Carolyn Pioro on life after a devastating spinal cord accident

I lie motionless. I’m blanketed in a morphine-induced fog, but there’s a comfort to my fog; it’s keeping me safe, protecting me from a very severe reality.

I’m in the ICU at Toronto Western Hospital. I feel a tube down my throat and that tube is helping me breathe, but it’s also keeping me from speaking. I signal for my father to come closer; I do so through a series of slight head nods, extreme eye blinking, tongue clicking and, I guess, an overall expression of panic. I mouth that I want a pen, that I badly need a pen to write something down. “No, I’m sorry, sweetie, but you can’t have a pen; you can’t...” Then I notice that my hands feel like they are clenched in incredibly tight fists. But instead of feeling my fingers pressing into my palms, I have an odd burning sensation, akin to when your hand falls asleep, only dial that up to 10. Later, this was explained to me as something called neuropathic pain, a chronic condition caused by extreme damage to the nervous system. The body's sensory nerves still think particular limbs are where they should be, even if the connection's severed.

No great wave of panic sweeps over me. I just let the reality sink in. I can't feel anything anymore, nothing real anyway, only these phantom sensations. And I make myself face what my father has to heartbreakingly confirm: I am completely paralyzed from the shoulders down.

The accident

On Tuesday, September 20, 2005, I’d just come back from lunch. I was working as a circus performer for a Toronto-based company, Cirque Sublime, and my colleagues and I had been preparing — almost daily — for an upcoming tour that would see us performing in arenas across southwestern Ontario.

I usually performed on the rope or bungee trapeze, but on that afternoon I was training with a group of three others on the flying trapeze. I’d never felt comfortable on it; in my other acts I was on my own and felt more in control. My big trick for our routine was called a layout. I would swing through the air, let go of the bar and flip for a single revolution with arms outstretched (kind of like a reverse swan dive); then my wrists would be grasped by the catcher. The catcher stays on his bar at all times, swinging upside down with his arms out and ready.

I began the familiar climb up the cold 40-foot ladder to the takeoff platform. I hated that climb. There were about 20 rungs to the top, and with each step my mind switched from focus to fear and back again. Warm tears began brimming. I blinked to hold them back, not wanting to touch my eyes with my heavily chalked hands. For flying trapeze we wore grips much like those a gymnast wears on the uneven bars. My palms and the tops of the grips were packed with a generous amount of hard white chalk. The hands of a trapeze artist, like the toes of a ballerina, are a mangled mess. I would spend a good part of every morning with a straight razor, shaving off the tops of my calluses so they wouldn’t rip open while I was swinging. I wasn’t always successful; my grips had a permanent pink tint to them.

Angie, one of the other aerialists in the troupe, was waiting for me at the top. She reached out and grabbed onto the trapeze bar until I could get a firm grasp of it with my right hand; my left hand held onto a support beam to the side as I leaned forward and prepared to dismount. With a quick inhale I leaped from the platform.

The trick didn’t go as planned. I swung through the air, working to achieve as much height as I could so that when I let go of the bar and flipped, it looked as if I was flying effortlessly — except this time, when I stretched my arms out to be caught, my 112-pound body was struck in mid-air by the over-200-pound catcher. He remained stable on his bar, and I was sent spinning. Knocked off-kilter, I was completely lost in the air and totally unprepared for how to handle this type of situation. I wish someone had been on the ground, watching our training, someone who could have called out instructions on how to land safely in the net below. But I was alone. Falling.

There are many clichés describing our bodies as being “hard wired” or the chemistry between two people as being “electric.” They are surprisingly accurate. I hit the safety net in such a way that my neck was the first thing to make impact. I heard an audible snap and saw a flash of blue light. Like wires short-circuiting, I became unplugged.

Right away I knew I’d heard my spinal cord sever. I was told that I flopped around the net like a rag doll, but I don’t remember that; I recall only my final resting position, which was on my stomach with my head turned to the side.

“It’s all over,” I called out. “My life is over. I can’t feel anything. I can’t move.” I remember the catcher coming down from his perch and actually telling me something along the lines of “Calm the f--k down. You are going to be fine.” I knew I wasn’t. Someone called 911. Through my cries of “It’s all over,” I also asked, “Can someone call the restaurant and let them know that I won’t be able to make it in for my shift today?” (I was also a server at the time.)

What followed was an absolute clusterf--k of a situation. The police arrived first, then the fire department and lastly an ambulance. I was still on the safety net, bobbing around about five or so feet from the ground. The emergency workers were unsure how to get to me and stabilize me on the spinal board. As they fumbled to find a way to get me down, I remember pressing my face into the net’s webbing. I had completely lost the ability to move anything below my shoulders, and all sensation was gone. I pressed my face down even harder. I wanted so badly to feel something.

A saving grace

Despite all the chaos, luck was on my side for a nanosecond. The ambulance driver was instructed to go to Toronto Western Hospital, and the neurosurgeon on call that day was Dr. Michael Fehlings, one of the world’s most renowned neurosurgeons and research pioneers. My spinal cord was damaged quite high up, at the cervical fourth and fifth vertebrae — also called C4/5. It was severed completely, leaving nothing connected, making the trauma a complete injury. Picture a piece of celery: Sometimes when it’s snapped in half, little strings remain between the two broken pieces. With an incomplete spinal cord injury, some of the strings (nervous tissue) can remain intact, meaning you could possibly regain some movement or have mobility and sensation in a particular part of the body. This was not the case for me. As my brother said, I went big.

I was taken into the operating room right away; my neck was opened up and the vertebrae were stabilized. Bone was removed from my hip and grafted into the back of my neck, and I was fitted with eight screws, two rods and a plate. Decompression surgery (a procedure that prevents the injured spinal cord and nerves from experiencing further degeneration) was performed very early on, and it was this decision that saved me from being forever dependent on a ventilator; I’d be able to breathe on my own and shrug and roll my shoulders. It may seem a small consolation, but it’s an important one.

Unfortunately, though, my family was told that I was not eligible to be enrolled in a clinical trial for a regenerative drug called Cethrin, because my level of injury was too severe. They were left heartsick and afraid, for both my immediate recovery and my very uncertain future.

Enforced isolation

I had very few visitors during my two months in intensive care. I kept it that way on purpose. I knew that I wasn’t going to beat this paralysis thing, that I just needed my condition as a quadriplegic to stabilize before I could move on to whatever was next. I allowed only my mom, dad, brother and soon-to-be-sister-in-law and two close friends from the restaurant I had been working at to come see me, and what they saw looked pretty grim.

Besides the breathing tube down my throat, I had myriad IVs poking out of my arms like marionette strings; electrodes lay tangled across my chest, monitoring my heart rate and breathing; I wore a thick grey neck brace that gave me a perma double chin; plus, a tube ran from inside my stomach, out my nose and into a canister that was filling with what appeared to be dark olive-green ectoplasm. (It was actually bile, and the tube was attempting to help the bile and gas exit my overly distended abdomen.) And to top it all off, I was already getting some pretty noticeable root growth as my hair colour began to fade from a vibrant red to my natural mousy brown. Dead sexy, eh?

But those six amazing people from my innermost circle came to see me, bringing comfort and normalcy with each visit. My dad would read me the newspaper; my mom applied hand lotion, as the rough calluses I had built up were beginning to disappear. My most loyal friend from work, David, would come in twice a day and talk about the goings-on at the restaurant and really just anything, even something as trivial as his neighbour stealing his garbage bins. Since the breathing tube still made it impossible to speak, having someone to listen to, someone to sit beside me, was exactly what I needed.

Then there was my older brother, Matt, the person who helped the most to make my time in hospital bearable. We’ve always been close, and when we’re together we can take on anything. On his first visit he arrived with a stack of printouts; he’d been doing some internet research and had read about quadriplegics who wrote using assistive technologies. Encouragingly, and almost excitedly, he told me I could still write. And all I could think was “I. Don’t. Want. To. Write.”

The end of life as I knew it 

My whole world was movement. I had completed an undergrad degree at the University of Toronto (in semiotics and environmental studies), but my extracurricular pursuits took precedence. In high school I was a star field hockey player; I represented Ontario in trampoline at the national championships. By university, I was rowing competitively and, with my various crews, won Ontario titles and placed second in our division at Boston’s prestigious Head of the Charles regatta. It was this lifetime of activity and flair for the dramatic that led me to circus school.

When I wasn’t performing or training, I was a flirty server at Terroni, a trendy Toronto Italian restaurant, and I often spent my weekends dancing at nightclubs. When I danced, I felt strong and beautiful.

But during the summer of 2005, when circus training became intense, at 26 years old, I turned away from almost every other facet of my life to concentrate on the upcoming tour. I dedicated every ounce of myself, all of my energy and passion into a discipline that would in turn destroy my body and my spirit — in a sense, who I was and who I dreamt of becoming.

Breathing on my own

Partway through my stay at Toronto Western, the breathing tube was removed. I had a tracheotomy (an incision was made in my trachea and a tubelike appliance inserted) to make it easier for me to breathe, through both my mouth and my nose. I was still hooked up to a respirator because I wasn’t breathing on my own yet — or able to speak — but it was a relief not to have a tube down my throat.

My family was given a communication board that grouped the alphabet in clusters of four letters. They would point to the different groupings, and I’d nod when one of the letters I wanted to spell with was in that group. This was extremely frustrating and, in all honesty, my parents sucked at it. They would read out all the letters, saying, “P . . . L . . . I . . . S,” but since they were all jumbled, they didn’t see that they spelled lips, and that I wanted lip balm.

While I was fighting to recover physically, my devastated family was forced to suppress their emotions in order to focus on navigating a murky and unfamiliar system that would help usher me into my new life as a quadriplegic. They had to give notice to my landlord, pack up my apartment, meet with a social worker to learn about disability-support programs and find a lawyer to grant them power of attorney until I could handle my own affairs again. I’ve never wanted to trade places with them. I will never have to know what it’s like to hurt for my child or feel my sibling’s pain right down to the marrow of my bones. Not like they have.

Finding my voice

Finally, after two months, I was breathing on my own and speaking again, and I was discharged. My voice had become higher and softer; the muscles that supported my diaphragm were paralyzed. It was a challenge at first to sneeze and cough. I was brought to Lyndhurst Centre, a rehabilitation hospital in Toronto that focuses exclusively on spinal injuries, to learn how to live with paralysis. For me there were no miraculous breakthroughs. My regimen included stretching (so it would be easier for others to manipulate my limbs and help me get dressed) and being put on something called a tilt table, which made it possible to stand and bear weight on my legs, in hopes of preventing osteoporosis. Learning to drive my head-controlled wheelchair was not jus a logistical challenge but an emotional one as well. Up until that moment I had been in bed, but when I was put in my wheelchair, I had to realize that I was not just someone who was injured but a person living with a disability. My body was a constant reminder of the tragedy.

The nurses taught me how to direct my care — as I was now 100 percent dependent on others to help me — from instructing people how I want my teeth brushed or face washed, to the nitty-gritty of how I would be assisted with regard to my bowels and bladder. (Frankly, if I’d ever imagined myself going to rehab, it would’ve involved far more emo romanticism, as in movies like Girl, Interrupted, and way less information about my colon and urinary tract!)

What offered me my first glimmer of ‘hope’ was learning to use an optical head mouse. A reflective dot was placed on the bridge of my glasses that a small box on top of the computer could follow, so when I moved my head around the computer screen, the mouse cursor moved as well. I learned to use a program called Dragon NaturallySpeaking that through voice recognition lets me type and give commands to the computer. But you have to speak to Dragon with the careful cadence of a news anchor — it has no idea how to distinguish between “I scream” and “ice cream.”

Early on, dictating was difficult: I’d get winded easily, and using the head mouse made my neck very sore. Over time my neck and core strengthened and helped me uncover a way to work, communicate and exist independent of the assistance I needed for everything else. I was slowly regaining my voice.

Life after the fall 

I stayed at Lyndhurst for eight months I had nowhere to go. I couldn’t live in my old walk-up apartment, and my parents’ two-storey house wasn’t going to work. In July 2006, approximately 10 months after my accident, I moved into an assisted-living residence downtown — in reality, a sketchy high-rise building — plagued with violence, drug dealing, bedbugs and cockroaches. There I received 24-hour assistance from a staff of personal-support workers. I met a handful of remarkable women who really did ‘get’ the job and were genuinely helpful. Unfortunately, they were not the norm. The rest treated my apartment solely as their workplace and me as an inconvenience that got in the way of their watching The View.

One morning I asked to put on a crisp white shirt that had little hooks and eyes and a skirt with a long double zipper. My attendant mumbled under her breath the entire time she helped me and afterwards asked, “What are you getting so dressed up for anyway? It’s not like you have a date.” Later, she filed a complaint stating that my clothing had too many hooks, clasps and time-consuming accessories. Staff members were afraid of straining or spraining their hands and wrists while assisting me. I’m not sure what made me feel worse: the dig about dating or the fact that someone whose role it was to act as my hands would carry out her job in such a hurtful way. I was left feeling crumpled. Being someone who loved fashion, I saw my life heading into an abyss of yoga pants, sweatshirts and Crocs.

Making my own rules 

Things changed drastically for the better in the early spring of 2010, when I became eligible for Ontario’s Direct Funding program. Essentially I’m now a small company and receive government funding for assistance. I’m responsible for all hiring, training and payroll duties. I moved to a safer building and have surrounded myself with an amazing group of attendants who make it possible for me to regain some of the autonomy that I lost over the years.

Thanks to my newly acquired independence, I completed the Magazine and Web Publishing program at Ryerson University, and in the spring of 2012 I became the web intern at Chatelaine. I found it strange how easy it was to fit into the office. I joked that there must have been an in-service announcement in advance of my arrival, something along the lines of “Okay, everyone, there’s a girl in a wheelchair coming: Remember to act naturally!”

But my disability does make my workday different. To get me to the office for 9:30 a.m., my attendant needs to be at my place by 6:15 a.m. to get me ready. She transfers me into a special shower chair, then spends the next two hours dealing with all aspects of a morning hygiene routine. Afterwards, I transfer back to bed to get dressed. One more transfer has me seated in my power wheelchair and then carefully positioned to maximize comfort and body alignment. Hair and makeup come next, with breaks for breakfast. Once I’m at work, my attendant helps set up at my desk, making sure I can reach my tea, water and many assistive devices.

It’s worth all the effort. My editing job takes the focus away from me, and that’s what I love about it. During the last seven years, in every situation it’s always been about me. Will I be able to get into that particular restaurant? Do I have someone to drive me home? But when I’m editing, I’m the one assisting, the one doing the helping for a change.

Hope by degrees

What hope is there for me and the estimated 86,000 Canadians living with a spinal cord injury? Medical advancements are being made, but there’s still so far to go. I would be lying if I told you I’m not gutted by the fact that my dad is never going to walk me down the aisle; I’ll never hold a niece or nephew or measure my hand against my mom’s as we used to do. Would I trade my human soul for working cyborg parts? In a mechanical heartbeat, yes.

I’ve lost a lot of friends since the accident, certainly not because they’re cruel and unkind, but our lives are just so very different now. I’m often asked — rather incredulously — how it is that I wish to succeed in digital journalism and publishing, yet I don’t even have a Facebook account. Although I think Facebook is an incredibly useful tool for all facets of media, for me personally it’s not a good fit. How best to describe what it’s like lurking on Facebook? It feels as though my lungs are slowly filling with warm water, and I’m drowning. I’m reminded  of how old friends and ex-boyfriends are travelling, getting married, having babies and living out their lives in ways I had assumed I would. To stay afloat and to have a future, I have to let go of my past.

For me, it’s not going to get better, but it will get easier. I’m still as reluctant to write as I was when my brother first told me I could. You see, when there’s just one thing and one thing only that you can do to make your mark in the world and create a career, it can be deadly scary. But I’ll continue working, editing and, yes, even writing. I will strive to make my voice as strong as my body once was.