Part 1

Memories before the diagnosis.

It was Christmas and I was seven when my mother noticed something wrong with me. We were making our final visit up to Scotland before moving back up permanently. All the family were celebrating at my grandparents’ house, my gran had bought a novelty, plastic,

champagne set for all the younger ones to use and pretend they were drinking alcohol like the adults.

We’d all give our best impressions of my great aunty Nell, sticking out our pinkie finger and pretending we were posh. Running back through to the kitchen to get a refill, my mum noticed that whilst my champagne flute was being refilled with lemonade, I was struggling to hold it still. I needed to use both my hands to keep it balanced. I don’t remember what my

mum said, and she doesn’t either. She probably just got a bit annoyed at me as it looked like I wasn’t really paying attention.

I was a young boy high off fizzy juice. It was Christmas day, and I was surrounded by my cousins – no wonder I couldn’t stand still! It got brushed under the carpet. But my mum always remembers it. Something about it stuck in her head. If I ask her now what she thinks was the first sign of Friedreichs Ataxia that she saw in me, she says it was that incident.

 What is Friedreich’s Ataxia?

Most individuals have onset of symptoms of FA between the ages of 5 and 18 years. Adult or late onset FA is less common, <25% of diagnosed individuals, and can occur anytime during adulthood.

The Signs & Symptoms of Friedreich’s Ataxia are:

 ·     loss of coordination (ataxia) in the arms and legs

 ·     fatigue – energy deprivation and muscle loss

 ·     vision impairment, hearing loss, and slurred speech

 ·     aggressive scoliosis (curvature of the spine)

 ·     diabetes mellitus (insulin – dependent, in most cases)

 ·     serious heart conditions, including hypertrophic cardiomyopathy and arrythmias

These symptoms are not present in all individuals with FA, for example diabetes occurs in about 10-20% of individuals with FA. The mental capabilities of people with Friedreich’s ataxia remain completely intact. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.

http://curefa.org/whatis

*

My dad was in the army when I was a toddler; he was based in England, and when he left, he got a job with Newcastle council. We stayed in a village called Cramlington, just outside Newcastle.

I come from a large family and I remember my gran, aunties, and cousins all coming down to visit from time to time. My mum grew up with six siblings, and my dad with two, so we weren’t short of visitors, and whenever my dad got time off work, we’d travel up to see them.

My mum had lost one of her brothers shortly after I was born, and a few years later she lost one of her sisters. At the time, my gran (dad’s mum) was extremely unwell, and it was the last straw for my parents. They started making plans to move back up to Scotland permanently.

We moved back up to sunny Scotland in the summer holidays. My parents bought a house in the village where my mum was brought up, and where most of her side of the family still stayed.

*

I attended Shanklea Primary School for a couple of years while we lived in Cramlington.

There was a boy in my class who used an electric wheelchair. The only reason I remember him being in a wheelchair is because during lunch when I was playing football with my classmates, he joined in one day. Instead of passing the ball to his feet we kicked it off the sides of his wheels to involve him. That day is the only memory I have of him using a wheelchair, showing just how much, I didn’t think anything of it or care about it.

Maybe it was just selfishness, or maybe it was just because I didn’t see him any differently to others in my class. But I never once thought about how he must be feeling.

I could see that he was in a wheelchair but that didn’t mean anything to me. I knew he couldn’t get out the chair, but I never thought of there being something wrong. I hadn’t heard of the word ‘disabled’.

With the experiences I’ve had since then, I always feel a bit ashamed that I never acted differently with him, or made more of an effort. ‘The disabled world’ has definitely taught me to be far less selfish or ignorant.

It would be interesting to hear that boy’s perspective and memories of growing up and using a chair from a young age.

The education about disabilities clearly wasn’t there when I was younger, and I’m still not sure if it is there now – I hope it is. If I had an understanding when I was at school, then I’d have had more of an inclination to make an effort with that that boy.

At that age I had no idea what the future held for me, but as it happens that sort of education would’ve been invaluable for me personally as well.

As you’ll read, growing up I was desperate not to be seen as different, and this coupled with the fact I had very little knowledge of the word ‘disability’, may have resulted in my mental health being impacted far more than necessary.

I’m trying to write this to raise awareness of a rare condition, but if a good understanding of disabilities and how they affect people in general isn’t there, then it makes this task almost impossible.

Education is the key.

*

I’ll never forget my first day at Thornton Primary School.

I was greeted at the reception of the school by the head teacher and she gave me a quick tour of the building, before taking me to my class and introducing me to everyone. My class were scheduled to do P.E. that morning and by the time the head teacher took me to the class everyone was already changed and standing in a regimented line at the front of the classroom. The teacher quickly introduced herself and asked me to go and get changed.

Before I had the chance to speak to any of my new classmates, I had to get changed in front of them! I remember trying to hide as much as I could, crouching down behind the chair at the desk I had been given. There was a line of eight/nine-year-old eyes staring at me from a few feet away. A couple of sniggers burst out when I took my shirt off. I found out later from people who would soon be my best friends, just how hilarious it was that I wore a vest.

After P.E. it was breaktime.

I remember heading out to the playground with a big group of boys huddled around me like I was a celebrity, all asking me questions about my footballing ability. The first time the ball came to me, I remember trying to hit as hard it as I could in the direction of the shelter – the makeshift goals. Whilst at the same time trying not to grip my hands too tight and preserve the packet of crisps I was eating. As I took the shot, I felt myself falling back. I lost my balance and ended up lying on the ground, hitting the back of my head off the concrete.

Christ, what a start at my new school, I thought. First having to get changed in front of everyone, and then falling when you’re doing your best to impress your new class-mates playing football. I heard a cheer, and was helped back up almost as soon as I had fallen. “BAR AND IN, BAR AND IN!” one of the boys kept repeating excitedly. Although I had fallen, the shot had gone in. Zero to hero. I was lauded by the boys as the school bell rang again signalling the end of our break.

When we were walking back to the classroom, we passed the janitor, and I was displayed to him like a trophy my new pals had just won. “This is our new player”, one said. “He’s amazing, he just scored a bar and in”, declared another. From that moment on I had no problems settling in.

Friedreichs Ataxia may have been the reason I fell over that day, I don’t know. I doubt it. It’s more likely that the balancing act between the ball coming to me unexpectedly, wanting to hit an impressive shot, not wanting to jeopardise my crisps, and generally being a bit nervous was the issue.

Looking back at it though, it was about seven/eight months after my mum noticed my clumsy and unsteady hands. Maybe if the memory of falling over hadn’t been drowned out by scoring, and I remembered to tell my parents about it when I got home that day, they might have taken me to the doctors to query about my clumsiness.

It wasn’t long until they had to take me to the doctors for another reason.

*

One night in February the following year, my family were all getting ready for my great aunty Nell’s 90th surprise birthday party. A function room had been hired out in the local pub. I know it was a 90th birthday party, but I was really excited for it; all my aunts, uncles, and cousins would be there. Nights like this were why my parents wanted to move back up to Scotland, for the family to be able to celebrate together and stay close.

I remember my mum coming in my room, laying an outfit out on my bed for me to put on and shouting at me to get off the PlayStation. “Get that thing turned off and get changed. We’re going to be late!” she said. I quickly put the pair of jeans on that she had laid out, and ran through to the bathroom to brush my teeth – and put too much gel in my hair. I stood over the sink, trying not to let any toothpaste drop onto my jeans, and brushed my teeth/washed my face.

There was a lot of hustle and bustle going on in the hall outside the bathroom. My mum was walking up and down it continuously. The tone of her footsteps kept changing, first it was high heels and then something that made more of a thud than a clink. I had left the bathroom door open and just as I was finishing gargling some mouthwash, I heard her footsteps come to a halt just outside the bathroom.

“Connor stand up straight. Turn that way. David come here,” she said.

I stood as straight as I could and turned to face her. “What is it?” I asked. My dad walked into the bathroom. “Turn around and do it again, let your dad see”, my mum said without answering my question. My dad then asked me to lean over and touch my toes. “What is it?!” I said demandingly. I could tell they were concerned by their expressions. My dad started pressing in at my spine with his hands, “Does that hurt? Does it hurt here … what about here?”. “No,” I replied, “what’s wrong?” hoping for an answer this time.

“There’s a bit of your spine that isn’t straight. If it isn’t sore it shouldn’t be anything to worry about. We’ll just need to keep an eye on it,” my dad said. “Yeah don’t worry. I’ll phone up and get you an appointment at the doctor’s next week, just to let him have a look. It’ll be fine,” my mum said comfortingly. “Now go and get your shirt on. I don’t want us being the last ones at this party,” she said.

I could feel their confused eyes burning holes in my back, as they stared at me walking back through to my room. I put my shirt and shoes on, sprayed some aftershave that I had just got for Christmas, and ran out to the car.

Once I got to the party, I completely forgot all about what had just gone on. Between playing pool and knee sliding on the dancefloor with my cousins, I was a carefree eight-year-old. I doubt my parents would have been able to forget about it quite so easily. My thoughts about it were only reignited when my mum collected me from school one morning the following week for an appointment with the local GP.

I remember standing feeling silly and cold in the doctor’s room. He had asked me to take my shoes, jumper, and shirt off, and he was now doing the exact same checks as what my dad had done a few nights ago. He asked me to walk towards him and away from him. I had no

idea what he was gaining from this, but he was obviously observing my gait. He started talking to my mum as I got dressed again. I was sitting on the floor putting my shoes on and immediately after the doctor had stopped speaking, I looked up at my mum and asked her what was happening. “You’re going to get an x-ray at the hospital in Edinburgh. We need to get a better look at your spine,” she said. “Not a chance,” I replied. I didn’t even really know what an x-ray was, if it would hurt or not, and the thought of having to go to a hospital was just a no-go.

According to my mum I had never been great when it came to going to see doctors etc, as I never took pain very well, and I lost all trust when I was four/five-years-old and had to get jabs … the nurse gave me a sticker at the end. I threw it on the floor immediately, stood on it, scrunched it about with my trainers, and ran out the building. I don’t remember ever having to go to the doctor’s after that. So, my fear just blossomed from there.

To me hospitals were just your local doctor’s surgery on a grander scale – full of needles and things that could hurt you. I couldn’t think of anything worse. My mum and dad therefore had to do a lot of comfort speeches in order to convince me to have this x-ray done. “Doctors and nurses are there to help you and make you feel better. They’re not there to hurt you,” my dad would say. “I suppose that makes sense, but what about the x-ray, will it hurt?” I would

mumble back. “You won’t feel anything getting an x-ray, Connor. Stop being silly. All it’s like is standing in front of a big camera and getting your picture taken. You won’t even know it has happened,” he would reply.

We had the same conversation again and again for a few weeks until it was D-Day at

Edinburgh’s Royal Hospital for Sick Children. My dad never slipped up once or hesitated in his answers. I believed him and agreed to go to the appointment.

This place was massive. Corridors in every direction, some leading to stairwells, others towards different departments and different wards. What a place this would be for a game of hide-and-seek, I thought. There were doors on every wall of every corridor. What lay behind those doors? The unknown was making me feel a bit anxious, my stomach was churning.

We finally reached the reception, and we were told to take a seat in a certain waiting area. “Down that corridor and to your right,” the lady said with a smile. I felt fine when I arrived at the hospital, but trying to navigate its winding corridors, steep staircases, and in the energy sapping heat had left me feeling so dizzy and drained – stepping into the hospital was a bit like stepping out of a plane in Spain during the height of summer.

I’ve been for that many x-rays since my first, that I can’t single the memory out. I just remember going to the reception once it was over and then being told to sit, go to another waiting area. What’s going on now? I thought.

A nurse then appeared from another corridor behind me, read out my name, and led my parents and me into her room. She asked me to get up on the bed and then tied something around my arm. Alarm bells were ringing. I asked her what she was doing. “I just need to

take wee bit blood for the doctor to look at, it won’t hurt, you’ll only feel a scratch,” the nurse said in a soft tone. This wasn’t part of the script!

I was fuming, ready to rip the apparatus off my arm and flee the room BUT my dad was

there. I wanted to impress him. I was a man. I could take this. The nurse then gave me a “3, 2,

1, ready?”, and it was too late to run. She was right though, I didn’t really feel the needle going in.

The nurse was trying to make conversation with me to take my mind off what was happening. It was working, but the temptation to look down towards the needle was too much, and as soon as I did, my panic shot up to fever pitch levels.

Now that I had seen it, my mind was able to make me feel it, my blood being slowly sucked out my arm and filling up the numerous test tubes the nurse had. I was now sweating and felt like I was going to faint. The intense heat of the hospital wasn’t doing me any favours.

“That’s me finished,” she said, as she took the elastic band thing off my arm.

I leapt off the bed immediately and sat down beside my parents. You evil cow, I thought. My fringe was dripping with sweat and the colour had gone from my face. The nurse passed me a cardboard bowl to use for being sick in and asked me to lie back on the bed.

As soon as she said at that, I rocketed up out of the seat and sprinted out the door. In a state of panic and anger, I thought her plan was to now take blood from my other arm. I didn’t realise that she was just suggesting that I lie on the bed until I calmed down, and fully recovered.

Somehow, I managed to find my way out that maze of a hospital by myself.

The fresh air hit me and it was like I had never been outside before in my life. I walked along the side of the hospital building and found a large circular window ledge that I was able to fit myself into. I shut my eyes and leant back. The cool breeze hit against the side of my face. I was safe again. My parents appeared a couple of minutes later both grinning but trying their hardest not to laugh. “So where do you want to go for lunch? You can choose,” my dad said.

Everything was soon forgotten about.

*

After about 6-9 months, I received another appointment letter from the hospital in Edinburgh. This appointment would include going for a CT scan – similar to an x-ray I was told, and then a chat with one of the doctors.

Before that, I remember hearing my parents talking about the length of time that had gone without the hospital being in touch with us. “Well, no news is good news, don’t worry about it, it’ll be fine,” my dad would always say, trying his best to sound relaxed and calm my mum. But I could tell he was worried as well.

My mum swore on her life that there’d be no surprise blood tests, and even if there were, I made here aware that I would not be letting it happen! I was more relaxed this time as we walked through the corridors of the hospital. I knew what I was dealing with now.

The CT scan waiting area was in a different part of the hospital to where I had been to previously. Down more corridors and up more stairs. It wasn’t a long wait before my name was called, and my parents and I were led into a room.

There was a massive bit of equipment that hung down from the ceiling. The face of it was just a couple of feet up from the bed that I was to lie on. There were a couple of seats, a bit

back from this intimidating construction, for my parents to sit on, read magazines, and keep me company.

I was asked to lie down and told the scan would take about fifty minutes so I had to try and stay very still. I lay down straight away and stared straight ahead of me, I didn’t dare move a muscle in case I got electrocuted or zapped or something.

I had no idea what this machine could/would do.

The scanner looked like one of the magnetic machines they use in scrapyards to move cars around. It didn’t look technical at all. Just brutal and solid. There was nothing to even suggest that it was turned on. It was just a big, beige monster of a machine. Then all of a sudden, a drilling noise filled the room. Every five minutes the noise changed from a drilling tone, to a buzzing, and then to a droning. This went on for the remainder of the scan. I spoke to my Dad about Celtic for a while, and then I shut my eyes, and tried to forget about where I was.

I didn’t even think to ask about the purpose of the scan. I just assumed it was for my spine and was happy with that. It was actually to take a look at my brain.

The noises came to a halt, and a nurse appeared at my side. “That’s it over, Connor, you can get up now. Well done,” she said. I got up and walked out the room with my parents. “We’ll send these scans through to the doctor and he’ll see you soon. Hopefully you won’t be waiting too long,” the nurse said, before giving us directions to the next waiting area we were to go to.

I remember it being a really nice day, and the sun was blazing through the windows as we headed down more corridors, adding to the equator-like temperature of the hospital. But I hadn’t been asked to give blood by that point, I hadn’t been tricked into it, so I was in pretty upbeat spirits, and I couldn’t get enough of the extra attention I was getting from my parents because I was in hospital. I started thinking about getting home and phoning my friends to come down and play football as we reached the next waiting area.

It wasn’t really a waiting area. There were just a few seats sitting outside of what was a high dependency ward for infants. The doctor’s office was just to the side of the ward. I started getting a bit anxious, glancing through the windows behind me to the ward a few times.

Machines at the sides of children’s beds and tubes everywhere. What’s going on here?

They’re taking this spine issue a bit far. I’m not ill, I thought. I was getting more defensive the longer we waited. I never said anything to my parents, this battle was all in my head, and I couldn’t understand it.

After what felt like about an impossibly long time, I heard a comforting voice to the side of me say, “Connor Beveridge please”. I turned and there was a man standing in a doorway. He had a kind smile on his face and shook my hand, as he welcomed my parents and me into his office. I remember him having hair that didn’t look like it had been brushed for a week and a beard that required a bit TLC. But it was a look that instantly told you he was an important doctor. He didn’t care about, or have the time to think about, his physical appearance.

The way he spoke to me was the complete opposite way I thought he would come across, based on his hairy head and face. I can’t remember the specific things he asked me about, but I was immediately at ease and relaxed. Then he turned to my parents and asked if they wanted me to stay in the room.

They said no.

I turned to shut the door as I was walking out, catching a final glimpse of the doctor’s face, and that was the last time I saw him for a few years. I sat back down on the seats outside the ward and stared at the ground. I wasn’t concerned, just confused.

After about ten minutes my parents emerged from the room. As soon as my dad closed the door behind him, I began quizzing them as to why I was told to leave the room. I can’t remember the reason they gave me, but it was sufficient enough for the thought to leave my mind as quickly as it had entered it.

I had practically forgotten about it by the time we stepped out of the hospital.

My mum told me that the x-ray had confirmed the suspected curvature in my spine and it was medically referred to as scoliosis. This wasn’t a biggie. I had known about this curvature ever since my mum and dad first spotted it. What I was more interested in was what she went on

to say. “Your curvature may or may not require an operation when you’re older, it depends how your body reacts to growth spirts and things”. Although it was still a worry, I was more relieved that nothing had to happen right now. Hopefully it wouldn’t even need to happen in the future.

To most people, the future resembles a distant time or place where they don’t need to worry about things, and that is especially true for a nine-year-old boy. The only things I cared about were Celtic, and playing football with my friends, certainly not the future. So, after that, I forgot about my scoliosis for quite a while.

As we left the hospital that day, my parents chose not to burden my mind with the real diagnosis I had been given, the real reason I had to leave the meeting with the doctor.

What my mum told me wasn’t a lie, the x-ray did confirm I had scoliosis. But, in trying to investigate what had caused the curvature, the blood tests suggested I suffered from something more sinister, and the CT scan backed the results up by producing certain images of my brain.

The investigations revealed that I was suffering from a rare, genetic, and life-limiting condition. The disease was, and is called, Friedreichs Ataxia.

The doctor went on to tell my parents, that the little boy that had just walked in front of them to leave the room, would be bound to a wheelchair by his early teenage years, and have a reduced life expectancy. Moreover, as well as scoliosis, there was a chance I would pick up diabetes, and I’d almost definitely suffer from cardiomyopathy – the primary cause of death for people with Friedreichs Ataxia. Furthermore, my speech would become increasingly slurred as I got older, I would struggle with my hearing, and I’d experience difficulties with my vision – resulting in possible vision loss in the advanced years of disease progression.

What a party Friedreichs Ataxia would be.

Knowing what I do now, I have no idea how my mum and dad found the strength to stand up and walk out of that meeting. Then to face me, and to act in a way as to not make me

suspicious, it’s just incredible. I can’t imagine the horror that must’ve been going through

their minds as we walked out Edinburgh’s Royal Hospital for Sick Children that sunny day

The shock, the complete and utter shock, must’ve helped get them back to the car and complete the journey home without breaking down in front of me.

I remember going into my grans on the way back home that day. My gran was looking after my sister, Olivia, whilst we were at the hospital. Olivia and I were asked to go into the other room and close the door behind us. I didn’t think anything of this at all, or relate it to the hospital in any way, this was just the usual routine for adult conversations, and they could’ve been talking about anything.

I usually tried to listen through the door as much as I could, but I couldn’t care what was said that afternoon. I was content with what my mum had told me about my spine and I was just happy I wouldn’t need to go to the hospital again anytime soon. I sat engrossed watching my favourite cartoon on tv, completely oblivious to the devastating news my parents were now sharing with my gran.

I was only nine-years-old. There was never any mention of Friedreichs Ataxia to me. My parents let it haunt them. They didn’t want to intoxicate my mind with the diagnosis; a diagnosis that has no medical treatment whatsoever and one that surgery can’t repair. What good would it have done? My happy and carefree childhood would have been turned on its head, and my parents wanted to stop that from happening for

Part 2

Memories after the diagnosis.

Neither scoliosis nor Friedreich’s Ataxia gave me too much bother during the rest of my time at primary school (age of 9-11). Everything was flowing the way that life should for a young boy; I had plenty of friends, I was part of a football team, and made the move from primary school to high school seamlessly. I was happy.

I did receive lots of questions from people asking why I had a limp – did I have a sore knee/sore foot? – especially if people saw me running. My parents had equipped me with answers though. My dad always reassured me that the issues other people were seeing weren’t really there; I was just flat footed, that was the problem.

My mum did mention to me that I had an issue with my nerves, and it affected my balance and the way I walked/ran a bit.

The off-the-cuff way she told me – the word choice and the tone – made me feel like it was nothing to worry about though. It wasn’t significant. Which is why this ‘nerve problem’ went in one ear and out the other. I had no curiosity at all, and it wasn’t like I was an uninquisitive child. But there was never any panic in her voice whenever she mentioned this issue, and it was hardly ever spoken about.

Whereas, on the contrary, scoliosis was mentioned and brought up regularly. I could physically see it/touch it, which always put it at the forefront of my mind. Everyone else could as well, and it was pretty straightforward to explain and easily understood by my peers.

I repeated myself answering similar questions for years: “Why do you walk like that?”, “Have you to get an operation?” My spine was the main perpetrator for anything and everything, and this consolidated the idea in my mind that scoliosis was the culprit for however I felt as I got older.

I’d finish off my regurgitated answers by mentioning my flat feet, and then my ‘nerve problem’, if I remembered about it.

*

When I was ten, I remember going to a Celtic game with my neighbours. They had a family member who lived in Glasgow, and was able to get them tickets whenever they wanted.

I had been to a game with them before (the previous season) and I really enjoyed it, but remember having to walk for ages to reach the stadium, from where we parked the car – or at least it felt like we did. I found it really hard work. By not having one of my parents there with me, I didn’t feel comfortable asking to park closer, complaining about it, or asking to take a rest. It was really tiring but I just had to grin and bear it. I was excited the next time they asked me to go but that memory did play on my mind a little.

A further year down the line, the muscles in my back began to ache when I walked distances. The dull nagging made me think about, and focus on scoliosis more, cementing the idea that it was the be-all-and-end-all issue. The ‘nerve problem’ was practically forgotten about. My legs got really heavy and tired as well if I had to walk for a period of time, but this discomfort

was always eclipsed by the pains in my back. I didn’t have the time to think properly about my legs, I just thought the tiredness in them was a knock-on effect from having to walk about carrying my upper body with a curve in my spine.

Anyway, I was buzzing to go to Celtic Park and see The Boys play again. Finding walking more difficult was never going to get in the way of me and the Hoops. I was told there was a spare ticket for my dad to come this time, so the little embers of worry/anxiety, that were beginning to burn away in the back of my head were immediately put out.

Without even saying anything, we parked a lot closer. We still had to walk a fair bit but it was nowhere near to the distance we covered the last time. I could actually see the top of the stadium when I got out the car.

As we headed towards Celtic Park, I remember listening to my neighbour’s uncle – the guy who got us the tickets – talking to my dad. My eyes were busy looking around and taking everything in; the fans, the colours, the stadium. But as I said before, I was quite a nosey person, and my ears were still listening into the adult conversation. I heard the uncle quietly asking my Dad about me … “What’s wrong with the wee man?” The supporters just ahead of us started to sing, and I didn’t hear my dad’s full answer but he started the sentence off with “It’s one of God’s sins …”

What on earth was he talking about? I thought. Scoliosis could be operated on and fixed. What is the big deal? What a strange thing for him to say, I thought. My dad wasn’t even religious.

However, I was quickly taken away by the atmosphere of Celtic Park as I let my ears and concentration fade away from their conversation. I soon forgot all about it.

*

Another memory I have from around this time is when a police officer was called to our house.

I had a set of football goals in my garden that I used nearly every day growing up, either by myself, with my friends or with my cousins. The other neighbours we had at the time weren’t exactly the most pleasant, so every time the ball went over the garden hedge and landed in his garden, it was always a debacle. We’d spend ages arguing about who should be the one to chap on the door and ask for the ball back. We were petrified to face the man.

One afternoon when the ball went over, my sister and I created a little hole in the bottom of the hedge which separated our garden and his. It was at the top of the garden so my parents didn’t really pay attention to what we were doing. We used it to scurry back and forward a couple of times without being caught by the man or his wife. One morning we went out and our secret passage had been tied up with chicken wire. We’d been caught.

The following weekend I remember playing with my cousin, and it wasn’t long until the ball went over. This time the man came running out of his backdoor, waving a knife at us and shouting. We got on the trampoline immediately and started jumping, trying to get to a height that we could see over the hedge and get a better view of what was going on. He picked up the ball and held it up above the hedge so we could easily see it, and stabbed it with his knife.

“The next time this ball will be your heads,” he declared, before walking back into his house and slamming the door behind him.

My cousin and I proper shat ourselves. We dropped down and lay on the trampoline, nervously laughing at each other, until we went in and told my parents about what had happened. My mum and dad both just laughed. From then on, my mum bought us really light, plastic, fly-away footballs to use in the garden. They wouldn’t be able to damage the man’s garden flowers if they got kicked over. However, they continued to get thrown back burst.

A few weeks later, I was upstairs brushing my teeth and getting prepared for school and I heard an unknown voice downstairs. I ran downstairs pretending I had to get something from the living room, to try and get a glimpse of who it was. The unfamiliar voice was coming from a police officer. She was standing in the kitchen talking to my mum. My nosiness was going off the scale. I thumped back up the stairs and then stealthily went ¾ of the way back down, and took a seat. The entrance to the kitchen was just at the bottom of the stairs, to your right-hand side, so I could hear every word that was said clear as day, and because I was sitting a few steps up I was completely hidden by a wall.

One of the first things I heard my mum say was “Connor prefers to play his football in the garden. He feels safe, and we can keep an eye on him …” Hmm, that’s a bit weird, I thought. Why is she talking about me like I’m a wee boy? I was glued to the conversation, even more now that I knew it was about me. “My son is disabled,” were the next words to come out of her mouth.

What the hell was she talking about now? I thought. I didn’t really know what that word meant but I knew it was something I didn’t want to be or associated with.

I still remember how weird, and strange I felt hearing her say that. My mind was still ignorant to disabilities. Apart from my classmate in Newcastle I had never known anyone who had a disability, and I didn’t use a wheelchair so how could I possibly be disabled? It made no sense for me to be disabled.

I started to think, and I convinced myself that my mum was blagging the police officer by saying my scoliosis meant I was disabled. The police officer didn’t know that I would be operated on in a few years, if need be, and everything would be fine.

Once this had all gone through my thought process, I wasn’t as confused anymore, I was just angry. How dare she call me disabled, how dare she taint me like that, I thought. As I said, I didn’t even know what it fully meant, I just knew it was something you didn’t want to be.

I had zoned out of their conversation and was listening to the voices in my head, then I heard my name being called out by my Mum, “Connor, can you come down here a minute?”

I jumped to my feet and quickly crept back up to the top of the stairs. I turned around and came back down, making a more emphatic thudding noise on every step, just to try and prove I had been innocently upstairs. I walked into the kitchen, with my hands behind my back. I looked up and the policewoman gave me a massive smile. Thank God, I thought, she didn’t look like she was going to arrest me.

The officer told me not to worry about it, and to continue playing football in my garden as much as I wanted. She was going to have another word with the neighbour and sort things out.

I remember my Mum telling me that the police officer had actually visited the neighbour before she came to ours, and he had been verbally abusive to her. So, she already knew what she was dealing with before she got our side of the story.

Once she left, I was buzzing that we looked to be in the all-clear, but I was still a bit irked that my mum had dirtied my name to help us get there.

“Why did you say that?” I said, demanding an answer.

She could clearly see how unimpressed I was. Looking back at it now, that must’ve have really thrown her. My dad was upstairs, reading my sister a story before bed in her room, so she didn’t have any back-up on answering this horrible and awkward question. I remember her using delaying tactics – stuttering and mumbling – before saying, “Well you know, your spine”. “That’s not being disabled though. I’m not disabled!” I replied.

I kept going like that until my mum accepted that she had used the wrong term. I was still angry but I let it go and went to bed; after all, it had got us off scot-free with the police.

*

Scoliosis continued to get the blame for everything, and puberty hit when I was between eleven- and twelve-years-old. The combination of growth spurts and the changing of hormones aggravated my scoliosis, and the curvature in my spine rapidly increased. I began to see and feel the real effects of it.

Although I had had a curvature for a couple of years, it never brought me too many difficulties. My day-to-day life went unscathed, and scoliosis never came into my thinking unless I had to walk distances etc. I was still able to do everything my friends could do.

My parents were just seeing that as well – me getting on with life, successfully making the transition to high school, and having a good time with my friends. My mum had also fallen pregnant around that time so everyone’s attentions were elsewhere. I had turned a blind eye to the worsening of my scoliosis, to an extent, and my parents had turned a blind eye to the creeping effects of Friedreich’s Ataxia. It soon became impossible to ignore though.

*

I loved my first and second years of high school. There was so much change from primary school: the size of the building, the teachers, the subjects, the pupils, the classrooms, the daily timetable – six different classes a day, getting buses to-and-from school, and being able to choose where to go for your lunch. Every day felt like an adventure, especially in first year, and I had met loads of new people. I was confident and sociable so had no problem making new friends, even though my back was becoming more uncomfortable to live with.

Looking back at photos of me around this age – there’s one especially from my holidays where I have my top off – and the curvature looks quite severe. My upper body was permanently leaning over to my left-hand side. But it didn’t start giving me serious and relentless pain until I was in second year, allowing my confidence to remain unaffected

until then, as I wasn’t dwelling on it and feeling sorry for myself. Surgery was going to fix it anyway so I never took the time to worry or fret about it – there was nothing to worry about in my eyes.

I never had any other symptoms that could be related to Friedreich’s Ataxia (that I could see) when I first started high school either, just my strange gait, and all the new friends I met in high school easily understood how my scoliosis was causing this. I never got any other questions once I explained scoliosis, so I was never prompted to go searching for answers or start asking my parents questions about anything.

After a few months at high school, I had settled into a new, large group of friends mainly from Thornton and Markinch. We’d socialise outside of school by meeting up every Friday or Saturday evening.

During the week at school it would be agreed to meet in either of the villages. The night would just consist of us walking aimlessly around the chosen village in a big group – talking, laughing and joking around. Carefree. Drinking cans of energy juice and eating ice poles as we done circuits around the same streets. After a couple of hours, a member of the group who lived in the village would cave in and ‘invite’ us back to their house. We’d all sit in their bedroom and watch films and eat/drink whatever delicacy we bought from the shop earlier.

In the first few months we did this, I was never too bothered about whether we’d go back to someone’s house or not. But gradually this changed, and by the time I was in second year of high school, I was always desperate to go back to someone’s house. The walking began to seriously knacker me out, and the pain from my back was crippling. The bones in my feet ached too. This discomfort tied in with my dad’s story about me having flat feet.

But before we went back to someone’s house there would be one last challenge for me. By that time of the night, we were now bored, and this coupled with the energy and sugar rushes from the drinks/ice poles only meant one thing. ‘Chappy’.

You’d soon hear a chapping noise just behind us, followed by the footsteps of the boys running away, and everyone would immediately disperse, running as if their lives were at stake. The game was hilarious and adrenaline pumping for twelve/thirteen-year-olds. But as time went on, and in line with my growing need/want to be in the comfort of someone’s bedroom instead of walking about outside, I remember purposely trying to run behind everyone else when ‘Chappy’ commenced.

I knew by comments and questions over the last couple of years that people clearly saw my running as very strange and I started to get a bit self-conscious of it. Although the strange walk/run was nothing new, and I had well-rehearsed answers for questions, I was now at an age that I was more aware of things and naturally a bit more self-conscious.

I was now getting pain from it which made me think about it more. It became an insecurity, especially in front of girls. As a twelve/thirteen-year-old, the last thing you want to be seen as, is different. Even the questions began to bother me, especially in PE at high school.

Before my answer just rolled off my tongue without thinking, but I was getting fed up of it.

“Why do you run funny?” a boy asked in the PE changing rooms one day. I had dealt with incidents like this hundreds of times and I can’t remember any of them, but this one has always stuck in my head. I can still picture him smirking in my head now.

I had heard him sniggering during that lesson, when it was my turn to run up and do the long jump. The fact I have such a clear memory of this one incident speaks for itself. I was starting to crack a bit inside. It was getting to me for the first time.

*

After a few months of my first year at high school, I began to feel the pressure from not having kissed a girl properly. I needed to keep with the rest of my friends, I didn’t want to risk lagging behind, and earning a reputation as the guy who still hasn’t snogged yet.

A ‘double-date’ was soon organised with one of my best friends and two girls. It wasn’t exactly a date. It was just like any other night out I went on with the rest of my friends, the only difference being that there were only four of us.

I remember practising how to snog on my arm before I went to bed at night, trying to recreate what I had seen in films. When I had finished licking my arm, my mind instantly turned to another issue about kissing that had been bothering me.

When I closed my eyes, I had noticed that I had difficulties trying to keep my balance and remain standing still. I’ll find a way round it, I always told myself. I was worried about it but I was too determined to let it stop me.

The night out was going well; laughing, talking, and joking as we walked around Thornton. The conversation got a bit more heated and interesting when we sat down at the shelter in the park. My friend brought up the topic of ‘Top 5s’.

A ‘Top 5’ was a mandatory list everyone had in their first year of high school, and it was a ranking system of the 5 people they fancied at the time – who was first was top of the chain, and if you were fifth, you’d be in with an outside shout but there was a lot of groundwork you’d need to cover. My ‘Top 5’ changed daily, so it was a significant but highly flexible list, especially if you were a boy.

The girl that I had my eye on that night had told me that I was in her ‘Top 5’. I was number 1. Result.

Both me and my friend were named in the opposite girls ‘Top 5’ as well. Quite a ballsy thing for the girls to do. But we were both ranked at either fourth or fifth so that diffused the tension. Even though I had been given the all clear to make my move, after the revealing of

the ‘Top 5’, it still took me all night trying to pluck up the courage to do it.

As well as the worry about not snogging correctly, I couldn’t stop thinking about whether to shut my eyes or not. I had a mental image that she’d open her eyes midway through and notice that mine weren’t shut and freak out.

Another boy in my year had been caught doing this a few weeks before. He was now seen as a bit strange and creepy. God knows why he did “have his eyes wide open” according to the rumours. Thinking about it, it would look extremely weird, and scary to catch somebody

doing this. But the poor guy was probably just petrified, not relaxed enough to do as he had been instructed by his mates, and desperate not to do anything drastically wrong, and in being so nervous had committed one of the worst crimes he could. The crime came with a grim sentence; any potential opportunities he had with other girls in my year now were bleak, almost non-existent. I certainly didn’t want to share his fate.

Should I risk shutting my eyes? If I did and lost my balance, stumbled, and fell that would be far more humiliating than being caught kissing someone with my eyes open, would it not? I tried to weigh up the opportunity costs of the different options. I was struggling. I couldn’t take this running commentary inside my head anymore.

While we stood waiting for the girls to be picked up at the end of the night, I told my mind to shut up and made my move. Determination won the battle and took over.

We were waiting outside the shop, so I asked her to walk around the corner and a little down the street with me. I wanted to get out of sight from my friend and the passing cars. We kissed just outside the park gates. It was totally awkward as I had no idea what I was doing. But everything else was perfect.

I shut my eyes initially, only for a second or two – it was more like a longer than normal blink. Just as I started to feel myself getting a little unsteady, I slowly opened them. She had hers firmly shut. Oh, you dancer! I thought. I closed my eyelids halfway, so I wasn’t gawking at her wide-eyed in case she did have a look, but she didn’t for the rest of the kiss. Where we were was well lit with street lights as well, so I felt completely stable.

The only thing that could’ve made that moment better was if I knew how to kiss. But I wasn’t caring, the whole escapade had been a success.

*

My next memory comes from nearer the end of my second year at high school. I remember sitting in my modern studies class and seeing a few boys staring at me, and whispering. I could tell something was going on, and then I heard one of them mention my name. I wasn’t the type to sit back so I went straight over to them and asked what was going on.

They mumbled a few times and said it was nothing, but they knew that I had called their bullshit. I wasn’t going anywhere, and wanted answers. The boy who was doing all the whispering began to pipe up but he wouldn’t look me in the eye.

He told me that he had a friend who had told him things about me like I’d need to use a wheelchair when I was older and that I wouldn’t live long. “What the f*** is he talking about? Why is he saying that?” I asked, completely confused. The teacher came into the room at that point and told us all to get back to our seats.

I obviously didn’t pay much attention in that lesson, as I tried to comprehend what I had just been told. But I couldn’t process it because it just made no sense. Who was this boy? Why was he making rumours up about me? What did he have against me to do this? I thought, and I couldn’t come up with any possible answers.

The more I thought about it, the more embarrassed I got. To make it even weirder, the boy who was the source of this rumour went to a completely different school, how did he even know my name? I had no way of getting a hold of this guy and finding out what his beef was.

But as I walked to the next class, as if fate had planned it, I was notified that he was meeting the guy in my class at lunchtime outside of the school that day.

I remember at the beginning of the next class the English teacher asked us to discuss what we thought the difference was between the words affect and effect. How ironic looking back at it now. At that point, I had no idea I was suffering from a genetic disease that would greatly affect my life, with the effects of Friedreichs Ataxia being enormous.

The bell rang for lunch and I was overcome with a mixture of dread and adrenaline. I was shaking as I went down the stairwell and met my friends for lunch. I clearly remember walking out the school and seeing the boy standing there. My friends all knew about the situation at this point – rumours travel quickly in high school – so I felt a bit under pressure to approach him and stand up for myself. I wasn’t a coward.

I walked towards him, shouting as I went, asking him why he was saying these things about me. His mouth was moving but I had no idea if he was saying anything. The embarrassment I was feeling had caused a mental block. I wasn’t taking anything in. As I got closer, I grabbed him by the shirt, just below his neck, and told him to stop. I honestly don’t remember

anything he said. In that moment I didn’t actually care about what he said. I just wanted this awkward and embarrassing position I was in to be over. I wasn’t a violent person at all, and I felt ridiculous at how I was acting with him. Not forgetting that my group of friends were behind me watching what was going on.

Although I don’t remember anything he said, I do remember looking at him in the eye, and it confused me even more. He looked like a normal, genuine boy, just like me and one of my pals. Not the type that would make up rumours for the sake of. It wasn’t what I was expecting at all.

The boy must’ve agreed to my demands and I let go of his shirt, turned away and went to lunch. The next thought on my mind was whether I would have a steak or mince pie from the bakers. I managed to forget about what had just gone on for the rest of the school-day.

When I got home, I broke down to my mum. One of my aunt’s was in the house when I got home that day, and that was a blessing in disguise for my mum. She probably would’ve broken down trying to console me by herself, but because she had my aunt, the two of them were able to calm me down together, and talk me out of my confusion.

I remember them both pretending to be as confused as I was at why this boy was saying these things, and that there was nothing to worry about. I believed them.

I quickly moved on from this situation, but something about it always silently stuck in my head. It was like deep down, on some sub-conscious level, I knew it was the truth. I know

that sounds ridiculous, and I can’t explain it. But the experience was quickly put right to the back of my mind. I never spoke about it again with either my friends or family. It was over.

Even now, I’m still not sure how that boy knew about my future before I did.

*

I have another small memory from not long after dealing with that boy. In my final weeks of second year at high school, I had to decide what subjects I wanted to study in my third and fourth years. The subjects I decided on would make up my standard grade exams.

There was a career fair at the school, just before my ‘choices sheet’ had to be handed in, and I wasn’t really fussed for going to it, but my mum was keen, so we went. I had basically already made up my mind about what to take, but there was one subject that was giving me problems.

PE.

There were teachers from every department in the school there, all standing behind stalls in the assembly hall, offering extra information on the content of their courses, and answering any subsequent questions. PE was the only stall I had my eye on.

I knew taking PE wasn’t really an option. My scoliosis had crept up on me during that year and I was starting to suffer from quite a bit of pain, and I couldn’t walk as far, and I knew my spine would continue to get worse until it was operated on. So, there was no chance I could do the standard grade course.

But all my friends were taking it, and were buzzing about it. It was killing me that I wasn’t.

I tried to kid myself on that it was a real option, and that’s how I made it out to my friends as well. If I made it look like it was a tough decision for me, well then it wouldn’t look as strange or peculiar that I wasn’t doing it, or that it was out – with my capabilities. Only I knew it was out of the question, and as long as my friends didn’t, it was fine. They just had to believe my bullshit rhetoric about how I was concerned that “standard grade PE might not be something employers and universities look out for in the future”, so I might not take it.

I don’t remember anything from the night apart from speaking to a teacher in the PE department (He was my PE teacher at the time, and he also worked as a guidance teacher for the ‘house’ I was in at school – he therefore knew things about me). I stood at the stall with

my parents and asked him about the course, and if that qualification was required to become a PE teacher in the future. (My thinking at the time was that once I had surgery, I would be able to do the higher course of PE in my fifth or sixth year at school, which would then open up the option of studying to be a PE teacher at university).

I didn’t even want to be a PE teacher; it was just one of the first careers that come to a twelve/thirteen-year-olds mind, who enjoys sports, and doesn’t know what else he’s interested in. But I wanted to know the option was still open to me.

He looked at me and paused. Almost a gaze. He then looked behind me, glancing at my parents quickly, before returning to me. He started talking but I wasn’t listening. That look stuck in my head. Almost like he was flustered, and didn’t know what to say. Something about it stunk. I knew it all had a reason, but I didn’t know what it was. I never spoke about it to anyone, but it always remained with me, just as that ‘rumour’ did in the previous memory.

My parents approved of my plan to not take PE in third and fourth year, but then to pick it up again in fifth year once my spine was fixed. The following day I ticked the box for studying music instead of PE.

*

I had been part of a football team since we had moved up to Scotland.

Football was a huge part of my life when I was younger. It was the be-all and end-all. My cousins and I loved pretending we were one of top Celtic players at the time, or one of the legends like Henrik Larsson – the King of Kings. The thought of emulating one of the players one day was a dream – and I still dream about it now sometimes.

I adored football, but playing for, and being a member of a team was a different thing altogether. Making friends with a brand-new group of boys – who didn’t know me from school or anything else – was a benefit immediately, and the other benefits that came after a while were just as important; being a member of a group, having a sense of purpose within that group, teamwork, feeling appreciated, togetherness, banter, building your trust in new people, and having loyalty to your teammates.

These were things that I was probably only getting in little amounts from the rest of my life, but being in that football team brought these emotions/life skills to the forefront. I thrived under this new source of companionship.

I was a defender, and I was given the nickname ‘chopper’ because of my no-nonsense attitude, and tendency to slide tackle players – ‘chopping’ them down. I enjoyed living up to this nickname, and more importantly, I loved getting the approval from my dad.

Between the ages of twelve and thirteen, things took quite a dramatic turn for me, in terms of my ability to play football. Gradually I no longer felt as secure with the ball at my feet, or as stable going in for tackles. I found it difficult trying to run at speed without the ball, and almost impossible with the ball. I began struggling to pass the ball in directions that my brain wanted it go in. A lot of the time my balance would go once I had kicked the ball; I would either fall back, or stagger around, before I found my centre point again.

These changes were all gradual to begin with, but I degenerated quickly once my scoliosis really kicked in.

I was a regular starter for my team prior to these changes. I was ‘chopper’ for God’s sake, I was the man my teammates could count on in defence. I flourished under this reputation, and even my team-mates’ dads called me by my nickname. They would all encourage and cheer me on as I got ‘stuck in’ to opposition players. I felt almost invincible for a while. But these changes brought me right back down to earth.

The image I had of myself, my ego, and from that, some of my personality, was all being quickly destroyed. As these physical and neurological changes took place I began to be named as a substitute. I was gutted the first time I was told. I had never been named a substitute since I joined the club. I felt so ashamed having to tell my dad I was a substitute; it was humiliating.

But – and there’s a tiny part of me that is still disgusted at myself for this now – I also felt a sense of relief.

Looking back at it now, this is where my physical disability also became a mental disability.

My worsening physical health, introduced doses of unnatural anxiety and self-consciousness to my mind. This compounded week on week from there on. Because of how bad my back was at that point, I was getting a lot more questions at school and in my everyday life, and it wasn’t long until my teammates started to become more curious. The initial explanations they had of

my scoliosis and flat feet weren’t enough anymore. At training sessions, I had seen a few of the boys whispering to themselves every time I had done a running or dribbling exercise, or I’d hear the moans from a wayward shot or pass I made.

I began to feel isolated. The sense of purpose, the respect, the loyalty; it was all fading.

The things that being in the team taught me, and the confidence it spurred on, was giving way – something that was unimaginable six months earlier. The ‘disgraceful’ sense of relief I felt from being named a sub, was because it took away the worry of making a fool of myself in front of my team-mates, the opposition, and anyone else who was watching the game. I really didn’t want to humiliate myself or make a mockery of my dad. Doing things wrong in training was one thing, but doing something wrong in a match in front of everyone, and having my dad watching, wasn’t even worth thinking about.

I was ashamed of this worrying and my self-consciousness, but I couldn’t escape from it. The thoughts were too strong for me. I had no idea how to deal with it, and I never dared mention it to anyone. I had gone from such a strong and proud position, to being a complete shell of myself; I went from loving playing football as part of a team, to dreading it. I started missing training sessions. With how low I was feeling, coupled with the increasing pain I was getting in my back, meant that I had very little motivation to keep going. I remember making up excuses to my parents each week in order not to go, shamefully relieved every time I got off the hook.

I had been on a number of trips with the team since I had joined – once to Holland, and twice to the south of England. This time they were going down to Newcastle. I was asked if I wanted to go, and it was weird actually doubting whether to say yes or now. Previously I wouldn’t have batted an eyelid but this was the position I was now in. In the end, fuelled by my dad’s encouragement, I reluctantly decided to go. I remember at the time, making the decision in my head, that this was the last chance I was giving the football team.

I was a ghost for the most part of that trip, and that was what I wanted, not to be seen or heard. My confidence was diminishing and my anxiety/self-consciousness had taken a firm grip.

I was named as a substitute for the game in Newcastle. I remember walking away from my huddled-up teammates who were getting a team talk from the manager, I had a football at my feet, my head down, and just thought about getting home and being with my family. I tried to find a happy place in my mind to forget where I was at the present.

The game had started and my team were getting beaten, and the boy who was being played in the position that I had ‘owned’ for years, was having a nightmare. The boy was actually a striker, not a defender, which made me feel even more worthless; playing him in front of me just showed how much of a liability I was to the team.

I stood watching from the side-lines, with the ball still at my feet, and after a succession of mistakes from that boy, I heard the captain of the team (my old defensive partner) shout out “GET CHOPPER ON!” Immense pride ran through my body for a few seconds. My spirits completely lifted. I was my old self for a split second. My teammates needed me, and I had a purpose, I was important. But once that glimpsing moment was over, I just wanted to tell him to shut up, run away, and hide.

I was subbed on five minutes later. I remember jogging onto the pitch and standing in the position I was meant to be in, praying that the ball wouldn’t come over my side of the pitch much, and I could get away with just standing about. My dad wasn’t there which was two- fold: I had no sense of security at all, there was no one at the side of the pitch who would protect me from anything bad happening, but on the other hand, I couldn’t embarrass him by doing something wrong – a wonky pass or tackle. I didn’t make any major mistakes for the rest of that game – my prayers were answered as I didn’t have much to do – but I remember the glee I felt when the full-time whistle went.

I clearly no longer enjoyed playing competitive football; it was now both physically and mentally draining. I continued to attend the football for another couple of weeks, following the trip to Newcastle.

At our next match, I was named as a substitute again. I wasn’t exactly shocked at this anymore, but the shame continued to endure, and it exacerbated with every week I stood at the side of the pitch, watching my teammates kick off. That week, I wasn’t given the opportunity to play at any point during the game – I was usually subbed on for at least 10 minutes. All of the other substitute players were put on apart from me.

The following week, we were playing at Coaltown of Wemyss. We finished our warmups, and got a quick drink before the coach called all the boys in. Staring at the ground walking towards him, my stomach was churning, as I thought about what he was about to say. I knew it was all over before he said anything.

I couldn’t take any more of this. It was a different pain to what I had ever felt before. It wasn’t physical. It was emotional torture for a thirteen-year-old.

Once he read out the team-sheet I walked straight over to my dad, put my head into his

jumper, and burst into tears. I couldn’t hide the frustration, anger, or confusion anymore. He walked me away from the football pitch and tried to talk to me. But I couldn’t be settled, my decision was made. He knew he couldn’t say anything that would convince me otherwise.

Over the last while, although I tried to hide it as much as I could, my dad would’ve been able to see how this situation had been hurting me.

We turned away and walked towards the car. I sobbed into his arm as he guided me out the park, and I never turned around once to see if any of my teammates were looking. I wasn’t bothered at what they thought, I knew I wouldn’t be back. My dad and I never spoke about that day again. Somehow, I managed to accept what had happened and get on with it.

Hopefully one day I’d play for a football team again after my operation, I thought.

*

It was either during the summer holidays, or at the beginning of third year at high school, that I last met up with my friends for one of the nights out. The usual still happened; walking around, standing about, going to the shop multiple times, and playing ‘Chappy’.

I was in a lot of discomfort just keeping up with everyone when walking now, never mind running. I remember watching everyone run off and feeling almost helpless. I tried to do a jog but I had to stop after about 50 yards. I staggered over to the side of the road and rested on a garden wall. I was completely immobilised with the pain, my head was spinning, and I went into a cold sweat. I was sure I was going to faint. My friends had gone, they had run off in all

directions, which was I was quite glad of, knowing that they couldn’t see me like this. I slouched down to the ground and lay my back on the garden wall. I shut my eyes and tried to breathe as deeply as I could. The cold from the pavement going up and through my palms, travelling through the rest of my body like a soothing wave.

My energy came back after about 5 minutes, and I pulled my phone from my pocket, and called my dad to get picked up. I never told him what had gone on when I got in the car. I was scared and shocked by what I had just experienced, and I didn’t want to talk about it. My body gave me a warning about how serious my situation was with scoliosis that night.

The hospital had been contacted a couple of months earlier when the pain became more frequent but there was a three-month waiting list. I was nearly at the end of it and got an appointment to see the orthopaedic consultant not long after. I was almost relieved when the letter came through the door – quite a change from how I used to feel about seeing doctors. I still feared hospitals but I knew I had to go now. I could no longer live with my head in the clouds. I had tried so hard to forget about the possibility I would need to have an operation, and I had let the progress of scoliosis go on too long without going back to the hospital. My parents and I went to see the orthopaedic consultant/surgeon at the Edinburgh Royal Infirmary in late September/early October.

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.

Photo’s (1)

My first time going to Celtic Park.
Just after my diagnosis one of my aunts contacted Celtic and explained the situation to them. They offered me and my dad tickets to sit in the director’s box for a game.
At the time I was told we were just getting to use my aunts’ friends season tickets for the day.

About a year after my diagnosis. I still looked a picture of health as my dad threw me up in the air so I could do somersaults into a hotel pool.

‘Chopper’ all suited and booted before a football tournament in England.

Galloping towards my dad when we won the tournament.

Champions!

This was the picture I mentioned earlier. You can see my posture was beginning to deform but I still wasn’t getting pain from it. This was in the summer before I moved up to high school. I would’ve been eleven.

Getting a henna tattoo of the Celtic emblem on the same holiday. You can clearly see the hunch in my back.

Quick picture with my mum about an hour before my operation.

Pre-op.

Post-op.

The screws helping hold things in place.

My scar. The bit that got infected is right at the top, it’s just cut out of this picture.

Part 4

Memories of life after the operation.

I returned to school at the beginning of February, only part-time initially, but a bit of normality finally returned to my life. It was brilliant to see all my friends again.

The school tried to accommodate my needs as much as they could; I got a taxi to and from school – to avoid to hustle and bustle of getting the school bus, I was allowed to leave lessons five minutes early – so I could travel to the next lesson before the whole school was walking the corridors, and I was allowed to stay in the library with a ‘few’ of my friends at break-time to avoid the risk of falling or tripping up outside

Being back at school part-time gave me the best of both worlds; I could see all my friends in the morning, then in the afternoons I could come home and rest. My guidance teacher had arranged my timetable so I would only go to classes that were in the same area of the building as one another, and required going up/down as few stairs as possible. If the class was too far away, I would sit in the library and the teacher of that class would come to me and give me a textbook to work from. I felt like Lord Muck. I loved it.

The reduced hours at school didn’t last long though.

After a few weeks, instead of resting in the afternoons, lying in bed watching films, I’d be sitting bored. I remember being reluctant to admit it because part-time education was so cushty, and I knew once I committed to going back full-time that I’d never get it back. But it was clear I didn’t need any more time off, and my parents and guidance teacher could see how well I was adapting back into everything.

The taxis to and from school continued for another week or two once I returned to normal hours at school. They were brilliant for in the mornings because it meant I didn’t need to walk up to the bus stop, and I was picked up later than the time I would need to leave to walk up for the bus, so it gave my mum (who was also getting Scarlett, my one-year-old sister ready) or Olivia (who was also getting ready to go to Primary School) an extra 10 minutes to help me straighten my hair.

Although my posture had improved significantly since the operation, and this obviously benefitted my gait, like I said, I knew I still wasn’t ‘normal’, and it had nothing to do with how skinny I was or my brain being ill-accustomed to my height – it had been three/four months since the operation so I should’ve adapted to it by now. There were still issues and people continued to stare and ask questions. This allowed the anxieties that arose in the final months of playing in my football team to awaken a little.

They remained faint, but I remember that feeling of dread and daunt starting to come into my head again.

After the football scenario I never had the same confidence I used to have. I remember walking out my house every morning and thinking about if the taxi driver was staring at me walking towards the car or, if he had already picked anyone up and they were staring at me. My neck and calves began to tighten up and I’d walk with my hands clenched on my bag straps. I’d immediately calm down once I got sat in the car.

The taxi would drop us off at the front of the school, usually during registration classes. I liked this because it meant that there were no large gatherings of students at the front of the school, and the corridors were a lot quieter.

However, there were two downsides to this.

The main reception at the school was just a big glass wall and it was quite reflective, so I couldn’t see in, and every time I got out that taxi, I knew that somebody would be standing inside and looking out at me, staring at my walk. They would get a good, long look at my walking-style until I reached the reception doors. Then on the way up to my registration class, there was a long corridor I had to walk along (maybe about 100 yards) that had a classroom at the end of it. The classroom door was always open and the desks inside were positioned and faced directly towards the wall with the door on it, thus a number of the desks had a direct and uninterrupted view back along the corridor. When the corridors were empty, like they were during registration, there was no one to hide behind so whoever sat at one of the desks was able to have an even longer undisturbed look at me.

Just like when I got sat in the taxi, the tightness, tension and dread, would dissolve as soon as I reached the top of the corridor and past that classroom door.

On a few occasions we got to the school before the bell rang which was even worse.

Although nobody inside the reception could stare at me, plenty of people in the groups of students that you had to zig-zag your way through could have a little wonder. The corridors would then be packed once I got inside. Gangs of people sitting at doorways and on staircases. I hated having to step over people, conscious of them watching me, especially girls, as I made my way through the assault course of their legs and bags in the most normal way I could.

I needed a bannister when going up or down stairs if it was more than two or three steps, but I was still in control of my balance and coordination when standing or walking. I didn’t have fears of falling or tripping. It was my appearance I was bothered about, my ‘limp’, and the penguin-like way my feet went when I walked.

My anxieties were still faint compared to what they became, but they were there straight away when I returned to school, and rapidly got worse from there on once I started losing control of my balance.

*

Getting back to school and seeing my pals was the main thing on my mind at the time though, the good (getting to be with my pals), greatly outweighed anything else.

They really helped me get my life back on track. Things like sitting in the library with me at breaktimes, having banter and chatting about stuff with people the same age as you. They made me feel wanted and that I was still part of the friend group. That support was crucial, it lifted my spirits and gave me a boost of confidence.

I’ll always remember the second or third day back at school when I was still part time; the rumour had obviously been going around a group of boys in my year that I was back, and as soon as the bell rang for break all these boys came pouring into the library and surrounded me. It was an amazing feeling. I wasn’t even close to most of them, but they wanted to see how I was doing and wish me well anyway. I appreciated their nosiness.

Once I started back at school full time, it had been decided that I wouldn’t leave the school building for my lunch. A couple of my friends said they would stay in with me and we were given permission to sit in one of the English classrooms during the lunch hour. I’ll always remember the ones who did this, and they’ll never realise how important they were in making me feel like a normal thirteen/fourteen-year-old boy again – another small act of kindness, just like the lady who wrote me a message in hospital.

Like the library at intervals, we just spoke about simple things like games on the Xbox, or what girls we fancied etc. Talking like that with my pals helped reinforce the feeling that I was a normal teenager again. I fitted in. The connection I had with my pals hadn’t been lost. Gone were the days where I lay, slightly stupefied, watching Homes Under the Hammer.

I was just like one of my pals, and I was back living my life. It felt good.

*

I was pretty happy for a good few months after getting back to school, but the benefits I received from having an improved posture, such as no longer needing to be insecure about having a hunchback, bag straps staying on without slipping off constantly, not living with a nagging pain, and no longer being the smallest one out of my friends, were very quickly forgotten about with some of the difficulties I soon faced.

One of these difficulties is that I couldn’t really run anymore.

It was like my brain and muscles had forgotten how to do it. I could manage a jog, but the more I tried to increase the speed I was going at, the more I lost control, and my limbs felt less and less like a part of my body. There was no synchrony. It was such a strange feeling.

For some reason I refused to say to my parents about it, and because I was still able to jog, I was able to ‘play’ football with my friends – I didn’t really play, it was more just jogging on the spot and making simple passes, the polar opposite from how ‘Chopper’ used to charge about the pitch. But I was still able to socialise and ‘participate’ in a sporting sense with my pals. Maybe if my symptoms were a little worse and I couldn’t engage in activities at all, then I wouldn’t have accepted things so easily and would’ve demanded answers from my parents.

At the time I wasn’t sure what was happening. Was this because of the operation? It must be because nobody else seemed that perplexed by it, I thought. My parents hadn’t asked me about it and they didn’t seem confused, so this made me think that it probably wasn’t anything too serious. My friends never asked any questions either. I don’t know what they thought, and because I was never asked about it, I never felt prompted to ask about it myself.

The subconscious concerns remained in my head, but I remember just being more bothered about what other people thought of me. As long as nobody thought anything bad about me then it was cool.

Just as with my inability to really run, my friends never asked me any questions about my walking in general either. However, the questions still came from other people.

I remember bumping into a boy one day, he had behavioural difficulties and didn’t hold back from asking questions that other people would shy away from. He was in most of my classes during first and second year so we were familiar with each other. He asked me why I walked with a limp, like I had “shat myself” or had a “sore knee/foot”. I told him I didn’t know what he was talking about, and he started doing an impersonation to show me what he meant. I couldn’t understand.

I didn’t look that bad, did I? As I was always so focused on what other people thought of me, comments like this would just heighten my growing anxieties further.

Since these were allegations coming from other people, not just silent thoughts in my head, I wasn’t shy in asking my parents about it.

But they just completely dismissed it. “You don’t walk with a limp at all, I don’t know what he’s talking about. You walk with your feet a little wider apart to help you keep your balance because of your nerve problem, but even that is barely noticeable” my mum would say.

*

Another memory and issue which makes more sense now, knowing about how Friedreichs Ataxia impacts your coordination, was from my music class. At the time, I never took it as seriously as I should have because it never affected my walking, and because nobody else paid attention or asked questions about it.

Instead of choosing to study PE as a standard grade, I went with music.

I had actually quite enjoyed music classes in first and second year, and I was given the chance to try out playing the drums which I thought were great, and I ended up getting a drum kit from my parents for Christmas one year. So, when I had to choose what two instruments I wanted to be graded on as part of the standard grade, it wasn’t difficult deciding what the first instrument would be.

I had never really focused on it but I do remember struggling with my speed when playing the drums; my hands couldn’t keep up with the tempo for songs with faster beats and backing tracks. The difficulty became more obvious after my operation when I had to begin properly playing them, but I just shrugged it off, and put it down to being a bit rusty.

After a few months of trying to persevere with it I remember the teacher talking to me about changing from the drums to an easier instrument to be graded on, the marimba.

The drum kit was in the centre of the class and the keyboards were on tables right around the perimeter of the room, so every time I was asked to play for my teacher it was in front of everyone who had picked to be graded on the keyboard – half the girls in the class.

No matter how much I tried, I couldn’t keep up with the quicker beat that the teacher was asking for. It was frustrating and confusing, and I started to get a bit cheeky with her, conscious of the fact my peers were watching me. This went on for a few weeks and I was referred to my guidance teacher because of my behaviour. I quickly apologised to my music teacher and agreed to change my instrument to the marimba.

The marimba was easy to play, you just used a set of beaters to smack chime bars in time with music, just like a massive xylophone – which was already my second instrument.

The xylophone had brought me a bit of confusion as well. I was struggling to hit notes accurately with the beater. Half the beater head would be on the note I was aiming for, and half would be on the note next to it. We were told to hit the notes right in the centre of the chime bar for the best sound, and I couldn’t do that either; I would be in the middle half of the time, and the other half I would be right at the top or bottom of the bar, giving off quite a distinctive noise.

I was noticing similar issues with the marimba; however, the bigger surface area of each note had made my inaccuracies less noticeable to other people – so I was far less concerned about it.

*

Something else that bothered me in my third year at school was my handwriting.

I was never the neatest or quickest writer, and when I had complained about this before, my mum had told me that it was because I was left-handed. I believed her and I continued without thinking too much about it, but then in studying for subjects like English, business management, and modern studies, where a lot of continuous handwriting was required in the exams, the light was shone back on the issue.

It seemed to have got worse from when I noticed it. I could barely keep up, and it now caused a horrible, dull pain in my palm and around the sides of my hand. I persisted with it though, and I don’t remember asking my parents about it again.

*

The factors that had been ideal for my first kiss were very much in contrast a couple of years down the line. I had been back at school for a month or two, and not long turned fourteen.

MSN Messenger (an online messaging service) was the latest fad at the time, as the internet started appealing to teenagers for the first time. You could keep in contact with your friends whenever you wanted, as long as they were online, which was brilliant for me after being absent for so long. I was hooked, and it allowed me to feel like I was properly in the loop again within my bigger group of friends. I felt involved, valued, and a member of the gang.

Mobile phones still weren’t a huge thing then, and social media was only just starting to take off. MSN and Bebo were all you got.

I was now an age where I was more interested in girls and actually thought about them, and through MSN I was able to speak to girls from both my school and from others. It was quite easy as well – you had far less nerves anyway. You just had to impress girls with how cool your custom MSN emoticons were. I had been speaking to a girl from another school for about a week and we were now in a relationship. We hadn’t met in real life yet, but this highlights the abilities MSN had in suddenly chopping and changing my love life at around that age.

I had a number of other similar relationships. I remember ‘going out’ with another girl for a few weeks without ever having a conversation with her that wasn’t on MSN. Whilst ‘playing’ football with my friends one day, I was informed by someone who stayed in the same village as her, that the girl had a skip in her front garden, insinuating that she was from a rough family. So, I finished with her swiftly before we ever actually met or spoke in real life. It’s funny how your thought process works when your younger and how easily persuaded you are by your friends. The girl was probably just getting her bathroom or kitchen done up.

Anyway, a date was set with the other girl, and we eventually met up for a night out a few weeks later.

We both brought our own friends along with us for a bit support, just in case things got a little awkward. I can’t remember much of the night, just little snapshots of us all sitting at the park shelter, the skatepark, and the playpark. Just as before, it took me until the end of the night to pluck up the courage to kiss her.

We were hanging out at a playpark at the time, and it was at the back of a housing estate. When we first got to the park it was still pretty light, but we were there for a couple of hours and as it got darker, I started to lose my bearings. It felt so strange. Feeling totally alive and awake in my brain but gradually losing control of my limbs, like the communication between them was obstructed.

To someone without FA, I think it’d feel a bit like being forced to go on the waltzers ten times, put in a room with only a very dim light on, which would stop you from collapsing completely, and never recovering from the unsteadiness that the waltzers had caused you until you were in adequate light again.

The weird thing is that it was only my legs that were dizzy, my upper body and mind were clear. My legs were the only things that’d been on the waltzers.

The street lights were on, but they were about fifty yards away and the light wasn’t strong enough to cover the park area. I sat and leant on things in the park as much as I could to try and hide this dizziness and stop anyone else noticing. Doing this also helped relieve the tightness in my lower back I had from all the standing.

I noticed prior to that night that I struggled to keep control of myself in poorly lit areas, and was hit with a weird ‘bodily-dizziness’ in which I couldn’t direct my limbs properly. But like with other things, I didn’t mention it to anyone. I think this might have been partly because in the four/five months that followed my operation, the dramatic improvement in my posture had allowed certain things to get better, which maybe helped mask, or make less striking the changes I noticed.

The joy at no longer being hunched over to the side, having an abnormal curvature eroding from my clothes, the hospital episode of my life being over, and being back at school like a normal teenager had an impact in stopping me from bringing the issue up with my parents.

There was no chance that I could shut my eyes for even a couple of seconds this time, like I did with my first kiss.

But I couldn’t not kiss her, that’d be weird. I was in big trouble here, I thought.

All her friends were gathered behind her, and mine behind me, as we walked out of the park and got ready to say goodbye. We had a full-blown audience and there was no way I could escape. This couldn’t be any worse if I wanted it to be. Thankfully, because of how dark the area was, I was able to get away with having my eyes open from the start of the kiss. From where they were standing, neither her friends nor mine would be able to notice. She’d still get a fright if she looked but I literally couldn’t care. Call me a creep all you want, I thought.

What a change from my first kiss. I was petrified about falling over.

I had to use every muscle, and have 100% focus to remain as stable as I could during the kiss. I tried so hard to stay strong. My muscles tired though and the inevitable happened.

My balance gave in and I took a staggered step backwards away from her. It felt a lot longer, but it only took a second before I found my centre again and stabilised. Taking a couple of shuffled steps back towards her I remember trying to think of excuses as to why this happened. I was mortified. My heart was literally in my mouth. I tried to laugh it off and say I stepped in a ditch. She didn’t seem to care and just started kissing me again. We said  goodbye and I turned away and caught up with my friends – they had already started walking away from the park fed up of watching me kiss.

Walking towards them I was aware that I was still in the line of sight of the girl and her friends. I could feel their eyes burning a hole in the back of my head, and my body went completely rigid, just like walking up to registration class at school.

I didn’t have any friends to hide behind yet or furniture to lean on, and she could clearly see my strange gait, which was probably even stranger now because of how up-tight I was. I’d become a jointless robot, no flexibility in my legs. I was terrified I was going to lose my balance again and make a fool of myself before I finally reached my friends.

I could relax a bit more as I caught up with my friends and we turned a corner and of sight of the girl. She couldn’t see my gait anymore and form opinions. Thank God!

I was now under the street lights, and the disorientation disappeared instantly. I was in control again. My emotions were going all over the place as we walked towards my friend’s house; relieved that it was over, embarrassed at what had happened, but also a bit buzzing after kissing an attractive girl.

I immediately went over what had just happened with my pals. I had to check and see what they had seen and what opinions they had formed. They admitted to seeing me ‘stumbling’ but didn’t know what happened. Before they could finish talking, I let them know about the ditch. The story that went along with it was out of my mouth before I could even think about it. I took the blame away from me. There was nothing wrong with me. It wasn’t my fault, there was nothing wrong with me. My friends seemed to believe it. I had justified myself to them, I thought. Now I had to make the girl believe my story.

I couldn’t text and walk at the same time, another weird thing I noticed about myself, but when I was back at my friend’s house, I sent her a message straight away. First mentioning that she was an amazing kisser, and then explaining the ditch story. She went along with it. I seemed to be out of the woods, but remember still feeling a bit agitated with my friends as I waited on my dad picking me up. I couldn’t get what had happened out my head.

Exposing myself like this was one of my worst nightmares – showing that I was different.

I kept on bringing it up with my friends, trying to laugh about it, but they didn’t seem to care or think it was a big deal. I was so embarrassed by it though.

Why did I feel the need to make up this story about the imaginary ditch? Why did I become so ashamed when I lost my balance or did anything abnormal?

My scoliosis had been operated on so there was nothing left to deflect the blame on to.

Therefore, I blamed myself for everything I done, and every time things seemed to get a little worse, I beat myself up a little more about it. I was my own worst enemy, in my head. Why was I doing this to myself? Why was I failing myself? I couldn’t understand. My negative opinion of myself was one thing, but I couldn’t even begin to comprehend other people’s opinions of me; they would see me in a more negative light every time I exposed my abnormalities, I thought. It was best to hide as much as possible.

Events like that kiss started off my repetitive negative thinking, and these thoughts compounded for years as the symptoms of Friedreichs Ataxia progressed. This was the mindset I dug myself into. I never spoke to anyone about how I was feeling or what I was thinking. I felt like it was my own issue to solve. The confusion swirling about my mind soon turned into anger and frustration, and in turn, soon into hatred. Hatred of myself.

I knew I had a ‘nerve problem’ but I still never took that seriously, and the realities of the ‘nerve problem’ that I knew about from that boy and the rumour, were still locked up and hidden away in the subconscious part of my brain.

*

The anxieties I went back to school with deepened after that kiss, and gradually continued to get worse with every few months that passed. I struggled to make myself appear normal whilst FA continued to degenerate, and with every incident that disclosed my difficulties, there would be a spike in my distress, and my anxieties went to another level.

One clear memory that’s an example of this, is from about five months after being back at high school, I was asked to represent Auchmuty at my old primary school.

They were hosting a business enterprise day for the P7s at the time – Olivia’s class. There were a few of us from Auchmuty there and we were all given a group of P7s. They had to create a business based on a case study they were give, and we were there to help and encourage them along with it.

Something along those lines anyway.

Just before the end of the day, the guy who was running the event gave out certificates to each of the teams and instead of getting all the P7 pupils to go up individually to collect their award, to save time, he asked for the Auchmuty representatives to go up and collect them on their team’s behalf.

He called us out one by one so each team could get a round of applause. My heart sunk instantly. There were only about fifty P7s in the hall, and a few teachers, but all eyes were on the front of the room where the man stood. This exact sort of scenario was my worst nightmare. People being able to stare at me walking, judging me, and there being nowhere I can hide.

My muscles tightened up and became more rigid as the first couple of people were called out. I was seriously fretting. That’s the first memory I have of me, having that amount of dread over walking in front of people.

He called out my team’s name and I got up and walked towards him in what felt like slow motion. Everything in my body was rock solid, and aching. My fists were clenched in my pockets.

I looked up from the floor, and the guy handing out the certificates began impersonating how I was walking.

What he thought was a sort of slow-motion swagger from a ‘cool’ and ‘I can’t be bothered with this’ teenager. He didn’t mean anything malicious by it. All the P7s started laughing. I tried to smile to join in the joke, but inside I felt numb.

I was desperate for the ground to swallow me up, more embarrassed for my onlooking sister than for myself.

I had just done this to her in front of all her pals. She must’ve been as confused as I was. Why did her brother walk like this? We never spoke about it, even when we got home, and I didn’t say anything to my parents, I don’t know if she did.

*

Another memory which invoked similar emotions came in the January of the following year.

I went to a Celtic game with a few of my cousins. That was the first issue, I hadn’t seen the cousin who was driving us there in years. It freaked me out. I didn’t want him to see how strange my walk was becoming, and I didn’t want to change the picture he had in his head of me – a ‘normal’ wee guy. I wouldn’t know what to say if he asked questions either. I couldn’t understand myself why I was changing, so there was no chance I could explain to anyone else what was happening.

I couldn’t say no to a Celtic game though, that’d be just as difficult to explain.

We got up to Perth and managed to buy tickets from fans outside the stadium. Two of the tickets were for the main stand and the other two for the stand behind the goal.

It was agreed I’d sit with my other cousin whom I knew well, thank God. It meant my cousin from Aberdeen, who I was unfamiliar with, wouldn’t need to see me tackle the steps. This was a worry that was beginning to grip me.

My room used to be upstairs in my house but after my operation I swapped with my parents, and my room was now downstairs. I was told this was just a temporary thing until I got stronger on my feet. I was fuming when I was told the arrangement was being made permanent. But my mum and dad were obviously considering things I had no idea about. So, I was using the stairs less at home, and I was far less confident using them at school, especially when they were busy.

We had to go down five or six steps to get to our seats in the stadium. It was still pretty quiet so I could take my time. I was able to pretend I was going really slow on purpose, looking out across the stadium as I took a moment with every step I went down. Once I reached my seat,

I immediately started worrying about how I was going to cope trying to get back up those steps at full-time.

If I asked my cousin to wait at the end for a couple of minutes whilst the crowd dispersed a little, he’d wonder why, and I wouldn’t know what to say. I didn’t want him to think there was anything wrong with me, I didn’t want him to think anything of me other than being a completely ‘normal’ teenager – just how I wanted everyone to see me. But if I tried to get up the steps at full-time whilst everyone else was bustling out there was a massive chance I’d fall. I was stuck between a rock and a hard place. I sat stressing throughout the game.

Celtic won 4-1 but apart from one of the goals, a stunning Marc-Antoine Fortune strike, I can’t remember any of it.

The final whistle went and everyone got up from their seats. I was hoping my cousin would turn to me and suggest waiting a minute without me saying anything but he was already up and queuing to get a place on the stairwell.

I just couldn’t bring myself to tap him on the shoulder and ask him to wait. I couldn’t have him thinking differently of me or that I couldn’t do something.

Just as at Thornton Primary, my muscles had gone solid as I shuffled along the row of seats towards the steps. A man stood back on the steps to create a space for me to join the group of supporters leaving the stadium. I moved out onto the stairwell, and just stood frozen.

My brain was crying out at what it wanted my body to do but I couldn’t do it, my limbs wouldn’t comply. I stood staring at the step in-front of me for what felt like five minutes, but was probably only about ten seconds. Conscious of all the fans behind me that I was holding up, I finally managed to put a step forward.

My worsening coordination caused me to put my foot two steps in front of me, instead of just the one, and I fell forward. I was completely stuck. This couldn’t have gone any worse, I thought. A guy who was coming out of the row just above me saw me, gave me a smile, and put his hand out and pulled me up the stairs with him.

Although my cousin was standing at the top of the stairs, looking down them and searching for me, I don’t think he’d seen anything, it was too busy. But we never spoke about it even if he did. I never mentioned anything to my parents when I got home either.

I could still walk short distances all right, but the confusion and anxieties were racking up and I was getting more frustrated at myself, and I was ashamed of myself for actually feeling anxious – like at the primary school and at the Celtic game. The ‘Chopper’ ego was a long- lost memory, and I hated how I had become more vulnerable in every sense. I should be proud and confident. I was a guy with metal poles and about twenty screws in my back, I shouldn’t be scared of anything. But I wasn’t proud, far from it, and incidents like that game just pushed me deeper into the mental-rut I was in.

*

More and more often I would try to scurry away from socialising with my pals outside school. Finding excuses not to go swimming, not to play football, not to meet them at nights unless it was in someone’s house. As I had exams at the end of fourth year, they got used as a bit of an excuse. Studying for them was also a distraction for myself. They were something to focus on and take my mind off the changes and difficulties I was having.

Nearing the end of fourth year I began to struggle walking meaningful distances. I was able to get around school ok, and then for lunches. Morrisons was only about one hundred and fifty yards away so that was do-able for me, but I couldn’t manage going up the town centre anymore. Thankfully most of my pals preferred getting their lunch from Morrisons anyway.

I don’t know what I’d have done if I had to explain to them that for some weird reason, a reason that even I didn’t understand, I couldn’t walk up to the town centre.

But just before the summer holidays that year I remember being forced to walk up the town centre by the school.

There was career fair we had to attend, run by all the universities in Scotland, in preparation for us going into fifth year, and go kick-start our thoughts on further education. I felt like I had to go. All my pals were going. But I couldn’t think of a way to make it easier for myself.

Looking back, if I had just said something to my parents, then something would’ve easily been arranged by the school e.g. a taxi to transport me up. But once again I never said anything. Too ashamed and too confused about the growing problems I was having.

The town centre itself was probably only three/four hundred yards away, but to make it worse, the place where the fair was taking place was at the very far end of the centre, and it was uphill all the way.

I started off walking with my group of friends, but before I even reached the shopping centre I had fallen to the back, and was walking myself. Other groups began passing me as my walking slowed right down. With each group that passed, I tried to pick out and talk to someone I recognised, so I could walk with them for a bit, and to look/feel less awkward walking by myself. But I couldn’t keep up with anyone who went past me.

I was freaking out inside but I had to try and remain focused, whilst looking relaxed to on-looking shoppers and my passing peers.

I eventually made it up to the hall. I spotted one of my friends who had already been in the event and was walking out, so I asked him to come and sit outside with me until I stopped sweating.

I was exhausted, feeling like I had just done back to back marathons, and the fact my friend had already been in and out of the event shows how long it took me to reach the hall. But I was also buzzing at what I had just done. So thankful that I hadn’t fallen or embarrassed myself in front of my peers.

I never walked up to the town centre again.

I ended up doing very well in my exams that year, and my grades allowed me to go into fifth year doing five Highers. I was achieving and had a purpose, which stopped me from going into a visible meltdown, putting the jig saw pieces of my ill health together.

*

One of my most potent memories regarding my walking and physical abilities came in the summer holidays of that year.

As I said, I was socialising with friends far less now. I couldn’t walk aimlessly around villages like in the years before my operation, and during the holidays I had even begun refusing to go places with my parents. I didn’t want to people to see me. My Xbox was a great thing for me at that time as it allowed me to keep in contact with my pals. I wasn’t physically with them but I was still chatting to them every other day.

Having a spell of being more self-conscious is quite a natural thing for a teenager to go through. Most boys desperately try to look cool to impress girls, whilst trying not to adversely stand out from the crowd in any way. Having had my operation and a three-month break from school, I already felt like I stood out. Then when this was coupled with the further difficulties I was having, my gait especially, I felt like I had been thrown way out in the sticks.

I became a lot quieter in social situations. I wanted to hide and this was a good way to do it.

With less attention on me, I hoped my differences would dilute in other people’s minds, as I wouldn’t be as relevant. My pals wouldn’t see me as quite so peculiar and girls would still be attracted to me. Well at least that’s what my skewed way of thinking thought at the time. But all it did was make me less fun to be around.

My personality started fading away gradually and my confidence started crumbling. My self- consciousness had rocketed way past any natural teenage level. My disintegrating confidence was welcomed with open arms by my existing issues with anxiety.

My mental health was disabling me just as much as my physical issues.

My mind started to run marathons before any little thing I did, thinking about all the possibilities and outcomes, and things always had a negative consequence. It was draining and exhausting, which in turn, made it easier to be quiet around my pals because I had depleted most of my energy before I was even with them. I didn’t have it in me to be loud or funny if I wanted to – a ‘normal’ person would’ve probably felt the same way but fatigue is a huge symptom anyway in Friedreichs Ataxia.

Endless thinking had taken over me, and at the time I knew I was just seriously overthinking, but I couldn’t stop it nevertheless. I’ve always been quite a serious person as well, and I like things to the point and straight forward, I like to plan and have things organised. With my gait being in the condition it was, I felt that my thoughts were justified.

Will we need to walk? How far will we need to walk? Will we be standing? How long will I be standing? Will I be able to get a seat? Will I need to go up/down steps? Will the steps have a handrail? What if I stumble and trip? Will we be walking in the dark? Will I need to walk in front of people? What if I catch people staring and talking about me? What if somebody asks what is wrong with me? Will there be people there that I used to know there but haven’t seen in years? Will there be people from other schools there? Will there be girls from other schools there – one’s that I’ve spoken to online but never in person? Would my ‘online personality/brand’ be ruined if anyone saw me? (Facebook was now becoming mainstream, and I liked the idea of people that I didn’t know in real life being able to go on to my profile and not know that I had issues with my walking/balance, not knowing that I was different). Should I chance it going out?

If I ever actually considered doing things with my pals, then after going through questions like these, I very rarely found the motivation to end up saying yes.

Anyway, I forced myself to go out one night. It was near the end of the holidays and I hadn’t seen my pals for a few weeks so I felt a bit more pressure to go and see them. I had to keep myself semi-relevant to the ones who didn’t play the Xbox – particularly the girls.

We were meeting in Markinch. I was hoping and expecting one of my friends to invite us all back to their house, and therefore I wouldn’t need to be standing or walking for long. We were too old to be walking the streets so it would be the logical thing to do, I thought, at least that’s what I kept telling myself to push me out the house.

But once I got dropped off, it soon became clear that nobody who lived in the village was up for caving into peer pressure and letting us go back to their house.

So, we stood outside the train station for what felt like hours trying to decide what to do.

Everyone was happy to see each other; smiling, laughing, joking. Carefree. I had learned how to do a fake smile whilst I kept myself in the background. Still laughing at what others said to make it look like I was there, make me feel like I was there. Trying to persuade myself that I was ‘normal’ just like my pals in front of me. But inside my heart would be racing and my mind would be somewhere else completely, unable to settle until I was in an environment I knew I was safe in.

My muscles were beginning to ache the longer we stood there. My legs and lower back, especially, becoming solid and rigid from just trying to keep myself upright without anything to lean or sit on. With nothing to take the pressure off my calves were screaming from the tension.

Since my operation, although I would no longer get pain from my spine, the tightness around my hips and coccyx was unbearable. It was probably down to weakness around that area, and my tendons/hamstrings being too tight in my legs. It’s crazy that I was never referred to a physiotherapist at my local hospital after my operation. Considering I suffer from a muscular- degenerative disease, I was never going to recover fully under my own supervision – I didn’t even know I suffered from Friedreichs Ataxia! The expertise of a physiotherapist, and the exercises/stretches they would’ve been able to show me, I believe would’ve helped immensely. Possibly even helping keep some of my symptoms at bay for a longer.

Still standing at that train station, I was getting ready to phone my dad.

Then somebody came up with the idea of walking to the next village. Everyone was up for it.

I felt a gut-wrenching dread. I couldn’t do this, I just couldn’t, but how do I explain that to my pals? I couldn’t do that either. How do I get out of this?

I had adopted a kind of cynical sense of humour and ‘can’t be bothered’ attitude to get out of situations that I didn’t want to be in, and this was one of those times.

Everything inside me was sinking. But the fake smile remained.

“Well there’s no way I’m doing that. I’m getting picked up. See you later”, I said to a few of my pals in a sarcastic, jokingly fashion.

They laughed, and I did too, but I was deadly serious inside. I had to use this humour to cover up how my anxiety and low confidence resulted in me being terrified of doing things that would show up my gait to people. The humour was a smokescreen.

I really wanted to get picked up, but with my friends encouraging me to stay out with them, it sparked off a little bit fighting spirit. A bit of the ‘Chopper’ ego emerged. Why should I have to leave my friends? Why should they be able to do what I can’t? If I left, it would just further cement what I already knew in my head to be true, that I was different to my friends. I just didn’t want to accept it. I was taking a stand to the pessimistic voice in my head.

We started walking.

Once everyone else had gone away in front, I headed straight towards a parked car and leaned against it, to get some relief from my back and legs. They couldn’t see what I was doing.

They had to remain blind to the full extent of my difference, I thought.

I didn’t want to come away from the car but I had to, and I caught up with them as we headed down a cycle path. It was so difficult trying to keep up with the walking speed of my friends, and I would always be just hanging on. I was at the back of the pack as usual – the way I liked it; out of sight from anyone walking directly towards us, whilst also having none of my friends behind me either, getting a clear look at my walking.

After about 100 yards we turned off the cycle path and into woods.

There was a small dirt path we had to follow. I started to lag further behind the walking pack before looking up and noticing a few of my friends standing, waiting for me. My fake smile got put back on as I neared them. “Are youse alright?” I said in a sprightly fashion, pretending nothing was wrong on my side. I looked past them hoping to catch sight of my other friends but they had disappeared.

We kept walking, and I soon found out the reason why they had gone out of sight, as well as the reason a couple of my pals had held back for me. The small dirt path now led us down a steep hillside. They obviously knew the danger of me having a bad fall after my operation. “Jesus Christ. I’m not going down that!” The humoristic and cynical tone came out again.

They laughed, before trying to reassure me, “It’s fine, it’s fine, we’ll help you”.

I couldn’t seriously say no and turn back by myself; that would be worse than if I just got picked up straight away back at the train station. They would’ve just thought I was lazy had I done that, which was fine, but if I turned back and got picked up now then eyebrows would definitely be raised, I thought.

Questions couldn’t be asked so I had to continue. I slipped a few times on the way down but I coped with it. Constantly reassuring my friends that I was fine. Relief filled me when we reached the bottom.

A busy dual-carriageway then had to be crossed at the edge of the woods and this led us on to a gravel path. The friends who stayed behind to help me down the hill ran ahead to catch up with the others once we crossed the road. I was by myself again.

My sensations, and thoughts, after being temporarily blocked out by the sheer concentration I needed to go down that hill and get over the road, came flooding back to me. My legs and back weren’t aching any more, they were agony. I was beginning to really sweat as the distance between me and my friends got greater. My walking speed slowed even further. I didn’t care about trying to keep up with them anymore, they could think what they liked of me for taking longer to walk.

Strange how my mind was now ok with one of my ‘differences’ being so clearly revealed now.

With my shoes sinking into the recently-laid gravel like dry sand, it made it even harder to walk. I felt like I was going to collapse.

I could no longer see any of my friends, and there was nobody else walking in front or behind me, so I was able to stop and calm down a bit. Knowing that nobody was physically watching me was amazing. Once I caught my breath, I carried on again, making less of an effort with my walking, and beginning to sway from one side of the path to the other.

My muscles were so tired, and I was losing control of my walking like never before.

As I turned a corner, a carpark came into sight, and the same friends who had previously waited on me at the top of the hill were standing there again. Please tell me there’s not another bloody hill, I thought. I stopped and tensed up, I had to try to improve my walking again for their eyes.

I was familiar with where I was when I saw the junction of roads just outside the carpark. Straight forward was a road that led us to our destination, taking a right up another hill took you into a different village (and closer to Thornton), a left took you back into Markinch.

I was in no mood to be mucking about anymore. I couldn’t carry on. But I still found the mental energy to lie to my pals about why I was going home.

“I’m just going to walk home from here”, I said quite passively, as though not to cause any alarm which would bring about the questioning of my decision. “I don’t see the point of walking to Milton. It’ll be rubbish. I’ll see you later”, I added. No more fake smile. I was definite in my answer. I turned right and headed towards Coaltown of Balgonie.

The first job was done, I thought. I had escaped my friends with my dignity still intact. I was choosing to go home because I thought the rest of the night would be rubbish, not because it wasn’t physically possible for me to walk much further. I had reinforced this lie by saying I was going to walk home from where we were. The off-the-cuff way in which I said I was doing this helped portray how easy and straight-forward this task would be for me. I obviously had no intention of doing it, I just wanted them to think I was capable of doing it.

I stopped and looked behind me. My friends had gone. I immediately picked out my phone from my pocket and phoned home. My dad said he would pick me up at the shop in Coaltown as he was needing to get a few things. The shop was only a five-minute walk away but I felt like crying. I said it was fine to him.

Like most young boys, my dad was someone I wanted to impress and prove myself to. I didn’t want him to see how my walking seemed to be getting worse, and that I couldn’t do the same activities as I used to with my friends. The weird way my mind was working had me feeling like I was the one at fault for my body failing. I was doing something wrong. I was the problem. The shame was too much. So, I didn’t mention anything to him and that’s why I felt I couldn’t even ask him to pick me up closer to where I was.

I felt like a rabbit caught in headlights as I put my phone away and began walking up the hill again. The path was at the side of a busy main road and my anxiety was really kicking in.

There was nowhere for me to hide, nobody to walk behind, giving oncoming drivers an unobstructed view of me.

There was a large wall at the side of the path, which I was able to run my hand along. I put as much of my weight into it as I could without completely leaning over to one side, and making my strange gait look even more peculiar to the eyes that were on me. From putting weight into it I was able to stop swaying from side to side like before. As I neared the top of the hill I was sweating profusely, the path was ended and I had to switch to the other side of the street.

Before I crossed, I stopped and put my back against the wall for a couple of minutes. I got my phone out my pocket and pretended to be engrossed in it, fully aware that I was standing at the side of a main road with sweat dripping off me.

This publicity was my worst nightmare; my difficulties, differences, and distress totally bare for everyone to see. I was desperate for the ground to swallow me up, just like in the memories at the primary school and Celtic game.

What would people passing in their cars think? Imagine if a girl from school that I fancied was one of them. I would ruin my chances forever. What if the police passed me and stopped because of my dodgy walking, what would I say? Is there anyone looking at me from their living room windows in the houses across the street? As these thoughts were firing through my head, I heard a car beep. Shit. I quickly glanced up and waved. It was one of my sister’s friends. I had been let off lightly. I put my phone back in my pocket and prepared myself to cross the road.

I waited until it was quiet and made my move. I felt like I had a little more strength and stability in my leg muscles after the break, and I crossed the road easier than I had imagined.

The path on the other side had pros and cons. It was wider, and it had parked cars at the side of it which kept me partially hidden from traffic on the road. But there wasn’t a wall at my side to lean on, so the swaying returned a little.

The shop was only about two hundred metres away but it felt like a marathon. The resurgence I felt in my legs was short lived, and it felt like lava had been poured down both my calves and there was no let-up in the tightness.

The bins must have been due to be emptied that night as they were scattered along the path, and it was a lifeline for me. I moved between bins and parked cars, resting my weight on either for a moment before pushing myself off in the direction of the next. I did this all way up until I was nearly at the shop.

I put everything I had left to push myself that last few yards towards the shop.

I turned into the carpark and saw my dad’s car. I could’ve burst into tears in relief. Absolute relief.

I couldn’t cry though, it would give it away to him that I had a problem.

On the drive home I didn’t mention a thing. I gave the same reason to him for coming home as I did to my friends, “I didn’t see the point going to Milton, it was a waste of time, it would be rubbish”. My dad saw my sweat-drenched hair and the obvious physical discomfort I was in. He must have known the real reason I was coming home, he knew about Friedreichs Ataxia, my weakness, my difference, but nothing was spoken about.

I pulled my top off me when I got home, and jumped straight into the shower. It was a light shade of purple when I left to go out, but now it was unrecognisable. Before I went in the shower, I remember going around the house parading it in front of everyone. I found it crazy how drenched it was, and quite funny. I remember my parents smiling as I showed them but the alarm bells must have been ringing in their heads. Unknowingly to me, I was doing exactly what I didn’t want to do; highlighting my problem. By revealing my excessive sweating, it was showing them Friedreichs Ataxia was firming its grip on me.

I was buzzing to finally be home, content in my bedroom playing the Xbox, my safe place where nobody could see me. I felt kind of proud of myself for the rest of the night – I had tried my best with my pals.

I remember speaking to one of my friends on the Xbox the following day and asking him about what they got up to when they reached Milton. I then kept up my lie and told him about how I walked all the way home. He probably couldn’t care if I had walked home or not but it was important to me that he thought that.

I had to keep up this fake façade. I was desperate to look ‘normal’. But all it done was damage me even more on the inside. I was only fifteen and my mental health was a mess.

Part 5

Memories of my last years at school

Unknowingly living with Friedreichs Ataxia was becoming increasingly traumatic.

It is becoming more difficult for me to write about with the same clarity, and reflecting now, my last memory was a real pivotal moment and turning point in both my physical and mental ;health.

Another few months down the line my gait became an even bigger issue, and I couldn’t deal with certain thoughts by myself anymore. I started talking to my mum and dad. They were the only ones I mentioned my issues to, and even then, it would just be trivial complaints we’d talk about, nothing too serious.

Although I opened up slightly, my parents only heard about things that I wanted them to know. I was still a firmly shut book when it came to things of importance and what was really going on in my head.

It still honestly didn’t come across my mind to ask questions, or look for an explanation about why my walking was in the condition it was. I had no idea that there was an answer.

I’m struggling to explain it but like I’ve said, I got to a certain point where I blamed myself for what was happening. The anger, rage, frustration, confusion, and embarrassment, I went through on a daily basis now had nowhere to go, there was nothing to blame it on, and I wouldn’t talk to anyone about it. So, all the emotions turned back on themselves, turning into self-blame, and then onto shame and hatred of myself.

It was my fault I was losing my balance. It was my fault every time I stumbled. It was my fault I sweated so much. There was no voice of reasoning in my head to help shut down these thoughts.

*

I have a few more memories from during my fifth year at school. Friedreichs Ataxia is further highlighted by my continued physical degeneration.

The first of which is the difficulties I was now facing around getting the school bus.

It happened gradually, but after the summer holidays that year, the walk between the bus stop and my house became far more onerous. It was a far shorter distance than the walk from the school to the town centre that I had done prior to the holidays, or the walk I had done in my previous memory, but it started to become exhausting.

Sitting around more during the holidays, and not being forced to walk around every day like at school, not keeping my muscles moving, allowed Friedreichs Ataxia to creep up on me and quicken its work rate. The distance I could walk began reducing significantly.

“If you don’t use it, you lose it”.

But instead of being alarmed and focused on how this was happening to me, I was more bothered about what other people thought.

I began leaving fifteen minutes earlier in the mornings. This gave me extra time to calm down and lean against the shop window once I reached the bus stop. After a couple of minutes of arriving at the bus stop, I’d go into the shop and buy a bottle of water, gulp it down, and hope the sweating would stop by the times my friends arrived. That was my routine.

A second reason I left earlier was that obviously I could take a bit more time on the walk up, but more importantly, the street was a lot quieter. Other pupils wouldn’t have left their houses and I wouldn’t have to deal with the worry or fear of them walking behind me, staring and judging me. If I ever did notice someone walking behind me, I would stop and make myself look busy until they went past, like pretending I had to get something out my bag.

Even if the street was completely empty, my mind wouldn’t stop, it’d continue to create more anxieties. For example, when it was quiet, I started getting conscious of just walking past houses. I feared that people were looking out their windows and staring at me.

I obviously didn’t like people going past me in their cars either, especially if there weren’t any parked cars to cover me and block the view anyone in the car had of me.

When I reached the top of my street, I had to cross the road and walk a few metres up the main street to get to the bus stop/shop, and a third reason I left early was so there would be nobody standing there already. That had happened a few times in the past and I absolutely hated it.

It’d make my morning when I looked up towards the bus stop from the top of my street and it being empty.

When the bus arrived, there was usually a bit of an onslaught trying to get on it so I would hold back for a minute until nearly everybody was on. I gradually found the steps more difficult to use, even with a handrail to help me. It was a fifteen-minute journey up to school until I grudgingly had to get back up again, and go back down the bus steps. Going down them was worse than going up because of my poor coordination.

My knee also started giving me a lot of bother during that year, and it would just collapse if I put too much weight on it. I learned to put everything through my left leg, but trying to juggle it with my worsening gait wasn’t easy, especially when going up/down steps with people rushing in front and behind me.

It made certain movements look even more awkward than they already were, further highlighting my differences to people.

I noticed that my right knee cap was inwardly facing compared to my left – which was completely straight. It made a crunching noise when I tried to bend or stretch it, and it was painful unlike my left one. Therefore, I could physically see, feel, hear, and touch whatever was wrong. So, it became something I could point the finger at.

I knew that it definitely wasn’t the sole reason my walking was how it was – I was the reason I was like that – but my knee made things even harder for me. Other people didn’t know that I was to blame though, and I didn’t feel any shame in complaining about it or mentioning that it was hurting me. So, I remember moaning about it a lot.

Other people had knee injuries, it was a pretty normal thing – especially with me having quite sporty friends – so it was fine to mention

I exaggerated the effects my knee was having. At certain times it was definitely to blame, but at others, where it had no impact – like stumbling or losing my balance – my knee would get cursed, and I’d make sure other people knew my knee was at fault for whatever had just happened. It was a bit like how I had used scoliosis to blame things on prior to my operation.

At the time, I saw this ‘knee thing’ as a new problem, but looking back at photos from when I was younger, posing in football strips you can clearly see from my little skinny legs that my right knee cap was always like this. I never had the muscle bulk like a ‘normal’ person should, particularly in my legs and around my kneecaps. The muscle required for protection, and to pull things together wasn’t there, and this coupled with having a strange gait for years and years, is probably why I ended up being in the pain I was in.

I started wearing knee braces and bandages to keep it warm and make it more secure, but I was never tempted to make a doctor’s appointment. I thought if I did it would result in an operation, and I couldn’t be bothered with that again. My exams that year were too important to take a chunk of time off school, and I knew my knee wasn’t the cause of the underlying issues. So, it wasn’t worth it.

*

Lunch times became even more of an ordeal than walking to the bus stop.

Although the walk to Morrisons was shorter in distance, having to keep up with my pals, and being surrounded by hundreds of other pupils from my school made it a nightmare. So many eyes were on me, and the self-consciousness only got worse with how much I was now sweating. I dreaded it.

When in Morrisons I would either buy a pint of milk or a bottle of water, and finish half of it by the time I got down to the till, desperately trying to cool myself down and not break out in a sweat. I’d finish drinking them on the walk back. For a few months this worked, just.

I can’t point out exactly when it was, but I became unable to finish whatever I was drinking on the walk back to school. All my concentration had to be on putting one foot in front of the other and not losing my balance. It was traumatic. As well as the rigidity/stiffness that came with the anxiety of people looking at me, I sweated extensively.

I absolutely hated it.

When we got back to school, we’d sit at a certain stairwell and chill out. It took a good ten minutes for me to cool down and I wouldn’t touch my lunch until I did. I’d chuck all my bags down, take whatever drink I had bought and down it as I hung out of the windows of the stairwell.

Once I got back from Morrisons, what bothered me most about the sweating was that it’d ruin my hair. Never mind how tired or sore my muscles were. My fringe would turn greasy and

girls wouldn’t find me attractive.

As I was now in fifth year, I had to wear a shirt and tie to school instead of a polo shirt, which was excellent for the sweating, and it provided further issues. Do I wear a jumper to cover the sweat patches? But a jumper would make me even hotter, which would make my head sweat more? It sounds pathetic now but it was a real dilemma at the time.

I bought a special roll-on deodorant that blocked up your pores, and stopped you from sweating in the area that you applied it. It was uncomfortable to put on initially, but it worked. I stopped sweating from my armpits – brilliant! But then after a few days – I’m not sure if this was just psychological or not – I felt like I was now sweating twice as much from my forehead. I applied the roll-on to my head, which the instructions told you not to do, but it was worth a go with how well it worked on my arm pits. It was too much though, I couldn’t continue with it through the burning and stinging. I just stopped using it and was back to square one.

I continued to go out for lunch with my pals until the beginning of sixth year, when a few of my pals became prefects and had lunchtime duties in the school dining room – thank God. I was able to tag along with them, and it looked less inconspicuous why I staying in.

During fifth year, instead of the arduous and distressing walk to Morrisons, I would’ve loved to stay in for lunches. But none of my pals were interested in eating in the school. How could I explain to them that I was going to stay in and go for lunch by myself? I had never used my walking as a reason or as an excuse not to do something with them before. I wished I could, but I never even considered it. It showed too much weakness and that I was different.

Hypothetically though, even if I did say to them that walking at lunch was too much for me, what would I have said when they asked why? There was no chance I’d mention anxiety so what would I say? I still had a weird sense of pride with my pals. I felt I still had an untainted reputation because I had never of spoken about my difficulties with them. They were none the wiser to me being different. Which is a load of rubbish but, that’s what I believed at the time.

*

I thought one of the reasons why I was becoming so exhausted and sweaty from walking at school was because I wasn’t fit enough.

Through isolating myself, either sitting on the Xbox or studying in my room, I wasn’t working my muscles apart from the days I was at school. My legs still looked the same since my operation – really skinny and without much muscle tone.

There is a field at the back of my house so I started trying to walk round it as a work-out.

My friends had started to go to the gym but with my anxieties, that was out of the question. I remember thinking about having to do an introductory course with an instructor if I joined, and having to walk from machine to machine with them. He/she would definitely ask questions about my gait, and all the other strangers that went to the gym would stare and end up asking questions as well.

Whereas around the field, I could sweat as much as liked, walk as strangely as I wanted, and nobody would see me. Especially when I was right down the bottom of the field, away from the houses. Just like walking up to the bus stop in the mornings, when I was at the top of the field, I’d be paranoid that people were staring at me from their back windows.

What also bothered me about approaching the top end of the field was that a bowling green backed onto it. There’s a hedge between the bowling green and the field, but you can see over it, and the further down the field you are, the clearer a view the bowlers had of you. I tried to avoid times when games were on.

But I remember one day, although there wasn’t a game on, a man was standing having a cigarette outside the clubhouse. I hadn’t noticed him until I was already halfway up the field. I looked up and he was just standing staring at me. I was still far enough away that he had a clear, head-to-toe view of me. It wouldn’t have mattered if I had turned left, right, or even just lay on the ground, he’d be able to see me. I had to get closer to him so the hedge would begin to block his view. Small memories like that still make my hairs stand on end thinking about them. The tenseness, the stiffness, the nervousness, and the embarrassment were suffocating. The man continued to stare at me until I was hidden by hedge. I remember thinking I hope he doesn’t phone the police as I stumbled up the field and towards my house.

Another day, whilst down the bottom of the field, I tried to jog – which I hadn’t done for quite a while. There was no control at all. It didn’t feel like I was on level ground when I clearly was. It felt like each foot was going down a ditch of different depths with every step I took, it was so disjointed and awkward. I couldn’t understand it, when I was able to jog just the year prior.

I wasn’t shocked though, and I never mentioned anything to my parents when I got back in the house. Like I’ve said, I blamed myself for my degeneration. I kept the walking up for a few months before I lost motivation with it not having the effects at school that I thought it would.

*

In fifth and sixth year, the classes are mixed between the pupils of the two years. I was no longer solely surrounded by people who were familiar with me, or knew me, and in one of my classes I was sat next to a guy in the year above.

He supported Celtic, so we got on straight away. He wouldn’t have known anything about my scoliosis or my gait but he never asked any questions. The class was chemistry, and as we sat next to each other, he was automatically my partner for doing practical experiments.

The experiments usually involved a lot of pouring liquids into beakers, test tubes, and other apparatus, using a lot of your fine motor skills. I would shake and my accuracy would be way off. It reminded me of trying to play the xylophone and marimba in music the previous year. Only now it was more obvious to other people. He noticed how difficult I found doing these certain tasks and said he would do them for me – he would do that stuff and my job would be to collect all the tools and stuff from the cupboards, the skivvy. He still never questioned anything though.

Then I remember one day after class, out of the blue, he came up behind me in the corridor and jumped on my back. I collapsed straight away and smashed both my knees off the floor before he got off, leaving me crumpled on the ground. He thought it was hilarious, as did everyone else around us. I felt no pain from it at all. The adrenaline from the sheer shock and embarrassment had taken me over. I had to go down a flight of stairs to get to my next class and I remember feeling nothing from my dodgy knee, it was like it had been miraculously

fixed. It wasn’t until I tried to get on the bus at the end of the day that the pain started to come back worse than ever.

A couple of days after that, I remember being called down to the reception for something, and on my way back up to class I had to pass him and all his pals in a corridor. We were the only ones in it. Me at one end and them at the other, with nobody in between to block their view of me. My anxiety was sky-high just having to walk towards them with no cover, and then he walked out in front of his pals and started impersonating my gait. His pals burst out laughing. Everything inside me sunk. I couldn’t even muster up a fake smile when I passed them. It just hurt.

This walking issue was taking such a big toll on me now and I’d had enough of it. That was the day I gave in slightly, just like that rumour in second year, I began uncontrollably crying when I got home and told my parents what had happened.

My dad was fuming when he saw me crying, and before my mum could finish telling him what had happened, he got in his car and drove up to the school. I don’t know who he spoke to. He said there was nobody at the reception so he went upstairs and spoke to a teacher in the nearest classroom. I don’t know if that teacher then passed the message onto the guidance department and the boy was spoken to, or what happened. My older cousin also threatened to fight the boy. So, I’m not sure what avenue was more effective, but nothing ever happened after that. In chemistry, he never apologised to me, but he was nothing but friendly for the rest of the year. Thankfully, that was the only case I had of someone picking on me and it got nipped in the bud straight away.

*

I remember another small but embarrassing incident not long after that scenario …

In fifth and sixth year, although you study fewer subjects, the studying is far more intense. During a double period of my history class, the teacher allowed us to have a five-minute break to stretch our legs. This happened every week. So, my pal and I had a usual route we would go, just a loop round the corridor, no stairs or anything. He’s a Rangers supporter so we’d be busy talking about football on our way round.

I looked up as we turned a corner one day, and saw one of the deputy head teachers at the other end of the corridor walking towards us. I looked down immediately, and tried to become engrossed in the conversation I was having with my pal again. My mind wasn’t having it and I started the usual. Tense, rigid, scared, and paranoid. I knew there was a chance of him stopping and questioning me as he had an unobscured view of my walking for about fifty metres.

That was exactly what happened. “Are you alright?” he asked with a concerned grin on his face. He seemed only half serious. I could tell he wasn’t sure how to approach this situation. I knew he couldn’t tell if I was drunk or if I had something wrong with me. I can’t recall anything else that was said. I just remember being conscious of my friend standing beside me. We never spoke about it again and, from that moment on, I clung on to the waist-height board that ran along the main corridor walls of the school. If I turned my hand sideways on the board, I could skim along it and put a bit of my weight into it like I did with the wall in Coaltown.

*

The issue with my handwriting popped up again just before my prelims. I was studying four Highers, all of which required a lot of handwriting. For example, in the Modern Studies exam, you were required to write four consecutive essays in ninety minutes.

It wasn’t happening. It was difficult enough for all my pals, but it was impossible for me.

My teacher for Modern Studies noticed this, and she sorted it out with learning support that I would need additional help in my written exams – this teacher taught me at home after my operation, so knew about all my underlying issues.

I was to be given extra time and the use of a computer to type up essays instead. What a legend that teacher was, I thought. I couldn’t believe my luck. People had always said about the weird way I held pencils and how I wrote, then I had obviously noticed how laborious it was for me to write, but I still thought it was just because I was left-handed.

I never got any questions about my walking from my pals but they weren’t slow in asking how I was getting this help. “I don’t know. It’s just because I’m left-handed and take longer to write,” I’d say with a sly smile on my face.

I remember feeling that I was ‘cheating the system’ a bit and that it was too good to be true but I seriously needed it so I never dared question it in case it was taken away from me.

It never gave me an advantage. It just put me on a level footing and gave me a fair chance. I would’ve failed everything without it.

*

After the prelims my friend asked me to go to a Scotland football game with him.

I was buzzing that he had asked me, but immediately I wanted to say no. Scotland were playing Spain in a qualification tie for the Euros, so considering the size of the game and how much I liked football, it shows how desperate I was to not be taken out of my comfort zone, and how my anxieties were ruling my life. My pal knew how much I liked football as well so it wouldn’t have made any sense to him if I’d said no.

I was desperate to say no, but I couldn’t think of a good enough excuse to use. I obviously wouldn’t say the real reasons why I didn’t want to go.

What had happened the last time I was at a football stadium was firmly in mind. How on earth would I deal with those steps again? I remember going through Google images looking at pictures of the steps inside Hampden, trying to assess how steep they were and whether there were any handrails going down them. There weren’t any handrails that I could see and I couldn’t tell how steep the steps were.

On top of this issue was the worry about the walk to the stadium. Where would we park? Would it be far from the stadium? Would I need to walk in front of a lot of people? What would my pal’s dad think? Would he ask questions? The stress intensified as the days passed. I felt trapped. I couldn’t say no but I couldn’t see how I could do this either. I had no choice but to mention it to my parents, I couldn’t deal with this one by myself.

My mum and dad both just encouraged me to go and told me I’d be fine, not exactly the help I was looking for, and it just added another reason into the mix for why I couldn’t say no. My dad now knew about this and I’d look weak and different if I didn’t go. Also, I was aware of how much I was isolating myself and how I was already saying no to most invitations from my pals. I knew if I kept this up then it was only a matter of time until the invites stopped.

So, I reluctantly went.

If I knew what the walk was going to be like beforehand, then I definitely wouldn’t have gone. It was exhausting. It was dark though, and I was wearing a hat so people couldn’t see how drenched in sweat I was.

I actually can’t say how far it was. I just put my head down and concentrated on putting one foot in front of the other until I reached the stadium. I don’t know how, but I stubbornly managed it. I was riddled with nerves and anxieties, desperate not to make a fool of myself in front of my pal and his dad. But also pumped with a bit of adrenaline which overpowered the anxieties a bit. I wasn’t able to keep up with their pace and fell behind them pretty quickly but I wasn’t bothered, I went into a sort of unconscious zone inside my mind, and my thought process shut down. The only focus in my head was on getting to the destination.

Once inside the stadium, my pal and his dad went down to their seats first. I waited until there was nobody behind me before I made my move. I went down one step at a time, standing for a minute with both feet on one step. Thankfully we were only about ten steps down.

Then going back up them when the game finished, I let everyone go past me again and waited a couple of minutes until it quietened down. I moved out onto the steps. I didn’t rush. My mind went back into that zone; I was calm, less bothered about what other random people thought of me, and concentrated on what I had to do. I took a moment to stabilise myself on every step again and leant over to hold onto the end-row seat if I had to. Thankfully the steps weren’t very steep at all.

Just like the walk there, I honestly have no idea how I made it up or down those steps. It was beyond the bounds of my abilities but I did it! I’m not religious, but somebody was looking down on me that night. I was absolutely buzzing when I got to the top; I hadn’t fallen and embarrassed myself. The high gave me the energy to get back to the car.

I was like a Cheshire cat in the car on the way home. I had done it. It was over. I was proud of myself and content. I went to bed with a smile on my face.

*

I never did very well in my exams that year. I was gutted. The changes that Friedreichs Ataxia caused; the relentless increases in anxiety and self-consciousness, it had all taken my eye of the ball.

I completely focused on my studies the following year. I would succeed, but in doing so I isolated myself even further.

My clumsy walk turned into more of a stagger as I went into sixth year. The anxieties, rage, and confusion continued to cripple me, and the self-blame narrative that was created by these emotions took a deeper hold. But I was able to pretend everything was fine through isolating myself, which was fine at the time but it’s something I’m still paying for now.

Mental health doesn’t recover quickly, especially when the damage is deeply ingrained. Even though I obviously know everything about Friedreichs Ataxia now, I still blame myself when my mood gets low. Years and years of feeling shameful and disgusted about myself have made this a very difficult habit to get out of.

I don’t think I actually have any memories that don’t relate to school from that year. I barely left the house unless it was because I was going to school. I was still only sixteen going on seventeen.

*

I never put my name down for any of the prefect roles at school. I knew that would involve being on stage at assemblies, and doing duties/tasks in which you’d be seen. I wanted to be as invisible as I could. I skipped assemblies on the days my registration class was to go on stage, and I didn’t volunteer to do anything that would help with my university application if it added any extra walking or standing on to my day.

I remember becoming almost petrified of stairs during that year.

My head would shudder uncontrollably going down one certain staircase if I got nervous enough – even with a bannister to hold on to. I have no idea why it happened, I thought it was just a mixture of intense concentration and anxiety. For a long time, I hoped that it wasn’t visible to anyone else, that it was something that felt worse than it actually looked. But one day my friend asked me about it. I had no answer for him.

I started applying to colleges/universities. I wasn’t really taking my applications to university seriously though; not because I wasn’t academic enough but because of my mental and physical health. All the subjects I had chosen to study that year were in the same area of the school as each other, so I was walking even less, and I could barely handle that, never mind manoeuvring around a big and unfamiliar university campus.

I began going through Google images looking at pictures of lecture halls from universities all over Scotland, hoping that I’d see one that had handrails and steps that weren’t too steep. Just as with Hampden, I never had any success. I never spoke to anyone about any of these worries. If I did, then these issues would’ve been put to bed in an instant. Like I said earlier, I didn’t know anyone who used a wheelchair or who had any other physical disability, as ridiculous as it sounds. I never once considered disabled access in university or anywhere else.

Never in my wildest dreams did I think of myself as disabled anyway. That word had a taboo around it, and hadn’t entered my head since I heard my mum say it to the policewoman years earlier. I was completely oblivious to the disabled world. I couldn’t associate myself with it even if I wanted to.

In addition to the increase in walking and the dreaded lecture halls, there was my poor mental health. That didn’t even need to come in to the mix before I decided to just go to college. I still applied to universities to keep up appearances.

Part 6

Memories of finding out about Friedreichs Ataxia.

1st February 2012

I was taking a break from revising in my room, and went through to the kitchen to talk to my mum. It was my grandad’s birthday and I wanted to find out what time we would be leaving to go and see him. Both my mum and dad were in the garden pottering about so I went out to speak to them.

I hurried back inside, keen to get out the cold and clear away all my revision notes before going to see my grandad. But as I headed back through the kitchen and towards the hall, I noticed a letter on the bunker; it had the NHS Lothian logo on it.

My nosiness meant I had to stop and take a look at it. It had my name on it but it was addressed to my parents. I had been to see a doctor – I didn’t know at the time it was a neurologist – at the hospital in Edinburgh a few months prior for my ‘nerve problem’ and this was a copy of the doctor’s letter to my local GP, giving an update as to how I was getting on.

I remember there being a list of the conditions I had, just above the paragraphs of text. 1. Asthma – yep. 2. Scoliosis – of course. 3. Cardiomyopathy – I knew anything with cardio in it related to the heart and for some reason, I thought it was maybe something to do with my asthma. 4. Friedreichs Ataxia – what the f*** is that? I tried to scan through the paragraphs below but my mind was already in fifth gear, scrolling through all my memories trying to think if I had ever heard the expression ‘Friedreichs Ataxia’ before. Only a small phrase from the paragraphs stuck in my head … ‘slight enlargement of the left ventricular but stable’.

What the hell is a ventricular?

I put the letter back down on the bunker, just as it was, so my parents wouldn’t realise I had been snooping.

However, unbeknownst to me, this was my mum’s plan all along. She knew I had to know about FA now but couldn’t find the right way to reveal the news to me. There was no right way, and she couldn’t bring herself to look me in the eye and tell me I had this genetic disorder. My dad felt the same. Therefore, this letter was left out on purpose knowing that my nosiness would get the better of me. That’s exactly what happened but instead of going back out to the garden and speaking to my parents about what I had just seen, I hurried through to my room.

My laptop was still turned on from studying, so I quickly opened Google and searched for ‘Friedreichs Ataxia’.

Shit.

I couldn’t believe what I was reading. It was gut-wrenching. Everything fitted together like a jigsaw, and made sense for the first time in my life; my incoordination playing instruments, my gait getting worse, my handwriting struggles, and why I even had scoliosis in the first place.

I’d hoped the first website had exaggerated the severity of the condition, but website after website said similar things. They were all in agreement about Friedreichs Ataxia. This wasn’t a joke or mistake.

I closed the laptop after reading the same prognosis about ten times, and looked down at my hands on the bed duvet. I remember pinching myself, like what I had seen on American films and TV shows but this was all real. There was nothing to wake up from. I wasn’t in a nightmare. I can’t really describe my emotions with any justice. Tears started to stream down my face and I got up from my bed and took a seat on the chair in my room. The tears stopped after a while and I just sat in complete silence, like I was a piece of bedroom furniture.

I was in shock.

The light had almost faded from the winter sky outside, and I was sitting in darkness when my mum came in. “Are you ready to go and see Grandad?” she asked. I turned my head so she could see my face and she immediately knew something was wrong. All I can remember was asking if it was true, did I have Friedreichs Ataxia and were the websites right about when I was going to die. The life expectancy was what had initially shocked me most about the terrifying prognosis of Friedreichs Ataxia. She just basically said that because FA is such a rare condition, doctors can’t accurately estimate things like that.

I don’t remember anything else from that night apart from getting to my grandparent’s house, and my mum going into another room with my gran to tell her about what had just gone on. My grandad was a man of few words, and with my eyes still bloodshot and bulging, he gave me a can of fizzy juice to cheer me up.

They are the only snapshot memories I have of that night.

*

I got up to go to school the next morning like nothing had happened, and continued to do so for a few weeks. Then on February 27th I had a university interview. It was also my seventeenth birthday.

Looking back, I find it amazing that I was able to go to that interview. It was a mixture of still being in shock and not wanting to let my parents down. In my head I had already decided not to go to university, but my mum and dad never knew that, and they’d be disappointed if I never went to the interview.

In the weeks before the interview, my feelings and emotions seemed to numb, and my mind sunk into a sort-of limbo mode. I could be seen, and physically appeared ‘normal’ to others, but inside I was neither here nor there. The bubble burst when I got home that day. My family came to visit and celebrate my birthday, but I had to go straight to bed. My body finally started to react. The anaesthesia it was under started to wear off. I was violently sick over the next few days and was off school for over a week.

When I started to perk-up I remember spending endless hours Googling research on Friedreichs Ataxia. I never normally go past the first page of search results but I’d often find myself ten pages in. Desperately trying to find news about a hidden treatment or cure that nobody knew about. How on earth can there not be at least one treatment to Friedreichs Ataxia?! No tablet, no liquid, no inhaler … no nothing! The only thing I could do to try and slow down the progression of FA was to exercise. Apart from swimming – and I wouldn’t do that out of fear of people seeing me – using a recumbent exercise bike was the only way to give myself a good workout that I could actually do. So, I bought one and put it in my garden shed before I returned to school.

Focus on exams took over again when I got back in the swing of things. The diagnosis and prognosis were put on the back burner.

*

After a couple of almost-ordinary weeks back at school, my mum told me about how there was a support group meeting in Glasgow for people with different types of Ataxia. It took me a few days to come around to the idea of going, but with the help of my guidance teacher – who had been brilliant with me ever since going back to school after finding out about FA– I decided to go.

I remember walking into the meeting, holding onto my dad’s arm – which I now did for a bit of support whilst walking when nobody I knew could see me. What I saw and heard was surreal and shocking.

Not only were people in wheelchairs but they looked severely disabled and immobile. A guy behind me had a machine attached to him which kept beeping and making weird noises. Then the ones who did walk were very clearly struggling. One lady used two walking sticks and she had a carer who also held onto her from the side. She then swayed about when she sat down and her head movements were all jittery. On top of all that, people spoke like what I’d imagine zombies to speak like – drunk zombies. It was so slurred, slow, and laboured.

This can’t be what I’ve got. This can’t be what is in store for me. It just can’t be. Maybe the doctors got the diagnosis wrong. Maybe I’ll be one of the unexplained miracles that flabbergasts doctors and Friedreichs Ataxia won’t affect me in the same way as others. I’ll be the golden boy.

It turned out that the meeting wasn’t a meeting at all, it was just a presentation by a doctor, giving a general overview of Ataxia. I didn’t learn anything that I hadn’t already seen on the internet. I did get speaking to the lady who was sitting in front of me at the end though. She was a doctor and had just retired because of the form of ataxia she suffered from. She gave me her email address and told me I could ask her anything I wanted to know, and rant to her about anything I wanted to complain about. She was someone to talk to who had more of an understanding of what was going through my head. That lady is now on the Board of Trustees at Ataxia UK – the national charity for people suffering with an ataxia.

*

My mum phoned and spoke to my guidance teacher at school while I was off sick to tell her what was going on. My guidance teacher then met with me every morning in my registration class when I returned, and I often bumped into her at different points during the day as well, and she’d ask about how I was getting on. She also sent emails to all my teachers telling them that I was going through a difficult time, and that would be the reason I might not be totally focused. I didn’t need this but I appreciated her being there and I felt like she genuinely cared.

My guidance teacher soon encouraged me to tell my pals about Friedreichs Ataxia, but I wasn’t too keen.

The morning after going to that support meeting in Glasgow however, I agreed to it, speaking to Harriet had given me a little boost of confidence. “That’s brilliant! You’re doing the right Thing,” my guidance teacher said with a big a smile on her face. She arranged for me to use her classroom to speak with my pals at lunch that day. I asked her if she could be there to support me and help with the conversation. The nerves kicked in as soon as I turned away from her. There was no turning back now. I was going to introduce FA to my pals, changing the way they saw me forever. I would never be just Connor again.

I told a few of my pals at break-time that my guidance teacher wanted to speak to them at lunch, so the ones who weren’t prefects would have to stay in for lunch as well. “What’s wrong?” “What is it?” “Are we in trouble?” “Tell us?” “Is it a bad thing?” they curiously asked. I enjoyed winding them up and listening to them trying to guess what was going on. It took a bit of the seriousness away.

I still remember getting butterflies going up the stairwell and into the classroom with my pals at lunch that day.

The teacher had moved around a few of the tables so we were all facing one another, and there was a McDonald’s bag sitting on one of the tables. She had got us half a dozen burgers. None of us were hungry as we had just eaten our lunch, but one of my pals took one for the team and scoffed a couple down just to show that we appreciated the gesture. My teacher sat down with us and turned to me and asked if I wanted her to talk. I nodded my head. She then introduced Friedreichs Ataxia and explained my situation to my pals.

I looked around the room really awkwardly and apprehensively when she mentioned things like using a wheelchair in the future – I wondered if any of them had remembered the rumours from that boy in second year, but nobody mentioned it. “Don’t think this will change the way we think of you,” one of my pals said when she mentioned this, and the rest of the boys backed him up. The only question I can remember being asked was if I would still be able to have children. None of them really knew what to say. We were all just seventeen- year-old boys.

The bell rang and the meeting was over. We stepped out the classroom and into the noisy, bustling corridor, and we all split up to go to our fifth period classes.

That was it. Like nothing had happened.

A massive weight had been lifted off my shoulders. The weight hadn’t just been there since finding out about FA, it had been there for years, I just had nothing to meaningfully talk about, explain or blame before.

*

The upcoming exams protected me, and kept me preoccupied until I finished school. Nothing had sunk in as I easily chose not to digest or process the shock of it. At school I was focused on my subjects and at home I was busy revising. I was occupied 24/7, I had a purpose, I didn’t have the time to overthink.

In one part of my schoolwork I was forced to think briefly on what had happened though. As part of my English folio I had to write a reflective essay, and I chose to reflect on my life. I found the essay on an old memory stick …

Life

The scorching sun beams all around, lubricating my body in layers of sweat, the electric light of the sun emphasizing the luscious blue of my football boots and kit. Fists punching through the air, my eyes wide with exhilaration, and legs leaping to maximum heights in the excitement of success. Freedom flowing through my hair in the light passing winds as I dashed towards my Father. With each stride I broke records and hearts. We had won the tournament.

Football, back then, was my life, and I believed nothing could destroy us. I was a young boy overloaded with the ambition and determination, to exceed even the accomplishments of my footballing heroes. Little did I know how soon things would change.

As we ventured back to Scotland from Selsey, the winners’ trophy was passed round the team coach reverently like a new born baby. However, while we experienced a tight corner the trophy fell off a seat and cracked. Gods’ way of foreshadowing the cracks which were about to show in my personal health. We laughed it off, after all the world was a place of no stresses, no worries, and no dangers. The sense of freedom and my good health, caresses my body as I pushed forward with life and looked for new challenges. Although my first sporting trophy was now cracked, I was not overly disappointed. The same did not quite apply to severe diseases.

Once fixed, the trophy shone like the sun, absorbing the sunlight streaming in through the living room window, nestled on top of the fireplace and proudly shouting out my achievement to anyone who came through the door. My football boots lay abandoned in the garden, still clogged with mounds of mud and grass, symbols of my triumph. But outside the grey clouds began to gather covering the skies as winter drew near. The combination of heavy rain and hail stones pounded off the window, acting as an appropriate herald for the horror which was about to be unleashed in my life.

It was my Great Aunty Helen’s 90th birthday. I loved birthdays, just as much as I loved life. Cake, crisps, biscuits, and fizzy juice were an obvious recipe for childhood heaven. I was a normal child! No differences, no disability, no self-consciousness. As I stood at the sink, upper body exposed, I cleansed myself for the upcoming party. My family busily hustled and bustled their way round the house, creating an exciting pre-party atmosphere.

“Connor come here. Stand over here a minute. Try and turn that way. David, come here a minute, come and see this.”

“What is it now Louise? Your shoes look fine. C’mon, hurry up” my Dad shouted, fed up of waiting, from the living room.

“It’s not that. Come here and look at Connor’s back” my Mum replied.

Silence. Had I gone deaf? Shocked faces looked at me, fingers pointing, hands maneuvering. An abnormal lump had appeared on the left side of my back, which grew in appearance as I bent over. The numerous ridges from the discs of my spine had begun to protrude my skin, revealing a curvature in my spinal structure.

That discovery meant life would never be the same again. Years passed and my body hit the milestone of puberty, and ultimately the end to my beloved football, due to the increased activity of my hormones rapidly increasing the rate at which Scoliosis crippled me. Hospital appointment after hospital appointment the anger and frustration built up inside of me. Why me? Why not somebody else? It is not fair! Why me? Denial continued to cloud over me, I was desperate to reverse the disabling curvature. After many failed attempts of enjoying sport again, it was clear the uncomforting and debilitating shape of my skeleton structure was doing nothing but increasing and getting worse. The pain was now inconceivable, to someone inexperienced of having something wrong with them. But things would get worse.

Light glossy grey, my x-ray hung in front of me, portraying the madness which was taking place in my body. I was moving closer to death’s door. The curve in my spine was moving closer towards piercing my lung. I was so full of rage. Why is this happening? What had I done? I wish this could just happen to someone else! The denial and frustration viciously raged inside of me. I was now a ‘sore-thumb’ of society, my normality gone. Tears aggressively carved skin from my young, innocent face, as my eyes bulged with devastation. Nature did not see the point of me anymore; he, she, or it wanted me dead. The only way to decline nature’s will, was for two rods of metal to be placed either side of my spine which would mostly recover the curvature. My life was now a scenario of man versus nature.

“Connor, come here, I know, I know, we will get through this, it will all be fine once it is over. Don’t worry, it will be fine…it will be fine”. My Mum said trying to comfort me.

From this point I knew that the care, comfort, and love from my Mum and Dad would be able to help me through this situation. They were my pillars. Something that nature would hopefully not take away from me.

After a hazy and impossibly long time spent in hospital, two lengthy poles were inserted into my back. From that moment on, they controlled and determined every step I took. They denied me the ability to play sports freely and fluently. Each day filled with anger, sadness, frustration, disbelief and pain – both emotional and physical. My body was under constant stress. Constricting the little self-assurance, I still retained in myself. I didn’t even have the confidence to have my scar exposed in public. However, these two rods of metal were, and are the only things keeping me alive.

But life has a habit of surprising me. Not in a good way. I have learnt that my body contains a far more serious disease than I first had knowledge of. Following a yearly appointment to the hospital, my mum was sent an update form stating the things I had wrong with me. I caught a glimpse of it. Two words rang out: “Friedreich’s Ataxia”. I immediately searched the internet before my parents caught me, which is when the real horror was revealed.

According to the internet I had a neuromuscular, degenerative disease which had many terrible consequences regarding my future; my life expectancy is severely lowered, heart disease, unable to walk unaided from my teens, slurred and slowed speech, diabetes, hearing and sight problems.

What just happened? I was so confused. Going onto further education and having plans for the future now seemed an extremely distant thought. Although I now see scoliosis a minor issue to have to deal with, it has given me the mental power to continue and fight against my genetic disease until a hopeful but not too distant cure is discovered. Until then the people closest to me help me to stay positive, shying me away from a pessimistic mind set.

After a couple of years of emotional disruption in my early teens, my body eventually fully recovered from the impact of surgery. Although the curvature of my spine is still at an angle of twenty-five degrees there is no longer any danger of death from it. However, just as I got over that hurdle, I was set with a new, far more daunting task, named “Friedreich’s Ataxia”. This disease is going to present a number of burdensome blockades in my future, however I am sure that as long as I have my family and friends beside me, anything is possible!

I clearly had a thesaurus open on Google while I was writing that, and I still can’t use commas properly.

After handing it in, I remember my English teacher asking me a question as she gave me feedback:

“What would be ‘better’… Being able to do certain activities for a limited amount of time, and then to have those abilities gradually taken away from you, or to have never experienced certain things, and therefore not having to experience the pain of the abilities being taken away?”

It was a dilemma. I couldn’t answer it so I never mentioned it in the essay. Almost seven years later I still can’t come up with a definite answer.

You might initially say that being able to experience things is ‘better’, but don’t underestimate the heartache and frustration from not being able to do those things anymore. Walking. Running. Playing sports. Dancing. Using ‘normal’ toilets. Being easily understood.

Having ‘normal’ eye movements. Having ‘normal’ hearing. Driving. Not knowing what fatigue or neuropathy is. I can go on and on. I can’t even laugh the way I used to as my muscles have deteriorated.

Personally, what makes Friedreichs Ataxia so difficult to deal with is that it is never just done. It is never finished. It is always working at degenerating your body. The ground is constantly moving beneath your feet. As soon as I get to grips with one thing, like my speech getting worse, another problem arises – like the coordination in my arms, hands, and fingers when eating meals. “Accept and Adapt” is a phrase I like, but saying it is far easier than actually living by it.

But some sufferers with Friedreichs Ataxia don’t get to experience things I have. Usually the earlier the symptoms show in a person’s life, the more severe the progression rate is, and the quicker the ground underneath their feet moves. They don’t get the chance to play in football teams or drive cars. Some children use wheelchairs before I was even diagnosed.

So, what heartache is worse? I don’t know, and it’s not about comparing and trying to prove who’s got it worse. It’s just about the common denominator that is in every FA’ers suffering

… Friedreichs Ataxia.

The main aim of me writing down my memories like I have done, was to try and raise a bit of awareness about the disease. FA is a rare condition and it is estimated that only 9% of the UK public have heard of it. This has to change if adequate funds are to be raised to find an effective treatment/cure. Ataxia UK receives no governmental backing, so people need to know about it to donate. Only 1 in 50,000 people suffer from FA, but 1 in 100 people carry the faulty gene that causes FA (the FXN gene).

I also wanted to do this in the hope that it might be able to help other parents who have newly-diagnosed children. By reading about when I noticed new symptoms and the things that went through my head, they might be able to talk to their son or daughter with a better understanding, and be more clued up about their behaviour when they experience changes.

Effective communication with their family is key for an FA’er to be able to live life despite the cards they have been dealt. I’m not great at communicating, which is pretty obvious having read this back myself, and reading this will be first time my family know about a lot of the stuff I thought about and went through.

If I knew about my diagnosis when I was younger then maybe this would’ve been different, and the burden on my mental health would’ve been eased. But I don’t know.

On the other hand, my physical health really benefitted from not knowing. I kept pushing myself to my limits, whereas if I knew about FA, I might’ve accepted defeat with certain things – like walking to lunch at school – a lot quicker. “If you don’t use it, you’ll lose it” is a well-known phrase in the Ataxia community.

*

I did really well in my final high school exams and got the grades I wanted. I was proud of myself. Academic success became my way of getting the feeling of purpose and achievement that I last got from playing in a football team.

I was offered places on five different courses at university and two different courses at college. Going to college was always my plan, and after learning about FA, it was easier to explain my decision to my parents and pals. I said it was because I had too much going on in my head to move away from home. Which was true but it wasn’t the full story. My confidence and mental health were still a wreck and the steps in university lecture halls were a concern.

After the summer, I went onto study accountancy and finance at the local college. I directed the focus I had for my high school exams on this and excelled in the following three years, achieving a degree with distinction. Within that time, I went from walking unaided, to using a walking frame, and then to using a wheelchair at my graduation – I had to be wheeled on stage by my dad to collect my certificate as I had fallen and broken my arm a few weeks earlier from trying to resist using a wheelchair.

Also, within the three years, I went on holiday with my pals twice, to Ibiza and Zante, and I passed my driving test. I passed not long after I started college, and not long after my graduation I had to give it up.

Four years have passed since then and I’m 24 now, and could’ve kept writing and writing. But I decided just to focus on my childhood and growing up with FA.

Thank you for reading!

Photo’s (2)

In my room playing the Xbox, where I was most comfortable growing up.

My high school prom. Remember noticing the staff staring at me all night at the place it was held and being questioned by the manager as to whether I was drunk or not. I had to show him it was an inhaler in my pocket, not a small bottle of vodka.

Done a skydive with my cousin, sister, and friend for Ataxia UK when I was in college. Not sure if I’d recommend it…

Being wheeled on stage at my graduation by my dad. Absolutely hated what should have been a happy night because of the wheelchair.

My mum, dad, gran, Olivia, Scarlett and I.

Scarlett’s football team is sponsored by Ataxia UK this season.

Using a beach wheelchair on holiday in Tenerife.

Still love going to Celtic games. Front row seats
now because of the wheelchair… being disabled isn’t all bad.