Group 5 (age 7-8) was a big year for me. So big that I decided to split this section of the series into two parts; one which I’m releasing today about the progression of my disease and the other about my social life at the time which I’ll share tomorrow. Group 5 was the year when how different I truly was to everyone else around me began to sink in, a lot of changes started to happen at school and with my disease and, in general, my ‘childhood’ started turning into a ‘disabled childhood’.
In group 5, I started falling down a lot. I could walk, but I tired from it quickly and when I became tired my legs would suddenly give way underneath me and cause me to fall. The more tired I was, the more often I would lose all control over my legs and fall down. It wasn’t that serious – I would often just dust myself off and continue running around, and the clinic gave me lessons on how to fall in the right position with my hands outstretched so that I wouldn’t hurt myself too badly. Falling was normal for me back then, it was just something that I learned to deal with. Unfortunately, the school and the clinic each decided to find a way to help me deal with it as well:
Changes at School
The school chose to help me by providing me with my own personal ‘Lunch Lady’ (which at the international school just meant someone who supervised children during break time (recess). They were often housewives who worked part-time at the school). It was the Lunch Lady’s job to follow me around every break and lunch, so that if I ever fell down or needed help, they would be there to provide assistance.
Of course, I HATED all of the Lunch Ladies who were assigned to me. No child wants to be constantly monitored or wants some adult hanging around while they’re trying to have fun with their friends. I got into quite a lot of trouble with the Lunch Ladies because I would do everything within my power to get them to leave me alone or to show them how much I detested them. Now I know that they were just doing their job.
There was only one Lunch Lady I got along well with: she was a kind, chatty Australian woman. I liked her because she treated me like I was mature and we had some great conversations together. Yet, she still gave me space when it was clear that I needed it, unlike the other ladies who constantly hovered behind me like a creepy horror film villain. I was stuck with these Lunch Ladies until I graduated from primary school. In the playground they made me stick out like a sore thumb and therefore became my first visual sign that I was more different than I had previously thought.
The other change at school was for gym class, but I loved that change: I was assigned someone to help me dress for gym and then help me out during the lesson. Looking back, gym class was probably the place where my primary school did the best in adapting things so that I could participate. I loved gym class, I loved the gym teacher and I loved every helper that I ever had for gym.
They were fantastic: they bought special equipment for me including a tennis racket which I could slide my hand into so that I could whack the ball with my hand and a shot-put which was extra light with a long ribbon attached to it so that I could spin it around in the air before throwing it. Every sports day, personal goals were set for me which I had to work extremely hard to reach and get medals for. I was physically tested, yet everything was done with my abilities in consideration so there was little that I couldn’t participate in.
Unlike my secondary school: who once had a Paralympic-themed sports day but I was the only one in the entire school who couldn’t join in. I just sat on the side-lines for hours in the hot sun, watching as teens ran around with blind-folds to play blind football or tied blocks to their legs to make it seem like they were running with prosthetics. I remember feeling bored, sad and, to be honest, a little offended – especially since I knew how well the primary school took care of me when it came to sports.
Changes at the Clinic
The clinic tackled the issue of me getting tired of walking and falling often by giving me my first wheelchair. She was pink with a picture of cartoon ballerinas on each of her wheels so I named her Rosie. Looking back, I wish that I had never received that wheelchair. I know that the clinic gave it to me with good intentions but I didn’t really need it. The only thing that I maybe needed it for was long-distance walks, but I seem to remember many family holidays with me power-walking in front of my sisters on long treks.
I was only a child at the time that I received the wheelchair, so of course I didn’t take it seriously and of course I only saw it as a giant toy on wheels. I used it more than I needed to and would ride around in it for ‘fun’. I didn’t realise that in the future over-relying on my wheelchair would have serious consequences.
Around this age, I started going to Scouts which is where I learned a lot about wheelchairs (including what it feels like to have an electric one roll over your foot (It’s agony)) and it was the place where I met other disabled people for the first time. I remember my parents giving me rules regarding how long I could spend in my wheelchair at Scouts because they thought that it was important for me to still walk since I could. I completely ignored these rules and spent the whole time in my wheelchair, once again not realising what the consequences of my actions would be.
When I think about this particular time in my life, I mostly remember spending ages crying in the bathroom. I would cry every now and then and ask God why, why me, why did I have to be the disabled one? All of these changes at school made me fully realise that I was different and I didn’t know what else to do with this realisation other than cry.
I spent quite a few years doing this, just all of a sudden bursting into tears and taking refuge in the bathrooms at school, and it would be a while before I finally cried myself out, started to accept my condition and the way things were, and just get on with my life. But as a child, accepting my disability was a pretty big pill to swallow and my frequent crying sessions were a sad but necessary step in me maturing and starting on a path of self-acceptance and appreciation. So looking back, I don’t regret them.
The Final Step in the Realisation that I’m Disabled
But the biggest moment by far of group 5 was the day that I found out the truth about my disease, a memory which even now has made me unexpectedly shed a few tears while writing about it: It was one of those days that I had been crying in the bathroom. I remember being upset because I had fallen down hard on my hands, because I had no one to play with that day and because on my way to the bathroom to cry about all of it, I had been whipped in the back of my heel with a skipping rope but no one stopped to say sorry or acknowledge me. All of this resulted in my usual ‘Why, God? Why me?’ bathroom weeping, which was pretty standard back then. The difference was that this time the Lunch Lady that was supervising me heard me crying and took me to my teacher to talk about it.
So, I went to my teacher and explained everything that went wrong and why I was crying. In the middle of my teacher’s attempts at pep-talking me into feeling better, she casually mentioned the fact that one day I would have to be in a wheelchair permanently. My jaw dropped to the floor and I burst into a fresh bought of tears. My teacher apologised: “Simone, I am so, so sorry. I didn’t realise that no one had told you that yet.” She dismissed the rest of the class so that they could go to their singing lesson (which in the back of my mind I was secretly happy to be missing – no one liked the singing lessons), put me to sit on a chair, called my mother to come to the class and gave me her favourite childhood teddy bear to squeeze.
The following conversation that ensued was one of the hardest slaps of reality I ever had to receive in my youth. Up until that point, my disease hadn’t really progressed, I just thought that things would be like this forever and never change. But that day, I discovered that my disease may progress so much that I may not be able to move anymore, and even worse, that we had no idea when or how fast everything would change. My condition was no longer simply something that made me the slowest when we played tag, or something that made me fall down a lot – that day it became something much bigger and much scarier.
So, I made a promise to myself; it was ridiculous and silly, but it’s still one that I’ll never forget: I told myself that if I ever did lose the ability to walk that I’d just give up on life, stay at home all the time and grow obese. I know that it was just nonsense thought up by a very scared eight-year-old’s brain, but this promise is still so emotional for me because of the reason that I made it: It was because I pictured myself losing the ability to walk when I was 50, maybe 60, years old after I had already lived a lot of my life.
A reality where I couldn’t walk anymore was so far away and unimaginable that I couldn’t even think of a future where I still lived a normal life in that condition. I never EVER in my WILDEST DREAMS imagined that just four years later I would be taking my final step – all because of that damned wheelchair and my own failures. I hate thinking about this day – looking back just reminds me of how utterly terrified I was of becoming who I am now (someone who can no longer walk), and how much I let that little eight-year-old girl down.