‘Til We Meet Again

Hello all! Thank you for all your comments, views, thoughts and sharing of your heart over this past year. I’ve truly enjoyed writing about our travels, my giant baby Little Miss Ethel and what it really means to live disabled in an able bodied world. I’m going to take a break from writing for a bit so that I can pursue a lifelong goal and something I never stopped working towards; I’m applying to medical school! After my accident, I finished my undergraduate degree in Biological Sciences and completed a Neuroscience thesis to earn an Honors degree. I have not and will not give up on this goal and I’m taking some time to allow for focus. I may post photos of our adventures from time to time, but I won’t be writing. Thank you for all your encouragement towards my book (talking to publishers now!) and I can’t wait to talk again soon. Thank you.

See You Soon

 

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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, I'm Hers

imhers

After I did my inpatient rehabilitation for my injury, I was impatient to go right back to college with the promise that I would continue physical therapy. Getting back to life was incredibly important to the both of us. We both knew that walking again may not be possible but getting a college degree could be. I was scared to go back to college and the question of whether or not I could finish tortured me the entire summer. I spoke with therapist after therapist while I was in inpatient rehabilitation about attending college as a paraplegic and I was hesitant to believe their encouragings. But while I was learning to tie my shoes, lay down in bed to put pants on and take a shower the new way, Dusty was working on my fall schedule at college with my advisor and making sure that the financial aid portion was still intact. I hadn’t been convinced yet that I was capable of finishing college but Dusty knew that I was.

 

Fort Jackson, South Carolina
Fort Jackson, South Carolina

As the beginning of the fall semester neared, we said goodbye to the therapists at Shepherd Hospital and with the attitude of “nothing is impossible”, I went forth into college. We were met with a community of love unsurpassed by any other that I’ve ever known. I had gotten to know some of the local women of Fort Jackson in South Carolina in a Bible study called Protestant Women Of the Chapel and two women in particular took me in as their own. They adopted me as my new Army moms and as they listened to my worries and fears, they gave me the humor and the courage to be able to face any trouble about the Army could and would bring in our future. Just a few weeks after my new moms and I met , they rose to the occasion of my accident and rallied behind Dusty every minute of every day. Dusty was able to come and go from the hospital due to the schedule they made to have someone by my side, whether it be a chaplain, themselves or another one of our many Army friends that they brought into our lives. Dusty didn’t spend a single dinner alone but was surrounded by Army families night after night. It was truly a miraculous time of the Army surrounding one of its own. When I awoke and learned all this, I don’t know if I’ve ever felt more loved.

 

Graduation with Honors 2012, University of South Carolina
Graduation with Honors 2012, University of South Carolina

We had motorcycle escort leaving the hospital to take us all the way home to Fort Jackson. The Army and Dusty had worked hard to find us an accessible home on post and the women of PWOC had unpacked us, decorated and moved us into a beautiful, settled house. Even my underwear had been folded. I got out of the car in our new driveway to cheers and shouts of love by the Buffalo soldiers, PWOC women and Army family that had come by to greet us. I surprised the crowd by showing them that I could stand up with my four arm crutches before being lifted by Dusty and carried over the threshold to our new home. And what a beautiful house it was. We both felt too young to live in a house this organized and picturesque, reminding us more of a Better Homes and Gardens ad than our previous college apartment. How blessed were we.

 

Presidential No Limits Student 2012, University of South Carolina
Presidential No Limits Student 2012, University of South Carolina

College started and there are volumes to write about those first few weeks. But quickly I learned one thing, that I was terrible at pushing my wheelchair through anything that wasn’t pavement. Sidewalk cracks? Fell right over. Cobblestones? Don’t ask. The lip from exiting the elevator to the tile? Yep. For some strange reason, seeing a girl in a wheelchair fall on her face out of her chair really freaked some people out and they thought they should probably call the ambulance. Dusty would get weekly phone calls from some stranger who’d taken my phone to tell him that I was on the way to the emergency room. Again. Soon I began to recognize and know the EMTs who’d pick me up,

 

“Well hey Julia! Looks like someone fell again, you do know that wheelchairs only work when you stay in them.”

 

“Hi Joe. Shut up.”

 

I was always fine but with a new spinal cord injury and fused vertebrae, falls meant X-rays and double checking. Dusty would have left his meetings, briefings or yelling at some basic trainee to arrive at the hospital to take me back to get my car. Eventually he started designing inflatable cushions that I could deploy from my chair and would poof! surround and protect me. Or tried convincing me to wear a bike helmet to class. I squashed both those ideas and promised him I’d get better at paraplegic-ing.

 

One of the hardest things to learn in rehabilitation for my spinal cord injury was learning how to fall. It seems counterintuitive to try to fall from a wheelchair, but falling properly will save a head and a neck from further injury. I rolled down hallway after hallway with physical therapists who had me on a gate-belt leash and tried tucking my head and rolling forward from my chair to the floor. Absolutely terrifying every time, no matter how prepared I was for the fall. I thought I’d grow use to seeing the floor rapidly approach my face and feeling my elbows scrape the ground, but here I am four years later and I’m still scared. I know I’m only a few feet from the ground, so it’s not as big of an impact as if I were one of those standing people but the floor has not yet become my friend. So when I was told about my options to get a service dog, my first thought was “Aha! A bodyguard to protect me from my nemesis!”

 

Some people are bad at swimming, some people are bad at dancing, I’m bad at being in a wheelchair. I was clumsy before the accident but now add clumsy with four wheels and sometimes it spells disaster. I’ll routinely forget to lock my breaks, I won’t look when I’m turning a corner and I’ll smack into a wall, or I bend over without checking to see what direction my wheels are pointing in to only forward out of my chair. So when Carlene told me during my applicant process that the main responsibilities of the dog would be to help me transfer, stabilize me and help me get back into my chair, I was ecstatic. Someone to help me dummy-proof being a wheelchair-er? Sign me up!

A wounded vet's  emotional therapy dog, Stuttgart Germany
A wounded vet’s emotional therapy dog, Stuttgart Germany

 

Fast forward a year and I now have by my side the most beautiful Great Dane I’ve ever seen. She watches me all day and trots along beside my chair whenever I leave the room. She gets upset if I go into a bathroom that’s too small for her and will try to stick her nose or paws under the door to reach me.

IMG_20150523_143715 IMG_20150515_152714 IMG_20150429_214020

 

But the first scary medical emergency cemented a bond between Ethel and myself that I didn’t know we could have. I was home without Dusty and blaring Taylor Swift in the bathroom as I took a shower. I had my wheelchair by the tub and was sitting on a sound shower bench, but I’m not ashamed to say I was also doing a good amount of dangerous dance moves. Ethel had fallen asleep on the fluffy in our connected closet while she waited for me. The song changed to Katy Perry and I turned off the shower,

 

“You hear my voice, you hear that sound,” I sang along, badly, grabbing a towel.

“I stood for nothing, so I fell for everything…” I reached for my chair and grabbed the shower railing to lift myself to transfer, but the railing was slippery from spilt conditioner and my hand came slamming down on the edge of the tub as I tumbled down to the floor.

 

My legs had been twisted painfully in the fall and the shoulder I landed on was throbbing. I gasped a breath and opened my eyes to Ethel standing over me, her nose in my face. “Ethel, lie down”, I commanded from remembering that lying down was the first step in the procedure for helping me back into my chair. She pushed aside my chair to make room for herself to lie beside me next to the tub. She crossed her paws and watched me trying to slow my breathing down and stay calm. “Thank you Ethel, okay sweet girl. Okay, we’re okay. I’m okay. It’s going to be okay,” I spoke between deep breaths. I had landed on the same shoulder that had been injured in my spinal cord injury accident and it was starting to radiate pain down my back. “Okay.. It’s going to be okay”, I put my arm around Ethel and held her, burying my face in her neck. When I felt calm enough, I asked her to stand and brace, pulling me up to knees and able to grab my chair and transfer safely. I got into my chair and exhaled and then hugged her as tightly as I could while she smiled and wagged her tail. She got a Kong full of peanut butter, her favorite treat, before we went to bed that night.

 

But that experience flipped a switch for Ethel and I. When I’m stressed, she’ll come to my wheelchair and paw at my hands with her nose or lay down in front of my wheels. She watches me and knows my mood sometimes as soon as I do. She’ll relax when I relax and open her paws when she’s lying down so that I can rub her tummy. She knows now just how much I need her and I believe that makes her happy. When she’s free to roam around a nearby field and sniff to her delight, her mouth opens in the biggest grin when she gallops back to me when I call. She asserts herself into every interaction I have with the world, not so much for me to know that she’s my dog but for her to tell the world I’m actually hers. I’ll lean down and rub her ears, telling her she’s my good girl but when she reaches out to put her paw on me, I believe she’s telling me that “no, actually, you’re my good person.”

Rehabilitation Center of St. Louis, Washington University MO
Rehabilitation Center of St. Louis, Washington University MO

 

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Kiss of Death: the ‘Pity Look’

When I roll through a busy sidewalk, my biggest struggle is not trying to navigate between strollers and avoid fruit stands. My biggest struggle is to meet people’s eyes when they look at me. I know what I’m going to see, the look that makes me feel helpless, alone and incapable; the pity look. The furrowed brow, the mouth that drops slightly when they see me, the open eyes that say “you poor dear. You are just the saddest thing and no way should you be out here by yourself”. This look is the face of the unfortunately universal societal expectation for disabilities; that they are something to be pitied first and foremost.

Yet I pity those who look at me like that.

Anyone who fails to see the potential in someone with a disability, the capabilities, the accomplishments or simply the human in the chair fails to meet the disabled worlds’ expectation that we will be treated equal.

Sometimes I can’t tolerate the comments, stares and parents not correcting their children’s comments. On these days, days when I don’t have the energy or motivation to tolerate and educate, I wear my aviator sunglasses indoors to get groceries. I wear headphones and blast music and don’t look at people in the eye. I retreat from social interaction. This is not a great strategy, but everyone has their limits.

When I was injured, my personal focus during recovery was to do everything I could to be “normal” again. But no matter what I did, I always fell short. Doing “normal” things like washing dishes, laundry, going to the bank or going out to eat weren’t even close to the “normal” that was before the accident. It took me time to realize that the point wasn’t to “return to normal” or even to return to anything at all. I now had a new body and with that came a “new normal”.

 

And what many find hard to understand is that I like my “new normal”. My “new normal” is a lot of fun; who else gets to skip the security line at an airport or can get a super awesome Great Dane service dog? I do, however, struggle with my new life as a disabled woman because of how I’m treated and seen out in the world. Traveling throughout Europe has taught me crucial lessons about the disability world; the first being that the ‘look of pity’ is universal and will always be found. That’s discouraging because there’s a lot about me for someone to be proud and not pity. I only struggle with my body and my limitations when I’m treated like a helpless invalid. Sometimes I wish for invisibility or just to roll through a crowd and not be seen at all.

But I’m proud of myself. I’ve learned from my experiences here in Europe to not expect the society I interact with to treat me like I’m a capable adult; it’s my job to be assertive enough to be independent when I want independence and ask for help when I need it. I don’t look to my society anymore for affirmation of my accomplishments no one will be proud of my honors Bachelor’s degree when they’re more interested in how I drive my car or how I get groceries alone. So instead, I’m my own cheerleader, I’m my own coach. I’m proud of myself and more importantly, I believe in my own strength to be able to meet the eyes of the next ‘pity look’ and roll on.

Puerto Naos playa
playa de Puerto Naos, Canary Islands

 

 

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Do I feel pretty?

 

Oktoberfest, Munich
Oktoberfest, Munich

Do you remember the first time you felt beautiful?

Guys, do you remember that first moment where you felt like the stud in the room? For girls, was it prom? Was it the moment you put on your dress or when you saw yourself after your hair was done? For guys, was it the first time you put on your team jersey and got out onto the field? Now this one might be harder, but do you remember the moment when you stopped feeling beautiful?

It’s harder to see a beauty or a handsome guy when there’s a whole lot of wheelchair in the way. Sure. But does it need to stay that way? The first time my husband told me I was beautiful when we were dating, I didn’t believe him. I was nervous, he was cute and I knew my make-up could not be covering up the volcanoes of breakouts on my face. The day I believed Dusty was when I saw his jaw drop as I was coming down the aisle. I learned my own beauty by believing the compliments and comments at the beginning and then growing to believing in myself. I grew to know, from the respect and love of my husband and finally in my own opinion, I was drop dead gorgeous.

And then I woke up a paraplegic.

I was 21 when the accident occurred, which is a fragile time for a young woman. My growth in having a positive self-image was immediately arrested and I had to start all over. Looking good is one thing; looking good sitting in a chair and being 4 feet lower than everyone else is quite another.

Today, I have no idea if I’m actually beautiful by everyone else’s standards because I don’t understand what people actually see when they see someone with a disability. In my experience, generally people only see my chair when they meet me. It doesn’t matter to me if they think I’m attractive; someone who ignores the person but sees the chair is not a person whose opinion is worth valuing.

No, I have no idea if I’m truly “beautiful” because the person whose opinion I care about, Dusty, still thinks I couldn’t be more gorgeous. And that didn’t change with the accident. So I learned to once again trust in my own self-value and look the way I want to look.

And how do I want to look? I think I’m drop dead gorgeous, so I want to give all those people who stop to look a true reason to stare.

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