What does it take to be a teenager with a progressive disability? The answer is bucket-loads of patience and determination. It can take me much longer to complete ordinary tasks than most other people so I often need patience to see it through and determination to help me do it.
If you know me, you know that my story isn’t that different from most people with a progressive condition: I started out with the ability to walk and with the full use of my fingers, but gradually lost more and more function as I hit puberty. I’ve talked before on this blog about how difficult these changes were. While all of my other school friends were growing up and changing, it felt like I was stepping backwards as more of my body started to grow dormant. The doctors used words like: “deterioration” and “decline”, which were horrible words for an eleven-year-old girl to hear.
At first, I was terrible at dealing with these changes. I spent a lot of time crying and feeling sorry for myself. It took me a while to realise that, if I was going to be able to survive with my disability, I needed to realise that my body wasn’t like most others: I would have to find different ways to do things, and it would probably take me much longer to do them – but that didn’t mean that I couldn’t. I used to have a very short-temper so patience was not my strong suit. However, I was going to have to teach myself to be tremendously patient with my body to give it time to adapt to being different. The first step was familiarising myself with what I could and couldn’t do and seeing things from a different angle:
I familiarised myself with my strengths and weaknesses: I knew that I wasn’t as fast or physically able as the other children in the playground. But I also knew that I had an incredible imagination. I therefore created fun games with my class that allowed me to be able to participate when I was younger. My favourite was called ‘the Mario Galaxy game’ and it was based on the Mario Galaxy Wii Game. In the Wii game, Mario has to jump every time Bowser hits the ground with waves of destructive energy or else he dies, and he has to stay on the thin, grid-like path around him or he falls off the edge and loses the level.
In the game that I created, I was Bowser so I could run anywhere and I had to try and catch everyone, but everyone else had to run along the lines that the bricks in the pavement created or else they were out. And whenever I jumped, they had to jump twice to escape the ‘waves of energy’ that Bowser would create in the game. These rules help put me and my other young classmates on the same level as we played tag. This is just one example of the games that I created which secretly were made to be easy for me to join in with, while still being fun for everyone else. I was known for my enjoyable, creative games on the playground, and my imagination therefore outweighed my need to be the strongest or fastest child in the class.
I taught myself to see things from a different angle: I look back on my last year of primary school as an exciting year of discovery and adjustment – I spent a little less time crying in bathrooms and a little more time accepting my disability and simply living my life. By now, I had grasped the concept of being creative and fighting to find different ways to do things. I saw each new situation I was presented with as a challenge that I had to conquer, so almost every day was a discovery of some sort of trick I could use to be more independent.
For example, I found it difficult to handle small objects because of my curled fingers but I found out that they’d stick to me if my skin was moist. So, I’d lick the knuckle of my pinkie finger and then tap my pinkie on the sequin or Hama bead I was trying to pick up and it would stick to my finger and I could lift it. When it came to picking up slightly heavier small objects like coins, I’d simply slide them to the edge of the table and onto my palm below.
Last, but not least, I discovered that I could do anything if I was determined enough to see it through: Once, my mother placed my headphones on the highest shelf in my room so that I couldn’t reach them as a punishment. However, I stubbornly spent all night cleverly creating a device to help me retrieve them and was determined not to stop until I had succeeded. The device was made up of two storage chutes: I filled the first with all of my blankets and cuddly toys so that they could break the fall of my headphones, and attached my typing splint (which looked like an arm cast with a metal hook on the end of it for typing) to the other chute which I placed on top of everything inside the first.
All I had to do then was lift both chutes as high as I could above my head and use the metal hook of the typing splint like a fishing hook to try to latch onto the wires of the headphones. It was hard to do because I couldn’t see the hook from the bottom of the chute and it was difficult to lift but finally, after three long hours of making the device and trying to use it, I was able to successfully hook onto the wire and cause the headphone to fall perfectly into the chute filled with stuffed toys. I was an extremely determined (and naughty) child and nothing could stop me once I put my mind to it – certainly not my disability.
During my first year of secondary school, I taught myself how to write with a pen in my mouth after I lost the function in my fingers. It took many hours of hard work to get my drawing to the level where it is now. And, yes, I was extremely upset after I woke up to find my left hand not working anymore, but I was determined not to give up my ability to draw or write. Now, I’m planning on writing a novel – and hopefully, by the end of this year, I’ll have an official certificate that will allow me to work as a graphic illustrator which I’m currently studying for. Writing, drawing, and designing are my passions so I’m so happy that I didn’t give up on them.
In conclusion, patience and determination are two factors that I wouldn’t be able to live without. Even now, it takes me much longer to do things than most people – but it takes me even longer to give up. I hate litter: When I’m at school and I drop something on the floor, it doesn’t matter how long it takes me, I won’t stop until I pick it up and put it in the bin. It takes me around five solid minutes of wrestling with food packages for me to be able to pick them up off the floor when I’m in my wheelchair. Picking up paper and books takes me even longer, and merely the act of leaning over and trying to use my fingers is a real work-out for me. But I’m passionate about not littering, especially when I see some of my able-bodied classmates calmly walking away from their rubbish which they drop carelessly to the ground, centimetres away from a bin. So I fight to uphold this value – no matter how hard it is for me to do.
I’ve learnt that if I truly want something – to fight for it and not give up. And that there’s always a way to do things with the skills that I have at my disposal. I could learn a little something from eleven-year-old me: she was creative, smart, and knew her own strengths and weaknesses. But most of all, she was patient and determined when it came to things that she couldn’t do. In what ways have patience and determination affected your life? See you next week!