Losing More than My Mother

Losing More Than A Mother But Maybe She Wheel Julia Rodes

 

 

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

 

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

 

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

But Maybe She Wheel

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

 

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

But Maybe She Wheel

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

 

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

But Maybe She Wheel

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

But Maybe She Wheel

 

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

But Maybe She Wheel

 

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Finding Ethel: Part 2, Day 4

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

 

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

 

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

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

 

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

 

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

 

 

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

 

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

 

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

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

 

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

 

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

 

Ughh.

 

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

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

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

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

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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