Today is MND Global Awareness Day. I remember 2013’s MND Awareness Day, just after Dad had died. Nobody knew very much about MND; the ice bucket challenge was yet to come, as was The Theory of Everything. We’ve come so far with raising awareness, but today will help us to raise the profile of MND even more.
This year’s Motor Neurone Disease (MND) Awareness campaign is called ‘Shortened Stories’. It highlights how many people’s life stories are cut short by MND; 50% of people die within 2 years of being diagnosed.
On the 1st June my fellow committee member from the MND South London group suggested that the group could use MND Awareness month to share the ‘Shortened Stories’ of our families and friends who had inspired us to volunteer for the Motor Neurone Disease.
I thought this was a fantastic idea, but it also filled me with dread, as it would mean I would have to write about my Dad’s story, which was cut short in April 2013. He was 49.
Let me set the scene for you: my Dad really was the life and soul of any party. He was known for it, among family, among his friends, among my friends. When I was 17 I secretly invited about 25 friends over for a party and, rather than kick them all out, he shrugged his shoulders, put some music on and got cooking a chilli for everyone; this is the man he was.
He was a huge sportsman – watching and playing. We’d spend every other Saturday watching Huddersfield Town play; he coached the Scratch Team at the golf club to victory; he played football, golf and cricket, and taught me, my brothers and my sister to do the same – we’d often have a kick about or a game of cricket on the back lane.
When I found out he was going to die, I was surprised not to hear the noise of my heart breaking.
He lost his voice within months; I used to have dreams where he would talk to me. I’d wake up in tears when I realised it was just a dream. He was dead within 4 years, and I know we were lucky to have him for that long.
I could write about what his life would have been like for pages and pages, for he was always doing something with us, or with his friends: instead I’ll keep it very brief, and selfishly, only on the shortened story of Man and Eldest Daughter:
Since Dad died, I have graduated. I’ve transitioned in to the life of ‘proper work’. There was the first Christmas without him going downstairs first, and saying ‘he’s been!’ There have been two more Christmas’ since then. There have been family holidays without the chief planner. I moved to London. I met the love of my life, and he asked me to marry him.
There will be a Huddersfield Town season ticket, without him sat next to me. There will be a ‘first home’ where he isn’t there to help do the DIY. There will be a wedding without a Father of the Bride speech. There will be his first grandchildren, who will never know him. There will be countless occasions where he will be missed so sorely that it often feels like my heart is breaking all over again.