From London to York with the MND Association 

When I first started writing this blog post, I expected it to be a rundown of my volunteering in my last few months in London, and my first few in York. 

However, as I started writing, I realised there was more to it than that: there was the unspoken battle that raged in my head as I debated taking a step back from volunteering for a while. 

I was busier those last few months in London than I realised: from attending the annual campaigns contact weekend to sharing some ‘youthfulness’ at Dave Setter’s Working Better Together event, from sharing my Dad’s, and my family’s, journey with MND with a group of teenagers on the NCS programme, to dancing the night away at Daisy’s summer ball.

As my time living and volunteering in London came to a close, I surprised myself by finding myself debating whether our not I wanted to continue volunteering with the MND Association when I moved to York. I questioned whether I was causing myself unnecessary sadness by spending so much time in such close proximity to this horrible illness. I wondered whether there was any point: how much could I, just one volunteer, achieve when I hadn’t even been able to do anything to help my own dad?

Every time I emailed my MP, or a councillor, I was reminded of how I didn’t lobby on my dad’s behalf. 

Every time I fundraised, I was reminded of how I did not find the money to improve my own dad’s quality of life. Now I realise that to have been able to communicate with dad would have been priceless, and I will regret not making that happen for the rest of my life.

Every time I heard of someone being newly diagnosed with MND, or I heard of someone with MND passing away, I was reminded of dad’s diagnosis and death, and I felt it so keenly that it could have been yesterday. 

Every time I questioned whether or not I was doing a good enough job as a volunteer, I was reminded of how I did not do a good enough job as a daughter when my dad was alive.

In the end, after much deliberation, I decided that I would at least find out what was going on in my soon-to-be-hometown of York. When Sarah Milner told me that a group was being set up but hadn’t even met yet, I felt like somehow it was meant to be.

Since moving to York in September, I have chatted to my new MP, Rachael Maskell, in parliament, gone along to my first support group, met with other new volunteers who will make up the new York group, met JC, campaigns manager in the north, to get the lay of the land and make a plan of action, and also found myself tweeting from @MNDAYork. 

And so I guess, that for now at least, you’ll find me in my blue t-shirt, doing my best to make a difference for people living with MND.


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