The Surgeries (2003-2004)
I knew when I started writing this that each post would become harder and harder to write; but, I also think some of the hardest and most vulnerable things you can share may just have the most impact, and maybe even help someone else who is going through a scary, unsure time in their lives.
I have always kept conversations about my scoliosis, and my spinal fusion operations to the bare minimum details.
I am fully comfortable admitting that even the thought of writing about it in detail has my nerves shot.
Do not get me wrong, I owe my life to my family and the teams of medical professionals who saved my life; but, the things I endured in the process are the things nightmares beyond imagination are made of.
That, even as I write this, my body aches a little more remembering the trauma it has endured.
One thing I have gotten great at is managing my pain, at times, almost to the point I can forget it is there; but, it is always… there.
I will also say there really is only so much I can go deep in the details. One thing I can certainly share is that the human brain is really good at blocking out truly traumatic experiences.
With that in mind, I will share with you all that I can remember.
First, remember that my spinal curve was labeled as an “S Curve” at this point, an S so drastic it was going to cause my rib cage to puncture my lungs- this was the main reason the doctors did not have the option to wait until I was eighteen as they preferred, and instead commenced the operations when I was only eleven.
The operations would be carried out at the Montreal Children's hospital- hundreds of kilometres away from where I knew, from my home.
For my own sanity, I am just going to quickly outline in simple terms what each of these first two operations involved.
The first operation was eighteen hours, were they went in and deflated my lungs, and removed part of my rib cage, along with a few of my spinal discs, before putting me in halo traction (they drilled nails in to my skull and used a halo to elongate my spine with weights for one week before fusing it together).
That week was what pure hell was made of.
Please, imagine if you will, being tormented on a stretching rack with part of your spine missing.
Now, imagine that at eleven years old.
They also shaved my right shoulder blade.
I had so many tubes in my body, and will never forget being in the intensive care unit with a breathing tube down my throat, and being awake as the nurses pulled it out of me.
I vomited, and the pain was like someone had ripped the inside of my throat out.
The pain was so much I found myself wishing I had died on the operating table.
My mom shared with me years later that my surgeon and his team were amazed at how well a little man like myself was handling the situation. I did not kick or scream the first time, or the second time they brought me in for my operations. I just quietly cried.
The truth was, I was unable to process all of what was happening to me.
From being poked at and tested my entire life, to being ripped open and broken to pieces, only to have them put me back together a week later.
The worst part was the last few days before the second operation, where they would move me to a wheelchair that held me sitting up by the screws drilled into my skull.
I could not stop screaming, and I called it the chair from hell.
The second surgery happened one week later, where they put in the hardware to fuse my spine. I do not like to think much about this, even to this day. It is essentially two rods on either side of my spine, with a whole bunch of screws connecting them at the center - the center being my spine.
They then connected almost clothing hanger type rods to each of my shoulders to align them as well.
The rod in my spine goes from my belly button, to just above my shoulders; partially into my neck. Meaning I would never be able to bend again.
And so, after another twenty hour operation I spent another week in the ICU, unable to eat any solid food, and in fact, not even crushed ice until a week after the second go.
I will forever try to remember as little as possible about those painful and sleepless nights listening to other children crying in pain.
I can never say thank you enough to my mom, who stayed with me every second she could, sleeping on an uncomfortable hospital seat every night so that I wouldn’t feel more scared than I already did. For giving me her strength, so that I could survive a horror no child should ever have to face.
I spent over a month healing, being tested and injected with too many different things to count. My entire body was bruised, and I was also going to have to learn how to walk again.
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Three weeks after my operations I started physiotherapy, and I will tell you I had never felt more defeated and powerless in my life as I survived off of IV drips and had to somehow muster up enough strength to overcome the immense pain and start walking again.
The worst night was the night I managed to sleep and didn’t press my morphine button enough, only to wake up in such pure unadulterated fucking agony that my screams were apparently heard throughout the neighbouring two levels of the children's hospital as I begged the nurses to just kill me already.
Those nurses were and always will be considered heroes to me, and I will forever be grateful to people like them, who help people like me.
This was the scariest time of my life.
It also gave me an insight about how precious life was.
I’ll never forget being rolled into the operating room, holding my teddy bear and trying not to cry; and seeing another little boy going in for his own surgery.
We locked eyes in a knowing way that only we could ever understand. Sadly, that little boy died on the operating table.
I did not.
My one recovery room happened to be the last in the wing, and on the other side of the door was a ward I didn’t quite understand at the time, the suicide ward.
I will always cherish the visits from one of the volunteers after one of his wards, a young teenage girl, woke me one night. She had escaped the ward and apparently saw me, a totally broken little boy, and after that, she would come every few days to sit in silence and colour beside me.
And how could I possibly forget this angel of a baby girl from Lebanon, born without her throat connected to her stomach. A little girl who had also just had a life saving operation at the age of two.
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Seeing that I wasn’t the only person going through unimaginable pain, with all odds stacked against them, and still surviving, gave me an insight most people probably don’t have until they are much older.
That life, all life, is so very precious. And that people can overcome amazing odds.
That, being broken doesn't mean you are weak- in fact, it makes you stronger than most people could ever fathom. In that being shattered in to pieces, you have the opportunity to put yourself back together again, even more strong, beautiful, and worthy than before.
For every little soul that died on the operating table, there was another, like me, who made it to the other side.
So I decided to take all the fear I had, and try my best to channel it into something positive. I decided that since I was given this time on earth, I needed to make the most of every second.
I needed to experience all of it.
That was all I knew.
Little did I know, I was going to experience more adventure, love, and even loss than I ever thought possible.
That, just as that little boy told himself with no such certainty, would build a life story that spans the globe, with insight that can only come from choosing to do the thing that scares you the most.
From hating the body I was given, to embracing it; because, there is something beautiful in being so rare.
I do know one thing, that I exist the way I am, and you exist the way you are for a reason.
I also know that blending in just isn't for me, and that not being able to blend in for years has made me capable of adapting to far more than most people- and in being able to adapt, I am able to experience life in ways most would find impossible.
Let me tell you, getting through the other side of fear was never easy. Just as recovering from my operations wouldn’t.
Just as needing to go for a third much more minor surgery with no warning after only being home for a month so that the surgeon could make one more tweak, followed by another month in the hospital.
Followed by eight years of healing.
Five years of not even being able to jump in a pool of water.
Not being able to feel my own back when sitting for months, and never fully for years after.
I will honestly say, it broke me.
But, it also set me free in ways I never would’ve been without having had this experience, and learning these little, big, very important lessons along the way.
The most important lesson I learned was being comfortable in my own body- and learning to be kind to myself.
To always remember, that being one in a million is nothing to be ashamed of- it is something to be so, so very proud of.
Side note: I also owe so much to Lizzie McGuire, because I lost count of the amount of times I watched that movie in the hospital high as a kite on morphine, and the comfort the story of a misfit girl gave a misfit boy during one of the hardest times in his life. Getting to meet Hilary in 2005 was totally had this gay kid DECEASED. Honestly, she was even nicer in person than on television.
This will not be all that I share about my scoliosis; but, this is all I have in me to share at this moment.
I feel that body positivity deserves its own chapter. So, tune in to that tomorrow for a special Sunday post.