Part 3

Memories of the operation.

I went over three years without going for a check-up on my spine. Since being diagnosed with scoliosis and Friedreichs Ataxia, I only remember going back to the hospital once before I was operated on.

We lost contact with the hospital, and they lost contact with us. Like I said previously, both myself and my parents had our heads buried in the sand for a couple of years.

For me, in the most part, I was able to do everything my friends did. I wasn’t in pain, I wasn’t bullied about it, and I really didn’t want to go back to the hospital. So, I never had much of a reason to think or complain about my back. For my mum and dad, the trauma of being told their son had Friedreichs Ataxia, meant that they done their best to try and forget about it, and act like nothing had happened. Plus, my mum gave birth to my sister when I was eleven, which was obviously a clear distraction.

The persistent pain didn’t start until I was twelve, when puberty prompted a rapid decline in my spine, and when I started becoming more disgruntled and began mentioning it, my mum phoned the hospital straight away, and we waited for an appointment letter to come through.

*

This time the appointment was at the Royal Infirmary in Edinburgh (RIE). This was where the orthopaedic spinal consultant held his out-patient clinic. I had never seen him before.

I thought the ‘Sick Kids’ hospital was big, but this dwarfed it.

I still remember the first time the hospital came into view of the car windscreen.

The new RIE building had only been built around 5 years prior to my appointment, and the place just looked colossal; like what you’d imagine some futuristic space station to look like, everything being white, aggressive/blunt looking, and totally uncoordinated. It wasn’t exactly welcoming.

Up until that point I hadn’t been too nervous about the appointment, but the butterflies shot into life as I got out the car under the shadow of that monstrosity of a building, and headed towards the main reception with my parents.

For the next few hours it was like a game of musical chairs. One waiting area after another.

First, we were instructed to take a seat in the area at the front of the hospital, then after about twenty minutes a nurse appeared and took us to another area, which was outside the Consultant’s office. Another nurse then called me, and led me along to another area outside x- ray rooms. Once the x-rays were taken, I was asked to go back to the previous waiting area.

In the time it took for the scans to be taken, the area outside the consultant’s room had completely filled up. There wasn’t an empty seat in the house. The place was packed, and everyone was there to see the same doctor. It was going to be a long afternoon, and we were a good thirty minutes early for my appointment, meaning that everyone else in the waiting area was probably to be seen before me.

I was, initially, mesmerised by the comings and goings of the hospital. The constant traffic of activity made it great for people-watching. But there’s only so much people-watching a young boy can do, approximately five to ten minutes, before the boredom sets in.

In the months before that appointment, my spine gave me a constant nagging pain and discomfort even whilst I was sitting. So, having to sit for so long that day was a nightmare – I remember it being agony – and just by being in the hospital was making me feel even worse; I was constantly looking at people who were in pain, were sick, or had something wrong with them, and I was reflecting it back on myself. Add into the mix the searing heat, the horrible white lights, and the windowless waiting areas, I was ready to be admitted into a ward after about twenty minutes.

After about three hours, there was just us and one other family left in the waiting area. I remember us joking with each other, betting on who would be the next to be called out.

Five minutes later a nurse came out of the consultant’s room and read out my name. I was a bit disappointed we weren’t the last ones standing and lost the bet, but as I got up from the chair and turned around, a man appeared in the doorway of the dark office.

Mr Tsirikos was one of the most welcoming, and nicest men I have ever met in my life. He had a smile plastered over his face, and as I walked towards him, he put his arms out and gave me a cuddle. He did the same to my mum, and shook my dad’s hand before we went into his office. He was totally different from any other doctor I had seen. This was the first time I had met him and I felt at complete ease already.

The atmosphere began to change as we took our seats, and one of his assistants shut the door. His big smile and jovial persona faded, and I soon realised why the room was so dark.

On the wall behind him were two x-rays; one that was just taken of me, and one from when I had just been initially diagnosed. They were shocking to look at. I felt the last fragments of energy I had drain away as I stared up at them, in almost awe.

Mr Tsirikos didn’t need to say a thing, the x-rays made it clear what had to happen. The curve in my spine was at an approximate ninety-five-degree angle. I was in disbelief, and I think my parents were too. We knew my situation was getting serious, but this was almost incredulous.

Mr Tsirikos asked me to take my top off and stand in the middle of the room. He asked me to stretch down and attempt to touch my toes, the same exercise my dad had asked me to do when they first noticed the curvature years earlier; and I could easily do it then, but this time it was a different story. I sat back down and put my t-shirt on, and he turned to my parents. “His case is urgent!” he said in a serious and direct tone.

Mr Tsirikos went on to say that he would get me in for the operation in the next couple of weeks.

It took a moment for me to compute what he was saying, but as soon as it did, I blurted out, “Not a chance. That’s not happening!” and I burst out crying. It was just an automatic, defensive response, and I couldn’t stop myself. It was clear as day I had to have an operation, but hearing the actual words coming from the doctor’s mouth that it was happening, and so soon, was something I wasn’t prepared for.

I had been sitting in that hospital for hours in pain, I was drained. I also felt sick/bored/hot/nervous/scared/hungry, and now I was in a dark room surrounded by horrific pictures of the inside of my body and being told I would be going in for a massive operation

in “a couple of weeks”. It was too much to deal with. I was quickly taken out the room by one of the doctor’s colleagues, and into another room down the corridor to calm down. I was distressed, and Mr Tsirikos had a lot of important things to go over with my parents so it was better I wasn’t there.

As I stepped out of the room I looked up and saw the family that I was just laughing with, not even five minutes before, and now I was sobbing my eyes out. It’s amazing how quickly life can change.

There were two nurses sitting in the room I was taken to. I think it was their break room. They looked surprised, and a bit confused when I first went through the door, but the lady that was with me mouthed something to them, and they immediately understood why I was there. They got a seat for me and the other lady went back to Mr Tsirikos’ office.

The nurses started asking me questions and talking to me, trying to take my mind away from whatever it was thinking about. I remember one of the nurses asking “Do you like sports?”, “Yeah, football,” I replied. Neither of them obviously knew anything about football, and they just started talking about the Olympics. I zoned out. If only they had started talking to me about the current affairs at Celtic, then that would’ve got my attention.

The immediate shock died down, and the news of the operation began to resonate with me. It had to happen and I had to accept it. I didn’t have a choice, I thought, as I sat pretending to listen to the two nurses nervously waffling on about the Olympics. The poor nurses were on their break and I was just planted on them, forcing them to think on their feet and try to find common ground with a thirteen-year-old, to try and comfort me.

The next thing I remember was being back in the car with my parents. It was pitch black outside, and as we drove out the car park, I said something along the lines of “I’m still not having the operation”. My dad turned around and glared at me, “Stop being silly. You need to get this done or you’ll die”. So that was that, I thought. I didn’t have a comeback to that one, and I sat in silence for the rest of the journey. We didn’t speak about it when we got home either.

I found out that if my curvature continued to progress in the fashion it was, then it wouldn’t be long until it pierced my lung, which is what my dad was referring to.

So, the fact that I didn’t really have a choice to make, made it easier to accept this ordeal.

I remember waking up the next morning, going down to the kitchen, and hugging my mum. I told her that I had changed my mind, reassuring her that I wanted to have this operation. I didn’t want to make this any harder for my parents than what it already was. As I was under sixteen, Mr Tsirikos would’ve taken my parents decision over mine anyway, but I didn’t want them to have to force or drag me into theatre. I remember feeling so big and courageous acting like this.

Because of how critical my situation was, the operation was scheduled about two weeks after our appointment.

I had no hesitations at all once the news had sunk in, and the quickness of it helped with this, stopping me from having the chance to properly think about it. My immaturity also protected me from worrying and over-thinking; I hadn’t had an operation before, and I didn’t know or pay attention to anyone else that had had one. I didn’t know what was involved in an operation … You got put to sleep, you got fixed, then you went home, and that was it. I was completely innocent to it. I hadn’t a clue about the seriousness of what I was about to go through.

If I had considered the pain or the rehabilitation that’d follow the surgery, I doubt I would’ve accepted it quite so easily.

*

My Mum had told me that I’d be off school for quite a while after my operation – I had no

idea why this was the case, but I didn’t want to question her on it and give her the opportunity to change her mind – so, I spent the weekend prior to going into hospital with my friends as I wouldn’t be seeing them for a while. This helped keep my mind clear in those crucial few days leading up to D-day.

The only time I thought of, and spoke about the operation was when my friend’s grandparents were giving me a lift home on the Sunday evening. They asked about what was happening, wished me good luck, and told me how brave I was. I had been receiving a lot of praise on my courage and I loved getting lauded on it, and this time it felt even better knowing my pal was sitting quietly in the car beside me. It brought to life the alpha-male ego I had once had when I was known as ‘Chopper’. It put me in high spirits as I was dropped off at home.

I woke up feeling fresh and relaxed on the Tuesday morning. I was actually weirdly excited getting all my things packed. It felt like I was getting ready to go to a hotel. It didn’t feel real. Even once we got to the hospital, although I was on a ward, I was given my own secluded room for the night. The en-suite was a commode, and there were loads of tubes coming out of the wall behind the bed, but the room still sheltered me from the rest of the ward. Once the door was shut it didn’t feel like I was in a hospital, or what I’d imagine being in one to be

like. I wasn’t sick, bed-ridden, in pain, or restricted to staying in my room.

But then as soon as I opened the door and walked out onto the open ward, my mind was brought back down to earth with regards to where I was. It was such a strange day, and I didn’t know what to feel.

My parents obviously did all they could do to keep my mind occupied and I was at the complete centre of their attention, which I loved as always, stopping me from settling for more than five minutes.

I remember having to go for more x-rays, and then being introduced to a few people like the anaesthetist and physiotherapist – I don’t remember anything they said to me – before finally being told I had the rest of the evening free to myself.

I had begun fasting but it didn’t really bother me, my focus was only on trying to find somewhere to watch the football later that night. Celtic were playing against Manchester United in the Champions League, and I had to see it.

One of the flats in the grounds of the hospital had been transformed into a space for older children and teenagers to hangout, and was kitted out with loads of cool stuff like plasma TVs, Playstations etc. I don’t actually remember anything else that was in the flat, all I cared about was getting to see the game, and the game is practically all I can reminisce about from that night. Celtic scored early on, before Manchester United equalized in the final minutes. The game finished 1-1. The Hoops hadn’t won but they had still drawn against one of the best teams in the world, and I was proud of them. I got into my bed relatively content that night.

As I lay ready to go to sleep, I remember my mum reading out loud one of the good luck cards I received.

I’ll never forget it, well I’ve forgotten the precise words in the message, but I’ll never forget that moment, the way it made me feel, or the person who wrote it. Soon I’d be going through a ten-hour operation; my back cut open from top to bottom, two metal rods put either side of my spine to correct the curvature, over twenty screws drilled in to keep them in place, and then bone graft taken from my hip and used to further solidify and fuse my spine and the metal rods together. Her kind message helped keep me settled, and allowed me to drift off and get a good sleep in those last few hours. I’ll always be thankful for that – never undervalue a small act of kindness.

In the morning, I remember sitting at the bay window in my room. I felt numb. I wasn’t scared, nervous, or even anxious, but I wasn’t happy either. I was emotionless. Like I had gone into a sort-of autopilot. I had no power anymore, no control. I could’ve died in the procedure and there was nothing I could do to stop it. I had sacrificed myself to Mr Tsirikos, and my life was in his hands.

Looking back, it’s clear that I was in a state of shock, and certain parts of my brain seemed to shut down going through this traumatic event.

The window I was staring out of overlooked the carpark at the main entrance of the hospital. I sat and watched a few doctors and nurses arriving, parking their cars up and walking into the building to begin their shifts. A dark-purple BMW was the next car to pull up.

Out stepped Mr Tsirikos. I sat in silence as I gazed at him. He opened one of the back doors and pulled out a briefcase, before locking it and turning away, calmly walking towards the doors of the hospital. I can’t describe what that was like. Sitting watching that man who had so much responsibility over me. This was a huge, life-changing moment for my family and me, and he was the architect. I was able to spectate him without him knowing. I could see the real him before he got to work, no bravado, no big smiles or hugs. He looked completely normal but what was going through his head? What was his mood like? Hopefully he’s had a good morning with his family. Hopefully he’s not been arguing with his wife, I thought.

Considering how bad my curve was, for this operation to be a success, he had to be at ease to allow him to be completely focused. All of my trust was with him.

Henrik Larsson was good, but this is what a real superhero looked like.

Not long after Mr Tsirikos had entered the hospital, there was a knock at the door and a nurse came in. She handed me some medication, whilst two other nurses wheeled a bed into the room. The tablets were to basically comatose me, and not long after I took them, I remember jumping up and lying down on the bed that the nurses had brought in and shutting my eyes.

My dad said I was still conscious and communicated with them until I was taken down to theatre but my memory is completely blank.

The operation reduced my curve from about ninety-five degrees to twenty-six degrees. It took ten hours.

My curvature was so bad, that it was impossible for it to be recovered any more than what Mr Tsirikos had done. He told my parents that he thought the operation was a huge success. My parents were delighted. I was taken straight up to the ICU after the surgery where I spent the second of my twelve/thirteen-night stay in the Royal Hospital for Sick Children in Edinburgh.

I have no idea how long after the operation it was, but I do remember becoming conscious for the first time; it must only have been for a few seconds, if that.

I had been pumped up with so much morphine that I had no idea what was going on or where I was, and even thinking about opening my eyes was out of the question. I just remember trying to mouth out the word water – I felt like I hadn’t had a drink before in my life, I’ll never forget that feeling. However, unknown to me, my sister was by my side holding my hand watching me in a deep, peaceful sleep, and without any warning to her, in my true

demanding and bossy fashion I shouted out “WATER”. A straw was put in my mouth and I fell back asleep. My sister shat herself, burst out crying and ran out the room petrified.

Nothing much happened in the following days apart from being taken out of the ICU and down to the ward. I was slowly weaned off morphine as I slept.

My stay in the hospital is a bit of a blur to be honest. But I remember a few moments that I can use to piece things together. The first of which was the physiotherapist sitting me up, and helping me transfer to the seat beside my bed. It was horrible. I was desperate to lie back down immediately. As the heavy drugs made their way out of my system, the pain entered it, and I couldn’t stand the energetic physiotherapist.

The next day she came ‘bouncing’ into my room and had me standing up and taking small steps in the ward. Instead of sitting back down on a seat afterwards, I insisted on lying down on the bed. So, one of the nurses took the remote control for my bed and raised the mattress into a sitting position, and then put the remote down and out of my reach. I was absolutely raging. My tolerance for the nurses grew shorter and shorter as I gradually felt more pain in each passing day. The same went for my attitude with other patients on the ward as well.

The girl next to me had a severe learning disability and screamed/made loud noises constantly. She also had a portable DVD player that she didn’t actually watch, but left on all the time. It rang out the theme tune of ‘Charlie and Lola’ on repeat, as it sat on the menu screen of the DVD all day. I couldn’t take it.

*

A few more days passed, and I had become a bit more competent on my feet.

I remember slowly walking to the toilet one night with my mum. Whilst in the toilet I heard a massive thump. I opened the door, and my mum was laid out flat on the bathroom floor.

There was nothing I could do apart from shout for help, I couldn’t even bend down to see if she was ok. I remember feeling so confused; it was the middle of the night so I was still half-

asleep and drugged up, I had no idea what was going on. I heard my mum’s voice as I shuffled back to my bed with the help of one of the nurses, so I knew she wasn’t dead!

I woke up the next morning in an isolated room, and my mum wasn’t beside me. I began to get flashbacks from what happened the night before, and pressed the buzzer next to my bed to speak to a nurse and find out what had actually gone on, and if my mum was ok. My mum had fainted and now wasn’t allowed back on the ward in case she had a sickness bug. I had been put into an isolated room in case I also had a bug. My mum wasn’t sick, she was just completely drained of energy. But she was forced to go home, and the nurse also gave me a phone to call my family.

My dad answered. He was in quite a jovial mood, he knew what had happened and he had already picked my mum up and taken her home. He found it quite funny what had happened, my mum was just mortified. I was devastated though. I needed a familiar face to be with me, I couldn’t see out my hospital stay by myself. I felt so alone and scared lying in that dreary room. I’ll never forget that horrible sense of vulnerability.

My dad told me my gran was going to come over in a few hours and stay with me for a couple of days, which I was really thankful for. If she didn’t, I would’ve struggled by myself.

After that I desperately tried to push myself with the physio, staying out of bed as much as possible, trying to break the pain barrier. I needed to get home and this was the only way to do it.

I pushed the distance I was able to walk with the physio, and she took me out of the ward and along the adjoining corridor. One day when we did this, we turned a corner at the end of the corridor and I had to go up and down a small staircase. She tested me doing this for a few days, and she said I wouldn’t be allowed home until I could do this steadily.

I felt fine but I could tell she wasn’t convinced watching me. I remember mentioning my ‘nerve problem’ to her as we walked back to the ward one day. Hoping to blag my way home, just as my mum had blagged the police officer a couple of years earlier about me having a ‘disability’. It worked just as it worked for my mum and I went home shortly after.

About a week after being home we had to make an emergency appointment with Mr Tsirikos.

At the very top of my back, the scar tissue had become infected. The same night as my mum fainted, one of the nurses put me in the shower, which as it turned out, was too early. Some of the water had got through the dressings on my back and into the scar tissue. It was uncomfortable from then on and it gradually got worse.

Mr Tsirikos said a second operation was needed. I was absolutely fuming, crying my eyes out, and cursing the ‘stupid’ nurses, but once again I had no option but to go through with it. If the infection continued to spread, the rods in my back would need to be taken out and re- done.

The infected part of the scar was opened up, cleaned out, and tightened back up, all in about thirty minutes.

My dad was sitting next to me when I regained consciousness. I was able to open my eyes with ease this time. We started talking straight away. I felt a little sore but more just dozy. Everything was the complete opposite from the previous operation. My dad had obviously

come straight from his work with what he was wearing; shirt, tie, smart shoes – not ideal attire for sleeping in a hospital. He looked uncomfortable and I felt a bit guilty, so later that night when we overheard the nurses talking about how the ward was overcrowded and there was a bed shortage, we volunteered to go. I would’ve been getting discharged the following morning anyway so it wasn’t a big deal.

I had to lie to the nurses first by telling them I had been to the toilet since I woke up, but then we were out the door within five minutes. I remember going over the Forth Road Bridge on our way home thinking about how I had been in theatre a matter of hours ago, still a little spaced out from the drugs going through my system. My hospital stays were over now though and I was thankful both operations had been successes. I felt so content, I was safe with my dad. I was going home.

*

I seriously underestimated the amount of recuperating involved in hospital, and then when I returned home – I soon understood why my mum had told me I’d be off school for so long.

I was no longer under the responsibility of a physiotherapist, and neither my parents nor I had anyone to give us guidance or advice on how to best manage my long-term, physical recovery.

I used to go on walks during the day with my mum. My little sister was still in a pram so I was able to hold onto this when we were out. This inconspicuous walking aid made it a lot safer and really helped me push my recovery on. I also walked up and down the street with my dad when he got home from work, holding onto his arm for support. To begin with I was only able to do a 50-yard distance, but this gradually increased over time.

My legs were still really weak but I slowly but surely got there.

Generally, my back was still pretty sore, but my lower back was the biggest issue. The tightness I felt in it was unbearable when I was standing or walking too long. I actually got a bit hooked on one of the pain killers given to me by the hospital. I’d look forward to taking it every day. It was like a syrup I’d squirt into my mouth with a syringe, once in the morning, just before I lay down to watch Homes under the Hammer, and the second time just before I went to bed at night. It took about fifteen minutes for it to kick in, but once it did it the pain and tightness just deserted my body. I can only describe it as being like the scene at the beginning of Trainspotting, where Ewan McGregor is falling through, and is swallowed up by his mattress. I loved it. But the nurses were a bit startled when they found I was still taking the drug at a follow-up appointment after the second operation, and my parents were ordered to wean me off it. I was gutted, but I managed to come off it a couple of weeks after.

As Christmas neared, the pain began to ease, the tightness shifted a little, and my legs and back muscles continued to strengthen.

The three months I was off school were tough. The longer I was absent, the more I missed my pals and actually wanted to get back to school. Thankfully social media didn’t really exist

then, so I wasn’t constantly looking at what my friends were up to, and getting fed up that I wasn’t able to do the same.

By the time I returned to school, there was a big difference in my gait and posture. I was so much taller, I had grown four inches from having the first operation, and I was poker straight. It looked like I had an ironing board strapped to my back. Although I still had a curve, you couldn’t notice it.

My walking continued to improve and every week it got stronger, and I could walk further, but the gains stopped and the progress did eventually plateau. I still wasn’t normal. I was aware of that. But for some reason I never asked why, I just accepted it.

It’s bizarre that I never said anything to my parents after my operation, but I didn’t. It’s like in some subconscious way I knew there was a hidden, sinister truth. I wasn’t stupid. But the

conscious part of my brain didn’t want to know it, and once I got back to school there were so many things distracting it.

People had always asked about my back before the operation, and even more so after it, and so it also continued to deflect my attention away from the underlying issues.

At the time, I thought, perhaps my gait would get better if I just gave it more time. The overnight increase in height may be a reason why I was still off balance. My brain had to get used to suddenly being that bit taller, I thought. Also, I didn’t think my weight helped either, I was too light on my feet to stay steady. I needed to bulk up.

It’s amazing looking back, thinking about the excuses I made up in my head that stopped me from focusing on the truth.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s