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/
So since just before I was born in 1996 my mum has been unable to have a job. Which a lot of people couldn't understand, and in fairness how could they.
They don't know what it's like to have your child born with bone deformities which changed everything. I can't imagine what it would have been like for my mum being told when I was just a matter of days old that I would never be able to use my legs or walk!
Well I have news for that doctor - he was wrong. But he could have been right if my mum had given up which luckily she didn't and never has. Oh and of course I was also diagnosed with a rare form of Muscular Dystrophy at the age of 4 just to add to the list.
So between then and now I have had more operations than me and mum could count on our hands and more hospital appointment/stays then you'll probably have in your lifetime.
So yes, technically that is what I have been though. But every time I needed to go to the hospital, whatever it was for, and when I was recovering for months from the long list of operations naturally its been my mum caring for me.
But then she really started going above and beyond. When I started doing sport it was mum who took me to 99% of my training sessions and competitions, on top of the normal taxiing around. I don't just mean like a Sunday morning football matches (well of course it wasn't football I was doing anyway, but you know what I mean). She was driving me every week to training camps, most weekends to competitions and even flew to a number of internationals with me (one as far as half way around the world).
While my mum has been unable to work I have been getting diplomas, medals and world records. Hardly seems fair in my eyes! But I barely hear her complaining about it. The tables have turned now though.
Ever since my not so little brother (teenager - say no more) started at Primary school mum has volunteered down there a number of times a week and all that voluntary work has turned into her first job since I came into the world.
I will always need my mum, as pretty much everyone does, but shes the reasons I have been able to get to where I am today and now it's her time to help another do the same.
2016 threatened to be one of our hardest years to face yet, but every cloud has a silver lining and although mum may not have flown out to Rio with me to see me compete in the Paralympics. I am a BBC Reporter and she is a Teaching Assistant. I think that qualifies at Christmas coming early to the Hopkins Household!