Derek, Victoria, 12 hours Speechless
Derek shares his experience of stepping up tot the Speechless for Rett Syndrome challenge!
How has your life been touched by Rett Syndrome?
Derek: I wasn't aware of Rett Syndrome until recently when I came across the daughter of a friend who suffers from this debilitating condition. I've learnt how challenging it is for her, and for the people around her. It has reminded me how grateful I need to be for the simple things I take for granted, such as movement and speech.
Why did you decide to take on the speechless challenge?
Derek: I felt like giving back, starting with a little time and a little money, and spreading the word to my online community to help raise awareness. I also knew it was something my friends, family and partner would love to see, me being quiet for a day!
What was the hardest part of it for you?
Derek: The hardest part was the fear of breaking it. The night before I kept dreaming that I spoke and was immediately found out for having failed the challenge.
Then I decided I had to extend my time by half an hour as during my morning walk I shouted out hello to Barry, a neighbour's bird, and quickly scolded myself for breaking the challenge so early on! When my partner came downstairs in the morning, I put masking tape on my mouth just to prevent myself from saying the usual pleasantries or asking questions. I didn't do that all day, but it was to help get going in the right direction of the challenge. Watching the rugby was by far the hardest, there were a couple of close calls for the challenge during that. If I were to do the challenge again I won't be watching the Wallabies...
Was any part of it easier that you thought it would be?
Derek: The fact my partner slept in certainly helped. Once I left my phone to the side and removed it as a distraction, not looking at the screen, that made it easier as not seeing messages I didn't feel compelled to reply.
What did you learn about Rett Syndrome through this experience?
Derek: I learned how the limited number of words on the communication sheet really reflects the experience of many people with Rett Syndrome. They often can't even point at words, and may rely on alternate means of communication that are tiring and frustrating to use. Also, having a greatly reduced vocabulary really brought home how frustrating it must be to be fighting this part of Rett Syndrome every day.
Any advice for someone considering taking on a speechless challenge? Derek: Sign up as soon as possible! And let people know well in advance to get their support, encouragement and raise awareness !