My childhood started out as any other childhood usually would. When I started school, I loved sport, reading books and watching movies as any other 5 year old would. Pretty standard stuff. At my Grade Prep school sports, I was one of the fastest runners in my whole grade, which I was pretty stoked about, and anyone who knows a 5 year old knows they love to run around quickly and move freely. I was no exception. Fast forward to my Grade 2 school sports and I came dead last in running. This seemed pretty odd to me, so I asked my teacher why I was suddenly so slow and she told me that I must have slowed down as I was getting older, as a normal part of life I suppose. That seemed fair enough to me, however I couldn’t understand why it wasn’t happening to any of the other kids.
Not too long after this, the falls started to happen. I found myself falling over multiple times a day for no apparent reason. I hadn’t made any drastic changes to my daily activities, however now many of them would result in me heading to the school office to get band aids put on my bloody knees as a result of falling over playing footy at lunch time or doing PE class. I thought I was just being a bit clumsy and needed to take more care.
As Grade began, I was fortunate enough to have my dad (Leo) as my teacher. As you can imagine, having my dad as my teacher meant that we spent a lot of time together, and us spending a lot of time together meant that he began to notice that things weren’t quite right with me. The way I walked was becoming slow and sluggish, and I needed to take breaks from walking often, I would arrive home from school each day with no energy after doing nothing out of the ordinary.
After seeing enough changes in me over a short period of time, dad took me to see a doctor. The first time he took me, the doctor looked over me and believed everything was fine, brushed it off as a growth spurt and left it at that. However, being the persistent (and sometimes stubborn) man that he is, my dad took me to get a second opinion from another local doctor who was quite concerned, referred me to a specialist in Shepparton, who then referred me to a specialist at the Royal Children’s Hospital in Melbourne. Not long after I was given an official diagnosis of Facioscapulohumeral Muscular Dystrophy (FSHD).
Although a diagnosis was a sigh of relief as we now had a reason for the rapid changes in my physical abilities, we now had to prepare ourselves for what my life with FSHD would look like, and the impact it would have on me both Immediately and into the future. Having my dad as my teacher made it quite easy to make adjustments in the classroom and in the school environment for the remainder of my primary school days. Such adjustments included having my own chair with armrests and wheels to make it easier to get out of and move around in, being excused from physical activities such as PE class, swimming and other sporting events. I was also taken out of class once a day for 30 minutes to complete an exercise program organised by a physiotherapist to try and stop the deterioration of my muscles. This was something I absolutely hated as when I was younger I hated being singled out and treated differently than the other kids. I desperately wanted to be normal, to not stand out from the crowd, to not have people stare at me while I walked down the street. However I knew that this was something I would have to face when I made the transition from Primary School to Secondary School. As I was heading up the highway to FCJ College in Benalla, with none of my close friends from St Johns coming with me, it was daunting to have to make new friends when the first thing people would see when they looked at me was my disability.
Despite my fears, I ended up finding it quite easy to make friends by simply being myself, (such a ridiculous cliché I know), I was able to find people who had similar interests to me, such as watching sports and wasting a lot of time playing video games. I had a healthy social life during secondary school (perhaps too healthy at times) because I continued to be myself and not try to be someone I wasn’t, and was fortunate enough to become friends with people who were happy to include me, at times give me a helping hand, and not make me feel uncomfortable about my disability. For example if I had a fall at school, I had one friend in particular who would pick me up off the ground, I’m not really sure how but he became the man for the job, everybody else knew it and it’s just the way it was. We didn’t make a fuss about it, he’d just pick me up and we’d carry on with what we were doing, just the way I liked it.
Throughout my life I have had various experiences and met various people who have allowed me to become more resilient and to overcome the adversities I have faced. I remember on one of my first visits to the Royal Children’s Hospital, I was having lunch with my parents and on the table next to me was a young boy who had extremely severe burns covering his entire body, his legs had been amputated, he only had two fingers on each of his hands and all of his skin was scarred.
At the time I was only 9 years old and this was quite confronting for me to see, I looked at that boy and thought to myself, “no matter how bad things may get, it could always be worse.” I still think about that moment to this day, and it makes me appreciate what I still have and what I am still able to do. I believe it is important to keep a positive outlook on life, as focusing on the negatives will only hinder you from living a happy and carefree life.
I have also been fortunate enough to travel to the Philippines where I lived in a remote rural community for 10 days to assist in creating better lives for people who have lost their homes to Typhoons. This was an eye opening experience which helped me to appreciate the small things in life we take for granted in Australia. If I had been born in a country like the Phillipines, my access to healthcare would be extremely limited compared to what I have here in Australia, and the thought of this has helped me appreciate the things I have, instead of focusing on what I do not.
The most important inspiration I will share with you is my step mother Sonia. Around the time I finished year 12, Sonia was diagnosed with metastatic breast cancer, an unforgiving form of cancer with a slim survival rate. Sonia was told that her time on this earth was limited, so she decided to live out her remaining years doing the things she loved, with the people she loved, travelling overseas, doing photography and arts and crafts. She believed there was no point in wasting her life doing things she didn’t enjoy. Despite her health condition, she remained positive and was able to live out her remaining days happily and carefree, which in turn gave me so much motivation to not give up and to keep living my life, no matter how poor my physical condition becomes.
Although my condition is ever deteriorating, I still try to actively do things I enjoy such as attending concerts and music festivals (with the assistance of a wheelchair and a good friend), being involved at the local football club, and going on trips with my dad. I try to focus on the here and the now, not to mourn my past physical capabilities, and not to ponder future deterioration. Living with FSHD may be very difficult at times, however I am extremely fortunate to be able to still live a happy life.
I play with the cards I am dealt, and will continue to do so into the future.
Shaun Jones, 23