This story originally appeared in The Information Point newsletter Our World in 2016, when Sukhi, from Milton Keynes and diagnosed with myotubular myopathy, went skiing for the first time in memory of her friend Tom, to raise funds for the charity SpecialEffect. The charity works with severely disabled people to use computers with whichever parts of their body that work best, enabling vital inclusion, specialising in eye control technology for those paralysed and unable to speak. Sukhi sadly passed away not long after this article was published.
My name is Sukhi and I’m 26 years old with myotubular myopathy. Tragically, I lost a friend recently and he used to always encourage me to go skiing. I’m not the most adventurous type and never one to be keen to take risks. I stubbornly refused because the mere thought of it terrified me too much.
But when Tom left this world, I decided to embrace the challenge and live out Tom’s wish for me and raise money for a charity which meant a lot to him, as it helped him access gaming, something that he loved. Tom used to say to me ‘you need to live more and don’t be such a wimp’, so it felt like a fitting tribute, to keep Tom’s memory alive, support a charity which meant a lot to him and I hope it made him proud.
So, I rallied my friends around me and off I went. I live in Milton Keynes and we have our own indoor ski slope so I didn’t have far to travel. My friends traveled a fair distance to ski with me but as they knew they’d be entertained by me freaking out, I’m sure they didn’t mind.
The weeks leading up to the big event were spent worrying about all the things that could go wrong, panicking over what might happen. But I knew this was something I had to do and the sponsors I received for the charity and kind messages of support from family and friends really helped.
The big day finally came. I went skiing and absolutely loved it. It was the best thing I have ever done and is something I’ll definitely do again, maybe even regularly. I sat in a sit ski and lots of straps kept me secure. I was unsure whether this would be comfortable but foam padding was added to make the ski more comfortable. All in all it was great. Then, the instructor puts on a set of skis and a harness and attaches himself to your sit ski. Safely attached and away you go.
Going skiing made me realise just how much my fear holds me back. I avoided going for such a long time because I was too afraid of the possible dangers. How silly is that? At the end of the day we only have one life and should embrace every opportunity with both hands. Whilst I can’t change overnight from being a super wimp to being fearless, I can certainly try. Because after all, fear is just False Evidence Appearing Real.