Every year the Charity Muscular Dystrophy UK host an event called the Spirit of Christmas at a number of different Cathedrals around the country in hope to raise money for the charity ahead of the festive period.
I have attended the event at Gloucester Cathedral since it began and the changes seen between now and then are unimaginable!
My favourite memory of this event has to be the year I had surgery on both hips and my right lower leg too. I vowed that I would be up and walking in time for the big day so that I could light the fire candle on my feet. It was very hard work and I wasn't up for long but I did do it!
Each year I light the first candle and on a few occasions I have given a speech. My speech last year went a little like this:
"This event is called the Spirit of Christmas, and being someone who has OCD (in this case Obsessive Christmas Disorder), I associate it with the story of The Christmas Carol. Where Scrooge is visited by 3 spirits. The spirits of past, present and future. I’m sure everyone here knows the story. If not, you're going to hear a slightly different version now; mine.
You know those roller coasters that have the big ups and downs and the loop the loops? Yeah I think that describes my past. I have had some really low lows like numerous operations and stint in intensive care in January 2012 to really high highs like tossing the coin at Wimbledon and Skydiving. Oh and representing Great Britain of course. I believe that everything happens for a reason whether it’s good or bad, it’s a learning curve either way. Excuse the archery pun here but I think this sums up what I am saying well. Life is like an arrow, you have to be pulled back before shooting forward into something amazing. So keep aiming.
Christmas is a time of giving and receiving which people will link to presents. I much prefer giving presents. Using the Christmas spirit to plan and pick gifts carefully, to work out what to paper and ribbons to wrap things in and to see people’s faces when they open them. That’s what I am doing with my present, not the gift kind, but my life right now. I’m taking my time to plan out and make choices carefully. I’m wrapping things up in packages, but not in bubble wrap for sure, and I guess I’m not exactly giving things to my friends and family, but there seems to be smiles on their faces because things are on track. At last.
Which leaves the future, and I can promise you mine has a better future than Scrooge’s did. My last year has been spent recovering from a bug I picked up in Bangkok that hit my tummy hard and breaking my thumb again so having surgery. I have been back into training around 4 weeks now. The next year will be full of excitement. Finishing my college course, and ultimately working toward making the Paralympic Games in Rio September 2016. For any athlete making a games is hard work, but for people like me, with conditions like Muscular Dystrophy, it’s a little bit more of a challenge. It’s a good job I like a challenge!
I guess this is my point here. The past, present and future I have just told you is mine, in a nutshell. Just one person’s story. There are thousands of others out there facing the same thing. Just like Scrooge, he was only one person who got visited by the three spirits that night. Just think how many other people they had to get round. That’s what Muscular Dystrophy UK do. They are the spirits who show people the way when they are lost. Whether it’s struggling to cope with a diagnosis, finding it hard to find the money for equipment or general needing someone to talk to. They do it all. But it is a charity at the end of the day, they can’t do all this without funding.
Just to put this into perspective for you. £16 ensure parents get advice and support after diagnosis via free phone helpline service, £35 support for family for a week, £44 pays for one hour of research, £1897 provides medical beds, £2500 provides trained advocacy ambassador in every region. Some of these figures are high, but penny’s make the pounds as they say so it all adds up. There has already been so much progress made, I want to make sure it continues.
When my day to day life was made easier, it allowed me to make the most of the rest of my life. I wouldn't be the person or athlete I am today without my nearest and dearest, and of course the charity. With a condition like Muscular Dystrophy you never know what’s going to happen next, so making the most of every day and every opportunity is important. So at this time of year, a time for joy and giving, please help me give others with the condition the opportunities that I have had. It is about accepting what is, let go of was and believe in what will be, and with your support it will be a bright future."
And although I may not be speaking this year I enjoy taking in the atmosphere, catching up with old friends and hoping that people help us raise the necessary fund to continue to vital work to change peoples lives with the condition.
So if you are thinking you would enjoy an evening of carols by candles light that can make a big difference? Why not see if there is a Spirit of Christmas event near you: http://www.musculardystrophyuk.org/news/news/come-and-join-us-for-a-magical-evening-of-carols-and-festive-readings/