Nothing Else Matters...

June 3, 2024

I've started writing this post about three times over the past few days. Reading back over the initial drafts is difficult. I was feeling quite sorry for myself and unloading all of my frustration onto the blog. I needed to rant about all the things MND has taken from me, all the things I want to be able to do that I can't, and never will again.

Life has a way of giving you a massive reality check at times though doesn't it?

On Friday I was told that Val Franklin had passed away, then on Sunday we found out that Rob Burrow had lost his battle against the disease. A stark reminder that at present there is only one winner when MND is involved.

I'm guessing that some of you reading this may well have known Val and so are fully aware of the lovely person she was. I first met her next to the 18th green at Rushcliffe Golf Club, as we waited for a group of ladies to finish a '72 holes in a day challenge'. Raising money for Stand Against MND. Val was one of the first people I'd met in person who also had MND. At that time I was visibly more advanced in my progression than Val, in my powered wheelchair and reliant on my ventilator. A casual observer would never have known we had the same illness.

Val would later tell me that she found that first meeting quite difficult. Looking at me was frightening, like seeing what the future could hold. To their enormous credit, Val and her husband Pete agreed to come over for a cup of tea to pick my brains about my journey. Nobody ever warns you about the mountains of admin that come with a degenerative disease, and if you don't keep up with it at your end you might not get the help you need. I'd been through a lot of it and I hope had a few useful tips.

Opening up and wanting that information takes immense courage. It shows in my view an acceptance of your circumstances, and a determination to make the most of the time you have. I'm so pleased that Val and I shared that outlook.

You would never have known what we were discussing based on the amount of laughter in the room. I was left with that familiar feeling of confusion as to why MND seems to attack such lovely people.

Val and her family became and remain stellar supporters of the charity, and I would frequently see them at the monthly golf club quizgo (highly recommended if you enjoy trivia and are of course willing to donate any winnings to a local charity...)* Val always had a smile and a chat whilst Pete always had a one liner at the ready.

*Not compulsory

Over time we saw each other less and less as we both found spending time out and about more challenging, until I heard the news last Friday. RIP Val, it was lovely to know you. All my love to the Franklin family.

A life with MND, particularly when you are integrated with patient communities on line and in person, means that losing people is tragically a frequent occurrence. A consistent reminder of your own proximity to death.

So how to react to such sobering news on such a regular basis? I remember I am alive. I have opportunity. I love. I laugh, I strive, I experience. In Vals honour, in Robs honour, for all the fallen warriors I've lost along the way,

I will live the most significant life I can muster.

Nothing else matters

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