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.

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