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.
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
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.
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.