The Wheelchair Teen

This is part one of two posts I plan to release this weekend about being a pen-typer. Because I don’t have enough mobility in my fingers to be able to hold a pen, I type and write with a pen in my mouth. First, I thought I’d tell the story of why and how I learned to type with a pen in my mouth and tomorrow I will share a post which will be about the logistics of typing with a pen with a short video demonstration.

I used to be able to write and type perfectly well with my fingers. Yes, they were curled, but I still had enough mobility within them to be able to grab a pen and use it like anyone else. However, during my first week of secondary school at the age of eleven, I woke up one morning to find that I had lost all function in my right hand. I went around the rest of the day as usual, assuming that I had slept on it awkwardly and that it would pass away soon.

However, over the course of the next few weeks, it finally began to sink in that my mobility was never coming back. The word ‘progressive’ had always been tacked on to the beginning of my disease diagnosis, but I had never given it much thought before this. This incident was the first change in my disease since I was a toddler (the first of many to come) and it had happened so suddenly – all I had done was wake up and it was gone.

I was right-handed, so the loss of function meant I could no longer draw which was my favourite hobby at the time, write or grab anything with that hand anymore. This started to instil a fear in me that my disease may progress further at any moment and I might lose something else I treasured. I spent hours curled up in bed crying, asking the universe why it had bothered to give me something I had loved if it was only going to take it away. I lost my love for drawing, and overall, started to give up on things. But this all changed after a suggestion from my second-eldest sister.

She had told me when I was much younger about a film she had seen in her Christian youth group about a woman who had started writing and painting with a pen in her mouth after having been paralysed from the neck down in a diving accident. The woman’s name was Joni Eareckson Tada. My sister suggested the idea of me trying to write with a pen in my mouth too, but at the time, I scoffed at the suggestion because I was unable to imagine a day when I couldn’t simply grab a crayon with my knuckled fist and drag it clumsily across the page.

But now she posed the idea again and we watched the film together. I will never forget that moment, sitting on the floor in our parent’s room as we watched Joni on our parent’s tiny, crackling television. People can rarely claim that a film has actually changed their life, but I can safely say that I have no idea where I’d be today if my sister hadn’t stumbled upon this one.

After it was over, I reluctantly agreed to try the different method of writing, not really expecting much. I know my eldest sister doesn’t remember this, but she was with me the very first time I tried it; I’ve even kept the two blue pencils we used during that first time. We messed around with the pencils and paper, holding it in our mouths all wrong and generally having no idea what we were doing.

After a while, she left to do other things but I stayed and continued, intrigued by the idea. After ten minutes I was writing sentences, after twenty I had made my first drawing of a dog. Everything was boxy at first but I was starting to get the knack of it. After a little while, I realised that I had taught myself how to write with a pen in my mouth. My sister described it as watching me go into a room with a pencil and paper and then watching me come back out an hour later seeing that I had mastered the skill. In truth, it took me many more weeks until I had truly perfected it.

I practised during my art lessons at school. My art teacher was very supportive since, without the ability to draw, I couldn’t do much else in her class anyway. We tried numerous methods: drawing upright by sticking a piece of paper to an easel so that it was closer to my face, sticking a piece of paper to the desk when I decided writing on a table was easier, wrapping tape around the top of pencils so that they wouldn’t taste like wood and lead, etc. It was peculiar learning to write all over again in secondary school, and even though there were hard days, the only memories I have of those hours and hours in art class were ones of fascination and discovery as I learned something new about writing with a pen in my mouth almost every lesson.

Soon, I realised the skill transferred to other things so I tried typing with a pen in my mouth. At first, it was nothing but ink explosions and hours washing the ink off my tongue, but I soon got the hang of that too. It caused my typing speed to increase and suddenly my 3,000-word essays turned to 5,000, 6,000. I did everything with a pen in my mouth: pressing the buttons on television remotes, using calculators, sending messages on my phone, scraping dried dirt of my desk… everything, and I still do.

But most of all: I drew and drew. It felt like something I had lost had been returned to me, and in even better shape. Everything had improved – my typing, my writing and my drawing. And now that I knew what it was like to be without it, I appreciated it more than ever. I’m happy that my fingers were the first parts of my body to deteriorate because the story of how I learned to write with a pen in my mouth was one which taught me the power of resilience and determination, values which a care-free eleven-year-old like me had absolutely no idea about but would sourly need if I was going to face the challenges I would be presented with later on in life.

It meant that the next function I lost was less about mourning the way things used to be and more about finding alternatives and solutions, because if I could learn to write again without even using my fingers, then who knew what else was possible? This was my big ‘waking up’ moment – time to realise that my life was going to be different to most and that it was going to be up to me how I handled what life threw at me.

I couldn’t imagine my life today without the ability to write with a pen in my mouth. Without being able to write or type I may have struggled with my schooling and not have been able to write the poetry and stories which I enjoy writing today. So, of course, I have to thank my second-eldest sister. I truly don’t know where I’d be now without her incredible idea, one which I never would’ve been able to come up with on my own. And, of course, I also have to thank Joni Eareckson Tada who will probably never realise how many lives she’s changed with her story. Although, apart from Joni, I still haven’t seen anyone else writing in this way and I would really love to.   

See you tomorrow for My Nugget of Wisdom for the Week: How to Write With a Pen in Your Mouth where I’ll demonstrate what typing and writing with a pen looks like. Have a great Saturday!