Diagnosis Death – What Next ?

I was diagnosed on October 4th although I had some idea what was coming as early as July 2016. While it didn’t come as a shock hearing the words directed at you are pretty numbing. He said it in such a calm, matter of fact way that it was difficult to take in. Unlike many nasty diseases there isn’t any ‘treatment’ as such. It runs its course at its own unique pace – all they can do is try and extend what life you have left. So what’s next ? This will of course be different for everyone but for me its easier to start with what I didn’t do.

  • I didn’t gaze wistfully at trees and hills, sunsets or rainbows – no gazing
  • I didn’t give up work and travel the world – I’ve got bills to pay and clients to help
  • I didn’t only work a few hours a day and enjoy the rest – around December I had several late night sessions trying to complete sites for clients.
  • I didn’t update my will
  • I didn’t look for a magic cure

What I did do was…

  • Cry – I cried the moment I stepped outside the consultants door. The first person (other than Becky as she was with me throughout) I told was my best friend Matt (pissed up outside a bar in Soho after playing golf). I wept like a child, I wasn’t and am not ashamed of it. Next Squirt and Henry. Squirt already knew it was coming as he was aware of my tests – he’s like a rock or he has blocked tear ducts!
  • I told my family next and my closest friends – a small group of no more than 12-15 people knew.
  • I wrote important things down on paper (life insurance, pensions, wills, what I want at my funeral, bucket lists)
  • Organised a trip to Berlin with Becky – A bit of us time to talk about things.
  • Organised a boys trip away to Portugal to play golf

Then I parked it – it was there but it wasn’t going to get in the way of other stuff. The shower was the only place that I allowed myself to cry. I had a few slips… On my birthday I blubbed after Freddie gave me my present – all I could think of was how many birthday’s would I have with him. I had a couple of other out-bursts, but these were alcohol related so don’t count.

I still well up a lot. Whenever I think about Freddie generally. Who will help him grow up, teach him life tricks, improve his golf swing, tie his boots before rugby… there I go again, damn tear ducts. Anyway my point is that while this disease is undoubtedly tragic it does however give you time to plan and work out a few things. I am not dying of MND, I’m living with it – I just don’t know how long for. I’m lucky, 4 friends have died recently, unexpectedly – one day alive, the next day gone. It could happen to us all.

So while I’m not someone to start shouting “Carpe Diem”  – that would be unrealistic, what I would say is don’t put things off unnecessarily. If you’ve always wanted to do something, start planning, take some steps towards it. Yes you still have work and bills and they matter – but so does your life… get on with it.