, sci (ski) rentals and other quaint little hotels like our own. This was such a small, one street town that we quickly ran in to the other soldiers and families from our hotel at the different eateries along the way. We sampled wine, cheese and olives in true Italian fashion at one lodge bar and then found a small pizzaria for dinner.

Cervino, Italy

Cervino, Italy

We sat down next to a group of Italian men, some older, some younger and two kids, everyone still clad in their ski gear. Towards the end of dinner, we noticed one of the waitresses filling up what appeared to be a wooden bowl with a half dozen spouts on the side with steamed coffee. We watched as she approached the table of the Italian men with the bowl, put the bowl down and then surprisingly, lit the entire dish on fire! Blue flames danced on the entire bowl’s surface for a minute and then she replaced the lid of the bowl to snuff out the fire. A single flame shot out one of the spouts and she tapped it with a spoon, almost to scold the blue flicker. The Italian men had clapped and cheered during the scene and once the flames were out, one man raised the spouts of the bowl to his mouth and drank. The next man rotated the bowl to a new spout to drink and the next man followed suit. They saw us staring (oops) and in Italian, ushered us over to their table.

“You want to try?” One of the children translated for their fathers to us in English when they saw us stumbling over the few Italians words we knew.

Dusty thanked them and being the daring soul that he is, took the bowl to try. “What kind of drink is it?” I asked, unsuccessfully trying in Spanish to see if any of the words were similar enough to get the message across. They aren’t. Dusty drank and I could see he was fighting the urge to sputter. This was a strong drink. The men at the table all laughed and the closet one to us clapped Dusty on the back.

“For the ski, for the snow. It is coffee and liquor and oranges. It’s made with genepi (I later learned this is an Italian liquor made in the Alps). For the cold,” the child answered, gesturing to the window. Dusty opened the lid as he passed it to me and sure enough, there were orange peels floating on the surface.

I took the warm bowl in both hands, rotated spouts, said a quick prayer and took a sip. It was hot and strong and burned like no other, but the taste was so rich that it didn’t matter. It tasted like warmed rum with just a hint of coffee and orange but it was just delicious. We thanked them and tried to retreat back to our table, but that’s American thinking. When an Italian invites you to their table, not only are you there to share the food, you’re there to stay until the drinks are dry and the bar’s closed.

Cervino, Italy

Cervino, Italy

Several rounds of the drink later, we had learned that this was an Italian drink specific to the Cervino mountain region of the Alps. The Cervino/Matterhorn slice of the Alps has its own culture and this drink is only ever served or found on the Italian side of the mountain. By this time, I had also been shown dozens of pictures of some of the men’s grandchildren, wives, daughters, vacations to the coasts (for future reference, Italian men generally wear speedos, no matter their age) and the latest renovations of their homes in Rome. Dusty shared pictures of his hikes that former weekend in the Italian Dolomites and I brokenly spoke to them about seeing Pope Francis in Rome.

We went back out that night feeling quite warm amidst the flurries, but more from the welcoming embraces of the Italians who had befriended us than just the *cough* pretty powerful mountain drink.

Cervino, Italy

Cervino, Italy

*Illegally* driving the Walking Cities of Cinque Terre, Italy

The Walking Cities of Cinque Terre, Italy don’t allows cars to drive through the town, but it is possible to drive the cliffs and back roads from town to town… some of the best views for a paraplegic are from the seat of a car when it comes to off road adventures and these views were not too shabby in the least. See our pictures here!

 

Embracing Defeat in Cinque Terre, Italy

Coming home after a day of touring Cinque Terre, Italy, I felt sick and I knew it wasn’t from the amazing homemade lasagna from dinner. I felt sick because an entire day of inaccessibility and wheelchair related hardships left me… disabled. Defeated.  

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Cinque Terre Italy

 

There’s no part of Europe of what we’ve seen that is truly the same level of wheelchair accessibility as in the states, simply because there’s an unlimited amount of history to preserve and a limited amount of space to do it in Europe. So I shouldn’t have been surprised or troubled that this part of Italy was pretty ruthless for me, this wasn’t our first rodeo with inaccessibility. But coming back to our Airbnb with a bathroom too small to turn around, with a part of one pant leg wet from where my catheter leg bag had spilled and listening to Dusty and his friend Doug who’d come along laugh about the views from the hiking trails they’d climbed that day… all made me want to crawl in bed and declare defeat.

 

There’s a marked difference between being disabled and feeling disabled.

Vernazza, Italy

Vernazza, Italy

There are some experiences I’ll recall where it’s hard for me to remember whether or not I was in a wheelchair during that time, my limitations were so irrelevant. And then there are the times where I feel every inch of my disability in how unwelcome and isolating being a chair can bring. When everything is on steps, there’s no clear pathway in sight and every person who passes stares, the exposure I feel is almost violating. But when I feel all of that and it’s paired with some of the physical pains and bodily complications that traveling brings, the only word that can encapsulate the defeat I felt was that in that moment I just felt… disabled.

 

This is where Dusty walks a fine line between caretaker, spouse and simply a friend. He tries to address the inaccessibility of place by pushing me when I want it, even when that means getting a “wheelchair workout” by pushing me up steep hills until his calves burn. But in between panting breaths, he’ll try to encourage us into still enjoying the evening together and then in the midst of all that he’ll give me a sweaty kiss to let me know everything is going to be alright.

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Vernazza, Italy

 

 

On this day in questions, the three of us had tried to have dinner in the furthest southern Cinque Terre city of Riomaggorio. I had read many TripAdvisor warnings about how inaccessible the streets and hills of Cinque Terre were, but because we’re young and dumb we thought we’d give it a shot anyway. First problem we encountered was the trains of Italy have three large steps to enter or exit the cabins, no exceptions. So Dusty and Doug each grabbed one side of my chair and lifted me in and back out when we arrived. By itself, that’s inconvenient but not too bad. Standing at the platform of the station, we saw the only exit was through a tunnel underneath the tracks and this station didn’t have an elevator. This is a common problem when we travel, so we knew the ropes and Dusty carried me while Doug suffered with my chair.

 

Cinque Terre, Italy

Cinque Terre, Italy

Under the tracks and back up on the road, the path was dark but we could hear music and people down by the water. But the path led up. Straight, almost climbing-steep up. Dusty got behind me , grabbed my handlebars and ground his feet to start pushing. Up that hill, around the bend and then down just as steep of a hill. Then back up. Then back down. Doug and Dusty joked as Dusty panted, “So the number one thing I’ve learned about Italy is that it’s hilly,” Doug laughed. We paused at one of the only lit buildings we passed to ask where we could find an open restaurant and were directed to keep going down to the water. If we thought we had seen the steepest of these hills, we were proven wrong when we looked over the edge to the rest of the path leading down to the water. By this time Dusty’s shirt is soaked through and it’s a law of nature that if we continued down in elevation, it would only mean an even worse climb coming back up to get home.

 

The weight of how much trouble my chair was causing us to be able to simply eat tonight was wearing on me; this wasn’t fun anymore and I wanted to get back to our Airbnb home. We turned around and began the trek home. Luckily, we passed an open little restaurant nook and gratefully stopped to eat. The food was delicious, authentically homemade Italian with overflowing wine and sultry jazz in the background. I left with some heart lifted and we were halfway to the train station. But then something in my stomach turned and I began to cramp something awful. This wasn’t a direct result of the food, but a stomach complication related to my paraplegia that flares when I travel. I gripped my stomach and told Dusty that we needed to get home. The station was deserted and we soon learned why; there wouldn’t be another train for 30 minutes. At this point Dusty is getting nervous; I haven’t needed him to be the caregiver that he was at the beginning of my recovery in a while, but he can perform whatever’s needed in a pinch.

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Vernazza, Italy

 

This is where I’m learning how to ride this delicate balance of knowing how to take care of myself and not necessarily have to worry everyone else when something goes wrong. Essentially, I’m learning how to be independent with my health when it’s not a safety concern. And I knew this stomach problem was not a safety concern, just incredibly painful but I’d been through it before. What I didn’t want was so spend the 30 minutes waiting with a worried Dusty hovering over me and our confused friend not sure what his role would be. So I sent them on a quest to find gelato and I practiced my breathing to manage the pain.

 

The train eventually did come and while we had other wheelchair related setbacks (the elevators at the next station closed to the public at 10pm and while we could see they could still work, the doors were locked to us when we arrived at 10:05), we did at last get back. I was able to take care of my medical needs and get ready for bed while Dusty and Doug went walking to hunt out pizza and wine, but as I lay in bed I simply cried. Staying optimistic and positive in the face of continuous difficulties not only requires superhuman strength but an incredible amount of energy as well. And I was just plum run out.

 

It’s during those times I’m faced with questioning whether I’m really ok or not with my new life in a chair. In the light of day, I don’t see how questioning this reality has being fortuitous but that night I really did ask myself that question. And truly, I couldn’t come up with an answer. Am I okay with this? Well sure. And of course not. And emphatically yes. And knowing that it truly doesn’t matter whether or not I’m okay because it’s how I’m going to wake up tomorrow. It’s okay when I’m frustrated or even devastated that my life’s in a chair and it’s equally okay when I enjoy my life regardless of if I’m standing or sitting. What I am capable of doing is choosing. I choose to be happy and that night, I chose to fall asleep happy that I was in Italy. I’m not going to waste time seeing this world choosing to be unhappy that it’s not accessible.

The world is not accessible, but our minds are free to choose how to appreciate what the world has to offer instead.  

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Cinque Terre, Italy