Finding Ethel: Part 3, Sweaty Freedom

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There’s an argument runners will have over the fierceness of their love for the sport. Can you call yourself a runner after the first personal record at a race or when you want to get your long run in so bad that you weather rain, snow or heat? Every step of freedom, the feeling of conquering, the rush from achieving, makes the sport move quickly from a love to an addiction. I drank deeply the Gatorade of loving to run after watching my sister compete in high school cross country. I tried out for the middle school team soon after and a year later, we raced together (and against each other) for our high school. Every sweat soaked, vomit inducing mile of our 30+ mile weeks half the year made me happier than I knew high school could be.

 

I’m still close friends with a few of my teammates today. There’s nothing more bonding for a group of athletic girls than to lose yourself to your sport time and time again and be pulled forward by the teammates by your side. Every summer we had a week of intense cross country training in the northern Indiana Dunes on the beaches of Lake Michigan, called “Dunes Camp” by both the girls and boys team. We’d bring tents and bug spray and spent a week running up and down the sand dunes and boogie boarding in the water, only to stay up talking all night in our shared tents. I was never more sand crusted and mud splattered, but I was also never more sure of my love for running than during those weeks at camp.

 

To my coach’s frustration, I wasn’t competitive and I was told often that I had the potential to be good if I just applied myself. I didn’t care; I wanted more the memories of team dinner nights followed by the team cheering at the Friday night football game together than I wanted trophies.

 

When high school started, I was in a big hurry to graduate. I tolerated all the drama, all the gossip and all the mood swings, but I didn’t for a second buy into the small-town-Midwest creed that high school is the best time of your life. “Yikes, I hope not,” I’d think whenever someone mentioned they needed a certain dress for prom because these are the best days we’ll ever know. I was also part of a group of friends that already knew life was shorter than our invincible spirits told us they were.

 

The majority of our middle school began attempts at being an adult much too young. I learned the smell and effects of marijuana before turning 13, which was considerably older than most of the people I knew. The acrid smell of vodka and vomit would seep from the bathrooms of middle school dances. I learned how to sneak out of houses during sleepovers to meet up with boys and swagger down streets like we had outsmarted the world. We drank our newfound independence deeply but hadn’t grown the tolerance needed to stomach it.

 

One of our own died of an overdose before middle school ended. The cement under highway passes were strewn with graffiti tribute to our friend and tender skin of both girls and boys in the school were cut with his initials. We moved like zombies through school, the viewing, the wake, not fully understanding the implications in own life. The overwhelming fact that one of our own was gone was all we could handle. There was no sobering realization of our own fragility, but in fact the opposite. We took to the summer and then to high school this fierce dedication to avenge the death of our friend by exploring deeper, partying harder and stretching our limits to find any semblance of meaning.

 

Of course, the ending of that story is heartbreakingly predictable and equally horrible. And so horribly predictable. But that’s a story for another time.

 

As a teenager, I split my time between being who everyone wanted to me. That summer before high school I learned how to be a social chameleon, fitting in with any crowd but belonging to none. I was who I needed to be in order to gain the acceptance every high school student craves. I spent the week and weeknights running my hardest at cross country practice, thinking of and executing girls team pranks on the boys and learning how to take a washcloth sink bath so you don’t stink.

 

But on the weekends that summer and for all weekends later, I stayed out for late nights in a gray haze of smoke and cruising through town with the windows rolled down. The basses of our cars vibrated our headrests and knives made quick work of soda cans to produce a bong. We laughed at the world and scoffed at the adults who tried to contain our wildness. The summer night air was scented with the intoxicating rebellion of youth, but we all denied the stereotypes of teenagers. There’s nothing that will make an adolescent angrier than dismissing their behavior as teenage angst. We thought we were mature for our age, advanced for our generation and given the duty to live as hard and as freely as we possibly could.

 

But in the stale, cramped locker room of cross country, I was surrounded by girls who understood instead that being the best meant working the hardest and listening to the advice of our coach. We could roll our eyes at her determination to convince us that winners were never the ones to drink on the weekends, but in our hearts we knew she was right. And it only took one race where we came out in front of the person we’d been chasing for two mile, finished 15 seconds faster than our previous personal record or even beat the time of the last person on varsity, ensuring your place in the top seven and a letter for the next race to convince us that no rush from a party could beat the high of winning. There’s no greater example of hard work and dedication paying off than having a crowd cheering you on as you come in for a sweat soaked, blood pumping victory.

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I confessed to Dusty one night during my first year as a paraplegic that I felt like something was missing. At the beginning, during the crashing waves of realization and grief that the rest of live will be in a wheelchair, almost every part of daily life felt like it was suddenly gone. Knowing how to talk on the phone while simultaneously putting on pants was suddenly gone from my skills set. Being able to into a pot on the stove to check if the water’s boiling was simply not going to happen. But during that first year, pieces of familiarity began to return and joined together to form a new picture of daily life. New methods of changing clothes were developed so I could once again multitask because I overslept like usual. Changes in cooking were made and my abysmal culinary skills were restored to a “possibly-edible” state. But still, something in my heart was missing.

 

It was running. I missed running, the freedom that a single pair of sneakers can bring and not much more. The frenzied excitement of a road race and the community of fellow crazies were simply gone from my life. After I confessed this loss to Dusty at our dining room table, I looked out the window to the street of our subdivision. We were living in upstate New York at the time, on the Army base, and snow was piled high on either side on the sidewalk. It was early but starting to get dark outside, one of the signature conditions of living in the north. It seemed perfect for a crisp, long run. I remembered what it felt like to start jogging with goosebumps running up and down my legs because of the cold, seeing my white breath from underneath my hat and (burka). But by the end of the run, sprinting back home, my back would be sweatsoaked and my cheeks burning with heat. But no more, I thought.

 

Dusty wasn’t having any of my wallowing. He allowed me 15 seconds of self-pity before he had me watch clip upon clips of paraplegics racing in hand cycles and racing wheelchairs, speeding through off road trails and whizzing past runners in road races. I knew about accessible sports and had been introduced to both hand cycles and racing wheelchairs at Shepherd Hospital in Atlanta. But I had held back from jumping into an adaptive sport because I wanted to still believe that one day I wouldn’t need the adaptations. Denial is a poisonous drink that only gets tastier the more you sip. It was time to try something new.

 

Before we left New York for Germany, Dusty and I both spent hours researching where and how to buy a hand cycle. We learned how popular hand cycles are in Europe, how widely used and accepted the cyclists are in road races and how many hundreds of yearly races have hand cycle divisions. I was hooked and within one month of moving to Germany, I purchased my first hand cycle used from a professional cyclist in Munich. Watch out, world.. I’m back.

 

Or so I thought. Until I actually took my bike out for a test drive with Dusty the first time. It was absolutely terrifying; the ride is so low that the headlights of oncoming traffic are actually taller. How was I going to steer this super long, super heavy bike away from any car if that car can’t even see me in the first place? Dusty rode in front of me or to the side, patiently trying to teach me how to change the gears and watching out for traffic. (**Note: A hand cycle is the adaptive equivalent to a road bike. It’s got anywhere from 10 to 30 gears, front disk brakes and three wheels with the main wheel in front. A racing wheelchair is a simpler chair and is closer associated to running. Which, at the time, I didn’t know and didn’t have access to one.) It was a difficult skill to learn how to steer, change gears and stay alert at the same time, but the more harder challenge was how dispirited I became. This wasn’t as free and simple as simply putting on sneakers and heading out the door for a run. Was I ever going to feel that free again?

 

A few months and the end of winter later, I was beginning to feel comfortable going on a ride by myself. Just a few blocks from our apartment was a connection to an old gravel road named “Tank Trail” from its’ previous purpose of being the path tanks would drive 15k between US Army bases in this part of Germany. No cars drove on Tank Trail and it was a safe, wooded trail for me to find my independence and hopefully freedom with my bike.

 

 

A mixture of cobblestones and gravel crunched under my tires and vibrated my small headrest as I bounced along the trail. My eye line was halfway up Dusty’s back tire in front of me and I tilted my head to try to see around him. Suddenly, a very loud pop sounded from the front of my bike and I felt the front tire jump from my handles. “Ahh!” I yelled, true to my very tense and easily startled nature. I downshifted and eased my bike off the path, feeling the ground crunch even harder under my front tire and hearing the metal rim scratch against the gravel rocks with every turn. I transferred out of the seat to the ground so I could examine the front tire. I couldn’t see a break, the tube inside was fully deflated. I didn’t have a tire kit with me; I reached for my phone to call Dusty.

 

“First popped tire, huh?” Dusty jumped out of the front seat of the car that pulled up. I didn’t recognize the driver, Dusty introduced him as another soldier in the unit who had been driving by and offered to help out. “That’s all that was?” I asked incredulously, having been sure we’d just run over an uncovered WWII land mine or something. It’s apparent now that, having never been a cyclist prior to my accident, I knew absolutely nothing in the way of bicycles. “Yeah, see, here’s the break. Ok, well, I’ll teach you how to do this because you’ll need to know when you’re out for a run by yourself.” By myself? Running didn’t have popped tires as a part of the sport. There will be popped tires to think about whenever I go for a run from now on?

 

I watched Dusty change the flat, demoralized. I missed running. I missed pulling on a pair of sneakers and heading out the door. I missed being able to climb hills of beaten trails and jump across streams. The tires, the helmet and gloves, the extra inner tube kit.. These were the chains keeping me on the ground instead of dancing through the air in a runner’s high.

 

The first time I took Ethel to the track with me, wagging her tail and wearing her purple Service Dog vest, I was nervous and a little apprehensive. So far, whenever I’d go for a ride, Ethel would be content in a “down, stay” position on her bed with a Kong full of peanut butter. But recently I’d gotten the opportunity to train for races in St. Louis on a track and Ethel would be accompanying me, so she needed to learn how to stay in a down position and watch me zoom around the track. Dusty helped me transfer into my hand cycle and Ethel stood by me, ready to work. I held the end of her rope leash and pushed the arms of the hand cycle to inch forward, telling Ethel to take a step. She did. I kept moving forward and together we began to walk to the track.

 

Dusty sat with Ethel by the side of the track after I’d gotten her in a “down,stay” and had begun to ride. She was corrected by Dusty a few times, wanting to stand to watch me go around the curve and into the straightaway on the other side. When I came around the bend towards her, she started to bark. I kept going past her and I heard the bark turn into a whine. I felt my heart breaking under my shirt, I couldn’t bear to hear that sound. But her trainer Kati had told me to ignore behavior like this, that she had to learn to sit and watch me. So I kept going and biked my workout.

 

I returned to Ethel, who gave a short bark and wagged tail. I took off her lease and asked her to “walk on” with me to the track and we began to walk around. The corners of Ethel’s mouth were pushed into a smile and I began to roll a little faster. Her tail wagged harder. I started to ride faster, a pace I’d begin a ride at, and she transitioned from trotting next to me to doing what I can only describe as a happy gallop.

Buh-dong, Buh-dong, Buh-dong, she galloped beside me with her tongue flopped out the side of her mouth. The realization of her happiness with being able to freely run made my eyes widen in surprise. This was the freedom I was missing. Ethel’s pure joy in feeling the wind push back her ears was the same bliss I had loved so dearly in running. We weren’t moving very fast, yet Ethel was elated to feel the track under her paws and keep up with me. I watched her purple Service Dog vest bounce along with her stride and the straps pressing around her middle. She was burdened with gear, like me, but she didn’t seem to notice it at all. Her joy in just getting the chance to run was stronger than any attention to the vest and straps she wore. Maybe that freedom I missed from being able to run wasn’t out of reach after all. The chance to speed down a hill, to feel the wind and sweat from the sun, is all I should need to feel that freedom once again. I watched Ethel slow down her gallop to happily trot beside me as we ended our run. She was free. She was happy. Maybe I could be too.

 

Moving to Missouri, I was introduced to an organization dedicated to providing athletic challenges to people with disabilities called Disabled Athletes Sports Association (DASA) in St. Louis. The team is made of people so motivated and positive, making me feel immediately empowered in our first interaction. I joined the triathlon team and swam the first portion of my very first triathlon for my team this past weekend in New Town, Missouri. The intensely muscled and brightly suited community of triathloners around me laughed, yelled, breathed deep and sweated their love for the sport, for the challenge and for the freedom. And hearing the humming buzz of freedom in my ears for the first time, I jumped in the lake for the start of the race and joined them.wpid-img_20150712_110950.jpg wpid-img_20150712_111438.jpg wpid-img_20150712_110950.jpg wpid-img_20150712_111259.jpg wpid-img_20150712_123119.jpg wpid-img_20150712_105309.jpg

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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:

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Finding Ethel: Part 3, What I Didn't Know

But Maybe She Wheel: Finding Ethel

Untitled4It seems like most of my adult life has been a series of learning that I know.. well, really absolutely nothing. What? You mean insurance won’t take my word that I wasn’t truly speeding? I didn’t know that. You have to actually pay the tuition not covered by a loan? I didn’t know that. Sometimes you’ll owe taxes at the end of the year and you won’t get a refund check? I wish I didn’t know that.

 

When I became a paraplegic, suddenly the whole world was a minefield of hidden I-don’t-know situations. Is pain right there okay? I don’t know. Is there a way for me to go rock climbing? I don’t know. (Spoiler- there most definitely is and it’s awesome). Is there an easier way for me to carry all these medical supplies every day? I don’t know. Is it always going to be this hard? I just don’t know.

 

When we tooled around Europe, the list of what we didn’t know became much, much longer. No one believes in 24 hour gas stations? I didn’t know. Landlords don’t have copies of your key when you lock yourself out? I didn’t know that. You’ll get fined for running the lawn mower on a holiday? Well, now I know that. Our last group dinner we had with our friends in Germany, we compiled a list of these things that we didn’t know and quickly, painfully learned about living in Europe.

  • Real men drink red wine. Unless you’re in Scotland, where wine means whiskey.
  • Toilets only have 1/3 of the water in their bowl than the toilets in the states, so every public toilet has a shared toilet bowl scrubber. Peeing suddenly becomes pretty intimate.
  • To flush these toilets, you play a game of “Where’s My Handle?” to find the button, lever or automatic sensor whose location changes depending on country. German toilets do not have handles, but some in Portugal do. France loves the automatic sensors and Denmark hides the button in remarkable locations. Always humorous, there must be a European engineer somewhere making sport of Americans sweating over a toilet trying to find a way to flush.
  • In some countries, people are passionate about everything from love to coffee and will tell you with loud voices and (passionate) hand gestures. In others, it’s customary to be stoic and reserved even when Germany wins the World Cup. People of Europe are as varied as Americans; a Southern gentleman is a different breed than rugged Jersey boy and as such a Frenchman is not a Scandinavian.
  • No meal is complete without conversation. Breakfast, lunch and dinner require conversing as much as they require the meal.
  • Being good-looking and young can either get you into a lot of cool places or really get you into a lot of trouble.
  • The universal response to “Yes, I’m an American” will be “Oh ya, I love New York!”
  • Most men of the southern countries have body odor. We don’t know why. It’s still great.
  • Credit card and debit cards are useless pieces of plastic unless they have a microchip.
  • In the states we say “really? ” as an affirmation, meaning “wow, what you’re saying is really interesting to me”. That positive intent is lost in translation in many countries of Europe, for “really?” is taken as “I don’t believe you. You must be lying so give me three more examples until I believe you”
  • No one really knows there are states in between New York, California, Texas and Florida
  • Most US appliances and lightbulbs will not work here and vice versa.
  • There does exist European versions of rednecks, hicks, suburban moms, city kids, punk, hippies and every other stereotype. People are still people everywhere you go.
  • No one is here to cater to your needs.
  • Western pop hits play on every radio and Justin Beiber is just as hated in Europe as he is in America.
  • You have to eat slowly. It’s embarrassing to be the last ones to sit down and the first ones to go because you don’t know how to enjoy a meal. But the food is so delicious it’s. so. Hard. To. Eat. One. Bite. At a. time.
  • The further south you go, the better the food and the smaller the coffee cups.
  • The no such thing as personal space. You simply make friends wherever you go. No matter what they smell like.
  • Water is NOT free. You pay for a glass and you specify if you want it “with or without gas” (carbonated). Free water is a thing of the past.
  • “EG” in an elevator means first floor. The first floor in Europe is our second floor in America. Ground floor is the first floor.
  • Public bathrooms are NOT free. Most stores will not have a public bathroom and for many malls and public transportation, you pay a Euro or two to enter and use their toilets.
  • People value healthy lifestyles in ways I wish we could adopt in the states. Sundays are days for walking trails in the woods, biking, or simply being outside with family or friends. Smaller portions of food are served and GMO’s are outlawed in most countries. Binge drinking is not a common practice, even for the enthusiastic drinkers of the UK, so teenagers grow up learning how to drink responsibly from watching their parents.
  • To fit in you need a pair of skinny jeans. And girls should wear them too.
Nyhaven, Copenhagen
Nyhaven, Copenhagen

Overall though, it has been our attitudes and Dusty’s mechanical mind that have carried us from researching every medical need to having a really clutch wheelchair decked out with military hooks and doodads to carry everything I need. I’ve scuba-dived off the Greek coast, rock climbed Canadian cliffs, hiked Spanish volcanos and kayaked with Atlantic dolphins thanks to having the “we’ll figure it out attitude”. We intend on carrying on that attitude permanently but this newest addition to our lives of me having a service dog is proving to be different in the best sort of sense. There’s nothing for me to “figure out” or push myself against, no roadblock or challenge. Unlike every other change Dusty and I have had in our life together, Ethel only helps. She gives, more than I knew a dog could. The I-don’t-know’s of having a service Dane don’t require the same resiliency or strength of will that every previous situation has called. The things I don’t know this time around are usually goofy things about Great Danes or perks that come with having a service dog. This time, these I-don’t-knows are easy.

There are, however, quite a few of these things about Great Danes that I just didn’t know. The most prominent one being their, um, distinct smell. Ethel is beautiful, patient, regal…. and gassy like no one’s business. Both her trainers Kati and Megan warned me of this little trait early on and I assured them I’ve been living with and around Army boys for a good while now, nothing would surprise me. And while she really can stink up a car like I’ve never seen (or smelled), it’s absolutely the most adorable thing. We’ll hear a loud ripping and look over at her, laughing, while she looks around startled at whatever made that noise. I’ll be in the study working and I’ll hear an unmistakable “pffffttt” from her bed,

“Ethel! Ewwph, that’s smelly!”

“Arrumm phumppphh,” she’ll say back to me. Then her nose will perk up, sniffing, and she’ll grumble away as she gets out of her bed to lay on the other side of the room to get away from the terrible smell. That she caused.

“Try some Gas-X”, Megan once suggested as we once covered our noses in the guest house at the farm where I trained. But I can’t. I actually don’t mind, it’s another endearing part of what makes my girl so, well, Ethel.IMG_20150526_183426

 

Ethel was accompanying me on a speech therapy appointment last week and was sprawled out in boredom on her mat in the office where I was doing exercises. I was sitting across from a speech therapist and concentrating on the exercises she was asking for my brain injury rehabilitation.

“Give me three definitions of the word court in sixty seconds”

“Court. To court someone is similar to dating someone but with intention of marrying. Then there’s the judicial court where sentences on lawbreakers are passed..”

“ffffrrrrpppttttttt”

My face turned red. “Andthelastisthekindofcourtyouplaysportson” I finished quickly. I looked down at Ethel, still sprawled out, and wanted to laugh but I had never met this therapist before and she had already proven to be a very strict, no nonsense type of person. She acted like she hadn’t heard anything in response to Ethel’s contribution to my answer.

But before she could ask me the next question, I started to smell it wafting up from below the table. Ethel’s unmistakable mark. I had to bite the inside of my cheek to keep myself from cracking up.

“Ahem. Now tell me everything you can think of that is blue in sixty seconds.”

“Blue. Um, blueberries. The sky. Bodies of water…” I saw my therapist give her nose the slightest of wrinkles and I knew the smell had hit her too. “.. Donald Duck’s shirt. Sometimes Christmas lights….” She got up from her seat and moved to the doorway where she, without a word, opened the closed door to give the cramped office some ventilation.

I finished that exercise and soon I was released, where in the hallway I buried my face in Ethel’s neck to bust out laughing. Later that day I was finishing up at the Rehab Institute where I get all my medical treatment and had just been handed a copy of my appointments for the following week. I knew I was going to be scheduled for speech therapy again but I started laughing when I saw I was not going to be seeing that therapist again. Maybe she didn’t find my girl’s uniqueness as adorable as I most certainly do.Snapchat--7909754257345803981

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Finding Ethel: Part 3, Accidents Happen

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On the flight from Amsterdam to Atlanta, GA, I leaned over the tray table of my cramped business-class seat of the plane and typed,

 

“I’m finally on the flight home to the United States from living in Europe for 19 months. This journey has felt exhaustingly long and fleetingly short all at once. I have seen the sights the world has celebrated for centuries, touched the same paths my heroes walked and lived in cultures that trace back to medieval custom. I have been Eur-roped and there’s a different person in my seat flying home.

 

Almost every college kid will talk about backpacking through Europe one day, taking that Eurotrip to find themselves and let the universe and God take hold of their life. It’s nearly impossible to grasp the magnitude of standing in the Colosseum, watching the Highland Games, touching the Berlin Wall and not let it change you.

 

But experiencing this didn’t feel small, looking over the ocean from Morocco, I didn’t feel like I was a small note in the endless symphony of time or another somewhat cheesy analogy. Coming home, I feel invincible. Like a wheelchair version of Iron Man, I feel like nothing is out of reach now. Traveling Europe has forced me to accept my limits as a part of my identity, not in its entirety, but a non-negotiable part of who I am now. I don’t need to waste time fighting against those limits, trying to recreate a world where I’m as close to walking as I can. That’s wasting valuable, precious time that I can be and have been spending seeing how incredible God’s world is with the love of my life.

 

I’m a wheelchair woman and I’m incredibly proud. I’m disabled and I live loudly, enjoying the ups and downs of the path I’m meant to ride. It took getting my butt kicked time and time again figuring out how to live and travel in Europe, but I’m through the other side more refined and toughened.”

 

Reading this now, only a few months later, I understand that what I thought was strength I now see as perception. The perception to be able to deescalate a situation because there have been worse or the ability to see someone’s pain through their anger. Because strength is more than the accumulation of personal experience and the determination to persevere. Ethel has taught me, in just a few short weeks, strength is the ability to know when you need help and to ask for it. Because there will always be a wagging tail and a wet nose only too eager to lend a paw.

Getting a belly rub after a day helping me in physical therapy
Getting a belly rub after a day helping me in physical therapy

 

But it was my change in perception that allowed me to approach my first Ethel outing crises with complete and utter zen. We had arrived in Missouri and were in the process of setting up our house. Movers had come and gone, come and gone and come and went again throughout the week and it was finally time to spend the night in our new bedroom. We had a long “we’re-outta-this” list (and I’m only partially ashamed to say that by this point of the move, we may or may not have been using the hotel bath soap to wash dishes for want of remembering to pick up dish soap) and in this area so aptly named Fort Lost-in-the-Woods, the closest superstore is Walmart and that’s where we headed.

 

It had already been a long day for Miss Ethel. She had a vet appointment that morning and later had escorted me to the hospital for my own appointment. I had stuffed my pockets that morning with cookies and rewarded her with one every time she waited to let me go through a door first or ignored a person thrusting their hand out to pet her before I could smack it away (seriously, people?). I was also very vigilant about her overheating and stopped often to pour her a quick dish of water from her trusty water bottle/dog dish. What I wasn’t so vigilant about, however, was remembering that all that water she was drinking would eventually need a place to go of its own…

 

Ethel has the right face for a week of moving
Ethel has the right face for a week of moving

After we left the hospital and were driving down to Walmart, Ethel began to stand and pant in the back seat. She’s a very vocal dog, I’ve found. She’ll grumble at me when I ask her to do something she doesn’t want to do, like stay in the down position when I prepare her food. And she’ll grumble at me when I leave the room when she just laid down in her bed, rising dramatically from her fluffies with a groaning yawn and puffing her cheeks out in defiance. If I’m taking too long, a grumble. If I’m not going fast enough, a grumble. Even now, as I write this:

 

“Ethel, we’re not going to bed yet, I want to finish this.”

 

“Hrrggrrmmm….harrrumph.”

 

But when she pants, it means one of three things- either she’s hot, she’s excited or she needs to go to the bathroom. I didn’t know that last meaning until too late. We parked at the Walmart and as I waited for Dusty to grab my wheelchair out of the back of the truck, I put Ethel’s leash on. Her vest had stayed on since the last outing and as soon as she descended from the car, we were moving towards the entrance. Dusty veered off to get us a cart and I paused at the entrance next to the friendly greeter, a larger guy with a big smile for Ethel. Until she squatted right at his feet, next to those clean, blue baskets, to make a large Ethel pond for everyone to step in.

 

“Oh dear. Well oh my, I, uh, need to get some napkins,” the greeter stumbled and quickly retreated while his shoes were still dry. As I apologized and told Ethel it was alright, that this was my fault for not paying attention to her needs, another employee came forward with a tiny washcloth. Oh, sweetie. That just will not cut it.

 

Three towels and two mopping employees later, they managed to not be required to rename the entrance Ethel Pond and we were on our way. We turned the corner and stopped to collect ourselves. I gave Ethel lots of love, patting her and rubbing on her while I told her I loved her. I knew Ethel felt terrible, but I was sending off the same guilty energy. How could I do this to you?, I thought and wanted to give myself the same sort of disciplining punishment someone would give to a bad dog. Then Dusty let out a huge sigh of relief and I turned to him, curious,

 

“Thanks for being so calm back there and talking to her. That whole scene was really outside my comfort zone. It really helped that you stayed so chill,” he explained. He gave me a kiss on the cheek and I gave Ethel a rub on her ears.

 

I was able to stay calm because this whole scene is not new to me. One of the wonderful quirks of the spinal cord injury life is the inability to hold ones bladder. Sounds super fun, right? Some people combat this by drinking and emptying on a schedule, drinking exactly 8 oz every hour and not drinking after 7pm. Others, like myself, have enough feeling to hopefully know in advance that a bathroom break is needed. Sometimes I make it to the bathroom. Sometimes I don’t. In my last post I talked about how I’ve peed on highways in every country in western Europe. Well, I have one even better. I can say with a mixture of tortured pride and resolving humiliation that I’ve sat in my own puddle of pee in every country I visited in Europe and in 9 different states in America…. Accidents, oh boy how they happen.

 

When and how and where is the bathroom are always on my mind when I take a sip of water- photo credit: Copenhagen, Denmark
When and how and where is the bathroom are always on my mind when I take a sip of water- photo credit: Copenhagen, Denmark

It was in Germany that I learned how to utilize the magic of Foley catheters. Foley catheters, for those who don’t know, are indwelling catheters that attach to bag that stays either on your leg or by your side. Sounds inconvenient, but it means for the entire day I don’t have to rush to the bathroom or monitor how much I’m drinking in proximity to availability of a toilet. We were traveling on a weekend in the Bavarian Alps of Germany to do some hand cycling and biking in the summer and I wanted to be able to get in the car, get on my bike and drink water all without fear of having an accident. Unfortunately, leg bags are kind of small and they’re visible as this big bulge on your leg underneath your pants. Not pretty. So I had the brilliant idea of attaching a larger bed bag instead and stuff the bed bag down in my long boots. Invisible, right?! I applauded myself for my genius as we got in the car and started driving through the beautiful Alps.

 

I don’t read directions. Usually ever. Either a huge fault or an endearing trait, depending if you’re talking to my husband or myself. If I had read the directions on the bag or translated the German from my German bed bags, I would have read that there is an emergency overflow filter that will start to seep out the liquid when the bag reaches a certain pressure. With my bag stuffed down into my boot, the bag was already at a high pressure from being crunched and squeezed. And then as I downed my liter of water, the pressure mounted. I don’t have sensation in my feet or I would have felt that my ever-so-cute boot was slowly filling with warm pee. Don’t worry, dear reader, I eventually did notice. When I shifted my legs and I noticed my boot was dripping. The last time I sacrifice practicality for vanity.

Konignsee, Germany
Konignsee, Germany

 

So when Ethel spread her haunches to take a squat in front of the entire store, this was no big deal. At least this time I was staying dry.

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Later that week….

 

My husband and I have been going to marriage counseling since before we were married. We were required to attend premarital counseling to be married in my church and when we went, we realized how much we loved it. You mean there are people who tell you how this whole marriage thing is supposed to work? That other people fight in the middle of grocery stores and it’s not just us? Dusty was 21 and I was 19 when we married and as many know, kids don’t al know how to be married. So at every duty base, we look for marriage counseling. This has given us the communication tools to build a foundation strong enough to outlast each struggle we’ve come across, including me becoming a paraplegic two years into marriage.

 

Today was our first meeting with the chaplain that we’ll be counseled by. We gave him our back story and told him a little of the communication struggles we’ve come across in this six-month transition of moving back to the United States. He talked to us about expectations and informed us of a little marital formula; when you have expectations – reality = there’ll be disappointment. The expectations of a smooth move minus the inevitable reality of how complicated the military turns a move out to be equals disappointing frustration in how messy our transition turned out to be. He then referenced the variable of my disability into this equation (which was fine, we were already talking about the different parts of the move that involve my medical needs) as “when you have this tragedy in your life already…”

 

My skin crawled. I reached down to stroke Ethel’s back laying down beside me. She had achieved boredom almost the minute she laid down and had arranged herself along my wheels so that I couldn’t possibly move while she slept. I traced her heart patch on her shoulder while I listened to him continue. He wasn’t out of line for calling my disability a tragedy, not at all. We were talking about some of the hardships of the move back to the United States that concerned my chair and how Dusty and I can communicate effectively about these hardships. But still I felt my defensive shields go up.

 

On paper, becoming a paraplegic is very tragic. It’s traumatic and sad and is cause for overwhelming sympathy. On paper. And in my opinion, on paper only. Because becoming a paraplegic and living as a paraplegic are completely different things. Becoming a paraplegic is tragic but not hopeless. Living as a paraplegic is defined by the person in the chair. It’s a choice to make the life of a paraplegic a good one and not turn the chair into a tragic piece of your existence. My disability is not tragic. My story of becoming a disabled woman may be tragic, to some. But that accident does not define the life I live now. My chair is not negative to me, I don’t hate my body or “could, would, should” my dreams away.

 

Paris, France
Paris, France
Walking the Thames is one of the quieter spots in the city and is a good break from the crowded tourist zones
Walking the Thames is one of the quieter spots in the city and is a good break from the crowded tourist zones
University of South Carolina 2012
University of South Carolina 2012

This is hard to understand, as evidence by the strangers who ask me at the grocery store “how I could ever keep living like this”. Is it too fantastical to imagine a disabled person as happy? And not “only as happy as their broken body allows them to be” but truly, honestly happy. Happier than many able-bodied people. How much imagination does it take to see someone with a disability as a person content with their life?

 

So sitting in the counseling session, there was a pause as the chaplain finished talking. Ethel perked her head up at me as I stroked her and looked back at me. I felt her calm strength flow through her skin to mine and give me courage to speak. “This is a great life,” I firmly said. “I love living like this, moving and exploring and doing it all from my chair. There might have been heartbreak at the beginning, but when given the choice to live or give up I chose to live. What kind of life would we have if I hated living in a way that I couldn’t change? What kind of life would we have if I stopped trying to be happy? It wouldn’t be a life. It couldn’t be. This is a good life we have and I’m glad we’re living it.”

 

Dusty smiled and leaned over the gap in between our chairs to give me a kiss. Ethel looked up at me, mouth open and tongue hanging out, and smiled.

 

Ethel getting ready to help me out of my handcycle after a ride
Ethel getting ready to help me out of my handcycle after a ride

We’ve truly began building the layers of bonding that are needed between a service dog and her human. But when emergencies happen too early, it may or may not be instinct for the dog to be able to respond quickly when they haven’t had a chance to get to know their human because it may not be instinct for the human to be able to control the dog. Can I stand up the test of being in control with Ethel in an emergency? Can Ethel respond to me when I can’t tell her I’m in trouble? Find out on the next Finding Ethel…

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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

 

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