Have you heard ?
I’ve become quite blasé about telling people now. Its not a job I enjoy as it can be upsetting for both the listener and the speaker, however it wasn’t always like that…
The first person I told was Mudders – I ended up sobbing outside a bar in Soho of all places, then Squirt and H as we were away on our annual London Golf trip. Next was my father (although he kind of already knew) and brother, then a few more close friends and then my mother (just because it takes longer to get a date to see Mum). I chickened out of telling my in-laws, I left that to Becky (sorry).
I wanted it kept a secret, I’m not sure why, I just wanted time to process it myself. People would ask if they could tell someone and I’d always say yes, but it remained a pretty tight nit group of people that knew for a while.
I told a few people after a few beers and a few others that I knew wouldn’t get too emotional about.
I waited a long time before telling my niece and nephew (a decision I regret because of how it eventually came out) – Talk about loose lips sinking ships, but what’s done is done – I think the damage is repaired.
I haven’t told many clients yet – they are next on the list. Other friends will just have to find out when I make my big announcement. I’ve been planning something for a while (in my head) but I think the time is now approaching. I want to do it by video, although I’m a bit nervous about it.
Why a big announcement. Basically to quash the rumours, to make it easier for other people to spread the word but also so I can overtly/publicly do some charity work and raise some much needed funds for research. The awareness of MND needs to be stronger out there, I would encourage anyone thinking of doing something for charity on your own personal bucket list to perhaps consider MND.
I’m not looking for sympathy or to create a big shock. I’m living with this now, by letting everyone know now allows be to be open with my day to day struggles. It also is a huge weight of my mind knowing people know.
I have good days and bad days as you can imagine and whilst life is still to some normality at present, it’s amazing how I can go days and not think about MND.