That’s how I roll

(Submitted)
(Submitted)

(This article was written by Adam Wright for a journalistic writing class and  published in the Aquinian in 2010.)

I woke up in the intensive care unit after more than 10 hours in the operating room. I’m no stranger to procedures – I’ve had over 40 surgeries in my life – but this one was the biggest and riskiest.

The week before, I’d been rushed to the Montreal Children’s Hospital from my home in Bathurst. Upon arrival, they took blood tests and told us the startling news. My CO2 was up to 120 and my ribs were constricting my heart and lungs, causing them to fail.

I couldn’t believe my ears; I was going into heart and lung failure. They would have to do something new, and do it fast. The first step was to give my lungs and heart a rest by putting me on a respirator. The intubation was done while I was awake.

It was a week later that they rolled me into the operating room. When I awoke after the 10-hour, life-threatening surgery, I looked around – groggy from the anesthesia and the pain meds, and full of tubes. A nurse walks over and asks: “How are you feeling? Are you in pain?”

I nod a bit. She asks me “Where?”

I can’t speak with the tube down my throat, so I wrote groggily on a pad of paper. She reads it out.

“My catheter.”

As I grin, everyone bursts into laughter. My family shook their heads. When things look the worst, I come up with something to brighten the mood. Sure, my body was sore, but why complain about the obvious. Besides, that catheter wasn’t exactly pleasant.

***

Living with a disability, you have to have a sense of humour. Doctors had little hope I would survive two months past birth. They’ve never seen a condition like mine. Even the I.W.K in Halifax couldn’t help. But days turned into months, and I was still alive.

My first trip to Montreal happened when I was just three months old. The Shriners Hospital welcomed me with arms wide open. Later on, I was finally diagnosed: This rare bone and muscle disorder would carry my name, the Adam Wright syndrome. My muscles and bones were constricted at birth. As I grew, things got tighter, which required corrective surgery. Muscles were released in my feet, knees, hips, neck, wrists and more.

To this day, it’s the only case in the world.

My biggest surgeries were the spinal fusion to correct my scoliosis, which took 14 hours, and this one, on my chest.

For the weeks that followed, I remained in intensive care, the breathing tube still down my throat. With no television, and practically no food, it was hell. Not to mention the lack of caffeine! I counted the days since my last Tim Hortons.

“Can you put some coffee through this tube?” I would write. They thought I was joking – I wasn’t.

One of the worst parts of being in a children’s hospital as an older patient is the clowns. Now don’t get me wrong, I respect what they do, but when a patient says no clowns, it means no clowns.

It isn’t the first time I’ve been mistaken for a younger kid. One time when I was in the tenth grade, I went to this restaurant with Tammy, my older sister. When we get there, the waitress sets us up at a table. She gives Tammy a menu, but not one for me. Then she kneels down to my level, and with a patronizing voice, she asks, “Do you want a colouring book?”

(Submitted)
(Submitted)

Now, I could’ve gotten offended, but I smirked, looked at her and said, “No, but I’ll have a beer!”

The waitress didn’t make eye contact the rest of the dinner. Poor girl!

I would have killed for a dinner – even from that waitress – after a month in intensive care. Living on Popsicles and apple juice has its limits.

After nearly six weeks, the breathing tube finally came out. Although still on a ventilator mask, it was good to be able to talk again. The first words out of my mouth were, “Tim Hortons coffee please!”

Everyone laughed.

I wasn’t joking.

***

Then came the day I finally saw what they’d done to me. Holding a mirror to my chest, I was getting my first look at this groundbreaking procedure. The nurse slowly took off the bandages. When the bandages were off, I was in state of shock.

Because my ribs were compromising my inner organs, they took out some of my ribs and sternum. I saw my heart beating over my skin. I slowly put my fingers on it, I couldn’t believe it. Feeling my heartbeat under my fingers was scary at first, but it soon became amazing. Who else can do that?

Seeing and feeling your own heart.

After two months, I was out of intensive care, but still in the hospital. Two months away from your home, it starts to get to you. Back home, my little sister Isabella was at school. Mom arranged for her to fly to Montreal; it was a surprise.

When I saw her come in the room, I immediately broke down in tears. I hugged and kissed her. I can’t imagine how much she was worrying about me when I was in Montreal.

It broke my heart.

***

There are positives to being in a wheelchair. Great parking, no need to buy shoes every year, and I don’t walk up flights of stairs.

People treat you differently. It can be a double-edged sword, as some tend to be too nice, almost condescending. I don’t take advantage of that often, but it does come in handy.

Like one summer, before a trip to Moncton, I went to Toys’R’Us to buy a new water gun. I ended up buying the biggest, most expensive one.

I had a blast with it in Moncton, but after the trip, I didn’t really want it anymore. I went back to Toys’R’Us, put the watergun on the counter with the receipt and said, “I would like to return this.”

The clerk looks at me and asks if there was a problem with it. I look down with a frown and lift my hands up.

“With my poor little hands, I can’t pull the trigger,” I said, in a broken voice. I slowly looked up, and she was already in the cash register getting my refund. I thanked her and stormed out before breaking down laughing.

OK, I know, it was horrible of me! But it’s not like I use the pity card often.

***

Looking back on this surgery, I still get emotional. It was one of the most trying times of my life. I was so close to the end, and many times, I just wanted to give up. Getting through it would’ve been impossible without my sense of humour.

It’s how I live my life. Sure, I may seem quiet, but folks who know me call me a sarcastic smart-ass. It’s really a big compliment.

The campus first saw that side of me during the faculty strike/lock-out. During the student march, I had a sign that said, “This strike has crippled my education.”

I thought it was hilarious, and the best part was the reactions. It got a lot of laughs, although some were not sure if they should. I say to them, “yes it is OK to laugh.” That’s my point.

That’s how I roll.

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