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.
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…
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.”
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.
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.
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.
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.
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.
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…