DAILY LIVING & MOBILITY

Stella's SCI Story Pt 3: Happy Hope

Spinal Cord Injury (SCI)

Elina Taranenko

Home: So Near, Yet So Far

You want to be home when you are battered in life and vulnerable. Be home so you can feel safe and nurse your wounds. Back then, that wasn't an option. In fact, I knew I wouldn't have that option for a long, long time to come. Still... Melbourne was too far from home, so I asked for a transfer to Sydney as soon as I could. It was hard.

I was barely breathing on my own. My neck was still broken, waiting to grow back. I had to be secured by 7 pillows on the reclining wheelchair when I was not in bed so I wouldn't fall out of it. I needed to be manually turned by 2 people every 2 hours so my flesh wouldn't rot.  A 1hr flight home had never looked more challenging. 6 weeks later, with enough nagging and even more hard work on my breathing, I was given the green light.
 
I didn't have anything to pack, nor did I have any clothes to wear. Except my metal head cage and a hospital gown. It was an important day of my life. I woke up especially early, asked my nurse to brush my hair and put on a new gown. Because I wasn't allowed out of bed, she couldn't tie up the gown behind me, so I asked her to tie the strings into pretty bows on the side. 

It wasn’t much, I know. It’s not easy to hold onto your dignity and self-respect at a time like that, but I tried. After that, I waited for people to come and wheel my bed into an ambulance, and from the ambulance into a tiny patient transport plane. The plane was so small. My nurse could hardly sit straight. It was so noisy, I could hardly hear him talking. Not that it mattered. Nothing mattered.

The flight was tense, the look on the nurse's face said it all. My blood pressure wasn't doing well, my breathing became difficult, my ears were so painful, I honestly thought they were going to pop.  Before I knew it, I had my face covered in oxygen mask and had who knows what drugs pumped into my veins. I didn't care, I was going home!

Then I landed in Sydney, again wheeled into an Ambulance, then into a building, a few lifts and many long corridors later, I arrived at unit 7D of the Royal North Shore Hospital. 

After spending the whole day staring at different ceilings, they sat me up. In that room, there was a window, and beyond the window was the blue spring sky. Sydney’s blue spring sky! I was home, and yet I wasn't. I was back in the same city I lived in and loved, somehow nothing felt the same any more. Home, so near, yet so far.

Moorong, The Place of Death

It's usually a happy thing to be discharged from the hospital.   It usually means you have your health back, you get to go home, you get to live your life and everything is ok again. But for me, leaving the hospital meant having to spend the next 6 months in a slightly different institution call 'Moorong Rehabilitation Centre'.
 
I looked up "Moorong". It means "Place of Death" in aboriginal language.
It was December 2002, the world was getting ready for Christmas. I packed my bag and got on a rehab centre minibus where it dropped me off in front of this really dark federation style, red brick house. The house glowed a frighteningly blue hue in the twilight that still haunts me today when I think about it.   This was going to be my home for the next 6 months.

I flicked my hair back, cleared my throat, took a deep breath and went up the ramp. By now I was meant to have finished my honours degree and be on my way to South America. Instead I watched the nurse unpack my bag in silence, then feed me a leftover curried egg sandwich.
I sat there quietly. I couldn't move my arms to do either of those things myself.

A scary realisation dawned on me. "I may never be able to do anything myself, ever, ever again." That night, two nurses came and put me to bed. I stared at the ceiling until dawn. The night was long, I didn't know how long, except when the nurses came into my room every 2 hours to turn me because I couldn't turn myself.  

That was the same ceiling I stared at for all those sleepless nights, Christmas, New Year, Easter, and my 23rd birthday.  Summer went and Winter came. The falling leaves in the courtyard reminded me of time passing while everything in my life just froze. Dignity was a luxury there. With no movement below my shoulders, nurses were my hands. They did everything for me from getting in and out of bed to in and out of clothes, eating, grooming, answering the phone...   While in the hospital, I was naive enough to tell myself that everyone needs nursing help in hospital, but as time went on in rehab, it became more and more frightening:   “Is this it?” “Is this how I have to live the rest of my life?” “But… I'm only 23!”   Moorong, The Place of Death. You die or you live on!

Because You Can!

Remember in the movie "The Sixth Sense", how ghosts looks depended on how they believed they looked? Don't you wish you can do that in real life? What if you can?  It's been so long since I looked at myself in a wheelchair, so long that I almost forgot the wheelchair exists. My days are packed full with typical concerns of a 30 year old. At work, it's business, travel, closing deals, managing the people around me and promotions. At home, it's relationship, marriage, friends and family.
 
At times, I stress about things, I get angry at the unjust treatments I have to endure at work. But in the midst of all my life struggles, the last thing that crosses my mind is my disability. I remember someone asked me once, how do you find job searching in a wheelchair? I thought about it and said: "I'm young, I'm a female, I'm Asian, I work in investment banking at Vice President level...The wheelchair is the least of my worries."  Your life is what you make it. People perceive you as how you project yourself.
 
And you, are the most powerful person at determining how the world sees you. It will be a long journey before we physically walk out of our wheelchairs. In the meantime, YOU can make the wheelchair disappear in other people's eyes.  

My husband and I both used to hang out in a big group of single guys and girls, which is how we met. As a young, up and coming fund manager, he used to attract attention from all kinds of girls. After we got together, I would often ask him how he found the strength to date - and eventually, marry - a quadriplegic. His answer was simple: "It never bothered you, so it never bothered me. In fact I hardly noticed the chair was there."   I remind myself of that every time I go into an important meeting, every time I meet new people. Ask the loved ones around you; they will tell you they only see you and not the chair. Now, the second half of the job is to project that to the whole world.  

Head high, chest out. Ignore the uncomfortable glances and put my hand out before they have time to contemplate whether or not they should shake hands. Engage with my eyes and warm smiles, Distract them with conversations.   Watch them relax before my eyes, and start talking to ME and not to ‘the girl in the chair.’   Many people did it before me and many of you will do it, too.   You know hard work always pays, and you know, YOU, are the most powerful person in your life.   So go on... Reclaim your body and take control of your life because you can! And we are here to show you how.

EMPOWER OTHERS!

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