Losing More than My Mother

Losing More Than A Mother But Maybe She Wheel Julia Rodes



A week ago marked the 10 year anniversary of losing my mother.


These past ten years of grief have shaped how I see relationships. I’ve fallen in love, made the lasting friendships that’ll stay with me, became a wife, a sister and an aunt. But in the first six years after she was gone, I also endured the worst experiences I know I’ll ever live to have. There wouldn’t be any waking up from experiences harder than assault, a traffic accident, a spinal cord injury, waking up to a paralyzed body. What I missed most in those moments was the ability to call my mom, have her take me into her arms and make it all better.


I’ve learned I grief much more than just not having my mom in my life; I also grief not having A mom in my life. Because when you lose a mother, you lose so much more than having that person. You also lose the security that a mother gives her child, the comfort that there is someone wiser and always available to help. When a daughter loses a mother, she loses the relationship between mothers and daughters AND she loses the security a mother provides her daughter. My mother surrounded, protected and loved, sometimes judgmentally or intrusively, but with well-meaning and adoring  intentions. I miss the person my mother was, but sometimes more than anything I miss knowing my mom would be there any time I needed her. And how I’ve needed her.

But Maybe She Wheel

I needed our mother-daughter relationship when I fell in love with a soldier and made the choice to be an Army wife. I needed the security my mother would’ve brought when I couldn’t pull pants over my paralyzed legs. I needed her smile when I embarked on mentoring other disabled people on traveling, a passion I inherited from her. I needed her wisdom in medicine to help me manage the chronic nerve pain. I needed her pride when I walked across the stage at my college graduation. I needed her for every milestone in my life and for the lives of my siblings and now her grandchildren. What losing her meant that she’ll never be there to see the adult she helped shape me to become. And I’ll never get to turn around and thank her.


In the Hindu religion, time is thought of differently. Hindu’s believe time is not linear like most of the Western world believes, where days and months march forward minute after minute. In Hinduism, time is cyclical and revolves through the four phases, or yugas, of Sat (or Krta), Treta, Dvapara and Kali that repeat themselves endlessly. Think the only period of awkward insecurity is when you’re a teenager? What if we revolved around a period of awkwardness in the circular time when we’re 15 and then revolved through time to again move through that phase at 24, 43, and 68 years old? What if I moved back through the childishly sweet phase of falling head over heels in love with Dusty when I’m 31 and 59 like I did when I was 17?

But Maybe She Wheel

If time is circular, then I will continue to move through phases where I have a mom and where I don’t. Her death is a permanent fact of my life, but that never meant my life would be absent of her presence. As I revolve around and around the circular timeline of my life, I’ll move through periods where her presence is so acute it’s as if she’s alive and then phases where her absence is like a widening void. It’s comforting to think that when I feel her presence, it may be because I’m revolving through a past time as a teenager or child when she was alive.


In the linear timeline of my life, my mother is gone and abruptly removed. But in the circular way of thinking, I both have a mother in one phase of a revolution and then do not in another phase. For fans of the Big Bang Theory, this is what I’d call my Schrödinger mother. In circular time, her presence will still be there at each milestone. Her absence will be felt but her presence will still be alive. I can have the relationship, but still have lost the realistic security. I can still look up and thank her.

But Maybe She Wheel

I am an overly fortunate person in that I’ve had multiple women step in and provide that missing security of a mother. Army wives all over the world have taken my husband and myself in to provide comfort and help during our crises, actions that I will not soon forget. Her fellow nurses were there when I fell in love and married my soldier, hosting bridal showers and hastily tying the back of my wedding gown so I could dance. The wives of Army chaplains were there when I awoke paralyzed, patiently explaining that everything would be okay while they fed and comforted Dusty. They were also there to smile with pride when I graduated college two years later. I have incredible, strong, and passionate women who have surrounded me and won’t be quick to let go.

But Maybe She Wheel


The cycles of grief have moved through me over the past 10 years and have subsided to echoing ripples in my day to day. She’ll always be painfully missed in my accomplishments, adventures and pitfalls and that’s when the waves will splash over my head. But I know now that she can be both present and absent, gone and alive, in the circular spinning of my life. I’ll be glad the next time I move through the phase where I can feel her presence again.

But Maybe She Wheel


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My Mean Mom



When I was growing up, my mom was mean.

She punished myself and my three siblings when we made messes and didn’t clean them up.

I had to have a good excuse for not getting straight A’s.

We had a whole list of chores we had to do if we wanted allowance. And more chores were added if we were caught fighting with each other.

She made us go to church each Sunday morning and youth group on Sunday nights. And even during our summer vacation.

If we ever said we were bored at home, she’d make us clean the house or give us a list of books we had to read.

She was so mean taught me how important it is to give back by making us volunteer with her each Christmas by ringing bells for Salvation Army, even though all my friends could see me.

If we ever went camping, she forced us to know how to light a fire ourselves, set up a tent and make dinner.

We never got to get exactly what we wanted in the cereal aisle.

My mom was so mean she’d embarrass me all the time by giving me hugs and kisses in front of the whole school during awards nights, cross country meets, prom dinners or any of the million events she found a way to be present for after working all night.

I never got the makeup or jewelry I wanted for Christmas but instead got a microscope that made me fall in love with science. Lame.

She never let me pout when things didn’t go my way but made me learn how to roll with the punches of life.

All four of us had to have a job in high school if we wanted to share our own cars in high school. And those cars were bought USED. Gross.

My mom was so mean she made me believe in God by how fervently she prayed for all of us.

My mom was so mean she didn’t approve of any of my boyfriends except the boy I’m married to now.


My mom was so good at being so mean that God took her back to be the angel that watches me grow into the confident, strong woman that she was and I never would have been if she hadn’t been so mean.


Happy Mother’s Day. Kiss your mom today for being so mean.

But Maybe She Wheel in Cinque Terre

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Rome, Italy and Vatican City


“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.



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.

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Finding Ethel: Part 2, Day 4

Continuation from Part 2 Day 1 in the Finding Ethel series
Continuation from Part 2 Day 1 in the Finding Ethel series


The first week of training with Ethel at the Service Dog Project was all about bonding and trust. I was essentially “locked in” the guest house with her for the first 24 hours, without Dusty, in order to start the bonding process. The next few days were a blur of training myself, in between day long training outings, to adjust to her feeding schedule, learning her cues to go potty and cleaning up accidents from missing her cues and getting as much physical and verbal contact with her as possible. I awoke in the middle of night several nights in a row to Dusty coming back to bed and shaking my shoulder because he had wet feet from stepping in accident puddles. We were all learning and adjusting, quickly familiarizing myself with the notion that her big eyes flashing at the door meant a need to go out. In between the morning and afternoon outings to the grocery stores, malls and hospitals, our trainers and the three of us would break for lunch in the guest house. I’d come home at 4pm with Ethel and she’d eat, she’d go out and then I’d just crash. It was wonderfully, beautifully exhausting.


Training on the train out of Beverly, MA
Training on the train out of Beverly, MA

I can’t explain how privileged I felt the first time I told Ethel to “get dressed” and put her harness on, the words “Service Dog” clearly outlined on her shoulders. There are a few silver linings in the storm clouds of becoming a paraplegic. I always appreciate skipping the security line at the airport, the discounted tickets to shows and of course the handicapped parking spaces. But walking through the mall with her, my idea of disability silver linings was blown away.


Ethel and I continued to bond through the next few days by me forcing her to tolerate my baby talk and constant loving. There were plenty of times where she looked up me saying “Seriously, though. Chill” with her big eyes. But I couldn’t chill. I was so sure the moment I stopped petting her, she’d go to her trainer Meg and beg to be paired with someone else.


What I didn’t know at the time was that her trainers Meg and Kati had already tried to pair her with other people and they had all failed. By the time I came to the farm, Ethel was almost two years old and older than most of her cousin Danes when they’d been paired for their forever homes. Ethel is a strong, muscular girl and can really throw her weight into walks. Kati and Meg told me how much trouble they had getting her to walk with anyone without her pulling on the leash. They feared they’d have to take her out the program of becoming a service dog because she’d be unsafe with all her tugging. Then it clicked in their minds to try her out with a wheelchair, the thought being “let her tug away!”. A few weeks later I contacted the Service Dog Project to see if they’d have a dog for me. Maybe, just maybe she pulled on all the leashes because she knew it wasn’t her person on the other end. Maybe she was just waiting for me.



Training with Ethel in Danvers, Massachusetts
Training with Ethel in Danvers, Massachusetts


As I’ve written before, I’m the former Miss Wheelchair South Carolina 2011-2012 and have been in the public eye since the onset of my injury. Articles were written about the support we received from the Army community when we returned from the hospital to a brand new home on post, already unpacked and set up for us. I ran for the Miss Wheelchair South Carolina crown a few weeks before returning home from the hospital, while I was still day patient in therapy. I was treated at Shepherd Hospital in Atlanta, an incredible facility and community for spinal cord injuries and traumatic brain injuries. The only reason I was able to be as independent as a was after the accident was because of the conquer-all attitude I inherited at Shepherd. The majority of my fellow patients were around my age, young adults and young professionals. But that summer I was the only patient to return to college, the intimidation of accepting a new life as a paraplegic too daunting for many. That broke my heart and I wanted a platform to reach out to other disabled twenty-somethings. So I ran and won the crown of Miss Wheelchair South Carolina. I toured the southeast United States talking to peer support groups of the Spinal Cord Injury Association and students at high schools, colleges and graduate schools. I met with new injury victims one-on-one and corresponded with many nationwide. I love public speaking and felt comfortable in the public eye.


Touring as Miss Wheelchair South Carolina 2011-2012
Touring as Miss Wheelchair South Carolina 2011-2012

Suffice to say I can handle the stares, the rudeness and the people who park in my handicapped spot. But I have one Kryptonite encounter that will render me incapacitated and wanting to isolate from the world. The pitying glance, the empathetic clucking, the I-don’t-know-how-manage-such-a-terrible-affliction comments, these are the encounters that stop me. This was true before my accident, in high school after my mom passed away.


There’s the trauma of going to high school, then there’s the trauma of going to high school after a parent has died and everyone knows. It was similar for my friends when some of our best friends died, as well. You walk down the halls as this exhibit in a zoo, other kids watching you to see if you’ll burst into tears at any moment. And like a zoo, they talk as you walk past as if you have that thick wall of plexi-glass and can’t hear them.


“Look, it’s her,” a pimpled freshman would say. “Yeah, she’s the one who’s mom died of like cancer of something,” the Nicki Minaj-makeuped friend would reply. “I know how she feels. My neighbor’s aunt’s boyfriend had a tumor once. Do you think she’s, like, totally going to cry or something?” “She’s like, so strong. I’m going to like take an Instagram of her and hashtag it #beatcancer.” “You’re like, such a good person.”




And unfortunately, these exchanges returned even after I escaped my hometown. I was in an accident and when I became a paraplegic I began to hear:

An acquaintance I just met at dinner- “Oh my gosh, you poor thing! I know how you feel, I broke my leg once and spent like , an entire week in a wheelchair.

The cashier checking me out at the grocery store- “So like, what happened? It must have been a pretty awful accident or something. Did anyone die?”

The mom educating her child- “And that’s why we wear seat belts!”

The man opening the door for me at the gym- “Look at you in your little chair! Such a big girl doing things all by yourself!”

Another man at the gym- “Hey, how about a ride?”

A woman at the university café – “You’re not contagious, are you?” Really? I just… I just can’t even.


The North Sea off the coast of Aberdeen, Scotland  June 2014
The North Sea off the coast of Aberdeen, Scotland June 2014


So by the time I was learning how to go out with Ethel, I was over trying to cater to the public. Yes, if you start cooing at my dog I’m going to ignore you. If we’re taking too long, go around us. No, I don’t want to start a conversation and learn about all the illnesses in your family that aren’t even close to spinal cord injuries but you think are related some way. I don’t give a Florida Fourth of July if my disability makes you uncomfortable.


One of our first big outings while Ethel and I were training was going to a local Stop and Shop grocery store for me to learn how to navigate her through a cacophony of interesting and delicious smells. Dusty and I had a list and I was carrying a shopping basket on my lap, while Ethel and I and two trainers began making our way through the produce section. Like a true professional, Ethel paid no attention to any of the food or the carts squeaking around us. She continued to calmly mosey down the aisle, her head swinging back to check on me every thirty seconds. I, on the other hand, was having trouble keeping all my directions straight. “Woah!” I would say, giving the command to stop, but I’d keep going because really I was just needing her to slow down. “We’re going left!” I’d command and then turn right. “Eh!” I’d grunt, without any interpretable meaning. Ethel looked up at me almost pleading for me to get my act together. And then, flustered and anxious, I made the mistake of looking around at the other shoppers surrounding us. I saw first the astonishment on their faces at this giant dog in their grocery store and then, as I felt stomach drop, the pinched eyebrows of pity as they looked at me.


Maybe my already stressed mind imagined it. Or maybe it was just one shopper who looked at me like that but my mind copied their expression on every other shopper’s face. I felt my heart quicken and a sob caught in the back of my throat.


“I need a break,” I managed to say. Dusty, well versed in my panicked look by now, put his hand on my back and gave my shoulder a reassuring squeeze. I put Ethel in a “Down (lay down) and Stay” position, which she immediately did, and I closed my eyes from the store and the shoppers. I reached my hand down and started stroking Ethel’s back as she lay on the floor.


With my eyes still closed, I felt her turn her body around and suddenly her nose was nudging under my hand. I opened my eyes to her watching me. She calmly looked up at me, her blue eyes trusting. I slowed my breathing down and stroked her long ears as she closed her eyes in enjoyment. I wasn’t doing any of this alone anymore. She didn’t care about the pitying glances we were receiving. She only saw me. I exhaled slowly.


From now one, I could try to only see her too.

Training in Danvers, Massachusetts March 2015
Training in Danvers, Massachusetts March 2015

PicMonkey Collage3

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Finding my Mother's Hug in Sevilla

Seville, Spain

I’m named after my mom’s best friend from her twenties, Julianne. They lived in Palo Alto, California together, where my mom worked as a nurse and Julianne worked at a university. Julianne befriended my mom, who was in a bad relationship and needed a friend. Julianne helped my mom regain her strength and her faith, giving her the courage she needed to end the relationship and move out on her own. My mom moved into one half of a duplex and together they prayed that someone nice would move in next door. The next person to move in was my dad.

My parents moved from California to be near to my mom’s parents in Indiana, where I grew up, and Julianne went on from that university in California to working for the Universidad de Sevilla, Spain. I grew up hearing stories of Julianne and repeating the foreign word, Se-vee-ya, to myself. As soon as I was old enough to understand where Spain was, I knew that was where I was meant to travel.

Traveling was a tradition in my family growing up, but not the fancy way of flying in airplanes and taking taxis. Nope, we were all piled into our six passenger minivan, made seat forts with our Ninja Turtle sleeping bags and spent the miles fighting over who got to play with the Bop-it next. I loved every minute of it. From my suspiciously sticky back seat window, I saw the plains of the Midwest, held my breath as we climbed the Rocky mountains and fidgeted to get out and feel the sand of Gulf of Mexico and the Atlantic and Pacific oceans. The four of us kids slept, ate ungodly amounts of potato chips and (believe it or not, read books and quizzed each other with Brain Quest flashcards. My mom made a fight for education in every minute of our free time) and counted the hours we’d been on the road. No amount of highway mileage was too far for my mom to want us to see a certain destination, so driving 22 hours was not an unusual amount. By the time I was 16, I had seen or driven through 48 states and down the coast of Mexico.

We knew she was terminal in her fight with cancer by my 17th birthday. My parents insisted that we celebrate; I wanted nothing less than to remember it was my birthday. I knew that age 17 would always be the age that I would have to say, “I was 17 when my mom died”. I wanted with all my heart to stay 16, stay the same age that I was when my mom was alive, stay the same age that I was before she told us she had cancer. Once I turned 17, she was going to die. Once I turned 17, I would have to start my life of living without her.

I was lost in those months once she was gone, but I hid my grief and pain as much as I could. People surrounded my siblings and I, consoling and loving us in ways so innumerable that we still can’t count them all. Food always found its’ way to our fridge for months, whether or not anyone was shopping. Friends were always even less than a phone call away. I will forever have an undying gratitude for the magnitude of love I felt during those months and years and even present day. But I am my mother’s daughter. And as such, the attention and care became stifling to my confused, lost heart. At school, I went through the halls feeling like I was an exhibit at a zoo. “Watch, it’s her, she lost her mom,” “Wait, was that a cough or a sob? Is she going to start crying now? Is this grieving?” My guidance counselors gave me these long looks after they embraced me, their eyes almost saying “ok, ready, set, grieve!”

I needed to get out. I needed to follow my mom’s lessons about the world; there is always something beautiful to see at the end of the road. I needed to see that the world is more than the pain that I was feeling, more than the overwhelming tides of exhaustion and hopelessness that consumed me. I connected with the local university and a local church; they were on their way to Tegulcigalpa, Honduras for mission and I knew I had to go with them.

I received a tremendous amount of support to pay for my ticket and I left to regain my spirit. And through travel, I did. I returned the next year and received the same affirmation of the goodness of the world that I desperately needed the year before. I began dating a guy my mom had always liked and our first dating adventure was to drive to New York from Indiana. We drove for hours and drank coke on Times Square as the New Year’s ball dropped and confetti rained down on us.

Seville, Spain

Fast forward 7 years and here I am, once again driving in a car on a road trip to see the world. I have that boy by my side once again, but now I have a ring he gave me on my left hand. We’re roadtripping for 9 days from our home in Germany to the Atlantic coast of Portugal and back, hugging the southern coast of Spain, the south of France and northern Italy along the way. We drove into Sevilla on Day 4, Christmas Eve day, after climbing the cliffs of Portugal and munching the tapas of Lisbon. Sevilla is a city of ambiance, complete aesthetic delight but was built on ideas from adventure. Queen Isabella listened to Christopher Columbus talk about “finding Asia” on his quest and she knew this was the beginning of another era of the “New World”. She expanded the royal palace, Alcazar, for a whole section dedicated to quests like Columbus’s. But painted on nearly every building’s walls is the true face of Sevilla; depicted as crying, the concerned but proud Mother Virgin Mary looks over Sevilla to bless every voyage, every journey, every traveler. Sevilla holds a statue of the Virgin Mary, south of the city center, made famous by her tears leaking from her stone face. The tears are now studded with crystal, but the Virgin Mary of Sevilla still blesses her city to this day.

Seville, Spain

If there was ever a harmony between two opposing religions, it exists in the beauty of Sevilla. Beautiful Moorish buildlings, white walls with tiles adorning the doorways and red tiled roofs, pack the streets and black bulls were found grafitted on severfal buldings here or there. Bull-fighting is an ancient sport of Spain, but Sevilla is the home of bull-fighting and houses the championships for the matadors every year. Green vines entandgle the pillared terraces where people stop to eat and the narrow streets are lined with bright orange trees. (Not for eating, however. They’re too bitter, but they’re instead used for fragrences, cleaning agents or medicine). The Islamic culture lives and breathes in the pointed oval windows and sacred geometrical stone carvings lining the doorways, but right next door is the largest Gothic Catholic cathedral in Europe. Sevilla’s history is one of bloodshed as these two religions, monarchies and cultures clashed, but present day Sevilla is a representation of the peace and harmony that since grew.

And I saw the city as the magical, almost mythical city I’d dreamed of for a decade. This was the Sevilla of my mother’s youth, the city she talked of taking me to before I knew of Spain. I was there for her, to fulfill her dream of taking me to see this piece of the world. I went through the city looking for pieces of my mom, looking for hints as to why she had wanted to come here with me. I paused at every sight, trying to take as many pictures of the beauty as I could, trying to navigate the small doorways and steps, opening my eyes wide as if I could take in the entire city if I just tried hard enough. I looked in doorways and small alleyways, thinking that I would see a glimpse of some art or scene that would remind me of her. It was a tremendous, exhausting day. I maxed the memory on my camera, dropped my husband’s cell phone in the looking pond of the Alacazar and then managed to fight of panic attacks for losing my husband’s cell phone in the looking pond of the Alcazar. It was quite a day.

But no matter how hard I looked, I couldn’t find her. I didn’t see traces of the proud, smiling woman with ready hugs and sharp, inappropriate wit. I looked in the faces of the women we passed; I searched in the faces of the robust Spanish cook in a tiny café who laughed at her own broken English and smiled proudly at my painful attempts to order breakfast, the caring Alcazar guard who informed me in her own unhurried way that there was no way to recover my husband’s cell phone but then laughed and gave me a long, sympathetic hug. I looked in the uplifted, lit face of the woman praying in the infamous Seville Cathedral, her face turned up to the figure of Jesus on the cross and her hands turned up towards the heavens.

But I didn’t find her. I couldn’t see her in any of these women, as unique and beautiful as they were.

Seville, Spain

As we left the Alcazar in search of tapas, I felt defeated. I’d been waiting my whole adolescence and adulthood to come to Seville, to feel the connection with this magical place I’d dreamed of, to find the parts of my mother when she was young that I’d never known. Did I fail? What if I couldn’t find my mother here? Was I letting her down?

In the swarm of tourists circling the Alcazar compound, we passed a garden with a family looking at a beautiful, intricate fountain surrounded by the orange trees that line the streets of Seville. The young boys of the family were starting to walk off, bored now that they weren’t allowed to throw any more oranges at each other and then the dad too left, chasing after the boys. The mom was hurriedly gathering the backpacks and water all tourist families are burdened by, but the little girl wouldn’t move. She was encapsulated by the fountain and the moving water. Her small hand was moving leaves on the water surface and when her mother took her other hand to lead her towards the boys, she jerked it back and began to cry. She didn’t want to go, she wanted to see more.

Seville, Spain

In a cliché moment of traveling self-realization/epiphany, I got it. I got why my mom wanted to take me to Seville and why I was meant to be here.

I wasn’t supposed to find my mom In Seville. Her dream of taking me to Sevilla was her dream of having a daughter that would have the opportunity to see the world and the curiosity to explore its’ mysteries. She wanted for me to have the spirit of that little girl, to want and desire to see more, experience more. I was in Sevilla to find myself, find the piece in me that is still her daughter, still learning and growing and connecting with the woman who will never stop loving me, even in death.

At that moment I felt my mother’s embrace, the hug that I will always remember in my heart and be able to conjure up the feeling for the rest of my life. Her arms go around and cross behind my back and she squishes my head to her shoulder while her own head rests on top of mine. Maybe it was the Spanish breeze, maybe the sweet wine and the salty olives, but I felt the reassurance, comfort and squeezing love that someone can only get from their mother’s embrace.

I finally went to Seville. And there, inside myself I felt my mother’s hug squeeze my heart and her voice whisper in my ear, “Well done, my daughter. You made it.”

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