I’d just celebrated turning 50. It was a great night and life was good.
I certainly didn’t expect to be told a few months later that I had Motor Neurone Disease (MND), and that it would take me away from my family forever - from my boys and my beloved Angie - and from all of you reading this now.
MND is an incurable disease . Yep we still have a few of those and I bloody got one. It’s a death sentence like no other, and is going to rob me of everything, gradually and painfully, bit by bit over the coming months but… hopefully, years. Thats the thing with MND, the fact we simply don’t know how long I’ve got is another cruelty of the disease.
Angie and I were going to grow old together. I wanted to see my kids grow up, maybe even be a grandad, and retire somewhere amazing, perhaps to the countryside where I could do up a campervan ready to travel across Europe. We’ve just settled into our new house, and had big renovation plans for it too, but those plans now have to change. It may even mean I have to give up the job I love at some point too.
We’re only at the start of all this, and my body is already preventing me from doing basic things we all take for granted - like making a cup of tea, washing my hair and putting my coat on. As well as the physical changes, there’s the relentless mining for information, appointments to schedule (and sometimes demand) and the adaptations the house needs. Never mind the total head-f*** emotionally - this is, to put it mildly, a lot for me to deal with.
Luckily I have a brilliant woman by my side who is thinking ahead and organising us. First - we have to face the reality of making our house more ‘disabled friendly’ and top of the wish list is the need for a hi-tech, water-jet spraying, bum drying ‘Japanese toilet!’
Following my diagnosis a lot of you have asked how you can help. It’s really hard to say right now, and a lot of things will require you being local - such as taking the kids to school or taking me to appointments (not helped by the fact that I have had my my drivers license revoked - although hoping to get it back, we will see…). But helping us cover the costs of some things now will help us save funds for later down the line when I will need equipment and carers, which we may not get the funding for.
If you want to help me and don’t know how, please consider chucking some cash in here today.
It really will help us, not just to make renovations to the bathroom and other bits of the house that I will soon need, but to help ease the fear we have of future financial worries - making sure our boys have the life we’d planned for them as much as possible, even if I’m not there by their side.
Ugh well this has all got very dark hasn’t it! And I need you all, to keep positive for me, to keep me laughing and I will do my best to fight this for many years to come.
Thanks so much, love you all and see you soon?
Waller x
